How do autistic adults experience ageing? A qualitative interview study

The aim of this study was to understand middle-aged and older autistic adults' views and experiences of ageing and their associated health and social care needs. Seventeen autistic adults (10 women and seven men) aged 46-72 years were recruited via convenience and snowball sampling strategies and interviewed via Zoom or telephone call about what it means to age well; their age-related needs; and how services could better support them to age well. Semi-structured interview transcripts were analysed using inductive thematic analysis. Five themes were identified. These reflected: (1) possibilities and fears around ageing; (2) adaptive strategies when facing age-related changes; (3) understanding and acceptance of autism for a more positive experience of ageing; (4) social relationships as important for supporting ageing and (5) formal support for ageing needing to be autism-informed. The findings highlight a need for increasing societal knowledge about ageing with autism, and for improved services to support this. We provide a set of recommendations for professionals working with autistic adults. These include involving autistic people in the design of health and social care services; ensuring that services are trauma-informed and strength-focused; and providing peer support to help autistic people navigate and access services.Lay abstractWhat was the purpose of this study?The purpose of this study was to understand middle-aged and older autistic adults' views and experiences of ageing well, their age-related needs, and how services could better support them to age well.Why is this an important issue?Very little research explains how autistic people experience ageing. It is important to know more about this to ensure that health and social services know how to best support ageing autistic people to live happier and healthier lives.What did the researchers do?We interviewed 17 middle-to-older autistic adults (10 females, 46-72 years) via Zoom or telephone. We typed up participant's responses and looked for common themes within the data.What were the results of the study?Participants felt that links between autism and ageing were poorly understood, and that autistic adults may have a higher risk of certain age-related conditions such as dementia. Participants also felt their autistic characteristics and experiences were changing with age.This study also revealed that current ageing support is generally felt to be incompatible with autistic adults' characteristics. This incompatibility was linked to professionals not understanding autistic characteristics, and services being difficult to access. A hub-based model was proposed involving flexible and responsive peer and specialist support options.How will these findings help autistic adults now or in the future?This study raises the profile of the needs of ageing autistic adults. We have created a set of recommendations that will contribute to professionals' understanding of autistic adults' views on ageing well, their age-related support needs, and how to adapt service provision accordingly.