jacksonville-2018-saulnier-slides · 2018-03-12 · marcus autism center, children’s healthcare...

3/8/18

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Fostering the ”Ability” in Disability: Understanding the Importance of Adaptive Behavior in ASD

10th Annual Autism SymposiumMarch 14th 2018

Celine A. Saulnier, PhDAssociate Professor, Division of Autism & Related DisordersDepartment of Pediatrics, Emory University School of MedicineMarcus Autism Center, Children’s Healthcare of Atlanta

2Marcus Autism Center

Disclosures

• As co-author of the Vineland Adaptive Behavior Scales, Third Edition, I receive royalties from Pearson Assessments

• As co-author of Essentials of Autism Spectrum Disorders Evaluation and Assessment, I receive royalties from Wiley


Learning Objectives

1. Define adaptive behavior and differentiate adaptive behavior from cognitive ability

2. Identify adaptive behavior profiles in ASD across levels of cognition and age

3. Discuss the association between adaptive behavior deficits in ASD and adult outcome

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Comprehensive Diagnostic Evaluations for ASD

Diagnostic Evaluations are Two-Fold:

1. Need for conducting a thorough developmental history• Parent/Caregiver report• Teacher report (older children)

2. Need for conducting direct testing with the child• Profile of developmental/cognitive skills• Profile of speech/language/communication skills• Profile of adaptive behavior• Direct observations of social-communication, play/interaction

skills, & restricted, repetitive and unusual behaviors (i.e. diagnostic assessment for autism symptomatology)


Intellectual Disability (DSM-5)

§ Deficits in cognitive functioning (“scores of approximately two standard deviations or more below the mean”)

§ Deficits in adaptive functioning (e.g., communication, daily life, social participation, and independent living)

§ Onset in the developmental period

• Severity Levels: –Mild:–Moderate:– Severe:– Profound:


Differentiating Cognition from Adaptive Behavior§ Cognitive ability is generally defined an individual’s

repertoire of skills that are either innate or acquired.

• Skills that an individual is capable of performing

§ Adaptive behavior is generally defined as performance of skills that are necessary for personal and social sufficiency

• Skills an individual does perform, independently, in daily activities (i.e., without prompts, supports, reminders)

Adaptive Behavior is the DOES DO, not the CAN DO

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The Normative Curve

55 70 85 100 115 130 145

-3 -2 -1 0 1 2 3MEAN = 100

STANDARD DEVIATION = +/- 15

Average Range of Cognition & Adaptive Behavior

Intellectual Disability(IQ & Adaptive Behavior <70)

IntellectuallyGifted


Characteristics of Adaptive Behavior

• Age-related

• Defined by the expectations/standards of others

• Defined by typical performance, not ability

– It’s the DOES DO not the CAN DO!

• Modifiable (can change over time)

• Adequate is the appropriate goal


The Autism Spectrum

Levels of Cognitive Functioning

Cognitive Impairment

SeizuresChildhood Disintegrative Disorder

“High Functioning” Autism

Asperger Syndrome

PDD-NOS

Medical Comorbidities Psychiatric Comorbidities

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Severity Levels for ASD in the DSM-5(APA, 2013)

Level 3: Requiring Very Substantial Support

• Severe deficits in verbal & nonverbal communication

• RRBs markedly interfere with functioning in all contexts

Level 2: Requiring Substantial Support

• Marked deficits in verbal & nonverbal communication

• Social impairments apparent even with supports in place

• RRBs are obvious & interfere with functioning in some contexts

Level 1: Requiring Support

• Social communication deficits cause noticeable impairments without supports in place

• RRBs significantly interfere in one or more contexts

• Problems with organization and planning hamper independence


Measures of Adaptive Functioning


Vineland Adaptive Behavior Scales(Sparrow, Balla, & Cicchetti, 1984 & 2005; Sparrow, Cicchetti, & Saulnier, 2016)

