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Adulthood with Autism FAAST Group Seminar

Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011. Adulthood with Autism FAAST Group Seminar. Learning Objectives. Review the literature on autism in adulthood Prognosis Discuss Utah research on autism in adults

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Adulthood with Autism FAAST Group Seminar

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  1. Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011 Adulthood with AutismFAAST Group Seminar

  2. Learning Objectives • Review the literature on autism in adulthood • Prognosis • Discuss Utah research on autism in adults • Outline considerations for supporting adolescents with ASD and their families through the transition to adulthood • Outline current status of services for adults with ASD

  3. Research Literature on Autism in Adulthood

  4. DSM-III to DSM-IV • Earlier criteria (1980’s to mid-90’s) were narrower than DSM-IV (1994) • Adults in today’s longitudinal studies were diagnosed as children, with DSM-III • Increased prevalence likely due in large part to changing criteria • Implications for outcome studies

  5. Highlights from Adult Outcome Research • Mortality is 2-3 times greater than expected in general population • Lifelong condition, despite common reduction in symptoms of autism over time • Prognosis is “poor” or “very poor” for 60% • Risk of deterioration in adolescence • Risk of seizure onset in adolescence

  6. Highlights from Adult Outcome Research (cont’) • Adaptive behavior ratings tend to be lower than what would be expected based on IQ

  7. Highlights from Adult Outcome Research (cont’) • Depression & anxiety are major comorbid conditions • Less than 40% are employed in regular, supported, or sheltered work • 6% marry

  8. Highlights from Adult Outcome Research (cont’) • Outcome is highly variable in those with high childhood IQ’s • Near-average or better IQ & communicative phrase speech before age 6 needed for a chance at good outcome • Few individuals with childhood PIQ < 50 have a good outcome; outcome for those with a childhood PIQ > 50 is very variable • FSIQ tends to remain stable, with overall increases in VIQ and decreases in PIQ

  9. Outcome Research for High-Functioning Adults • May actually improve in adolescence • Forensic issues • Employment – 5% to 55% • Semi-independent or independent living – 16% to 50%

  10. Epidemiologic Survey of Autism in Utah (Ritvo et al., 1989) 1984-1988

  11. Epidemiologic Survey of Autism in Utah - Aims • Identify all cases of autism born between 1960 – 1984 and living in UT during survey period • Analyze heritability of autism in multiplex families • Identify pre-, peri-, and postnatal contributors to autism

  12. Epidemiologic Survey of Autism in Utah – Findings • 489 people were screened for autism • 241 were diagnosed with DSM-III autism • 138 were determined not to have autism • 110 were excluded from the study for various reasons

  13. Follow-Up of 40 Adults with IQ > 70

  14. Participants • 40 adults recruited from 75 eligible (53%) • Participants & non-participants compared on 14 shared variables • Sig. diff. only on single word acquisition (Participant M = 46 mos., Non-participant M = 26 mos.) • 37 men, 3 women (M:F = 12.3:1.0) • Childhood age M = 7.09 (SD = 4.13, range = 3.08 – 25.92) • Adult age M = 32.25 (SD = 5.58, range = 22.33 - 46.42) • Childhood IQ M = 87.10 (SD = 15.37, range = 71-137) • Child Nonverbal IQ > Verbal IQ (df 23, t = 2.92, p = .008

  15. Composite Outcome Categories • Very Good: achieving a high level of independence, having some friends and a job • Good: generally in work but requiring some degree of support in daily living; some friends/acquaintances • Fair: has some degree of independence, and although requires support and supervision does not need specialist residential provision; no close friends but some acquaintances • Poor: requiring special residential provision/high level of support; no friends outside of residence • Very Poor: needing high-level hospital care; no autonomy

  16. Outcome Adjustment • Very Good: n = 10 (25%) • Good: n = 10 (25%) • Fair: n = 13 (32%) • Poor: n = 7 (18%) • Very Poor: n = 0 (0%)

  17. Medical Conditions • 7 participants with seizure disorder, 2 of these previously remitted • Very Good = 2 • Good = 2 • Fair = 1 • Poor = 2

