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 child-adulthood (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

0

10

20

30

40

50

60

%

Good/fairoutcome

In work In ownhome

In hospital

Pre 1980Post 1980

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

0

5

10

15

20

25

30

35

40

45

Type of school

Mainstream

LD

Autistic

Other (EBD, Steiner etc)

%

Academic qualifications

0

10

20

30

40

50

60

70

80

College/universityGCE's+Diploma/GCSE'sNone

%

Residential status

0

5

10

15

20

25

30

35

Type of placement

IndependentShelteredWith parentsAutistic residOther residHosp. Care

%

Friendships

0

10

20

30

40

50

60

Shared friendshipsAcquaintancesNo friends

%

Employment status

0

10

20

30

40

50

60

70

Type of job

IndependentVoluntaryShelteredNone

%

Overall level of independence

0

5

10

15

20

25

30

35

40

45

50

GoodModeratePoorVery poorHospital care

%

Predictors of outcome?

• High stability of IQ over time

• High correlations between child IQ and social/language abilities in adulthood

0

10

20

30

40

50

60

70

80

Non-verbal Verbal

Child IQAdult IQ

010

2030

405060

70

%Good/fair outcome

100+ 70-99 50-69

Initial PIQ level

Language

Social

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

0

10

20

30

40

50

60

% severe rituals

100+ 70-99 50-69

Initial IQ level

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 symptomatology- social, 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)

0

20

40

60

80

100

120

TOTAL DEPRESSIVE TYPE

Depression

Anxiety

Affective

Bipolar

Mania

Psychotic disorder, NOS

Schizophrenia

Catatonia

Other

N cases

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)

0

10

20

30

40

50

60

1996 1997 1998 1999 2000 2001 2002 2003

Jobs found per year

Types of job

70%

7%

13%

3%7%

Admin/computing/technicalSales support

Warehouse

Cleaning

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