1. Interview Form*2. Parent/Caregiver Form3. Teacher Form

*Semi-structured interview with a caregiver is considered the Gold Standard

Domains of Functioning (birth – 90 years)• Communication: Receptive; Expressive; Written• Daily Living: Personal; Domestic; Community• Socialization: Interpersonal; Play/Leisure; Coping• Motor: Fine; Gross Motor• Maladaptive Behavior Index

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Profiles of Adaptive Behavior in ASD

HistoricallyAdaptive skills are often delayed & found to fall significantly below

age & IQ in ASDVolkmar et al., 1987; Carter et al., 1998; Klin et al., 2007

More RecentlyStandard scores are found to be higher than IQ in children with

intellectual disability & ASDPerry et al., 2009; Kanne et al., 2010

Of ConcernThe gap between cognitive ability and adaptive functioning appears

to widen with ageKlin et al., 2007; Saulnier & Klin, 2007; Kanne et al., 2010

Older age group has significantly lower adaptive skills across all Vineland domains than

the younger age group

Adaptive skills fall significantly below cognition in 2 independent

samples of boys ages 8 to 18 years

n = 1089

Longitudinal Gap between Cognitive Potential and Adaptive Behavior – “High Functioning”

2030405060708090

100

2 yrs 4 yrs 8 yrsAge at Visit

Stan

dard

Sco

res Vine Comm

Vine Social

Vine DL

DQ

(Saulnier, Chawarska, & Klin, IMFAR 2011)

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Longitudinal Gap between Cognitive Potential and Adaptive Behavior – “Low Functioning”

(Saulnier, Chawarska, & Klin, IMFAR 2011)

2030405060708090

100

2 yrs 4 yrs 8 yrsAge at Visit

Stan

dard

Sco

res

Vine Comm

Vine Social

Vine DL

DQ

When does this gap begin?(Bradshaw, Klaiman, Gillespie, Klin, & Saulnier, in preparation)

Infants who develop ASD: n=16Typically Developing (TD) Infants: n=34

0

5

10

15

20

25

30

35

40

45

50

12m 24m 36m

Gap Between Mullen Visual Reception & Vineland Interpersonal Age Equivalent Scores between 12 and 36 months

TD VR

TD INT

ASD VR

ASD INT


Current Epidemiological Statistics for ASDwww.cdc.gov/ncbddd/autism

IN THE GENERAL POPULATION:

§ 1 in 68

§ ASD risk in biological siblings: 1 in 5 (~20% risk)

§ When ASD can be reliably diagnosed:

§ 18-24 months when diagnosed by experienced clinicians

§ Median Age of Diagnosis: 4-5 years

§ Much later for disadvantaged populations

§ Comorbidity with Intellectual Disability:

§ 32%

MOST INDIVIDUALS WITH ASD HAVE INTACT COGNITION!

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Outcome assessed by:• Educational Attainments• Social Functioning

• Residential Status• Occupation

• Friendships

Second Adult Assessment – Age 46 yrs

Good/Very Good Fair Poor/Very Poor

59%

18%

23%

First Adult Assessment - Age 26 yrs

Good/Very Good Fair Poor/Very Poor

24%

24%

52%


What Predicts “Good Outcome”

• Best predictors of good outcome = intact IQ and functional language by age 5

Paul & Cohen, 1984; Howlin et al., 2004

• The majority of adults fail to achieve independent levels of employment and living, & fail to develop successful relationships

Billstedt, Gillberg, & Gillberg, 2005; Eaves & Ho, 2008; Howlin et al., 2004

• Adaptive skills may be a better predictor of positive adult outcome than IQ and language level, alone

Farley et al., 2009

Cognition?

Language?

Adaptive Behavior?

21

Optimal Outcome

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The Impact of ASD Interventions on Adaptive Behavior

§ Risperidone & Parent Training improve adaptive skills in children with ASDScahill et al., 2016; 2012; 2009; Bearss et al., 2015; Williams et al., 2006

§ Early intensive behavioral interventions (EIBIs) are effective in improving adaptive skills children with ASD

Warren et al., 2011

§ Early Start Denver Model is effective in improving adaptive skills in toddlers with ASD

Estes et al., 2015; Dawson et al., 2010

§ Inclusion of toddlers in community-based programs can produce improvements in adaptive skills

Stahmer, Akshoomoff, & Cunningham, 2011

§ Adaptive skill instruction within intervention is highly associated with positive outcome in adults with unimpaired baseline IQs

Farley et al., 2009


How do we make treatment and intervention

translate into functional independence?


