Think tank explores the health and quality-of-life issues of aging adults with ASD and/or ID

A multinational, multidisciplinary think tank has published a report outlining priorities for enhancing the health and quality of life of older adults with autism spectrum disorders (ASD) and/or intellectual disabilities (ID).

Noting that the number of older adults with ASD and ID is growing rapidly, the think tank members say that “expanding capacity to meet their needs is crucial.” They point out that while there has been substantial research into the needs of a globally aging population, “the needs of those with autism and/or intellectual disabilities have been under-addressed in this research, as well as in practice and program advancement.”

The think tank participants comment, “Focusing on later life as a critically important yet under-addressed ‘age and stage’ in autism and intellectual disabilities invites evidence generation and proactive haction and change.”

The 57-member think tank, including individuals with autism, family members, researchers, health care providers, community support providers, advocates, and program planners, met in 2023 and published their report this June. The members outlined the following seven priorities:

1. Recognizing autism and intellectual disabilities as continuing aspects of the human lifespan, and investing in aging-based research, services, and supports focused on the needs of aging neurodivergent individuals.
2. Prioritizing the principle of “nothing about us without us” by ensuring that neurodivergent individuals are key contributors to initiatives in research, clinical and community care, and policy development.
3. Increasing the volume, depth, and quality of research into the issues of aging adults with ASD and/or ID.
4. Investing in aging with dignity, agency, and community, by improving care, housing, services, and socialization opportunities for aging individuals with ASD and/or ID.
5. Building integrated relationships and fostering collaboration among different sectors—for example, community planners, first responders, health and mental health providers, long-term care providers, and housing and transportation providers—to optimize services and encourage innovation.
6. Training health and mental health providers about neurodivergence and aging, to better serve this population.
7. Developing practices, protocols, tools, and policies to improve screening, diagnosis, and treatment of health issues in aging individuals with ASD and/or ID.

The think tank participants conclude, “Focusing on later life as a critically important yet under-addressed ‘age and stage’ in autism and intellectual disabilities invites evidence generation and proactive action and change.”

Citations

“Advancing care priorities for health and quality of life among older adults in the autism and/ or intellectual disabilities communities: proceedings of an international Think Tank,” David B. Nicholas, Fakhri Shafai, Stephen M. Edelson, Vanessa Bal, Hilary Nelson, Wenn Lawson, Mary Doherty, Hilde M. Geurts, William F. Sullivan, B. Blair Braden, Gregory L. Wallace, Maxine Share, Laura St. John, David G. Amaral, Agnes H. Whitaker, Lori Watters, Terri Robson, Joanne Gauthier, Sylvère Moulanier, Linda Perry, Sandy Stemp, Ellen Wilkinson, Nancy Jokinen, Margaret L. Bauman, Robert Hendren, Evdokia Anagnostou, and Julian N. Trollor, BMC Proceedings, June 16, 2025. Address: David B. Nicholas, Faculty of Social Work, Central and Northern Alberta Region, University of Calgary, Edmonton, Canada, [email protected].

Editor’s note: The Autism Research Institute co-sponsored this think tank, in which I participated along with board members Dr. Wenn Lawson, Dr. Margaret Bauman, and Dr. Robert Hendren.