1. Outcomes in Asperger syndrome Wrexham, March 15, 2005

2. 1. General outcome 2. Deterioration in adulthood? 3. Psychiatric problems? 4. Forensic problems? 5. How can we improve outcome?

3. 1. What do we know about outcome? Sources of data Personal accounts –Lawson, Holliday Willey, Grandin, Gerland, Williams Clinical descriptions Systematic follow-up studies

4. Follow-up studies from child- adulthood (age 16-30+) 1950-1960’s: Anecdotal reports (Kanner; Eisenberg, Creak) 1969-1990’s: More systematic studies (Rutter, Lotter; Gillberg, Kobayashi; Ballabin-Gill) 1980’s on: Focus on more able individuals (Rumsey, Szatmari, Lord &Venter, Larsen, Mawhood, Tantam, Ballabin Gill, Howlin et al.)

5. Outcome in studies published pre and post 1980

6. Maudsley study- (Howlin, Goode, Hutton & Rutter, 2004) Group characteristics –N=68 (61 male, 7 female) –Age first seen 7 years –Age now 29 yrs –Diagnosis confirmed by ADI –Initial PIQ 80 (51-137)

7. Principal school placement

8. Academic qualifications

9. Residential status

10. Friendships

11. Employment status

12. Overall level of independence

13. Predictors of outcome?

14. High stability of IQ over time High correlations between child IQ and social/language abilities in adulthood

15. However: IQ & Language not only predictive factors: Some adults with initial IQ>100 functioning much less well than those of IQ of 70 Rituals/stereotyped behaviours & anxiety problems major impact on outcome for some

16. Relationship between IQ & ritualistic/stereotyped behaviours

17. 2. Do people with Asperger syndrome deteriorate in adulthood?

18. Evidence of deterioration in adulthood Some follow-up studies indicate increases in problems over time –hyperactivity, aggression, destructiveness, rituals, inertia, loss of language and “slow intellectual decline However, most report that 30- >40% of participants show marked improvements in late adolescence/early adulthood

19. Many follow-up studies report: Increases in verbal IQ Improvements in self awareness and self control Decreases in autistic symptomatology- social, communication and rituals/obsessions

20. Kanner’s own (1973) follow-up of 96 adults found – Significant improvement often occurred in mid/late teens as individuals became more aware of their problems and endeavoured to improve themselves –Special interests often important in finding work and developing crucial contacts

21. 3. Is there evidence of increased psychiatric disturbance in adulthood?

22. Systematic follow-ups do not report increased rates of schizophrenia using DSM criteria –Asperger, only 1 in 200 cases; Volkmar & Cohen, 1/163 General conclusion is that rate is around 0.6%…no higher than in general population Wing = suggestions of increased risk “distressing without being constructive”

23. Psychiatric diagnoses in case studies of individuals with autism (N=200)

24. Affective psychosis Most common type of psychotic disorder Often become worse in late adolescence/early adulthood May have delusional content associated with autistic obsessions Non-psychotic anxiety,depressive disorders, and attempted suicide also common

25. Incorrect diagnoses occur because : Many adult psychiatrists know little about developmental disorders (or mental retardation) Misinterpret symptoms due to patients’ –inappropriate emotional responses –inappropriate verbal responses –unusual ways of describing symptoms Leading to incorrect conclusions and treatment

26. 4. How common are forensic problems?

27. Examples of behaviours leading to problems with police Fascination with –poisons & chemicals guns; certain types of clothing; washing machines; trains; cars Fire setting (or fire engines) Particular dislikes (babies; noise) “Sexual offences” - tend to be associated with obsessions or lack of social understanding. Very occasionally, cases of apparently unexplained violence

28. Is there an increased rate of crime among people with autism/Asperger syndrome? Incorrect to base conclusions about incidence either on –Single cases –Atypical samples (e.g. Special hospital population) –Anecdotal accounts/newspaper reports with no confirmed diagnosis

29. Ghaziuddin et al., 1991 Reviewed 132 reports of people with Asperger syndrome Only 3 had clear history of violent behaviour Conclude this much lower than the figure of 7% who commit violent crimes in the 20-24 year age group in the US.

30. However If problems do occur can be very difficult to resolve because of Lack of awareness of –social impact –implications for self –potential for harm Rigidity of beliefs Obsessionality

31. Crucial to understand Factors leading to psychiatric and forensic problems in adults

32. Desire for contact, without understanding the rules leads to: Misunderstanding of social cues Misunderstanding by others –Actions viewed as aggressive/psychotic Vulnerability –Teasing, bullying and misuse Lack of remorse & resistance to changing behaviour

33. Often related to obsessional interests/preoccupations

34. 5. How can the situation be improved?

35. Reduce factors likely to cause problems in adulthood Indications from some research (eg Lord & Venter, 1992) that extrinsic factors - ie support networks- may be just as important as individual variables

36. Improve education Increase understanding of educators Support necessary –to enhance positive social interactions –& to avoid negative ones Improve curriculum and aids for learning –structure, visual cues (TEACCH),

37. Address factors leading to psychiatric and forensic problems Lack of structure & predictability Boredom ( >routines & rituals) Low self esteem Isolation from peer group Continuation of childhood behaviours that become unacceptable with age

38. Establish rules from early on Remember: –What is clever, cute, charming at 3 (Mannerisms,attachments,obsessions /routines, inappropriate topics of conversation, social disinhibition) can be a disaster at 30!

39. Make use of existing skills to Encourage social contacts Increase social status Enhance self esteem Oddness may be tolerated/forgiven if compensated for by other skills

40. Creating an autism friendly environment Autism aware: –necessity of visual cues –disparity between verbal expression and comprehension –importance of routines –limitations of choice; decision making

41. Creating an autism friendly environment Unconventional Controllable Predictable Consistent

42. Improve opportunities for social inclusion Especially for work!

43. Supported employment for people with AS. Jobs found from 1995-2003 (Total =203)

44. Types of job

45. 6. Future needs

46. Essential needs (1): Early diagnosis Management advice for parents (to avoid later problems; reduce rituals; establish acceptable social behaviours) Modification of special skills to promote social interactions/interests

47. Essential needs (2): Appropriate education Recognition by social, health and employment services of needs of adults with autism (especially those who are more able) Variety of options for supported and semi/independent living

48. Essential needs (3): Ways of improving social interactions (social skills groups; befriending schemes) Help for (more able) individuals to understand and cope with the “enigma” that is autism