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Page 1: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

DEVELOPMENTAL PSYCHOPATHOLOGY

Trim Size 85in x 11in Cicchetti ffirstex V1 - Volume III - 01112016 504pm Page iii

DEVELOPMENTAL PSYCHOPATHOLOGYTHIRD EDITION

Volume Three Maladaptation and Psychopathology

Editor

DANTE CICCHETTI

This book is printed on acid-free paper

Copyright copy 2016 by John Wiley amp Sons Inc All rights reserved

Published by John Wiley amp Sons Inc Hoboken New Jersey

Published simultaneously in Canada

No part of this publication may be reproduced stored in a retrieval system or transmitted in any form or by any means electronic mechanicalphotocopying recording scanning or otherwise except as permitted under Section 107 or 108 of the 1976 United States Copyright Act without eitherthe prior written permission of the Publisher or authorization through payment of the appropriate per-copy fee to the Copyright Clearance CenterInc 222 Rosewood Drive Danvers MA 01923 (978) 750-8400 fax (978) 646-8600 or on the web at wwwcopyrightcom Requests to the Publisher forpermission should be addressed to the Permissions Department John Wiley amp Sons Inc 111 River Street Hoboken NJ 07030 (201) 748-6011 fax(201) 748-6008

Limit of LiabilityDisclaimer of Warranty While the publisher and author have used their best efforts in preparing this book they make norepresentations or warranties with respect to the accuracy or completeness of the contents of this book and specifically disclaim any implied warrantiesof merchantability or fitness for a particular purpose No warranty may be created or extended by sales representatives or written sales materials Theadvice and strategies contained herein may not be suitable for your situation You should consult with a professional where appropriate Neither thepublisher nor author shall be liable for any loss of profit or any other commercial damages including but not limited to special incidentalconsequential or other damages

This publication is designed to provide accurate and authoritative information in regard to the subject matter covered It is sold with the understandingthat the publisher is not engaged in rendering professional services If legal accounting medical psychological or any other expert assistance isrequired the services of a competent professional person should be sought

Designations used by companies to distinguish their products are often claimed as trademarks In all instances where John Wiley amp Sons Inc is awareof a claim the product names appear in initial capital or all capital letters Readers however should contact the appropriate companies for morecomplete information regarding trademarks and registration

For general information on our other products and services please contact our Customer Care Department within the United States at (800) 762-2974outside the United States at (317) 572-3993 or fax (317) 572-4002

Wiley publishes in a variety of print and electronic formats and by print-on-demand Some material included with standard print versions of this bookmay not be included in e-books or in print-on-demand If this book refers to media such as a CD or DVD that is not included in the version youpurchased you may download this material at httpbooksupportwileycom For more information about Wiley products visit wwwwileycom

Library of Congress Cataloging-in-Publication Data

Developmental psychopathology editor Dante Cicchetti ndash Third editionpages cm

Includes indexISBN 978-1-118-12087-3 (volume 1 cloth alk paper) ndash ISBN 978-1-118-12091-0 (volume 2 alk paper) ndash ISBN 978-1-118-12092-7

(volume 3 alk paper) ndash ISBN 978-1-118-12093-4 (volume 4 alk paper) 1 Mental illnessndashEtiology 2 Developmental psychology3 Mental illnessndashRisk factors 4 Adjustment (Psychology) I Cicchetti DanteRC4544D483 201661689ndashdc23

2015018216

Printed in the United States of America

10 9 8 7 6 5 4 3 2 1

These volumes are dedicated to Marianne Gerschel in recognitionof her great vision and staunch support of the field

of developmental psychopathology

Contents

Preface to Developmental Psychopathology Third Edition xiDante Cicchetti

Contributors xiii

1 DEVELOPMENTS IN THE DEVELOPMENTAL APPROACH TO INTELLECTUALDISABILITY 1Jacob A Burack Natalie Russo Cathryn Gordon Green Oriane Landry and Grace Iarocci

2 FRAGILE X SYNDROME AS AMULTILEVEL MODEL FOR UNDERSTANDINGBEHAVIORALLY DEFINED DISORDERS 68Annette Karmiloff-Smith Brianna Doherty Kim Cornish and Gaia Scerif

3 AUTISM SPECTRUM DISORDERS 81Raphael Bernier and Geraldine Dawson

4 JOINT ATTENTION AND THE SOCIAL PHENOTYPE OF AUTISM SPECTRUM DISORDERA PERSPECTIVE FROM DEVELOPMENTAL PSYCHOPATHOLOGY 116Amy Vaughan Van Hecke Tasha Oswald and Peter Mundy

5 EXPLICATING THE ldquoDEVELOPMENTALrdquo IN PRESCHOOL PSYCHOPATHOLOGY 152Sara J Bufferd Margaret W Dyson Iseli G Hernandez and Lauren S Wakschlag

6 THE DEVELOPMENT OF EMOTION REGULATION IMPLICATIONS FOR CHILDADJUSTMENT 187Susan D Calkins and Nicole B Perry

7 INTERPERSONAL THEORIES OF DEVELOPMENTAL PSYCHOPATHOLOGY 243Karen D Rudolph Jennifer E Lansford and Philip C Rodkin

8 COGNITIVE RISKS IN DEVELOPMENTAL PSYCHOPATHOLOGY 312Benjamin L Hankin Hannah R Snyder and Lauren D Gulley

vii

viii Contents

9 TRAUMATIC STRESS FROM AMULTILEVEL DEVELOPMENTAL PSYCHOPATHOLOGYPERSPECTIVE 386J Douglas Bremner

10 CHILDHOOD EXPOSURE TO INTERPERSONAL TRAUMA 425Alicia F Lieberman and Ann T Chu

11 CHILDMALTREATMENT AND DEVELOPMENTAL PSYCHOPATHOLOGY A MULTILEVELPERSPECTIVE 457Dante Cicchetti and Sheree L Toth

12 A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVE ON FOSTER CARERESEARCH 513Philip A Fisher Leslie D Leve Brianna Delker Leslie E Roos and Bryna Cooper

13 MEMORY DEVELOPMENT EMOTION REGULATION AND TRAUMA-RELATEDPSYCHOPATHOLOGY 555Gail S Goodman Deborah Goldfarb Jodi A Quas Rachel K Narr Helen Milojevich and Ingrid M Cordon

14 ATTENTION AND IMPULSIVITY 591Joel T Nigg

15 THE DEVELOPMENT AND ECOLOGY OF ANTISOCIAL BEHAVIOR LINKING ETIOLOGYPREVENTION AND TREATMENT 647Thomas J Dishion and Gerald R Patterson

16 NARCISSISM 679Sander Thomaes and Eddie Brummelman

17 A MULTILEVEL PERSPECTIVE ON THE DEVELOPMENT OF BORDERLINEPERSONALITY DISORDER 726Peter Fonagy and Patrick Luyten

18 ALCOHOL USE AND THE ALCOHOL USE DISORDERS OVER THE LIFE COURSEA CROSS-LEVEL DEVELOPMENTAL REVIEW 793Robert A Zucker Brian M Hicks and Mary M Heitzeg

19 SUBSTANCE USE AND SUBSTANCE USE DISORDERS 833Laurie Chassin Craig R Colder Andrea Hussong and Kenneth J Sher

20 BIPOLAR DISORDER FROM A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVEFOCUSING ON PHENOMENOLOGY ETIOLOGY AND NEUROBIOLOGY 898Bonnie Klimes-Dougan Kevin P Kennedy and Kathryn R Cullen

21 CHILDHOOD SCHIZOPHRENIA 950Rochelle Caplan

Contents ix

22 MULTILEVEL APPROACHES TO SCHIZOPHRENIA AND OTHER PSYCHOTICDISORDERS THE BIOBEHAVIORAL INTERFACE 997Elaine F Walker Arthur T Ryan Katrina C Bridgman Goines Derek M Novacek Sandra M GouldingJoy L Brasfield Allison Macdonald and Hanan D Trotman

23 TOWARD A UNIFYING PERSPECTIVE ON PERSONALITY PATHOLOGY ACROSSTHE LIFE SPAN 1039Jennifer L Tackett Kathrin Herzhoff Steve Balsis and Luke Cooper

24 TOWARD A DEVELOPMENTAL PSYCHOPATHOLOGY OF PERSONALITY DISTURBANCEA NEUROBEHAVIORAL DIMENSIONALMODEL INCORPORATING GENETICENVIRONMENTAL AND EPIGENETIC FACTORS 1079Mark F Lenzenweger and Richard A Depue

Author Index 1111

Subject Index 1189

Preface to Developmental Psychopathology Third Edition

A decade has passed since the second edition of Devel-opmental Psychopathology was published The two prioreditions (Cicchetti amp Cohen 1995 2006) have been veryinfluential in the growth of the field of developmentalpsychopathology The volumes have been highly cited inthe literature and have served as an important resource fordevelopmental scientists and prevention and interventionresearchers alike In the present third edition we haveexpanded from the three volumes contained in the secondedition to four volumes The increased number of volumesin this current edition reflects the continued knowledgegains that have occurred in the field over the past decade

A not insignificant contributor to this growth can befound in the very principles of the discipline (Cicchetti1984 1990 1993 Cicchetti amp Sroufe 2000 Cicchetti ampToth 1991 2009 Rutter amp Sroufe 2000 Sroufe amp Rutter1984) Theorists researchers and prevention scientists inthe field of developmental psychopathology adhere to alife span framework to elucidate the numerous processesand mechanisms that can contribute to the developmentof mental disorders in high-risk individuals as well asthose operative in individuals who already have manifestedpsychological disturbances or who have averted such disor-ders despite their high-risk status (Cicchetti 1993 Masten2014 Rutter 1986 1987 2012) Not only is knowledge ofnormal genetic neurobiological physiological hormonalpsychological and social processes very helpful for under-standing preventing and treating psychopathology butalso deviations from and distortions of normal develop-ment that are seen in pathological processes indicate ininnovative ways how normal development may be bet-ter investigated and understood Similarly informationobtained from investigations of experiments of naturehigh-risk conditions and psychopathology can augmentthe comprehension of normal development (Cicchetti1984 1990 1993 Rutter 1986 Rutter amp Garmezy 1983Sroufe 1990 Weiss 1969)

Another factor that has expedited growth within thefield of developmental psychopathology has been its abilityto incorporate knowledge from diverse disciplines and to

encourage interdisciplinary and translational research(Cicchetti amp Gunnar 2009 Cicchetti amp Toth 2006) Inkeeping with its integrative focus contributions to develop-mental psychopathology have come from many disciplinesof the biological and social sciences A wide array ofcontent areas scientific disciplines and methodologies hasbeen germane Risk and protective factors and processeshave been identified and validated at multiple levels ofanalysis and in multiple domains

The increased emphasis on a multilevel dynamic sys-tems approach to psychopathology and resilience theincreased attention paid to genendashenvironment interplay inthe development of psychopathology and resilience andthe application of a multiple levels of analysis develop-mental perspective to mental illnesses that have tradi-tionally been examined nondevelopmentally (eg bipolardisorder schizophrenia and the personality disorders)not only have contributed to a deeper understandingof the dysfunctions but also have educated the publicabout the causes and consequences of mental disorder(see Cicchetti amp Cannon 1999 Cicchetti amp Crick 2009a2009b Miklowitz amp Cicchetti 2006 2010 Tackett ampSharp 2014)

Advances in genomics GxE interactions and epigenet-ics growth in our understanding of neurobiology neuralplasticity and resilience and progress in the developmentof methodological and technological tools including brainimaging neural circuitry hormone assays immunologysocial and environmental influences on brain developmentand statistical analysis of developmental change pavethe way for interdisciplinary and for multiple levels ofanalysis research programs that will significantly increasethe knowledge base of the development and course ofmaladaptation psychopathology and resilience More-over randomized control prevention and interventiontrials are being conducted based on theoretical modelsand efforts to elucidate the mechanisms and processes con-tributing to developmental change at both the biologicaland psychological levels (Belsky amp van IJzendoorn 2015Cicchetti amp Gunnar 2008)

xi

xii Preface to Developmental Psychopathology Third Edition

Despite the significant advances that have occurred inthe field of developmental psychopathology much impor-tant work lies ahead Undoubtedly these future develop-ments will build on the venerable contributions of the pasthowever as work in the field becomes increasingly interdis-ciplinary multilevel and technologically sophisticated it isessential that even more emphasis be directed toward theprocess of development (Harter 2006 Sroufe 2007 2013)It is not only genes and environments but also the cumula-tive developmental history of the individual that influenceshow future development will unfold (Sroufe 2007 2013)

Developmental psychopathologists have incorporatedconcepts and methods derived from other disciplinaryendeavors that are too often isolated from each otherthereby generating advances in knowledge that might havebeen missed in the absence of cross-disciplinary dialogueThe continuation and elaboration of the mutually enrich-ing interchanges that have occurred within and acrossdisciplines interested in normal and abnormal develop-ment not only will enhance the science of developmentalpsychopathology but also will increase the benefits to bederived for individuals with high-risk conditions or mentaldisorders families and society as a whole

Dante Cicchetti PhDMinneapolis MN

January 2015

REFERENCES

Belsky J amp van IJzendoorn M (2015) What works for whom Geneticmoderation of intervention efficacy [Special Section] Developmentand Psychopathology 27 1ndash6

Cicchetti D (1984) The emergence of developmental psychopathologyChild Development 55(1) 1ndash7

Cicchetti D (1990) A historical perspective on the discipline of devel-opmental psychopathology In J Rolf A Masten D Cicchetti KNuechterlein amp S Weintraub (Eds) Risk and protective factorsin the development of psychopathology (pp 2ndash28) New York NYCambridge University Press

Cicchetti D (1993) Developmental psychopathology Reactions reflec-tions projections Developmental Review 13 471ndash502

Cicchetti D amp Cannon T (1999) Neurodevelopmental processes in theontogenesis and epigenesis of psychopathologyDevelopment and Psy-chopathology 11 375ndash393

Cicchetti D amp Cohen D (Eds) (1995)Developmental psychopathology(Vols 1ndash2) New York NY Wiley

Cicchetti D amp Cohen D (Eds) (2006)Developmental psychopathology(2nd ed Vols 1ndash3) New York NY Wiley

Cicchetti D amp Crick N R (Eds) (2009a) Precursors of anddiverse pathways to personality disorder in children and adoles-cents [Special Issue Part 1]Development and Psychopathology 21(3)683ndash1030

Cicchetti D amp Crick N R (Eds) (2009b) Precursors of and diversepathways to personality disorder in children and adolescents [SpecialIssue Part 2] Development and Psychopathology 21(4) 1031ndash1381

Cicchetti D amp Gunnar M R (2008) Integrating biological processesinto the design and evaluation of preventive interventions Develop-ment and Psychopathology 20 737ndash743

Cicchetti D amp Gunnar M R (Eds) (2009) Meeting the challenge oftranslational research in child psychology Minnesota symposia onchild psychology (Vol 35) New York NY Wiley

Cicchetti D amp Sroufe L A (2000) The past as prologue to the futureThe times theyrsquove been a changinrsquoDevelopment and Psychopathology12 255ndash264

Cicchetti D amp Toth S L (1991) The making of a developmental psy-chopathologist In J Cantor C Spiker amp L Lipsitt (Eds) Childbehavior and development Training for diversity (pp 34ndash72)NorwoodNJ Ablex

Cicchetti D amp Toth S L (Eds) (2006) Translational research in devel-opmental psychopathology [Special Issue] Development and Psy-chopathology 18(3) 619ndash933

Cicchetti D amp Toth S L (2009) The past achievements and futurepromises of developmental psychopathology The coming of age ofa discipline Journal of Child Psychology and Psychiatry 50 16ndash25

Harter S (2006) Self-processes and developmental psychopathology InD Cicchetti amp D Cohen (Eds) Developmental psychopathology (2nded 370ndash418) New York NY Wiley

Masten A S (2014) Ordinary magic Resilience in development NewYork NY Guilford Publications Inc

Miklowitz D J amp Cicchetti D (2006) Toward a life span developmen-tal psychopathology perspective on bipolar disorderDevelopment andPsychopathology 18 935ndash938

Miklowitz D J amp Cicchetti D (Eds) (2010) Bipolar disorder A devel-opmental psychopathology approach New York NY Guilford

Rutter M (1986) Child psychiatry The interface between clinical anddevelopmental research Psychological Medicine 16 151ndash169

Rutter M (1987) Psychosocial resilience and protective mechanismsAmerican Journal of Orthopsychiatry 57 316ndash331

Rutter M (2012) Resilience as a dynamic conceptDevelopment and Psy-chopathology 24 335ndash344

RutterM ampGarmezyN (1983)Developmental psychopathology In EM Hetherington (Ed) Handbook of child psychology (pp 774ndash911)New York NY Wiley

Rutter M amp Sroufe L A (2000) Developmental psychopathologyConcepts and challenges Development and Psychopathology 12265ndash296

Sroufe L A (1990) Considering normal and abnormal together Theessence of developmental psychopathology Development and Psy-chopathology 2 335ndash347

Sroufe L A (2007) The place of development in developmental psy-chopathology In A Masten (Ed)Multilevel dynamics in developmen-tal psychopathology pathways to the future The Minnesota symposiaon child psychology (pp 285ndash299) Mahwah NJ Erlbaum

Sroufe L A (2013) The promise of developmental psychopathologyDevelopment and Psychopathology 25 1215ndash1224

Sroufe L A amp Rutter M (1984) The domain of developmental psy-chopathology Child Development 55 17ndash29

Tackett J L amp Sharp C (2014) A developmental psychopathology per-spective on personality disorder [Special Issue] Journal of PersonalityDisorders 28 1ndash179

Weiss P (1969) Principles of development New York NY Hafner

Contributors

Steve Balsis PhDTexas AampMUniversityCollege Station Texas

Raphael Bernier PhDUniversity of WashingtonSeattle Washington

Joy L Brasfield MAEmory UniversityAtlanta Georgia

J Douglas Bremner MDEmory UniversityAtlanta Georgia

Katrina C Bridgman Goines MAEmory UniversityAtlanta Georgia

Eddie Brummelman MAUtrecht UniversityUtrecht Netherlands

Sara J Bufferd PhDCalifornia State University SanMarcosSanMarcos California

Jacob A Burack PhDMcGill UniversityMontreal CanadaandHocircpital Riviegravere-des-PrairiesMontreal Canada

Susan D Calkins PhDUniversity of North CarolinaGreensboro North Carolina

Rochelle Caplan MDUniversity of CaliforniaLos Angeles California

Laurie Chassin PhDArizona State UniversityTempe Arizona

Ann T Chu PhDA Better Way IncSan Francisco California

Dante Cicchetti PhDInstitute of Child DevelopmentUniversity of MinnesotaMinneapolis Minnesota

Craig R Colder PhDUniversity at BuffaloState University of New YorkBuffalo New York

Bryna Cooper BAUniversity of OregonEugene Oregon

Luke CooperTexas AampMUniversityCollege Station Texas

Ingrid M Cordon PhDUniversity of California DavisDavis California

Kim Cornish PhDMonash UniversityVictoria Australia

Kathryn R Cullen MDUniversity of MinnesotaMinneapolis Minnesota

Geraldine Dawson PhDDuke UniversityDurham North Carolina

xiii

xiv Contributors

Brianna Delker MSUniversity of OregonEugene Oregon

Richard A Depue PhDCornell UniversityIthaca New York

Thomas J Dishion PhDArizona State UniversityTempe Arizona

Brianna Doherty BS MScUniversity of OxfordOxford England

Margaret W Dyson PhDUniversity of California San DiegoLa Jolla California

Philip A Fisher PhDUniversity of OregonEugene Oregon

Peter Fonagy OBE PhD FMedSci FBAUniversity College LondonLondon United Kingdom

Deborah Goldfarb JDUniversity of California DavisDavis California

Gail S Goodman PhDUniversity of California DavisDavis California

Sandra M Goulding MPHMAEmory UniversityAtlanta Georgia

Cathryn Gordon Green BAMcGill UniversityMontreal Canada

Lauren D Gulley MAUniversity of DenverDenver Colorado

Benjamin L Hankin PhDUniversity of DenverDenver Colorado

Iseli G Hernandez BANorthwestern UniversityChicago Illinois

Kathrin Herzhoff MANorthwestern University

Chicago IllinoisHouston Texas

MaryM Heitzeg PhDUniversity of MichiganAnn Arbor Michigan

Brian M Hicks PhDUniversity of MichiganAnn Arbor Michigan

Andrea Hussong PhDUniversity of North CarolinaChapel Hill North Carolina

Grace Iarocci PhDSimon Fraser UniversityBurnaby Canada

Annette Karmiloff-Smith CBE FBAFMedSci MAE CPscyhol

Birkbeck University of LondonLondon United Kingdom

Kevin P Kennedy BAUniversity of CaliforniaBerkeley California

Bonnie Klimes-Dougan PhDUniversity of MinnesotaMinneapolis Minnesota

Oriane Landry PhDLaTrobe UniversityBendigo Australia

Jennifer E Lansford PhDDuke UniversityDurham North Carolina

Mark F Lenzenweger PhDState University of New YorkBinghamton New YorkandWeill Cornell Medical CollegeNew York New York

Leslie D Leve PhDUniversity of OregonEugene Oregon

Alicia F Lieberman PhDUniversity of California San FranciscoSan Francisco California

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 2: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

Trim Size 85in x 11in Cicchetti ffirstex V1 - Volume III - 01112016 504pm Page iii

DEVELOPMENTAL PSYCHOPATHOLOGYTHIRD EDITION

Volume Three Maladaptation and Psychopathology

Editor

DANTE CICCHETTI

This book is printed on acid-free paper

Copyright copy 2016 by John Wiley amp Sons Inc All rights reserved

Published by John Wiley amp Sons Inc Hoboken New Jersey

Published simultaneously in Canada

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Library of Congress Cataloging-in-Publication Data

Developmental psychopathology editor Dante Cicchetti ndash Third editionpages cm

Includes indexISBN 978-1-118-12087-3 (volume 1 cloth alk paper) ndash ISBN 978-1-118-12091-0 (volume 2 alk paper) ndash ISBN 978-1-118-12092-7

(volume 3 alk paper) ndash ISBN 978-1-118-12093-4 (volume 4 alk paper) 1 Mental illnessndashEtiology 2 Developmental psychology3 Mental illnessndashRisk factors 4 Adjustment (Psychology) I Cicchetti DanteRC4544D483 201661689ndashdc23

2015018216

Printed in the United States of America

10 9 8 7 6 5 4 3 2 1

These volumes are dedicated to Marianne Gerschel in recognitionof her great vision and staunch support of the field

of developmental psychopathology

Contents

Preface to Developmental Psychopathology Third Edition xiDante Cicchetti

Contributors xiii

1 DEVELOPMENTS IN THE DEVELOPMENTAL APPROACH TO INTELLECTUALDISABILITY 1Jacob A Burack Natalie Russo Cathryn Gordon Green Oriane Landry and Grace Iarocci

2 FRAGILE X SYNDROME AS AMULTILEVEL MODEL FOR UNDERSTANDINGBEHAVIORALLY DEFINED DISORDERS 68Annette Karmiloff-Smith Brianna Doherty Kim Cornish and Gaia Scerif

3 AUTISM SPECTRUM DISORDERS 81Raphael Bernier and Geraldine Dawson

4 JOINT ATTENTION AND THE SOCIAL PHENOTYPE OF AUTISM SPECTRUM DISORDERA PERSPECTIVE FROM DEVELOPMENTAL PSYCHOPATHOLOGY 116Amy Vaughan Van Hecke Tasha Oswald and Peter Mundy

5 EXPLICATING THE ldquoDEVELOPMENTALrdquo IN PRESCHOOL PSYCHOPATHOLOGY 152Sara J Bufferd Margaret W Dyson Iseli G Hernandez and Lauren S Wakschlag

6 THE DEVELOPMENT OF EMOTION REGULATION IMPLICATIONS FOR CHILDADJUSTMENT 187Susan D Calkins and Nicole B Perry

7 INTERPERSONAL THEORIES OF DEVELOPMENTAL PSYCHOPATHOLOGY 243Karen D Rudolph Jennifer E Lansford and Philip C Rodkin

8 COGNITIVE RISKS IN DEVELOPMENTAL PSYCHOPATHOLOGY 312Benjamin L Hankin Hannah R Snyder and Lauren D Gulley

vii

viii Contents

9 TRAUMATIC STRESS FROM AMULTILEVEL DEVELOPMENTAL PSYCHOPATHOLOGYPERSPECTIVE 386J Douglas Bremner

10 CHILDHOOD EXPOSURE TO INTERPERSONAL TRAUMA 425Alicia F Lieberman and Ann T Chu

11 CHILDMALTREATMENT AND DEVELOPMENTAL PSYCHOPATHOLOGY A MULTILEVELPERSPECTIVE 457Dante Cicchetti and Sheree L Toth

12 A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVE ON FOSTER CARERESEARCH 513Philip A Fisher Leslie D Leve Brianna Delker Leslie E Roos and Bryna Cooper

