megan farley, ph.d. [email protected] may 25, 2011
TRANSCRIPT
![Page 1: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/1.jpg)
Megan Farley, [email protected] 25, 2011
![Page 2: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/2.jpg)
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
![Page 3: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/3.jpg)
![Page 4: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/4.jpg)
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
![Page 5: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/5.jpg)
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
![Page 6: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/6.jpg)
Adaptive behavior ratings tend to be lower than what would be expected based on IQ
![Page 7: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/7.jpg)
Depression & anxiety are major comorbid conditions
Less than 40% are employed in regular, supported, or sheltered work
6% marry
![Page 8: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/8.jpg)
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
![Page 9: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/9.jpg)
May actually improve in adolescenceForensic issuesEmployment – 5% to 55% Semi-independent or independent
living – 16% to 50%
![Page 10: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/10.jpg)
1984-1988
![Page 11: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/11.jpg)
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
![Page 12: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/12.jpg)
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
![Page 13: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/13.jpg)
![Page 14: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/14.jpg)
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
![Page 15: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/15.jpg)
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
![Page 16: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/16.jpg)
Very Good: n = 10 (25%)Good: n = 10 (25%)Fair: n = 13 (32%)Poor: n = 7 (18%)Very Poor: n = 0 (0%)
![Page 17: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/17.jpg)
7 participants with seizure disorder, 2 of these previously remitted Very Good = 2 Good = 2 Fair = 1 Poor = 2
![Page 18: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/18.jpg)
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
![Page 19: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/19.jpg)
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
![Page 20: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/20.jpg)
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
![Page 21: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/21.jpg)
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
![Page 22: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/22.jpg)
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
![Page 23: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/23.jpg)
![Page 24: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/24.jpg)
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.
![Page 25: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/25.jpg)
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.
![Page 26: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/26.jpg)
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.
![Page 27: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/27.jpg)
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%
![Page 28: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/28.jpg)
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
![Page 29: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/29.jpg)
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
![Page 30: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/30.jpg)
Disability ServicesCommunity CollegeVocational/Technical SchoolsBasic Adult Education
![Page 31: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/31.jpg)
Living with familySupported living arrangementsGroup homes
![Page 32: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/32.jpg)
![Page 33: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/33.jpg)
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
![Page 34: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/34.jpg)
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.
![Page 35: Megan Farley, Ph.D. megan.farley@hsc.utah.edu May 25, 2011](https://reader036.vdocument.in/reader036/viewer/2022062716/56649dba5503460f94aaac95/html5/thumbnails/35.jpg)
Neurodiversity MovementConcern about language and
attitudes regarding “curing” or “defeating” autism
http://isnt.autistics.org/