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Upstate expert part of major study on defining standard of care for people with autism

An Upstate professor of pediatrics has been awarded a grant that could help define the standard of care across the country–and possibly the world–for behavior interventions for people with autism.

Henry Roane, PhD, division chief of the Center for Development, Behavior and Genetics at Upstate and the executive director for the Golisano Center for Special Needs, is among a team of four experts that received a grant from Autism Speaks to work toward improving care for autistic people experiencing severe behavioral challenges.

Currently, no large-scale studies have evaluated a clinical framework to assess and treat behavioral issues in autistic children and adults. 

Roane will work with Wayne Fisher, PhD, BCBA-D, from Robert Wood Johnson Medical School; Matthew Siegal, MD, Maine Behavioral Health Care; and Eric Butter, PhD, Nationwide Children’s Hospital. 

“It really has the potential to define the care for this population, so we are super excited about it,” Roane said. “It’s a really interesting opportunity. And for Upstate it is a good opportunity because it aligns us with other really well-known centers around the country.”

Children and adults with autism can struggle with disruptive behaviors that put themselves or others at risk. Research shows that one-third of children with Autism Spectrum Disorder experience self-harming behaviors and that more than half of autistic children and teens have been physically aggressive toward others. These behaviors often are the result of difficulty communicating, scenery overwhelm, stress or anxiety. Roane says children who exhibit these behaviors typically don’t have language or self-help skills. 

“These behaviors are things that really prevent children from achieving their potential,” Roane said. 

Roane said the award is a planning grant designed to synthesize current information in two ways.

The first is to put together the current state of practices around challenging behavior, from what’s happening in schools to pediatrician offices to specialized clinics. 

“No one has quantified that to date,” Roane said. “That’s aim number one. What is the standard of care right now?”

The second goal is to analyze the literature, including outcome data, to determine the best course of treatment for these problem behaviors. Roane said there are many case studies involving individuals, but no one has looked at applying the best practices of scientific inquiry to determine what is most effective.

“More specifically, this level of care, specific for whom and delivered at what dosage,” he said. “Those questions have not been answered yet.”

Once those two aims are met, Roane said, the research group will have a solid basis for a follow up study with a large-scale randomized clinical trial, which has never been done with this population.

“That’s the gold standard for intervention research,” Roane said. 

Once this pathway to care is established, it could have wide-spread and meaningful applications. 

“You develop a standard of care that’s the model to use for any condition, in this case challenging behavior,” Roane said. “By creating a method like this, if you are in Boise or in Syracuse, the model of care exists for how you treat this kind of problem. That’s really significant. That takes out a lot of variability and it allows children to receive care that’s informed by science.”

It also answers questions about the role of stakeholders involved in the care. Is there specialized training needed? What should the role of the school be? Of parents?

“That’s where you can start to get replication across sites and impact care on a national and hopefully worldwide basis,” he said.

Roane said he and one of the other researchers have been working together with Autism Speaks for the past 18 months on these same issues and they put together a two-day virtual conference that brought together many different stakeholders. When Autism Speaks put out a call for research proposals, they jumped on it and won one of two grants totaling $600,000 that the organization just awarded

“The department of pediatrics, the Upstate Foundation, the President’s office and the hospital have been extremely supportive in these efforts, in our research over the years and our clinical work. It’s just really nice to be able to do something like this, not just for the upstate New York community and our institution, but to leverage that support to develop something that’s going to have a potential wide-reaching impact on a lot of children. That support is very much appreciated.”