13 MEMORY DEVELOPMENT EMOTION REGULATION AND TRAUMA-RELATEDPSYCHOPATHOLOGY 555Gail S Goodman Deborah Goldfarb Jodi A Quas Rachel K Narr Helen Milojevich and Ingrid M Cordon

14 ATTENTION AND IMPULSIVITY 591Joel T Nigg

15 THE DEVELOPMENT AND ECOLOGY OF ANTISOCIAL BEHAVIOR LINKING ETIOLOGYPREVENTION AND TREATMENT 647Thomas J Dishion and Gerald R Patterson

16 NARCISSISM 679Sander Thomaes and Eddie Brummelman

17 A MULTILEVEL PERSPECTIVE ON THE DEVELOPMENT OF BORDERLINEPERSONALITY DISORDER 726Peter Fonagy and Patrick Luyten

18 ALCOHOL USE AND THE ALCOHOL USE DISORDERS OVER THE LIFE COURSEA CROSS-LEVEL DEVELOPMENTAL REVIEW 793Robert A Zucker Brian M Hicks and Mary M Heitzeg

19 SUBSTANCE USE AND SUBSTANCE USE DISORDERS 833Laurie Chassin Craig R Colder Andrea Hussong and Kenneth J Sher

20 BIPOLAR DISORDER FROM A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVEFOCUSING ON PHENOMENOLOGY ETIOLOGY AND NEUROBIOLOGY 898Bonnie Klimes-Dougan Kevin P Kennedy and Kathryn R Cullen

21 CHILDHOOD SCHIZOPHRENIA 950Rochelle Caplan

Contents ix

22 MULTILEVEL APPROACHES TO SCHIZOPHRENIA AND OTHER PSYCHOTICDISORDERS THE BIOBEHAVIORAL INTERFACE 997Elaine F Walker Arthur T Ryan Katrina C Bridgman Goines Derek M Novacek Sandra M GouldingJoy L Brasfield Allison Macdonald and Hanan D Trotman

23 TOWARD A UNIFYING PERSPECTIVE ON PERSONALITY PATHOLOGY ACROSSTHE LIFE SPAN 1039Jennifer L Tackett Kathrin Herzhoff Steve Balsis and Luke Cooper

24 TOWARD A DEVELOPMENTAL PSYCHOPATHOLOGY OF PERSONALITY DISTURBANCEA NEUROBEHAVIORAL DIMENSIONALMODEL INCORPORATING GENETICENVIRONMENTAL AND EPIGENETIC FACTORS 1079Mark F Lenzenweger and Richard A Depue

Author Index 1111

Subject Index 1189

Preface to Developmental Psychopathology Third Edition

A decade has passed since the second edition of Devel-opmental Psychopathology was published The two prioreditions (Cicchetti amp Cohen 1995 2006) have been veryinfluential in the growth of the field of developmentalpsychopathology The volumes have been highly cited inthe literature and have served as an important resource fordevelopmental scientists and prevention and interventionresearchers alike In the present third edition we haveexpanded from the three volumes contained in the secondedition to four volumes The increased number of volumesin this current edition reflects the continued knowledgegains that have occurred in the field over the past decade

A not insignificant contributor to this growth can befound in the very principles of the discipline (Cicchetti1984 1990 1993 Cicchetti amp Sroufe 2000 Cicchetti ampToth 1991 2009 Rutter amp Sroufe 2000 Sroufe amp Rutter1984) Theorists researchers and prevention scientists inthe field of developmental psychopathology adhere to alife span framework to elucidate the numerous processesand mechanisms that can contribute to the developmentof mental disorders in high-risk individuals as well asthose operative in individuals who already have manifestedpsychological disturbances or who have averted such disor-ders despite their high-risk status (Cicchetti 1993 Masten2014 Rutter 1986 1987 2012) Not only is knowledge ofnormal genetic neurobiological physiological hormonalpsychological and social processes very helpful for under-standing preventing and treating psychopathology butalso deviations from and distortions of normal develop-ment that are seen in pathological processes indicate ininnovative ways how normal development may be bet-ter investigated and understood Similarly informationobtained from investigations of experiments of naturehigh-risk conditions and psychopathology can augmentthe comprehension of normal development (Cicchetti1984 1990 1993 Rutter 1986 Rutter amp Garmezy 1983Sroufe 1990 Weiss 1969)

Another factor that has expedited growth within thefield of developmental psychopathology has been its abilityto incorporate knowledge from diverse disciplines and to

encourage interdisciplinary and translational research(Cicchetti amp Gunnar 2009 Cicchetti amp Toth 2006) Inkeeping with its integrative focus contributions to develop-mental psychopathology have come from many disciplinesof the biological and social sciences A wide array ofcontent areas scientific disciplines and methodologies hasbeen germane Risk and protective factors and processeshave been identified and validated at multiple levels ofanalysis and in multiple domains

The increased emphasis on a multilevel dynamic sys-tems approach to psychopathology and resilience theincreased attention paid to genendashenvironment interplay inthe development of psychopathology and resilience andthe application of a multiple levels of analysis develop-mental perspective to mental illnesses that have tradi-tionally been examined nondevelopmentally (eg bipolardisorder schizophrenia and the personality disorders)not only have contributed to a deeper understandingof the dysfunctions but also have educated the publicabout the causes and consequences of mental disorder(see Cicchetti amp Cannon 1999 Cicchetti amp Crick 2009a2009b Miklowitz amp Cicchetti 2006 2010 Tackett ampSharp 2014)

Advances in genomics GxE interactions and epigenet-ics growth in our understanding of neurobiology neuralplasticity and resilience and progress in the developmentof methodological and technological tools including brainimaging neural circuitry hormone assays immunologysocial and environmental influences on brain developmentand statistical analysis of developmental change pavethe way for interdisciplinary and for multiple levels ofanalysis research programs that will significantly increasethe knowledge base of the development and course ofmaladaptation psychopathology and resilience More-over randomized control prevention and interventiontrials are being conducted based on theoretical modelsand efforts to elucidate the mechanisms and processes con-tributing to developmental change at both the biologicaland psychological levels (Belsky amp van IJzendoorn 2015Cicchetti amp Gunnar 2008)

xi

xii Preface to Developmental Psychopathology Third Edition

Despite the significant advances that have occurred inthe field of developmental psychopathology much impor-tant work lies ahead Undoubtedly these future develop-ments will build on the venerable contributions of the pasthowever as work in the field becomes increasingly interdis-ciplinary multilevel and technologically sophisticated it isessential that even more emphasis be directed toward theprocess of development (Harter 2006 Sroufe 2007 2013)It is not only genes and environments but also the cumula-tive developmental history of the individual that influenceshow future development will unfold (Sroufe 2007 2013)

Developmental psychopathologists have incorporatedconcepts and methods derived from other disciplinaryendeavors that are too often isolated from each otherthereby generating advances in knowledge that might havebeen missed in the absence of cross-disciplinary dialogueThe continuation and elaboration of the mutually enrich-ing interchanges that have occurred within and acrossdisciplines interested in normal and abnormal develop-ment not only will enhance the science of developmentalpsychopathology but also will increase the benefits to bederived for individuals with high-risk conditions or mentaldisorders families and society as a whole

Dante Cicchetti PhDMinneapolis MN

January 2015

REFERENCES

Belsky J amp van IJzendoorn M (2015) What works for whom Geneticmoderation of intervention efficacy [Special Section] Developmentand Psychopathology 27 1ndash6

Cicchetti D (1984) The emergence of developmental psychopathologyChild Development 55(1) 1ndash7

Cicchetti D (1990) A historical perspective on the discipline of devel-opmental psychopathology In J Rolf A Masten D Cicchetti KNuechterlein amp S Weintraub (Eds) Risk and protective factorsin the development of psychopathology (pp 2ndash28) New York NYCambridge University Press

Cicchetti D (1993) Developmental psychopathology Reactions reflec-tions projections Developmental Review 13 471ndash502

Cicchetti D amp Cannon T (1999) Neurodevelopmental processes in theontogenesis and epigenesis of psychopathologyDevelopment and Psy-chopathology 11 375ndash393

Cicchetti D amp Cohen D (Eds) (1995)Developmental psychopathology(Vols 1ndash2) New York NY Wiley

Cicchetti D amp Cohen D (Eds) (2006)Developmental psychopathology(2nd ed Vols 1ndash3) New York NY Wiley

Cicchetti D amp Crick N R (Eds) (2009a) Precursors of anddiverse pathways to personality disorder in children and adoles-cents [Special Issue Part 1]Development and Psychopathology 21(3)683ndash1030

Cicchetti D amp Crick N R (Eds) (2009b) Precursors of and diversepathways to personality disorder in children and adolescents [SpecialIssue Part 2] Development and Psychopathology 21(4) 1031ndash1381

Cicchetti D amp Gunnar M R (2008) Integrating biological processesinto the design and evaluation of preventive interventions Develop-ment and Psychopathology 20 737ndash743

Cicchetti D amp Gunnar M R (Eds) (2009) Meeting the challenge oftranslational research in child psychology Minnesota symposia onchild psychology (Vol 35) New York NY Wiley

Cicchetti D amp Sroufe L A (2000) The past as prologue to the futureThe times theyrsquove been a changinrsquoDevelopment and Psychopathology12 255ndash264

Cicchetti D amp Toth S L (1991) The making of a developmental psy-chopathologist In J Cantor C Spiker amp L Lipsitt (Eds) Childbehavior and development Training for diversity (pp 34ndash72)NorwoodNJ Ablex

Cicchetti D amp Toth S L (Eds) (2006) Translational research in devel-opmental psychopathology [Special Issue] Development and Psy-chopathology 18(3) 619ndash933

Cicchetti D amp Toth S L (2009) The past achievements and futurepromises of developmental psychopathology The coming of age ofa discipline Journal of Child Psychology and Psychiatry 50 16ndash25

Harter S (2006) Self-processes and developmental psychopathology InD Cicchetti amp D Cohen (Eds) Developmental psychopathology (2nded 370ndash418) New York NY Wiley

Masten A S (2014) Ordinary magic Resilience in development NewYork NY Guilford Publications Inc

Miklowitz D J amp Cicchetti D (2006) Toward a life span developmen-tal psychopathology perspective on bipolar disorderDevelopment andPsychopathology 18 935ndash938

Miklowitz D J amp Cicchetti D (Eds) (2010) Bipolar disorder A devel-opmental psychopathology approach New York NY Guilford

Rutter M (1986) Child psychiatry The interface between clinical anddevelopmental research Psychological Medicine 16 151ndash169

Rutter M (1987) Psychosocial resilience and protective mechanismsAmerican Journal of Orthopsychiatry 57 316ndash331

Rutter M (2012) Resilience as a dynamic conceptDevelopment and Psy-chopathology 24 335ndash344

RutterM ampGarmezyN (1983)Developmental psychopathology In EM Hetherington (Ed) Handbook of child psychology (pp 774ndash911)New York NY Wiley

Rutter M amp Sroufe L A (2000) Developmental psychopathologyConcepts and challenges Development and Psychopathology 12265ndash296

Sroufe L A (1990) Considering normal and abnormal together Theessence of developmental psychopathology Development and Psy-chopathology 2 335ndash347

Sroufe L A (2007) The place of development in developmental psy-chopathology In A Masten (Ed)Multilevel dynamics in developmen-tal psychopathology pathways to the future The Minnesota symposiaon child psychology (pp 285ndash299) Mahwah NJ Erlbaum

Sroufe L A (2013) The promise of developmental psychopathologyDevelopment and Psychopathology 25 1215ndash1224

Sroufe L A amp Rutter M (1984) The domain of developmental psy-chopathology Child Development 55 17ndash29

Tackett J L amp Sharp C (2014) A developmental psychopathology per-spective on personality disorder [Special Issue] Journal of PersonalityDisorders 28 1ndash179

Weiss P (1969) Principles of development New York NY Hafner

Contributors

Steve Balsis PhDTexas AampMUniversityCollege Station Texas

Raphael Bernier PhDUniversity of WashingtonSeattle Washington

Joy L Brasfield MAEmory UniversityAtlanta Georgia

J Douglas Bremner MDEmory UniversityAtlanta Georgia

Katrina C Bridgman Goines MAEmory UniversityAtlanta Georgia

Eddie Brummelman MAUtrecht UniversityUtrecht Netherlands

Sara J Bufferd PhDCalifornia State University SanMarcosSanMarcos California

Jacob A Burack PhDMcGill UniversityMontreal CanadaandHocircpital Riviegravere-des-PrairiesMontreal Canada

Susan D Calkins PhDUniversity of North CarolinaGreensboro North Carolina

Rochelle Caplan MDUniversity of CaliforniaLos Angeles California

Laurie Chassin PhDArizona State UniversityTempe Arizona

Ann T Chu PhDA Better Way IncSan Francisco California

Dante Cicchetti PhDInstitute of Child DevelopmentUniversity of MinnesotaMinneapolis Minnesota

Craig R Colder PhDUniversity at BuffaloState University of New YorkBuffalo New York

Bryna Cooper BAUniversity of OregonEugene Oregon

Luke CooperTexas AampMUniversityCollege Station Texas

Ingrid M Cordon PhDUniversity of California DavisDavis California

Kim Cornish PhDMonash UniversityVictoria Australia

Kathryn R Cullen MDUniversity of MinnesotaMinneapolis Minnesota

Geraldine Dawson PhDDuke UniversityDurham North Carolina

xiii

xiv Contributors

Brianna Delker MSUniversity of OregonEugene Oregon

Richard A Depue PhDCornell UniversityIthaca New York

Thomas J Dishion PhDArizona State UniversityTempe Arizona

Brianna Doherty BS MScUniversity of OxfordOxford England

Margaret W Dyson PhDUniversity of California San DiegoLa Jolla California

Philip A Fisher PhDUniversity of OregonEugene Oregon

Peter Fonagy OBE PhD FMedSci FBAUniversity College LondonLondon United Kingdom

Deborah Goldfarb JDUniversity of California DavisDavis California

Gail S Goodman PhDUniversity of California DavisDavis California

Sandra M Goulding MPHMAEmory UniversityAtlanta Georgia

Cathryn Gordon Green BAMcGill UniversityMontreal Canada

Lauren D Gulley MAUniversity of DenverDenver Colorado

Benjamin L Hankin PhDUniversity of DenverDenver Colorado

Iseli G Hernandez BANorthwestern UniversityChicago Illinois

Kathrin Herzhoff MANorthwestern University

Chicago IllinoisHouston Texas

MaryM Heitzeg PhDUniversity of MichiganAnn Arbor Michigan

Brian M Hicks PhDUniversity of MichiganAnn Arbor Michigan

Andrea Hussong PhDUniversity of North CarolinaChapel Hill North Carolina

Grace Iarocci PhDSimon Fraser UniversityBurnaby Canada

Annette Karmiloff-Smith CBE FBAFMedSci MAE CPscyhol

Birkbeck University of LondonLondon United Kingdom

Kevin P Kennedy BAUniversity of CaliforniaBerkeley California

Bonnie Klimes-Dougan PhDUniversity of MinnesotaMinneapolis Minnesota

Oriane Landry PhDLaTrobe UniversityBendigo Australia

Jennifer E Lansford PhDDuke UniversityDurham North Carolina

Mark F Lenzenweger PhDState University of New YorkBinghamton New YorkandWeill Cornell Medical CollegeNew York New York

Leslie D Leve PhDUniversity of OregonEugene Oregon

Alicia F Lieberman PhDUniversity of California San FranciscoSan Francisco California

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 3: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

This book is printed on acid-free paper

Copyright copy 2016 by John Wiley amp Sons Inc All rights reserved

Published by John Wiley amp Sons Inc Hoboken New Jersey

Published simultaneously in Canada

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Library of Congress Cataloging-in-Publication Data

Developmental psychopathology editor Dante Cicchetti ndash Third editionpages cm

Includes indexISBN 978-1-118-12087-3 (volume 1 cloth alk paper) ndash ISBN 978-1-118-12091-0 (volume 2 alk paper) ndash ISBN 978-1-118-12092-7

(volume 3 alk paper) ndash ISBN 978-1-118-12093-4 (volume 4 alk paper) 1 Mental illnessndashEtiology 2 Developmental psychology3 Mental illnessndashRisk factors 4 Adjustment (Psychology) I Cicchetti DanteRC4544D483 201661689ndashdc23

2015018216

Printed in the United States of America

10 9 8 7 6 5 4 3 2 1

These volumes are dedicated to Marianne Gerschel in recognitionof her great vision and staunch support of the field

of developmental psychopathology

Contents

Preface to Developmental Psychopathology Third Edition xiDante Cicchetti

Contributors xiii

1 DEVELOPMENTS IN THE DEVELOPMENTAL APPROACH TO INTELLECTUALDISABILITY 1Jacob A Burack Natalie Russo Cathryn Gordon Green Oriane Landry and Grace Iarocci

2 FRAGILE X SYNDROME AS AMULTILEVEL MODEL FOR UNDERSTANDINGBEHAVIORALLY DEFINED DISORDERS 68Annette Karmiloff-Smith Brianna Doherty Kim Cornish and Gaia Scerif

3 AUTISM SPECTRUM DISORDERS 81Raphael Bernier and Geraldine Dawson

4 JOINT ATTENTION AND THE SOCIAL PHENOTYPE OF AUTISM SPECTRUM DISORDERA PERSPECTIVE FROM DEVELOPMENTAL PSYCHOPATHOLOGY 116Amy Vaughan Van Hecke Tasha Oswald and Peter Mundy

5 EXPLICATING THE ldquoDEVELOPMENTALrdquo IN PRESCHOOL PSYCHOPATHOLOGY 152Sara J Bufferd Margaret W Dyson Iseli G Hernandez and Lauren S Wakschlag

6 THE DEVELOPMENT OF EMOTION REGULATION IMPLICATIONS FOR CHILDADJUSTMENT 187Susan D Calkins and Nicole B Perry

7 INTERPERSONAL THEORIES OF DEVELOPMENTAL PSYCHOPATHOLOGY 243Karen D Rudolph Jennifer E Lansford and Philip C Rodkin

8 COGNITIVE RISKS IN DEVELOPMENTAL PSYCHOPATHOLOGY 312Benjamin L Hankin Hannah R Snyder and Lauren D Gulley

vii

viii Contents

9 TRAUMATIC STRESS FROM AMULTILEVEL DEVELOPMENTAL PSYCHOPATHOLOGYPERSPECTIVE 386J Douglas Bremner

10 CHILDHOOD EXPOSURE TO INTERPERSONAL TRAUMA 425Alicia F Lieberman and Ann T Chu

11 CHILDMALTREATMENT AND DEVELOPMENTAL PSYCHOPATHOLOGY A MULTILEVELPERSPECTIVE 457Dante Cicchetti and Sheree L Toth

12 A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVE ON FOSTER CARERESEARCH 513Philip A Fisher Leslie D Leve Brianna Delker Leslie E Roos and Bryna Cooper

13 MEMORY DEVELOPMENT EMOTION REGULATION AND TRAUMA-RELATEDPSYCHOPATHOLOGY 555Gail S Goodman Deborah Goldfarb Jodi A Quas Rachel K Narr Helen Milojevich and Ingrid M Cordon

14 ATTENTION AND IMPULSIVITY 591Joel T Nigg

15 THE DEVELOPMENT AND ECOLOGY OF ANTISOCIAL BEHAVIOR LINKING ETIOLOGYPREVENTION AND TREATMENT 647Thomas J Dishion and Gerald R Patterson

16 NARCISSISM 679Sander Thomaes and Eddie Brummelman

17 A MULTILEVEL PERSPECTIVE ON THE DEVELOPMENT OF BORDERLINEPERSONALITY DISORDER 726Peter Fonagy and Patrick Luyten

18 ALCOHOL USE AND THE ALCOHOL USE DISORDERS OVER THE LIFE COURSEA CROSS-LEVEL DEVELOPMENTAL REVIEW 793Robert A Zucker Brian M Hicks and Mary M Heitzeg

19 SUBSTANCE USE AND SUBSTANCE USE DISORDERS 833Laurie Chassin Craig R Colder Andrea Hussong and Kenneth J Sher

20 BIPOLAR DISORDER FROM A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVEFOCUSING ON PHENOMENOLOGY ETIOLOGY AND NEUROBIOLOGY 898Bonnie Klimes-Dougan Kevin P Kennedy and Kathryn R Cullen

21 CHILDHOOD SCHIZOPHRENIA 950Rochelle Caplan

Contents ix

22 MULTILEVEL APPROACHES TO SCHIZOPHRENIA AND OTHER PSYCHOTICDISORDERS THE BIOBEHAVIORAL INTERFACE 997Elaine F Walker Arthur T Ryan Katrina C Bridgman Goines Derek M Novacek Sandra M GouldingJoy L Brasfield Allison Macdonald and Hanan D Trotman

23 TOWARD A UNIFYING PERSPECTIVE ON PERSONALITY PATHOLOGY ACROSSTHE LIFE SPAN 1039Jennifer L Tackett Kathrin Herzhoff Steve Balsis and Luke Cooper

24 TOWARD A DEVELOPMENTAL PSYCHOPATHOLOGY OF PERSONALITY DISTURBANCEA NEUROBEHAVIORAL DIMENSIONALMODEL INCORPORATING GENETICENVIRONMENTAL AND EPIGENETIC FACTORS 1079Mark F Lenzenweger and Richard A Depue

Author Index 1111

Subject Index 1189

Preface to Developmental Psychopathology Third Edition

A decade has passed since the second edition of Devel-opmental Psychopathology was published The two prioreditions (Cicchetti amp Cohen 1995 2006) have been veryinfluential in the growth of the field of developmentalpsychopathology The volumes have been highly cited inthe literature and have served as an important resource fordevelopmental scientists and prevention and interventionresearchers alike In the present third edition we haveexpanded from the three volumes contained in the secondedition to four volumes The increased number of volumesin this current edition reflects the continued knowledgegains that have occurred in the field over the past decade

A not insignificant contributor to this growth can befound in the very principles of the discipline (Cicchetti1984 1990 1993 Cicchetti amp Sroufe 2000 Cicchetti ampToth 1991 2009 Rutter amp Sroufe 2000 Sroufe amp Rutter1984) Theorists researchers and prevention scientists inthe field of developmental psychopathology adhere to alife span framework to elucidate the numerous processesand mechanisms that can contribute to the developmentof mental disorders in high-risk individuals as well asthose operative in individuals who already have manifestedpsychological disturbances or who have averted such disor-ders despite their high-risk status (Cicchetti 1993 Masten2014 Rutter 1986 1987 2012) Not only is knowledge ofnormal genetic neurobiological physiological hormonalpsychological and social processes very helpful for under-standing preventing and treating psychopathology butalso deviations from and distortions of normal develop-ment that are seen in pathological processes indicate ininnovative ways how normal development may be bet-ter investigated and understood Similarly informationobtained from investigations of experiments of naturehigh-risk conditions and psychopathology can augmentthe comprehension of normal development (Cicchetti1984 1990 1993 Rutter 1986 Rutter amp Garmezy 1983Sroufe 1990 Weiss 1969)

Another factor that has expedited growth within thefield of developmental psychopathology has been its abilityto incorporate knowledge from diverse disciplines and to

encourage interdisciplinary and translational research(Cicchetti amp Gunnar 2009 Cicchetti amp Toth 2006) Inkeeping with its integrative focus contributions to develop-mental psychopathology have come from many disciplinesof the biological and social sciences A wide array ofcontent areas scientific disciplines and methodologies hasbeen germane Risk and protective factors and processeshave been identified and validated at multiple levels ofanalysis and in multiple domains

The increased emphasis on a multilevel dynamic sys-tems approach to psychopathology and resilience theincreased attention paid to genendashenvironment interplay inthe development of psychopathology and resilience andthe application of a multiple levels of analysis develop-mental perspective to mental illnesses that have tradi-tionally been examined nondevelopmentally (eg bipolardisorder schizophrenia and the personality disorders)not only have contributed to a deeper understandingof the dysfunctions but also have educated the publicabout the causes and consequences of mental disorder(see Cicchetti amp Cannon 1999 Cicchetti amp Crick 2009a2009b Miklowitz amp Cicchetti 2006 2010 Tackett ampSharp 2014)

