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Autism Awareness Month: UNC research center seeks to make big impact with collaborative effort

Posted April 7, 2019 9:15 a.m. EDT

The Morehead Planetarium and Science Center building is lit up in light blue on the University of North Carolina at Chapel Hill campus in support of Autism Awareness Day on April 2, 2018. (Johnny Andrews / UNC-Chapel Hill)

— April is Autism Awareness Month, part of an international effort to raise awareness and funding for autism research and support.

The UNC Autism Research Center at UNC-Chapel Hill is one of many groups working on events and programs this month to get the word out about its efforts and how we can support them.

On Tuesday, April 9, various spots in Chapel Hill, including Morehead Planetarium and Science Center and the Carolina Inn, will light up blue to show their support as the research center seeks donations for its work.

I checked in with Allison Zoller, the center's project manager, and Dr. Joseph Piven, director of the UNC Carolina Institute for Developmental Disabilities, to learn more about the research center and how it's working to help those on the autism spectrum and their families.

What is the UNC Autism Research Center?

For years, researchers at UNC have studied autism, and others have taken notice. Several years ago, when the federal government issued a report on what universities around the world were producing the most papers about autism, UNC ranked No. 2, Piven said.

"It really sort of started becoming evident that we were one of the leaders in autism research in the country and in the world," Piven said.

Today, as many as 40 researchers at UNC are thinking about autism, Piven said, from basic scientists who are looking at genes to those like Piven who are studying the brain and behavior.

It made sense to pull those efforts all together into a single center where UNC scientists can collaborate. The center opened a couple of years ago.

"In order to really move the needle, we need to have a real integration across the disciplines," Piven said. "The goal ... is to find the right treatment at the right time for a certain individual. And we think by understanding all the parts of this elephant that that's a way we can end up really moving the needle. We have all the pieces to be able to do that."

Why is this such a critical issue?

First, one in 58 North Carolinians are on the autism spectrum. But it's more than that, Zoller and Piven said.

Autism services cost U.S. citizens as much as $262 billion each year. The cost of lifelong care can be reduced by as much as two-thirds with early diagnosis and intervention, according to the Autism Society.

"We're seeing this as a major public health issue," Piven said. "The reason to do this is that our interventions are really modest impact at best. We treat most kids with autism the same, regardless of how they got autism. ... We need to find something more fundamental."

Said Zoller: "Whether we realize it or not, to some degree, it impacts all of us, not just the families who are dealing with this."

What are researchers working on at the center now?

UNC researchers have ongoing studies that aim to answer questions about autism from birth to old age. Here are examples of just a few.

Diagnosing babies who may get autism

Piven is working on a study that could help to identify children who will eventually be diagnosed with autism when they are still babies.

"Autism unfolds in the second or third year of life," he said. "They start developing more and more features until they get diagnosed."

Now, thanks to research at UNC, when looking at brain scans of babies who have siblings with autism, Piven can predict eight out of 10 times, which baby will eventually develop autism.

"If this finding holds up, it can really transform our way of thinking about autism," he said. "We would be able to start some interventions with those children even before autism develops and it's at a time when the brain is most plastic and malleable. ... We might be able to have a test that predicts who might get autism, and that changes things."

UNC now will work with five other universities to broaden the study and test the early results.

Finding links

Other research focuses on children who have a syndrome, which shares similarities with autism. Angelman Syndrome is caused when a single gene has gone awry.

"Those particular genes are very rare," Piven said. "We can really understand a lot about the cause of autism by studying that gene and those children."

At UNC, researchers currently are looking at the gene in mice, Piven said. With further research and trials, "we may be able to fix that gene and fix it very early on," he said.

Helping older adults on the spectrum

The UNC TEACCH Autism Program started in the 1960s and, by now, many of the original children who received services through the program are in their 50s, 60s or older.

"We've begun to start studying that group," Piven said. "... We know nothing about older age and autism. We have no idea of the unique issues that are going to come up for them. We don't have a trained workforce. ... We, at UNC, are one of the few sites" with an interest in studying older adults with autism.

Find more information about the center and its research on its website.