LETTER
From Rep. Dan Burton to President Bush
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
For more information on Chairman Burton’s legislative and
investigative efforts on autism, please visit his website. A copy of the California
Department of Developmental Services report, entitled “Autistic Spectrum
Disorders, Changes in the California Caseload: 1999-2002,” is available here.
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