Autism and aging in middle-aged and older adults: An analysis of ‘Autistic adults experiences of aging’ (Aitken et al., 2024)
Hey all! We’re back this week to break down a qualitative interview study by Aitken and colleagues that aims to understand the experiences of middle-aged and older autistic adults in aging.
Aitken et al. (2024) notes that there is an increasing number of older adults being diagnosed with autism, though little is known about the experiences of aging and the support needs of middle-aged and older autistic adults. Autistic individuals might need support for managing daily tasks and for engaging in employment, healthcare, and social relationships. However, research has lacked understanding of the experiences and needs of middle to older aged autistic adults. As a result, Aitken et al. (2024) aimed to gain more of an understanding into middle-aged and older autistic adults by studying their perceptions of “aging well,” as well as the kind of support that could best help them with aging well.
Past literature on models of “successful aging” note several important aspects which include maintaining functioning, physical health, and social engagement. However, an aspect of aging that has been overlooked are the experiences of autistic adults, specifically middle-aged adults and older. Aitken et al. (2024) notes how the experiences of older autistic adults will likely differ from their non-autistic counterparts. For example, in a survey among 40–79-year-olds, it was found that only 3.3% of middle to old age autistic adults met criteria for “aging well” (as opposed to their non-autistic counterparts at 15%) (Hwang, Foley, & Trollor, 2020) . To this end, older autistic adults were found to be significantly less likely to maintain physical and cognitive functioning. Furthermore, autistic adults were also found to experience significantly higher mental and physical health related conditions. Aitken et al. (2024) additionally highlights the challenges that autistic adults experience in accessing appropriate services. Aitken et al. (2024) highlighted Adbi et al. (2019)’s findings that within the general aging population, accessing appropriate support can be difficult and made worse by communication challenges, limited understanding of available support, and/or a lack of helpful advice. For autistic adults, these challenges are likely to be intensified, as neurodivergent peers may experience reduced flexibility, increased likelihood of co-occurring physical and mental health conditions, as well as sensory and communication differences.
Briefly going over participant demographics, all participants required a diagnosis of autism and had to be at least 45 years or older to participate. It is important to note though that the sample was from the United Kingdom, affiliated with the University of Manchester. A key limitation to the study is that participants were “generally highly educated, white British, living independently, and interested in research.” It is important to note this limitation as these findings might not explain the experiences of autistic adults from more diverse backgrounds, though it offers important insight into the experiences of autistic adults in aging (which is an area in literature that is severely lacking) and a starting point for future research. The study was conducted as a semi-structured interview that covered topics related to participants’ views of what it means to age well, current support that helps participants age well, and how support services could be improved upon to make it easier to age well, however, it is important to note that autistic adults were not part of the research team! Summarized findings are below.
Summarized findings—
Health and overall functioning
Participants shared views about the interactions between age, autism, and physical health and functioning. Overall, there was a consensus that autistic adults can age well. Two themes emerged: one highlighting health fears that being autistic might exacerbate the aging process; and the second questioning the level of activity necessary to maintain functioning throughout aging.
Age-related changes
Participants shared about how being autistic might impact their ability to navigate age-related changes as well as changes in perspective and life transitions. There was a theme that being autistic was “ever present,” with some individuals dealing with more autistic-related challenges as they aged. Another theme that arose among participants was that it would be much easier if everybody was autistic. Building off of this, participants discussed masking as a coping mechanism, though noting that masking is more challenging as they age because of “increased burnout and reduced energy.” Moreover, there was a common feeling with aging that there would be an increased likelihood of burnout and an over-reliance on maladaptive coping strategies (such as alcohol use and dependency). One positive theme shared among participants was how certain autistic traits support their ability to manage life transitions associated with aging.
3. Knowledge and attitudes
Participants also discussed the importance of education and understanding on autism and aging. Several common themes arose including understanding and accepting aging and autism and the need for future research and training. Participants expressed a need for autistic adults to understand what it will be like to age, as this would help to make aging easier. Many participants, particularly those who were older, shared a lack of autistic role models (that is, they did not have an autistic adult to look to for guidance in their journey of aging). Participants also discussed how they felt that receiving a diagnosis earlier in life would have led to an easier aging journey. There was also a common theme among participants of being misunderstood by various health professionals. Overall, participants highlighted the need for services to support autistic adults with aging and a need for research and training to be improved upon going forward.
4. Social relationships and informal support
Participants reported positive relationships and informal support from friends and family as being helpful. Those who received informal support for autism and aging noted that it was needed to “make up for the lack of available formal aging support.” In addition to this, social relationships and informal support were particularly valued when it was adapted to their needs (this includes solutions to sensory needs, emotional recognition, and support with proactiveness). Participants reported being fearful of isolation due to not having many friends (as a result of their neurodivergent identity) and lifelong difficulties in building social support networks.
5. Formal support
The last theme which arose in the present study relates to seeking formal support. For example, fears about seeking support and what support for aging could look like were discussed. In seeking support, obstacles to support arose as another theme, with some feeling like being autistic was a “greater vulnerability” and they therefore feared accessing aging support. These fears were exacerbated when individuals were already struggling with autistic burnout and/or already had difficulties receiving services previously. Among older participants in particular, seeking support was viewed as necessary. Finally, with respect to adapting services, participants expressed that proactive outreach regarding available services would make it easier for them to access the support they need. In other words, participants felt that an advocate or intermediary would be helpful in supporting the aging process for autistic adults.
Overall, the qualitative interview study conducted by Aitken et al. (2024) offers incredibly important insight into the experience of autistic adults in aging. Aitken et al. (2024) aimed to address the gaps in literature on autism and aging by focusing on middle-aged and older autistic adults. The study focused on participants’ views on aging well, as well as on their age-related support needs, and how support services could be improved upon to make it easier to age well. Findings highlight that middle to older aged autistic adults may have increased aging needs because of perceived risk of certain conditions, society being less adapted to autistic needs, and links between autism and aging which are less known.
References:
Aitken, R., Berry, K., Gowen, E., Brown, L. (2024). How do autistic adults experience ageing? A qualitative interview study.
Abdi, S., Spann, A., Borilovic, J., de Witte, L., & Hawley, M. (2019). Understanding the care and support needs of older people: a scoping review and categorisation using the WHO international classification of functioning, disability and health framework (ICF). BMC Geriatrics, 19(1), 195. https://doi.org/10.1186/s12877-019-1189-9
Hwang, Y. I., Foley, K. R., & Trollor, J. N. (2020). Aging Well on the Autism Spectrum: An Examination of the Dominant Model of Successful Aging. Journal of Autism and Developmental Disorders, 50(7), 2326–2335. https://doi.org/10.1007/s10803-018-3596-8
