Improving the future for
adults with autism
Wales 2nd International Autism
Conference
May 2006
• 1. Outcome in
adulthood
• 2 Evidence of
deterioration in
adulthood?
• 3. Psychiatric
problems
• 4. Forensic
problems
• 5. How can we
improve outcome
1. Trends in Outcome:
-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
Findings generally very
variable but:
• Outcome poorest in
–
–
–
–
–
individuals of lower IQ (<50)
no useful language by 5-6 years
greater no. of symptoms in childhood
females
those with epilepsy
Maudsley study- (Howlin, Goode,
Hutton & Rutter, 2004)
• Group characteristics
–
–
–
–
–
N=68 (61 male, 7 female)
Age first seen 7 years
Age now 29 yrs
Initial PIQ 80 (51-137)
Diagnosis confirmed by ADI
• All cases had non-verbal IQ of 50+ in
childhood
General outcome
%
35
30
Formal qualifications
In work/supported
Some friedns
Semi/independent living
25
20
15
10
5
0
% Of Group
2. Deterioration in adulthood?
• Follow-up studies indicate differing rates from <10% to >30% of subjects showing an
increase in problems over time
– hyperactivity, aggression,
destructiveness, rituals, inertia, loss of
language and “slow intellectual decline
• Deterioration most marked in
– individuals of lower verbal IQ
– those in long-stay hospitals
– and ? those with epilepsy
Most follow-up studies note that
30- >40% show significant 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
Factors related to outcome
• IQ >70 and language by 5-6 years
main predictors
– High stability of IQ from child-to
adulthood (though verbal IQ may
increase over time)
– Childhood IQ significantly related to
many but not all adult outcome measures
• 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
IQ not the only predictive factor:
• 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
% severe
rituals
60
50
40
30
20
10
0
100+
70-99
Initial Q level
50-69
Implications:
• Need for focus on
– Appropriate education in childhood
– Early intervention to enhance
communication skills
– Intervention to minimise effects of
ritualistic type behaviours, and hence
anxiet resulting from these.
3. Mental health problems in
adulthood
Psychiatric diagnoses in case studies
of individuals with autism (N=200)
N cases
120
100
80
60
40
20
0
er
th
O
e
hr
op
s
di
r
de
or
a
ni
to
ta
a
Ca
ni
z
hi
tic
ho
yc
Sc
Ps
e
tiv
r
la
po
ia
an
M
Bi
c
fe
Af
S
O
,N
y
et
xi
An
PE
TY
on
si
VE
es
SI
pr
ES
De
PR
DE
L
TA
TO
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
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 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
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)
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
• 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
• May be due to desire for friendship
• May be mistaken interpretation of cues
Desire for contact, without
understanding the rules (often coupled
with obsessional interests)
Leads to:
• Lack of remorse & resistance to changing
behaviour
• Misunderstanding by others
– Actions viewed as socially inappropriate/
aggressive/psychotic
• Vulnerability
– Teasing, bullying and misuse
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!
London based supported
employment scheme
• Clients: High functioning autism/Asperger
syndrome actively seeking work
– IQ: 60-139
– Expressive Language age: 7-18+ years
– Receptive language age: 5-19+ years
– Male: female ratio: 7:2
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
Jobs found 1995-2003: 203
•
•
•
•
•
•
•
Film processing
Clerical/office
IT/computing
Admin
Finance/accounts
Sales/telephone
Warehouse/machine/
postal work
• Other: secretary,
BBC,consultancy,
nursery work, govt.
scientist, lab work,
housekeeping.
• 59% permanent
contracts
Types of employer
7%
11%
51%
31%
Large companies
Gov& public sector
Charities
Small/medium firms
Employers involved
Kodak
Royal mail
BT
M& S; Boots
Manpower; Remploy
National Autistic Society
London Boroughs
Rank Xerox
Sainsbury/Budgens/ASDA/Tesco
Whitbread
Metropolitan Police
BBC
Benefits agency
Depts of Environment/Energy/
Health.
Major banks
Major hospitals
Passport office; Foreign Office;
Treasury; DEFRA
Science museum
Virgin/ Great Western trains
British Airways
Support costs
Average of 50 hours a month support needed
in first month -only 5 hours per month by
4th month.
Steady decline in yearly cost of job finding
and support
(US figures estimate nil costs to exchequer
in 5th to 7th year)
Support savings- individuals in
work (2000-2003)
• Median reduction in benefits £1970 per
client (£0-£9030)
• Median increase in salary £8843 per
client (£0-£24980)
– (Median salary £0 initially, £9281 at
follow up)
Satisfaction with scheme
• 99% of senior managers “Very/ satisfied”
with support offered
• Clients themselves “very/satisfied” with
– help offered (98%)
– job/pay/hours (85%)
– relationship with colleagues (88%..though few
outside friendships)
Problems
41% of jobs – no problems; 59% some
problem
Social unawareness (invasion of privacy/talking
too much etc) especially of “unwritten” rules
Personal appearance/hygiene
Time keeping/productivity
Difficulty coping with change
Stress
Few problems coping with job itself
Problems generally occurred around social
interactions but were usually minor and
relatively easy to solve
Finding the right job the most time consuming
& expensive part of the scheme
Job success
Only 2 individuals have been dismissed whilst
supported by the scheme, despite most
experiencing many failures in the past
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