5/19/2011. ASD: Overview

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1 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 /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 1

2 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 2

3 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, treatment 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 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 3

4 Organized/funded as a public-private partnership in 2008 Modeled on the CA Dept of Developmental Services Project 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) MAGI Process 1 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 4

5 MAGI Process 2 MAGI group nominations from PIT, colleagues & sponsors Predominantly professionals 40 invited: 38 accepted Sponsors and Div Dev Disabilities staff arranged meetings 1 st 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 ( 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 Developmental 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 5

6 PIT Leadership Janet Farmer John Mantovani Steve Kanne Michele Kilo 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 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, clinicallyoriented 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 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 6

7 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: Cohen et al (2006) Dev & Behav Pediatrics 27: Eikeseth et al (2007) Behav Modification 31: Howlin P (2008) J Intellect Disabil Res 52: (10) 817 Remington et al (2007) Am J Ment Retardation 112: *Rogers & Vismara (2008) J Clin Child Adolesc Psychol 37:8-38 Sallows & Graupner (2005) Am J Ment Retardation 110: *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 1 st Concern: MO Mean age of concern for MO families using the IAN site is between months for autism/pdd (NOS) and 31 mos for Asperger Disorder (IAN Data) *Accessed 12/10 7

8 ASD: Delay to Diagnosis: MO Lag from parental concern to dx for MO families: Autism/PDD (NOS) months Asperger Syndrome 61 months (IAN Data) *Accessed 12/10 ASD: Age of 1 st Concern: CT Mean age of concern for CT families using the IAN site is between months for autism/pdd (NOS) and 31 mos for Asperger Disorder (IAN Data) *Accessed 12/10 ASD: Delay to Diagnosis: CT *Accessed 12/10 Lag from parental concern to dx for CT families: Autism/PDD (NOS) months Asperger Syndrome 60 months (IAN Data) 8

9 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 & 1 st Steps, preschools, 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 9

10 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 culturallysensitive 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 10

11 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 11

12 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 12

13 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 13

14 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 14

15 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 15

16 Connecticut Counties CT Data CT has ~880,000 children <18 years Based on CDC data this would indicate that there are between children affected by ASD For more information or to order the Guidelines or Summary: Funding for publication and dissemination provided by the Missouri Foundation for Health 16