  18. Highlights • Diagnostic procedures may be insensitive to ongoing autism-related problems in adults with HFA • Well-developed self-care skills appear critical to adult success • Change in IQ distinguished between outcome groups, possibly supporting the use of interventions that produce positive change in IQ scores

  19. Current Research • Pursuing data collection from remaining 1980’s participants • Cost data • Comorbid psychiatric conditions • Identifying developmental features that have predictive utility may inform treatment to support best outcomes • Outcome information may illustrate specific phenotypes for genetic research

  20. Functional Outcome Factors • Approx. 170 additional adults from ongoing genetic studies, ages 17 and up (m=23.57, sd=2.93) • Have historical records dating back 5 to 10 years (m=6.99 years, sd=2.93) • 2/3 have IQ > 75

  21. Aims • Expand the sample of 20-Year Outcome study to include more people with higher IQs to better represent today’s diagnostic trend • Expand sample of 20-Year Outcome study to include more adults for analyses • Study transition experiences from school-based services to adult services and lifestyles • Explore potential predictors of outcomes • Understand natural development of latent factors associated with adult development

  22. Transition to Adulthood • Mirror data collection protocol for 20-Year study • For those aged 17 to 30, add • ARC’s Self-Determination Scale • TEACCH Transition Assessment Profile • Transition Planning Inventory • Transition Questionnaire

  23. Supporting People with ASD in the Transition to Adulthood

  24. Overview of National Status of Adults with ASD • Most adults with ASD are unemployed or underemployed • Most adults with ASD live with parents, siblings, or older relatives • IDEA transition requirements are generally poorly implemented for people with ASD SOURCE: Gephardt, P.F. (2009). The current state of services for adults with autism. Arlington, VA: Organization for Autism Research.

  25. A Focus on Transition Planning is Critical • Families matter in the lives of adults with ASD • In a 2008 internet-based study of about 200 families* • 67% of families did not know about available transition programs • 83% relied on family members for primary transition-planning help • 78% were unfamiliar with agencies that help with job development *Center for Autism and Related Disabilities, University of Central Florida (UCF CARD). January, 2009. Vocational Rehabilitation Service Models for Individuals with Autism Spectrum Disorders.

  26. Adult services Youth services • Eligibility-based, not an entitlement • Generally covers all areas of life, not just daily occupation and healthcare • Personal safety • Transportation • Leisure • Health/wellness • Sexuality SOURCE: Gephardt, P.F. (2009). The current state of services for adults with autism. Arlington, VA: Organization for Autism Research.

  27. Some Problems with Adult Services • Access to adult services is severely restricted due, in part, to: • Limited funding • Limited staff/resources • Strengths of the applicant • Location • Needed service does not exist • Turnover among support staff working with adults is 50% with a vacancy rate of 10-12%

  28. Transition Considerations • Comorbid psychiatric conditions are treatable • Apply for DSPD NOW • Consider guardianship • Need to apply for SSI when student turns 18 • Try to get Voc Rehab personnel to attend transition-planning IEP’s • Self-disclosure

  29. Planning for Employment • Plan early – work towards work • Department of Workforce Services • Vocational Rehabilitation • IPE – Individualized Plan for Employment • Assessment/Eligibility • Some training support • Counseling • Medical/Psychological treatment • Assistive technology • Job placement • Follow-up services

  30. Continuing Education • Disability Services • Community College • Vocational/Technical Schools • Basic Adult Education

  31. Residential Options • Living with family • Supported living arrangements • Group homes

  32. A smaller unit of service (e.g., supervised living in an apartment) appears to lead to greater inclusion in the community for the adult with ASD.

  33. Advancing Futures for Adults with Autism • Consortium of interested organizations • Aim to help adults with ASD “achieve their rightful place as participating members of society” • Define the state of supports for adults with ASD • Develop better ways to support adults with ASD • Develop strategies/change policy to implement changes

  34. Self-Determination • Encourage early, but don’t be surprised if it comes very slowly • Korin, E.S.H. (2007). Asperger’s Syndrome: an owner’s manual 2. for older adolescents and adults. Shawnee Mission, KS: Autism Asperger Publishing Co.

  35. Self-Advocacy • Neurodiversity Movement • Concern about language and attitudes regarding “curing” or “defeating” autism • http://isnt.autistics.org/

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