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OVERVIEW & SELECTED TOPICS

Jo h n F. M a n tov a n i , M . D.

Missouri Kids Count Data-reported 2009

~1.4 million < 18 yrs

CDC & P studies indicate a MO prevalence of ASD between 7.3-12.1/1000

This indicates that between 10,000-14,000 children and adolescents are affected by an ASD in Missouri

ASD: Overview

Autism spectrum disorders (ASDs) are a group of neurodevelopmental disorders characterized by impaired social interaction and communication, and by restricted interests and/or repetitive behaviors

Usually identifiable by age 3 years

Often associated with other physical and mental health conditions

Issues/challenges vary widely among affected individuals and change in individuals over time

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Importance of Early Diagnosis

There is strong evidence to support the value of early intervention for improving developmental outcomes in children with ASDs

As a result there is a growing need for early screening, diagnosis, assessment and initiation of treatment services

Importance of Early Diagnosis

Screening is necessary but insufficient for diagnosis

Diagnosis is necessary but insufficient for assessment

Assessment is necessary but insufficient for intervention

Intervention is necessary for improvement

WHAT IS IT?

A state-wide collaborative formed to standardize a

Missouri approach to screening, diagnosis and

assessment for intervention for those with ASD

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HOW DID IT BEGIN?

Missouri’s 2007 Blue Ribbon Panel on Autism

• 16 person panel charged with identifying MO’s ASD strengths and weaknesses—appointed by MO State Senate

• One year of public testimony and program review

• Report October 2008 noted challenges in

• Access to service

• Consistency of service: Dx, Assessment

& Intervention approaches

Missouri’s 2007 Blue Ribbon Panel on Autism

• 36 recommendations for improving quality of life for those with ASDs and their families

• Included establishing an Office of Autism Services and the

Missouri Commission on ASDs

• Recommendation 17: “improved and

consistent protocols for diagnosis, treat-

ment and care”

FIRST STEPS—Advice from California

Make it a “state-level document” More than a summary of national standards/consensus documents

Pick the right people for the group Acknowledged leaders from academic, practice and educational settings

Avoid possible and perceived biases associated with a single profession,

institution, or individual

30-45 people seems to be optimal working group size—strong facilitator and experienced advisors

Build consensus among stakeholders through the process Must accept the need for collaboration—not every idea will be included in

the final document

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Organized/funded as a public-private part-nership in 2008

Modeled on the CA Dept of Develop-mental Services Project 2001-02

Full support of the MO Commission on ASD appointed by MO Governors in 2008 & 2010

Sponsored by

• Thompson Foundation for Autism

• Missouri Division of Developmental Disabilities (DMH)

Project Initiation Team (“PIT”)—selected by sponsors:

Initiation of the Group Process—November 2008

Janet Farmer, Ph.D. (Psychologist)

Stephen Kanne Ph.D. (Neur0psychologist)

Michelle Kilo, M.D. (Dev. Pediatrican)

John Mantovani, M.D. (Child Neurologist)

Facilitator & advisors from CA project

“MAGI” Process—1

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“MAGI” Process—2

MAGI group nominations from PIT, colleagues & sponsors

Predominantly professionals—40 invited: 38 accepted

Sponsors and Div Dev Disabilities staff arranged meetings

1st Meeting held in Jefferson City 2/13/09

3 Committees established (Screening; Birth to 5; Age 6 to 22)

PIT chaired the committees; staff writer for each group

Web-site (www.dmh.mo.gov/mrdd/mrddindex.htm) established for literature sharing

Follow-up meetings: June 2009 and October 2009

Manuscript sent to printer January 2010

Emphasis on diagnosticians: 42 professionals and parents from across Missouri

• Physicians and psychologists (22)

• Therapists/other providers (9)

• Educators (6)

• Parents (4)

• Staff from Division of Develop-

mental Disabilities (1)

MAGI Process—3

PIT evolved to Project Leadership Team

Project Leaders took responsibility for the key sections of the book

Final Drafts reviewed/edited—on-line, telephone conference calls and two face-to-face meetings Introduction—All

