Adults with Autism Spectrum Disorders: Outcome and Interventions Prof. Patricia Howlin

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1 Adults with Autism Spectrum Disorders: Institute of Psychiatry King s College London 1 What do we know about outcome? 2 Outcome improving (studies published pre-post 198) 6 5 % 3 Pre 198 Post 198 In work In own home In hospital 3 The screen versions of these slides have full details of copyright and acknowledgements 1

2 Maudsley study (Howlin, Goode, Hutton & Rutter, 4) 35 3 Formal qualifications 25 In work/supported Some friends % Semi/independent living 15 5 N=68; First 7 years; 29 yrs (diagnosis re-confirmed by ADI-R); Mean childhood PIQ 8 (51-137) 4 Predictors of outcome High stability of IQ over time High correlations between child IQ and social/language abilities in adulthood Almost no-one with childhood IQ < 7 had a good social outcome Verbal Non-verbal Initial PIQ level %Good/fair outcome Child IQ Adult IQ Language Social 5 However IQ not the only predictive factor Some adults with initial IQ > functioning much less well than those of IQ of 7 Rituals/stereotyped behaviours & anxiety problems major impact on outcome for some % severe rituals Initial Q level 6 The screen versions of these slides have full details of copyright and acknowledgements 2

3 Adulthood brings about new challenges & changes Some positive Some negative 7 Most follow-up studies report that 3-% 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 8 But Follow-up studies indicate differing rates from <% to >3% of participants in these studies, showing an increase in problems over time Hyperactivity, aggression, destructiveness, rituals, inertia, loss of language and slow intellectual decline 9 The screen versions of these slides have full details of copyright and acknowledgements 3

4 Maudsley follow-up (Hutton et al., Autism, 8) 135 adults (> 21yrs) Diagnosed as ASD as children Childhood IQ % definite new disorder in adulthood ( +?6% new disorder) Maudsley follow-up (2) (Hutton et al., Autism, 8) 4 OCD + catatonia 8 affective disorder + marked obsessional features 3 complex affective disorder 4 typical affective disorders d 2 other: 1 acute anxiety/depression; 1 bipolar/hypomania, 6 uncertain mostly anxiety related No cases of schizophrenia No association with IQ - problems affected the high functioning and those with severe ld 11 Reasons for onset of problems in later adolescence/adulthood??? Regression frequently coincides with: Increased stress (entering university; employment) Lack of structure (e.g., g when leave school) Disturbances in home/residential life (e.g., loss of parent; favourite staff) Note: most favourable outcome study is of sample of adults in Salt Lake City! 12 The screen versions of these slides have full details of copyright and acknowledgements 4

5 Also: If problems do occur can be very difficult to resolve because of: Lack of awareness of Social impact Implications for self Rigidity of beliefs Obsessional interests/preoccupations 13 Obsessional & ritualistic tendencies 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 14 Or due to social impairments. Desire for contact, without understanding the rules leads to: Giving unwitting offence Intrusion into others space Other unacceptable behaviours 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 (e.g., physical attack) may be due to unrecognised abuse by others 15 The screen versions of these slides have full details of copyright and acknowledgements 5

6 How can the situation be improved? Develop existing skills to Encourage social contacts Increase social status & enhance self esteem Improve: Self help/self care Independence (travel, shopping etc.) Social niceties ; conversational abilities (introductions/compliments etc.) Oddness may be tolerated/forgiven if compensated for by other skills 16 Address factors leading to psychiatric and other problems Lack of structure & predictability Boredom ( > routines & rituals) Isolation from peer group Low self esteem Continuation of childhood behaviours that become unacceptable with age What is clever, cute, charming at 3 can be a disaster at 3! 17 Address fundamental deficits Social understanding Emotional awareness & expression Abstract understanding / imagination But how to do this effectively? 18 The screen versions of these slides have full details of copyright and acknowledgements 6

7 Various strategies available: Social skills groups; social stories; social scripts; clear social rules; developing self awareness But: Results often 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 19 Are we teaching sexually/culturally inappropriate behaviours? (e.g., greetings) Are we able really to teach more subtle forms of communication successfully (e.g. compliments)? Teaching female skills to young men that are not quite appropriate Need for therapy for emotional and other disorders in ASD?? Adolescence onwards: significantly higher rates of anxiety disorders Significantly higher anxiety or obsessional problems than teenagers with conduct disorders (Green et al., ) 13% of teenagers with ASD vs. 3% of general population show depressive symptoms/anxiety (Kim et al., 1) Significantly higher anxiety scores in ASD than typical or language impaired groups (Gillott et al., 1) In individuals who do develop psychiatric disorders ~ 25% have onset in teens (Hutton et al., in press) 21 The screen versions of these slides have full details of copyright and acknowledgements 7

