[Congressional Record Volume 143, Number 76 (Thursday, June 5, 1997)]
[Extensions of Remarks]
[Pages E1123-E1124]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                       SUPPORT FOR AUTISM FUNDING

                                 ______
                                 

                         HON. STEVEN R. ROTHMAN

                             of new jersey

                    in the house of representatives

                         Thursday, June 5, 1997

  Mr. ROTHMAN. Mr. Speaker, I rise today to share some facts about a 
disease that is very close to my heart--as it is to thousands of other 
Americans--autism. My nephew, Jack, the son of my twin brother, is 
afflicted with this disease and his illness has educated our entire 
family about how little is known, and how much still needs to be 
learned, about autism.
  I want to tell my colleagues a few things about autism that will not 
be learned from watching the movie ``Rain Man.'' Autism is not rare. It 
affects 400,000 people in the United States. One in 500 children born 
today will be autistic. Though 5 percent will make strides with early 
intervention, 95 percent of those affected will never marry, have a 
meaningful job, or live on their own. More than half will never learn 
to speak.
  Autism affects more people than multiple sclerosis, cystic fibrosis, 
and childhood cancer combined, yet autism still receives less than 5 
percent of the research funding of these other diseases. Autism costs 
America over $20 billion dollars each year, yet just last year the NIH 
spent only $31 per child on autism research, significantly less than 
what is spent on other diseases which affect fewer individuals.
  Until very recently, there was no hope for people with autism. For 30 
years, psychiatrists mistakenly thought of autism as an emotional 
problem, the fault of bad parenting. As a result of this tragic 
mistake, parents did not organize, no medical research was funded, no 
scientists were encouraged to enter the field, no progress was made and 
another generation of autistic children was lost.
  But while the world ignored people with autism, science marched on, 
largely through the support Congress has given to the National 
Institutes of Health. The strides that science has made in neurology, 
immunology, and genetics are unbelievable. We have gone from penicillin 
to gene therapy in the span of a single lifetime. We live in a world of 
miracles and wonders. In an age when important discoveries

[[Page E1124]]

are being made in other diseases every day, we cannot let another 
generation of children slip away.

  I have recently met with the parents and professionals of a group 
called CURE AUTISM NOW, and they have let me know that there is hope 
for people with autism. The top neurologists and geneticists in the 
country say that autism will yield to medical research, there will be 
prevention, treatments, and maybe even a cure. It is only a question of 
time, energy, money, and will.
  Sick children are at a special disadvantage in this world. They 
cannot raise money for research, they do not vote, they have no 
political access. Their voices are small and soft. This is even more so 
for autistic children, many of whom have no voice at all and whose 
parents are distracted and depleted by the challenges of caring for 
them, fighting for insurance coverage, fighting the State for services, 
and fighting exhaustion, disillusionment and despair. It is, therefore, 
no surprise that pediatric illnesses are funded at a level far below 
diseases that affect adults.
  Recently, the parents of autistic children have visited me and many 
other Members and their staffs to inform us about autism and the 
deficiency in current spending. We hope that Congress will support 
strong report language encouraging the NIH to redouble its efforts in 
the fight against autism. In particular, I encourage my colleagues to 
support Centers of Excellence for Autism modeled after the very 
successful center program for Alzheimers.
  I know that every disease is worthy and every parent's pain is deep. 
Human suffering is not a competitive sport to be ranked or rated. But 
in autism we have been so behind for so long, and there is so much 
progress to be made at this critical moment. I ask all of my colleagues 
to give us a helping hand, and find a cure for autism.

                          ____________________