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New Review Reveals Nearly 90% of Middle-Aged and Older Autistic Adults in the UK Remain Undiagnosed

August 28, 2025
in Social Science
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A groundbreaking narrative review conducted at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London has revealed a startling and largely unrecognized crisis facing autistic adults as they age. The study, recently published in the Annual Review of Developmental Psychology, sheds new light on the pervasive underdiagnosis and compounded health challenges confronting individuals with autism over the age of 40 in the UK. Previous research underestimated these issues due to the invisibility of a vast majority of older autistic adults who remain undiagnosed, resulting in significant gaps in both healthcare and social support systems.

The review underscores an alarming statistic: between 89 and 97 percent of autistic adults aged 40 and above have never received a formal diagnosis. This discrepancy highlights a generational diagnostic gap, where older adults were less likely to be identified as autistic compared to younger cohorts. As diagnostic criteria and awareness evolved considerably over recent decades, many autistic individuals aging today have navigated life without the benefits of recognition or tailored interventions. This invisibility has profound consequences, as they often do not receive adequate healthcare, social support, or workplace accommodations.

Autism is a lifelong neurodevelopmental condition characterized by differences in social communication and behavior, but the notion that people “grow out” of it is a misconception firmly refuted by this review. Despite stable neurological and cognitive foundations, aging autistic adults face unique trajectories of health and wellbeing that diverge from the neurotypical population. However, due to extensive underdiagnosis, these trajectories have been poorly understood, leaving policymakers and clinicians without the necessary evidence to address their needs.

Beyond diagnostic issues, the review brings to light the significantly elevated risk autistic adults face across a broad spectrum of physical and mental health conditions. Middle-aged and older autistic individuals exhibit higher prevalence rates not only for common neurological and psychiatric disorders like anxiety, depression, and early-onset dementia but also for systemic ailments including cardiovascular diseases, autoimmune disorders, gastrointestinal conditions, and musculoskeletal complications such as osteoporosis and arthritis. This broad vulnerability profile suggests that autism-related biological and psychosocial factors may accelerate or exacerbate typical age-related health decline.

One of the most distressing findings highlighted is the dramatically heightened suicidal ideation and self-harm rates among older autistic adults with pronounced autistic traits. Data indicate that this subgroup is six times more likely to contemplate or engage in self-injurious behavior when compared to neurotypical peers. This mental health burden is compounded by the documented challenges in accessing appropriate healthcare services. Autistic adults frequently encounter environmental and systemic barriers, including healthcare settings that are not neurodiverse-friendly, clinicians unfamiliar with autism in adults, and difficulties navigating often fragmented services.

Moreover, the research reveals that cognitive decline manifests differently in autistic populations. Autistic adults were found to be four times more likely to receive a diagnosis of early-onset dementia compared to non-autistic individuals. Notably, there is an observed reduction in average life expectancy by approximately six years in autistic adults, with life expectancy averaging 75 years compared to 81 years in the general population. These disparities underscore a critical need for targeted health monitoring and intervention programs tailored to this group’s distinctive needs.

Healthcare accessibility challenges stem partly from inherent autistic traits such as communication differences and sensory sensitivities, which can make clinical environments overwhelming or difficult to navigate. Additionally, the discontinuity of care and uncertainty about appropriate healthcare providers for ageing autistic individuals often leaves them underserved. Transitioning from child to adult services has long been problematic, and these difficulties only intensify as autistic adults move into older age brackets without adequate support or understanding from medical professionals.

Social determinants of health also play a significant role in the ageing experience of autistic adults. The review highlights elevated rates of social isolation and loneliness, which are known risk factors for both physical and mental health decline. Quality of life for many autistic older adults is closely linked to the availability of strong social support networks, yet many encounter barriers to building and maintaining relationships. Employment history further influences wellbeing, with autistic adults often facing significant obstacles in securing and retaining employment before retirement age, limiting financial independence and social engagement.

The authors of the review advocate for a lifespan perspective on autism, emphasizing that the challenges faced by autistic individuals evolve across different life stages. Current research disproportionately focuses on children and younger adults, leaving an alarming research gap concerning autistic ageing. There is a call for more comprehensive, longitudinal studies that track health, cognitive function, and social wellbeing over time to inform better clinical guidelines and public health policies.

This review was supported by the British Academy and the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre, illustrating a strong collaborative effort bridging psychological science, public health, and social care disciplines. The researchers stress that without tailored healthcare models and social support systems designed with an understanding of autistic ageing, many individuals are likely to continue aging in silence, underserved and misunderstood.

Dr. Gavin Stewart, the lead author and British Academy Postdoctoral Research Fellow, highlights the urgency of recognizing this hidden population. He points out that widespread underdiagnosis has skewed scientific understanding of autism across the lifespan and hindered the development of effective interventions. The review calls for increased clinical training, system navigation support, and appropriate accommodations to mitigate health inequalities and enhance wellbeing among older autistic adults.

Similarly, Professor Francesca Happé, co-author and Professor of Cognitive Neuroscience, stresses the pressing nature of these findings. She argues that ageing autistic populations represent a global public health challenge, necessitating sustained investment in research, clinical infrastructure, and community-based social supports. Their collective vision encompasses integrated, neurodiversity-informed healthcare models that empower autistic adults to age with dignity and fulfillment.

In conclusion, this narrative review marks a pivotal step towards uncovering the underexplored and underserved realities faced by autistic adults as they age. By rigorously compiling and analyzing existing research, the authors illuminate critical gaps and systemic failures, calling for a transformative approach to autism research and care. Addressing these challenges demands commitment from researchers, clinicians, policymakers, and the broader community to create inclusive environments where autistic individuals can thrive throughout their adult lifespan and beyond.


Subject of Research: People
Article Title: Ageing across the Autism Spectrum – A narrative review
News Publication Date: 28-Aug-2025
Web References: https://doi.org/10.1146/annurev-devpsych-111323-090813
References: “Ageing across the Autism Spectrum – A narrative review” (Gavin Stewart and Francesca Happé), Annual Review of Developmental Psychology
Keywords: Developmental disorders, Psychological science, Older adults

Tags: autism awareness in the UKautism diagnosis in older adultsgaps in autism-related healthcare servicesgenerational diagnostic gap in autismhealthcare challenges for autistic individualsimpact of autism on aging populationinvisibility of autistic adultsmental health of older autistic individualsneurodevelopmental conditions in middle-aged adultssocial support for older autistic adultstailored interventions for autistic adultsunderdiagnosis of autistic adults
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