By Emily Leclerc, Waisman Science Writer
* Note: Both Lauren Bishop’s lab and Brittany Hand’s lab prefer to use identity-first language in response to the growing shift in the autism community toward using identity-first vs. people-first language. The language used in this story will reflect that choice. *
A new study from researchers at the Waisman Center and The Ohio State University will investigate aging in autistic adults. The study is led by Lauren Bishop, PhD, MSW, Waisman investigator and associate professor in the Sandra Rosenbaum School of Social Work, and Brittany Hand, PhD, OTR/L, associate professor in the School of Health and Rehabilitation Sciences at The Ohio State University. As part of the study the researchers will develop an algorithm to identify what health conditions may impact older autistic adults. The algorithm will also be used to identify autistic individuals at higher risk of early mortality. “The research to support autistic people as they age into and through adulthood has really lagged behind the pediatric research,” Hand says.
The overarching goal of Bishop’s and Hand’s grant is to facilitate the development of an algorithm that will allow research and healthcare settings to better identify older autistic individuals who are at high risk for negative health outcomes and early mortality. “We are using a national Medicare data set to study how co-occurring conditions are linked to early mortality in older autistic adults. The project is a methodological innovation in the sense that we’re developing this new type of algorithm for health services research but it is also something that should hopefully improve patient care for older autistic adults in the long-term,” Bishop says.
The grant has two main goals and an exploratory one. The first is to use machine learning techniques to comb through the last nine years of Medicare data to determine which conditions or combinations of conditions influence mortality risk in aging autistic adults. “A big part of the grant is learning what specific health conditions among older autistic adults are more likely to lead to premature mortality,” Hand says.
Goal two builds upon the first to then use that gathered information to build an algorithm-based index that can accurately identify individuals at high risk of poor aging outcomes. The third goal, which is exploratory, is to then test the algorithm in healthcare systems at the University of Wisconsin-Madison and The Ohio State University.
The importance of this algorithm rests in the potential it has to help identify autistic older adults at high risk of premature mortality to better target healthcare interventions and supportive services so that autistic people can live long, healthy lives. Many chronic age-related conditions can be mitigated or prevented if caught and treated early. “It leads to the potential for specialized treatment and more work into how we develop specialized treatments that can help prevent the progression or onset of chronic health problems,” Bishop says.
A particular advantage of this grant is Bishop and Hand’s decision to utilize Medicare data. It comes with several benefits. The first is that they do not need to collect any data. Medicare data is already available for use in research. “The other really great thing is that it represents a full-service system within the United States. So, what we do is going to be fully generalizable to all of the individuals who are identified as autistic within the Medicare service system,” Bishop says. This would include all autistic individuals in the system across race, ethnicity, and socioeconomic status, making the dataset more representative of the general population.
For Hand and Bishop, this grant represents their first foray into an area of research they hope to dedicate much more time to. “We are hoping this is the first step in a line of work that is focused on maximizing longevity of life and quality of life among older autistic adults,” Hand says. “We’re hoping that an algorithm like this can be integrated into our healthcare systems and used to help healthcare providers flag which of their patients might need more tailored support or to be more connected with community resources.”
In the future, Bishop and Hand hope to use this work and related work to more broadly influence healthcare policy. “Later on, we can look at if we knew more about somebody’s risk for co-occurring conditions or for early mortality, would we be able to intervene earlier? Would that then change the outcomes that we see?” Bishop asks. They are hopeful that in the long-term, their algorithm could be used to make it easier for autistic people to qualify for Medicare.
While this grant is just the beginning of an important line of research for Hand and Bishop, it can also set the stage for the Waisman Center to become an integral part of geriatric autism research. The field is new and emerging with ample space for centers like Waisman to take the lead. “To the best of my knowledge, this is one of the first grants that the National Institutes of Aging has funded that is focused on autism. I think Waisman is likely well-poised to be at the forefront of the geriatric autism field,” Bishop says. “The first person diagnosed with autism passed away this summer and we know very little about what the full life course looks like for autistic people. This grant can help shed some light on one aspect of the full life course.”
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