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University Of Pittsburgh Medical Center Applauds Formation Of Congressional Caucus On Autism

WASHINGTON, February 13, 2001 The establishment today of a congressional caucus on autism represents a landmark for a disorder that, according to researchers and parents of children with autism, has been virtually ignored for the past 50 years.

U.S. Reps. Mike Doyle (D-Pa.) and Christopher Smith (R-N.J.) announced the formation of the congressional Coalition for Autism Research and Education (C.A.R.E.) this afternoon in Washington, along with parent activists and some of the nation’s top autism researchers.

The formation of C.A.R.E. by Congressmen Doyle and Smith is a landmark in the history of autism. For the first time in 50 years, autism is being recognized as a serious public health concern in need of a serious response. Under the guise of the caucus, legislators, parents and researchers will unite in their efforts on behalf of autism. The overall goals of the caucus are to bring parents, professionals, and legislators together to address the issues of major concern in autism so that solutions can be developed, raise the awareness and understanding of autism within Congress, expand federal research funding by the National Institutes of Health (NIH) and find ways to reduce the disability associated with autism.

“The formation of C.A.R.E. is a positive and crucial first step in expanding autism research,” stated Rep. Doyle. “Families all across America are facing the challenges of raising children and loved ones who are autistic. It is time for the federal government to help facilitate the discussion surrounding causes and cures for this disorder as well as recognize the need for federal funding for further, more advanced research.”

“C.A.R.E. is a monumental accomplishment of the parents of children with autism who have worked tirelessly over the past six to seven years to gain recognition for autism. To use the words of parents, this disorder robs their children of the capacity to experience emotions, to be social, to communicate, and to make sense of the world,” said Nancy Minshew, M.D., associate professor of psychiatry and neurology, University of Pittsburgh School of Medicine.

Autism most often presents gradually, making itself obvious during the second year of life, but it may also have a sudden onset. Early treatment can help as can autism-appropriate intervention throughout life, but the residual disability is frequently substantial.

Parents of children with autism began their lobbying effort about seven years ago. This resulted in NIH convening a conference in 1995, called State of the Science in Autism. This conference ultimately led to the decision by Dr. Duane Alexander, the director of the National Institute of Child Health and Human Development (NICHD), to fund a $12 million-per-year network of 10 research programs to investigate the genetics and neurobiology of autism. This network, which brought together senior researchers in autism and outstanding researchers from other fields to focus on discovering the biologic basis of autism, was the first major investment by the NIH in autism research and remains the largest single autism-specific project funded by NIH.

The network links 25 universities throughout the United States and four foreign countries and provides a mechanism for a rapid research response to public health issues such as secretin as a possible cure for autism and now the relationship of measles vaccination to regressive autism.

One of the top programs in this network is the University of Pittsburgh-Carnegie Mellon University Collaborative Program of Excellence in Autism directed by Dr. Minshew and Patricia Carpenter, Ph.D., Gregg Professor of Psychology, Carnegie Mellon University. The second wave of parent lobbying resulted in the introduction and passage of the Pediatric Health Act, which became law in October of 2000. This bill was sponsored by Congressman Smith, whose attention was drawn to autism by the large cluster of children in Brick Township, N.J. This cluster was investigated by the Centers for Disease Control (CDC) and the prevalence of autism was found to be one out of every 150 children born. This is higher than the commonly quoted figure of one in 500, but the CDC felt that that the prevalence in Brick Township may be a more accurate reflection of the actual rate of occurrence of autism in the United States. The prevalence of autism has risen tenfold over the past decade. Much of this increase is related to improved recognition, driven by treatment research reporting significant improvements in outcome with early intervention. However, a significant proportion of the increase is due to a real increase in the number of children being born with autism.

The Pediatric Health Act directs NIH to establish five comprehensive autism centers, each of which is to have a clinical, educational outreach and research component. The new law also requires the CDC to start five epidemiologic centers to determine the prevalence of autism spectrum disorders in the United States. Autism spectrum disorder is the general term for a family of closely related disorders sharing the same quality and type of symptoms. This group of disorders is also formally called pervasive developmental disorders.

According to Dr. Minshew, because federal funding for autism has lagged far behind that devoted to other disorders, progress in all aspects of diagnosis, treatment and basic research – the foundation of improved treatments of the future – has been slowed. To counter this, one of the first jobs of the autism caucus will be to monitor NIH’s progress in establishing the new comprehensive centers while maintaining the 10 Collaborative Programs of Excellence in Autism that now exist. That action, according to Dr. Minshew, will honor the intent of parents and of the new legislation for NIH to substantially expand autism research.

The priority given to research by C.A.R.E. reflects the confidence that defining the genetics and neurobiology of autism will result in radically improved new treatments for autism.

In her remarks in Washington, Dr. Minshew stated, "Today we are here because we want autism to be at the forefront of the medical revolution. For 50 years, autism and families were ignored, research received little funding and progress was slow. Now, thanks to recent legislation, we can look forward to the addition of at least five comprehensive autism centers by the National Institute of Mental Health and five epidemiologic centers by the Centers for Disease Control to NICHD’s network of 10 research programs. It is now realistic to think in terms of cures, not tomorrow and not in 10 years, but in the lifetimes of children born with autism today."

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