Advances in genomics GxE interactions and epigenet-ics growth in our understanding of neurobiology neuralplasticity and resilience and progress in the developmentof methodological and technological tools including brainimaging neural circuitry hormone assays immunologysocial and environmental influences on brain developmentand statistical analysis of developmental change pavethe way for interdisciplinary and for multiple levels ofanalysis research programs that will significantly increasethe knowledge base of the development and course ofmaladaptation psychopathology and resilience More-over randomized control prevention and interventiontrials are being conducted based on theoretical modelsand efforts to elucidate the mechanisms and processes con-tributing to developmental change at both the biologicaland psychological levels (Belsky amp van IJzendoorn 2015Cicchetti amp Gunnar 2008)

xi

xii Preface to Developmental Psychopathology Third Edition

Despite the significant advances that have occurred inthe field of developmental psychopathology much impor-tant work lies ahead Undoubtedly these future develop-ments will build on the venerable contributions of the pasthowever as work in the field becomes increasingly interdis-ciplinary multilevel and technologically sophisticated it isessential that even more emphasis be directed toward theprocess of development (Harter 2006 Sroufe 2007 2013)It is not only genes and environments but also the cumula-tive developmental history of the individual that influenceshow future development will unfold (Sroufe 2007 2013)

Developmental psychopathologists have incorporatedconcepts and methods derived from other disciplinaryendeavors that are too often isolated from each otherthereby generating advances in knowledge that might havebeen missed in the absence of cross-disciplinary dialogueThe continuation and elaboration of the mutually enrich-ing interchanges that have occurred within and acrossdisciplines interested in normal and abnormal develop-ment not only will enhance the science of developmentalpsychopathology but also will increase the benefits to bederived for individuals with high-risk conditions or mentaldisorders families and society as a whole

Dante Cicchetti PhDMinneapolis MN

January 2015

REFERENCES

Belsky J amp van IJzendoorn M (2015) What works for whom Geneticmoderation of intervention efficacy [Special Section] Developmentand Psychopathology 27 1ndash6

Cicchetti D (1984) The emergence of developmental psychopathologyChild Development 55(1) 1ndash7

Cicchetti D (1990) A historical perspective on the discipline of devel-opmental psychopathology In J Rolf A Masten D Cicchetti KNuechterlein amp S Weintraub (Eds) Risk and protective factorsin the development of psychopathology (pp 2ndash28) New York NYCambridge University Press

Cicchetti D (1993) Developmental psychopathology Reactions reflec-tions projections Developmental Review 13 471ndash502

Cicchetti D amp Cannon T (1999) Neurodevelopmental processes in theontogenesis and epigenesis of psychopathologyDevelopment and Psy-chopathology 11 375ndash393

Cicchetti D amp Cohen D (Eds) (1995)Developmental psychopathology(Vols 1ndash2) New York NY Wiley

Cicchetti D amp Cohen D (Eds) (2006)Developmental psychopathology(2nd ed Vols 1ndash3) New York NY Wiley

Cicchetti D amp Crick N R (Eds) (2009a) Precursors of anddiverse pathways to personality disorder in children and adoles-cents [Special Issue Part 1]Development and Psychopathology 21(3)683ndash1030

Cicchetti D amp Crick N R (Eds) (2009b) Precursors of and diversepathways to personality disorder in children and adolescents [SpecialIssue Part 2] Development and Psychopathology 21(4) 1031ndash1381

Cicchetti D amp Gunnar M R (2008) Integrating biological processesinto the design and evaluation of preventive interventions Develop-ment and Psychopathology 20 737ndash743

Cicchetti D amp Gunnar M R (Eds) (2009) Meeting the challenge oftranslational research in child psychology Minnesota symposia onchild psychology (Vol 35) New York NY Wiley

Cicchetti D amp Sroufe L A (2000) The past as prologue to the futureThe times theyrsquove been a changinrsquoDevelopment and Psychopathology12 255ndash264

Cicchetti D amp Toth S L (1991) The making of a developmental psy-chopathologist In J Cantor C Spiker amp L Lipsitt (Eds) Childbehavior and development Training for diversity (pp 34ndash72)NorwoodNJ Ablex

Cicchetti D amp Toth S L (Eds) (2006) Translational research in devel-opmental psychopathology [Special Issue] Development and Psy-chopathology 18(3) 619ndash933

Cicchetti D amp Toth S L (2009) The past achievements and futurepromises of developmental psychopathology The coming of age ofa discipline Journal of Child Psychology and Psychiatry 50 16ndash25

Harter S (2006) Self-processes and developmental psychopathology InD Cicchetti amp D Cohen (Eds) Developmental psychopathology (2nded 370ndash418) New York NY Wiley

Masten A S (2014) Ordinary magic Resilience in development NewYork NY Guilford Publications Inc

Miklowitz D J amp Cicchetti D (2006) Toward a life span developmen-tal psychopathology perspective on bipolar disorderDevelopment andPsychopathology 18 935ndash938

Miklowitz D J amp Cicchetti D (Eds) (2010) Bipolar disorder A devel-opmental psychopathology approach New York NY Guilford

Rutter M (1986) Child psychiatry The interface between clinical anddevelopmental research Psychological Medicine 16 151ndash169

Rutter M (1987) Psychosocial resilience and protective mechanismsAmerican Journal of Orthopsychiatry 57 316ndash331

Rutter M (2012) Resilience as a dynamic conceptDevelopment and Psy-chopathology 24 335ndash344

RutterM ampGarmezyN (1983)Developmental psychopathology In EM Hetherington (Ed) Handbook of child psychology (pp 774ndash911)New York NY Wiley

Rutter M amp Sroufe L A (2000) Developmental psychopathologyConcepts and challenges Development and Psychopathology 12265ndash296

Sroufe L A (1990) Considering normal and abnormal together Theessence of developmental psychopathology Development and Psy-chopathology 2 335ndash347

Sroufe L A (2007) The place of development in developmental psy-chopathology In A Masten (Ed)Multilevel dynamics in developmen-tal psychopathology pathways to the future The Minnesota symposiaon child psychology (pp 285ndash299) Mahwah NJ Erlbaum

Sroufe L A (2013) The promise of developmental psychopathologyDevelopment and Psychopathology 25 1215ndash1224

Sroufe L A amp Rutter M (1984) The domain of developmental psy-chopathology Child Development 55 17ndash29

Tackett J L amp Sharp C (2014) A developmental psychopathology per-spective on personality disorder [Special Issue] Journal of PersonalityDisorders 28 1ndash179

Weiss P (1969) Principles of development New York NY Hafner

Contributors

Steve Balsis PhDTexas AampMUniversityCollege Station Texas

Raphael Bernier PhDUniversity of WashingtonSeattle Washington

Joy L Brasfield MAEmory UniversityAtlanta Georgia

J Douglas Bremner MDEmory UniversityAtlanta Georgia

Katrina C Bridgman Goines MAEmory UniversityAtlanta Georgia

Eddie Brummelman MAUtrecht UniversityUtrecht Netherlands

Sara J Bufferd PhDCalifornia State University SanMarcosSanMarcos California

Jacob A Burack PhDMcGill UniversityMontreal CanadaandHocircpital Riviegravere-des-PrairiesMontreal Canada

Susan D Calkins PhDUniversity of North CarolinaGreensboro North Carolina

Rochelle Caplan MDUniversity of CaliforniaLos Angeles California

Laurie Chassin PhDArizona State UniversityTempe Arizona

Ann T Chu PhDA Better Way IncSan Francisco California

Dante Cicchetti PhDInstitute of Child DevelopmentUniversity of MinnesotaMinneapolis Minnesota

Craig R Colder PhDUniversity at BuffaloState University of New YorkBuffalo New York

Bryna Cooper BAUniversity of OregonEugene Oregon

Luke CooperTexas AampMUniversityCollege Station Texas

Ingrid M Cordon PhDUniversity of California DavisDavis California

Kim Cornish PhDMonash UniversityVictoria Australia

Kathryn R Cullen MDUniversity of MinnesotaMinneapolis Minnesota

Geraldine Dawson PhDDuke UniversityDurham North Carolina

xiii

xiv Contributors

Brianna Delker MSUniversity of OregonEugene Oregon

Richard A Depue PhDCornell UniversityIthaca New York

Thomas J Dishion PhDArizona State UniversityTempe Arizona

Brianna Doherty BS MScUniversity of OxfordOxford England

Margaret W Dyson PhDUniversity of California San DiegoLa Jolla California

Philip A Fisher PhDUniversity of OregonEugene Oregon

Peter Fonagy OBE PhD FMedSci FBAUniversity College LondonLondon United Kingdom

Deborah Goldfarb JDUniversity of California DavisDavis California

Gail S Goodman PhDUniversity of California DavisDavis California

Sandra M Goulding MPHMAEmory UniversityAtlanta Georgia

Cathryn Gordon Green BAMcGill UniversityMontreal Canada

Lauren D Gulley MAUniversity of DenverDenver Colorado

Benjamin L Hankin PhDUniversity of DenverDenver Colorado

Iseli G Hernandez BANorthwestern UniversityChicago Illinois

Kathrin Herzhoff MANorthwestern University

Chicago IllinoisHouston Texas

MaryM Heitzeg PhDUniversity of MichiganAnn Arbor Michigan

Brian M Hicks PhDUniversity of MichiganAnn Arbor Michigan

Andrea Hussong PhDUniversity of North CarolinaChapel Hill North Carolina

Grace Iarocci PhDSimon Fraser UniversityBurnaby Canada

Annette Karmiloff-Smith CBE FBAFMedSci MAE CPscyhol

Birkbeck University of LondonLondon United Kingdom

Kevin P Kennedy BAUniversity of CaliforniaBerkeley California

Bonnie Klimes-Dougan PhDUniversity of MinnesotaMinneapolis Minnesota

Oriane Landry PhDLaTrobe UniversityBendigo Australia

Jennifer E Lansford PhDDuke UniversityDurham North Carolina

Mark F Lenzenweger PhDState University of New YorkBinghamton New YorkandWeill Cornell Medical CollegeNew York New York

Leslie D Leve PhDUniversity of OregonEugene Oregon

Alicia F Lieberman PhDUniversity of California San FranciscoSan Francisco California

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 4: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

These volumes are dedicated to Marianne Gerschel in recognitionof her great vision and staunch support of the field

of developmental psychopathology

Contents

Preface to Developmental Psychopathology Third Edition xiDante Cicchetti

Contributors xiii

1 DEVELOPMENTS IN THE DEVELOPMENTAL APPROACH TO INTELLECTUALDISABILITY 1Jacob A Burack Natalie Russo Cathryn Gordon Green Oriane Landry and Grace Iarocci

2 FRAGILE X SYNDROME AS AMULTILEVEL MODEL FOR UNDERSTANDINGBEHAVIORALLY DEFINED DISORDERS 68Annette Karmiloff-Smith Brianna Doherty Kim Cornish and Gaia Scerif

3 AUTISM SPECTRUM DISORDERS 81Raphael Bernier and Geraldine Dawson

4 JOINT ATTENTION AND THE SOCIAL PHENOTYPE OF AUTISM SPECTRUM DISORDERA PERSPECTIVE FROM DEVELOPMENTAL PSYCHOPATHOLOGY 116Amy Vaughan Van Hecke Tasha Oswald and Peter Mundy

5 EXPLICATING THE ldquoDEVELOPMENTALrdquo IN PRESCHOOL PSYCHOPATHOLOGY 152Sara J Bufferd Margaret W Dyson Iseli G Hernandez and Lauren S Wakschlag

6 THE DEVELOPMENT OF EMOTION REGULATION IMPLICATIONS FOR CHILDADJUSTMENT 187Susan D Calkins and Nicole B Perry

7 INTERPERSONAL THEORIES OF DEVELOPMENTAL PSYCHOPATHOLOGY 243Karen D Rudolph Jennifer E Lansford and Philip C Rodkin

8 COGNITIVE RISKS IN DEVELOPMENTAL PSYCHOPATHOLOGY 312Benjamin L Hankin Hannah R Snyder and Lauren D Gulley

vii

viii Contents

9 TRAUMATIC STRESS FROM AMULTILEVEL DEVELOPMENTAL PSYCHOPATHOLOGYPERSPECTIVE 386J Douglas Bremner

10 CHILDHOOD EXPOSURE TO INTERPERSONAL TRAUMA 425Alicia F Lieberman and Ann T Chu

11 CHILDMALTREATMENT AND DEVELOPMENTAL PSYCHOPATHOLOGY A MULTILEVELPERSPECTIVE 457Dante Cicchetti and Sheree L Toth

12 A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVE ON FOSTER CARERESEARCH 513Philip A Fisher Leslie D Leve Brianna Delker Leslie E Roos and Bryna Cooper

13 MEMORY DEVELOPMENT EMOTION REGULATION AND TRAUMA-RELATEDPSYCHOPATHOLOGY 555Gail S Goodman Deborah Goldfarb Jodi A Quas Rachel K Narr Helen Milojevich and Ingrid M Cordon

14 ATTENTION AND IMPULSIVITY 591Joel T Nigg

15 THE DEVELOPMENT AND ECOLOGY OF ANTISOCIAL BEHAVIOR LINKING ETIOLOGYPREVENTION AND TREATMENT 647Thomas J Dishion and Gerald R Patterson

16 NARCISSISM 679Sander Thomaes and Eddie Brummelman

17 A MULTILEVEL PERSPECTIVE ON THE DEVELOPMENT OF BORDERLINEPERSONALITY DISORDER 726Peter Fonagy and Patrick Luyten

18 ALCOHOL USE AND THE ALCOHOL USE DISORDERS OVER THE LIFE COURSEA CROSS-LEVEL DEVELOPMENTAL REVIEW 793Robert A Zucker Brian M Hicks and Mary M Heitzeg

19 SUBSTANCE USE AND SUBSTANCE USE DISORDERS 833Laurie Chassin Craig R Colder Andrea Hussong and Kenneth J Sher

20 BIPOLAR DISORDER FROM A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVEFOCUSING ON PHENOMENOLOGY ETIOLOGY AND NEUROBIOLOGY 898Bonnie Klimes-Dougan Kevin P Kennedy and Kathryn R Cullen

21 CHILDHOOD SCHIZOPHRENIA 950Rochelle Caplan

Contents ix

22 MULTILEVEL APPROACHES TO SCHIZOPHRENIA AND OTHER PSYCHOTICDISORDERS THE BIOBEHAVIORAL INTERFACE 997Elaine F Walker Arthur T Ryan Katrina C Bridgman Goines Derek M Novacek Sandra M GouldingJoy L Brasfield Allison Macdonald and Hanan D Trotman

23 TOWARD A UNIFYING PERSPECTIVE ON PERSONALITY PATHOLOGY ACROSSTHE LIFE SPAN 1039Jennifer L Tackett Kathrin Herzhoff Steve Balsis and Luke Cooper

24 TOWARD A DEVELOPMENTAL PSYCHOPATHOLOGY OF PERSONALITY DISTURBANCEA NEUROBEHAVIORAL DIMENSIONALMODEL INCORPORATING GENETICENVIRONMENTAL AND EPIGENETIC FACTORS 1079Mark F Lenzenweger and Richard A Depue

Author Index 1111

Subject Index 1189

Preface to Developmental Psychopathology Third Edition

A decade has passed since the second edition of Devel-opmental Psychopathology was published The two prioreditions (Cicchetti amp Cohen 1995 2006) have been veryinfluential in the growth of the field of developmentalpsychopathology The volumes have been highly cited inthe literature and have served as an important resource fordevelopmental scientists and prevention and interventionresearchers alike In the present third edition we haveexpanded from the three volumes contained in the secondedition to four volumes The increased number of volumesin this current edition reflects the continued knowledgegains that have occurred in the field over the past decade

A not insignificant contributor to this growth can befound in the very principles of the discipline (Cicchetti1984 1990 1993 Cicchetti amp Sroufe 2000 Cicchetti ampToth 1991 2009 Rutter amp Sroufe 2000 Sroufe amp Rutter1984) Theorists researchers and prevention scientists inthe field of developmental psychopathology adhere to alife span framework to elucidate the numerous processesand mechanisms that can contribute to the developmentof mental disorders in high-risk individuals as well asthose operative in individuals who already have manifestedpsychological disturbances or who have averted such disor-ders despite their high-risk status (Cicchetti 1993 Masten2014 Rutter 1986 1987 2012) Not only is knowledge ofnormal genetic neurobiological physiological hormonalpsychological and social processes very helpful for under-standing preventing and treating psychopathology butalso deviations from and distortions of normal develop-ment that are seen in pathological processes indicate ininnovative ways how normal development may be bet-ter investigated and understood Similarly informationobtained from investigations of experiments of naturehigh-risk conditions and psychopathology can augmentthe comprehension of normal development (Cicchetti1984 1990 1993 Rutter 1986 Rutter amp Garmezy 1983Sroufe 1990 Weiss 1969)

Another factor that has expedited growth within thefield of developmental psychopathology has been its abilityto incorporate knowledge from diverse disciplines and to

encourage interdisciplinary and translational research(Cicchetti amp Gunnar 2009 Cicchetti amp Toth 2006) Inkeeping with its integrative focus contributions to develop-mental psychopathology have come from many disciplinesof the biological and social sciences A wide array ofcontent areas scientific disciplines and methodologies hasbeen germane Risk and protective factors and processeshave been identified and validated at multiple levels ofanalysis and in multiple domains

The increased emphasis on a multilevel dynamic sys-tems approach to psychopathology and resilience theincreased attention paid to genendashenvironment interplay inthe development of psychopathology and resilience andthe application of a multiple levels of analysis develop-mental perspective to mental illnesses that have tradi-tionally been examined nondevelopmentally (eg bipolardisorder schizophrenia and the personality disorders)not only have contributed to a deeper understandingof the dysfunctions but also have educated the publicabout the causes and consequences of mental disorder(see Cicchetti amp Cannon 1999 Cicchetti amp Crick 2009a2009b Miklowitz amp Cicchetti 2006 2010 Tackett ampSharp 2014)

Advances in genomics GxE interactions and epigenet-ics growth in our understanding of neurobiology neuralplasticity and resilience and progress in the developmentof methodological and technological tools including brainimaging neural circuitry hormone assays immunologysocial and environmental influences on brain developmentand statistical analysis of developmental change pavethe way for interdisciplinary and for multiple levels ofanalysis research programs that will significantly increasethe knowledge base of the development and course ofmaladaptation psychopathology and resilience More-over randomized control prevention and interventiontrials are being conducted based on theoretical modelsand efforts to elucidate the mechanisms and processes con-tributing to developmental change at both the biologicaland psychological levels (Belsky amp van IJzendoorn 2015Cicchetti amp Gunnar 2008)

xi

xii Preface to Developmental Psychopathology Third Edition

Despite the significant advances that have occurred inthe field of developmental psychopathology much impor-tant work lies ahead Undoubtedly these future develop-ments will build on the venerable contributions of the pasthowever as work in the field becomes increasingly interdis-ciplinary multilevel and technologically sophisticated it isessential that even more emphasis be directed toward theprocess of development (Harter 2006 Sroufe 2007 2013)It is not only genes and environments but also the cumula-tive developmental history of the individual that influenceshow future development will unfold (Sroufe 2007 2013)

Developmental psychopathologists have incorporatedconcepts and methods derived from other disciplinaryendeavors that are too often isolated from each otherthereby generating advances in knowledge that might havebeen missed in the absence of cross-disciplinary dialogueThe continuation and elaboration of the mutually enrich-ing interchanges that have occurred within and acrossdisciplines interested in normal and abnormal develop-ment not only will enhance the science of developmentalpsychopathology but also will increase the benefits to bederived for individuals with high-risk conditions or mentaldisorders families and society as a whole

Dante Cicchetti PhDMinneapolis MN

January 2015

REFERENCES

Belsky J amp van IJzendoorn M (2015) What works for whom Geneticmoderation of intervention efficacy [Special Section] Developmentand Psychopathology 27 1ndash6

Cicchetti D (1984) The emergence of developmental psychopathologyChild Development 55(1) 1ndash7

Cicchetti D (1990) A historical perspective on the discipline of devel-opmental psychopathology In J Rolf A Masten D Cicchetti KNuechterlein amp S Weintraub (Eds) Risk and protective factorsin the development of psychopathology (pp 2ndash28) New York NYCambridge University Press

Cicchetti D (1993) Developmental psychopathology Reactions reflec-tions projections Developmental Review 13 471ndash502

Cicchetti D amp Cannon T (1999) Neurodevelopmental processes in theontogenesis and epigenesis of psychopathologyDevelopment and Psy-chopathology 11 375ndash393

Cicchetti D amp Cohen D (Eds) (1995)Developmental psychopathology(Vols 1ndash2) New York NY Wiley

Cicchetti D amp Cohen D (Eds) (2006)Developmental psychopathology(2nd ed Vols 1ndash3) New York NY Wiley

Cicchetti D amp Crick N R (Eds) (2009a) Precursors of anddiverse pathways to personality disorder in children and adoles-cents [Special Issue Part 1]Development and Psychopathology 21(3)683ndash1030

Cicchetti D amp Crick N R (Eds) (2009b) Precursors of and diversepathways to personality disorder in children and adolescents [SpecialIssue Part 2] Development and Psychopathology 21(4) 1031ndash1381

Cicchetti D amp Gunnar M R (2008) Integrating biological processesinto the design and evaluation of preventive interventions Develop-ment and Psychopathology 20 737ndash743

Cicchetti D amp Gunnar M R (Eds) (2009) Meeting the challenge oftranslational research in child psychology Minnesota symposia onchild psychology (Vol 35) New York NY Wiley

Cicchetti D amp Sroufe L A (2000) The past as prologue to the futureThe times theyrsquove been a changinrsquoDevelopment and Psychopathology12 255ndash264

Cicchetti D amp Toth S L (1991) The making of a developmental psy-chopathologist In J Cantor C Spiker amp L Lipsitt (Eds) Childbehavior and development Training for diversity (pp 34ndash72)NorwoodNJ Ablex

Cicchetti D amp Toth S L (Eds) (2006) Translational research in devel-opmental psychopathology [Special Issue] Development and Psy-chopathology 18(3) 619ndash933

Cicchetti D amp Toth S L (2009) The past achievements and futurepromises of developmental psychopathology The coming of age ofa discipline Journal of Child Psychology and Psychiatry 50 16ndash25

Harter S (2006) Self-processes and developmental psychopathology InD Cicchetti amp D Cohen (Eds) Developmental psychopathology (2nded 370ndash418) New York NY Wiley

Masten A S (2014) Ordinary magic Resilience in development NewYork NY Guilford Publications Inc

Miklowitz D J amp Cicchetti D (2006) Toward a life span developmen-tal psychopathology perspective on bipolar disorderDevelopment andPsychopathology 18 935ndash938

Miklowitz D J amp Cicchetti D (Eds) (2010) Bipolar disorder A devel-opmental psychopathology approach New York NY Guilford

Rutter M (1986) Child psychiatry The interface between clinical anddevelopmental research Psychological Medicine 16 151ndash169

Rutter M (1987) Psychosocial resilience and protective mechanismsAmerican Journal of Orthopsychiatry 57 316ndash331

Rutter M (2012) Resilience as a dynamic conceptDevelopment and Psy-chopathology 24 335ndash344

RutterM ampGarmezyN (1983)Developmental psychopathology In EM Hetherington (Ed) Handbook of child psychology (pp 774ndash911)New York NY Wiley

Rutter M amp Sroufe L A (2000) Developmental psychopathologyConcepts and challenges Development and Psychopathology 12265ndash296

Sroufe L A (1990) Considering normal and abnormal together Theessence of developmental psychopathology Development and Psy-chopathology 2 335ndash347

Sroufe L A (2007) The place of development in developmental psy-chopathology In A Masten (Ed)Multilevel dynamics in developmen-tal psychopathology pathways to the future The Minnesota symposiaon child psychology (pp 285ndash299) Mahwah NJ Erlbaum

Sroufe L A (2013) The promise of developmental psychopathologyDevelopment and Psychopathology 25 1215ndash1224

Sroufe L A amp Rutter M (1984) The domain of developmental psy-chopathology Child Development 55 17ndash29

Tackett J L amp Sharp C (2014) A developmental psychopathology per-spective on personality disorder [Special Issue] Journal of PersonalityDisorders 28 1ndash179

Weiss P (1969) Principles of development New York NY Hafner

Contributors

Steve Balsis PhDTexas AampMUniversityCollege Station Texas

Raphael Bernier PhDUniversity of WashingtonSeattle Washington

Joy L Brasfield MAEmory UniversityAtlanta Georgia

J Douglas Bremner MDEmory UniversityAtlanta Georgia

Katrina C Bridgman Goines MAEmory UniversityAtlanta Georgia

Eddie Brummelman MAUtrecht UniversityUtrecht Netherlands

Sara J Bufferd PhDCalifornia State University SanMarcosSanMarcos California

Jacob A Burack PhDMcGill UniversityMontreal CanadaandHocircpital Riviegravere-des-PrairiesMontreal Canada

Susan D Calkins PhDUniversity of North CarolinaGreensboro North Carolina

Rochelle Caplan MDUniversity of CaliforniaLos Angeles California

Laurie Chassin PhDArizona State UniversityTempe Arizona

Ann T Chu PhDA Better Way IncSan Francisco California

Dante Cicchetti PhDInstitute of Child DevelopmentUniversity of MinnesotaMinneapolis Minnesota

