Megan Farley, Ph.D. [email protected] May 25, 2011.
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Transcript of Megan Farley, Ph.D. [email protected] May 25, 2011.
Megan Farley, [email protected] 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/