Outcome in adults with autism and Asperger syndrome

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Outcome in adults with autism and Asperger
syndrome
Patricia Howlin Professor of Clinical Child
Psychology at the Institute of Psychiatry

• Affective neuroscience group
• Jan 2007

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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 (lt50)
• 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)
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DETERIORATION IN ADULTHOOD?
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• Follow-up studies indicate differing rates - from
  lt10 to gt30 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- gt40
  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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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 ( gtroutines 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 others 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

• Unconventional
• Controllable
• Predictable
• Consistent

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Outcome of supported employment scheme for adults
with ASD No types of job found, 1996-2003
(Howlin et al., 2005)
Other
Computing/ technical
Admin
Total jobs203
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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