By Dawn Brazell
Public Relations

Speaking to a packed house at the Autism Spectrum Disorder Scientific Meeting, keynote speaker Lorri Shealy Unumb warned researchers and clinicians that there's a huge autism tsunami getting ready to hit the state.

In many ways, she was preaching to the choir.

Keynote speaker Lorri Shealy Unumb of the advocacy group Autism Speaks addresses the more than 70 researchers and clinicians gathered for the Nov. 9 Autism Spectrum Disorder Scientific Meeting.

MUSC hosted Nov. 9 the first scientific meeting of autism researchers in the state. The meeting, held in Gazes Auditorium, was sponsored by the South Carolina Clinical and Translation Research Institute (SCTR), the MUSC Autism Strategic Planning Committee and a grant from the S.C. Developmental Disabilities Council.

The meeting, which included an overview of the SCTR Pilot Project Program by Perry Halushka, Ph.D., dean of the College of Graduate Studies, featured 17 presentations by autism researchers from Clemson University, Furman University, Greenville Children's Hospital, Greenwood Genetics Center, University of South Carolina, and the departments of pediatrics, psychiatry and neurosciences at MUSC.

Unumb, an attorney and vice president for state government affairs for the advocacy group Autism Speaks, thanked the researchers, clinicians and advocates in attendance for helping address the growing numbers of people affected by autism. Autism affects one in 110 children and one in 70 boys.

"We need to educate the medical community. We still see a lot of pediatricians who don't know what it is or who see signs and don't act on it right away."

Unumb's keynote address titled "What a Parent Wants from Autism Research" praised research efforts being made, adding that parents desperately are seeking the most effective treatments and need a clear course of action that is not experimental.

Her son, Ryan, who is now 10, was diagnosed with autism at 22 months of age with medical professionals giving her no direction about the next best course of action. "It was basically, 'Good luck with that.'"

Even today, many medical professionals are not comfortable recommending a course of treatment, with part of that reluctance based on the unavailability of insurance coverage for certain treatments. "The insurance companies are waiting to see if the autism community is ready to fight back, and right now we're not."

She's working to change that. Unumb got into the autism insurance reform movement as she encountered struggles in getting treatments funded for Ryan. She wrote ground-breaking autism insurance legislation for South Carolina called "Ryan's Law" that passed in 2007 and served as a catalyst for the national movement toward autism insurance reform. Legislative advocacy work by Autism Speaks is making headway, but there's still significant resistance from legislators who don't understand autism spectrum disorder.

There also is a need for more research that provides evidence-based treatments. Unumb said she can't overestimate the importance to parents of research being done. "I love looking at the agenda and seeing all the exciting research you're doing today," she said. "I implore you to give us studies on older children and adults, too."

Walter Jenner, a member of the Autism and Developmental Disabilities Monitoring Program with the division of developmental pediatrics, said the meeting was a huge success with organizers getting a favorable response. Autism prevalence has increased rapidly during the last two decades from one in 1,000 to one in 100. There is no absolute known cause although strong evidence exists for genetic determinants and possible environmental triggers, he said.

"This was the first scientific meeting to gather South Carolina researchers together to further research efforts in autism spectrum disorders."

At the end of September, Congress passed the Combating Autism Reauthorization Act promising $231 million a year for the next three years for autism research, screening, education and treatment. "The objective was to stimulate new collaborative research projects among clinical and basic science researchers, other health professional researchers and the community that would lead to productive pre-clinical, clinical or translational research."

One of the research presenters, Laura Arnstein Carpenter, Ph.D., associate professor of pediatrics, said the scientific meeting was an amazing experience.

"There are so many interesting research endeavors related to autism taking place right here in South Carolina, from animal research to clinical trials to epidemiology to imaging. I really was struck by the range of activities and by the expertise of the group as a whole. This type of meeting is helpful for connecting basic and clinical researchers to encourage meaningful translational research."

For more information on Autism Speaks, visit http://www.autismspeaks.org/.

For more information on SCTR, visit https://sctr.musc.edu/.