Autism Spectrum Disorder in Later Life
Submitting InstitutionUniversity of South Wales
Unit of AssessmentPsychology, Psychiatry and Neuroscience
Summary Impact TypeHealth
Research Subject Area(s)
Medical and Health Sciences: Clinical Sciences, Public Health and Health Services
Psychology and Cognitive Sciences: Psychology
Summary of the impact
Autism Spectrum Disorder (ASD) is a lifelong condition, but has almost
never been examined in
adults over the age of forty years. Following an earlier bid for funding
to examine this issue, Prof.
Stuart-Hamilton was commissioned by the Welsh Assembly Govt (WAG) via the
Cymru to conduct a quantitative survey of problems faced by older adults
with Autism Spectrum
Disorder (ASD). A companion qualitative survey, involving interviews with
a small sample, was
conducted by colleagues at Bangor University. A formal report (consisting
of Prof Stuart-Hamilton's
and Bangor's findings) and a refereed paper (solely of Stuart-Hamilton's
findings) have been
published, predating other studies in this field that have since begun to
appear in the UK and
internationally. The report was formally adopted by WAG, leading to a
publication campaign and presentation of the report as part of WAG's
ongoing strategy. Integration
of the report's recommendations into government policy is anticipated when
the ASD policy is
revised in early 2014.
The prime driver for this work was Professor Stuart-Hamilton's on-going
research and scholarly
publications on ageing and Autistic Spectrum Disorder, which came to the
attention of Autism
Relatively modest funding (£20k) precluded a demographically
representative sample. Instead, the
highest functioning people with ASD were targeted, with the reasoning that
if significant problems
were found in this group, then other, lower-functioning groups can
logically be expected to have
similar or greater problems. The study was thus from outset intended as
exploratory research to
test the need (or not) for further, more detailed studies.
Participants were recruited via advocacy and online discussion groups, to
participate in an online
survey, consisting of the `Asperger Quotient' test, EuroQOL, and further
biographical and health
measures. Participants formally diagnosed, plus those who believed they
had ASD, but were
awaiting formal diagnosis, were recruited. No payment was offered, thereby
symptomless claimants from fraudulently claiming money.
The results showed both the formally diagnosed and those awaiting
diagnosis had significantly
higher levels of depression and anxiety, plus assorted physical complaints
digestive disorders) than the general population. Both the diagnosed and
groups scored significantly above threshold on the Asperger Quotient test,
but the diagnosed
group had significantly higher scores than the awaiting diagnosis group.
This and further
significant differences on other measures always fell in this direction.
Employment was overall
significantly lower than the population mean, although there was a small
sub-group of participants
with very high incomes in high status jobs (e.g. GP, head teacher).
Although the risk of fraudulent
representation is always possible in anonymous online studies, the overall
pattern of results
concurs very well with what little is known about ASD in later life, and
would have required mass
collusion by the participants to produce the pattern of findings.
Furthermore, the results replicate the findings of the Bangor part of the
study, which interviewed
some of the Stuart-Hamilton study participants in detail. The study can
thus be accepted as an
accurate overview of the problems facing high-functioning older adults.
This indicates potentially
much graver problems for older adults with ASD who are not
high-functioning, and indicates a
possible causal path to explain the already-documented finding that people
with ASD are
significantly over-represented in the prison population.
The study thus highlights a need to identify older people with ASD, and
since ASD became a
popular diagnosis in the 1990s, the majority of children and teenagers
currently with the condition
have been identified. But relatively few (under 5%) of people over 40 with
ASD have a formal
diagnosis. This means that circa 1% of the older population has a
condition in need of treatment,
but who are unaware of this. The study points to an urgent need to
increase awareness amongst
professionals who regularly treat older adults (GPs, residential care
workers, etc) and to ensure
that national authorities are aware of the need to identify and treat
older people with ASD, and also
to recognise that ASD identified in young people will need lifelong follow
up. Finally, the study also
points to new and potentially fruitful areas of research.
References to the research
Stuart-Hamilton, I., Griffith, G., Totsika, V., Nash, S., Hastings, R.P.,
Felce, D & Kerr, M. (2009)
The circumstances and support needs of older people with Autism. Report
for the Welsh Assembly
Government. Cardiff: Welsh Assembly
Ian Stuart-Hamilton, Hugh Morgan, (2011) "What happens to people with
disorders in middle age and beyond? Report of a preliminary on-line
study", Advances in Mental
Health and Intellectual Disabilities, Vol. 5 Issue: 2, pp.22 - 28
Details of the impact
1) This was the first such research, which has since been followed by
significantly increased focus
elsewhere in Europe and the UK.
2) Led to a WAG publication on raising awareness of older people with
ASD, available online and
distributed to appropriate groups and individuals.
3) Led to a conference (incl. keynote address by Ian Stuart-Hamilton)
funded by WAG in 2010 to
discuss older adults and ASD. Inter alia, senior WAG officials and
ministers, and representatives of
18/22 of local authorities and all health boards attended.
4) The report is an integral part of the continuing WAG ASD policy.
5) Led to WAG adopting the report, pursuing further study and
consideration for inclusion in
strategy for care of older adults.
6) Formal adoption of the recommendations as WAG policy is expected, but
the WAG revision of
the same is not expected before early 2014. Hence, no evidence can be
provided at this time.
Sources to corroborate the impact
(1) The report's publication in 2009 predates other publications on this
topic. This is a simple
matter of record.
(2) The WAG publication referred to above may be found at:
(3) Details of the conference referred to above may be found at:
(4) The report is cited as part of the on-going strategy on the following
(5) Evidence for WAG adopting the report, pursuing further study, etc is