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Joe Piven, MD, the Thomas E. Castelloe Distinguished Professor of Psychiatry, co-presented an overview of autism research in older populations before the US DHHS Interagency Autism Coordinating Committee.

Autism is often thought of as a condition of children. And it is. But kids grow up, and researchers have shed little light on the experiences of older individuals with autism, some of whom had only been diagnosed when one of their children was diagnosed with autism.

Joe Piven, MD, director of the Carolina Institute for Developmental Disabilities, has seen these anecdotes play out in real life, but, as he told Spectrum News magazine in 2015, these anecdotes are just the tip of the iceberg. He says many other older individuals with autism have struggled mightily throughout life without knowing they had autism and their voices having never been heard, especially those with more functional challenges.

From the Spectrum article: “For these reasons, what autism looks like in older adulthood, and what it means to age with autism, are still mysteries, says Piven. ‘We don’t have that concept with autism that people live a whole life: What happened to them as they got older? This is just a huge area [where we just have] no knowledge. There’s almost nothing written about autism in geriatric populations.’ So far, the few studies of older adults with autism suggest they suffer from myriad health conditions, [such as higher rates of Parkinson’s disease and dementia], and lack appropriate support. In studying [what has been described as a ‘lost generation’ of individuals who were never diagnosed with the condition,] Piven’s team and a few others are uncovering hints about the nature of aging with autism – along with some harrowing stories.”

This fall, Piven updated the U.S. Department of Health and Human Services (HHS) Interagency Autism Coordinating Committee (IACC), of which he’s a member, on what research has revealed since 2015. He presented with Marsha Mailick, PhD, the Vaughan Bascom and Elizabeth M. Boggs Professor & Emeritus Vice Chancellor for Research and Graduate Education at the University of Wisconsin.

In 2019, researchers documented that older adults with autism experience higher risk of various health conditions: gastrointestinal disorders (24%), hypertension (42%), diabetes (50%), obesity (69%), and sleep disorders (90%). Independent researchers found the same increases in separate studies in 2020 and 2021.

Piven and colleagues have also shown that midlife is a period of risk for adults with autism. Daily activity significantly declines as body mass and prescription medicine use increase. The researchers have yet to compare these trends to the general population, but separate studies have shown that adults with autism have a shorter lifespan on average, by about 20 years.

Piven said, “Moving forward, we need to include underserved and diverse populations in longitudinal cohort studies of midlife and older autistic adults.”

He and Mailick propose studying the effects of autism on aging, including age-related phenomena like stress, genetics, limited access to healthcare, and long-term use of several medications. They believe that the field needs to study how individuals with autism cope with aging-related loss and grief. And they hope researchers document multiple voices, including more adults with autism, as well as their family members, researchers, and policy makers.

“We have just begun to understand that aging in autism is a critically important area of study that urgently requires our attention,” Piven said. “This older life stage is likely to be as highly complex as earlier life stages of kids with autism – complexities on top of complexities.”

The IACC meeting was public and a video recording is available online. Drs. Piven and Mailick’s presentation begin at the 4:24:20 mark.

Contact: Mark Derewicz