Megan Farley, Ph.D.
megan.farley@hsc.utah.edu
May 25, 2011
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Review the literature on autism in adulthood
 Prognosis
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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
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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
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Adaptive behavior ratings tend to be lower
than what would be expected based on IQ
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Depression & anxiety are major comorbid
conditions
Less than 40% are employed in regular,
supported, or sheltered work
6% marry
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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
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FSIQ tends to remain stable, with
overall increases in VIQ and
decreases in PIQ
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May actually improve in adolescence
Forensic issues
Employment – 5% to 55%
Semi-independent or independent living –
16% to 50%
1984-1988
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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
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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
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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
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Very Good: n = 10 (25%)
Good: n = 10 (25%)
Fair: n = 13 (32%)
Poor: n = 7 (18%)
Very Poor: n = 0 (0%)
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7 participants with seizure disorder, 2 of these
previously remitted
 Very Good = 2
 Good = 2
 Fair = 1
 Poor = 2
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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
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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
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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
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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
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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
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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.
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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.
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Eligibility-based, not an entitlement
Generally covers all areas of life, not just daily
occupation and healthcare
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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.
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Access to adult services is severely restricted
due, in part, to:
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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%
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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
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Plan early – work towards work
Department of Workforce Services
Vocational Rehabilitation
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IPE – Individualized Plan for Employment
Assessment/Eligibility
Some training support
Counseling
Medical/Psychological treatment
Assistive technology
Job placement
Follow-up services
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Disability Services
Community College
Vocational/Technical Schools
Basic Adult Education
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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.
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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
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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.
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Neurodiversity Movement
Concern about language and attitudes
regarding “curing” or “defeating” autism
http://isnt.autistics.org/