1. What Happens When he Grows Up, Doctor? Peter Szatmari MD Offord Centre for Child Studies McMaster University and McMaster Children’s Hospital

2. Common Questions about the Adult Outcome of ASD What do the latest studies show? Is outcome better now than it used to be? In Ontario during 60’s, 70% institutionalized. What is the prevalence of comorbid psychiatric problems? What are the health and social service needs of adults with ASD?

4. The Latest Adult Outcome Studies Howlin et al 2004; autism, IQ>50 Gillberg et al 2005; autism and atypical, all cases but most IQ < 50 Szatmari and Bryson 2007; AS and HFA, all with IQ > 70, late adolescence

5. Gillberg et al % Howlin et al % Very poor Poor Restricted Fair Good Very Good 57 21 13 8 0 12 46 - 19 10 12

6. Gillberg et al % Howlin et al % Mortality Epilepsy Independence Many autistic symptoms 5% 41% 4% 85% 1% 15% 3% 88%

7. Gillberg et al % Howlin et al % High school diploma Job Working independence Language. none/severe. Good - 3% 22% 33% 12% 50% 10%

9. Szatmari and Bryson 2006 HFA and AS seen at 4-6, 6-8, 9-12, 14-17, 17-19. HFA; IQ>70, met DSM-IV criteria by ADI AS; PDD symptoms in each domain but talk in phrases by 36 months and IQ>70 (most met ADI criteria for autism) Measures of symptoms (ABC) and adaptive functioning (VABS) over time

10. Social Outcomes among early Adol’s 36% of the group had a preferred friend of either sex or a best friend of the same sex. Buys gifts and remembers birthdays; 22% of the group do one and 36.2% do both. Has a group of friends or belongs to an organized club or group; 40% of the group. 30% of the group are going out to evening events with adult supervision and 12% are going out without adult supervision.

11. Prevalence of Good Outcome Asperger Syndrome HFA SOCIALIZATION20%2.6% COMMUNICATE20%5.1% FEW/NO SYMPT12.5%10.3%

13. Vineland Communication Domain

14. Vineland Socialization Domain

15. Autism Behaviour Checklist Sensory Domain

16. Differences AS & Autism Large differences at all outcome points AS and Autism; Parallel trajectories Key difference is timing in onset of fluent language Everyone gets better over time; early years the most difficult

18. Challenging Behaviours ASD has the most challenging behaviors of any developmental disability Are these behaviours stable? More common in HFA than AS?

19. Maladaptive Behaviors (VABS) Over Time in Children with High Functioning ASD (Autism Vs. Asperger Syndrome) **Clinically Significant is a score >12

21. Psychiatric Illness in late Adolescence Roughly 40% have anxiety/mood disorder Anxiety before depression Pure anx/mood = 31% Pure externalizing = 13% Both anx/mood and externalizing = 9% Any disorder =53% Slightly more common in AS than in HFA (60% vs 40%). Why?

22. Cognitive testing No Psychiatric Diagnosis Internalizing  Externalizing Cognitive Assessment Mean score Leiter IQ p-value =0.42 78.72 s.d.=20.18 90.19 s.d.=21.28 TOLD (grammatical comprehension) p-value =0.007 16.85 s.d.=11.11 22.50 s.d.=7.84 PPVT p-value=0.026 68.00 s.d.=32.67 84.00 s.d.=21.58

23. Adult Outcome of AS and HFA Challenging behaviours are stable over time and cause much family stress High prevalence/incidence of new co-morbid anxiety and mood disorders Two independent correlates of challenging behaviours & comorbid psych dis; low IQ/communication skills and high language skills

25. Bottom Lines from Outcome Studies Cognitive skills and language most important predictors of adaptive outcome It is possible that “typical” behaviour is reached It is more likely that continuing support is required The variation in outcome is greater than expected Outcome is not “one” concept, it is multifaceted Early years are the most difficult

27. Conclusions (I) De-institutionalized yes; better outcome? Yes Early intervention more widespread leads to better cognitive and language skills With better cognitive skills, the potential for better outcome increases So does the variability in outcome

28. Conclusions (II) Need to plan for a large increase in numbers of adolescents and young adults with dx of ASD, especially higher functioning ASD Need an integrated system of supports; case management, psychiatric, housing, recreational, vocational A range of needs to reflect a spectrum of disability and strengths

29. The Transition to Adulthood Medical, psychiatric and psycho-social needs Other studies show poor quality of psychopharmacology care (40% on multiple drugs) Focus on environment and quality of life not treatment of autistic symptoms/cognitive development When does thus paradigm shift occur?

30. Woodview Manor Residential supports for HF ASD Supported vocational training Have their own business Recreational activities Sense of identity, supportive relationships, respect for differences and interests

32. What Do I Tell Parents? Do not think ahead! Amount of variance explained by predictors is low But everyone gets better overall (with periodic ups and downs) Focus on quality of life, promoting strengths, not only treatment of “deficits” and “impairments”

34. Predictors of Outcome at 4-6 years Non-verbal cognitive skills (except for sub- group that have “inflated scores”) Language skills at 6-8 years not at 4 years; this explains diff between HFA and AS Poorer outcome on one measure does not mean poorer outcome on all measures

35. Differences AS and HFA; Co-morbidity of Challenging Behaviours and Psych. Illness Challenging behaviours are similar, stable over time and cause much family stress High prevalence/incidence of new co-morbid anxiety and mood disorders; Those most at risk are those with BETTER cognitive and language skills; AS>HFA