Individual with Disabilities Education Act(IDEA, Part B)

* Eligibility is not automatic with a diagnosis of ASD» The needs of the child must demonstrate an

inability/impairment regarding “access to the general curriculum”

» Special education and related services are “designed to meet a child’s unique needs and prepare them for further education, employment, and independent living.”

“High Functioning” individuals with ASD who fare well academically often still meet eligibility requirements for

adaptive behavior that merit direct intervention!

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Individualized Education Plan (IEP)

• Give holistic view of strengths & needs» Direct observations» Evaluation of the child’s work» Clinical judgment

• Determine instructional implications• Appropriate accommodations• Specific measurable goals• Time-limited• Relevant to child’s needs• Measure educational progress• Transition requirements at age 16


Components of Appropriate Educational Settings• Ample opportunity for individual attention, individualized

approach, and small work group settings• Availability of a communication specialist• Opportunities for social experiences in fairly structured and

supervised activities• Focus on real-life skills• Willingness to adapt the curriculum in order to promote

success• In-house coordinator of services, advocate, counselor, “safe

address”


Communication between Parents & Teachers (Fein & Dunn, 2007)

• What is going on in the classroom vs. home? • What are areas of success & need in both contexts? • Convey realistic modifications to curriculum to address

academic as well as functional skills• Provide feedback about how well interventions are

working for their child• Generalization and maintenance of skills is critical:

Explicitly define how this is being measured and implemented across contexts

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Naturalistic Developmental BehavioralInterventions (NDBIs) (Schreibman et al., 2015)

• Emphasis on affectively engaged social exchanges for learning

• Intervention is implemented in natural settings (i.e. rather than table-top)

• Shared control between child and therapist/caregiver/teacher (rather than purely adult-directed)

• Utilizes natural contingencies and reinforcers

• Utilizes a variety of behavioral strategies to teach developmentally appropriate prerequisite skills


Developmental/Behavioral Approaches

• Pivotal Response Training (Koegel & Koegel, 2006)• Behavioral approach incorporating motivating reinforcers in

the natural environment• Early Start Denver Model (Smith, Rogers, & Dawson, 2006)

• Behavioral and developmental approach, using naturally reinforcing interactions between parents and children

• Hanen’s “More than Words” (Sussman, 1999)• Shaping functional communication through techniques like

expectant waiting• Early Social Interaction (Amy Wetherby)

• Parent-coaching model to enhance social engagement during everyday naturalistic activities


Effective Social Skills Training

Kathy Koenig, MSNYale Autism Program,

Yale Child Study Centerwww.autism.fm

Knowledge aboutautism spectrum disorders

Typically developing children willing to serve as mentors

Motivated, creative, and

patient teachers or facilitators

Knowledge of the characteristics of the

particular child

Appropriate setting and context

A specific, limited set of behavioral objectives

A method for evaluating progress

Activities that are social and fun!

Basic knowledge of behavioral principles of

intervention

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Social StoriesCarol Gray & Meredyth Edelson – thegraycenter.org

Social Stories are useful for teaching:

• Routines

• How to do an activity

• How to ask for help

• Emotion regulation

• Understanding perspectives & intentions

• Conversational exchanges

• Idioms/Figures of Speech/Sarcasm


Figures of SpeechCarol Gray & Meredyth Edelson – thegraycenter.org

• Often, people say things that mean something different from what the words might normally mean

• Sometimes, people say, “Kiss my butt,” but they certainly don’t mean that they really want someone to kiss their butt

• People usually say this when they are frustrated with the person they are talking to or arguing with

• “Kiss my butt” is a rude way of saying, “Be quiet,” or “Leave me alone.”


