Northern Arizona University is significantly involved in a new research initiative aimed at improving the health and quality of life for individuals with autism, funded by the National Institutes of Health (NIH). Dr. Olivia Lindly, an associate professor of health sciences at NAU”s Center for Community Health and Engaged Research (CHER), serves as co-principal investigator on this ambitious three-year, $4.25 million project, which is led by Oregon Health & Science University (OHSU).
This initiative is part of the NIH”s broader $50 million Autism Data Science Initiative, which was launched in September. Other key collaborators from NAU include Benjamin Lucas, an assistant professor of mathematics and statistics, and David Folch, chair and associate professor in the Department of Geography, Planning, and Recreation.
Children diagnosed with autism often face significant challenges in healthcare quality and experience unmet needs that are among the highest for any chronic pediatric condition. Disparities in service utilization and long-term health outcomes continue to affect this population. Researchers have identified a lack of clarity regarding the health outcomes that are most critical to children with autism and their families, and there have been few comprehensive studies investigating the various factors influencing health outcomes, including individual, family, service, and community dynamics.
The goal of this study is to bridge these gaps by integrating advanced data science methods with the insights of autistic individuals and their caregivers. The research team will employ a community-engaged approach, placing emphasis on the perspectives of those who have historically been marginalized in research discussions to better define relevant health outcomes.
Dr. Janelle Chiasera, dean of NAU”s College of Health and Human Services, remarked, “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. NAU is honored to help lead a project that will strengthen health outcomes and make a lasting difference for families nationwide.”
The project will scrutinize various large datasets, including Medicaid claims and national surveys, to uncover predictors of favorable health outcomes in areas such as preventive care, sleep, nutrition, and availability of effective community support. Contributions from youths and their caregivers will be instrumental in interpreting the findings and guiding recommendations.
Dr. Lindly stated, “Autism is highly variable, and every child”s needs can look very different. We will account for that heterogeneity analytically so that we are not generalizing for everyone.” The overarching aim is to generate evidence-based insights and actionable steps for healthcare providers, policymakers, and communities to enhance outcomes for individuals on the autism spectrum.
“This project is focused on helping families by finding out what supports and services work best,” Lindly added. “People with autism, their parents, and their caregivers deserve to know what programs are most effective for them.”
Support for the project also comes from OHSU co-principal investigators Dr. Katharine Zuckerman, a professor of pediatrics at the OHSU School of Medicine, and Margaret Gillis, an education researcher at SRI International. Zuckerman highlighted the importance of the project”s focus on immediate practical benefits. “Finding out what causes autism is helpful for the future, but our project is focused on helping people right now,” she noted. “We are looking to find out what supports and services families need, which programs work and which do not.”
