Transcript The outcome for adults with autism

Outcomes in Asperger
syndrome
Wrexham, March 15, 2005
• 1. General outcome
• 2. Deterioration in
adulthood?
• 3. Psychiatric
problems?
• 4. Forensic
problems?
• 5. How can we
improve outcome?
1. What do we know about
outcome?
• Sources of data
• Personal accounts
– Lawson, Holliday Willey, Grandin,
Gerland, Williams
• Clinical descriptions
• Systematic follow-up studies
Follow-up studies from childadulthood (age 16-30+)
• 1950-1960’s: Anecdotal reports (Kanner;
Eisenberg, Creak)
• 1969-1990’s: More systematic studies (Rutter,
Lotter; Gillberg, Kobayashi; Ballabin-Gill)
• 1980’s on: Focus on more able individuals
(Rumsey, Szatmari, Lord &Venter , Larsen,
Mawhood, Tantam, Ballabin Gill, Howlin et al.)
Outcome in studies published
pre and post 1980
60
%
50
40
30
Pre 1980
Post 1980
20
10
0
Good/fair
outcome
In work
In own
home
In hospital
Maudsley study- (Howlin, Goode,
Hutton & Rutter, 2004)
• Group characteristics
–
–
–
–
N=68 (61 male, 7 female)
Age first seen 7 years
Age now 29 yrs
Diagnosis confirmed by ADI
– Initial PIQ 80 (51-137)
Principal school placement
%
45
40
35
30
25
20
15
10
5
0
Mainstream
LD
Autistic
Other (EBD, Steiner etc)
Type of school
Academic qualifications
%
80
70
60
50
40
30
20
10
0
College/university
GCE's+
Diploma/GCSE's
None
Residential status
% 35
30
25
Independent
Sheltered
With parents
Autistic resid
Other resid
Hosp. Care
20
15
10
5
0
Type of placement
Friendships
%
60
50
40
30
20
10
0
Shared friendships
Acquaintances
No friends
Employment status
%
70
60
50
Independent
Voluntary
Sheltered
None
40
30
20
10
0
Type of job
Overall level of independence
%
50
45
40
35
30
25
20
15
10
5
0
Good
Moderate
Poor
Very poor
Hospital care
Predictors of outcome?
• High stability of IQ
over time
80
70
60
50
Child IQ
Adult IQ
40
30
20
• High correlations
between child IQ and
social/language
abilities in adulthood
10
0
Non-verbal
Verbal
70
60
50
40
30
20
10
0
Language
Social
100+
70-99
50-69
Initial PIQ level
%Good/fair outcome
However:
• IQ & Language not only predictive factors:
• Some adults with initial IQ>100 functioning
much less well than those of IQ of 70
• Rituals/stereotyped behaviours & anxiety
problems major impact on outcome for
some
Relationship between IQ &
ritualistic/stereotyped behaviours
% severe
rituals
60
50
40
30
20
10
0
100+
70-99
Initial IQ level
50-69
2. Do people with Asperger
syndrome deteriorate in
adulthood?
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- >40% of
participants show marked improvements in
late adolescence/early adulthood
Many follow-up studies report:
• Increases in verbal IQ
• Improvements in self awareness and self
control
• Decreases in autistic symptomatologysocial, communication and
rituals/obsessions
• Kanner’s 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
3. Is there evidence of increased
psychiatric disturbance in
adulthood?
• 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
0.6%…no higher than in general population
• Wing = suggestions of increased risk “distressing
without being constructive”
Psychiatric diagnoses in case studies
of individuals with autism (N=200)
N cases
120
100
80
60
40
20
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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
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
4. How common are forensic
problems?
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
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
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.
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
Crucial to understand
• Factors leading to psychiatric and
forensic problems in adults
• 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
• Often related to obsessional
interests/preoccupations
5. How can the situation be
improved?
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
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),
Address factors leading to
psychiatric and forensic problems
•
•
•
•
•
Lack of structure & predictability
Boredom ( >routines & rituals)
Low self esteem
Isolation from peer group
Continuation of childhood behaviours that
become unacceptable with age
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!
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
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
Creating an autism friendly
environment
• Unconventional
• Controllable
• Predictable
• Consistent
• Improve opportunities for social
inclusion
• Especially for work!
Supported employment for people with AS.
Jobs found from 1995-2003
(Total =203)
60
50
40
30
Jobs found per year
20
10
0
1996 1997 1998 1999 2000 2001 2002 2003
Types of job
7%
3%
Admin/computing/
technical
Sales support
13%
Warehouse
7%
Cleaning
70%
Other
6. Future needs
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
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
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