I’m busy recovering from the holiday season so here’s another autism-related press release.
National Autism Association Applauds Legislation Establishing National Institute to Fight Autism Epidemic
New Research Funding Must Target Prevention and Treatment of Fastest Growing Childhood Disorder
The National Autism Association (NAA) today expressed gratitude to Senator Christopher Dodd and his staff for their dedication and efforts in drafting legislation introduced on Friday to reauthorize the Combating Autism Act of 2006 (CAA.) Citing support of some of the legislation’s provisions, the organization believes the bill falls short in adequately addressing the autism epidemic in this country.
First reported in 1943, autism was very rare until rates began to climb rapidly beginning in the early 1990′s. Now afflicting 1% of children born in 1998, autism is a whole-body disorder that is diagnosed by deficits in speech and behavior but can also impair a child’s immune and GI systems. With onset of symptoms usually at 12-24 months, in severe cases children remain non-verbal and will require lifetime care costing in excess of $3.2 million per individual. Recent research has ruled out a primary genetic cause for autism and has demonstrated that recovery is possible with intensive behavioral and biomedical interventions begun as early as possible. “These findings coupled with prevalence rising at epidemic levels compel a much more focused and intensive research agenda to find the environmental and gene-environment interactions that cause autism so that new cases can be prevented, and to find interventions and treatments that will work for each individual,” said parent and NAA board chair Lori McIlwain.
In Senator Dodd’s bill, Congress finds that autism has become a “national health emergency,” a statement strongly urged by NAA and several other organizations. “Recognizing that autism is a national crisis is an important step in the process of accelerating and improving research, treatments and services,” said Ms. McIlwain. “We are also encouraged by the provisions to address wandering-related deaths and injuries which remain on the rise in the autism community.” In 2008, Danish researchers found that the mortality rate among people diagnosed with autism is twice as high as the general population. In 2001, a California research team found that elevated death rates among those with ASD were in large part attributed to drowning. “This is a crucial part of the CAA that will have a huge impact on the personal safety of individuals diagnosed with autism.” NAA is leading an effort to end these unnecessary deaths and injuries. http://www.awaare.org/
The bill requests $2.75 billion over five years towards autism research, and $3.15 billion over six years in autism services funding. According to NAA board member Jim Moody, “Combining research and services in the same bill is necessary to adequately address the critical needs within the autism community because autism is a unique disorder that cannot be adequately addressed through existing legislation targeted at developmental disabilities. But these expenditures need to be carefully targeted to have the greatest impact in the shortest period of time if they are to be effective.”
NAA has joined approximately 70 other autism groups to obtain the best possible legislation, the Combating Autism Act Reauthorization Coalition (CAARC.) http://caacoalition.org/ The CAARC organizations submitted ten Guiding Principles to Senator Dodd’s office as the bill language was being drafted to outline the most important aspects of legislation directed at addressing the autism epidemic. While some of Principles were addressed to some extent, others have not yet been incorporated into the legislation introduced on Friday. The CAARC groups asked that strategic new research be prioritized and focused in areas that can yield meaningful short term results. “A legislative solution to the autism epidemic must ensure that funded research actually achieves the goals of prevention and treatment with the same sense of urgency directed at SARS and HIV/AIDS,” said Mr. Moody. “We must take the ‘political correctness’ out of autism science.”
Another CAARC Guiding Principle pointed out the need to address critical gaps in vaccine safety research and policy governance, but the bill makes no provisions for vaccine safety research, despite rising evidence for a role of vaccine injury in many cases of regressive autism. The legislative history of the 2006 Act called for researching vaccines as a cause of autism, but the Administration refused funding. The most important research program is an examination of the health of unvaccinated children (about 4%) to determine the prevalence of autism and other chronic ailments within that group.
NAA points out that Vaccine Court has been compensating autism since 1991 including several recent high-profile cases. Vaccines are among a small handful of environmental factors known to cause autism. What remains unknown are how many cases of autism are caused by vaccines, and what the relevant biomarkers and mechanisms are. “Immediate steps must be taken to prevent new cases and to provide appropriate compensation, required by law, for these children,” said Ms. McIlwain. “We must fund research to get these answers both to protect the overall benefits of the vaccine program and to honor the sacrifice of children injured in the war against disease.”
As this is Senator Dodd’s last term in the Senate, the CAA legislation will be in the care of Senator Robert Menendez and his staff during the next Congressional session. “We look forward to working with Senator Menendez and a bipartisan coalition to build upon the CAA introduced last week,” commented Mr. Moody. “While this is a start, we must ensure that research dollars will be used as wisely as possible and that provisions are in place to ensure community and clinician input, accountability, prioritization, urgency, and early intervention to maximize opportunities for recovery. As promised, research must also leave no stone unturned in determining potential causes of autism, and must resolve the question of how many cases of autism have been caused by vaccines.”