Autistic Ageing

Despite autism being a lifelong neurodevelopmental condition, 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 limited existing research on autistic adults paints a bleak picture, with individuals on the spectrum on average experiencing poor outcomes overall, reduced longevity and higher prevalence of suicide. Therefore, there is an urgent need for research into quality of life for this population. The few existing studies with people aged 50+ have significant limitations such as using “normative” criteria to measure quality of life, excluding participants with learning disabilities (who represent 30% of the autistic population), and ignoring contextual factors. Our study will address these limitations and provide new and urgently-needed knowledge on what it means to “age well” as an autistic adult. We will develop a conceptual framework of “successful ageing” in autistic populations by interviewing autistic adults (including those with learning disabilities) and their caregivers. Based on the results, we will develop a questionnaire (self- and proxy-report) to be applied in a larger sample of autistic older adults. Finally, we will adopt a socio-ecological perspective and conduct an in-depth analysis and comparison of national policy and the services available to older autistic adults in the UK, Spain and Luxembourg. Our work will, for the first time, clearly define what it means to age well as an autistic adult, identify factors which influence QoL and frame these in the wider context of national policy and services. The project will thus make a valuable contribution to both autism research and the autistic community, supporting them to “age successfully”.