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  • 1.Living as an Adult with Autism in Washington State: Hope for the Future Gary Stobbe, MD Director, UW Medicine Adult Autism Clinic May 31, 2014 www.forrestsargent.com

2. OBJECTIVES What is the current state for adults with ASD Where do we see barriers (and opportunities) What are we doing and where are we headed 3. - 50,000 individuals with ASD enter adulthood in the US annually based on current CDC estimates of 1 in 68 (Wang, 2014) 4. ASD IN WASHINGTON STATE Question how many individuals are currently living in Washington State with ASD? How many are adults? Answer we dont know o (David Maltman, Policy Analyst, Washington State Developmental Disabilities Council, 5/2014) 6,984,900 estimated population in 2014 (over 100,000?) 5. ASD IN WASHINGTON STATE Seattle Childrens Autism Center o Opened August 2009 o Over 17,000 patient visits expected in 2014 o 4181 unique patients seen in 2013-14 (373 pts age 16-18) UW Medicine Adult Autism Clinic o Opened September 2012 o Over 500 unique patients seen since opening 6. UW MEDICINE ADULT AUTISM CLINIC 0 20 40 60 80 100 120 Total Patient Appointments Unique Patient Appointments Number of total and unique (new) patients seen per month Patient visits, total and unique, September 2012 April 2014 7. UWMAAC PATIENTS 3 PROFILES Smooth transitions o Goal of seamless transition to adulthood The drifters o Drift until crisis, often mental health related The undiagnosed o Typically high-functioning, numerous mental health issues IRB-approved chart review underway Chart review study and survey questionnaire underway o Thanks to Ventura Grant (Thanks Sue and Ed!) 8. Adult ASD Factors Impacting Trajectory Rock Alone www.forrestsargent.com Autism, is part of my child, its not everything he is. My child is so much more than a diagnosis. - S.L. Coelho, The World According to August One Good Friend 9. DSM-IV Pervasive Developmental Disorders Language/ Comm. Deficits Repetitive Behaviors/ Restricted Interests Social Impairment PDD -Delay/abnormal behaviors prior to age 3 -Sub-catagories Autistic d/o, Aspergers, PDD/NOS 10. DSM-5 Autism Spectrum Disorders Persistent Deficits in Social Communication and Social Interaction Restrictive/ Repetitive Patterns of Behaviors, Interests, or Activities ASD -Must be present in early childhood (age 8 or less) -No sub-categories (with/without ID and/or language impairment) 11. DSM THE HUMBLE TRUTH so far, we dont have rigorously tested, reproducible, clinically actionable biomarkers for any psychiatric disorderwe need a decade of intense scientific work from molecular factors to social determinants to understand normal and abnormal behavior, based on a deep understanding of mechanisms. Thomas Insel, MD Director, NIMH (Am J Psychiatry, 2014) 12. OUTCOME TRAJECTORIES 3-25% optimal outcome (Helt, 2008) Roughly 60% make progress but continue to require some types of support Approximately 20% remain severely impacted requiring 24/7 support (Seltzer, 2004) 20% poor outcome 60% moderate progress 20% optimal outcome 13. VARIABLES IMPACTING OUTCOME Intrinsic factors o Cognitive ability o Severity of core autistic deficits communication, social, restricted interests (motivation) o Behavioral disturbances o Other mental/medical health co-morbidities Extrinsic factors o socioeconomic o access to services/early intervention o case management (Myers, 2012) 14. TRAJECTORY INFLUENCES NEED Considerations o Guardianship? POA? o Post-secondary school? Employment? o Living arrangement? 15. Adult ASD Barriers to Success Metal Sky www.forrestsargent.com 16. BARRIERS TO SUCCESS Lack of adult providers o Physicians serving adults with ASD, only 20% received training during residency (Bruder, 2012) o Parents view PCPs as unable to assist vast majority of autism-related problems (Carbone, 2013) Lack of transition tools for pediatric providers Parents/caregivers delay; anxiety about future planning Lack of identifying person responsible for transition Financial barriers Transitions Clinical Report Authoring Group, 2011 17. THE NO SERVICES LIST 14,600 families eligible for services in WA, yet not receiving due to funding (Rosenthal, 2014) o Doesnt include individuals needed assistance but not meeting DDA eligibility DDA Eligibility (expected changes July 1, 2014) o DSM-IV or DSM-5 (severity level 2/3) o Adaptive skills > 2SD below mean o For DSM-5, IQ 1 SD below mean (