Outcome in Adults with Autism Spectrum Disorders

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Outcome in Adults with Autism Spectrum
Disorders

• Falling through the cracks
• Patricia Howlin, Institute of Psychiatry,
• Kings College London. July 2009

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Once thought to be a very rare disorder affecting
mainly individuals of low IQ

• Now known that ASDs occur in up to 1 of the
  population
• And 40-50 of people with ASD have IQ in normal
  range (Baird et al., 2006) and have relatively
  good language

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• Research has greatly increased out knowledge of
  autism in children (incidence, causes,
  interventions etc)
• But
• what do we know about adult outcome?

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Outcome improving (studies published pre-post
1980)
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But still a long way to go (NAO 2009)
Maudsley study- Howlin et al., 2004
N68 First seen _at_ 7 years FU _at_ 29 yrs
(diagnosis re-confirmed by ADI-R). Mean childhood
PIQ 80 (51-137)
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Adulthood brings about new challenges changes-
some positive, some negative

• Most follow-up studies report that 30- gt40 of
  participants show marked improvements in late
  adolescence/early adulthood
• Increases in verbal IQ
• Improvements in self awareness and self control
• Decreases in autism symptomatology- social,
  communication and rituals/obsessions
• But from lt10 to gt30 of subjects showing an
  increase in problems over time
• Especially loss of previous skills

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Reasons for onset of problems in later
adolescence/adulthood???

• 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)
• Note most favourable outcome study is of sample
  of adults in Salt Lake City!

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Also

• 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

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How can the situation be improved?
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Address factors leading to psychiatric and other
problems

• Lack of structure predictability
• Boredom ( gtroutines rituals)
• Low self esteem
• Isolation from peer group
• Continuation of childhood behaviours that become
  unacceptable with age
• What is clever, cute, charming at 3 can be a
  disaster at 30!

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Address fundamental deficits

• Social understanding
• Emotional awareness expression
• Abstract understanding/ imagination
• But how to do this effectively?

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Need for therapy for emotional and other
disorders in ASD ??

• Adolescence onwards Significantly higher rates
  of anxiety disorders in ASD than typically
  developing children or those with language
  disorders or conduct disorders.
• In individuals who do develop psychiatric
  disorders 25 have onset in teens 60 in early
  adulthood (Hutton et al. 2008)
• Small, but growing number of successful RCTs for
  anxiety, anger, social skills for people with ASD
  but results circumscribed
• Need to improve research and evaluate use of CBT
  in clinical practice
• Need Therapists who understand ASD
• Involvement of carers/parents as co-therapists
• Focus on improving social emotional understanding
• Is a focus on cognitions really appropriate for
  individuals with very pervasive cognitive
  impairments

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• Improve opportunities for social inclusion
• And especially opportunities for work!

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Outcome of supported employment scheme for adults
with ASD 1996-2003 (Howlin et al., 2005)
Total jobs203
Types of job
Other
Computing/ technical
Admin
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What will happen when parents are no longer
around?

• gt one third of 30 year olds still living with
  parents
• lt 20 in (un) supported residential accommodation

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Growing old

• ????

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Issues to be addressed

• Physical needs
• Mental needs
• Lack of employment
• Lack of money
• Loss of relatives
• Loss of peers

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New study

• 93 high functioning adults with autism (Normal IQ
  as children) seen previously at 7 yrs and 29 yrs.
  Now aged 30-60 yrs
• 130 siblings (normal IQ)

• Outcome?
• Cognitive
• Psychiatric
• Social
• Employment Marital family relationships
• Family needs
• Personal experiences
• Service implications

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Challenges for the future- 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?
• Create more ASD- friendly environments?

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How to achieve more effective joined up
services?
Need to focus on changing others understanding
behaviour, at least as much as trying to change
the person with ASD.
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Need to change our images of autism

• Need to develop programmes throughout the life
  span

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Care for children with autism has improved
immeasurably over the decades
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The same must be done for adults- especially
older adults
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Funding ...
Situation now
How it needs to be
?








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