'It's designed for someone who is not me': A reflexive thematic analysis of the unmet healthcare support needs in UK autistic adults aged 65 years and over.

Abstract

Lay abstract: Autistic people often face both physical and mental health challenges throughout their lives, which can lead to a higher risk of premature death due to health inequalities. However, we know very little about the healthcare experiences of autistic older adults. In this study, we talked with 19 autistic adults aged 65 years or above living in the United Kingdom. We found these main themes: (1) A lifetime of being misunderstood; (2) Autistic people falling between the gaps; (3) Processing autism diagnosis in later life; (4) Concerns about service pressures and scarce resources; (5) Lack of continuity of care, empathy and understanding; (6) Anxiety, alexithymia and sensory overload; and (7) Reduced social support and concerns for the future. Themes show that autistic older adults face unique healthcare access challenges because services don't consider their lifelong experiences of social exclusion. Participants also worried about age-related decline coupled with reduced social support, which makes it harder for them to get support. To address these challenges, healthcare services should provide more targeted support, make policies and funding consistent, and improve healthcare provision by providing staff training. Importantly, they must also speak with autistic older adults so they can advocate for their current and future care.