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Looking at Aging and Autism
by Saci Carr, Ph.D
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In late 2015 a New York Times contributor with an aging brother with autism spectrum disorder wrote that there: In Richmond, this discussion occurs daily at “A Grace Place.” Through family discussions or record analysis, Karen Webb, A Grace Place’s chief operating officer, strives to better understand older adults with autism spectrum disorder. However, while her individualized and therapeutic approach has yielded some successes, it became clear to Karen that more perspectives would be needed to make the changes she wished to see at her organization.
Meanwhile, at Virginia Commonwealth University (VCU), faculty in the Department of Gerontology, as well as the Rehabilitation Research and Training Center (RRTC) were asking questions that aligned with daily experiences at A Grace Place. Their respective fields had yet to develop any foundational knowledge about middle-aged and older adults with autism spectrum disorder. They wanted to look to the community of practitioners to understand current, pragmatic discussions about supporting adults with autism spectrum disorder. In October, 2015, Drs. Carr, Gendron, and Prohn reached out to Karen Webb and A Grace Place to expand their understanding of this issue.
A partnership began to emerge from the identified mutual need and a shared problem: the absence of clear, systematically rendered practices for appropriately and respectfully serving and supporting older
adults with autism spectrum disorder. With a prevalence rate higher than that of Down Syndrome and Cerebral Palsy combined, individuals with autism spectrum disorder are reaching adulthood in great numbers. Individuals with autism spectrum disorder often require supports throughout their lifespan. These challenges compel us to join as partners and construct a pathway that will lead to research- guided practices best supporting the needs of (older) adults with autism spectrum disorder. The VCU Department of Gerontology, the RRTC, and A Grace Place are unified by similar practices and hope tocontribute to the solution to their common problem.
Just like all individuals, individuals with autism spectrum disorder are not static. Impairments have been shown to shift longitudinally, both improving and declining across time. As partners, the Department of Gerontology, the RRTC, and A Grace Place are guided by a belief in the capacity for neurological, social and emotional plasticity over the lifespan. Such development requires a host of contextual changes to care, staff practices, and client opportunities. The physical environment will also need restructuring. It is the hypothesis of these three entities that by restructuring the environment and providing sensory conscious activities and materials, engagement will increase and the impact of stress on this group of individuals will decrease, which would lead to a better quality of life. While these partners continue to develop research plans, and secure funding, they are excited at the potential for this work to fill a gap in both research and practice.