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Congressman Dan Burton's Letter
to George Bush Requesting a National Summit on Autism
Dan Burton, Chairman, Subcommittee on Human Rights and
Wellness, May 15, 2003
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May 15, 2003
The Honorable George W. Bush
President of the United States
The White House
1600 Pennsylvania Ave., NW
Washington, DC 20500
Dear Mr. President:
Mr. President, you have made the statement many times that we
should leave no child behind. Unfortunately, there are a growing
number of our children who are in serious danger of being left
behind because of the devastating scourge of autism. Thus, I am
writing you today to urge you once again to convene a White
House Conference to confront the National problem of autism.
Autism is a devastating disease that has already reached
epidemic proportions in this country, and the problem continues
to grow. A White House Conference on autism could galvanize a
National effort to find the underlying cause or causes of
autism, and ultimately lead towards a cure for this terrible
disease, as well as efforts to develop new services to help
parents of autistic children meet the many challenges they face
on a day-to-day basis.
Autism was once considered a rare disease affecting just 1 in
10,000 children. In April 2000, when the Government Reform
Committee held its first hearing on the dramatic rise in autism,
Federal agencies were estimating that autism affected 1 in 500
children in the United States. A study reported in the Journal
of the American Medical Association indicates that ratio may
actually be as high as one in every 150 children, and the
problem continues to grow.
According to a newly released report by the California
Department of Developmental Services (DDS), California's autism
population has nearly doubled in just the last four years, from
10,360 cases on December 31, 1998, to 20,377 cases as of
December 31, 2002. These figures indicate a 97 percent increase
in autism cases, and nearly a 100 percent increase in the
state's autism caseload since 1999. Since December 1988,
California has seen a staggering 634 percent increase in autism
cases, jumping from 2,778 cases in December 1987 to 20,377 cases
in December 2002.
Autism is now the number one disability for children entering
California's Developmental Services System, even more prevalent
than childhood cancer, diabetes and Down's syndrome. Children
with autism represent almost 13 percent of the total population
served by California's Department of Developmental Services. It
is important to note that the figures I cited for California do
not include persons with Pervasive Developmental Disorder (PDD),
PDD-Not Otherwise Specified (PDD-NOS), Asperger's Syndrome, or
any of the other milder autism spectrum disorders. The
California data reflects only those children who have received a
professional diagnosis of level one (DSM IV), autism - the most
severe form of autism. If we factor in the other milder autism
spectrum disorders, the problem becomes even more alarming.
Tragically, California's situation is not unique. The rate of
growth of persons with autism in California is commensurate with
reported increases in other states. Since 1988 for example,
Florida has reported a 571 percent increase in autism. Maryland
has reported a 513 percent increase just between 1993 and 1998,
and in my home state of Indiana, 2,462 children ages 3 to 21
were diagnosed with autism in 1999 alone. That represents
one-fourth of 1 percent of all school-age children in Indiana,
or 1 out of every 400. The exponential growth in autism cases
Nation-wide shows no signs of diminishing. The Autism Society of
America estimates that the number of autistic children in the
United States is growing by 10 to 17 percent each year. If these
trends continue, it is conceivable that the number of autistic
children in America could reach 4 million in the next decade.
Mr. President, as a Nation we are facing a crisis regarding the
dramatic rise in autism rates and the resulting emotional and
financial strain placed on families, our educational system --
as they attempt to educate these children who have very special
needs - and our state Medicaid and disability programs. We face
an even greater crisis in the next two decades as the need for
adult services and long-term housing for today's autistic
children simply explodes.
We must develop solutions to help families and communities cope
with this crisis, and we must also do all we can to determine
what is causing this epidemic and learn how to stop it. A White
House Conference could bring together the best scientific
minds to chart a comprehensive research agenda to uncover the
underlying causes of this epidemic, including the exploration of
the biologically plausible theory of mercury poisoning though
childhood immunizations and dental amalgams. In addition, a
White House Conference on autism could bring together
parents of autistic children and leaders in the fields of
education and social services to begin a National dialogue about
addressing the life-long challenges faced by these children and
their families.
The problem of autism is simply not going to go away. We cannot
afford to leave these children behind by doing nothing. We must
mobilize a National effort to eradicate this terrible disease;
and your leadership, Mr. President, is critical if any such
effort is to succeed. Once again, I ask you to convene a White
House Conference on autism without delay.
Mr. President, thank you for your leadership, and for your
personal consideration of this request.
Sincerely,
Dan Burton
Chairman
Subcommittee on Human Rights and Wellness
CC: The Honorable Laura Bush
First Lady of the United States
The Honorable J. Dennis Hastert
Speaker of the House
The Honorable Bill Frist, M.D.
Majority Leader
United States Senate
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