A researcher can’t ask for much more than to hear they’ve won a $4.25 million federal grant. But with a national microscope trained on the Trump administration’s controversial autism agenda, Dr. Katie Zuckerman acknowledges she received the good news at an unusual time.

The pediatrician and Harvard Medical School grad says the three-year, OHSU-led project she’s about to launch using funds from the National Institutes of Health is about as non-controversial as it gets. It’s about helping families living with autism.

“I think that we don’t have enough information on what really works in autism,” she told The Lund Report. “We also don’t have enough information about what autistic people or their caregivers think is success.”

Using the grant, Zuckerman will work with colleagues at Northern Arizona University and SRI — formerly known as Stanford Research Institute — to harness data in a way that she said hasn’t been done before.

They will work with children on the autism spectrum and their families to determine their health priorities, and then delve into massive national data sets — ranging from Medicaid claims to the mapping-based Child Opportunity Index and the National Survey of Children’s Health.

They intend to determine which policies and programs are the most helpful to achieve the sort of good health goals that affected families want.

And that might seem simple, but it’s not.

“Our system of care for children with autism or who have other developmental disabilities is exceedingly complex,” Zuckerman said. “Parents have to navigate specialists both in the medical and the educational settings. There’s a huge amount of bureaucratic paperwork and barriers involved, insurance problems … there can be geographic or transportation barriers or child care barriers.”

Some scientists had been concerned by the Trump administration’s announcement of an autism science initiative. But the vast majority of the initiative’s funding announced late last month went to projects considered highly credible, according to news accounts.

“This is all very serious, forward-looking, exciting, rigorous, gold-standard science,” Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, told the New York Times,

Said Zuckerman wryly, “My project is probably the least controversial of all the projects.”

Autism diagnoses have climbed

The per-capita rate of diagnoses of people considered to be on the autism spectrum has skyrocketed over the years. In the 1970s the reported prevalence was fewer than 1 in 2,000 children but now is about 1 in 31 kids today, according to federal data cited by OHSU.

Experts say that better understanding and awareness, as well as an expanded definition of what it means to be on the autism spectrum, has fueled the growth in diagnoses.

Autism is “a highly variable condition characterized by challenges in social communication and interaction along with restricted or repetitive patterns of behavior and interests,” according to the university’s announcement of Zuckerman’s grant award.

But the growth in diagnoses has also been cited by vaccine skeptics to highlight a discredited claim of a connection to vaccine ingredients.

These days, one of those skeptics lives in the White House. He appointed another, Robert F. Kennedy, Jr., to be the U.S. Secretary of Health and Human Services.

“I think a lot of people are having a conversation right now about what causes autism,” Zuckerman said. “And that’s not the conversation that I’m having.”

Pediatric care drives work

Zuckerman works on Marquam Hill at Doernbecher Children’s Hospital, specializing in care for kids on the autism spectrum. That’s what drives her research — how to provide the best resources for families and for policymakers.

“I see this in my office every day, that families are struggling to get high quality care for their kids. The whole goal of my research is to try to figure out how we can make that easier,” she told The Lund Report. “It’s not theoretical to me. It’s the kids and families who are sitting in front of me every day.”

While experts might consider certain health outcomes important, families living with autism might have different priorities, she said.

“Based on my experiences of primary care, a lot of parents would say, ‘Well, we really care about sleep,’ or ‘We really care about our child being able to go to a restaurant and eat something from the menu,’” she said. “So maybe the outcomes that we’re all looking at in the autism field … aren’t what’s most important to families.”

They will rely on an advisory panel of youth and adults with autism as well as educational providers and community support workers to guide their work.

Zuckerman is passionate about figuring out how to help people have access to quality care. She’s done study after study and thinks of them like building “a brick wall where I keep putting in the bricks.”

She’s done research into the challenges of home care, and provided testimony to the Legislature in support of an effort to have the state pay parent caregivers just as it does professional caregivers — who, parents say, may not do as good a job.

“Parenting an autistic child can be a full-time job and also requires quite a lot of research,” Zuckerman said.

She hopes the study will reduce that load.

Funding will keep science going in Oregon and elsewhere

Zuckerman said she feels lucky to work with a top-notch team including health sciences data science expert Olivia Lindly in Arizona as well as Margaret Gillis, an expert in early intervention at SRI.

The Oregon doctor is also conscious of her good fortune of winning a grant at a time when many researchers are having their funding cut by the Trump administration.

“I think it’s really hard being a researcher right now,” she said. “The funding environment’s gotten really challenging. A lot of people’s funding has gotten cut, and that’s a lot of people’s jobs here in Oregon. And my research lab hasn’t been immune to any of this.”

NIH funding, she said, helps keep “a really skilled scientific workforce here, not just at OHSU, but around the state ... I think it’s really important for the future of our field that we continue to have science funding so that we can train the next generation of scientists.”

This republished story is part of OPB’s broader effort to ensure that everyone in our region has access to quality journalism that informs, entertains and enriches their lives. To learn more, visit opb.org/partnerships.

News Source : https://www.opb.org/article/2025/10/03/ohsu-oregon-health-science-university-grant-autism-research-unusual-time/