Craig R Colder PhDUniversity at BuffaloState University of New YorkBuffalo New York

Bryna Cooper BAUniversity of OregonEugene Oregon

Luke CooperTexas AampMUniversityCollege Station Texas

Ingrid M Cordon PhDUniversity of California DavisDavis California

Kim Cornish PhDMonash UniversityVictoria Australia

Kathryn R Cullen MDUniversity of MinnesotaMinneapolis Minnesota

Geraldine Dawson PhDDuke UniversityDurham North Carolina

xiii

xiv Contributors

Brianna Delker MSUniversity of OregonEugene Oregon

Richard A Depue PhDCornell UniversityIthaca New York

Thomas J Dishion PhDArizona State UniversityTempe Arizona

Brianna Doherty BS MScUniversity of OxfordOxford England

Margaret W Dyson PhDUniversity of California San DiegoLa Jolla California

Philip A Fisher PhDUniversity of OregonEugene Oregon

Peter Fonagy OBE PhD FMedSci FBAUniversity College LondonLondon United Kingdom

Deborah Goldfarb JDUniversity of California DavisDavis California

Gail S Goodman PhDUniversity of California DavisDavis California

Sandra M Goulding MPHMAEmory UniversityAtlanta Georgia

Cathryn Gordon Green BAMcGill UniversityMontreal Canada

Lauren D Gulley MAUniversity of DenverDenver Colorado

Benjamin L Hankin PhDUniversity of DenverDenver Colorado

Iseli G Hernandez BANorthwestern UniversityChicago Illinois

Kathrin Herzhoff MANorthwestern University

Chicago IllinoisHouston Texas

MaryM Heitzeg PhDUniversity of MichiganAnn Arbor Michigan

Brian M Hicks PhDUniversity of MichiganAnn Arbor Michigan

Andrea Hussong PhDUniversity of North CarolinaChapel Hill North Carolina

Grace Iarocci PhDSimon Fraser UniversityBurnaby Canada

Annette Karmiloff-Smith CBE FBAFMedSci MAE CPscyhol

Birkbeck University of LondonLondon United Kingdom

Kevin P Kennedy BAUniversity of CaliforniaBerkeley California

Bonnie Klimes-Dougan PhDUniversity of MinnesotaMinneapolis Minnesota

Oriane Landry PhDLaTrobe UniversityBendigo Australia

Jennifer E Lansford PhDDuke UniversityDurham North Carolina

Mark F Lenzenweger PhDState University of New YorkBinghamton New YorkandWeill Cornell Medical CollegeNew York New York

Leslie D Leve PhDUniversity of OregonEugene Oregon

Alicia F Lieberman PhDUniversity of California San FranciscoSan Francisco California

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 5: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

Contents

Preface to Developmental Psychopathology Third Edition xiDante Cicchetti

Contributors xiii

1 DEVELOPMENTS IN THE DEVELOPMENTAL APPROACH TO INTELLECTUALDISABILITY 1Jacob A Burack Natalie Russo Cathryn Gordon Green Oriane Landry and Grace Iarocci

2 FRAGILE X SYNDROME AS AMULTILEVEL MODEL FOR UNDERSTANDINGBEHAVIORALLY DEFINED DISORDERS 68Annette Karmiloff-Smith Brianna Doherty Kim Cornish and Gaia Scerif

3 AUTISM SPECTRUM DISORDERS 81Raphael Bernier and Geraldine Dawson

4 JOINT ATTENTION AND THE SOCIAL PHENOTYPE OF AUTISM SPECTRUM DISORDERA PERSPECTIVE FROM DEVELOPMENTAL PSYCHOPATHOLOGY 116Amy Vaughan Van Hecke Tasha Oswald and Peter Mundy

5 EXPLICATING THE ldquoDEVELOPMENTALrdquo IN PRESCHOOL PSYCHOPATHOLOGY 152Sara J Bufferd Margaret W Dyson Iseli G Hernandez and Lauren S Wakschlag

6 THE DEVELOPMENT OF EMOTION REGULATION IMPLICATIONS FOR CHILDADJUSTMENT 187Susan D Calkins and Nicole B Perry

7 INTERPERSONAL THEORIES OF DEVELOPMENTAL PSYCHOPATHOLOGY 243Karen D Rudolph Jennifer E Lansford and Philip C Rodkin

8 COGNITIVE RISKS IN DEVELOPMENTAL PSYCHOPATHOLOGY 312Benjamin L Hankin Hannah R Snyder and Lauren D Gulley

vii

viii Contents

9 TRAUMATIC STRESS FROM AMULTILEVEL DEVELOPMENTAL PSYCHOPATHOLOGYPERSPECTIVE 386J Douglas Bremner

10 CHILDHOOD EXPOSURE TO INTERPERSONAL TRAUMA 425Alicia F Lieberman and Ann T Chu

11 CHILDMALTREATMENT AND DEVELOPMENTAL PSYCHOPATHOLOGY A MULTILEVELPERSPECTIVE 457Dante Cicchetti and Sheree L Toth

12 A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVE ON FOSTER CARERESEARCH 513Philip A Fisher Leslie D Leve Brianna Delker Leslie E Roos and Bryna Cooper

13 MEMORY DEVELOPMENT EMOTION REGULATION AND TRAUMA-RELATEDPSYCHOPATHOLOGY 555Gail S Goodman Deborah Goldfarb Jodi A Quas Rachel K Narr Helen Milojevich and Ingrid M Cordon

14 ATTENTION AND IMPULSIVITY 591Joel T Nigg

15 THE DEVELOPMENT AND ECOLOGY OF ANTISOCIAL BEHAVIOR LINKING ETIOLOGYPREVENTION AND TREATMENT 647Thomas J Dishion and Gerald R Patterson

16 NARCISSISM 679Sander Thomaes and Eddie Brummelman

17 A MULTILEVEL PERSPECTIVE ON THE DEVELOPMENT OF BORDERLINEPERSONALITY DISORDER 726Peter Fonagy and Patrick Luyten

18 ALCOHOL USE AND THE ALCOHOL USE DISORDERS OVER THE LIFE COURSEA CROSS-LEVEL DEVELOPMENTAL REVIEW 793Robert A Zucker Brian M Hicks and Mary M Heitzeg

19 SUBSTANCE USE AND SUBSTANCE USE DISORDERS 833Laurie Chassin Craig R Colder Andrea Hussong and Kenneth J Sher

20 BIPOLAR DISORDER FROM A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVEFOCUSING ON PHENOMENOLOGY ETIOLOGY AND NEUROBIOLOGY 898Bonnie Klimes-Dougan Kevin P Kennedy and Kathryn R Cullen

21 CHILDHOOD SCHIZOPHRENIA 950Rochelle Caplan

Contents ix

22 MULTILEVEL APPROACHES TO SCHIZOPHRENIA AND OTHER PSYCHOTICDISORDERS THE BIOBEHAVIORAL INTERFACE 997Elaine F Walker Arthur T Ryan Katrina C Bridgman Goines Derek M Novacek Sandra M GouldingJoy L Brasfield Allison Macdonald and Hanan D Trotman

23 TOWARD A UNIFYING PERSPECTIVE ON PERSONALITY PATHOLOGY ACROSSTHE LIFE SPAN 1039Jennifer L Tackett Kathrin Herzhoff Steve Balsis and Luke Cooper

24 TOWARD A DEVELOPMENTAL PSYCHOPATHOLOGY OF PERSONALITY DISTURBANCEA NEUROBEHAVIORAL DIMENSIONALMODEL INCORPORATING GENETICENVIRONMENTAL AND EPIGENETIC FACTORS 1079Mark F Lenzenweger and Richard A Depue

Author Index 1111

Subject Index 1189

Preface to Developmental Psychopathology Third Edition

A decade has passed since the second edition of Devel-opmental Psychopathology was published The two prioreditions (Cicchetti amp Cohen 1995 2006) have been veryinfluential in the growth of the field of developmentalpsychopathology The volumes have been highly cited inthe literature and have served as an important resource fordevelopmental scientists and prevention and interventionresearchers alike In the present third edition we haveexpanded from the three volumes contained in the secondedition to four volumes The increased number of volumesin this current edition reflects the continued knowledgegains that have occurred in the field over the past decade

A not insignificant contributor to this growth can befound in the very principles of the discipline (Cicchetti1984 1990 1993 Cicchetti amp Sroufe 2000 Cicchetti ampToth 1991 2009 Rutter amp Sroufe 2000 Sroufe amp Rutter1984) Theorists researchers and prevention scientists inthe field of developmental psychopathology adhere to alife span framework to elucidate the numerous processesand mechanisms that can contribute to the developmentof mental disorders in high-risk individuals as well asthose operative in individuals who already have manifestedpsychological disturbances or who have averted such disor-ders despite their high-risk status (Cicchetti 1993 Masten2014 Rutter 1986 1987 2012) Not only is knowledge ofnormal genetic neurobiological physiological hormonalpsychological and social processes very helpful for under-standing preventing and treating psychopathology butalso deviations from and distortions of normal develop-ment that are seen in pathological processes indicate ininnovative ways how normal development may be bet-ter investigated and understood Similarly informationobtained from investigations of experiments of naturehigh-risk conditions and psychopathology can augmentthe comprehension of normal development (Cicchetti1984 1990 1993 Rutter 1986 Rutter amp Garmezy 1983Sroufe 1990 Weiss 1969)

Another factor that has expedited growth within thefield of developmental psychopathology has been its abilityto incorporate knowledge from diverse disciplines and to

encourage interdisciplinary and translational research(Cicchetti amp Gunnar 2009 Cicchetti amp Toth 2006) Inkeeping with its integrative focus contributions to develop-mental psychopathology have come from many disciplinesof the biological and social sciences A wide array ofcontent areas scientific disciplines and methodologies hasbeen germane Risk and protective factors and processeshave been identified and validated at multiple levels ofanalysis and in multiple domains

The increased emphasis on a multilevel dynamic sys-tems approach to psychopathology and resilience theincreased attention paid to genendashenvironment interplay inthe development of psychopathology and resilience andthe application of a multiple levels of analysis develop-mental perspective to mental illnesses that have tradi-tionally been examined nondevelopmentally (eg bipolardisorder schizophrenia and the personality disorders)not only have contributed to a deeper understandingof the dysfunctions but also have educated the publicabout the causes and consequences of mental disorder(see Cicchetti amp Cannon 1999 Cicchetti amp Crick 2009a2009b Miklowitz amp Cicchetti 2006 2010 Tackett ampSharp 2014)

Advances in genomics GxE interactions and epigenet-ics growth in our understanding of neurobiology neuralplasticity and resilience and progress in the developmentof methodological and technological tools including brainimaging neural circuitry hormone assays immunologysocial and environmental influences on brain developmentand statistical analysis of developmental change pavethe way for interdisciplinary and for multiple levels ofanalysis research programs that will significantly increasethe knowledge base of the development and course ofmaladaptation psychopathology and resilience More-over randomized control prevention and interventiontrials are being conducted based on theoretical modelsand efforts to elucidate the mechanisms and processes con-tributing to developmental change at both the biologicaland psychological levels (Belsky amp van IJzendoorn 2015Cicchetti amp Gunnar 2008)

xi

xii Preface to Developmental Psychopathology Third Edition

Despite the significant advances that have occurred inthe field of developmental psychopathology much impor-tant work lies ahead Undoubtedly these future develop-ments will build on the venerable contributions of the pasthowever as work in the field becomes increasingly interdis-ciplinary multilevel and technologically sophisticated it isessential that even more emphasis be directed toward theprocess of development (Harter 2006 Sroufe 2007 2013)It is not only genes and environments but also the cumula-tive developmental history of the individual that influenceshow future development will unfold (Sroufe 2007 2013)

Developmental psychopathologists have incorporatedconcepts and methods derived from other disciplinaryendeavors that are too often isolated from each otherthereby generating advances in knowledge that might havebeen missed in the absence of cross-disciplinary dialogueThe continuation and elaboration of the mutually enrich-ing interchanges that have occurred within and acrossdisciplines interested in normal and abnormal develop-ment not only will enhance the science of developmentalpsychopathology but also will increase the benefits to bederived for individuals with high-risk conditions or mentaldisorders families and society as a whole

Dante Cicchetti PhDMinneapolis MN

January 2015

REFERENCES

Belsky J amp van IJzendoorn M (2015) What works for whom Geneticmoderation of intervention efficacy [Special Section] Developmentand Psychopathology 27 1ndash6

Cicchetti D (1984) The emergence of developmental psychopathologyChild Development 55(1) 1ndash7

Cicchetti D (1990) A historical perspective on the discipline of devel-opmental psychopathology In J Rolf A Masten D Cicchetti KNuechterlein amp S Weintraub (Eds) Risk and protective factorsin the development of psychopathology (pp 2ndash28) New York NYCambridge University Press

Cicchetti D (1993) Developmental psychopathology Reactions reflec-tions projections Developmental Review 13 471ndash502

Cicchetti D amp Cannon T (1999) Neurodevelopmental processes in theontogenesis and epigenesis of psychopathologyDevelopment and Psy-chopathology 11 375ndash393

Cicchetti D amp Cohen D (Eds) (1995)Developmental psychopathology(Vols 1ndash2) New York NY Wiley

Cicchetti D amp Cohen D (Eds) (2006)Developmental psychopathology(2nd ed Vols 1ndash3) New York NY Wiley

Cicchetti D amp Crick N R (Eds) (2009a) Precursors of anddiverse pathways to personality disorder in children and adoles-cents [Special Issue Part 1]Development and Psychopathology 21(3)683ndash1030

Cicchetti D amp Crick N R (Eds) (2009b) Precursors of and diversepathways to personality disorder in children and adolescents [SpecialIssue Part 2] Development and Psychopathology 21(4) 1031ndash1381

Cicchetti D amp Gunnar M R (2008) Integrating biological processesinto the design and evaluation of preventive interventions Develop-ment and Psychopathology 20 737ndash743

Cicchetti D amp Gunnar M R (Eds) (2009) Meeting the challenge oftranslational research in child psychology Minnesota symposia onchild psychology (Vol 35) New York NY Wiley

Cicchetti D amp Sroufe L A (2000) The past as prologue to the futureThe times theyrsquove been a changinrsquoDevelopment and Psychopathology12 255ndash264

Cicchetti D amp Toth S L (1991) The making of a developmental psy-chopathologist In J Cantor C Spiker amp L Lipsitt (Eds) Childbehavior and development Training for diversity (pp 34ndash72)NorwoodNJ Ablex

Cicchetti D amp Toth S L (Eds) (2006) Translational research in devel-opmental psychopathology [Special Issue] Development and Psy-chopathology 18(3) 619ndash933

Cicchetti D amp Toth S L (2009) The past achievements and futurepromises of developmental psychopathology The coming of age ofa discipline Journal of Child Psychology and Psychiatry 50 16ndash25

Harter S (2006) Self-processes and developmental psychopathology InD Cicchetti amp D Cohen (Eds) Developmental psychopathology (2nded 370ndash418) New York NY Wiley

Masten A S (2014) Ordinary magic Resilience in development NewYork NY Guilford Publications Inc

Miklowitz D J amp Cicchetti D (2006) Toward a life span developmen-tal psychopathology perspective on bipolar disorderDevelopment andPsychopathology 18 935ndash938

Miklowitz D J amp Cicchetti D (Eds) (2010) Bipolar disorder A devel-opmental psychopathology approach New York NY Guilford

Rutter M (1986) Child psychiatry The interface between clinical anddevelopmental research Psychological Medicine 16 151ndash169

Rutter M (1987) Psychosocial resilience and protective mechanismsAmerican Journal of Orthopsychiatry 57 316ndash331

Rutter M (2012) Resilience as a dynamic conceptDevelopment and Psy-chopathology 24 335ndash344

RutterM ampGarmezyN (1983)Developmental psychopathology In EM Hetherington (Ed) Handbook of child psychology (pp 774ndash911)New York NY Wiley

Rutter M amp Sroufe L A (2000) Developmental psychopathologyConcepts and challenges Development and Psychopathology 12265ndash296

Sroufe L A (1990) Considering normal and abnormal together Theessence of developmental psychopathology Development and Psy-chopathology 2 335ndash347

Sroufe L A (2007) The place of development in developmental psy-chopathology In A Masten (Ed)Multilevel dynamics in developmen-tal psychopathology pathways to the future The Minnesota symposiaon child psychology (pp 285ndash299) Mahwah NJ Erlbaum

Sroufe L A (2013) The promise of developmental psychopathologyDevelopment and Psychopathology 25 1215ndash1224

Sroufe L A amp Rutter M (1984) The domain of developmental psy-chopathology Child Development 55 17ndash29

Tackett J L amp Sharp C (2014) A developmental psychopathology per-spective on personality disorder [Special Issue] Journal of PersonalityDisorders 28 1ndash179

Weiss P (1969) Principles of development New York NY Hafner

Contributors

Steve Balsis PhDTexas AampMUniversityCollege Station Texas

Raphael Bernier PhDUniversity of WashingtonSeattle Washington

Joy L Brasfield MAEmory UniversityAtlanta Georgia

J Douglas Bremner MDEmory UniversityAtlanta Georgia

Katrina C Bridgman Goines MAEmory UniversityAtlanta Georgia

Eddie Brummelman MAUtrecht UniversityUtrecht Netherlands

Sara J Bufferd PhDCalifornia State University SanMarcosSanMarcos California

Jacob A Burack PhDMcGill UniversityMontreal CanadaandHocircpital Riviegravere-des-PrairiesMontreal Canada

Susan D Calkins PhDUniversity of North CarolinaGreensboro North Carolina

Rochelle Caplan MDUniversity of CaliforniaLos Angeles California

Laurie Chassin PhDArizona State UniversityTempe Arizona

Ann T Chu PhDA Better Way IncSan Francisco California

Dante Cicchetti PhDInstitute of Child DevelopmentUniversity of MinnesotaMinneapolis Minnesota

Craig R Colder PhDUniversity at BuffaloState University of New YorkBuffalo New York

Bryna Cooper BAUniversity of OregonEugene Oregon

Luke CooperTexas AampMUniversityCollege Station Texas

Ingrid M Cordon PhDUniversity of California DavisDavis California

Kim Cornish PhDMonash UniversityVictoria Australia

Kathryn R Cullen MDUniversity of MinnesotaMinneapolis Minnesota

Geraldine Dawson PhDDuke UniversityDurham North Carolina

xiii

xiv Contributors

Brianna Delker MSUniversity of OregonEugene Oregon

Richard A Depue PhDCornell UniversityIthaca New York

Thomas J Dishion PhDArizona State UniversityTempe Arizona

Brianna Doherty BS MScUniversity of OxfordOxford England

Margaret W Dyson PhDUniversity of California San DiegoLa Jolla California

Philip A Fisher PhDUniversity of OregonEugene Oregon

Peter Fonagy OBE PhD FMedSci FBAUniversity College LondonLondon United Kingdom

Deborah Goldfarb JDUniversity of California DavisDavis California

Gail S Goodman PhDUniversity of California DavisDavis California

Sandra M Goulding MPHMAEmory UniversityAtlanta Georgia

Cathryn Gordon Green BAMcGill UniversityMontreal Canada

Lauren D Gulley MAUniversity of DenverDenver Colorado

Benjamin L Hankin PhDUniversity of DenverDenver Colorado

Iseli G Hernandez BANorthwestern UniversityChicago Illinois

Kathrin Herzhoff MANorthwestern University

Chicago IllinoisHouston Texas

MaryM Heitzeg PhDUniversity of MichiganAnn Arbor Michigan

Brian M Hicks PhDUniversity of MichiganAnn Arbor Michigan

Andrea Hussong PhDUniversity of North CarolinaChapel Hill North Carolina

Grace Iarocci PhDSimon Fraser UniversityBurnaby Canada

Annette Karmiloff-Smith CBE FBAFMedSci MAE CPscyhol

Birkbeck University of LondonLondon United Kingdom

Kevin P Kennedy BAUniversity of CaliforniaBerkeley California

Bonnie Klimes-Dougan PhDUniversity of MinnesotaMinneapolis Minnesota

Oriane Landry PhDLaTrobe UniversityBendigo Australia

Jennifer E Lansford PhDDuke UniversityDurham North Carolina

Mark F Lenzenweger PhDState University of New YorkBinghamton New YorkandWeill Cornell Medical CollegeNew York New York

Leslie D Leve PhDUniversity of OregonEugene Oregon

Alicia F Lieberman PhDUniversity of California San FranciscoSan Francisco California

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 6: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

viii Contents

9 TRAUMATIC STRESS FROM AMULTILEVEL DEVELOPMENTAL PSYCHOPATHOLOGYPERSPECTIVE 386J Douglas Bremner

10 CHILDHOOD EXPOSURE TO INTERPERSONAL TRAUMA 425Alicia F Lieberman and Ann T Chu

11 CHILDMALTREATMENT AND DEVELOPMENTAL PSYCHOPATHOLOGY A MULTILEVELPERSPECTIVE 457Dante Cicchetti and Sheree L Toth

12 A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVE ON FOSTER CARERESEARCH 513Philip A Fisher Leslie D Leve Brianna Delker Leslie E Roos and Bryna Cooper

13 MEMORY DEVELOPMENT EMOTION REGULATION AND TRAUMA-RELATEDPSYCHOPATHOLOGY 555Gail S Goodman Deborah Goldfarb Jodi A Quas Rachel K Narr Helen Milojevich and Ingrid M Cordon

14 ATTENTION AND IMPULSIVITY 591Joel T Nigg

15 THE DEVELOPMENT AND ECOLOGY OF ANTISOCIAL BEHAVIOR LINKING ETIOLOGYPREVENTION AND TREATMENT 647Thomas J Dishion and Gerald R Patterson

16 NARCISSISM 679Sander Thomaes and Eddie Brummelman

17 A MULTILEVEL PERSPECTIVE ON THE DEVELOPMENT OF BORDERLINEPERSONALITY DISORDER 726Peter Fonagy and Patrick Luyten

18 ALCOHOL USE AND THE ALCOHOL USE DISORDERS OVER THE LIFE COURSEA CROSS-LEVEL DEVELOPMENTAL REVIEW 793Robert A Zucker Brian M Hicks and Mary M Heitzeg

19 SUBSTANCE USE AND SUBSTANCE USE DISORDERS 833Laurie Chassin Craig R Colder Andrea Hussong and Kenneth J Sher

20 BIPOLAR DISORDER FROM A DEVELOPMENTAL PSYCHOPATHOLOGY PERSPECTIVEFOCUSING ON PHENOMENOLOGY ETIOLOGY AND NEUROBIOLOGY 898Bonnie Klimes-Dougan Kevin P Kennedy and Kathryn R Cullen

21 CHILDHOOD SCHIZOPHRENIA 950Rochelle Caplan

Contents ix

22 MULTILEVEL APPROACHES TO SCHIZOPHRENIA AND OTHER PSYCHOTICDISORDERS THE BIOBEHAVIORAL INTERFACE 997Elaine F Walker Arthur T Ryan Katrina C Bridgman Goines Derek M Novacek Sandra M GouldingJoy L Brasfield Allison Macdonald and Hanan D Trotman

23 TOWARD A UNIFYING PERSPECTIVE ON PERSONALITY PATHOLOGY ACROSSTHE LIFE SPAN 1039Jennifer L Tackett Kathrin Herzhoff Steve Balsis and Luke Cooper

24 TOWARD A DEVELOPMENTAL PSYCHOPATHOLOGY OF PERSONALITY DISTURBANCEA NEUROBEHAVIORAL DIMENSIONALMODEL INCORPORATING GENETICENVIRONMENTAL AND EPIGENETIC FACTORS 1079Mark F Lenzenweger and Richard A Depue

Author Index 1111

Subject Index 1189

Preface to Developmental Psychopathology Third Edition

A decade has passed since the second edition of Devel-opmental Psychopathology was published The two prioreditions (Cicchetti amp Cohen 1995 2006) have been veryinfluential in the growth of the field of developmentalpsychopathology The volumes have been highly cited inthe literature and have served as an important resource fordevelopmental scientists and prevention and interventionresearchers alike In the present third edition we haveexpanded from the three volumes contained in the secondedition to four volumes The increased number of volumesin this current edition reflects the continued knowledgegains that have occurred in the field over the past decade

