1 outcome in adults with autism and asperger syndrome affective neuroscience group jan 2007 patricia...
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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
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1. Outcome in adulthood
2. Evidence of deterioration in adulthood?
3. Forensic & psychiatric problems
4. How can we improve outcome?
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WHAT DO WE KNOW ABOUT OUTCOME?
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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
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Maudsley study- (Howlin, Goode, Hutton & Rutter, 2004)
0
5
10
15
20
25
30
35
% Of Group
Formal qualifications
In work/supported
Some friedns
Semi/independent living
%
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DETERIORATION IN ADULTHOOD?
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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”
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Deterioration most marked in individuals of lower verbal IQ those in long-stay hospitals and ? those with epilepsy
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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
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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)
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MENTAL HEALTH PROBLEMS IN ADULTHOOD?
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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
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Other problems
OCD Anorexia Sexual identity Paranoia Suicide
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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
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Forensic problems?
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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
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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)
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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)
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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
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What will happen when parents are no longer around?
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Residential status: Maudsley study
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10
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25
30
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Type of placement
IndependentShelteredWith parentsAutistic residOther residHosp. Care
%
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Growing old
????
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HOW CAN THE SITUATION BE IMPROVED?
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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
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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
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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 other’s point of view Ability to modify speech/behaviour according to
context Comprehension Reciprocal communication Abstract understanding/ imagination
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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?)
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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
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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)
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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
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Other approaches:
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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
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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
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Creating an autism friendly environment
UnconventionalControllablePredictableConsistent
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Outcome of supported employment scheme for adults with ASD: No & types of job found, 1996-2003 (Howlin et al., 2005)
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10
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50
60
1996
2003
23%
20% 57%
Computing/ technical
Other
Admin
Total jobs=203
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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