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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