A not insignificant contributor to this growth can befound in the very principles of the discipline (Cicchetti1984 1990 1993 Cicchetti amp Sroufe 2000 Cicchetti ampToth 1991 2009 Rutter amp Sroufe 2000 Sroufe amp Rutter1984) Theorists researchers and prevention scientists inthe field of developmental psychopathology adhere to alife span framework to elucidate the numerous processesand mechanisms that can contribute to the developmentof mental disorders in high-risk individuals as well asthose operative in individuals who already have manifestedpsychological disturbances or who have averted such disor-ders despite their high-risk status (Cicchetti 1993 Masten2014 Rutter 1986 1987 2012) Not only is knowledge ofnormal genetic neurobiological physiological hormonalpsychological and social processes very helpful for under-standing preventing and treating psychopathology butalso deviations from and distortions of normal develop-ment that are seen in pathological processes indicate ininnovative ways how normal development may be bet-ter investigated and understood Similarly informationobtained from investigations of experiments of naturehigh-risk conditions and psychopathology can augmentthe comprehension of normal development (Cicchetti1984 1990 1993 Rutter 1986 Rutter amp Garmezy 1983Sroufe 1990 Weiss 1969)

Another factor that has expedited growth within thefield of developmental psychopathology has been its abilityto incorporate knowledge from diverse disciplines and to

encourage interdisciplinary and translational research(Cicchetti amp Gunnar 2009 Cicchetti amp Toth 2006) Inkeeping with its integrative focus contributions to develop-mental psychopathology have come from many disciplinesof the biological and social sciences A wide array ofcontent areas scientific disciplines and methodologies hasbeen germane Risk and protective factors and processeshave been identified and validated at multiple levels ofanalysis and in multiple domains

The increased emphasis on a multilevel dynamic sys-tems approach to psychopathology and resilience theincreased attention paid to genendashenvironment interplay inthe development of psychopathology and resilience andthe application of a multiple levels of analysis develop-mental perspective to mental illnesses that have tradi-tionally been examined nondevelopmentally (eg bipolardisorder schizophrenia and the personality disorders)not only have contributed to a deeper understandingof the dysfunctions but also have educated the publicabout the causes and consequences of mental disorder(see Cicchetti amp Cannon 1999 Cicchetti amp Crick 2009a2009b Miklowitz amp Cicchetti 2006 2010 Tackett ampSharp 2014)

Advances in genomics GxE interactions and epigenet-ics growth in our understanding of neurobiology neuralplasticity and resilience and progress in the developmentof methodological and technological tools including brainimaging neural circuitry hormone assays immunologysocial and environmental influences on brain developmentand statistical analysis of developmental change pavethe way for interdisciplinary and for multiple levels ofanalysis research programs that will significantly increasethe knowledge base of the development and course ofmaladaptation psychopathology and resilience More-over randomized control prevention and interventiontrials are being conducted based on theoretical modelsand efforts to elucidate the mechanisms and processes con-tributing to developmental change at both the biologicaland psychological levels (Belsky amp van IJzendoorn 2015Cicchetti amp Gunnar 2008)

xi

xii Preface to Developmental Psychopathology Third Edition

Despite the significant advances that have occurred inthe field of developmental psychopathology much impor-tant work lies ahead Undoubtedly these future develop-ments will build on the venerable contributions of the pasthowever as work in the field becomes increasingly interdis-ciplinary multilevel and technologically sophisticated it isessential that even more emphasis be directed toward theprocess of development (Harter 2006 Sroufe 2007 2013)It is not only genes and environments but also the cumula-tive developmental history of the individual that influenceshow future development will unfold (Sroufe 2007 2013)

Developmental psychopathologists have incorporatedconcepts and methods derived from other disciplinaryendeavors that are too often isolated from each otherthereby generating advances in knowledge that might havebeen missed in the absence of cross-disciplinary dialogueThe continuation and elaboration of the mutually enrich-ing interchanges that have occurred within and acrossdisciplines interested in normal and abnormal develop-ment not only will enhance the science of developmentalpsychopathology but also will increase the benefits to bederived for individuals with high-risk conditions or mentaldisorders families and society as a whole

Dante Cicchetti PhDMinneapolis MN

January 2015

REFERENCES

Belsky J amp van IJzendoorn M (2015) What works for whom Geneticmoderation of intervention efficacy [Special Section] Developmentand Psychopathology 27 1ndash6

Cicchetti D (1984) The emergence of developmental psychopathologyChild Development 55(1) 1ndash7

Cicchetti D (1990) A historical perspective on the discipline of devel-opmental psychopathology In J Rolf A Masten D Cicchetti KNuechterlein amp S Weintraub (Eds) Risk and protective factorsin the development of psychopathology (pp 2ndash28) New York NYCambridge University Press

Cicchetti D (1993) Developmental psychopathology Reactions reflec-tions projections Developmental Review 13 471ndash502

Cicchetti D amp Cannon T (1999) Neurodevelopmental processes in theontogenesis and epigenesis of psychopathologyDevelopment and Psy-chopathology 11 375ndash393

Cicchetti D amp Cohen D (Eds) (1995)Developmental psychopathology(Vols 1ndash2) New York NY Wiley

Cicchetti D amp Cohen D (Eds) (2006)Developmental psychopathology(2nd ed Vols 1ndash3) New York NY Wiley

Cicchetti D amp Crick N R (Eds) (2009a) Precursors of anddiverse pathways to personality disorder in children and adoles-cents [Special Issue Part 1]Development and Psychopathology 21(3)683ndash1030

Cicchetti D amp Crick N R (Eds) (2009b) Precursors of and diversepathways to personality disorder in children and adolescents [SpecialIssue Part 2] Development and Psychopathology 21(4) 1031ndash1381

Cicchetti D amp Gunnar M R (2008) Integrating biological processesinto the design and evaluation of preventive interventions Develop-ment and Psychopathology 20 737ndash743

Cicchetti D amp Gunnar M R (Eds) (2009) Meeting the challenge oftranslational research in child psychology Minnesota symposia onchild psychology (Vol 35) New York NY Wiley

Cicchetti D amp Sroufe L A (2000) The past as prologue to the futureThe times theyrsquove been a changinrsquoDevelopment and Psychopathology12 255ndash264

Cicchetti D amp Toth S L (1991) The making of a developmental psy-chopathologist In J Cantor C Spiker amp L Lipsitt (Eds) Childbehavior and development Training for diversity (pp 34ndash72)NorwoodNJ Ablex

Cicchetti D amp Toth S L (Eds) (2006) Translational research in devel-opmental psychopathology [Special Issue] Development and Psy-chopathology 18(3) 619ndash933

Cicchetti D amp Toth S L (2009) The past achievements and futurepromises of developmental psychopathology The coming of age ofa discipline Journal of Child Psychology and Psychiatry 50 16ndash25

Harter S (2006) Self-processes and developmental psychopathology InD Cicchetti amp D Cohen (Eds) Developmental psychopathology (2nded 370ndash418) New York NY Wiley

Masten A S (2014) Ordinary magic Resilience in development NewYork NY Guilford Publications Inc

Miklowitz D J amp Cicchetti D (2006) Toward a life span developmen-tal psychopathology perspective on bipolar disorderDevelopment andPsychopathology 18 935ndash938

Miklowitz D J amp Cicchetti D (Eds) (2010) Bipolar disorder A devel-opmental psychopathology approach New York NY Guilford

Rutter M (1986) Child psychiatry The interface between clinical anddevelopmental research Psychological Medicine 16 151ndash169

Rutter M (1987) Psychosocial resilience and protective mechanismsAmerican Journal of Orthopsychiatry 57 316ndash331

Rutter M (2012) Resilience as a dynamic conceptDevelopment and Psy-chopathology 24 335ndash344

RutterM ampGarmezyN (1983)Developmental psychopathology In EM Hetherington (Ed) Handbook of child psychology (pp 774ndash911)New York NY Wiley

Rutter M amp Sroufe L A (2000) Developmental psychopathologyConcepts and challenges Development and Psychopathology 12265ndash296

Sroufe L A (1990) Considering normal and abnormal together Theessence of developmental psychopathology Development and Psy-chopathology 2 335ndash347

Sroufe L A (2007) The place of development in developmental psy-chopathology In A Masten (Ed)Multilevel dynamics in developmen-tal psychopathology pathways to the future The Minnesota symposiaon child psychology (pp 285ndash299) Mahwah NJ Erlbaum

Sroufe L A (2013) The promise of developmental psychopathologyDevelopment and Psychopathology 25 1215ndash1224

Sroufe L A amp Rutter M (1984) The domain of developmental psy-chopathology Child Development 55 17ndash29

Tackett J L amp Sharp C (2014) A developmental psychopathology per-spective on personality disorder [Special Issue] Journal of PersonalityDisorders 28 1ndash179

Weiss P (1969) Principles of development New York NY Hafner

Contributors

Steve Balsis PhDTexas AampMUniversityCollege Station Texas

Raphael Bernier PhDUniversity of WashingtonSeattle Washington

Joy L Brasfield MAEmory UniversityAtlanta Georgia

J Douglas Bremner MDEmory UniversityAtlanta Georgia

Katrina C Bridgman Goines MAEmory UniversityAtlanta Georgia

Eddie Brummelman MAUtrecht UniversityUtrecht Netherlands

Sara J Bufferd PhDCalifornia State University SanMarcosSanMarcos California

Jacob A Burack PhDMcGill UniversityMontreal CanadaandHocircpital Riviegravere-des-PrairiesMontreal Canada

Susan D Calkins PhDUniversity of North CarolinaGreensboro North Carolina

Rochelle Caplan MDUniversity of CaliforniaLos Angeles California

Laurie Chassin PhDArizona State UniversityTempe Arizona

Ann T Chu PhDA Better Way IncSan Francisco California

Dante Cicchetti PhDInstitute of Child DevelopmentUniversity of MinnesotaMinneapolis Minnesota

Craig R Colder PhDUniversity at BuffaloState University of New YorkBuffalo New York

Bryna Cooper BAUniversity of OregonEugene Oregon

Luke CooperTexas AampMUniversityCollege Station Texas

Ingrid M Cordon PhDUniversity of California DavisDavis California

Kim Cornish PhDMonash UniversityVictoria Australia

Kathryn R Cullen MDUniversity of MinnesotaMinneapolis Minnesota

Geraldine Dawson PhDDuke UniversityDurham North Carolina

xiii

xiv Contributors

Brianna Delker MSUniversity of OregonEugene Oregon

Richard A Depue PhDCornell UniversityIthaca New York

Thomas J Dishion PhDArizona State UniversityTempe Arizona

Brianna Doherty BS MScUniversity of OxfordOxford England

Margaret W Dyson PhDUniversity of California San DiegoLa Jolla California

Philip A Fisher PhDUniversity of OregonEugene Oregon

Peter Fonagy OBE PhD FMedSci FBAUniversity College LondonLondon United Kingdom

Deborah Goldfarb JDUniversity of California DavisDavis California

Gail S Goodman PhDUniversity of California DavisDavis California

Sandra M Goulding MPHMAEmory UniversityAtlanta Georgia

Cathryn Gordon Green BAMcGill UniversityMontreal Canada

Lauren D Gulley MAUniversity of DenverDenver Colorado

Benjamin L Hankin PhDUniversity of DenverDenver Colorado

Iseli G Hernandez BANorthwestern UniversityChicago Illinois

Kathrin Herzhoff MANorthwestern University

Chicago IllinoisHouston Texas

MaryM Heitzeg PhDUniversity of MichiganAnn Arbor Michigan

Brian M Hicks PhDUniversity of MichiganAnn Arbor Michigan

Andrea Hussong PhDUniversity of North CarolinaChapel Hill North Carolina

Grace Iarocci PhDSimon Fraser UniversityBurnaby Canada

Annette Karmiloff-Smith CBE FBAFMedSci MAE CPscyhol

Birkbeck University of LondonLondon United Kingdom

Kevin P Kennedy BAUniversity of CaliforniaBerkeley California

Bonnie Klimes-Dougan PhDUniversity of MinnesotaMinneapolis Minnesota

Oriane Landry PhDLaTrobe UniversityBendigo Australia

Jennifer E Lansford PhDDuke UniversityDurham North Carolina

Mark F Lenzenweger PhDState University of New YorkBinghamton New YorkandWeill Cornell Medical CollegeNew York New York

Leslie D Leve PhDUniversity of OregonEugene Oregon

Alicia F Lieberman PhDUniversity of California San FranciscoSan Francisco California

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 7: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

Contents ix

22 MULTILEVEL APPROACHES TO SCHIZOPHRENIA AND OTHER PSYCHOTICDISORDERS THE BIOBEHAVIORAL INTERFACE 997Elaine F Walker Arthur T Ryan Katrina C Bridgman Goines Derek M Novacek Sandra M GouldingJoy L Brasfield Allison Macdonald and Hanan D Trotman

23 TOWARD A UNIFYING PERSPECTIVE ON PERSONALITY PATHOLOGY ACROSSTHE LIFE SPAN 1039Jennifer L Tackett Kathrin Herzhoff Steve Balsis and Luke Cooper

24 TOWARD A DEVELOPMENTAL PSYCHOPATHOLOGY OF PERSONALITY DISTURBANCEA NEUROBEHAVIORAL DIMENSIONALMODEL INCORPORATING GENETICENVIRONMENTAL AND EPIGENETIC FACTORS 1079Mark F Lenzenweger and Richard A Depue

Author Index 1111

Subject Index 1189

Preface to Developmental Psychopathology Third Edition

A decade has passed since the second edition of Devel-opmental Psychopathology was published The two prioreditions (Cicchetti amp Cohen 1995 2006) have been veryinfluential in the growth of the field of developmentalpsychopathology The volumes have been highly cited inthe literature and have served as an important resource fordevelopmental scientists and prevention and interventionresearchers alike In the present third edition we haveexpanded from the three volumes contained in the secondedition to four volumes The increased number of volumesin this current edition reflects the continued knowledgegains that have occurred in the field over the past decade

A not insignificant contributor to this growth can befound in the very principles of the discipline (Cicchetti1984 1990 1993 Cicchetti amp Sroufe 2000 Cicchetti ampToth 1991 2009 Rutter amp Sroufe 2000 Sroufe amp Rutter1984) Theorists researchers and prevention scientists inthe field of developmental psychopathology adhere to alife span framework to elucidate the numerous processesand mechanisms that can contribute to the developmentof mental disorders in high-risk individuals as well asthose operative in individuals who already have manifestedpsychological disturbances or who have averted such disor-ders despite their high-risk status (Cicchetti 1993 Masten2014 Rutter 1986 1987 2012) Not only is knowledge ofnormal genetic neurobiological physiological hormonalpsychological and social processes very helpful for under-standing preventing and treating psychopathology butalso deviations from and distortions of normal develop-ment that are seen in pathological processes indicate ininnovative ways how normal development may be bet-ter investigated and understood Similarly informationobtained from investigations of experiments of naturehigh-risk conditions and psychopathology can augmentthe comprehension of normal development (Cicchetti1984 1990 1993 Rutter 1986 Rutter amp Garmezy 1983Sroufe 1990 Weiss 1969)

Another factor that has expedited growth within thefield of developmental psychopathology has been its abilityto incorporate knowledge from diverse disciplines and to

encourage interdisciplinary and translational research(Cicchetti amp Gunnar 2009 Cicchetti amp Toth 2006) Inkeeping with its integrative focus contributions to develop-mental psychopathology have come from many disciplinesof the biological and social sciences A wide array ofcontent areas scientific disciplines and methodologies hasbeen germane Risk and protective factors and processeshave been identified and validated at multiple levels ofanalysis and in multiple domains

The increased emphasis on a multilevel dynamic sys-tems approach to psychopathology and resilience theincreased attention paid to genendashenvironment interplay inthe development of psychopathology and resilience andthe application of a multiple levels of analysis develop-mental perspective to mental illnesses that have tradi-tionally been examined nondevelopmentally (eg bipolardisorder schizophrenia and the personality disorders)not only have contributed to a deeper understandingof the dysfunctions but also have educated the publicabout the causes and consequences of mental disorder(see Cicchetti amp Cannon 1999 Cicchetti amp Crick 2009a2009b Miklowitz amp Cicchetti 2006 2010 Tackett ampSharp 2014)

Advances in genomics GxE interactions and epigenet-ics growth in our understanding of neurobiology neuralplasticity and resilience and progress in the developmentof methodological and technological tools including brainimaging neural circuitry hormone assays immunologysocial and environmental influences on brain developmentand statistical analysis of developmental change pavethe way for interdisciplinary and for multiple levels ofanalysis research programs that will significantly increasethe knowledge base of the development and course ofmaladaptation psychopathology and resilience More-over randomized control prevention and interventiontrials are being conducted based on theoretical modelsand efforts to elucidate the mechanisms and processes con-tributing to developmental change at both the biologicaland psychological levels (Belsky amp van IJzendoorn 2015Cicchetti amp Gunnar 2008)

xi

xii Preface to Developmental Psychopathology Third Edition

Despite the significant advances that have occurred inthe field of developmental psychopathology much impor-tant work lies ahead Undoubtedly these future develop-ments will build on the venerable contributions of the pasthowever as work in the field becomes increasingly interdis-ciplinary multilevel and technologically sophisticated it isessential that even more emphasis be directed toward theprocess of development (Harter 2006 Sroufe 2007 2013)It is not only genes and environments but also the cumula-tive developmental history of the individual that influenceshow future development will unfold (Sroufe 2007 2013)

Developmental psychopathologists have incorporatedconcepts and methods derived from other disciplinaryendeavors that are too often isolated from each otherthereby generating advances in knowledge that might havebeen missed in the absence of cross-disciplinary dialogueThe continuation and elaboration of the mutually enrich-ing interchanges that have occurred within and acrossdisciplines interested in normal and abnormal develop-ment not only will enhance the science of developmentalpsychopathology but also will increase the benefits to bederived for individuals with high-risk conditions or mentaldisorders families and society as a whole

Dante Cicchetti PhDMinneapolis MN

January 2015

REFERENCES

Belsky J amp van IJzendoorn M (2015) What works for whom Geneticmoderation of intervention efficacy [Special Section] Developmentand Psychopathology 27 1ndash6

Cicchetti D (1984) The emergence of developmental psychopathologyChild Development 55(1) 1ndash7

Cicchetti D (1990) A historical perspective on the discipline of devel-opmental psychopathology In J Rolf A Masten D Cicchetti KNuechterlein amp S Weintraub (Eds) Risk and protective factorsin the development of psychopathology (pp 2ndash28) New York NYCambridge University Press

Cicchetti D (1993) Developmental psychopathology Reactions reflec-tions projections Developmental Review 13 471ndash502

Cicchetti D amp Cannon T (1999) Neurodevelopmental processes in theontogenesis and epigenesis of psychopathologyDevelopment and Psy-chopathology 11 375ndash393

Cicchetti D amp Cohen D (Eds) (1995)Developmental psychopathology(Vols 1ndash2) New York NY Wiley

Cicchetti D amp Cohen D (Eds) (2006)Developmental psychopathology(2nd ed Vols 1ndash3) New York NY Wiley

Cicchetti D amp Crick N R (Eds) (2009a) Precursors of anddiverse pathways to personality disorder in children and adoles-cents [Special Issue Part 1]Development and Psychopathology 21(3)683ndash1030

Cicchetti D amp Crick N R (Eds) (2009b) Precursors of and diversepathways to personality disorder in children and adolescents [SpecialIssue Part 2] Development and Psychopathology 21(4) 1031ndash1381

Cicchetti D amp Gunnar M R (2008) Integrating biological processesinto the design and evaluation of preventive interventions Develop-ment and Psychopathology 20 737ndash743

Cicchetti D amp Gunnar M R (Eds) (2009) Meeting the challenge oftranslational research in child psychology Minnesota symposia onchild psychology (Vol 35) New York NY Wiley

Cicchetti D amp Sroufe L A (2000) The past as prologue to the futureThe times theyrsquove been a changinrsquoDevelopment and Psychopathology12 255ndash264

Cicchetti D amp Toth S L (1991) The making of a developmental psy-chopathologist In J Cantor C Spiker amp L Lipsitt (Eds) Childbehavior and development Training for diversity (pp 34ndash72)NorwoodNJ Ablex

Cicchetti D amp Toth S L (Eds) (2006) Translational research in devel-opmental psychopathology [Special Issue] Development and Psy-chopathology 18(3) 619ndash933

Cicchetti D amp Toth S L (2009) The past achievements and futurepromises of developmental psychopathology The coming of age ofa discipline Journal of Child Psychology and Psychiatry 50 16ndash25

Harter S (2006) Self-processes and developmental psychopathology InD Cicchetti amp D Cohen (Eds) Developmental psychopathology (2nded 370ndash418) New York NY Wiley

Masten A S (2014) Ordinary magic Resilience in development NewYork NY Guilford Publications Inc

Miklowitz D J amp Cicchetti D (2006) Toward a life span developmen-tal psychopathology perspective on bipolar disorderDevelopment andPsychopathology 18 935ndash938

Miklowitz D J amp Cicchetti D (Eds) (2010) Bipolar disorder A devel-opmental psychopathology approach New York NY Guilford

Rutter M (1986) Child psychiatry The interface between clinical anddevelopmental research Psychological Medicine 16 151ndash169

Rutter M (1987) Psychosocial resilience and protective mechanismsAmerican Journal of Orthopsychiatry 57 316ndash331

Rutter M (2012) Resilience as a dynamic conceptDevelopment and Psy-chopathology 24 335ndash344

RutterM ampGarmezyN (1983)Developmental psychopathology In EM Hetherington (Ed) Handbook of child psychology (pp 774ndash911)New York NY Wiley

Rutter M amp Sroufe L A (2000) Developmental psychopathologyConcepts and challenges Development and Psychopathology 12265ndash296

Sroufe L A (1990) Considering normal and abnormal together Theessence of developmental psychopathology Development and Psy-chopathology 2 335ndash347

Sroufe L A (2007) The place of development in developmental psy-chopathology In A Masten (Ed)Multilevel dynamics in developmen-tal psychopathology pathways to the future The Minnesota symposiaon child psychology (pp 285ndash299) Mahwah NJ Erlbaum

Sroufe L A (2013) The promise of developmental psychopathologyDevelopment and Psychopathology 25 1215ndash1224

Sroufe L A amp Rutter M (1984) The domain of developmental psy-chopathology Child Development 55 17ndash29

Tackett J L amp Sharp C (2014) A developmental psychopathology per-spective on personality disorder [Special Issue] Journal of PersonalityDisorders 28 1ndash179

Weiss P (1969) Principles of development New York NY Hafner

Contributors

Steve Balsis PhDTexas AampMUniversityCollege Station Texas

Raphael Bernier PhDUniversity of WashingtonSeattle Washington

Joy L Brasfield MAEmory UniversityAtlanta Georgia

J Douglas Bremner MDEmory UniversityAtlanta Georgia

Katrina C Bridgman Goines MAEmory UniversityAtlanta Georgia

Eddie Brummelman MAUtrecht UniversityUtrecht Netherlands

Sara J Bufferd PhDCalifornia State University SanMarcosSanMarcos California

Jacob A Burack PhDMcGill UniversityMontreal CanadaandHocircpital Riviegravere-des-PrairiesMontreal Canada

Susan D Calkins PhDUniversity of North CarolinaGreensboro North Carolina

Rochelle Caplan MDUniversity of CaliforniaLos Angeles California

Laurie Chassin PhDArizona State UniversityTempe Arizona

Ann T Chu PhDA Better Way IncSan Francisco California

Dante Cicchetti PhDInstitute of Child DevelopmentUniversity of MinnesotaMinneapolis Minnesota

Craig R Colder PhDUniversity at BuffaloState University of New YorkBuffalo New York

Bryna Cooper BAUniversity of OregonEugene Oregon

Luke CooperTexas AampMUniversityCollege Station Texas

Ingrid M Cordon PhDUniversity of California DavisDavis California

Kim Cornish PhDMonash UniversityVictoria Australia

Kathryn R Cullen MDUniversity of MinnesotaMinneapolis Minnesota

Geraldine Dawson PhDDuke UniversityDurham North Carolina

xiii

xiv Contributors

Brianna Delker MSUniversity of OregonEugene Oregon

Richard A Depue PhDCornell UniversityIthaca New York

Thomas J Dishion PhDArizona State UniversityTempe Arizona

Brianna Doherty BS MScUniversity of OxfordOxford England

Margaret W Dyson PhDUniversity of California San DiegoLa Jolla California

Philip A Fisher PhDUniversity of OregonEugene Oregon

Peter Fonagy OBE PhD FMedSci FBAUniversity College LondonLondon United Kingdom

Deborah Goldfarb JDUniversity of California DavisDavis California

Gail S Goodman PhDUniversity of California DavisDavis California

Sandra M Goulding MPHMAEmory UniversityAtlanta Georgia

Cathryn Gordon Green BAMcGill UniversityMontreal Canada

Lauren D Gulley MAUniversity of DenverDenver Colorado

Benjamin L Hankin PhDUniversity of DenverDenver Colorado

Iseli G Hernandez BANorthwestern UniversityChicago Illinois

Kathrin Herzhoff MANorthwestern University

Chicago IllinoisHouston Texas

MaryM Heitzeg PhDUniversity of MichiganAnn Arbor Michigan

Brian M Hicks PhDUniversity of MichiganAnn Arbor Michigan

Andrea Hussong PhDUniversity of North CarolinaChapel Hill North Carolina

Grace Iarocci PhDSimon Fraser UniversityBurnaby Canada

Annette Karmiloff-Smith CBE FBAFMedSci MAE CPscyhol

Birkbeck University of LondonLondon United Kingdom

Kevin P Kennedy BAUniversity of CaliforniaBerkeley California

Bonnie Klimes-Dougan PhDUniversity of MinnesotaMinneapolis Minnesota

Oriane Landry PhDLaTrobe UniversityBendigo Australia

Jennifer E Lansford PhDDuke UniversityDurham North Carolina

Mark F Lenzenweger PhDState University of New YorkBinghamton New YorkandWeill Cornell Medical CollegeNew York New York

