Ageing on the autism spectrum

When I first became involved in research on autism and ageing in 2015, it was feasible to sit down with a cup of coffee and read through the entire literature in an afternoon. As an eager undergraduate, that was what I did. At that time, research papers involving autistic people in midlife and older age were often descriptive case reports or small-scale studies, with male-dominated demographics, and often reported inconsistent findings. In the years since, the autism ageing research landscape has dramatically changed.

Last year, my colleagues at King's College London and I conducted an impressionistic review to explore how the autistic ageing research landscape has evolved over the past decade. We found that there has been a near threefold increase in the number of publications focusing on autism in midlife and older age. Despite this, we also found that less than 1 per cent of the overall autism research literature has focused on older people. So, while this expansion of the literature is reassuring, there is still a lot of work to be done to ensure autistic people in midlife and older age are understood and receive the support they need as they age.

Autism is not a 'new' condition; autistic traits were first clinically described in the 1920s, autism characterised by Asperger and Kanner in the 1940s, and included in diagnostic manuals in the 1980s. Since then, major changes have occurred to the diagnostic criteria for autism, including broadening a once 'narrow' spectrum, meaning that individuals diagnosed with autism today are likely to exhibit different autistic characteristics compared to those diagnosed in the 1980s or earlier.

A study by O'Nions and colleagues emphasises the relevance of this to older people. Their study of primary health care records indicates that, as of 2018, approximately 1 in 34 children had an autism diagnosis compared to only 1 in 6,000 older adults. Three in four autistic people in the UK may be undiagnosed, and this is likely to be disproportionately impacting middle-aged and older people, particularly women, forming a lost generation of autistic people.

In response to these issues, autism researchers have taken two approaches to expand our understanding of ageing on the autism spectrum.

The first, the dimensional approach, explores autism as the extreme of a continuum of traits and characteristics. Using this approach involves identifying those with high autistic traits and using this as a proxy for diagnosis. While there is no guarantee that these 'high trait' people are undiagnosed autistic individuals, the dimensional approach can be easily implemented in large-scale studies and can be used to generate hypotheses for further study in diagnosed autistic groups.

The second, the categorical approach, explores the experience of those who have an autism diagnosis, often first obtained in adulthood. This approach can be expanded to include those who self-identify as autistic, but who do not have a clinical diagnosis. While these approaches do have key differences, they are complementary and helpful for generating information about the lived experiences of those ageing on the autism spectrum.

Both approaches have been successfully implemented to explore a broad range of research topics that address the important question of 'what happens to autistic people when they get older?'. For example, studies using the dimensional approach have identified a range of differences in middle-aged and older people who have high or low autistic traits across domains. In the health domain, middle-aged and older people with high autistic traits have been found to have high rates of most psychiatric conditions and mental health crises, some physical health conditions, and to report worse sleep quality.

In the domain of cognition, this group has been found to have subtle differences in their general cognitive abilities, as well as their socio-cognitive abilities. They also self-report more cognitive decline than those with low autistic traits. In life experiences, this group have been found to report high rates of childhood and adult trauma, including emotional neglect/abuse and sexual abuse, associated with high rates of post-traumatic stress disorder symptoms. Finally, studies looking at biomarkers have identified a faster pace of ageing, compared to those with low autistic traits.

Studies using the categorical approach have found a similar pattern of results, particularly in areas related to health and cognition. However, work still needs to be done to further examine life experiences and biomarkers in autistic populations. Additional studies involving either diagnosed or self-identified autistic adults have found that autistic people in midlife and older age often have poorer normative life outcomes than non-autistic peers. Furthermore, middle-aged and older autistic people often report having a lack of support and being less socially connected than non-autistic people, and this is associated with lower quality of life.

These findings tell us that older autistic people may require additional support as they age. Future research should involve longitudinal methodologies, as it is only through tracking change with age that we can evaluate how the profiles and support needs of older autistic people change throughout later life. Relevant support may include ensuring older autistic adults have access to healthcare support for their mental health, addressing potential social barriers to prevent them from becoming socially isolated, and ensuring that they have security in their finances and housing needs in later life. However, there is little evidence-based research about how to best implement support for older autistic people and importantly, autistic people themselves should be involved in identifying how support is implemented and tailored, as it is unlikely that a one-size-fits-all approach will be sufficient.

