U.S. Senator Tom Harkin (D-IA), chairman of the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, chaired a hearing Wednesday, August 5 on the state of autism research, treatments and interventions. Senator Harkin was joined by Senator Thad Cochran (R-MS), ranking member on the Senate Appropriations Committee, and Senator Arlen Specter (D-PA),
View highlights from the Senate Committee hearing
YouTube Video ~ 4 minutes
member of the Senate Appropriations Committee. The Senators heard testimony from Tom Insel, M.D., director of the National Institute of Mental Health; Geraldine Dawson, Ph.D., chief science officer for Autism Speaks; and four parents of children with autism, Joshua Cobbs, chair of the Iowa Autism Council, Nicole Akins Boyd, vice chair of the Mississippi Autism Task Force, David Miller, board member of the Northern Virginia Community College, and Dana Halverson, co-founder of BEAT-Iowa. Click here to view the hearing on CSPAN.org.
Dr. Insel started the testimony by giving a brief review of the prevalence of autism, research findings, and recent initiatives at the National Institutes of Health. Dr. Insel, who also chairs the Interagency Autism Coordinating Committee (IACC), described autism as a developmental brain disorder, one marked by great heterogeneity: “We increasing talk not about ‘autism' but about ‘autisms' ... we really think about this as many different disorders.” Dr. Insel testified that autism is thought to be a problem of brain connection, a disorder affecting the synapses in the brain. He noted that recent advances in genetics helped to explain part of autism, but we need to learn more about gene-environment interaction. Dr. Insel pointed out that while behavioral interventions have been helpful for people with autism they are often not covered by insurance. He also noted that services for adults with autism are lacking. “I can't emphasize enough the importance of attention to adults and those who will soon become adults,” Dr. Insel stated.
Dr. Dawson followed Dr. Insel. She began by noting that this year more children will be diagnosed with autism than with AIDS, diabetes and cancer combined and that research on autism is severely underfunded compared to these other disorders. She emphasized that we have come to understand that there are many different causes of autism, and that any one cause will likely only explain a minority of cases. Dr. Dawson stressed that large scale studies and databases, such as the Autism Genetic Resource Exchange, will be important for discovering the genetic and environmental risk factors for autism, and their interaction. She noted that it is now possible to screen for autism at 18 months of age and that clinical trials testing interventions for toddlers with autism are being funded by Autism Speaks. She emphasized that funding for training of professional and dissemination of evidence-based practices is an important priority. Dr. Dawson noted that many individuals with autism suffer not only from the autism itself, but also from a wide range of medical conditions, and stressed that these medical conditions need to be studied and treated. Like Insel, Dawson underscored the need for increased research and services for adults with autism. Notwithstanding the urgency of autism as a public health issue, “the pace of discovery is simply too slow, in large part due to a lack of adequate funding.” Dr. Dawson stressed the need for parents to have access to adequate treatment. “That's why it's critical to support insurance coverage for behavioral interventions, which we know are cost effective in the long run.”
The four parents spoke after Dr. Dawson, testifying to the desperate need for services in states across the country. Each of the parents stressed a different issue of importance to families. Mr. Cobb talked about his family's success in using telehealth services. Ms. Boyd noted the staggering lifetime cost of care and asked how society could afford not to adequately fund research and treatment. Mr. Miller discussed the role of community colleges in serving the growing numbers of young adults with autism. Lastly, Ms. Halverson talked about biomedical approaches to treatment and her concerns with environmental factors including vaccines. A lively discussion followed the individual presentations.
Senator Harkin recognized that when it comes to treatment for their children, families are “at their wits end.” Senator Cochran asked the panel what could be done and Dr. Dawson responded that insurance coverage and training of professionals were absolutely critical. She noted that the debate over health care reform offered a special opportunity for Congress to act. Ms. Boyd, Mr. Miller, and Mr. Cobb mentioned the financial burden parents face in providing behavioral care to their children. Senators Cochran and Harkin pledged to take action that would help families.
Summarizing the testimony, Senator Harkin noted the importance of research, of interventions that help families, and of transition programs for young adults. “It's a big task but one that we can't shirk to address,” Harkin stated. “We will continue to pursue open inquiry. If there are questions out there, let's have some answers.”
Click here to view the hearing on CSPAN.org.