Screening—Farmer

Diagnosis/(Assessment)—Kanne; Mantovani

Assessment—Kilo

Tables & Appendices—All

References—All

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PIT Leadership

The PIT

Established the core principles to underlie the MAGI document

Established the agenda for the MAGI meetings

½ to full-day PIT meetings preceded each MAGI meeting

Janet FarmerSteve Kanne

John MantovaniMichele Kilo

MAGI Project—The Basics

To encourage screening & to standardize the diagnostic and assessment process as a first step to improving access to intervention services for children/families affected by ASD

This mandates

Putting the programs where the children are

Equality of access across demographic groups and geographical regions

Standardization of diagnosis among professional groups

Availability of empirically-supported research interventions that bridge cutting edge research and pragmatically-focused, clinically-oriented treatment groups

MAGI Project: Core Concepts

1. DSM IV-TR is the current classification standard for the diagnosis of ASD

Comments/Concerns

The criteria are poorly applicable to children <3 years

DSM-V is due in 2013. The reports of the DSM-V NDD Work Group already note 3 areas of probable change Redefine ASD ; delete separate PDD (NOS) & Asperger Disorder groups

Modification of ADHD criteria to allow co-morbidity w/ autism

Delete Rett Disorder as an ASD and question validity of Childhood Disintegrative Disorder; probable modifier code for medical/genetic disorders with autism

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MAGI Project: Core Concepts

2. Early identification is essential for early therapeutic intervention and leads to a higher quality of life for child and family

Comments/Concerns

Growing controlled research support for efficacy in enhancing global functioning *Eikesath S (2009) Res in Dev Disabilities 30:158-178

Cohen et al (2006) Dev & Behav Pediatrics 27:145-155

Eikeseth et al (2007) Behav Modification 31:264-278

Howlin P (2008) J Intellect Disabil Res 52: (10) 817

Remington et al (2007) Am J Ment Retardation 112:418-438

*Rogers & Vismara (2008) J Clin Child Adolesc Psychol 37:8-38

Sallows & Graupner (2005) Am J Ment Retardation 110:417-438

*Reviews

MAGI Project: Core Concepts

3. Timeliness of diagnosis is critically important to the family and has an important impact on the probability of improved outcomes

Comments/Concerns

Delays in recognition and diagnosis are among the most frequent concerns of families of children w/ ASD

The mismatch between the cultural urgency placed on early diagnosis/intervention and the delays in the SDA system are among the biggest challenges we face

The MAGI Project should include timeliness and efficiency among the top priorities in establishing these standards

ASD: Age of 1st Concern: MO

Mean age of concern for MO families using the IAN site is between 17-18 months for autism/PDD (NOS) and 31 mos for AspergerDisorder (IAN Data)

*Accessed 12/10

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Lag from parental concern to dx for MO families:

Autism/PDD (NOS)20-29 months

Asperger Syndrome61 months (IAN Data)

*Accessed 12/10

ASD: Delay to Diagnosis: MO

ASD: Age of 1st Concern: CT

Mean age of concern for CT families using the IAN site is between 17-19 months for autism/PDD (NOS) and 31 mos for Asperger Disorder (IAN Data)

*Accessed 12/10

ASD: Delay to Diagnosis: CT

Lag from parental concern to dx for CT families:

Autism/PDD (NOS)17-29 months

Asperger Syndrome60 months (IAN Data)

*Accessed 12/10

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MAGI Project: Core Concepts

4. The screening, diagnosis and assessment (SDA) process of ASD presents different challenges through the individual’s life-span

Comments/Concerns

Based on awareness of the differing presenting concerns and developmental challenges at different ages and stages, the MAGI Project will need to structure the SDA process accordingly

The roles of primary & medical specialty health care providers, developmental therapists, state programs like PAT & 1st Steps, pre-schools, elementary, middle & high schools, & state agencies will vary considerably depending on age & other factors

MAGI Project: Core Concepts

5. Accurate diagnostic evaluation and assessment require collaboration and problem solving among professionals, service agencies and families

Comments/Concerns

Part of the MAGI Project challenge is to be aware of what currently exists in different regions of the state and to structure a process that builds on what is working, avoids duplication and promotes collaboration across disciplines, agencies and programs in the interests of the family and child

MAGI Project: Core Concepts

6. An interdisciplinary process is the recommended means for developing a coherent and inclusive profile of the individual with ASD

