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Where Are the Autistic Elders? Exploring Aging and Autism

  • Writer: Marie-Pier Leroux
    Marie-Pier Leroux
  • Aug 5
  • 9 min read

Please note, this blog will be available exclusively in English for this week*


Autism is finally being recognized as something that lasts across a person’s whole life, not just something that touches children. But that raises an important question: where are all the autistic elders? Even though there’s been a big increase in awareness and diagnoses over the past few decades, especially in kids, we still know very little about what life looks like for autistic people as they age. The first generations of adults who were diagnosed later in life are now reaching older adulthood, yet their experiences are rarely talked about. Why is there so little research, so few services, and such limited support for them? And what does that say about how our systems and our society value neurodivergent people as they grow older?


A Missing Chapter in Autism Research

 

Even though more people are paying attention to autism throughout a person’s whole life, older autistic adults are still almost completely missing from most research. In fact, studies about aging and autism make up less than 1% of all autism research (Mason et al., 2023). Most of what we know comes from studies on kids and teenagers, so we really don’t have a clear picture of what aging looks like for autistic people. And the small number of studies that do exist usually focus on middle-aged adults, leaving a huge gap when it comes to understanding the experiences and needs of those over 60 (U.S. National Library of Medicine, 2024).


Health and Well-Being in Later Life

 

Many older autistic adults face complicated health challenges. Studies show that about 71% of autistic seniors have at least one other physical or mental health condition, and 37% are dealing with three or more (Hand et al., 2020). These issues often include things like anxiety, depression, diabetes, and heart problems. Mental health struggles don’t just disappear with age; they can get worse, especially because many autistic people have spent their lives masking, feeling marginalized, or excluded. Unfortunately, this all too often leads to a lower quality of life, and there are very few supports out there that really understand or meet the sensory and communication needs of autistic elders.


Cognitive Aging and Dementia Risks


When it comes to how autism touches cognitive aging, there’s still a lot we don’t know. There isn’t a clear answer yet about whether autism itself increases the risk of dementia, but new research is starting to show some worrying patterns.


For example, one early study found that about 1.9% of autistic men and 3.2% of autistic women over 65 had been diagnosed with dementia (Huang et al., 2020). More recent research backs this up and even shows higher numbers. A big study published in JAMA Network Open found that 8.03% of autistic people had dementia, and this number went up to 8.88% for those who also have an intellectual disability, compared to just 0.97% in the general population (Mason et al., 2023). This means autistic people are much more likely to develop dementia than others, which highlights how important it is to have early screening and supports designed just for them as they get older.


Another study found that adults with autism are about 2.6 times more likely to be diagnosed with early-onset dementia than people without autism. Some researchers think this might be because of shared genetics; some of the same genes linked to autism are also connected to a higher chance of developing dementia (Mason et al., 2023). It’s also possible that the executive functioning and memory difficulties many autistic people already face get worse as they age and overlap with other neurological issues. Even with this new info, though, we still need a lot more long-term studies to really understand what’s going on and how best to help.


Dementia is rarely talked about as a form of neurodivergence, but it absolutely fits within that framework. Like autism, dementia affects how a person experiences the world, communicates, processes information, and connects with others. It brings changes to the brain that can shape a person’s thinking, memory, emotions, and behaviour in ways that fall outside what society considers “typical.” Seeing dementia through a neurodiversity lens helps shift the focus from just loss and decline to one of adaptation, support, and respect for changing cognitive needs. It also challenges the idea that neurodivergence is only something you’re born with, reminding us that brains can diverge at any point in life, and that those changes are just as worthy of understanding, dignity, and care.


Loneliness, Isolation, and Community Disconnection

 

Social isolation is one of the biggest challenges faced by autistic elders. Many report having fewer social connections and less participation in community life compared to non-autistic people (Jaswal & Akhtar, 2024). Even when they live in the community, not in institutions, many autistic adults still struggle to feel truly connected to others. AIDE Canada (2023) points out that feeling socially connected is strongly linked to better mental health and overall well-being, especially for autistic people over the age of 40. But the reality is, most community programs aren’t built with sensory-friendly or neurodivergent-inclusive approaches in mind. So even when autistic people want to be involved, the spaces and supports often just aren’t there.


Housing, Employment, and Economic Vulnerability


On top of health challenges and social isolation, autistic elders also face big barriers when it comes to housing and employment. Most housing options don’t take into account both the realities of aging and the specific needs of autistic people. Things like long waitlists, unsafe or overstimulating environments, and high costs make it even harder to find a place that truly works. When it comes to employment, autistic adults already have low participation rates, and for older adults, ageism just adds another layer of difficulty (Nicolaidis et al., 2023). All of this makes many autistic elders financially vulnerable, which often means having to rely on public systems that are already stretched thin and not always equipped to meet their needs.


Life Expectancy and the Invisible Toll

 

One of the most concerning things we’ve learned from research is that autistic people tend to have a much shorter life expectancy than the general population. Some studies show that the average lifespan for autistic individuals is between 39 and 58 years; that’s several decades less than the global average of 72 (Sutcliffe, 2023). This gap isn’t just about health; it reflects the lifelong impact of chronic stress, untreated or misdiagnosed mental health issues, physical health conditions, and the emotional toll of constantly trying to navigate a world that isn’t built for us (Huang et al., 2020).


