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A Look Into the Federal Response to Rising Rates of Autism

1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism

 

On Thursday, November 29, 2012, the Oversight and Government Reform Committee continued its investigation into the rising rates of autism around the country.

Congressman Burton's opening statement submitted for the record:

I want to thank Chairman Issa for scheduling this important hearing on autism during this lame duck session.  As many of you know, because of my grandson's diagnosis with autism in the late-90s, I took it upon myself to learn about autism.   During my tenure as Chairman of the House Committee on Government Reform (1997-2002), and the subcommittee on Human Rights & Wellness (2003-2004), I held no fewer than 20 hearings examining the state of federal scientific research into the cause of and treatment for autism.

 I am proud of the work we did to raise awareness of autism and draw more attention to the need for research; and I am firmly convinced that the work we did back then laid the groundwork for the historic Combating Autism Act and the $1 Billion in Federal research into autism that is happening today. 

However, alongside the momentum gained from the Combating Autism Act, the realities bear out that we need to do more.  On March 30, 2012, the Centers for Disease Control and Prevention (CDC) released their latest figures on the number of autistic kids in America.  The numbers are sobering.  Thirty years ago it was estimated that autism affected only 1 out of every 10,000 individuals.  The latest CDC figures put the number at 1 in 88 American children (1 in 54 boys); a 550% jump in cases since 2000. 

What does this mean? This means that the epidemic of autism is an immediate crisis to our education system, our health care systems, our long-term housing and care system for the disabled, and most especially, to an ever increasing number of families across the country. Autism is a condition that can be treated to a degree but it has no known cure; which means that this is a crisis that is simply not going to ``go away.'' 

I believe that our Nation’s educational, labor, housing, law enforcement and medical communities are currently ill-equipped and undertrained to handle this lost generation of autistic individuals and that it is going to take a national commitment driven from the highest levels to marshal the necessary resources and energy to catch up. Autism has no cure and it is not a life-threatening disease. 

That means that the autistic children of today will be the autistic adults and autistic seniors of tomorrow.  Our Nation is ill prepared to deal with the complex challenges posed by a generation of autistic individuals. There have been far too many stories in the media of police, firefighters, and teachers ill-prepared to cope with an autistic individual and tragedy has resulted.  We need to change that.

We need prominent and influential leaders to step forward and spark a national debate on autism.   We need to know what's working, what isn't working and what research is most promising.  What are we doing to fight this disease and what more can be done?  These are key questions I'm hoping our witnesses can address today. 

For these reasons, earlier this year I introduced the “White House Conference on Autism Act” (H.R. 3489), to require the President of the United States to convene a White House Conference on autism charged with developing policy recommendations on ways to address the autism epidemic and its impact on Americans. 

When I started my research into autism what I found was deeply disturbing, and for the last several years I have fought hard to raise awareness of this disease, and increase research into the causes of autism, as well as new treatments for those suffering with autism.

Unfortunately, a great deal of misinformation has been thrown around in public and private about my focus on mercury in medicines as a possible factor in the autism epidemic.

I do not want to take away from the focus of today's hearing - A Look into the Federal Response to Rising Rates of Autism - but I would be remiss if I didn't mention my past associations with the theory of mercury-linked autism.  I’m not a scientist and never have claimed to be, but while I was Chairman of this Committee I heard from many credible scientists and experts who are convinced that mercury is a contributing factor; and the theory is no less worthy of exploration than the theories being propounded today that the pregnancy weight of the mother or the age of the father at conception influences whether a child becomes autistic. 

When you have no idea what is causing a disease, policymakers and scientists should never be afraid to investigate any plausible theory.  In fact, researching possible environmental factors is a central component of today's research on autism. 

Regrettably, lost in the controversy over mercury is the issue of the Vaccine Injury Compensation Program, which I hope some of our witnesses can speak to.  In the 1980s, Congress created the Vaccine Injury Compensation Program to shield medical professionals and vaccine manufacturers from liability if an individual suffered an injury from a vaccine. The compensation fund, which currently contains over $3 Billion, was created to protect the vaccine supply and to insure that all who were injured by a vaccine received compensation in a no-fault, compassionate, easy to use manner. Congress intended for families to be compensated quickly and fairly; and when the evidence was close as to whether or not the medical condition in question was vaccine related or not the court should always err in favor of the injured.

Our investigations found that over the years the system had broken; and what was supposed to be quick and fair became slow and contentious.  There has been no Congressional oversight of the Vaccine Injury Compensation Program in the last decade, and the system has not improved; if anything it has gotten worse. 

It is time for Congress to revisit this issue and consider substantially reforming this program. For the public to trust vaccine policies, it is vitally important to have a National Vaccine Injury Compensation Program that is efficient, effective, and fair to those who may have suffered injury from vaccines.

Again, I'd like to thank Chairman Issa and his staff for scheduling today's hearing.  And although I am retiring from Congress I am not retiring from the fight against autism, because I firmly believe as a nation we have a collective responsibility to do everything we can to not only stop the further spread of this disease but to help the millions of children, adults and families afflicted with this disease.


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Below is video footage of the entire hearing, plus links to the submitted testimony to Oversight and Government Reform Committee:

Part One

Part Two

Part Three

Alan Guttmacher, M.D. (testimony)
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Institutes of Health

Coleen Boyle, Ph.D. (testimony)
Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Mr. Bob Wright (testimony)
Co-Founder
Autism Speaks

Mr. Scott Badesch (testimony)
President
Autism Society

Mr. Mark Blaxill (testimony)
Board Member
SafeMinds

Mr. Bradley McGarry (testimony)
Coordinator of the Asperger Initiative at Mercyhurst
Mercyhurst University

Mr. Michael John Carley (testimony)
Executive Director
Global & Regional Asperger Syndrome Partnership

Mr. Ari Ne'eman (testimony)
President
Autistic Self Advocacy Network