"Our Existence as Whole Individuals Does Not Evaporate at Age 50": A Mixed Methods Study of Autistic Adults' Perspectives on Growing Older.

Abstract

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.

Community brief: Why is this an important issue?: We know that social support and relationships contribute to better quality of life in older autistic adults. However, we do not know enough about the experiences of older autistic adults, what might help autistic people to do well in older age, and what worries autistic people about growing older.What was the purpose of this study?: To understand the experiences and support needs of autistic people as they age and identify priorities for future research about aging.What did the researchers do?: We worked with autistic individuals to create an online survey about growing older. The survey asked participants to rate (between 1 and 5) certain aspects of aging and asked participants "open-ended" questions, where participants could write what they wanted. Open questions asked what might help people to do well in older age, what might worry people about older age, and whether their experience of being autistic has changed as they have grown older. We also asked people what aging-related topics they think future research should look at. In total, 121 autistic people took part, aged 18-88. We looked for patterns across the responses where participants wrote similar or different things.What were the results of the study?: We found that participants had many concerns about "aging well." These included concerns about health and conditions such as dementia and menopause, the suitability and quality of care, and wider support and understanding from across society as well as closer relationships. Participants also worried about losing their independence and autonomy, having to move to unsuitable care homes, isolation, and a lack of support and social connectedness. Given this, we suggest that future research could focus on health and social 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.What do these findings add to what was already known?: Our findings confirm previous research about worries over losing independence and the need for health and care staff to be more aware of older autistic people's needs. Our findings highlight the underexplored areas of care home living and health conditions such as dementia.What are potential weaknesses in the study?: The study captures and reports the experiences of a small group of people compared with the wider autistic population, and these may not be relevant to everyone. Most participants were White British and had a degree, so views from the wider autistic population and particularly those with different backgrounds may not be reflected in this study.How will these findings help autistic adults now or in the future?: These findings help to validate the experiences, hopes, and fears of autistic individuals; provide evidence to help people advocate for their needs; and provide information for health and care professionals to help them provide care and support for older autistic adults. Important topics for future research are also suggested.