As researchers and clinicians, we could look to well-recognised autistic people in older age for inspiration for how people can reap the benefits of support. Donald Triplett, who was Kanner's 'Case 1', died at 89 years old in June 2023. Donald was embraced by his community throughout his life and modelled a happy older age. He worked in a supportive environment for nearly seven decades, and pursued hobbies and interests, such as golf, well into later life. Donald's life exemplifies that when people are supported, they can thrive and as a researcher, that is what motivates me to continue my work in autism and ageing.

Dr Gavin R. Stewart is a British Academy Postdoctoral Research Fellow at King's College London, with interests in autism and ageing. Gavin's recent research has used quantitative and qualitative methods to explore the health, cognition, impact of adverse life events and periods of crisis, sleep, quality of life, and support needs of autistic people in midlife and older age.

I have recently had an extended spell on a hospital ward, sharing a bay with a number of different older women, many with dementia. I observed these women and how they interacted with (and retreated from) their environment, loved ones and hospital staff. I paid attention to what soothed them, how they processed language and the impact the environment had on their comfort and distress.

I was acutely aware that the resistance and fear experienced by these women made sense to me, an autistic woman, and that led me to wonder if perhaps the processing differences that happen in dementia are similar to those that occur in autism. Can we learn from this? Could we share strategies across disciplines? The distress behaviours were so familiar to me that a sixth sense, neuroception perhaps, was activated in me. I wondered if the strategies I use every day for myself and my youngest child could help soothe and regulate these patients.

Gavin's article sparked so many questions for me about how we can move forward, compassionately and with a greater understanding, to ensure we are creating services that truly meet the needs of older people.

In the absence of research, can we take a practice-based evidence approach and begin to create responsive services based on the emergent relational approaches and polyvagal theory we can see working for autistic people? I wondered if ideas from neurodivergence and ageing fields might be most impactful when combined. I wanted to respond to Gavin's article, not by way of critique but to initiate a dynamic dialogue that pre-empts some of the problems we are rapidly moving towards. How do we accurately frame the questions we need to ask?

Gavin talks about the different rates of autism diagnosis between older populations and younger populations. The reason for this disparity between identification rates in younger populations and older populations is twofold. Firstly, the changes to diagnostic criteria and the societal shift in understanding and identifying autism. Secondly, people with a diagnosis of autism continue to have lower than average life expectancy (previously very low) with few individuals living past middle age.

It is vital to understand this because using this information we can expect this gap to close as the life expectancy of autistic people improves in response to comparatively better health, education, welfare and social care provision, and we can see the trend towards late diagnosis in adults of all ages leading to an increase of older people with autism. When we consider these factors alongside the higher percentage of autistic people in our younger population who will inevitably age, we can anticipate that this disparity will diminish year on year until we are seeing similar rates of autism across all age groups. Our services need to be ready for an ageing autistic population!

Gavin's article also cites categorical research which has found patterns of poorer health and greater decline in cognition in autistic adults in middle or older age. These findings are consistent with the features of autistic burnout and not necessarily a feature of age per se. However, ageing may contribute to the stressors that can lead to autistic burnout (being unwell, being in pain, loss of autonomy, being misunderstood, bereavement, losing safety of environment/routines/relationships).

This distinction is important because cognitive decline can be a feature of ageing (although there are many interventions that can slow, halt or even reverse this process), but cognitive decline as a feature of autistic burnout is a temporary state as long as the cause is addressed. We must not mistake autistic burnout happening in response to normal life transitions for an inevitable decline in health and/or cognition. To do so would risk compounding the issue. We need to understand what autistic burnout looks like, how it presents in different age groups, risk factors, differential diagnoses and most of all how to support recovery.

