Autistic people experience different challenges as they age compared to their non-autistic peers. fizkes/ Shutterstock

Autism is often thought of as a childhood condition, but this is far from true. Autism is a lifelong condition – and most autistic people are adults. Yet less than 1% of autism research has focused on older autistic people.

This means we know very little about the needs of autistic people are they grow older – and whether they face unique health challenges as they age.

So to better understand what the current evidence tells us about autism in midlife and old age, a colleague and I recently conducted a narrative review of more than 70 published papers from across the globe.

Our findings revealed that autistic people are more likely to face poorer health outcomes in midlife and old age compared to their non-autistic peers.

Our review found that the core characteristics of autism (such as differences in communication, repetitive behaviours and dedicated interests) remain relatively stable into later adulthood – although there’s some variability in individual experiences. For example, some autistic people find that their senses become more sensitive as they age, while others don’t find this to be the case.

For those diagnosed with autism later in life, receiving this diagnosis often proved life-changing – giving them greater self-understanding and acceptance of themselves.

More health-related difficulties

Health problems are a major concern for autistic people as they get older.

We found that autistic people are more likely to experience most physical and mental health conditions than their non-autistic peers. This included greater risk of being diagnosed with cardiovascular disease, anxiety and depression and other age-related conditions such as osteoporosis and Parkinson’s disease.

Our review also revealed that autistic adults may be more likely to experience more complex health problems. For instance, one study showed autistic people were more likely to be diagnosed with multiple mental health conditions.

For those in midlife, menopause is a challenging transition. Many autistic people reported experiencing more severe physical and psychological menopause symptoms compared to non-autistic people.

We also uncovered evidence that found life expectancy may be lower in autistic adults compared to non-autistic people. This is often linked to conditions such as epilepsy and high rates of suicide.

Many autistic people also encountered barriers in accessing physical and mental healthcare and support – often because services lacked autism awareness. This further contributed to poorer health outcomes.

A mixed picture for cognitive health

The evidence was rather mixed when it came to cognitive abilities in midlife and old age.

Some autistic adults maintain strong cognitive skills in later life. But others struggle with memory and executive function (thinking and planning), which are important cognitive skills in day-to-day living.

Two elderly people try to complete a puzzle.
Some autistic people struggle with important cognitive skills as they get older. Lucigerma/ Shutterstock

While many autistic people will cognitively age in a similar way to non-autistic people, there’s some evidence that autistic adults may face a higher risk of cognitive decline and dementia. However, more large-scale research is needed to better understand this.

The importance of social support

Studies consistently found that autistic adults report lower quality of life compared to non-autistic peers. Mental health difficulties play a significant role in lower quality of life.

A key factor here appears to be social support. Our review found that autistic adults who had strong social networks reported higher quality of life – while loneliness and isolation were linked to poorer wellbeing. This could be because many autistic adults report having fewer social connections and experiencing greater isolation – particularly men.

We also found that factors such as receiving their autism diagnosis, learning to manage their capacity for social interactions and being in social situations and maintaining autonomy play important roles in positively shaping quality of life as autistic people get older.

Important considerations

When thinking about the findings of this review, it’s important to recognise limitations in the current research.

Only a small fraction of autism research has actually investigated ageing and autism. And what published literature has been done of this topic has focused on those diagnosed in adulthood. This overlooks a lot of autistic people. People who are diagnosed with autism in childhood and those with intellectual disabilities or higher support needs, are often excluded from research.

Under-diagnosis of autism is another major issue. Although autism affects around 1% of the global population, health records in the UK show very low diagnosis rates among middle-aged and older adults.

Estimates also suggest that around 89% of autistic people aged 40–59, and 97% of those aged 60 or over, may be undiagnosed. This is, in part, due to autism historically being viewed as a condition that only affected children. Additionally, gender biases in autism diagnoses were common – resulting in women and girls being historically overlooked.

In the future, we need more studies that track autistic people and their experiences throughout their life – including as they get older. We also need to make sure research is representative of autistic people more broadly – for example, by including people with higher support needs and those diagnosed earlier in life.

Finally, autistic adults themselves must be involved in steering the direction of research and the creation of resources and policies. With their input, we can support healthier, more fulfilling and socially connected lives, so they are able to age well with dignity and autonomy.

While ageing in autistic people has been historically overlooked, we’re making a lot of progress in addressing this major gap in research. While the current evidence included in our review has identified a lot of challenges that middle-aged and older autistic people might face, it has also highlighted opportunities for where autistic people can be better supported as they get older – such as improving access to healthcare and helping people remain socially engaged.

With a better understanding of autism in midlife and later life, we can begin to reduce the health risks that autistic adults face as they age and improve wellbeing.

This article is republished from The Conversation, a nonprofit, independent news organization bringing you facts and trustworthy analysis to help you make sense of our complex world. It was written by: Gavin Stewart, King's College London

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Gavin Stewart receives funding from the British Academy.