8 Cognitive behaviour therapy: Small, but growing number of RCTs for anxiety, anger, social skills Sofronoff et al., (5) Brief CBT for anxiety in Asperger syndrome Sofronoff et al., (7) CBT for anger management in Asperger syndrome Chalfant et al., (7) Family based CBT for anxiety Beaumont et al., (8) Social skills Reliance on parental reports/analogue measures, Self reports show less change; No real life assessments; Also diagnostic and other methodological limitations 22 Factors affecting success of CBT Inherent defects in social communication and understanding lack of mentalizing ability Failure to understand own and others minds/thoughts 23 Modifications to CBT needed because of: Lack of awareness of impact of actions on self or others Motivation & cognitive deficits Problems in forming therapeutic relationship Communication deficits Stereotyped language; discrepancy between verbal expression and comprehension (misleading for therapist & patient) Difficulties of introspection & in expressing feelings (even of severe physical pain) Furious Angry Cross Irritated Calm Difficulty modulating emotional responses (everything fine or disastrous) Rigidity of thought processes/beliefs Poor generalization The anger thermometer 24 The screen versions of these slides have full details of copyright and acknowledgements 8

9 Phobias? or??? Mother asked for advice with what seemed to be a phobia Dogs must be carried 25 Implications: Need: therapists who understand ASD (impact of echolalia, literal interpretation) Concrete language Concrete-logical- rule based solutions Visual cues Short sessions Short term goals Involvement of carers/parents as co-therapists to increase generalization Focus on improving social emotional understanding 26 Still little evaluation Is a focus on cognitions really appropriate for individuals with very pervasive cognitive impairments Is CBT better than BT??? Improve opportunities for social inclusion And especially opportunities for work! 27 The screen versions of these slides have full details of copyright and acknowledgements 9

10 Barriers to work: Anxiety Uneven profile of skills Lack of self awareness inappropriate dress, self hygiene, social interactions Vulnerability / failure to understand deceit Literal interpretation Failure to recognise mild displays of annoyance, others dissatisfaction with work 28 Autism qualities: Attention to detail Honesty Keeps to rules Doesn t gossip Doesn t waste time Enjoys routine tasks that others dislike 29 Prospects: jobs found from (total = 3) A job scheme was designed to help high functioning individuals with autism to find work Jobs found per year The screen versions of these slides have full details of copyright and acknowledgements

11 Types of job 3% 7% 13% 7% 7% Admin/computing/technical Sales support Warehouse Cleaning Other 31 What will happen when parents are no longer around? > one third of 3 year olds still living with parents < % in (un) supported residential accommodation 32 Growing old???? 33 The screen versions of these slides have full details of copyright and acknowledgements 11

12 Issues to be addressed Physical needs Mental needs Lack of employment Lack of money Loss of relatives Loss of peers 34 Challenges for the future 35 How to: 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? Develop better ways of improving social interactions (social skills groups; befriending schemes)? Provide for emotional needs especially of more able individuals? 36 The screen versions of these slides have full details of copyright and acknowledgements 12

13 How to achieve more effective joined up services? Autism needs Physical needs Social needs Mental health needs 37 How to create a more ASD aware environment With better understanding of: Need for visual cues Need for clear feedback Verbal expression may give misleading impression of true level of comprehension Importance of routines & predictability Problems in making decisions (even very simple choices) Need to focus on changing others understanding & behaviour, at least as much as trying to change the person with ASD 38 Need to change our images of autism: Need to develop programmes throughout the life span 39 The screen versions of these slides have full details of copyright and acknowledgements 13

14 Care for children with autism has improved immeasurably over the decades The same must be done for adults - especially older adults 41 Funding Situation now How it needs to be 5? $$$$$ 5 3 $ $$ $$$$$ funding/yrs of life 3 $$$$$ $$$$$ $$$$$ funding/yrs of life The screen versions of these slides have full details of copyright and acknowledgements 14

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