”Higher Order” Conversational Skills

§ Knowledge of conversational rules

§How to initiate, sustain, & appropriately end

§How to stay on topic not of one’s interest

§How to ask questions & offer information

§ Ability to self-monitor

§Monitor eye gaze

§Monitor voice modulation & prosody

§Monitor stereotypic behaviors

§ Ability to peer-monitor (i.e. read the social cues of others)

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The Autism Spectrum

Levels of Adaptive Functioning

Daily Living Skills (ADLs)

• Dressing• Bathing• Toileting• Feeding• Mobility• Medical management

Functional Independence

• Social Awareness• Emotional Awareness• Personal Care• Career Development• Community Navigation• Financial Management


Peer Training

§ Peer tutors can positively impact the social development of children with ASDs (Pierce & Schreibman, 1997; Strain, 2001)

§ Trained peers are more effective than untrained peers (Barron & Foot, 1991)

§ A training program for children should include descriptive and explanatory information (Campbell, Ferguson, Herzinger, et al., 2004)

§ Children who have information about autism rate their peers with autism more positively than children with no information (Campbell et al., 2004)


Video Modeling

§ Using video to target social, functional, conversational, and play skills§ Bellini, S & Akulian, J. (2007). A meta-analysis of video-modeling and

self-modeling for children with ASDs, Exceptional Child, 73, 261-284.

Model Me Kids The Social Express

modelmekids.com thesocialexpress.com

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Perspective Taking/Theory of Mind

Michelle Garcia WinnerThinking About YOU Thinking About ME, 2nd Editionwww.socialthinking.com

Brenda Smith MylesThe Hidden Curriculum: Practical Solutions for Understanding Unstated Rules in Social Situations


Insight and Awareness into Social & Emotional Experiences• Insight into nature of relationships• Insight into emotional experiences• Insight into physical and sexual experiences

• Insight into how to set and obtain immediate and future goals• Insight into one’s own disability

• What does being a friend mean to you?• How do you know if someone is your girlfriend or boyfriend?• Why do you think some people get married?• What things do you do that might annoy others?• Do you or other kids your age ever feel lonely?• Are there things you can do to feel better?• Do you have dreams for the future?• Have you ever saved your money to buy something?


Addressing “Maladaptive” Behaviors

BEHAVIOR = COMMUNICATION

§ Maladaptive behaviors should not be automatically seen as willful or malicious

§ Always ask WHY the child is behaving in some apparently maladaptive way

§ Maladaptive behaviors should be managed within the context of a comprehensive intervention program

Ø Teach more functional communication strategies

Ø Decrease/Eliminate maladaptive communication behaviors

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Assess what Triggers & Sustains Behavior

FUNCTIONAL BEHAVIOR ASSESSMENT

Antecedent:What triggers the behavior?

Behavior:What is the target behavior?

Consequence:What happens as a result of the behavior that sustains it over time?


Parent Training for Disruptive BehaviorBearss et al., 2015, Journal of the American Medical Association

• Disruptive behavior in ASD results in significant burden on the family• Higher stress/depression in parents of ASD compared to ID or TD

parents (Bristol et al., 1993; Olsson & Hwang, 2001; Yirmiya & Shaked, 2005)

• Parent inclusion in treatment is not the norm – despite the law• Parents therefore have difficulties with generalization of skills that

were learned in different contexts• Children present differently across contexts (“there are no problems

at school...”)• High rate of accommodation of disruptive behavior by parents• E.g., parents dress, feed, bath the child• Need for “walking on eggshells”

• Parents need specific instruction on techniques to improve core symptoms, reduce challenging behaviors, and improve adaptive functioning


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Emotional & Behavioral Supports

§ Support Groups

§ Cognitive Behavioral Therapy

§ Anxiety

§ Depression

§ Enhancing Emotional Insight & Awareness

§ Increasing Awareness of Social Victimization

§ Teaching Behavioral Regulation Strategies

§ Teaching Self Advocacy Skills

§ Teaching Self Management Skills

§ Teaching Problem Solving Strategies


Emotional & Behavioral Regulation

Cognitive Behavioral Therapy§ Explicit & directive therapy to teach strategies to

identify/label thoughts, feelings, as well as to control impulses§ Effective for more cognitively able individuals (i.e., mild ID or

above)

