Older Adults and Autistic Spectrum Disorder Survey, Prof Stuart-Hamilton

Quick facts

  • The first wide-scale British survey of the impact of ASD on older adults, 2009.
  • Commissioned by the Welsh Assembly, the report was formally adopted 2010.
  • In the light of the report, Welsh Assembly policies on care of older adults and ASD were changed.
  • Informed and guided a Welsh Assembly awareness-raising campaign in 2010.
  • Identified previously unrealised depth of problems facing this group.
  • At the vanguard of increased international recognition of a hitherto underappreciated problem.

Summary

The Welsh Assembly, through Autism Cymru, commissioned Professor Stuart-Hamilton to conduct an online survey of the mental and physical health of older adults with Autistic Spectrum Disorder (ASD). In conjunction with this, a team at Bangor University conducted a series of case studies on individual adults, mainly from the same participant group. The study found a profound set of health problems and paucity of social contact among participants, with anxiety and anxiety-related conditions being a majority experience and significantly higher than in the general population. Although some participants were financially affluent, most were unemployed or earned significantly below-average pay. The Bangor section of the study supported this and, inter alia, noted the profound feeling of failure by the general public and medical personnel to understand the needs of people with ASD.

Why this research is important

Since the 1960s, awareness of ASD in children has grown, such that the probability of a British child being undiagnosed with the condition is now very low. This means that appropriate treatment and education can be given from an early age, hugely improving the prognosis for most children. However, the fate of children with ASD born before the sixties was largely unknown. A fair summation is that researchers and clinicians tacitly assumed these people existed, but relatively little study was made of them. Thus, previous research was sparse and tended to be of individual case studies. The current study, by demonstrating that there are severe problems facing a significant group of participants, illustrated for the first time that this was a deep-seated problem in the ASD community that applied to more than individual, isolated cases. An incidental finding of the study was that health authorities and medical personnel were typically unaware of the existence of ASD in older adults, illustrated by the miniscule percentage of all likely cases of adult ASD were known to the health authorities.

The findings thus question whether ASD research can continue being so strongly focused purely on a younger age range, and whether more help can be given to the majority of older adults with ASD who remain undiagnosed.

The study was a key factor in the Welsh Assembly changing its policies on both older people and ASD

It also informed an awareness-raising campaign directed at health care professionals, managers and staff of care homes, etc, informing them of the need to identify hitherto undiagnosed cases of ASD, and advising on methods of interacting with and caring for clients with ASD.

In the wake of the report and several others that appeared after, there has been a significant increase in reports and research on ASD in older adults.

A longer description of Professor Stuart-Hamilton’s section of the report can be found in:

Stuart-Hamilton, I. & Morgan, H. (2011) What happens to people with autism spectrum disorders in middle age and beyond? Report of a preliminary on-line study Advances in Mental Health and Intellectual Disabilities, 5, 22 – 28.