[Congressional Record Volume 144, Number 140 (Thursday, October 8, 1998)]
[Extensions of Remarks]
[Pages E1942-E1943]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




  INTRODUCTION OF THE AUTISM STATISTICS, SURVEILLANCE, RESEARCH, AND 
                   EPIDEMIOLOGY ACT OF 1998 (ASSURE)

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                       Wednesday, October 7, 1998

  Mr. SMITH of New Jersey. Mr. Speaker, today I am introducing 
legislation to improve the quality of research on pervasive 
developmental disorders like autism. My legislation--The Autism 
Statistics, Surveillance, Research, and Epidemiology Act of 1998 
(ASSURE)--will provide critical support for the Centers of Disease 
Control and Prevention's (CDC) ongoing efforts to better quantify the 
incidence and prevalence rates of autism and its related developmental 
disorders.
  This legislation was crafted in close cooperation with the National 
Alliance for Autism Research (NAAR), the developmental disabilities 
experts at CDC, as well as with service providers from my district. It 
is an important health care and medical research bill which I urge all 
members to support.
  According the Centers for Disease Control and Prevention, ``autism is 
a serious life-long developmental disability characterized by impaired 
social interactions, an inability to communicate with others, and 
repetitive or restrictive behaviors.'' It is estimated that autism 
affects one out of every 500 children, although precise rates are 
unknown. There is also a general consensus that autism rates seem to be 
increasing, although it is not known whether these increases represent 
a better understanding the developmental disability (i.e., better 
diagnosis), or an actual increase in developed cases of autism.

[[Page E1943]]

  The story behind the creation of this legislation is in many ways 
illustrative of why we need to pass and enact the ASSURE act when 
Congress reconvenes next year. For it was only after I had a meeting 
with a pair of courageous parents of autistic children in Brick 
Township that I realized the pressing need for better autism research. 
Mr. and Mrs. William and Bobby Gallagher, the parents of two beautiful 
children with autism, met with me in the summer of last year to share 
their concerns that Brick Township seemed to have an abnormally high 
number of children diagnosed with autism. After presenting me with 
preliminary data suggesting that as many as 27 children may have been 
diagnosed with autism in Brick over the last decade, I relayed their 
concerns personally to Len Fishman, Commissioner of New Jersey's 
Department of Health and Senior Services. I asked him to initiate a 
preliminary inquiry to determine if an autism ``cluster'' investigation 
was warranted.
  Commissioner Fishman was very receptive to the concerns of the Brick 
parents, particularly since the New Jersey Department of Health and 
Senior Services (NJDHSS) and the Ocean County Department of Health, in 
conjunction wit the federal Agency for Toxic Substances and disease 
Registry (ATSDR), have been conducting a very comprehensive 
investigation of a cancer cluster in Toms River, New Jersey.
  However, after a few weeks of preliminary research by state 
officials, it became apparent that the current level of scientific 
knowledge in the United States about autism was inadequate and no one 
knew for certain what the national rate of autism was. Although there 
were rough estimates of autism rates from studies in foreign countries, 
CDC and the NJDHSS did not have enough information that an 
epidemiologist could use to determine if the alleged autism ``cluster'' 
in Brick was a real public health problem or an illusion of chance.
  As a result, an intensive effort by CDC and ATSDR is underway to try 
to derive national autism rates and try to determine if an autism 
``cluster'' exists in Brick. The study is one of the first of its kind 
ever undertaken in the United States, and the results of the 
investigation will prove invaluable for other communities that may be 
affected by similarly high numbers of autism cases.
  That is where the ASSURE act comes in. Under my ASSURE legislation, 
CDC will uncover and monitor the prevalence of autism as a national 
level by establishing between three and five ``Centers for Research in 
Autism Epidemiology'' across the country. These Centers would conduct 
population-based surveillance and epidemiologic studies of autism. 
Periodic screenings of the population (5 to 7-year old children) would 
be undertaken to examine prenatal, perinatal, and postnatal factors 
that contribute to autism development.
  These Centers would combine data from multiple sites to gain a better 
understanding of how autism differs from other, related, developmental 
disabilities and disorder. Because autism is suspected to be caused by 
a combination of both genetic and environmental factors, the ASSURE 
legislation would help CDC track the trends of autism and determine 
which factors are responsible for the apparent rise in autism cases 
nationwide.
  More importantly, the collaborative efforts by CDC and State health 
departments will help public health officials to possibly prevent 
autism once scientists better understand which environmental exposures 
are most likely to cause children to develop autism in the womb. The 
idea is that each Center established under this legislation would 
develop a certain niche of autism expertise. Such areas could include: 
specific genetic markers, early prenatal maternal drug and other 
exposures; and investigating other autism spectrum disorders.
  Mr. Speaker, CDC has already established a pilot program--an autism 
epidemiology center--near Atlanta, Georgia. The limited but promising 
results from this initiative points to the fact that current 
understanding of autism is woefully inadequate and that better 
surveillance and monitoring of developmental disabilities like autism 
are critical to providing answers and hope to the parents of nearly 
500,000 autistic persons in America.

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