Megan Farley Ph D megan farleyhsc utah edu

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 Outline considerations for supporting adolescents with ASD and their families through the transition to adulthood Outline current status of services for adults with ASD

Research Literature on Autism in Adulthood

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

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

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

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

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

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%

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

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

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

Follow-Up of 40 Adults with IQ > 70

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

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

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

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

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

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

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

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 schoolbased services to adult services and lifestyles Explore potential predictors of outcomes Understand natural development of latent factors associated with adult development

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

Supporting People with ASD in the Transition to Adulthood

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.

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 transitionplanning 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.

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.

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%

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

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

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

Residential Options Living with family Supported living arrangements Group homes

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.

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

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.

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