[Congressional Record (Bound Edition), Volume 145 (1999), Part 1]
[Extensions of Remarks]
[Pages 319-320]
[From the U.S. Government Publishing Office, www.gpo.gov]



  INTRODUCTION OF THE AUTISM STATISTICS, SURVEILLANCE, RESEARCH, AND 
                   EPIDEMIOLOGY ACT OF 1999 (ASSURE)

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                       Wednesday, January 6, 1999

  Mr. SMITH of New Jersey. Mr. Speaker, today I am re-introducing 
legislation that will provide $7.5 million to establish several centers 
of expertise in autism in an effort to quantify the incidence and 
prevalence of autism, as well as develop new ways to treat and prevent 
pervasive developmental disorders such as autism. My legislation--The 
Autism Statistics, Surveillance, Research, and Epidemiology Act of 1999 
(ASSURE)--will empower the Centers for Disease Control and Prevention's 
(CDC) in the fight against autism.
  This bill 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 New Jersey. It is a health 
care and medical research bill which is long overdue, and I urge all of 
my colleagues to lend it their support.
  According to 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 of the developmental disability (i.e., better 
diagnosis), or an actual increase in developed cases of autism.
  Under the Smith ASSURE legislation, CDC will uncover and monitor the 
prevalence of autism at 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

[[Page 320]]

how autism differs from other developmental disabilities and disorders. 
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. In short, 
the ASSURE legislation will build the research infrastructure critical 
to finding the cause or causes of autism. And once the cause or causes 
are identified, prevention strategies can be developed and a cure 
becomes more likely.
  The collaborative efforts by CDC and state health departments will 
help scientists better understand which environmental exposures, if 
any, are most likely to cause children to develop autism in the womb. 
In addition, each center established under this legislation would tend 
to develop a certain niche of autism expertise. Such areas could 
include: specific genetic markers; early prenatal maternal drug and 
other exposures; and other autism spectrum disorders.
  The story behind the creation of this legislation is in many ways 
illustrative of why we need to pass and enact the ASSURE act this 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 Gallagher, the parents of two beautiful children 
with autism, met with me 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 
(NJDHSS). 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, but 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 to the task 
at hand. Quite simply, no one knew for certain what the national rate 
of autism was supposed to look like, and therefore no one could tell 
parents whether the rate of autism in their town was at, above, or 
below the national average.
  This news came as a surprise to me and to the parents of autistic 
children. Although there are rough estimates of autism rates from 
studies in foreign countries, CDC and the NJDHSS did not have enough 
information to determine if the alleged autism ``cluster'' in Brick was 
a real public health problem or an illusion of chance. And without 
knowing whether or not a problem exists, it makes it tough for public 
health officials to respond to a community's concerns because the cause 
of autism and how to prevent it remain shrouded in mystery. Mr. 
Speaker, the experience of Brick should serve as a wake-up call that 
more autism research is needed if the causes of the disorder and a cure 
are to be found anytime soon.
  As a first step, an intensive effort by CDC and the Agency for Toxic 
Substances and Disease Registry (ATSDR) is underway to try to derive 
national autism rates and 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.
  But we need to take the second step and enact this legislation if we 
are going to generate real progress in the fight to eliminate autism. 
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 for the nearly 500,000 
autistic persons in America.

Summary of Autism Statistics, Surveillance, Research, and Epidemiology 
                          Act of 1999 (ASSURE)

       $7.5 million in authorization for the Centers for Disease 
     Control and Prevention (CDC) to create the National Autism 
     and Pervasive Developmental Disabilities Surveillance 
     Program.
       Authorizes CDC to create between three and five ``Centers 
     of Excellence in Autism,'' which would: (1) monitor the 
     prevalence of autism at the national level, (2) assist in 
     development of state autism surveillance programs, (3) 
     provide education and training for health professionals to 
     improve treatment of autism, and (4) develop center-specific 
     expertise in one or more areas of autism research.
       Establishes CDC as the nation's clearinghouse for autism 
     research and policy development.
       Establishes an advisory committee and authorizes annual 
     reports to Congress on the state of autism research.

     

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