[Congressional Record Volume 144, Number 87 (Monday, July 6, 1998)]
[Senate]
[Pages S7358-S7359]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. GORTON (for himself, Mr. Lieberman, Mr. Faircloth, Mr. 
        Harkin, and Mrs. Boxer):
  S. 2263. A bill to amend the Public Health Service Act to provide for 
the expansion, intensification, and coordination of the activities of 
the National Institutes of Health with respect to research on autism; 
to the Committee on Labor and Human Resources.


              advancement in pediatric autism research act

  Mr. GORTON. Mr. President, today, I join with my colleagues 
Senators Lieberman, Faircloth, Harkin, and Boxer to introduce 
legislation that will build on current scientific advances in 
understanding autism and will promote additional research in this 
promising field. Many think autism is rare. In fact, it is the third 
most prevalent childhood disability, affecting an estimated four 
hundred thousand Americans and their families. It is also a condition 
that doctors and scientists believe can be cured. It is not something 
that we simply must accept.
  When people think of autism they might remember the character played 
by Dustin Hoffman in the movie ``Rainman.'' Yet autism has many faces; 
it affects people from every background, social and ethnic category. 
Children with autism may be profoundly retarded and may never learn to 
speak, while others may be extremely hyperactive and bright. Some may 
have extraordinary talents, such as an exceptional memory or skill in 
mathematics. However, all share the common traits of difficulty with 
communication and social interaction. And for reasons we do not yet 
understand, eighty percent of those with autism are males.
  But autism is not about statistics or medical definitions--it is 
about children and families. The Kruegers, from Washington state, have 
an all too typical story. Their little girl Chanel developed like any 
other child--she happily played with her parents, took her first steps, 
learned some of her first words and then she started to regress. In 
four short months, by the time she was two, Chanel had become almost 
completely enveloped in her own private world. Chanel's mother told me 
``it was like somebody came in the middle of the night and took my 
child.''
  Like many children with autism, the Krueger's daughter no longer 
responded when her parents called her name; words she once spoke 
clearly became garbled; and socializing became more and more difficult. 
Fortunately, due to her parents dedication and intervention Chanel 
Krueger at age 5, is doing remarkably well.
  But, many autistic children completely lose the ability to interact 
with the outside world. The hours these kids should be spending in 
little league or playing with their friends are often spent staring out 
the window, transfixed by the dust floating in the sunlight or the 
pattern of leaves on the ground.
  Even today, with advances in therapy and early intervention, few of 
these children will go to college, hold a regular job, live 
independently or marry. More than half never learn how to speak.
  The facts about autism can be sobering--but there is hope. Early 
intervention and treatment has helped many

[[Page S7359]]

children. Science has also made great strides in understanding this 
disorder. We now know that autism is a biological condition, it is not 
an emotional problem and it is not caused by faulty parenting. 
Scientists believe that autism is one of the most heritable 
developmental disorders and is the most likely to benefit from the 
latest advances in genetics and neurology. Once the genetic link is 
discovered, the opportunitis for understanding, treating, and 
eventually curing autism are endless.

  The promise of research is exactly why I am introducing this 
legislation and my colleague Representative Jim Greenwood has 
introduced similar legislation in the House. This bill will increase 
the federal commitment to autism research. Its cornerstone is 
authorization for five Centers of Excellence where basic researchers, 
clinicians and scientists can come together to increase our 
understanding of this devastating disorder.
  I also want to encourage the collaboration beginning to take place 
between the various Institutes at the HIH conducting autism research. 
The bill formalizes the current autism coordinating committee and 
includes a mechanism to ensure public input.
  While we are hoping to advance our understanding and treatment of 
autism through research, it is also important that pediatricians and 
other health professionals have the most current information so that 
children and their families can receive help as early as possible. The 
bill includes authorization for an Autism Awareness Program to educate 
doctors and other health professionals about autism.
  Finally, the bill includes a provision to fund a gene and brain 
tissue bank developed from families affected with autism to be 
available for research purposes. This library of genetic information 
should be a valuable tool for researchers trying to identify the 
genetic basis for the disorder.
  While the focus of this bill is on autism, advances in this area are 
also likely to shed light on related problems such as attention deficit 
disorder, obsessive compulsive disorder, and various seizure disorders 
and learning disabilities.
  Research is the key to unlocking the door and freeing those with 
autism from the isolation and loneliness of their private world. This 
bill is intended to give the NIH the resources to take advantage of the 
tremendous opportunity before us to find more effective treatments and 
ultimately a cure for autism. The promise is real. Fulfillment of that 
promise only requires our commitment. I urge my Senate colleagues to 
support this important investment in the future of our children and our 
Nation.
                                 ______