1. Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011

2.  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

4.  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.  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.  Adaptive behavior ratings tend to be lower than what would be expected based on IQ

7.  Depression & anxiety are major comorbid conditions  Less than 40% are employed in regular, supported, or sheltered work  6% marry

8.  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 is very variable  FSIQ tends to remain stable, with overall increases in VIQ and decreases in PIQ

9.  May actually improve in adolescence  Forensic issues  Employment – 5% to 55%  Semi-independent or independent living – 16% to 50%

10. 1984-1988

11.  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.  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

14.  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.  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.  Very Good: n = 10 (25%)  Good: n = 10 (25%)  Fair: n = 13 (32%)  Poor: n = 7 (18%)  Very Poor: n = 0 (0%)

17.  7 participants with seizure disorder, 2 of these previously remitted  Very Good = 2  Good = 2  Fair = 1  Poor = 2

18.  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.  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.  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.  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.  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

24.  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.  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.  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.  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.  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.  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.  Disability Services  Community College  Vocational/Technical Schools  Basic Adult Education

31.  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.  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.  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.  Neurodiversity Movement  Concern about language and attitudes regarding “curing” or “defeating” autism  http://isnt.autistics.org/ http://isnt.autistics.org/