Editorial: Navigating New Territory – The Growing Focus on Autistic Seniors

Contributors (listed in alphabetical order)

Vanessa H. Bal, Ph.D., Graduate School of Applied & Professional Psychology, Rutgers University; Margaret L. Bauman, M.D., Associate Professor of Anatomy and Laboratory Medicine, Boston University School of Medicine; Mary Doherty, M.D., Clinical Associate Professor, University College Dublin School of Medicine; Stephen M. Edelson, Ph.D., Autism Research Institute, San Diego, CA; Dena L. Gassner, Ph.D. (c), Senior Research Scientist, AJ Drexel Autism Institute: Drexel University; Robert L Hendren, DO, Professor of Psychiatry Emeritus, UCSF, Autism Research Institute; Wenn Lawson, Ph.D., A/Prof, Curtin University, Western Australia; David B. Nicholas, Ph.D., Faculty of Social Work, University of Calgary; Christopher Palmer, M.Sc., Commission for the Rights of Persons with Disability, Malta; Gaetano Alistair Savour, Ph.D., Chairperson, Autism Advisory Council, Ministry for Inclusion and the Voluntary Sector, Malta; Fakhri Shafai, Ph.D., AIDE Canada, Richmond, BC

For many years, the autism community focused nearly all of its attention on the needs of children and adolescents. As the prevalence of pediatric autism diagnoses has increased over the past three decades, researchers and service providers have broadened their focus to include the needs of individuals transitioning to adulthood and young adults. Today, there is increasing recognition of the importance of supporting autistic individuals throughout the entire lifespan, including old age.

In a 2017 report to Congress, the U.S. Department of Health and Human Services estimated that approximately 50,000 autistic youth are expected to transition into adulthood each year in the United States. Over the coming decades, a growing wave of these individuals will be entering later adulthood. Medicaid enrollment data has shown a steady increase in service use for this group.

The issue of aging in autism began to gain attention about a decade ago, and continues to grow in importance as rising numbers of autistic individuals age into their senior years. Prominent autistic individuals who are now over 60 years of age—including Temple Grandin, Stephen Shore, John Elder Robison, Wenn Lawson, Cos Michael, and Mark Rimland, the son of Dr. Bernard Rimland—highlight the relevance of this issue.

Some of the needs of autistic seniors, such as the requirement for appropriate living arrangements and good health care, appear straightforward. However, many less-obvious challenges are becoming clear as we are now hearing from autistic individuals approaching their senior years as well as from clinical and community researchers who are studying aging.

To explore these challenges, a dedicated group of autistic individuals and researchers has been meeting nearly monthly for approximately five years to discuss aging-related issues. This group has organized two major think tanks, resulting in published articles discussing their findings and conclusions (Edelson et al., 2023; Nicholas et al., 2025).

This group is currently planning a third think tank meeting at the United Nations, scheduled for next month (October 3, 2025). In preparation for this upcoming event, several additional autistic individuals have joined the planning committee to help determine important topics for discussion.

Recently, during one of their planning meetings, I was struck by the sheer number and complexity of senior-related issues identified by participants. To help prioritize these topics for the upcoming U.N. think tank, I asked the participants to rank these topics based on their perceived importance.

As the result of this ranking, the identified topics have been grouped under five key areas:

In the area of Physical and Mental Health in Aging, participants noted concerns related to dementia, Parkinson’s disease, extrapyramidal symptoms, and other age-related medical conditions (e.g., cancer, cardiac disease, stroke). They also stressed the importance of understanding the impact of medications on aging autistic individuals and exploring implications of hypermobility in older autistic adults (for example, those with Ehlers-Danlos syndrome). The broader spectrum of physical and mental health challenges associated with aging was recognized as posing concerns requiring urgent attention.

Regarding Healthcare Access, Navigation, and Delivery, participants highlighted menopause as an area in which there are significant unmet healthcare needs. They also emphasized the importance of making healthcare systems easier to navigate and reducing administrative burdens and bureaucratic barriers. Additionally, there was considerable concern about addressing the needs of autistic seniors requiring long-term care or acute medical treatment, including issues involving hospital admissions. Preparing autistic adults to communicate effectively with healthcare providers during medical visits was also identified as a critical area, along with addressing sensory sensitivities and nutritional needs in outpatient surgery units, long-term care facilities, and other healthcare environments. Participants noted that differences in sensory processing, communication, and stress response among autistic individuals may complicate the recognition and treatment of age-related health conditions, often leading to misdiagnosis or delayed care. They also stressed that autistic individuals should receive routine preventive care, including colonoscopies, prostate screening, and mammograms. Tailored clinical approaches that account for neurodivergent aging trajectories are urgently needed.

In the domain of Community, Autonomy, and Daily Life, the benefits of receiving a late autism diagnosis and self-recognition in older adults were highlighted. Community living options, regular health screenings, and protection from financial vulnerability were viewed as crucial for maintaining autonomy and quality of life. Participants noted the importance of supporting autistic individuals’ rights and legal capacity, while examining mechanisms such as guardianship and newer avenues such as supported decision-making and co-decision-making. Additionally, loneliness, social isolation, and parenting challenges faced by aging autistic adults—particularly those diagnosed later in life—were identified as vital areas of concern.

Social Determinants of Health and Discrimination also emerged as critical issues, with contributors expressing deep concern about ableism, ageism, housing insecurity, retirement, and forced retirement. Intersectionality, especially involving LGBTQIA+ and other multi-marginalized identities, was underscored as needing more focused attention. Participants also suggested learning from other sectors, such as the LGBTQIA+ community, in order to better address systemic issues.

Finally, End-of-Life and Palliative Care was recognized as an essential area needing more comprehensive planning and support. Participants emphasized the importance of respectful and informed end-of-life decision-making and palliative care tailored specifically for autistic individuals, including making clear and accessible communication readily available.

The richness and complexity of the issues discussed illuminate an undeniable reality: Proactive engagement and systemic preparation are vital. Addressing these topics not only will aid autistic adults in navigating their later years but also will help to build an essential framework for policymakers, caregivers, support persons, healthcare providers, and society at large. Enhanced research, informed policy development, and dedicated resources will ensure that autistic seniors can live with dignity, autonomy, and comprehensive support. Critical to this aim is the key role and contribution of autistic people themselves in determining their priorities and what is needed in their middle and later years.

It is crucial that ongoing dialogues and forthcoming initiatives foster increased awareness among autistic individuals, families, support networks, healthcare practitioners, and policymakers. Collectively, these collaborative efforts can drive meaningful changes in both practice and policy, ultimately creating a world where autistic seniors can thrive throughout their aging process.

Although awareness of the needs of the aging autistic community is increasing, the time for action is now. We must seize this momentum to ensure that autistic seniors experience the highest possible quality of life, made possible by informed, compassionate care, oversight, and support and a well-designed infrastructure capable of meeting their evolving needs.

References available at www.ARRIReferences.org.

This editorial originally appeared in Autism Research Review International, Vol. 39, No. 3, 2025