How do autistic adults experience ageing? A qualitative interview study

Abstract

BackgroundDespite increasing numbers of people aging with autism, little is known about the ageing experiences and support needs of middle-aged and older autistic adults. This is important, especially as autistic people have higher rates of health conditions, decreased functional independence, and experience greater difficulties in accessing relevant support, in comparison to their non-autistic counterparts. The aim of this study was therefore to understand middle-aged and older autistic adults’ views and experiences of ageing well.MethodSeventeen autistic adults (10 women and seven men), aged from 46 to 72 years (mean age=56 years) were interviewed about their understanding of what it means to age well; their age-related needs; and how services could better support them to age well. The transcribed interviews were analysed using inductive thematic analysis. ResultsThe findings revealed several ways that autism influenced people’s ability to age well. This included concerns about a perceived higher likelihood of age-related conditions such as dementia; age-related changes in the experiences of autistic characteristics; a lack of knowledge and understanding about autism and ageing; increased risks of social isolation and inadequate support system; and a lack of appropriate support services. ConclusionNovel recommendations for supporting autistic adults to age well were identified, including involving autistic people in the design of health and social care services, supporting ageing autistic adults with reablement; promoting their autonomy and individual strengths and introducing specialised advocate/coordinator roles or “one stop-shop hubs” that could help autistic people further their understanding of the interactions between ageing and autism.