Recommendations for a More Inclusive Future

 

If we really want to support autistic elders, we need to make big changes to how things are done. First, we have to invest in research that actually focuses on aging and autism, especially studies that include people aged 60 and up. We need long-term, community-based research that reflects the full diversity of autistic lives (Mason et al., 2023). And it’s not enough for researchers or policymakers to decide things for us, autistic elders need to be actively involved in shaping the services, policies, and research that affect them (Nicolaidis et al., 2023).


Mental health and social connection also need to be taken seriously. That means creating programs that are inclusive, but also trauma-informed and affirming, not just “autism-friendly” on the surface (Jaswal & Akhtar, 2024; AIDE Canada, 2023). And we need to rethink healthcare, housing, and employment systems so they actually work for older autistic people, not just for younger folks (Nicolaidis et al., 2023).


Autistic elders are here, and they deserve to be seen, heard, and supported. The fact that they’re so often left out of research and services isn’t because there are so few of them, but because of ongoing social neglect. As more of us grow older with an autism diagnosis, it’s time for our systems to catch up. By truly listening to autistic elders and recognizing both their strengths and their needs, we can build a society that doesn’t just accommodate neurodivergent people, it welcomes and values us, at every age.


Falling Through the Cracks: A Lack of Lifespan Support


A big issue that often gets overlooked is how autistic people are supported, or not supported, through different stages of life. Most services and programs are designed with children in mind, and while some resources exist for young adults, very few are set up to support autistic people as they grow older. Once someone ages out of pediatric or early adult services, they often lose access to vital supports like occupational therapy, social groups, or case management. There’s little to no planning for what happens next, especially as people approach older adulthood. This lack of continuity can seriously affect mental health, increase stress, and make it harder to access benefits or plan for long-term care. For many autistic adults, it feels like they’re expected to just figure things out on their own once they reach a certain age, which is both unfair and harmful.


When Caregivers Age: Facing Uncertain Futures


Many older autistic adults continue to live with aging parents or caregivers who have supported them for most of their lives. While this support is invaluable, it raises difficult questions about what happens when those caregivers grow older, become ill, or pass away. The loss or reduction of lifelong support can be devastating, leaving autistic elders suddenly without the help they depend on. This situation creates immense stress, not only for the autistic individuals themselves but also for social service systems that are often unprepared to step in. Planning for these transitions is urgent, yet too often overlooked, leaving many autistic elders vulnerable and uncertain about their future care.


The Challenge of Diagnosis: Misunderstandings and Missed Opportunities


Autism in older adults remains widely misunderstood, which often leads to symptoms being mistaken for other conditions like dementia, depression, or personality disorders. This diagnostic confusion means many autistic elders go undiagnosed or are misdiagnosed, sometimes after years of struggling without proper support. Because autism has historically been seen as a childhood condition, clinicians may overlook it in seniors, especially if the person has learned to mask or compensate for their traits. This lack of recognition not only blocks access to autism-specific services but can also result in inappropriate treatments that fail to meet the individual’s true needs. Improving awareness and diagnostic tools for older adults is essential to ensure autistic elders receive the respect and care they deserve.



Technology That Fits: Meeting the Needs of Autistic Elders


Many digital tools designed to support communication, daily routines, or social connection overlook the specific needs of older autistic adults. Whether it’s apps, devices, or online platforms, few take into account sensory sensitivities, executive functioning challenges, or age-related changes like vision or hearing loss. This gap means that both low-tech and high-tech supports often fall short of truly helping autistic elders live independently and stay connected. By designing technology with autistic seniors in mind, prioritizing accessibility, simplicity, and sensory-friendly features, we can create tools that empower rather than frustrate, improving quality of life as people age.


Communication Gaps in Care: Risks for Autistic Elders


Many long-term care homes, home support programs, and other elder care settings are not equipped to understand or accommodate autistic communication styles and needs. This lack of training can lead to frequent miscommunication, which risks undermining an autistic elder’s autonomy and dignity. Without proper understanding, caregivers might misinterpret behaviors or fail to recognize valid expressions of discomfort or need. In worst cases, this can lead to inappropriate interventions, increased anxiety, or even harm. Improving staff education on neurodivergent communication is essential to creating safe, respectful environments where autistic elders can thrive.


Conclusion


Autistic elders are here, and their experiences deserve our attention and respect. Yet far too often, they remain invisible in research, services, and public conversations. From gaps in healthcare and housing to social isolation and diagnostic challenges, the realities faced by older autistic adults are complex and urgently need to be addressed. By investing in age-specific research, improving continuity of care across the lifespan, and designing supports that truly reflect autistic seniors’ unique needs, we can begin to close these gaps. Most importantly, listening to autistic elders themselves and involving them in decisions about services and policies is key. It’s time for our systems to evolve, not just to accommodate autistic people as they age, but to welcome them fully and compassionately into every stage of life.


If you want to watch my webinar Autism and Older Adults, where I talk in depth about autism across the lifespan, click on the link below.



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