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Calls to Action

Autism Speaks and Washington Listens

Advocates and policymakers gather at inaugural autism policy and action summit to call for national autism plan
November 15, 2013

WASHINGTON, D.C. (November 15, 2013) – Autism Speaks yesterday was joined by hundreds of advocates on Capitol Hill. More than 260 autism activists from across the nation visited all 535 members of Congress, demanding a strategic national autism plan. 

Parents and their children with autism, self-advocates, volunteers and leading researchers rallied together on the steps of the Capitol building, calling for the federal government to take action in support of the 1 in 88 individuals on the autism spectrum.

In addition, members of the Autism Speaks leadership team held meetings with high ranking Congressional leaders, including House Speaker John Boehner (R-OH) and House Minority Leader Nancy Pelosi (D-CA). During the meetings, three lawmakers agreed to join the Congressional Autism Caucus: Sen. Bob Casey (D-PA), and Reps. Tim Griffin (R-AR) and Kevin Yoder (R-KS).

The events marked the culmination of “Autism Speaks to Washington,” a first-of-its-kind three-day autism policy and action summit hosted by Autism Speaks in Washington, D.C. The summit began the evening of Tuesday, November 12, at a reception honoring members of the Congressional Autism Caucus, which is co-chaired by Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA), as well as Sen. Tammy Baldwin (D-WI).

“This moment has been eight years in the making,” said Autism Speaks Co-founder Suzanne Wright during the reception. “What a pleasure to see a bipartisan effort for our children. There are families and people living with autism in every corner of this country, and we need a level of research that meets the prevalence of autism.” Wright co-founded Autism Speaks with her husband, Bob, after their grandson was diagnosed with autism in 2005.      

“The aging-out issue is a huge bubble that will make its way into society, and we are not prepared for it,” added Rep. Smith in reference to the 500,000 children in the U.S. with autism who are aging out of the system within the next decade. He went on to say what we do here not only helps our own kids, but also has a huge impact internationally. 

Rep. Doyle called for Congressional action in 2014 to reauthorize the Combating Autism Act, which will otherwise expire in September. “We need to fund some of these programs that need funding…tell these members of Congress we need to start putting some dollars behind the Combating Autism Act,” he stated.

The summit reconvened Wednesday, November 13, at The George Washington University, and featured presentations unveiling Autism Speaks’ enhanced state and federal advocacy strategy, groundbreaking advances in science and research, and a discussion on the adult-services system. Autism Speaks also released the results of its National Housing and Residential Supports Survey. Wednesday’s speakers included House Majority Leader Eric Cantor (R-VA), Sen. Bob Menendez (D-NJ), Suzanne and Bob Wright, Autism Speaks President Liz Feld and The George Washington University President Steven Knapp.

“Families can pay up to $60,000 a year on autism treatment and services,” Bob Wright said during his welcoming remarks on Wednesday. “That’s more than many of our families earn in a year. We simply cannot afford not to have a national autism plan.” Wright also called for greater insurance coverage of autism treatments and called on the Senate to ratify the United Nations Convention on the Rights of Persons with Disabilities.

When asked about support for the autism community on Capitol Hill, Rep. Cantor reported deep bipartisan support for the parents and families of children affected by the disorder. Congress is trying to make such support “a priority commitment,” he said, adding that investing in research to develop the best therapies for addressing autism’s symptoms could provide tremendous return not only for families and children, but for the country.

Sen. Menendez, who was the original Senate sponsor of CARA (the 2011 reauthorization of the Combating Autism Act) and the sponsor of the AGE-IN bill (an adult services bill introduced in 2013), vowed to continue fighting to help the autism community and called for equal opportunity for citizens on the autism spectrum.

Wednesday evening featured a number of policymakers including Sen. Al Franken (D-MN); Sen. Edward Markey (D-MA), who defined the mission to help children with autism as the 21st century version of the Apollo space mission; and Vermont Gov. Peter Shumlin, who gave a touching speech about his childhood struggles with dyslexia. Gov. Shumlin also urged autism advocates to work on the state level with the nation’s governors. Singer Chelsea Stepp inspired the crowd with a performance of a song called “Beautiful Blessing,” which she dedicated to her sister who has autism.

“Autism Speaks to Washington” was live streamed in its entirety on AutismSpeaks.org. To watch each session from the three day summit visit www.autismspeaks.org/dcsummitlive.