Leslie D Leve PhDUniversity of OregonEugene Oregon

Alicia F Lieberman PhDUniversity of California San FranciscoSan Francisco California

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 8: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

Preface to Developmental Psychopathology Third Edition

A decade has passed since the second edition of Devel-opmental Psychopathology was published The two prioreditions (Cicchetti amp Cohen 1995 2006) have been veryinfluential in the growth of the field of developmentalpsychopathology The volumes have been highly cited inthe literature and have served as an important resource fordevelopmental scientists and prevention and interventionresearchers alike In the present third edition we haveexpanded from the three volumes contained in the secondedition to four volumes The increased number of volumesin this current edition reflects the continued knowledgegains that have occurred in the field over the past decade

A not insignificant contributor to this growth can befound in the very principles of the discipline (Cicchetti1984 1990 1993 Cicchetti amp Sroufe 2000 Cicchetti ampToth 1991 2009 Rutter amp Sroufe 2000 Sroufe amp Rutter1984) Theorists researchers and prevention scientists inthe field of developmental psychopathology adhere to alife span framework to elucidate the numerous processesand mechanisms that can contribute to the developmentof mental disorders in high-risk individuals as well asthose operative in individuals who already have manifestedpsychological disturbances or who have averted such disor-ders despite their high-risk status (Cicchetti 1993 Masten2014 Rutter 1986 1987 2012) Not only is knowledge ofnormal genetic neurobiological physiological hormonalpsychological and social processes very helpful for under-standing preventing and treating psychopathology butalso deviations from and distortions of normal develop-ment that are seen in pathological processes indicate ininnovative ways how normal development may be bet-ter investigated and understood Similarly informationobtained from investigations of experiments of naturehigh-risk conditions and psychopathology can augmentthe comprehension of normal development (Cicchetti1984 1990 1993 Rutter 1986 Rutter amp Garmezy 1983Sroufe 1990 Weiss 1969)

Another factor that has expedited growth within thefield of developmental psychopathology has been its abilityto incorporate knowledge from diverse disciplines and to

encourage interdisciplinary and translational research(Cicchetti amp Gunnar 2009 Cicchetti amp Toth 2006) Inkeeping with its integrative focus contributions to develop-mental psychopathology have come from many disciplinesof the biological and social sciences A wide array ofcontent areas scientific disciplines and methodologies hasbeen germane Risk and protective factors and processeshave been identified and validated at multiple levels ofanalysis and in multiple domains

The increased emphasis on a multilevel dynamic sys-tems approach to psychopathology and resilience theincreased attention paid to genendashenvironment interplay inthe development of psychopathology and resilience andthe application of a multiple levels of analysis develop-mental perspective to mental illnesses that have tradi-tionally been examined nondevelopmentally (eg bipolardisorder schizophrenia and the personality disorders)not only have contributed to a deeper understandingof the dysfunctions but also have educated the publicabout the causes and consequences of mental disorder(see Cicchetti amp Cannon 1999 Cicchetti amp Crick 2009a2009b Miklowitz amp Cicchetti 2006 2010 Tackett ampSharp 2014)

Advances in genomics GxE interactions and epigenet-ics growth in our understanding of neurobiology neuralplasticity and resilience and progress in the developmentof methodological and technological tools including brainimaging neural circuitry hormone assays immunologysocial and environmental influences on brain developmentand statistical analysis of developmental change pavethe way for interdisciplinary and for multiple levels ofanalysis research programs that will significantly increasethe knowledge base of the development and course ofmaladaptation psychopathology and resilience More-over randomized control prevention and interventiontrials are being conducted based on theoretical modelsand efforts to elucidate the mechanisms and processes con-tributing to developmental change at both the biologicaland psychological levels (Belsky amp van IJzendoorn 2015Cicchetti amp Gunnar 2008)

xi

xii Preface to Developmental Psychopathology Third Edition

Despite the significant advances that have occurred inthe field of developmental psychopathology much impor-tant work lies ahead Undoubtedly these future develop-ments will build on the venerable contributions of the pasthowever as work in the field becomes increasingly interdis-ciplinary multilevel and technologically sophisticated it isessential that even more emphasis be directed toward theprocess of development (Harter 2006 Sroufe 2007 2013)It is not only genes and environments but also the cumula-tive developmental history of the individual that influenceshow future development will unfold (Sroufe 2007 2013)

Developmental psychopathologists have incorporatedconcepts and methods derived from other disciplinaryendeavors that are too often isolated from each otherthereby generating advances in knowledge that might havebeen missed in the absence of cross-disciplinary dialogueThe continuation and elaboration of the mutually enrich-ing interchanges that have occurred within and acrossdisciplines interested in normal and abnormal develop-ment not only will enhance the science of developmentalpsychopathology but also will increase the benefits to bederived for individuals with high-risk conditions or mentaldisorders families and society as a whole

Dante Cicchetti PhDMinneapolis MN

January 2015

REFERENCES

Belsky J amp van IJzendoorn M (2015) What works for whom Geneticmoderation of intervention efficacy [Special Section] Developmentand Psychopathology 27 1ndash6

Cicchetti D (1984) The emergence of developmental psychopathologyChild Development 55(1) 1ndash7

Cicchetti D (1990) A historical perspective on the discipline of devel-opmental psychopathology In J Rolf A Masten D Cicchetti KNuechterlein amp S Weintraub (Eds) Risk and protective factorsin the development of psychopathology (pp 2ndash28) New York NYCambridge University Press

Cicchetti D (1993) Developmental psychopathology Reactions reflec-tions projections Developmental Review 13 471ndash502

Cicchetti D amp Cannon T (1999) Neurodevelopmental processes in theontogenesis and epigenesis of psychopathologyDevelopment and Psy-chopathology 11 375ndash393

Cicchetti D amp Cohen D (Eds) (1995)Developmental psychopathology(Vols 1ndash2) New York NY Wiley

Cicchetti D amp Cohen D (Eds) (2006)Developmental psychopathology(2nd ed Vols 1ndash3) New York NY Wiley

Cicchetti D amp Crick N R (Eds) (2009a) Precursors of anddiverse pathways to personality disorder in children and adoles-cents [Special Issue Part 1]Development and Psychopathology 21(3)683ndash1030

Cicchetti D amp Crick N R (Eds) (2009b) Precursors of and diversepathways to personality disorder in children and adolescents [SpecialIssue Part 2] Development and Psychopathology 21(4) 1031ndash1381

Cicchetti D amp Gunnar M R (2008) Integrating biological processesinto the design and evaluation of preventive interventions Develop-ment and Psychopathology 20 737ndash743

Cicchetti D amp Gunnar M R (Eds) (2009) Meeting the challenge oftranslational research in child psychology Minnesota symposia onchild psychology (Vol 35) New York NY Wiley

Cicchetti D amp Sroufe L A (2000) The past as prologue to the futureThe times theyrsquove been a changinrsquoDevelopment and Psychopathology12 255ndash264

Cicchetti D amp Toth S L (1991) The making of a developmental psy-chopathologist In J Cantor C Spiker amp L Lipsitt (Eds) Childbehavior and development Training for diversity (pp 34ndash72)NorwoodNJ Ablex

Cicchetti D amp Toth S L (Eds) (2006) Translational research in devel-opmental psychopathology [Special Issue] Development and Psy-chopathology 18(3) 619ndash933

Cicchetti D amp Toth S L (2009) The past achievements and futurepromises of developmental psychopathology The coming of age ofa discipline Journal of Child Psychology and Psychiatry 50 16ndash25

Harter S (2006) Self-processes and developmental psychopathology InD Cicchetti amp D Cohen (Eds) Developmental psychopathology (2nded 370ndash418) New York NY Wiley

Masten A S (2014) Ordinary magic Resilience in development NewYork NY Guilford Publications Inc

Miklowitz D J amp Cicchetti D (2006) Toward a life span developmen-tal psychopathology perspective on bipolar disorderDevelopment andPsychopathology 18 935ndash938

Miklowitz D J amp Cicchetti D (Eds) (2010) Bipolar disorder A devel-opmental psychopathology approach New York NY Guilford

Rutter M (1986) Child psychiatry The interface between clinical anddevelopmental research Psychological Medicine 16 151ndash169

Rutter M (1987) Psychosocial resilience and protective mechanismsAmerican Journal of Orthopsychiatry 57 316ndash331

Rutter M (2012) Resilience as a dynamic conceptDevelopment and Psy-chopathology 24 335ndash344

RutterM ampGarmezyN (1983)Developmental psychopathology In EM Hetherington (Ed) Handbook of child psychology (pp 774ndash911)New York NY Wiley

Rutter M amp Sroufe L A (2000) Developmental psychopathologyConcepts and challenges Development and Psychopathology 12265ndash296

Sroufe L A (1990) Considering normal and abnormal together Theessence of developmental psychopathology Development and Psy-chopathology 2 335ndash347

Sroufe L A (2007) The place of development in developmental psy-chopathology In A Masten (Ed)Multilevel dynamics in developmen-tal psychopathology pathways to the future The Minnesota symposiaon child psychology (pp 285ndash299) Mahwah NJ Erlbaum

Sroufe L A (2013) The promise of developmental psychopathologyDevelopment and Psychopathology 25 1215ndash1224

Sroufe L A amp Rutter M (1984) The domain of developmental psy-chopathology Child Development 55 17ndash29

Tackett J L amp Sharp C (2014) A developmental psychopathology per-spective on personality disorder [Special Issue] Journal of PersonalityDisorders 28 1ndash179

Weiss P (1969) Principles of development New York NY Hafner

Contributors

Steve Balsis PhDTexas AampMUniversityCollege Station Texas

Raphael Bernier PhDUniversity of WashingtonSeattle Washington

Joy L Brasfield MAEmory UniversityAtlanta Georgia

J Douglas Bremner MDEmory UniversityAtlanta Georgia

Katrina C Bridgman Goines MAEmory UniversityAtlanta Georgia

Eddie Brummelman MAUtrecht UniversityUtrecht Netherlands

Sara J Bufferd PhDCalifornia State University SanMarcosSanMarcos California

Jacob A Burack PhDMcGill UniversityMontreal CanadaandHocircpital Riviegravere-des-PrairiesMontreal Canada

Susan D Calkins PhDUniversity of North CarolinaGreensboro North Carolina

Rochelle Caplan MDUniversity of CaliforniaLos Angeles California

Laurie Chassin PhDArizona State UniversityTempe Arizona

Ann T Chu PhDA Better Way IncSan Francisco California

Dante Cicchetti PhDInstitute of Child DevelopmentUniversity of MinnesotaMinneapolis Minnesota

Craig R Colder PhDUniversity at BuffaloState University of New YorkBuffalo New York

Bryna Cooper BAUniversity of OregonEugene Oregon

Luke CooperTexas AampMUniversityCollege Station Texas

Ingrid M Cordon PhDUniversity of California DavisDavis California

Kim Cornish PhDMonash UniversityVictoria Australia

Kathryn R Cullen MDUniversity of MinnesotaMinneapolis Minnesota

Geraldine Dawson PhDDuke UniversityDurham North Carolina

xiii

xiv Contributors

Brianna Delker MSUniversity of OregonEugene Oregon

Richard A Depue PhDCornell UniversityIthaca New York

Thomas J Dishion PhDArizona State UniversityTempe Arizona

Brianna Doherty BS MScUniversity of OxfordOxford England

Margaret W Dyson PhDUniversity of California San DiegoLa Jolla California

Philip A Fisher PhDUniversity of OregonEugene Oregon

Peter Fonagy OBE PhD FMedSci FBAUniversity College LondonLondon United Kingdom

Deborah Goldfarb JDUniversity of California DavisDavis California

Gail S Goodman PhDUniversity of California DavisDavis California

Sandra M Goulding MPHMAEmory UniversityAtlanta Georgia

Cathryn Gordon Green BAMcGill UniversityMontreal Canada

Lauren D Gulley MAUniversity of DenverDenver Colorado

Benjamin L Hankin PhDUniversity of DenverDenver Colorado

Iseli G Hernandez BANorthwestern UniversityChicago Illinois

Kathrin Herzhoff MANorthwestern University

Chicago IllinoisHouston Texas

MaryM Heitzeg PhDUniversity of MichiganAnn Arbor Michigan

Brian M Hicks PhDUniversity of MichiganAnn Arbor Michigan

Andrea Hussong PhDUniversity of North CarolinaChapel Hill North Carolina

Grace Iarocci PhDSimon Fraser UniversityBurnaby Canada

Annette Karmiloff-Smith CBE FBAFMedSci MAE CPscyhol

Birkbeck University of LondonLondon United Kingdom

Kevin P Kennedy BAUniversity of CaliforniaBerkeley California

Bonnie Klimes-Dougan PhDUniversity of MinnesotaMinneapolis Minnesota

Oriane Landry PhDLaTrobe UniversityBendigo Australia

Jennifer E Lansford PhDDuke UniversityDurham North Carolina

Mark F Lenzenweger PhDState University of New YorkBinghamton New YorkandWeill Cornell Medical CollegeNew York New York

Leslie D Leve PhDUniversity of OregonEugene Oregon

Alicia F Lieberman PhDUniversity of California San FranciscoSan Francisco California

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 9: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

xii Preface to Developmental Psychopathology Third Edition

Despite the significant advances that have occurred inthe field of developmental psychopathology much impor-tant work lies ahead Undoubtedly these future develop-ments will build on the venerable contributions of the pasthowever as work in the field becomes increasingly interdis-ciplinary multilevel and technologically sophisticated it isessential that even more emphasis be directed toward theprocess of development (Harter 2006 Sroufe 2007 2013)It is not only genes and environments but also the cumula-tive developmental history of the individual that influenceshow future development will unfold (Sroufe 2007 2013)

Developmental psychopathologists have incorporatedconcepts and methods derived from other disciplinaryendeavors that are too often isolated from each otherthereby generating advances in knowledge that might havebeen missed in the absence of cross-disciplinary dialogueThe continuation and elaboration of the mutually enrich-ing interchanges that have occurred within and acrossdisciplines interested in normal and abnormal develop-ment not only will enhance the science of developmentalpsychopathology but also will increase the benefits to bederived for individuals with high-risk conditions or mentaldisorders families and society as a whole

Dante Cicchetti PhDMinneapolis MN

January 2015

REFERENCES

Belsky J amp van IJzendoorn M (2015) What works for whom Geneticmoderation of intervention efficacy [Special Section] Developmentand Psychopathology 27 1ndash6

Cicchetti D (1984) The emergence of developmental psychopathologyChild Development 55(1) 1ndash7

Cicchetti D (1990) A historical perspective on the discipline of devel-opmental psychopathology In J Rolf A Masten D Cicchetti KNuechterlein amp S Weintraub (Eds) Risk and protective factorsin the development of psychopathology (pp 2ndash28) New York NYCambridge University Press

Cicchetti D (1993) Developmental psychopathology Reactions reflec-tions projections Developmental Review 13 471ndash502

Cicchetti D amp Cannon T (1999) Neurodevelopmental processes in theontogenesis and epigenesis of psychopathologyDevelopment and Psy-chopathology 11 375ndash393

Cicchetti D amp Cohen D (Eds) (1995)Developmental psychopathology(Vols 1ndash2) New York NY Wiley

Cicchetti D amp Cohen D (Eds) (2006)Developmental psychopathology(2nd ed Vols 1ndash3) New York NY Wiley

Cicchetti D amp Crick N R (Eds) (2009a) Precursors of anddiverse pathways to personality disorder in children and adoles-cents [Special Issue Part 1]Development and Psychopathology 21(3)683ndash1030

Cicchetti D amp Crick N R (Eds) (2009b) Precursors of and diversepathways to personality disorder in children and adolescents [SpecialIssue Part 2] Development and Psychopathology 21(4) 1031ndash1381

Cicchetti D amp Gunnar M R (2008) Integrating biological processesinto the design and evaluation of preventive interventions Develop-ment and Psychopathology 20 737ndash743

Cicchetti D amp Gunnar M R (Eds) (2009) Meeting the challenge oftranslational research in child psychology Minnesota symposia onchild psychology (Vol 35) New York NY Wiley

Cicchetti D amp Sroufe L A (2000) The past as prologue to the futureThe times theyrsquove been a changinrsquoDevelopment and Psychopathology12 255ndash264

Cicchetti D amp Toth S L (1991) The making of a developmental psy-chopathologist In J Cantor C Spiker amp L Lipsitt (Eds) Childbehavior and development Training for diversity (pp 34ndash72)NorwoodNJ Ablex

Cicchetti D amp Toth S L (Eds) (2006) Translational research in devel-opmental psychopathology [Special Issue] Development and Psy-chopathology 18(3) 619ndash933

Cicchetti D amp Toth S L (2009) The past achievements and futurepromises of developmental psychopathology The coming of age ofa discipline Journal of Child Psychology and Psychiatry 50 16ndash25

Harter S (2006) Self-processes and developmental psychopathology InD Cicchetti amp D Cohen (Eds) Developmental psychopathology (2nded 370ndash418) New York NY Wiley

Masten A S (2014) Ordinary magic Resilience in development NewYork NY Guilford Publications Inc

Miklowitz D J amp Cicchetti D (2006) Toward a life span developmen-tal psychopathology perspective on bipolar disorderDevelopment andPsychopathology 18 935ndash938

Miklowitz D J amp Cicchetti D (Eds) (2010) Bipolar disorder A devel-opmental psychopathology approach New York NY Guilford

Rutter M (1986) Child psychiatry The interface between clinical anddevelopmental research Psychological Medicine 16 151ndash169

Rutter M (1987) Psychosocial resilience and protective mechanismsAmerican Journal of Orthopsychiatry 57 316ndash331

Rutter M (2012) Resilience as a dynamic conceptDevelopment and Psy-chopathology 24 335ndash344

RutterM ampGarmezyN (1983)Developmental psychopathology In EM Hetherington (Ed) Handbook of child psychology (pp 774ndash911)New York NY Wiley

Rutter M amp Sroufe L A (2000) Developmental psychopathologyConcepts and challenges Development and Psychopathology 12265ndash296

Sroufe L A (1990) Considering normal and abnormal together Theessence of developmental psychopathology Development and Psy-chopathology 2 335ndash347

Sroufe L A (2007) The place of development in developmental psy-chopathology In A Masten (Ed)Multilevel dynamics in developmen-tal psychopathology pathways to the future The Minnesota symposiaon child psychology (pp 285ndash299) Mahwah NJ Erlbaum

Sroufe L A (2013) The promise of developmental psychopathologyDevelopment and Psychopathology 25 1215ndash1224

Sroufe L A amp Rutter M (1984) The domain of developmental psy-chopathology Child Development 55 17ndash29

Tackett J L amp Sharp C (2014) A developmental psychopathology per-spective on personality disorder [Special Issue] Journal of PersonalityDisorders 28 1ndash179

Weiss P (1969) Principles of development New York NY Hafner

Contributors

Steve Balsis PhDTexas AampMUniversityCollege Station Texas

Raphael Bernier PhDUniversity of WashingtonSeattle Washington

Joy L Brasfield MAEmory UniversityAtlanta Georgia

J Douglas Bremner MDEmory UniversityAtlanta Georgia

Katrina C Bridgman Goines MAEmory UniversityAtlanta Georgia

Eddie Brummelman MAUtrecht UniversityUtrecht Netherlands

Sara J Bufferd PhDCalifornia State University SanMarcosSanMarcos California

Jacob A Burack PhDMcGill UniversityMontreal CanadaandHocircpital Riviegravere-des-PrairiesMontreal Canada

Susan D Calkins PhDUniversity of North CarolinaGreensboro North Carolina

Rochelle Caplan MDUniversity of CaliforniaLos Angeles California

Laurie Chassin PhDArizona State UniversityTempe Arizona

Ann T Chu PhDA Better Way IncSan Francisco California

Dante Cicchetti PhDInstitute of Child DevelopmentUniversity of MinnesotaMinneapolis Minnesota

Craig R Colder PhDUniversity at BuffaloState University of New YorkBuffalo New York

Bryna Cooper BAUniversity of OregonEugene Oregon

Luke CooperTexas AampMUniversityCollege Station Texas

Ingrid M Cordon PhDUniversity of California DavisDavis California

Kim Cornish PhDMonash UniversityVictoria Australia

Kathryn R Cullen MDUniversity of MinnesotaMinneapolis Minnesota

Geraldine Dawson PhDDuke UniversityDurham North Carolina

xiii

xiv Contributors

Brianna Delker MSUniversity of OregonEugene Oregon

Richard A Depue PhDCornell UniversityIthaca New York

Thomas J Dishion PhDArizona State UniversityTempe Arizona

Brianna Doherty BS MScUniversity of OxfordOxford England

Margaret W Dyson PhDUniversity of California San DiegoLa Jolla California

Philip A Fisher PhDUniversity of OregonEugene Oregon

Peter Fonagy OBE PhD FMedSci FBAUniversity College LondonLondon United Kingdom

Deborah Goldfarb JDUniversity of California DavisDavis California

Gail S Goodman PhDUniversity of California DavisDavis California

Sandra M Goulding MPHMAEmory UniversityAtlanta Georgia

Cathryn Gordon Green BAMcGill UniversityMontreal Canada

Lauren D Gulley MAUniversity of DenverDenver Colorado

Benjamin L Hankin PhDUniversity of DenverDenver Colorado

Iseli G Hernandez BANorthwestern UniversityChicago Illinois

Kathrin Herzhoff MANorthwestern University

Chicago IllinoisHouston Texas

MaryM Heitzeg PhDUniversity of MichiganAnn Arbor Michigan

Brian M Hicks PhDUniversity of MichiganAnn Arbor Michigan

Andrea Hussong PhDUniversity of North CarolinaChapel Hill North Carolina

Grace Iarocci PhDSimon Fraser UniversityBurnaby Canada

Annette Karmiloff-Smith CBE FBAFMedSci MAE CPscyhol

Birkbeck University of LondonLondon United Kingdom

Kevin P Kennedy BAUniversity of CaliforniaBerkeley California

Bonnie Klimes-Dougan PhDUniversity of MinnesotaMinneapolis Minnesota

Oriane Landry PhDLaTrobe UniversityBendigo Australia

Jennifer E Lansford PhDDuke UniversityDurham North Carolina

Mark F Lenzenweger PhDState University of New YorkBinghamton New YorkandWeill Cornell Medical CollegeNew York New York

Leslie D Leve PhDUniversity of OregonEugene Oregon

Alicia F Lieberman PhDUniversity of California San FranciscoSan Francisco California

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 10: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

Contributors

Steve Balsis PhDTexas AampMUniversityCollege Station Texas

Raphael Bernier PhDUniversity of WashingtonSeattle Washington

Joy L Brasfield MAEmory UniversityAtlanta Georgia

J Douglas Bremner MDEmory UniversityAtlanta Georgia

Katrina C Bridgman Goines MAEmory UniversityAtlanta Georgia

Eddie Brummelman MAUtrecht UniversityUtrecht Netherlands

Sara J Bufferd PhDCalifornia State University SanMarcosSanMarcos California

Jacob A Burack PhDMcGill UniversityMontreal CanadaandHocircpital Riviegravere-des-PrairiesMontreal Canada

Susan D Calkins PhDUniversity of North CarolinaGreensboro North Carolina

Rochelle Caplan MDUniversity of CaliforniaLos Angeles California

Laurie Chassin PhDArizona State UniversityTempe Arizona

Ann T Chu PhDA Better Way IncSan Francisco California

Dante Cicchetti PhDInstitute of Child DevelopmentUniversity of MinnesotaMinneapolis Minnesota

Craig R Colder PhDUniversity at BuffaloState University of New YorkBuffalo New York

