Outcomes in Asperger syndrome

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Outcomes in Asperger syndrome

• Wrexham, March 15, 2005

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• 1. General outcome
• 2. Deterioration in adulthood?
• 3. Psychiatric problems?

• 4. Forensic problems?
• 5. How can we improve outcome?

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1. What do we know about outcome?

• Sources of data
• Personal accounts
• Lawson, Holliday Willey, Grandin, Gerland,
  Williams
• Clinical descriptions
• Systematic follow-up studies

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Follow-up studies from child-adulthood (age
16-30)

• 1950-1960s Anecdotal reports (Kanner
  Eisenberg, Creak)
• 1969-1990s More systematic studies (Rutter,
  Lotter Gillberg, Kobayashi Ballabin-Gill)
• 1980s on Focus on more able individuals
  (Rumsey, Szatmari, Lord Venter , Larsen,
  Mawhood, Tantam, Ballabin Gill, Howlin et al.)

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Outcome in studies published pre and post 1980
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Maudsley study- (Howlin, Goode, Hutton Rutter,
2004)

• Group characteristics
• N68 (61 male, 7 female)
• Age first seen 7 years
• Age now 29 yrs
• Diagnosis confirmed by ADI
• Initial PIQ 80 (51-137)

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Principal school placement
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Academic qualifications
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Residential status
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Friendships
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Employment status
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Overall level of independence
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Predictors of outcome?
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• High stability of IQ over time
• High correlations between child IQ and
  social/language abilities in adulthood

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However

• IQ Language not only predictive factors
• Some adults with initial IQgt100 functioning much
  less well than those of IQ of 70
• Rituals/stereotyped behaviours anxiety problems
  major impact on outcome for some

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Relationship between IQ ritualistic/stereotyped
behaviours
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2. Do people with Asperger syndrome deteriorate
in adulthood?
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Evidence of deterioration in adulthood

• Some follow-up studies indicate increases in
  problems over time
• hyperactivity, aggression, destructiveness,
  rituals, inertia, loss of language and slow
  intellectual decline
• However, most report that 30- gt40 of
  participants show marked improvements in late
  adolescence/early adulthood

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Many follow-up studies report

• Increases in verbal IQ
• Improvements in self awareness and self control
• Decreases in autistic symptomatology- social,
  communication and rituals/obsessions

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• Kanners own (1973) follow-up of 96 adults found
• Significant improvement often occurred in
  mid/late teens as individuals became more aware
  of their problems and endeavoured to improve
  themselves
• Special interests often important in finding work
  and developing crucial contacts

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3. Is there evidence of increased psychiatric
disturbance in adulthood?
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• Systematic follow-ups do not report increased
  rates of schizophrenia using DSM criteria
• Asperger, only 1 in 200 cases Volkmar Cohen,
  1/163
• General conclusion is that rate is around 0.6no
  higher than in general population
• Wing suggestions of increased risk
  distressing without being constructive

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Psychiatric diagnoses in case studies of
individuals with autism (N200)
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Affective psychosis

• Most common type of psychotic disorder
• Often become worse in late adolescence/early
  adulthood
• May have delusional content associated with
  autistic obsessions
• Non-psychotic anxiety,depressive disorders, and
  attempted suicide also common

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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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4. How common are 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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Is there an increased rate of crime among people
with autism/Asperger syndrome?

• 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

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Ghaziuddin et al., 1991

• Reviewed 132 reports of people with Asperger
  syndrome
• Only 3 had clear history of violent behaviour
• Conclude this much lower than the figure of 7
  who commit violent crimes in the 20-24 year age
  group in the 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
• Obsessionality

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Crucial to understand

• Factors leading to psychiatric and forensic
  problems in adults

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• Desire for contact, without understanding the
  rules leads to
• Misunderstanding of social cues
• Misunderstanding by others
• Actions viewed as aggressive/psychotic
• Vulnerability
• Teasing, bullying and misuse
• Lack of remorse resistance to changing
  behaviour

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Often related to obsessional interests/preoccupati
ons

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5. 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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Improve education

• Increase understanding of educators
• Support necessary
• to enhance positive social interactions
• to avoid negative ones
• Improve curriculum and aids for learning
• structure, visual cues (TEACCH),

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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
• Continuation of childhood behaviours that become
  unacceptable with age

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Establish rules from early on

• Remember
• What is clever, cute, charming at 3
  (Mannerisms,attachments,obsessions/routines,
  inappropriate topics of conversation, social
  disinhibition) can be a disaster at 30!

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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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• Improve opportunities for social inclusion
• Especially for work!

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Supported employment for people with AS. Jobs
found from 1995-2003(Total 203)
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Types of job
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6. Future needs
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Essential needs (1)

• Early diagnosis
• Management advice for parents (to avoid later
  problems reduce rituals establish acceptable
  social behaviours)
• Modification of special skills to promote social
  interactions/interests

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Essential needs (2)

• Appropriate education
• Recognition by social, health and employment
  services of needs of adults with autism
  (especially those who are more able)
• Variety of options for supported and
  semi/independent living

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Essential needs (3)

• Ways of improving social interactions (social
  skills groups befriending schemes)
• Help for (more able) individuals to understand
  and cope with the enigma that is autism