Northern Arizona University is playing a key role in a new nationwide research initiative funded by the National Institutes of Health to improve health and quality of life for people with autism.
Olivia Lindly, an associate professor of health sciences in NAU’s Center for Community Health and Engaged Research (CHER), is co-principal investigator on a three-year, $4.25 million project led by Oregon Health & Science University (OHSU). The award is part of the NIH’s $50 million Autism Data Science Initiative, launched in September. Other NAU co-investigators include Benjamin Lucas, assistant professor of mathematics and statistics, and David Folch, chair and associate professor in the Department of Geography, Planning, and Recreation.
Children on the autism spectrum experience some of the lowest healthcare quality and most unmet needs of any pediatric chronic condition. Disparities also persist in service use and long-term health outcomes among people with autism. Researchers note that these problems exist because outcomes most essential to children with autism and their caregivers have not been adequately defined, and few large-scale studies have examined the individual, family, service and community-level factors that predict health outcomes.
This study aims to close those gaps by combining cutting-edge data science methodologies with the lived expertise of autistic people and their caregivers. Using a community-engaged approach, the research team will center the voices of people who have historically been excluded from research conversations to define meaningful health outcomes.
“This funding marks a powerful step forward in ensuring that children with autism and their caregivers have equitable access to the high-quality care they need and deserve,” said Janelle Chiasera, dean of NAU’s College of Health and Human Services. “NAU is honored to help lead a project that will strengthen health outcomes and make a lasting difference for families nationwide.”
The project will analyze multiple large datasets, including Medicaid claims and national surveys, to identify predictors of positive health outcomes related to preventive care, sleep, nutrition and access to effective community support. Input from youth and their caregivers will guide interpretation of findings and shape recommendations.
“Autism is highly variable, and every child’s needs can look very different,” Lindly said. “We will account for that heterogeneity analytically so that we are not generalizing for everyone.”
The long-term goal is to provide evidence-based answers and clear action steps that healthcare providers, policymakers and communities can use to improve outcomes for autistic individuals.
“This project is focused on helping families by finding out what supports and services work best,” Lindly said. “People with autism, their parents and their caregivers deserve to know what programs are most effective for them.”
The project is supported by OHSU co-principal investigators Dr. Katharine Zuckerman, professor of pediatrics in the OHSU School of Medicine, and Margaret Gillis, an education researcher at SRI International.
Zuckerman emphasized the project’s focus on practical impact. “Finding out what causes autism is helpful for the future, but our project is focused on helping people right now,” Zuckerman said. “We are looking to find out what supports and services families need, which programs work and which do not.”