Bryna Cooper BAUniversity of OregonEugene Oregon

Luke CooperTexas AampMUniversityCollege Station Texas

Ingrid M Cordon PhDUniversity of California DavisDavis California

Kim Cornish PhDMonash UniversityVictoria Australia

Kathryn R Cullen MDUniversity of MinnesotaMinneapolis Minnesota

Geraldine Dawson PhDDuke UniversityDurham North Carolina

xiii

xiv Contributors

Brianna Delker MSUniversity of OregonEugene Oregon

Richard A Depue PhDCornell UniversityIthaca New York

Thomas J Dishion PhDArizona State UniversityTempe Arizona

Brianna Doherty BS MScUniversity of OxfordOxford England

Margaret W Dyson PhDUniversity of California San DiegoLa Jolla California

Philip A Fisher PhDUniversity of OregonEugene Oregon

Peter Fonagy OBE PhD FMedSci FBAUniversity College LondonLondon United Kingdom

Deborah Goldfarb JDUniversity of California DavisDavis California

Gail S Goodman PhDUniversity of California DavisDavis California

Sandra M Goulding MPHMAEmory UniversityAtlanta Georgia

Cathryn Gordon Green BAMcGill UniversityMontreal Canada

Lauren D Gulley MAUniversity of DenverDenver Colorado

Benjamin L Hankin PhDUniversity of DenverDenver Colorado

Iseli G Hernandez BANorthwestern UniversityChicago Illinois

Kathrin Herzhoff MANorthwestern University

Chicago IllinoisHouston Texas

MaryM Heitzeg PhDUniversity of MichiganAnn Arbor Michigan

Brian M Hicks PhDUniversity of MichiganAnn Arbor Michigan

Andrea Hussong PhDUniversity of North CarolinaChapel Hill North Carolina

Grace Iarocci PhDSimon Fraser UniversityBurnaby Canada

Annette Karmiloff-Smith CBE FBAFMedSci MAE CPscyhol

Birkbeck University of LondonLondon United Kingdom

Kevin P Kennedy BAUniversity of CaliforniaBerkeley California

Bonnie Klimes-Dougan PhDUniversity of MinnesotaMinneapolis Minnesota

Oriane Landry PhDLaTrobe UniversityBendigo Australia

Jennifer E Lansford PhDDuke UniversityDurham North Carolina

Mark F Lenzenweger PhDState University of New YorkBinghamton New YorkandWeill Cornell Medical CollegeNew York New York

Leslie D Leve PhDUniversity of OregonEugene Oregon

Alicia F Lieberman PhDUniversity of California San FranciscoSan Francisco California

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 11: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

xiv Contributors

Brianna Delker MSUniversity of OregonEugene Oregon

Richard A Depue PhDCornell UniversityIthaca New York

Thomas J Dishion PhDArizona State UniversityTempe Arizona

Brianna Doherty BS MScUniversity of OxfordOxford England

Margaret W Dyson PhDUniversity of California San DiegoLa Jolla California

Philip A Fisher PhDUniversity of OregonEugene Oregon

Peter Fonagy OBE PhD FMedSci FBAUniversity College LondonLondon United Kingdom

Deborah Goldfarb JDUniversity of California DavisDavis California

Gail S Goodman PhDUniversity of California DavisDavis California

Sandra M Goulding MPHMAEmory UniversityAtlanta Georgia

Cathryn Gordon Green BAMcGill UniversityMontreal Canada

Lauren D Gulley MAUniversity of DenverDenver Colorado

Benjamin L Hankin PhDUniversity of DenverDenver Colorado

Iseli G Hernandez BANorthwestern UniversityChicago Illinois

Kathrin Herzhoff MANorthwestern University

Chicago IllinoisHouston Texas

MaryM Heitzeg PhDUniversity of MichiganAnn Arbor Michigan

Brian M Hicks PhDUniversity of MichiganAnn Arbor Michigan

Andrea Hussong PhDUniversity of North CarolinaChapel Hill North Carolina

Grace Iarocci PhDSimon Fraser UniversityBurnaby Canada

Annette Karmiloff-Smith CBE FBAFMedSci MAE CPscyhol

Birkbeck University of LondonLondon United Kingdom

Kevin P Kennedy BAUniversity of CaliforniaBerkeley California

Bonnie Klimes-Dougan PhDUniversity of MinnesotaMinneapolis Minnesota

Oriane Landry PhDLaTrobe UniversityBendigo Australia

Jennifer E Lansford PhDDuke UniversityDurham North Carolina

Mark F Lenzenweger PhDState University of New YorkBinghamton New YorkandWeill Cornell Medical CollegeNew York New York

Leslie D Leve PhDUniversity of OregonEugene Oregon

Alicia F Lieberman PhDUniversity of California San FranciscoSan Francisco California

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 12: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

Contributors xv

Patrick Luyten PhDUniversity of LeuvenLeuven BelgiumandUniversity College LondonLondon United Kingdom

Allison Macdonald MAEmory UniversityAtlanta Georgia

Helen Milojevich MAUniversity of California IrvineIrvine California

Peter Mundy PhDUniversity of California

Davis MIND Institute ampSchool of EducationSacramento California

Rachel K Narr MAUniversity of VirginiaCharlottesville Virginia

Joel T Nigg PhDOregon Health amp Science UniversityPortland Oregon

DerekM Novacek MAEmory UniversityAtlanta Georgia

Tasha Oswald PhDUniversity of California Davis MIND InstituteSacramento California

Gerald R Patterson PhDOregon Social Learning CenterEugene Oregon

Nicole B Perry PhDUniversity of North CarolinaGreensboro North Carolina

Jodi A Quas PhDUniversity of California IrvineIrvine California

Philip C Rodkin PhDUniversity of Illinois Urbana-ChampaignUrbana Illinois

Leslie E Roos MSUniversity of OregonEugene Oregon

Karen D Rudolph PhDUniversity of Illinois Urbana-ChampaignChampaign Illinois

Natalie Russo PhDSyracuse UniversitySyracuse New York

Arthur T Ryan MAEmory UniversityAtlanta Georgia

Gaia Scerif BSc PhDUniversity of OxfordOxford England

Kenneth J Sher PhDUniversity of MissouriColumbia Missouri

Hannah R Snyder PhDUniversity of DenverDenver Colorado

Jennifer L Tackett PhDNorthwestern UniversityChicago Illinois

Sander Thomaes PhDUniversity of SouthamptonSouthampton EnglandandUtrecht UniversityUtrecht Netherlands

Sheree L Toth PhDUniversity of RochesterRochester New York

Hanan D Trotman PhDEmory UniversityAtlanta Georgia

Amy Vaughan Van Hecke PhDMarquette UniversityMilwaukee Wisconsin

Lauren S Wakschlag PhDNorthwestern UniversityChicago Illinois

Elaine F Walker PhDEmory UniversityAtlanta Georgia

Robert A Zucker PhDUniversity of MichiganAnn Arbor Michigan

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 13: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

DEVELOPMENTAL PSYCHOPATHOLOGY

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 14: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

CHAPTER 1

Developments in the Developmental Approachto Intellectual Disability

JACOB A BURACK NATALIE RUSSO CATHRYN GORDON GREEN ORIANE LANDRY and GRACE IAROCCI

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY 1

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS 2

Diagnostic Criteria and Assessment 3THE ORIGINS OF THE DEVELOPMENTAL APPROACHTO THE STUDY OF INTELLECTUAL DISABILITY 7

THE TWO-GROUP APPROACH AND BEYOND 10Ziglerrsquos Emphasis on Familial Intellectual Disability 10Differentiating Among Organic Etiologies Extending Beyondthe Two-Group Approach in the Quest for IncreasedPrecision 13

APPLYING DEVELOPMENTAL PRINCIPLES TO THESTUDY OF PERSONSWITH INTELLECTUALDISABILITY CLASSIC AND EXPANDEDVERSIONS 14

Zigler and the Classic Developmental Approach 14Cicchettirsquos Expansion of the Developmental Approach to PersonsWith Organic Etiologies A Focus on Persons With DownSyndrome 16

THE IMPORTANCE OFMENTAL AGE 19Considering Developmental Level 19THE STUDY OF THE ldquoWHOLE PERSONrdquo

WITH INTELLECTUAL DISABILITY 21Social Competence 23Language Development 29The Impact of a Child With Intellectual Disability on the

Family 33NEUROSCIENCE AND THE DEVELOPMENTAL

APPROACH BENEFITS AND PITFALLS IN THEAPPLICATION OF CUTTING-EDGETECHNOLOGY 35

A Primer on What fMRI and ERP Measure 35Neuroscience and the Developmental Approach A Messy Meeting

of Disciplines 36CONCLUSIONS 54From Genes to Brain to Behavior in Intellectual Disability

Future Directions in Research 54Summary 55REFERENCES 55

DEVELOPMENTS IN THE DEVELOPMENTALAPPROACH TO INTELLECTUAL DISABILITY

The developmental study of intellectual disability is a long-established forerunner of developmental psychopathology

ldquoMake for yourself a teacher acquire for yourself a friend andjudge everyone in a positive light rdquo Ethics of the Fathers (PirkeiAvot 1 6) We dedicate this chapter in honor of Ed Zigler for allhis contributions to the science and welfare of so many childrenincluding those with intellectual disability He is the most inspir-ing teacher loyal friend and positive influence to all who knowhim As with so much of his work his articulation of the devel-opmental approach to intellectual disability helped humanize ourunderstanding of a population that for too long had been under-served and kept at the fringes of society We are especially gratefulto Dante Cicchetti for inviting us to contribute this chapter ona topic about which we are so passionate and about which hewas a visionary His leadership both in the world of science and

with origins that predate the formal emergence of thelatter discipline by decades and yet is still in its earlyand sometimes apparently regressive stages of develop-mental emergence relative to other areas of work It waslargely shaped by scholars such as Heinz Werner EdwardZigler and Dante Cicchetti who were also seminal to theemergence of the scholarly discipline of developmentalpsychopathology and yet it is often conceptualized as aseparate unrelated entity These complex relationships pro-vide a lens through which we can understand the advancesand setbacks in the study of intellectual disability and itsplace in the domain of developmental psychopathology

in making the world a better place for children is an example tous all We thank Jillian Stewart Johanna Querengesser AshleyReynolds Icoquih Badillo-Amberg David McNeil Eric KeskinandMartina Tiberi as well as other members of theMcGill YouthStudy Team for their help in preparing the manuscript

1

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 15: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

2 Developments in the Developmental Approach to Intellectual Disability

(and thereby in this volume) Within this framework wehighlight the thinking and research that led to and continueto maintain the developmental approach to intellectualdisability and consider them with regard to developmentsin the study and understanding of intellectual disabilitysince Hodapp and Burackrsquos (2006) chapter in the lastedition of this handbook (Cicchetti amp Cohen 2006)

As intellectual disability is essentially defined by thedevelopment of cognitive abilities and to a considerablylesser extent social skills that are so delayed and ulti-mately impaired that it only involves a small percentageof persons it is a paradigmatic example of the constructof development at the extreme that is so essential to thefield of developmental psychopathology (Burack 1997Cicchetti amp Pogge-Hesse 1982) In this way intellectualdisability also exemplifies Urie Bronfenbrennerrsquos notion ofan experiment of nature which could never be replicated inan experimental setting but in this case is informative forunderstanding the course of typical cognitive and socialdevelopment Thus consistent with Cicchettirsquos (1984)dictum that ldquoyou can learn more about typical functioningby studying its pathology and more about its pathology bystudying its typical staterdquo (p 4) intellectual disability is awindow into addressing issues and questions about cogni-tive and social development that cannot be fully answeredwhen only considering typically developing persons(Burack 1997 Cicchetti amp Pogge-Hese 1982 HodappBurack amp Zigler 1990) In providing the example ofextreme delay or impairment intellectual disability wouldappear to allow us the opportunity to examine the integrityof the developmental system from the unique perspectiveof especially slowed or delayed development (Cicchetti ampBeegly 1990 Hodapp amp Burack 1990 Hodapp amp Zigler1990) As is often the case in nature this ldquoslow motionrdquoanalysis of cognitive and social development allows fora particularly intense level of scrutiny that cannot beattained with events occurring at their typical speed

The converse of Cicchettirsquos dictum is also particularlyrelevant to the study of intellectual disability as the the-ories and methodologies that have governed the study ofdevelopment among typically developing persons haveduring the past half century transformed the way thatpersons with intellectual disability and their families arestudied understood educated and supported (for relatedcollections see Burack Hodapp Iarocci amp Zigler 2012Burack Hodapp amp Zigler 1998 Cicchetti amp Beeghly1990 Hodapp Burack amp Zigler 1990) These advancesare the focus of this chapter as we highlight the ongoingand evolving conceptual methodological and interpretivecontributions of the so-called developmental approach to

the study of persons with intellectual disability and theways that they have led to a more precise and sophisticatedscience (Burack Dawkins Stewart Flores Iarocci ampRusso 2012 Burack Russo Flores Iarocci amp Zigler2012 Cicchetti amp Ganiban 1990 Hodapp Burack ampZigler 1990)

THE DIAGNOSIS OF INTELLECTUAL DISABILITYAND ITS (LACK OF) MEANINGFULNESS

Although the diagnosis has far-reaching implications forthe development and outcomes of the affected personsintellectual disability cannot be considered at all tangibleVirtually unique among the phenomena addressed inthis volume the designation of intellectual disability isessentially based on a behavioral classification culled fromscores on single measures used to operationalize eachof two constructsmdashin this case primarily the constructof intelligence but often also that of social adaptationTypically people who score in approximately the lowest3 of the population or two or more standard deviationsbelow the mean on standardized tests of intelligence andbehavioral adaptation are considered to be intellectuallydisabled However the utility of this designation is compro-mised in two essential ways One the cutoff score is entirelyarbitrary Two the low IQ or behavioral scores can beattained for different reasons and with different profiles asevidenced by the study of the handful of the most commonof the more than 1000 possible etiologies each of whichseems to differ considerably from the other conditionsand situations associated with intellectual disability (forreviews see Burack 1990 Burack Hodapp amp Zigler1988 1990 Cornish amp Wilding 2010 Dykens Hodapp ampFinucane 2001) These group differences are especiallyapparent in developmental rates and trajectories as wellas the profiles of relative strengths and weaknesses acrossthe myriad of cognitive and social skills that are thoughtto impact intelligence and the many sub- and sub-sub-teststhat make up the various different IQ tests and indexes ofbehavioral adaptation that are used for the diagnosis Evengiven the usual within-group differences that are found inany population the compelling and clearly demarcatedgroup discrepancies on many aspects of functioning high-light the profound and complex developmental effects ofthe genesndashbrainndashbehavior relations associated with eachsyndrome that virtually swamp any generalized develop-mental effects of simply lower levels of intelligence andsocial adaptation (for relevant collections see Burack et al

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 16: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 3

1998 Burack Iarocci et al 2012 Howlin Charman ampGhaziuddin 2011 Tager-Flusberg 1999)

With these pervasive group differences across virtu-ally all aspects of being and functioning the notion ofa population of persons with intellectual disability is amirage Thus the phenomenon precludes a science orstudy of intellectual disability per se but rather wouldappear to necessitate the invocation of multiple sciencesof identifiable populations that differ meaningfully fromeach other with regard to etiology defining features anddevelopmental trajectories In this framework both theconcept and the field of intellectual disability are inherentlydeconstructed from the monolithic framework of a singleproblem and population to more precise albeit with theconsequent of increasingly complex conceptualizationsand research (Burack Russo et al 2012) This demiseof a single science or framework of intellectual disabilitywould seem to come at considerable cost Prior so-calledknowledge about persons with intellectual disability as awhole needs to be forsaken while the alternative of theimposition of multiple fine-grained fields of study basedon clearly differentiated populations inevitably entailsconsiderably more work and would seem to signal theabandonment of any sense or even hope of a comprehen-sive and cohesive field of study Yet when the additionalwork is associated with the imposition of a developmentalapproach that is premised on the notion of a systemicorganized and universal system it provides both moreprecise information and a unifying framework with whichthe various fragments of information can be grouped intoa meaningful area of scholarship (Burack 1997 BurackIarocci et al 2012 Cicchetti amp Ganiban 1990 Cicchettiamp Pogge-Hesse 1982 Karmiloff-Smith 2009 Zigler 19691973 Zigler amp Balla 1982 Zigler amp Hodapp 1986)

Diagnostic Criteria and Assessment

In one sense intellectual disability is relatively easily con-ceptualized Across the decades and even centuries of workwith persons with intellectual disability the basic notionhas been that a certain percentage of persons function atsuch low levels of intelligence and social adaptation thatthey cannot survive or function independently in societyor at least need some intensive external support to do so(eg Luckasson et al 2002 AAIDD 2010 for reviewssee Rosen Clark amp Kivitz 1976 Zigler amp Hodapp 1986)However intellectual disability is also an odd and elu-sive behavioral classification as it involves the groupingof an extremely heterogeneous population according toamorphous concepts arbitrary criteria and prevailing

societal values all of which have changed often duringthe past century (for recent discussions see Bertelli et al2014 Salvador-Carulla et al 2011 Schalock et al 2010Shulman Flores Iarocci amp Burack 2011)

Diagnosis and Classification From a DevelopmentalPerspective

Even as researchers and practitioners of intellectual dis-ability discuss relevant issues including the meaning ofintelligence the role of indexes of social competence inthe classification the measures that should be used fortesting and specific criteria for a diagnosis the pragmaticreality is that the classification of intellectual disability hashistorically been entirely determined by IQ a quantitativemeasure of the development of the elusive construct ofintelligence Despite the many concerns about IQ scoresthey continue to be essential in the demarcation of per-sons with intellectual disability and in other strategies toidentify persons at developmental risk because IQ scoresin childhood are seen as reliable indexes of both a childrsquoscurrent rate of intellectual development and of futurelevels of functioning in relation to onersquos same-aged peers(Shulman et al 2011)

The relative reliability among IQ scores at differentpoints in the lifespan captures the developmental essenceof intelligence testing and scores Although IQ scores aretypically discussed as measures of individualsrsquo intellectualabilities in relation to those of other persons of the sameage they are historically and essentially indicators of therate of development of intellectual abilities that is consid-ered both to be consistent at least through adolescenceand to be associated with relative level of functioning inadulthood The developmental nature of IQ is evident inits formula which involves dividing mental age (MA) thelevel of cognitive development attained by the individ-ual by chronological age (CA) and then multiplying thatnumber by a constant (usually 100) (for discussions seeHodapp Burack amp Zigler 1990 Zigler amp Hodapp 1986Shulman et al 2011) This is fundamentally a measure-ment of rate as in this context CA (the denominator)represents the amount of time taken to attain the levelof abilities indicated by MA (the numerator) As a quickanalogy one might think of a common measurement ofrate in our everyday lives that of speed for which we com-monly use the equation of kilometers (or miles) per hourIn this equation the numerator is the specific distancetravelled as indicated by the number of kilometers andthe denominator is the length of time as indicated by thenumber of hours which has passed during the travels Boththe numerator and denominator grow in relation to each

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 17: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

4 Developments in the Developmental Approach to Intellectual Disability

other although the ratio between them varies considerablyas it serves both as an indicator of the speed of travel andas a point of comparison And by definition of rate fasterspeeds are associated with ratios in favor of the numeratorover the denominator For IQ the numerator MA is thedevelopmental distance traveled by the individual in theirattainment of cognitive abilities and the denominatorCA is the length of time that the individual has lived Inthis case a greater numerator or more distance travelledin relation to a smaller denominator less time passedindicates faster developmental growth Clearly a child whoattains the types of skills common to a 6-year-old in 6years and therefore has an IQ of 100 according to ourdevelopmental formula is developing faster than a childfor whom it takes 8 years and has an IQ of 75 but slowerthan one for whom it took only 5 years and who has an IQof 120

In terms of long-term consequences these rates of devel-opment are highly correlated with IQ scores and relatedlevels of functioning throughout the rest of the lifespanThus slower development and therefore lower IQ scores inchildhood are inevitably associated with lower scores on IQtests and generally lower levels of functioning in adulthoodIQ scores are typically standardized in that they are normedacross a representational sample and thereby reflect a sta-tistically calculated average for a specific level of function-ing at a given age or period in life Within this contextthe primary criterion for the designation of intellectual dis-ability generally involves a cutoff score on a standardizedIQ test that is associated with some statistical designationThis cutoff score is usually 70 which is two standard devi-ations below the mean for the general population for whicha mean of 100 is statistically designated According to thisstatistical designation persons with intellectual disabilityshould represent approximately the bottom 3 of the pop-ulation in terms of IQ scores although the number of per-sons who are actually diagnosed often varies in relation toincome level of country (Carulla et al 2011) age of theindividual (Hodapp amp Zigler 1986) and the use of socialadaptation criteria in addition to the IQ score for the diag-nosis (MacMillan Gresham amp Siperstein 1993 SwitzkyampGreenspan 2006)

The Arbitrary and Amorphous Nature of the Criteriafor the Diagnosis of Intellectual Disability

This variability in the specific number of persons whomeet this criterion might raise some concerns about theapplication of two standard deviations below the meanIQ as the cutoff point for the diagnosis except for thefact that this designation is entirely arbitrary and has no

inherent scientific significance with regard to differentiat-ing functioning level among individuals Rather the mostmeaningful aspect of the score is its statistical convenienceas the commonly used nomenclature of standard devia-tions allows for an easily described percentage of personsAs the standard deviations on common IQ tests represent15 points persons with IQs just above (ie 71 72 73) andbelow (69 68 67) the designated cutoff scores do not differsignificantly either statistically or pragmatically from eachother whereas the differences among individuals withinthe range of either intellectual disability with possible IQsof 0ndash70 or of so-called typical functioning with possibleIQs of 71 and above are often vast and can encompassseveral standard deviations If that is the case why areIQ cutoffs imposed The primary rationale is that somecriterion is needed as a standard for social policy anddecisions about who should receive specialized servicesIn this way the designated score which is based on astatistical model of the real world distribution of IQ scoresand thereby level of functioning offers a rough estimateof the number of persons who should be and are eligiblefor some combination of additional funding resourcesservices and supports from governmental and other ser-vice agencies The delineation of intellectual disabilitythen is not a scientific one but rather one that is largelydependent on societal values and discourse as well as theresources that are made available to support persons withintellectual disability

The extent to which the designation of intellectualdisability is an amorphous and arbitrary concept is evidentin that the specific cutoff and the associated definition hasbeen modified at least nine times over the past 100 yearsin the United States (AAMR 2002 Harris 2005 Zigler ampHodapp 1986) and is once again revised in the newestversions of both the American-based Diagnostic and Sta-tistical Manual of the American Psychiatric Association(DSM-5) (APA 2013) and the International Classifica-tion of Diseases (ICD) (Bertelli et al 2014 InternationalAdvisory Group for the Revision of ICD-10 Mental andBehavioural Disorders 2011 Salvador-Carulla et al2011) These changes in both the diagnostic criteria andthe nomenclature are due to many different ldquorealrdquo fac-tors including new knowledge regarding the causes andtypes of intellectual disability the perceived significance ofsocial competence and adaptive behaviors perspectives oneventual outcomes and well-being of persons with intel-lectual disability attitudes of societies and policy makerstoward individualsrsquo dignity and roles in the communityand pragmatically the resources available for services andintervention Yet they also highlight the arbitrariness of

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 18: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

The Diagnosis of Intellectual Disability and Its (Lack of) Meaningfulness 5

the designation and the influence of factors external to theindividuals with the diagnosis

The most blatant example of the arbitrariness of the cri-teria was evidenced at the beginning of the 1960s With theemerging zeitgeist of the time on the promotion of socialjustice and the desire to improve the lots and lives of thosewho were deemed less fortunate the IQ cutoff score waschanged from 70 two standard deviations below the meanof 100 to 85 one standard deviation below the mean bythe American Association on Mental Retardation (Heber1961) Accordingly the percentage of persons diagnosedwith intellectual disability grew from approximately 2ndash3of the population to 16 In the United States alone witha population of approximately 200 million at the time thatmeant a jump of about 26 million people from around6 million to approximately 32 million who fell withinthe parameters of a diagnosis of intellectual disability(Zigler amp Hodapp 1986) The absurdity that so manypeople could go to sleep one night without a diagnosisand wake up the following morning meeting the primarycriterion of a person with intellectual disability highlightsthe obvious arbitrariness in the designation and constructof intellectual disability that precludes any notion of someintrinsic condition that can be meaningfully quantifiedThese points are even further underscored by the subse-quent reversion a dozen years later to the original IQ cutoff(Grossman 1973) thereby shedding the same approxi-mately 26 million people of their diagnosismdashas if in a fairytale in which they go to sleep one night and are magicallyrelieved of their problem which of course they had notsuffered from prior to the change in diagnostic criteria adecade earlier (Zigler amp Hodapp 1986) These changes inthe diagnostic criteria were certainly well meaning with theinitial change occurring in an era of relative affluence andan emergent emphasis on social change with the intentionof enabling services for those persons who typically did notmeet the criterion of intellectual disability but were stillconsidered to be at risk as their intellectual functioning wasat the low end of the average range This course of eventsprovides insight into the difficulties of conceptualizingintellectual disability and the extent to which it must beconsidered in relation to contemporary societal normsand values