Gavin goes on to argue that the many findings associated with poorer life outcomes in older age for autistic adults tell us that older autistic people may require additional support as they age. We need to get to the root of the why; Is this organic or a result of health inequality? In Neurotribes, Silberman talks about Kanner revisiting children in later life and discovering that those children who had been integrated into community or family settings with meaningful, adapted work were thriving and those who had been institutionalised had significantly deteriorated and lost functionality and independence skills with significantly poorer mental health.

By understanding why autistic people need additional support as they age (and leaning into the additional needs fallacy as discussed in this issue by Kieran Rose) we can consider if support and intervention need to be targeted in old age or directed at addressing health and social inequalities earlier in life to prevent higher dependency in old age. Or, if in fact the 'additional need' is a repercussion of taking a one-size-fits-all, neuronormative approach to old age, particularly in institutional settings.

There are parallels here with the school-based trauma which is so prevalent. Old age and school age are the two times in our lives when we are universally expected to fit in, conform, and live within the conventions of a group setting. Autistic people need additional support throughout such life stages due to the impact of living in an ableist and neurotypical society. The additional support needed in older age may be a result of the lack of support to thrive and build full lives with meaningful work, strong social connections within relationships and community and equitable access to health and social care. By compensating for 'poorer normative life outcomes' this may even reduce the need for support going into older age.

We also need to establish a baseline for what is optimal, compassionate social support and investment, equalised to the standards for quality of life expected for non-autistic (allistic) peers. To do this we need to investigate the health economics of high-level support and investment in intensive early interventions, particularly at key life transitions, to ascertain if this approach can reduce the economic costs of care whilst increasing Quality Adjusted Life Years (QALY's). Hilary Cottam's TED talk introduces her pilot project to reduce loneliness in older people, suggesting that optimal care is in fact low cost and centred in community organising.

To really understand the support needs of an ageing autistic population we also need to address the health inequalities faced by women, AFAB and trans people. We know that there is a link between early menopause and dementia, a risk which can be mitigated with hormone therapy. We also know perimenopause can cause a crisis in mental health and significantly impact cognitive function in women and AFAB people.

We know that hormonal transitions such as menarche, menstrual cycle, postpartum, chestfeeding/weaning and menopause can all impact exacerbation of neurodivergent traits, mental health issues and disordered eating behaviours (see @theadhdcycle on Instagram). We know autistic women are underdiagnosed and trans and non-binary people have higher rates of autism than the cis population. We need to start joining all these dots and mapping out the intersections so we can anticipate and address health inequalities that will worsen or increase with age.

Autistic advocate and trainer, Paul Micallef states that whether autism is well supported or unsupported will impact on the presentation of autistic traits and how well that person can 'function' or navigate the world. The same person will have very different needs depending on the support that is in place. Having spent time in a care home as part of my recovery I can reflect on the unsuitability of the environment for autistic people.

The loss of autonomy, social and environmental stressors and lack of access to self-regulatory strategies will all impact on the mental and physical health of older autistic people. Arguably, these settings are not suitable for allistic older people either, contributing to loneliness, low physical activity levels, poor diet, loss of meaningful activity, decline in cognitive function and memory (use it or lose it) and decline in independent living skills. Perhaps viewing ageing through an autistic lens is the motivation we need to start creating more person-centred, community-based, inter-generational, supportive care solutions.

However this field moves forward, we need to recognise that we are rapidly approaching a crisis and the best solutions will come from centring autistic people when planning and conducting research about autism and ageing. Autistic people exist in all communities and older care currently reflects the societal norms of white supremacy, cis normativity and hetero normativity. As highlighted by Joris Lechêne elsewhere in this edition, we need to challenge the colonial mindset assumptions in our research design. This is an exciting opportunity to design solution-focused, fit-for-purpose research and head off some of the problems that are currently heading our way. I'm excited to take this conversation forward with Gavin and see where curiosity takes us.

Jennifer Law is an autistic/ADHD/PDA trainer, consultant and advocate and parent to four neurodivergent children. She is a director of Allez Oop, and reflects here on her thoughts about ageing after spending time in dementia services aged only 46 whilst recovering from surgery.