Testimony of Ann Gibbons, Autism Speaks
(May 19, 2006) Mr. Chairman, I am Ann Gibbons, a resident of Bethesda, Maryland, a member of the Board of Autism Speaks, and the mother of a 17-year-old son with autism.
Autism Speaks was launched to help find a cure for autism by raising the funds to facilitate and quicken the pace of research, to raise public awareness of autism, and to give hope to all those who suffer from this disorder. Autism Speaks' goal is to give a voice to an entire community, to every family dealing with the hardships of autism. With its mergers with the National Alliance for Autism Research and the Autism Coalition for Research and Education, Autism Speaks now represents our nation's largest autism advocacy organization.
In both of my roles, in my public capacity as an Autism Speaks board member and in my private role as a mother of an autistic child, I commend you, Mr. Chairman, for your leadership in promoting funding for biomedical research and support you in your efforts to secure increased funding for the National Institutes of Health this year.
Funding for understanding the causes of and finding treatments for autism is sorely needed. Autism is our nation's fastest-growing developmental disorder, now affecting 1 in 166 children in the United States, up more than tenfold from just a decade ago. A Harvard School of Public Health professor, in a recent book, estimates that it can cost $3.2 million to care for an autistic person over the course of his or her lifetime, and by conservative estimates autism costs our society $35 billion annually in direct and indirect costs.
Autism has no known cause, no known cure, and few effective treatments. And while NIH funding for autism may have tripled in the past decade to $100 million, that amount pales in comparison to the money spent for research on other diseases and disorders that affect fewer individuals.
Autism research is poised at a turning point. While diagnoses are skyrocketing at epidemic rates, many areas of autism research stand on the verge of important findings. If adequately funded, this research could yield real progress on the diagnosis, treatment and cure for this disorder. The President's proposed freeze on NIH funding falls short on all counts, and would seriously impede the progress and promise of autism research.
One turning point is the development of new treatment standards for autism spectrum disorder. This program would support research on new or existing interventions with the goals of establishing common methods of treatment and measurements of treatment efficacy. This study could hasten the ability to use existing treatments early to improve outcomes for children and families struggling with the disability of autism spectrum disorders. When autistic children do receive evidence-based early intervention service between ages 3 and 5, from 20 to 50 percent of them are able to go onto mainstream kindergarten. Early intervention is critical in order to provide children with autism the optimum opportunity to develop in the most normal way possible.
Unfortunately, Mr. Chairman, the President's proposed budget for Fiscal 2007 will freeze funding for autism, and research leading to advances in autism intervention will not be possible.
Another turning point is the need to define core features of autism, including when it begins, its long-term course, and subtypes of the disorder that may exist on what is known as the autism spectrum.
Defining the features of autism could lead toward the long-term goal of finding genetic and non-genetic causes of autism and offering the possibility of providing better treatments or even prevention of the disease. It's also urgent that we better understand the genetic associations with autism so that research into the interaction of genes with the environment can be understood.
With the budget proposed by President, this research will not be funded, and these advances cannot be made.
With the President's budget, progress in understanding brain development and autism, one of the most devastating disorders affecting hundreds of thousands of children, will be slowed or halted. Scientists will be unable to realize the full potential of the latest scientific techniques, in neuroimaging and genetics technology.
Mr. Chairman, autism, which the Centers for Disease Control and Prevention estimates now affects 300,000 American children between ages 4 and 17, will continue to grow, with 3 children now being diagnosed ever hour. The pain and suffering of autistic children and their families will continue, as will the costs to society. But research on this devastating disorder will be stymied, progress on potential treatments and cures will be stymied as a result of the President proposed freeze on spending for biomedical research and on research on autism.
Moreover, we will lose the opportunity to save an entire generation of children from this devastating disorder, which can lock people in their own worlds, unable to communicate with, and sometimes unable to experience the affection of those who love them.
Mr. Chairman, thank you for giving me the opportunity to speak for those with autism and their families.