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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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5

10

15

20

25

30

35

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

20

30

40

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