“Our Existence as Whole Individuals Does Not Evaporate at Age 50”: A Mixed Methods Study of Autistic Adults’ Perspectives on Growing Older

Background: Older autistic adults are at risk of social isolation and are more likely to experience physical and mental health conditions compared with non-autistic older adults. However, the needs and experiences of older autistic adults, and the perspectives of autistic adults (across ages) about growing older, are an under-researched area.
Methods: We conducted a mixed methods online survey to explore factors that may help autistic people to do well in older age, what worries people about older age, changes in experiences of being autistic with age, and priorities for future research. We recruited 121 autistic adults aged 18–88 from the United Kingdom, mainly via social media. We employed quantitative and qualitative data analysis methods.
Results: We generated three categories from participants’ free-text responses: (1) health, care, and wider societal support; (2) independence and autonomy; and (3) social connectedness. Qualitative findings supported the quantitative findings that maintaining physical and mental health, independence and autonomy, and social relationships were considered important. Participants worried about a lack of appropriate support from health and care staff, age-related health conditions such as dementia and menopause, and not having intersectional needs understood or met. Some participants reported their experience of being autistic became easier with age, and others found it more difficult. Participants suggested future research could include health and care staff and services (including care homes), health conditions (e.g., dementia), autistic-specific needs and concerns (e.g., changes in sensory sensitivities with age), social life and support, and independent living.
Conclusions: This study highlights supportive factors and concerns in relation to autistic aging. Our findings support recent research and highlight underexplored areas such as care home experiences, dementia, menopause, and LGBTQIA+ aging needs. Findings will help to inform health and care provision as well as directing future research in line with the priorities of the autistic community.