OARacle Newsletter

When most people think about autism, they think of it as something that only affects children. Yet autism is a lifelong condition, and most autistic people are adults. Based on census data for the United States and the United Kingdom (and most other western countries), 20% of the autistic population are under 18 and 80% are over. Those percentages do not take into account the high rates of underdiagnosis among adults. 

Despite this, research has historically focused on young people, leaving gaps in our understanding of what happens as autistic people move through midlife and into older age. Until recently, less than 1% of all autism research focused on older people. However, this is changing, and over the last decade, there has been a rapid growth in studies exploring what it means to age as an autistic person.

One of the biggest challenges we face in understanding aging in autistic populations is the “underdiagnosis problem.” The diagnostic criteria for autism have changed dramatically over the last several decades, and many people who would receive a diagnosis today were overlooked as children. When autism first appeared in diagnostic manuals in the 1960s, it was called “Infantile autism” and thought to be a rare condition affecting mostly young boys with learning difficulties or intellectual disabilities. Girls, people without language delays, and anyone who did not fit the narrow criteria were often missed altogether.

As a result, many people who are now middle-aged and older likely never even heard about autism, let alone found out they were autistic. For some, receiving an autism diagnosis in adulthood helps makes sense of their experiences. For others, the realization may come through self-identification, without formal diagnosis. Our data suggests around 90% of autistic people aged 40-59 and up to 97% of those aged 60 or over remain undiagnosed, forming part of what some researchers call a “lost generation” of autistic people. So, with this in mind, what do we know about aging and autism? 

Health and Wellbeing

Health is one of the commonly researched topics affecting older autistic people. Our findings show that autistic people in midlife and old age are more likely than non-autistic people to experience a range of physical and mental health difficulties. Cardiovascular disease, osteoporosis, Parkinson’s disease, anxiety, depression, and sleep problems all appear to be more common in middle-aged and older autistic adults. For autistic women, menopause can be particularly challenging, with reports of more intense physical and emotional symptoms.

Mental health crises are also common, and rates of suicidal thoughts and behaviors are much higher than in the general population. This is particularly concerning, as autistic adults may also face barriers to healthcare access, such as a lack of autism understanding among health professionals or inflexible systems that are difficult to navigate.

Despite these challenges, many autistic people in midlife and old age describe receiving an autism diagnosis later in life as transformative. This “lightbulb moment” allows them to understand themselves better and find self-acceptance, as well as being better equipped to advocate for their unmet support needs.

Cognitive Aging and Dementia

When it comes to cognitive aging, the evidence so far paints a mixed picture. Like their non-autistic peers, some middle-aged and older autistic adults show strong cognitive skills well into later life, while others experience more difficulties with memory, planning, and problem-solving. 

Researchers have begun exploring whether autistic people might be at higher risk of cognitive decline or dementia. The evidence is far from clear, and large-scale, long-term studies are needed to understand what is really happening. Some studies using U.S. healthcare records have found that autistic people are at higher risk of developing dementia than the general population, but given that over 90% of autistic people age 40 and over are likely to be autistic but undiagnosed, we cannot make conclusions yet.

Social Support, Loneliness, and Isolation

Across many studies, one message stands out clearly: social connection matters for autistic people as they age. Middle-aged and older autistic adults who have supportive social networks tend to report a higher quality of life, while loneliness and isolation are linked to poorer wellbeing. We have found in various studies that many autistic people describe having fewer social connections and experiencing greater isolation, particularly as they grow older. 

Yet there are also examples of autistic people who thrive when they are supported. Donald Triplett, known as the first person to be diagnosed with autism, lived a full and happy life until the age of 89. He worked in a supportive community, pursued golf and other hobbies, and was valued by those around him. His life reminds us that with understanding and acceptance, autistic people can flourish throughout their lives.

Looking Ahead to the Future of Autism and Aging Research

The research on aging and autism is growing rapidly, for example, my 2022 review found a 392% increase in publications on autism and aging since 2012. However, there is still much more to do. We need studies that follow autistic people throughout their lives so we can understand how their experiences and needs change with age. This kind of research will help identify when and how to provide the best support.

It is also important that aging and autism research becomes more representative. Most studies still overlook autistic people with intellectual disabilities or high support needs, as well as those diagnosed in childhood. To truly understand autism in midlife and old age, we must include the full diversity of autistic experiences.

Beyond research, there is a pressing need to improve healthcare access and social support for autistic adults as they age. Health professionals need better training to recognize undiagnosed autism and to make their services more accessible for those seeking support. Social isolation should also be treated as a serious societal issue. Additionally, a more holistic approach should be taken to help and support. For example, older autistic adults may need specific help with finances, housing, retirement, long-term care homes, and navigating social care systems, all of which can be difficult even for non-autistic people.

Most importantly, autistic people themselves must be involved in shaping the future of research and policy. They are the most knowledgeable about their own experiences and can help ensure that support is relevant, respectful, and effective. A ‘one-size-fits-all’ approach is unlikely to work, given the diversity of autistic experiences.

As I reflect on writing this article, it is important to recognize the strides we have taken in such a short time. When researchers first started exploring autism and aging, the field was so small that you could read every paper in an afternoon. Now, it is expanding quickly, driven by growing recognition that autistic people deserve to age well, with dignity, good health, and a sense of belonging. The takeaway message is clear: we are adults for most of our lives, and aging is an important consideration for all. By listening to autistic voices, improving research, and building more inclusive systems of support, we can make sure that no autistic person is left behind as they grow older.

For more information, Dr. Stewart recently published a narrative review about aging and autism that is free to read.  

Dr. Stewart is a senior research fellow at King’s College London in the United Kingdom. His research focuses on the health, cognition, life experiences, and support needs of autistic (and other neurodivergent) people in midlife and older age. Much of his work seeks to improve the understanding of autism in older age, with the aim of increasing the provision and accessibility of adult autism assessments in historically overlooked populations. He has published widely on aging and autism and provided keynote lectures at international conferences. You can contact Dr. Stewart through his university page.