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Improving the future for adults with autism

Improving the future for adults with autism. Wales 2nd International Autism Conference May 2006. 1. Outcome in adulthood 2 Evidence of deterioration in adulthood? 3. Psychiatric problems. 4. Forensic problems 5. How can we improve outcome. 1. Trends in Outcome:

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Improving the future for adults with autism

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  1. Improving the future for adults with autism Wales 2nd International Autism Conference May 2006

  2. 1. Outcome in adulthood 2 Evidence of deterioration in adulthood? 3. Psychiatric problems 4. Forensic problems 5. How can we improve outcome

  3. 1. Trends in Outcome: -studies published pre and post 1980

  4. Findings generally very variable but: • Outcome poorest in • individuals of lower IQ (<50) • no useful language by 5-6 years • greater no. of symptoms in childhood • females • those with epilepsy

  5. Maudsley study-(Howlin, Goode, Hutton & Rutter, 2004) • Group characteristics • N=68 (61 male, 7 female) • Age first seen 7 years • Age now 29 yrs • Initial PIQ 80 (51-137) • Diagnosis confirmed by ADI • All cases had non-verbal IQ of 50+ in childhood

  6. General outcome

  7. 2. Deterioration in adulthood? • Follow-up studies indicate differing rates - from <10% to >30% of subjects showing an increase in problems over time • hyperactivity, aggression, destructiveness, rituals, inertia, loss of language and “slow intellectual decline

  8. Deterioration most marked in • individuals of lower verbal IQ • those in long-stay hospitals • and ? those with epilepsy

  9. Most follow-up studies note that 30- >40% show significant improvements in late adolescence/early adulthood Over time: • Increases in verbal IQ • Improvements in self awareness and self control • Decreases in ADI symptomatology- social, communication and rituals/obsessions

  10. Factors related to outcome • IQ >70 and language by 5-6 years main predictors • High stability of IQ from child-to adulthood (though verbal IQ may increase over time) • Childhood IQ significantly related to many but not all adult outcome measures

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

  12. IQ not the only predictive factor: • 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

  13. Implications: • Need for focus on • Appropriate education in childhood • Early intervention to enhance communication skills • Intervention to minimise effects of ritualistic type behaviours, and hence anxiet resulting from these.

  14. 3. Mental health problems in adulthood

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

  16. Summary: • No evidence of increased rates of schizophrenia • Affective illness most common type of problem • Often become worse in late adolescence/early adulthood • May have delusional content associated with autistic obsessions • Obsessional compulsive disorders may be difficult to distinguish from autistic-type rituals

  17. 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

  18. 4 Forensic problems

  19. 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

  20. 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 • Review by Ghaziuddin et al: rates much lower than average (violent crime rate =7% of 20-24 yr males in US)

  21. 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

  22. Adult problems often related to childhood preoccupations/routines • Need to ensure that behaviours that are acceptable for a small child do not persist into adulthood • May be due to desire for friendship • May be mistaken interpretation of cues

  23. Desire for contact, without understanding the rules (often coupled with obsessional interests) Leads to: • Lack of remorse & resistance to changing behaviour • Misunderstanding by others • Actions viewed as socially inappropriate/ aggressive/psychotic • Vulnerability • Teasing, bullying and misuse

  24. 5. How can the situation be improved?

  25. 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

  26. 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),

  27. 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

  28. 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!

  29. 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

  30. 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

  31. Creating an autism friendly environment • Unconventional • Controllable • Predictable • Consistent

  32. Improve opportunities for social inclusion • Especially for work!

  33. London based supported employment scheme • Clients: High functioning autism/Asperger syndrome actively seeking work • IQ: 60-139 • Expressive Language age: 7-18+ years • Receptive language age: 5-19+ years • Male: female ratio: 7:2

  34. Jobs found from 1995-2003(Total =203)

  35. Types of job

  36. Film processing Clerical/office IT/computing Admin Finance/accounts Sales/telephone Warehouse/machine/ postal work Other: secretary, BBC,consultancy, nursery work, govt. scientist, lab work, housekeeping. 59% permanent contracts Jobs found 1995-2003: 203

  37. Types of employer

  38. Kodak Royal mail BT M& S; Boots Manpower; Remploy National Autistic Society London Boroughs Rank Xerox Sainsbury/Budgens/ASDA/Tesco Whitbread Metropolitan Police BBC Benefits agency Depts of Environment/Energy/ Health. Major banks Major hospitals Passport office; Foreign Office; Treasury; DEFRA Science museum Virgin/ Great Western trains British Airways Employers involved

  39. Support costs Average of 50 hours a month support needed in first month -only 5 hours per month by 4th month. Steady decline in yearly cost of job finding and support (US figures estimate nil costs to exchequer in 5th to 7th year)

  40. Support savings- individuals in work (2000-2003) • Median reduction in benefits £1970 per client (£0-£9030) • Median increase in salary £8843 per client (£0-£24980) • (Median salary £0 initially, £9281 at follow up)

  41. Satisfaction with scheme • 99% of senior managers “Very/ satisfied” with support offered • Clients themselves “very/satisfied” with • help offered (98%) • job/pay/hours (85%) • relationship with colleagues (88%..though few outside friendships)

  42. Problems 41% of jobs – no problems; 59% some problem Social unawareness (invasion of privacy/talking too much etc) especially of “unwritten” rules Personal appearance/hygiene Time keeping/productivity Difficulty coping with change Stress Few problems coping with job itself

  43. Problems generally occurred around social interactions but were usually minor and relatively easy to solve Finding the right job the most time consuming & expensive part of the scheme

  44. Job success Only 2 individuals have been dismissed whilst supported by the scheme, despite most experiencing many failures in the past

  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

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