1 Outcome in adults with autism and Asperger syndrome Affective neuroscience group Jan 2007 Patricia Howlin Professor of Clinical Child Psychology at the Institute of Psychiatry

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

3 WHAT DO WE KNOW ABOUT OUTCOME?

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 those with additional problems- eg epilepsy

5 Maudsley study- (Howlin, Goode, Hutton & Rutter, 2004)

6 DETERIORATION IN ADULTHOOD?

7 Follow-up studies indicate differing rates - from 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 However….. Most follow-up studies also report that 30- >40% of participants show marked 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 Environmental factors important Regression frequently coincides with: Increased stress ( entering university; employment) Lack of structure (eg when leave school) Disturbances in home/residential life (eg loss of parent; favourite staff)

11 MENTAL HEALTH PROBLEMS IN ADULTHOOD?

12 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

13 Other problems OCD Anorexia Sexual identity Paranoia Suicide

14 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

15 Forensic problems?

16 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

17 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 yr males in US)

18 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 Obsessional interests/preoccupations (eg young woman with fascination for babies in prams)

19 Social impairment also gives rise to: Vulnerability Teasing, bullying and misuse Being led into crimes by others without understanding People with autism/Asperger syndrome more likely to be VICTIMS of crime; not perpetrators Apparently motiveless behaviour (eg physical attack) may be due to unrecognised abuse by others 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

20 What will happen when parents are no longer around?

21 Residential status: Maudsley study

22 Growing old ????

23 HOW CAN THE SITUATION BE IMPROVED?

24 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

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

26 Address fundamental deficits: Understanding others minds Inability to understand others beliefs, feelings, thoughts or intended meaning leads to deficits in : Social understanding Empathy; ability to understand others point of view Ability to modify speech/behaviour according to context Comprehension Reciprocal communication Abstract understanding/ imagination

27 Various strategies available: Social skills groups; Social stories; Social scripts; Clear social rules; Developing self awareness But: Results tend to be situation specific Little generalization to other domains/situations Intervention programmes need to be conducted in as many settings as possible And from as early an age as possible (eg. Baron Cohen emotion videos?)

28 Need for CBT in ASD Significantly higher rates of anxiety disorders from adolescence onwards: Green et al., 2000 Significantly higher anxiety or obsessional problems than teenagers with conduct disorders Kim et al., 2001; 13 % of teenagers with ASD vs 3% of general population Gillott et al. (2001) Significantly higher anxiety scores in ASD than TD or language impaired groups

29 In adults: High levels of anxiety, delusional beliefs, social anxiety and self consciousness (Abell & Hare, 2005) Significant rates of anxiety and depressive problems (? in 30%; Volkmar, Tantam, Ghaziuddin, Szatmari)

30 Modifications to CBT needed because of: Communication deficits Literal understanding Repetitive language Discrepancy between verbal expression and comprehension Lack of awareness of impact of actions on self or others Motivation & cognitive deficits Problems in forming therapeutic relationship Difficulties of introspection & in expressing feelings (even of severe physical pain). Visual thinking style predominates Abnormal emotional responses; unusual ways of reporting anxiety or distress; difficulty modulating emotional responses (everything fine or disastrous) Rigidity of thought processes/beliefs (All or nothing thinking style) Poor generalization

31 Other approaches:

32 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

33 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

34 Creating an autism friendly environment Unconventional Controllable Predictable Consistent

35 Outcome of supported employment scheme for adults with ASD: No & types of job found, (Howlin et al., 2005) Computing/ technical Other Admin Total jobs=203

36 Improve recognition by social, health and employment services of needs of adults with autism (especially those who are more able) Improve options for supported and semi/independent living & removing pressure on parents Seek better ways of improving social interactions (social skills groups; befriending schemes) Provide for emotional needs especially of more able individuals