Autism and Ageing

Autism is a lifelong condition yet research to date has focused almost exclusively on children and young adults, leaving a huge gap in our knowledge on what it means to age with autism. The little research that exists on autistic adults has shown that they are less likely to live independently or be employed than the general population, that they die earlier and are more at risk for suicide. This highlights the importance of finding out what aging well means for older autistic adults and what can be done to achieve it. Research with autistic older adults so far has measured quality of life with tools that were designed for and by the general population, which might not accurately reflect the autistic experience. In addition, participants with learning disabilities have been excluded from most studies, even though they represent around 30% of autistic people. Finally, contextual factors which might influence quality of life have been ignored.

Our work will address these limitations and provide new and urgently-needed knowledge on what it means to “age well” as an autistic adult. We will interview autistic adults (including those with learning disabilities) to understand their perspective on what it means to age successfully. We will then design a questionnaire to explore what it means to age well with autism in a larger sample of autistic older adults and their caregivers. This will allow us to identify factors that impact the life satisfaction of older autistic adults. Finally, we will analyse and compare national policy and the services available for autistic adults in the UK, Spain and Luxembourg and how these may be contributing to quality of life. This knowledge can be used as a basis to adapt and improve the support and services provided to autistic people in later life.