an illustration of tree rings, symbolizing growth, age, and individuality

As an outsider academic, I often find myself locked out of the latest research behind paywalls. Sometimes I can access papers when I’m near a university library. Most of the time, I’m left with open access crumbs. (This is not fair. I pay taxes that fund universities. I’d argue that using public money to fund research and publication of research implies that the public should have access to the information we are paying for. (Also, I would be more willing to pay for access if the money flowed to the authors instead of in the other direction.))

I’ve been thinking a lot about aging and autism lately, so I pulled up what I could access on that first search phrase: four recent (published in the last four years) open-access papers exploring autistic aging. These papers highlight not just the challenges Autistic people face as we age but also the complexity and diversity of our experiences.

Here’s a summary of what I found. Collectively, they spoke to intersections of health, cognitive function, and social inclusion for Autistic adults.

(If you have access to articles on autism and aging, I would love to hear from you—I’ll gladly review them. This is an area of study I want to spend more time with.)

The Think Tank Paper: Strategies for Autism and Aging

The cornerstone paper of what I found today was a 2021 think tank report titled Strategies for Research, Practice, and Policy for Autism in Later Life. This paper offers a comprehensive roadmap for addressing the challenges Autistic people face as we age.

It emphasizes the importance of inclusion and collaboration, guided by the principle “Nothing about us without us.” The authors argue that aging outcomes are not solely determined by biology but shaped by systemic factors like access to healthcare, housing, and social support. They call for interdisciplinary approaches that focus on abilities rather than disabilities, situating autistic aging within a socio-ecological framework that considers the individual within their environment and community.

Key recommendations include:

• Developing tools to diagnose and study autism in older adults.

• Expanding housing and community support options tailored to autistic needs.

• Addressing the high rates of co-occurring medical and mental health challenges in autistic adults.

• Advocating for lifelong learning and employment opportunities.

This paper provides a hopeful and practical foundation for thinking about autism and aging. The think tank raised important questions for researchers to address.

What the Other Three Studies Reveal

Cognitive Decline: Stratified Insights

A longitudinal study on cognitive aging in autism, published in 2023, challenges some common assumptions, among them, the previously held belief that autism is universally a dementia risk factor. Among Autistic adults without intellectual disabilities, cognitive decline does not appear to accelerate compared to neurotypical peers.

This is an important finding: it reminds us that autism manifests in diverse presentations. Some Autistic people may show resilience in cognitive function, while others—especially those with intellectual disabilities or co-occurring conditions—face greater risks, as also highlighted in the think tank paper.

Inclusive research needs to balance these perspectives. By understanding where accelerated decline occurs and where it doesn’t, we can target interventions appropriately. For Autistic adults without intellectual disabilities, the focus might shift to other issues, like social isolation or physical health, while not neglecting any Autists who do experience cognitive challenges.

Motor and Neurological Trajectories After 40

Aging with Autism Departs Greatly from Typical Aging, a 2020 paper, which analyzed involuntary motor variability using fMRI data, revealed something striking: Autistic aging diverges sharply from neurotypical aging, particularly after age 40.

Autistic adults show unique motor and neurological patterns that suggest a fundamental shift in how our nervous systems age. While these changes don’t necessarily indicate cognitive decline, they might translate into everyday challenges like clumsiness, fatigue, or increased sensitivity to sensory inputs.

This study highlights the need for tailored physical and occupational therapies to support motor function and adaptability in midlife and beyond. It also underscores how important it is to consider biological aging alongside social and systemic factors, as the think tank paper advocates.

Systemic Barriers and Social Isolation

The first of the four papers I read was Aging Well and Autism: A Narrative Review and Recommendations for Future Research (published in 2024). It paints a stark picture of the systemic challenges Autistic people face as we age:

• High rates of loneliness and social isolation.

• Limited access to tailored healthcare and mental health services.

• Persistent disparities in quality of life, with little improvement over time.

These findings align with the think tank’s call for better community-based solutions. Housing models like intergenerational living or microboards, for example, could address social isolation while respecting the independence of Autistic adults. Similarly, expanding access to mental health services tailored to Autistic needs could dramatically improve outcomes.

The Bigger Picture

Taken together, these studies reveal the complexity of aging in autism. On the one hand, we see encouraging findings, like the absence of accelerated cognitive decline in some subgroups. On the other, we face sobering realities, like the heightened risks of loneliness, health challenges, and systemic neglect.

To address these issues, we need both broad, inclusive research and stratified studies that identify the unique needs of different subpopulations. Autistic aging isn’t a monolith, and our approaches to support and policy shouldn’t be either.

Conclusion

Autistic people deserve to age with dignity, support, and understanding. The research I’ve reviewed here offers valuable insights and highlights how much work remains to be done. Let’s continue the conversation—whether by sharing studies, advocating for inclusive policies, or simply listening to Autistic voices telling our own stories of aging.

If you know of studies on autism and aging please send them my way. Together, we can discuss these findings and push for a better future for ALL Autistic adults.

Works Cited

Edelson SM, Nicholas DB, Stoddart KP, Bauman MB, Mawlam L, Lawson WB, Jose C, Morris R, Wright SD. Strategies for Research, Practice, and Policy for Autism in Later Life: A Report from a Think Tank on Aging and Autism. J Autism Dev Disord. 2021 Jan;51(1):382-390. doi: 10.1007/s10803-020-04514-3. PMID: 32361792; PMCID: PMC7195819.

Klein CB, Klinger LG. Aging Well and Autism: A Narrative Review and Recommendations for Future Research. Healthcare (Basel). 2024 Jun 17;12(12):1207. doi: 10.3390/healthcare12121207. PMID: 38921321; PMCID: PMC11203987.

Torenvliet C, Groenman AP, Radhoe TA, Agelink van Rentergem JA, Van der Putten WJ, Geurts HM. A longitudinal study on cognitive aging in autism. Psychiatry Res. 2023 Mar;321:115063. doi: 10.1016/j.psychres.2023.115063. Epub 2023 Jan 18. PMID: 36709700.

Torres EB, Caballero C, Mistry S. Aging with Autism Departs Greatly from Typical Aging. Sensors (Basel). 2020 Jan 20;20(2):572. doi: 10.3390/s20020572. PMID: 31968701; PMCID: PMC7014496.