University Hosts First-Ever Autism Speaks Action Summit

House Majority Leader Eric Cantor, B.A. ’85, and Professor Lorri Unumb advocate for autism-related legislation.
Eric Cantor
House Majority Leader Eric Cantor, B.A. ’85, speaks about the Kids First Research Act—a bill that puts taxpayer funding into scientific research of pediatric diseases and disorders—during the Autism Speaks Action Summit on Wednesday.
November 17, 2013

By Lauren Ingeno

When her two-year-old son, Ryan, was diagnosed with autism spectrum disorder in 2003, doctors told Lorri Unumb that he should undergo applied behavior analysis—an intensive, one-on-one therapy for 40 hours per week.

“I remember crying when they told me that. I thought, 40 hours per week? He’s a little kid; that’s a full-time job,” said Ms. Unumb, an adjunct professor in the George Washington University School of Law and Autism Speaks vice president for state government affairs.

But she and her husband faced a much bigger setback when they learned their health insurance would not cover a penny of the $70,000 treatment. They sold their house, and Ms. Unumb sacrificed a year’s salary to pay for Ryan’s therapy.

Still, they knew they were lucky. Ms. Unumb wondered what less fortunate parents would do if they were in her situation. Being “naive enough” to not know how difficult it would be to pass a piece of legislation, she sat down at her kitchen table and wrote a bill that said insurance policies must provide coverage for the treatment of autism.

It was not an easy journey, but that naiveté eventually paid off—Ryan’s Law was passed in South Carolina in 2007. Five years later, similar versions of the autism insurance reform law have been enacted in 34 states, and she is still fighting to pass it in all 50. She currently teaches “Autism and the Law” at GW—the only law course of its kind in the country.

Ms. Unumb’s story served as a source of hope and inspiration for the members of Congress, governors, scientists, policy experts and activists who attended the first-ever Autism Speaks national policy and action summit, hosted by the George Washington University’s Autism and Neurodevelopmental Disorders (AND) Initiative on Wednesday in the Jack Morton Auditorium.

Autism Speaks, which was founded in 2005 and recruited Ms. Unumb in 2008, is the world’s leading autism science and advocacy organization. The GW Autism and Neurodevelopmental Disorders Initiative was formed in 2010 to provide assessments, interventions, medical treatments and support services related to autism and neurodevelopmental disorders.

Last week’s summit was “a call to action,” where stakeholders from around the country, including House Majority Leader Eric Cantor, R-Va., B.A. ‘85 as well as Autism Speaks founders Suzanne and Bob Wright, convened to focus on a national strategy on autism,

While Ms. Unumb has made significant progress in passing insurance reform laws throughout the country—whether a family’s insurance will cover autism treatment is still largely “a game of chance,” she said at the summit.

That is why speakers stressed the need for federal legislation regarding autism. And that legislation must include research funding, said Rep. Cantor in his keynote speech.

Rep. Cantor explained that he became involved in autism advocacy when the son of a single mother on his staff was diagnosed with the disorder, and he watched the many challenges she faced.

“What more of a priority for the federal government than to provide a platform for research to provide the answers to people like that, so that they can have the kind of life that this blessed country of ours affords?” he said.

At the summit, Rep. Cantor advocated for the Kids First Research Act—a bill that puts taxpayer funding into scientific research of pediatric diseases and disorders, sponsored by Reps. Gregg Harper, R-Miss., and Peter Welch, D-Vt.

"We cannot keep funding the same things we’ve been funding without continuing to strive to ensure that we are constantly, relentlessly in search of results,” Rep. Cantor said.

In his introduction of Rep. Cantor, George Washington President Steven Knapp said more than 60 faculty members from five schools at GW are currently involved in the Autism and Neurodevelopmental Disorders Initiative.

“Our location in the heart of the nation’s capital gives our university the unique opportunity to serve as the location of important discussions about autism and its effects on individuals, communities and families not only in this nation, but around the world,” Dr. Knapp said.

Dr. Knapp also announced that the Congressional Autism Caucus has invited GW to provide special training for congressional staff members on how the Affordable Care Act will provide additional treatment and support for those with autism, which was met with overwhelming applause from the audience.

Rep. Cantor acknowledged that there may be no single answer that will “solve” autism, but with a “pursuit of research,” we can “ultimately come to the best practices” to deal with its effects.

“I think that we can ultimately work to provide answers to finally put this last piece of the puzzle into the greater picture,” he said.

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Lorri Unumb

Lorri Unumb

Lorri Unumb, adjunct professor in the George Washington University School of Law and Autism Speaks vice president for state government affairs, with her son, Ryan, who was diagonosed with autism spectrum disorder in 2003 and is now 12.