COPING CAT (www.workbookpublishing.com)§ Empirically validated manualized CBT (16 weeks) for

reducing anxiety/stress in children ages 8-13§ C.A.T. workbooks for ages 14-17


Safety and Risk

• Nearly half of youth with ASD arevictims of bullying during high school

• Over ¼ (27%) of adolescents engage in some type of wandering behavior

• Very low rates of criminal justice involvement. ~4% of young adults report being stopped and questioned by police

• ~1/4 of autistic adults who are able to self-report say they have had sexual intercourse. Around 1/3 of these use protection or birth control

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Puberty and Self Care

Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism (Wrobel, 2003)

Making Sense of Sex: A Forthright Guide to Puberty, Sex and Relationships for People with Asperger’s (S. Attwood, 2008)


Needs to Consider for Adulthood

• Register for appropriate government services

• DDS

• Social Security

• Guardianship

• Probate Court

• Make decisions for after the child reaches 18 years old

• Housing

•Medical

• Financial

• Legal Consultation

• Cost-of-care liability

• Special Needs Trust


Transition Planning:National Autism Indicators Report: Transition into Young Adulthood, 2015

• IDEA recommends transition planning to “start before the student turns 16”

• 58% of youth with autism had a transition plan in place by the federally required age

• 60% parents participated in transition planning

• Over 80% of parents felt planning was useful

• 1/3 of autistic youth who were capable of responding to survey said they wanted to be more involved in transition planning

Reality:

Start thinking about fostering independence upon diagnosis

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Transition Planning

• Focus on individual’s areas of strength & interest

• Ensure that circumscribed interests/perseverations do not become all-consuming & interfere with functioning

• Goals need to be included in the IEP

• Goals need to be age/capacity appropriate and measurable

• Involve the individual with ASD in the planning

• Identify necessary accommodations

• Expose the individual to a variety of activities that will prepare for successful college and/or vocational placement, as well as independent and successful community living and social relationships

MAKE EVERYTHING PRACTICAL & MEANINGFUL!!!!


Vocational Training

• Social Skills Necessary for Navigating the Workplace:

» Conversational Skills

» Monitoring Stereotyped Behaviors

» Anxiety-related Vulnerabilities

• Daily Living Skills

» Grooming & Personal Presentation

» Letter Writing Skills

» Interviewing Skills

• Job & Life Coaches

» Setting realistic expectations

» Fostering self-management skills and independence

» Providing compensatory strategies and supports

“You just have to make the transition from weird

to eccentric and then you’re OK”

- John Elder Robison


Barriers to Future Planning

§ Poor fit between needs and available resources§ Knowledge exists but not disseminated§ Financial constraints limit support resources and

housing/transportation opportunities§ Overspending of money earned§ Roommate conflicts§ Coping/psychological adaptation/personal motivation§ Extended unemployment after job loss§ Poor housekeeping§ Legal trouble§ Susceptible to abuse or exploitation by others§ Pregnancy without family support

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College Supports

§ Organizational Supports§ Visual schedules / Visual aides§ Daily Organizers§ Tablets/Smartphones

§ Accommodations § Calculators, laptops§ Sitting in close proximity to teacher§ Extended time for assignments§ Behavioral / Reward system

§ Personal Supports§ Personal Note-taker§ Para-professional/Aide/Coach§ Learning Specialist

Opportunities for supports are more likely when disability is disclosed


Life Skills Training


Family and Community Support

§ Family involvement at every step!!!

§ Generalization and maintenance of skills learned in intervention program to community and home!!!

§ Support for parents, siblings, & others

§ Support from community – congregations, colleges, work place

§ Parent support networks

§ Sibling support networks

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Thank You!

Ami Klin, PhD

Sara Sparrow, PhD

Domenic Cicchetti, PhD

Diane Goudreau, M.Div.

John Kamp, PhD

Many thanks to all the children and families that contribute to our knowledge and understanding of adaptive behavior!

jacksonville-2018-saulnier-slides · 2018-03-12 · marcus autism center, children’s healthcare...

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