Prognosis in Autism Spectrum Disorders

1. Prognosis in Autism Spectrum Disorders Megan Farley, M.S. Research Associate Utah Autism Research Program University of Utah

2. Why study adults with ASD’s? • Outcome is variable for this group • Identifying developmental features that have predictive utility may inform treatment to support best outcomes • Outcome information may illustrate specific phenotypes for genetic research

3. Educational Objectives: • Examine implications of changing prevalence on adult outcome findings • Summarize what is known about adult outcome for people with autism • Review outcome research on adults with higher childhood IQ’s and Asperger Syndrome • Consider approaches to treatment and support for adults with ASD’s

4. 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

5. Outcome Variables • Mortality • Current autism characteristics/diagnosis • Education & employment history • Independence & social relationships • Psychiatric history • IQ, academics, & adaptive behaviors • Language ability • Behavioral problems • Stability of IQ & variables related to outcome • Composite ratings of outcome

6. 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

7. 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

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

9. Adaptive Behavior and IQ

10. 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

11. 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

12. Is it Asperger’s or Autism and Average IQ? • Research yields few differences • Distinction in research most often over early language ability • Bias among clinicians • Strategies seem equally appropriate regardless of diagnostic label

13. 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% • Self-disclosure

14. Treatment of Adults with Autism • May have late diagnosis/limited access to services due to previous success • Needs are highly variable but resources are limited • Social skills • Leisure skills • Job coaching & supervision • Co-morbid depression is treatable • Parents worry about the future • Guardianship • Housing

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

16. 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)

17. Diagnostic Status • 35 of 37 had lifetime ADI autism diagnosis • Remaining 2 met on Soc + Comm domains; each got a score of 2 (cutoff 3) on RR domain • ADOS • Module 1: n = 2; 2 autism • Module 2: n = 3; 3 autism • Module 4: n = 32; 21 autism, 4 PDDNOS, 6 DNQ

18. Cognitive Abilities • Global childhood/FSIQ adulthood (n = 29) • 10 increased >= 1 SD • 7 decreased >= 1 SD • Nonverbal childhood/PIQ adulthood (n = 24) • 6 increased >= 1 SD • 5 decreased >= 1 SD • Verbal childhood/VIQ adulthood (n = 19) • 7 increased >= 1 SD • 2 decreased >= 1 SD

19. Adaptive Behavior • FSIQ M = 89.86 (n = 29, SD = 29.67) • Adaptive Behavior Composite M = 68.21 (SD = 28.64) • Communication M = 67.41 (SD = 31.52) • Daily Living M = 80.97 (SD = 30.34) • Socialization M = 65.52 (SD = 28.09)

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

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

22. 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