A new three-year research initiative will combine cutting-edge analytical research with direct outreach to the autism community to recommend ways to improve the health of people living with autism.
Researchers at Oregon Health & Science University and partnering institutions received a three-year, $4.25 million federal award as part of a $50 million Autism Data Science Initiative launched by the National Institutes of Health in September.
Autism prevalence in the United States has increased from fewer than 1 in 2,000 children in the 1970s to about 1 in 31 today, according to the Centers for Disease Control and Prevention. It is a highly variable condition characterized by challenges in social communication and interaction along with restricted or repetitive patterns of behavior and interests.
People on the autism spectrum vary widely, but the OHSU-led research expects to leverage new analytic tools, including those powered by artificial intelligence, to discern patterns associated with positive health outcomes.
The initiative will focus on measures that make a meaningful difference in quality of life, whether it relates to preventative care, sleep, nutrition or particularly effective community support programs.
"We can't say every kid with autism is going to need the same thing," said co-principal investigator Katharine Zuckerman, M.D., professor of pediatrics in the OHSU School of Medicine.
Autism can vary based on sex, age, where a person lives, and severity of the condition.
"We're accounting for heterogeneity of the spectrum knowing that kids are very different," said co-principal investigator Olivia Lindly, Ph.D., associate professor of health sciences at Northern Arizona University. "We will account for that analytically so we're not just trying to generalize for everyone."
While many researchers are focused on finding the cause, Zuckerman said this line of research is focused on helping the people with autism in local communities, doctors' offices and hospitals right now.
"Finding out what causes autism is helpful for the future, but our project is focused on helping people right now," she said. "We're looking to find out what supports and what services do they need? What programs work and what don't? Autistic people, their parents and their caregivers have the right to know what works for them."
The research will make use of detailed datasets available through Medicaid claims data and nationwide surveys revealing outcomes for health and well-being. Once researchers have discerned notable signals in the vast array of data, they will involve autistic youths and their caregivers who were recruited to advise the project.
"Autistic people are valued members of our community here in Oregon and around the country, and OHSU researchers have been at the forefront of investigating important scientific questions that matter to these families," said OHSU President Shereef Elnahal, M.D., M.B.A. "We are excited that Dr. Zuckerman has been selected to be part of this important national initiative. Her team's research shows that, in addition to understanding the complex causes of autism, it is important to understand what works in helping families get their kids to the best outcomes."
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