Comments/Concerns

Involvement of professionals from different disciplines is necessary but the issue of how many professionals of which disciplines are necessary at which stage for each child will need to be considered carefully during the MAGI Project

Preserving the value of multiple perspectives while improving timeliness and efficiency is a major part of the challenge

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ASD: Diagnostician: MO

In MO, 69% of responders were dxed by a specialist; 11% by a medical team, 6% by a primary care MD, 6% by a school team

*Accessed 12/10

ASD: Diagnostician: CT

•In CT, 75% of responders were dxed by a specialist; 8% by a medical team, 6% by a school team; 4% by a primary care MD,

MAGI Project: Core Concepts

7. The SDA process must be family-centered and culturally-sensitive

Comments/Concerns

Parents/care-givers are the experts on their child and the MAGI Project should recognize the partnership between professionals and parents that must exist for effective care

The SDA process should emphasize communication and family involvement as central in order to foster the concept of the family as an equal partner in the process

The needs, priorities, resources and cultural perspective of the family must be a primary focus and should be respectfully considered during the process

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MAGI Project: Core Concepts

8. Rapid developments in the field require regular review and up-dating of best practices and continuing education

Comments/Concerns

Every aspect of ASD is undergoing rapid development and keeping up is a major task for all of us

Multiple groups within MO are moving rapidly to expand and improve services for ASD—it will be critical to keep pace with the changing opportunities

Frequent up-dating of regional SDA standards are necessary and will be both challenged and facilitated by production of national standards which are on the horizon

Throughout the Guidelines, the role of the family is emphasized and Missouri-specific services are addressed.

• Clear, concise, actionable Guidelines supported by an innovative framework

• Missouri children are more likely to be properly screened, diagnosed, assessed for intervention planning as early as possible

• Improved access to these essential ASD services regardless of age, income, ethnicity, or region

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Missouri Innovations

Community Collaboration Model

Lead Diagnostic Clinician

Tiered Diagnostic Approach

Separation of Diagnosis from Assessment for Intervention Planning

Community Collaboration Model

Considers individuals and families within the context of multiple domains

Medical/health issues

ASD specific issues

Community/agency services

Social and environmental context

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Lead Diagnostic Clinician

Requirements for clinicians who make an ASD diagnosis

Missouri state licensure as a physician, psychologist or other mental health professional

Advanced training and clinical experience in the diagnosis and treatment of ASDs and related neurodevolopmental disorders, including knowledge about typical and atypical child development and experience with the variability within the ASD population

Lead Diagnostic Clinician

• Emphasis on clinical judgment of the diagnosing professional

• Depends on the clinical competencies of the professional

• Responsibility to ensure continuity of ASD care

• The lead clinician may be

• Team leader of multidisciplinary team

• Solo practitioner

• May or may not continue active role in individual’s care; primary responsibility is to coordinate next steps; foster communication

Awareness of Limitations

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“Tiered” Diagnostic Approach

Acknowledges reality of who is making most diagnoses in Missouri & the tension between timely diagnosis and waiting lists for testing

Tiered Approach

• Lead clinician determines the proper level of evaluation required for a diagnosis

• Each advancing Tier incorporates more sophisticated diagnostic tools and input

Tiered Diagnostic Process

Diagnosis & Educational Eligibility

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Diagnosis & Educational Eligibility

Distinction between Diagnosis & Assessment:

• Diagnosis: Answers the question: Does this child have an ASD and/or other developmental conditions?

• Assessment: Answers the question: What individual strengths and concerns should guide intervention planning

• This approach recognizes the importance of diagnosis as a gate-way to services and assessment as the process of establishing the specifics of those intervention services

Assessment for Intervention

• Practice parameters call for comprehensive evaluation in 7 key areas:

• Cognition

• Adaptive functioning

• Communication

• Social/emotional/behavioral functioning

• Sensory/motor functioning

• Medical/health status & ASD etiology (when known)

• Family functioning

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CT Data

CT has ~880,000 children <18 years

Based on CDC data this would indicate that there are between 6000-9000 children affected by ASD

Connecticut Counties

For more information or to order the Guidelines or Summary:

www.autismguidelines.dmh.mo.gov

Funding for publication and dissemination provided by the Missouri Foundation for Health