Megan Farley, Ph.D.megan.farley@hsc.utah.eduMay 25, 2011

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

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

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 adolescenceRisk of seizure onset in adolescence

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

Depression & anxiety are major comorbid conditions

Less than 40% are employed in regular, supported, or sheltered work

6% marry

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

May actually improve in adolescenceForensic issuesEmployment – 5% to 55% Semi-independent or independent

living – 16% to 50%

1984-1988

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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.

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%

Comorbid psychiatric conditions are treatable

Apply for DSPD NOWConsider guardianshipNeed to apply for SSI when student

turns 18Try to get Voc Rehab personnel to

attend transition-planning IEP’sSelf-disclosure

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

Disability ServicesCommunity CollegeVocational/Technical SchoolsBasic Adult Education

Living with familySupported living arrangementsGroup homes

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

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.

Neurodiversity MovementConcern about language and

attitudes regarding “curing” or “defeating” autism

http://isnt.autistics.org/