The Latest Incarnation of the Diagnostic Criteriafor Intellectual Disability

In the latest edition of the Diagnostic and Statistical Man-ual of Mental Disorders (DSM-5 APA 2013) the termintellectual disability (also referred to as intellectual devel-opmental disorder [IDD]) intended to reflect deficits in

cognitive capacity beginning in the developmental periodreplaces the term mental retardation which had long beenused in classificatory schemes such as those of the Amer-ican Association on Mental Retardation (AAMR) andthe American Psychiatric Association for the DSM Thisrevised terminology brings the DSM into alignment withthe World Health Organizationrsquos International Classifica-tion of Diseases (ICD) and other professional disciplines(Salvador-Carulla amp Bertelli 2008 Salvador-Carullaet al 2011) Intellectual disability is also now the termof choice for public policy discourse by influential groupsrepresenting people with intellectual disabilities such as theAmerican Association on Intellectual and DevelopmentalDisabilities (AAIDD formerly the AAMR Schalocket al 2011)

In addition to the revisions in the nomenclature thechanges and revisions to the DSM with regard to personswith intellectual disability stem from joint efforts of theAmerican Psychological Association and the NationalInstitutes for Mental Health to expand the scientific basisfor psychiatric diagnosis and classification (httpwwwdsm5orgaboutPagesDSMVOverviewaspx) The revi-sions in the DSM-5 are based on a comprehensive reviewof scientific advances targeted research analyses andclinical expertise For example one of the primary changesin the DSM-5 involves a shift from a categorical to a moredimensional system In the earlier versions of the DSMdisorders were described by category with a specific list ofsymptoms within each domain (eg communication) Inthis categorical system a person either displayed a symp-tom or they didnrsquot and the presence of a certain numberof symptoms was required for a diagnosis The newlypublished DSM-5 involves dimensional assessments thatallow clinicians to rate both the presence and the severityof the symptoms such as very severe severe moderate ormild

As DSM-5 is no longer based on a multiaxial classifi-cation system intellectual disability is no longer listed asan Axis II disorder but rather is classified as a neurode-velopmental disorder of brain development Both DSM-5and the AAIDD use the consensus definition of intelli-gence as a general mental ability that involves reasoningproblem solving planning thinking abstractly compre-hending complex ideas judgment academic learning andlearning from experience However the term ldquointellectualdisabilityrdquo as used by the AAIDD is a functional disorderexplicitly based on the WHO International Classificationof Functioning (ICF) Within this framework the extentof disability is evaluated within particular contexts forwhich the focus is on the supports needed to normalize

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 19: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

6 Developments in the Developmental Approach to Intellectual Disability

an individualrsquos life to the extent possible (SchalockBorthwick-Duffy Bradley et al 2010)

In previous versions of the DSM the extent or sever-ity of intellectual impairment was denoted by the levelsof mild moderate severe and profound Whereas theselevels of severity will likely remain as central to the newICD-11 system specifiers (ie mild moderate severeand profound) are used in DSM-5 instead of subtypes todesignate the extent of adaptive dysfunction in academicsocial and practical domains Within the AAIDD dis-ability model the focus is on assessment of the supportsneeded to accommodate to the specific setting (eg homecommunity)

The DSM criteria of an IQ score below 70 and lowadaptive functioning do not change for the diagnosis ofintellectual disability but the diagnosis involves a greaterreliance on adaptive functioning with greater considera-tion about how intelligence is applied to the functions ofeveryday life (DSM-5) The age of onset is no longer specif-ically defined as before 18 years and is replaced with onsetduring the developmental period However intellectualdisability is distinguished from neurocognitive disorderwhich involves a deterioration of cognitive functioning(eg dementia) with late onset In addition an overalladaptive functioning score of two standard deviationsbelow the mean is no longer necessary as the criteria ismet when at least one domain of functioningmdashconceptualsocial or practicalmdashis sufficiently impaired based on anassessment of adaptive functioning that ongoing supportis needed Under exceptional circumstances when stan-dardized assessments cannot be used as in the case ofpersons with sensory or physical impairments a diagnosisof unspecified intellectual disability may be applied to indi-viduals with significant adaptive functioning impairments(APA 2013)

Even as the revisions to the DSM were welcomed bysome stakeholders they elicited criticisms from others Forexample the AAIDD raised the concern in an open letterto the president of the American Psychiatric Association(http aaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) that the new proposed changesto the criteria for intellectual disability would cause con-fusion suggesting that the new boundaries are not asclear as in the DSM-IV For example the change in thecriteria inDSM from necessitating that the IDD be presentbefore 18 years of age to the proposed revisions that allsymptoms must have an onset during the developmentalperiod leaves the age at which the developmental periodends open to interpretation The AAIDD suggests thatthis will result in the inconsistent use of developmental

periods across jurisdictions It also took issue with the useof the terms adaptive behavior and adaptive functioning aspotentially confusing According to the AAIDD adaptivebehaviors are the conceptual social and practical skillsa person may have whereas adaptive functioning is howwell or independently the person is able to use those skillsto handle common demands in life Thus in an appeal toJohnM Oldham the president of theDSM-5 the AAIDDargued that the DSM-5rsquos substituting of adaptive func-tioning for adaptive behaviors as ldquocommunication socialparticipation functioning at school or at work or personalindependence at home or in community settingsrdquo was notconsistent with the AAIDD position nor with the currentpsychometric literature and was problematic because itdid not adequately capture functioning but rather empha-sized the individualrsquos skills (httpaaiddorgdocsdefault-sourcecommentsaaidd-dsm5-comment-letterpdf) Sim-ilarly the changes in the mutiaxial diagnosis also posed aconcern for clinicians For example Harris (2013) high-lighted the high prevalence of psychiatric disorders inpeople with a diagnosis of intellectual disability and sug-gested that both diagnoses are often warranted Howeverthe elimination of the multiaxial classification and removalof Axis II in DSM-5 may result in clinicians overlookingdiagnoses of mental health disorders such as anxietydisorder or depression among persons with intellectualdisability

The Application of the Diagnostic Criteria

The continual fine-tuning of the diagnostic criteria andsystem represents evolving synergy of professional andsocietal influences on the ever-changing ways that personswith intellectual disability are viewed understood andsupported by those around them As certain problemsare addressed other limitations in the process continueto be identified (Charman Hood amp Howlin 2008) Forexample even into the twenty-first century dispropor-tionate numbers of minority children were still being diag-nosed with mild intellectual disability as intelligence testsoften underestimate the abilities of these children who alsotypically fail to meet the dominant culturersquos expectationsconcerning academic performance (Hays 2001 Valenciaand Suzuki 2001) In addition other non-cognitive fac-tors such as childrsquos health history physical impairmentsmotivation levels and social milieu must be consideredwhen assessing intellectual abilities as they may inhibitperformance on IQ tests or other cognitive tasks especiallyamong children from atypical or non-majority back-grounds These types of concerns regarding the narrowfocus of and potential external influences on intelligence

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 20: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

The Origins of the Developmental Approach to the Study of Intellectual Disability 7

tests and their use as an exclusive vehicle for definingintellectual disability was the motivating reason for theinitial insistence of the American Association of MentalDeficiency (AAMD) (later the AAMR and AAIDD)that low scores on adaptive behavior be included alongwith low IQ scores in its definition of intellectual dis-ability (Borthwick-Duffy 2007) Accordingly traditionalmethods of examining cognitive and adaptive abilitiesare now supplemented with a thorough examination ofthe childrsquos developmental history family history andsocial and cultural environment A broader picture ofthe childrsquos developmental status is obtained with parentand teacher interviews and evaluations of medical andschool records For example information about the childrsquosphysical problems peer interactions social skills and emo-tional state can be productively used in conjunction withmore formal assessment methods despite their somewhatlimited reliability and validity Consequently within theframework of a multifactorial model of assessment theevaluation of intellectual disability is increasingly takingplace within an interdisciplinary social developmentalframework

The emphasis is on providing a diagnosis as early aspossible to identify the childrsquos specific needs to ascertainthe required services and to facilitate communicationacross the team of relevant professionals and amongfamily members However this process is not without itsproblems especially as it can also stigmatize the child if itleads to unwarranted negative projections by professionalsand parents about the childrsquos potential Thus profession-als need to be sensitive to the effects and limitations ofthe label and recognize that intellectual disability onlycaptures specific aspects of the individual As the manifes-tation and outcomes of the key symptoms of intellectualdisability vary across the lifespan (Zigler ampHodapp 1986)a comprehensive assessment program should be used tofollow the individual through many of the key periods ofdevelopment Current social and behavioral models arecharacterized by an emphasis on the need for repeatedassessments to evaluate the childrsquos changing developmen-tal status and needs the impact of medical treatmentsthe appropriateness of educational placements and theeffectiveness of educational programming This type ofapproach to assessment captures the dynamic and chang-ing quality of development as well as its social nature Inaddition to their discrepancies in cognitive functioningpersons with intellectual disability also differ with regardto their physical social and emotional characteristics aswell as in their relations with their families and the broaderenvironment

THE ORIGINS OF THE DEVELOPMENTALAPPROACH TO THE STUDY OF INTELLECTUALDISABILITY

As with virtually any aspect of scholarship the devel-opmental approach to intellectual disability has neithera clearly identifiable start date nor even a universallyaccepted origin Thus in a somewhat but certainly notentirely arbitrary fashion we choose an auspicious eventthat both provided a conceptual link to the essential schol-arly antecedents to the field and generated a foundationaland vital body of research that transformed the researchon persons with intellectual disability by grounding it indevelopmental theory and methodology The event wasEdward Ziglerrsquos 1967 publication of a conceptual pieceldquoFamilial Mental Retardation A Continuing Dilemmardquowhich appeared in the prestigious general scientific journalScience at a time when the study of intellectual disability(or mental retardation as it was called at the time) wasrapidly growing as a distinct but largely circumscribedfield Zigler used that article and a soon-to-follow sisterarticle (Zigler 1969) ldquoDevelopmental Versus DifferenceTheories of Mental Retardation and the Problem of Moti-vationrdquo which was published in the American Journal ofMental Deficiency as forums to challenge the prevailing(so-called) defect approach that characterized virtually allof the other research on intellectual disability at the timeand continued to influence the field significantly into the1980s and to some extent even until today (for a collectionof pieces on the defect theories and early statements of thedevelopmental approach see Zigler amp Balla 1982)

The defect approach was largely characterized by amonolithic framework in which intellectual disability wasseen as a single entity that was essentially caused by oneor more of any number of proposed defects that werecommon to all persons with the diagnosis Typically inthis approach cognitive and neuro-cognitive functions orabilities were the primary focus as the empirical work inthe field was largely characterized by a race to identify thedeficit that was the primary cause or marker of reducedintellectual functioning Those who undertook this franticsearch emphasized broad constructs of cognition thatwere considered to be essential across all domains of func-tioning including cognitive rigidity memory processesdiscrimination learning and attentionndashretention capabili-ties among many others (for reviews of these approachesand their inherent problems from a developmental perspec-tive see Burack 1990 Zigler 1967 1969 Zigler amp Balla1982) With the use of experimental paradigms that weresophisticated for the time researchers presented evidence

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 21: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

8 Developments in the Developmental Approach to Intellectual Disability

of deficient performance in virtually all of these areas offunctioning and each specific defect was touted as thecentral cause of intellectual disability Unfortunately theevidence was consistently fatally flawed as the researchersfailed to consider essential and seemingly obvious con-ceptual and methodological issues such as the inherentdifferences in developmental level of functioning betweenpersons with and without intellectual disability of thesame CA the multiplicity of etiologies associated withintellectual disability the uniqueness of each etiology withregard to phenotypic expression and social factors relatedto the life experiences of persons with intellectual disabilitythat could affect performance on experimental tasks (forreviews see Burack et al 2001 Burack Dawkins et al2012 Zigler 1970 1973 Zigler amp Balla 1982)

In critiquing and debunking the various claims ofthe defect theorists Zigler and colleagues (eg HodappBurack amp Zigler 1990 Zigler amp Balla 1982 Zigler ampHodapp 1986 Zigler 1967 1969) highlighted the concep-tual and methodological concerns as the hallmarks of anascent approach to intellectual disability that would bebased on classic developmental theory The fundamentalprinciples of what would become known as the devel-opmental approach to intellectual disability were basedprimarily in the previous few decades of developmentaltheorizing by Heinz Werner and Jean Piaget but also intwo centuries of relevant history of medical scholarshipmore contemporary interpretations of statistical analy-ses of the plotting of IQ scores and the social-politicalzeitgeist of the era In their original and subsequentiterations over the past half-century Zigler and othersincluding especially Dante Cicchetti John Weisz andRobert Hodapp contributed immensely to a science andtransformative understanding of intellectual disability thatwere both more precise with regard to the developmentand functioning of each individual and more humanisticin that they were framed within notions of developmentthat are universal to all persons

In his initial seminal papers Zigler (1967 1969) pro-posed four principles that both challenged the dogmaof the time regarding persons with intellectual disabilityin one or more ways and that continue to be essentialguidelines for current work almost a half century lateralbeit in more nuanced and fine-tuned ways of thinkingthat have developed in the interim since their originalarticulation One the notion that functioning develop-ment and developmental trajectories differed accordingto etiology was consistent with centuries of evidence ofmeaningful differences in behavior in relation to the source(etiology) of the intellectual disability but challenged the

monolithic framework of intellectual disability as a specificdisorder and of the population of persons with intellec-tual disability as a single population that prevailed in the1960sndash1980s and continues to be at the heart of even somecontemporary research Despite resistance from leadersin the field to any type of etiological differentiation (fora review of examples of the opposition to this innovationby leading scholars in the field see Burack 1990) Ziglerrsquos(1967 1969) two-group approach involved the delineationbetween persons whose intellectual disability is due tofamilial factors such as genetic transmission of intelligenceand those for whom it is due to some type of organic insultThis dichotomy would presage a multiple group or even a1000+ group approach fueled by evidence of differencesin development across virtually all aspects of functioning(ie cognitive language social emotional) (eg Burack1990 Burack Hodapp amp Zigler 1988 1990 BurackRusso et al 2012 Dykens Hodapp amp Finucane 2000Howlin Charman amp Ghaziuddin 2011 Tager-Flusberg1999) The need for this type of precision continues to growas evolving technology continues to enhance our abilitiesto identify highlight and compare sub and sub-sub group-ings of specific etiological groups (eg Romano et al2014 Dimitropoulos Ferranti amp Lemler 2013) as wellas sub- and sub-subcomponents of the various domainsof everyday functioning (eg attention working mem-ory language social skills) (Iarocci Porporino Enns ampBurack 2012 Jarrold amp Brock 2012 Russo DawkinsHuizinga amp Burack 2012 Vicari 2012)

Two grounded in the developmental theories of JeanPiaget (1970) and Heinz Werner (1948 1957) Ziglerrsquos(1967 1969) adherence to the traditional developmen-tal principles of an organized coherent and systemicorganism led to the delineation of universal patterns ofdevelopmental sequences and structures among personswith familial intellectual disability those whose low IQscores seem to arise from the genetic transmission of intel-ligence rather than any type of physiological or organicldquoinsultrdquo (for a discussion see Zigler amp Hodapp 1986)According to Zigler development at least in this groupwhich represents essentially the ldquopurestrdquo form of intellec-tual disability that is unaffected by specific organic insultunfolds in a typical way but at a slower rate andwith a lowerasymptote This view that the integrity of development ismaintained even in the face of extreme delay contrastedmarkedly from the difference or defect approach in whichpersons with intellectual disability were discussed virtuallyalways within the framework of differences rather than ofsimilarities or universalities in relation to others In thetwo decades following Ziglerrsquos initial articulation of the

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 22: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

The Origins of the Developmental Approach to the Study of Intellectual Disability 9

developmental approach the notion of intact but delayeddevelopment would be tested extensively by Weisz andcolleagues (Weisz 1990 Weiss Weisz amp Bromfield 1986Weisz amp Zigler 1979) and extended conceptually to includepersons with Down syndrome by Cicchetti and colleagues(Cicchetti amp Beeghly 1990 Cicchetti amp Pogge-Hesse1982 Cicchetti amp Sroufe 1976 1978 Wagner Ganiban ampCicchetti 1990) This latter extension to include personswith Down syndrome within a developmental frameworkrevolutionized the developmental approach to intellectualdisability by the de facto inclusion of all persons with sometype of organic etiology whose impairments and profilesof functioning seem qualitatively different from the typicalpopulation In an era of considerable debate and discussionabout the integrity and legitimacy of developmental theory(for a discussion see Bronfenbrenner Kessel Kessen ampWhite 1986) it also would lead to an essential expansionof developmental theory to a more liberal approach thatwould include more variability at least in terms of groupdifferences than was considered in the more conservativeclassic developmental approaches articulated by Zigler(Cicchetti amp Pogge-Hesse 1982 Cicchetti amp Ganiban1990 Hodapp Burack amp Zigler 1990) This contributioncan also be seen as essential to amore nuanced understand-ing of the extent to which various aspects of developmentare related to each other in an inherent versus a happen-stance manner (Hodapp amp Burack 1990 2006) and as theprecursor to neuroconstructivism (Karmiloff-Smith 19982009) and other approaches focused on the trajectory ofgenendashbrainndashbehavior relationships within specific etiolog-ical groups (for examples regarding Williams syndromesee Elsabbagh amp Karmiloff-Smith 2012 Landau 2012for an example regarding fragile X see Cornish BertoneKogan amp Scerif 2012)

Three Ziglerrsquos emphasis on mental rather than chrono-logical age in experimental and observational comparisonsbetween persons with and without intellectual disabilityled to essential changes in the empirical study of intellec-tual disability with more fine-tuned questions regardinggroup differences in specific areas of functioning thatcould not simply be attributed to more general a prioridifferences in functioning between the groups In notingthat the finding that persons with intellectual disabilityperform worse than typically developing individuals ofthe same CA is circular Zigler (1967 1969) highlightedthe futility and obvious methodological flaws of the defectapproaches that unfortunately persist to some extenteven until today These approaches were derived largelyfrom the inevitable finding of deficits among persons withintellectual disability who were compared with typically

developing persons of the same CAmdashfindings that simplyconfirmed the obvious conclusion that lower functioningpersons perform at lower levels than higher functioningpeople With the increased influence of developmentalconsiderations the matching of persons with and withoutintellectual disability has become increasingly fine-tunedas groups are often now matched on a measure related tothe domain of functioning being studied thereby furtherdiminishing the possibility that findings of differences orsimilarities are a confound of the a priori relative strengthsor weaknesses associated with specific etiological groups(for relevant discussions see Burack 1997 Burack et al2012 Burack Iarocci Flanagan amp Bowler 2004 Jarrold ampBrock 2004 Karmiloff-Smith 2009)

Four the inclusion of the social-motivational personal-ity factors served to emphasize that the understanding ofpersons with intellectual disability needed to involve thewhole person Zigler (1967 1969) highlighted that the lifeexperiences of failure exclusion and segregation that arecommon to persons with intellectual disability (as wellas to other commonly marginalized populations) haveprofound effects on each individual Zigler even arguedthat apparent deficits found among persons with familialintellectual disability as compared with typically develop-ing persons of the same MA could be the consequencesof responding styles adopted by persons with intellectualdisability because of their experiences (for reviews seeMerighi Edison amp Zigler 1990 Zigler amp Bennett-Gates1999) These outcomes were most apparent among personswith intellectual disability who were institutionalized a farmore common occurrence when Zigler was writing thanit is today although the implications of segregation andexclusion are still pressing issues

These four transformative principles of the develop-mental approach as initially articulated by Zigler (19671970 1973) and as developed over the years by him andothers comprise the guiding framework for our discussionboth of persons with intellectual disability and of thescience in which they are studied We use these principlesof the developmental approach as a framework for inter-preting both essential historical and contemporary issuesin the study of intellectual disability and highlight waysthat the approach has itself developed since its originalarticulation a half century ago to provide an increasinglyfine-tuned and sophisticated science Conversely con-sistent with Cicchettirsquos (1984) premise that typical andatypical development are mutually informative the chal-lenges faced in the application of developmental principlesto intellectual disability provide insight into essential waysthat developmental theory can be adapted (Burack 1997

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range

Page 23: DEVELOPMENTAL PSYCHOPATHOLOGY - Startseite€¦ · Preface to Developmental Psychopathology, Third Edition xi DanteCicchetti Contributors xiii 1 DEVELOPMENTS IN THE DEVELOPMENTAL

10 Developments in the Developmental Approach to Intellectual Disability

Cicchetti ampGaniban 1990 Cicchetti amp Pogge-Hesse 1982Hodapp amp Burack 1990)

THE TWO-GROUP APPROACH AND BEYOND

Ziglerrsquos (1967 1969) original delineation of the two-groupapproach was ironic in that it hearkened back to even moreprecise medical and social classifications of intellectualdisability that predated it by decades and even centurieswhile challenging a contemporary field that was consider-ably less fine-tuned Although Ziglerrsquos dichotomy betweenfamilial and organic intellectual disability was an essentialenabler of the deconstruction of the field of intellectualdisability it can be seen as somewhat of a retreat frommore fine-tuned albeit not always accurate diagnostic andclassificatory schemes dating back centuries (for reviewssee Burack 1990 Scheerenberger 1982) As early as theend of the sixteenth and beginning of the seventeenthcentury the Swiss physician Felix Platter identified twobroad groupings of persons with intellectual disability Hedescribed one group of individuals as simple-minded sinceinfancy and the second as those persons born with identi-fiable physical anomalies that were the manifestations ofunderlying organic disorders that were the source of theintellectual disability This differentiation between personswith intellectual disability born with and without observ-able physical and physiological problems continued to behighlighted in even more precise classification systems bylater medical workers interested in intellectual disabilityFor example in the latter part of the nineteenth centuryboth John Langdon Down (1887) and William Wether-spoon Ireland (1877) provided detailed early classificationsystems in which they distinguished between intellectualdisability which appeared to be the consequence of somecombination of familial genetic environmental societaland cultural factors and that which was the outcome ofmore obvious genetic anomalies or other types of organicinsult Down classified persons with intellectual disabilityinto three general etiological groupings which he referredto as congenital accidental and developmental Irelanddelineated ten categories nine of which were associatedwith medical conditions that were linked with intellectualdisability whereas the tenth was labeled as idiocy bydeprivation

In the subsequent classification systems of the twen-tieth and twenty-first centuries the number of genetic ororganic conditions associated with neurological problemsand intellectual disability grew rapidly as a result of increas-ingly sophisticated technologies and scientific advances

Current estimates include more than 1000 organic con-ditions associated with intellectual disability (Hodapp ampBurack 2006) although the meaningfulness of that num-ber is diminished by the realization that current technologyincreasingly allows us to identify the substantial effectson performance of even relatively subtle neurological orphysiological differences across even persons with the samesyndrome (eg for a discussion of within-group differencesamong persons with fragile X see Romano et al 2014 fora discussion of genetic subtype differences among personswith Prader-Willi syndrome see Dimitropoulos Ferrantiamp Lemler 2013)

Ziglerrsquos Emphasis on Familial Intellectual Disability

In delineating the two-group approach Ziglerrsquos primaryinterest as a developmentalist was with the persons withintellectual disability especially in the mild to moderaterange whose etiology could be considered cultural-familial(for the rest of the chapter we refer to this groupingas familial)mdasha classification conceptually similar toPlatterrsquos simple-minded from birth Downrsquos developmen-tal in nature and Irelandrsquos idiocy by deprivation (fortwentieth-century systems of classification by etiologyalso see Kephart amp Strauss 1940 Lewis 1933) Consistentwith these earlier frameworks Zigler argued that somecombination of familial-genetic and environmental factorsaffect the development of intelligence and the occurrenceof intellectual disability among this group (Hodapp ampDykens 2001 Zigler amp Hodapp 1986) As predicted byZigler and Hodapp current conceptualizations provideincreasingly complex but precise frameworks of the genetictransmission of intelligence and its relation to the environ-ment in general and especially in relation to the occurrenceof familial intellectual disability (for discussions seeIarocci amp Petrill 2012 Shulman et al 2011)

Persons with familial intellectual disability are charac-terized by IQ scores that are typically in the mild or some-times high moderate range as they represent a statisticallyexpected downward extension of the typical IQ range andcan be thought of as those who were simply at the low endof the normal distribution of IQ (Lewis 1933 Pearson ampJaederholm 1914 Penrose 1963 Zigler 1967) Accordingto Ziglerrsquos conceptualization familial intellectual disabilityis simply the case of development that occurs at a slowerrate but along the normal continuum of intellectual devel-opment This is consistent with the observation that bothindividuals with familial intellectual disability and personswith IQs in the lower end of the typical range are likely tohave at least one parent with an IQ in or near the range