Remarks of Senator Hillary Rodham Clinton National Alliance for Autism Research November 19, 2003

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Lawrence Chambers
5 years ago
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1 Remarks of Senator Hillary Rodham Clinton National Alliance for Autism Research November 19, 2003 Hello everyone, it is an honor to be here today. The National Alliance for Autism Research (NAAR) has come so far since its inception in The parents who began this organization have truly demonstrated their dedication to children and a commitment to unraveling the devastating mysteries of autism spectrum disorders. I want to applaud all of you for your contributions and also recognize NAAR s CEO Glenn Tringali and NAAR s board chair Prisca Marvin for their efforts on behalf autistic children. This organization, and the Doug Flutie Foundation that I have worked with on several occasions, have done an exemplary job in demonstrating to me the complexities of autism and in taking steps to educate the public about this disorder. 1

2 I know the National Institutes of Health are also leading several programs, and I m glad to see NIMH director Dr. Thomas Insel, NIMH director of neuroscience, Dr. Stephen Foote, and NINDS director Dr. Story Landis, here this afternoon. Your work gives immeasurable hope to families affected by autism. I have often heard from parents such as yourselves about this disorder. About the heartbreak families experience when a physician returns to them with the dreaded diagnosis of autism. About the anxiety parents experience of watching, and trying to help treat their fragile infants as they grow into toddlers with impaired ability to reciprocate affection, speak, think or relate to others. Perhaps the most difficult part of discovering that a child has autism, is knowing that there is no cure, and the causes of this disorder are unknown. However, we all do know that autism affects 1 in 500 to 1 in 2000 Americans. We also know that autism begins in early childhood and 2

3 impairs thinking, language, and that is largely considered one of the most heritable - over 90 percent - of all neurological disorders. This is why I have long supported efforts to answer the many questions about autism spectrum disorders. I joined the Congressional Autism Caucus during my first year in the Senate - I felt that we needed a bipartisan coalition to focus federal efforts in improving the lives of families and children who suffer from this disorder. I also wrote to Senate appropriators to substantially increase funding for autism monitoring and assessment activities at the Center for Birth Defects and Developmental Disabilities at the Centers for Disease Control (CDC). I have also been a strong proponent of the twelve Centers for Children s Environmental Health and Disease Prevention Research funded by NIEHS and Environmental Protection Agency. Some of these centers are focused on studying the potential environmental causes of autism by combining new approaches to researching, 3

4 identifying, treating, and ultimately preventing health risks posed to children by environmental hazards in the communities in which they live, play and attend school. When I discovered that the EPA was considering scaling back substantial funding for these programs, I immediately wrote a letter to ensure that the EPA administrator maintained funding for the program. I have also written letters to the Senate Appropriations Committee to included funding so the EPA would be able to continue funding this valuable program and years of research and community outreach would not be lost. I will continue fight for this funding as Congress goes through the appropriations process at this time. In a similar vein, I have long considered the fact that our nation s systems for tracking chronic diseases are woefully underdeveloped. All across our nation are communities where disease clusters ranging from autism to cancer raise questions about the role of environmental 4

5 factors in chronic diseases - yet we have not coordinated a system to study these patterns. This is why I introduced the Nationwide Health Tracking Act of 2002, a bill that would establish a comprehensive national tracking system for chronic disease, organize pollution and disease data, and then allow us to integrate and draw conclusions about what is happening in our neighborhoods. I also believe that we should be coordinating every data source at our disposal so that we have as much information as possible about trends in autism. For this reason, I introduced the 2003 Act to Prevent Developmental Disabilities in Education. This bill simply says that the Department of Education has to collaborate with the Centers for Disease Control and Prevention to coordinate their data collection and analysis efforts. Since the Department of Education has the only nationwide record of children with developmental disabilities, it is 5

6 crucial that we include our schools in our efforts to track autism cares. I am pleased that in some states this type of collaboration is already occuring - it is only by thinking out-of-the-box that we will truly understand and stem the growth in autism. And I will continue to work with my colleagues on the Health and Education Committee to strengthen these efforts through the Individuals with Disabilities in Education Act. In addition to protecting children, I have fought to protect parental rights regarding issues surrounding autism. I spoke in opposition to provisions in last year s Homeland Security bill which included unrelated vaccine liability provisions, provisions to protect one particular manufacturer by dismissing existing lawsuits brought by parents of autistic children who believe there may be some connection between the mercury-based preservative and their child s illness. 6

7 NAAR has been at the forefront of rigorous science that has not yet shown a connection, and in meantime, vaccines are crucial to our public health and we must do more to make sure all kids are getting their necessary shots, even as we continue the research to continue our progress with immunization safety, and ensuring ALL families are protected and treated fairly. And science may or may not ever uncover a connection between vaccines and autism, and the tort system may or may not be the right solution. However, I believed that enacting only provisions that help manufacturers, while ignoring families concerns for compensation, and children s needs for a strong vaccine supply not only fail to protect homeland security, they fail to adequately protect children from preventable disease. This provision was successfully stripped in the final bill. Clearly it appears that now is a time when federal concerns are beginning to match the concerns of parents who have fought for their children for decades. I know that Secretary Thompson was here this 7

8 morning to detail a new federal initiative to conquer autism this plan will be reviewed by the Interagency Autism Coordinating Council that was set up by the Child Health Act of 2000 passed during the Clinton administration. Along with the newest partnerships between NAAR and NIH announced just this morning, this federal plan will hopefully help us understand the genetic and environmental causes for autism and create innovative approaches to treating and teaching autistic children. For example, the first partnership, the NAAR Autism Genome Project is ambitious - now that the NIH has sequenced the human genome consisting of approximately 30,000 genes, scientists can identify regions on the 46 chromosomes that might be inherited in families. By identifying these regions, the scientists can hopefully focus on suspect genes and attempt to determine their function and perhaps identify what has gone wrong with these genes to give rise to autism. 8

9 The High Risk Baby Siblings Autism Research Project will also provide an in depth look into autism so we can discover and treat autism as early as possible. I am also so pleased to hear about advanced community efforts such as the New York Center for Autism s latest project. I understand that in response to the rising incidence of autism, NYCA will establish a model school that will not only provide science based treatment and education to children with autism in New York City but will offer educational programs and training opportunities for public and private school educators and professionals. Until we find a cure or a treatment, schools are important to assisting families and children affected by autism. I m certain that through convergence of the scientific, academic, community and political programs we can successfully develop treatments and hopefully a cure for autism. We have a long road before the end is near, and I am confident the National Alliance for 9

10 Autism Research will continue their good work until our nation s children are no longer locked in the solitary world of autism. I am proud to have been involved in some of these efforts am committed to doing whatever I can in the United States Senate to bring that day closer when we can say that there is a cure for autism. Thank you. 10

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