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Monday, December 20, 2010

Combating Autism Act Reauthorization

In one of his last acts in the Senate, Christopher Dodd (D-CT) has introduced a bill reauthorizing the Combating Autism Act. (Another member must reintroduce it during the next Congress.)

Mr. President, I rise today to introduce the Combating Autism Act, CAA, Reauthorization. Six years ago, my former colleague Senator Rick Santorum and I introduced the original CAA to expand Federal investment for autism research, services, treatment, and awareness efforts. The bill was signed into law by President Bush following a nearly unanimous Congressional vote. The original CAA made great strides in addressing the growing public health problem. However, our work remains unfinished and essential programs are set to expire in 2011. For this reason, joined by my colleague Senator Robert Menendez, I am introducing a reauthorization bill to strengthen the existing federal, state, and local efforts.

Autism is one form of Autism Spectrum Disorder, ASD, a group of developmental disabilities caused by atypical brain development. It is a severe neurological disorder that affects language, cognition, emotional development, and the ability to relate and interact with others. Current estimates suggest that over 1 million Americans suffer from some form of autism.

Individuals with ASD tend to have challenges and difficulties with social and communication skills. Many people with ASD also have unique ways of learning, paying attention, or reacting to different sensations. ASD begins during early childhood and lasts throughout a person's life. As the name ``autism spectrum disorder'' implies, ASD covers a continuum of behaviors and abilities.

Autism is a profound condition that can have a devastating effect on children and their families. We as a nation must devote significantly increased resources to finding answers to the many questions surrounding autism. Families struggling to raise a child with autism deserve our support, and they deserve answers. The legislation we are working to reauthorize will help us continue the journey towards a better understanding of autism and better supporting those living with this difficult condition.

The original CAA represented the largest Federal investment of funding and programs for children and families with autism . The law expanded Federal investment for autism research through NIH; services, diagnosis and treatment through HRSA; and surveillance and awareness efforts through the CDC. As a result of these efforts, we made significant advances in the understanding of autism. For example, we identified several autism susceptibility genes that are leading to drug discovery and earlier detection of infants at risk for ASD. Our Nation's researchers are now investigating the links between environmental exposures and autism . We improved methods for autism screening and recommendation for universal autism screening at well baby check-ups. We even developed effective early intervention methods for toddlers with autism .

Unfortunately, major provisions of CAA are set to sunset in 2011. Although some Federal efforts on autism would undoubtedly continue without a reauthorization, the autism community would experience a disastrous loss of momentum. Autism is the fastest growing developmental disability in the Nation. For unknown reasons, the number of children diagnosed with autism has skyrocketed in recent years, from one in 10,000 children born 15 years ago to approximately one in 110 children born today. Although it is more common than Down syndrome, childhood cancer, and cystic fibrosis, autism research currently receives less funding than these other childhood diseases.

Our reauthorization bill would ensure that these critical programs continue, including CDC surveillance programs, HRSA intervention and training programs, and the Interagency Autism Coordinating Committee, IACC. We are building upon the success of the original CAA by making additional investments in an array of service related activities. We create a one-time, single year planning and multiyear service provision demonstration grant programs to States, public, or private nonprofit entities. We establish a national technical assistance center to gather and disseminate information on evidence-based treatments, interventions, and services; and, we authorize multiyear grants to provide interdisciplinary training, continuing education, technical assistance, and information to improve services rendered to individuals with ASD and their families.

Finally, we create a new National Institute of Autism Spectrum Disorders within NIH, to consolidate CCA funding and accelerate research focused on prevention, treatment, services, and cures. A cross-agency institute with an aggressive, coordinated, and targeted research agenda aimed at improving the lives of individuals with autism is needed to address the challenges posed by a complex condition that involves many areas of science and services research. It also will provide our research community with a more predictable and accountable budget environment for disorder affecting individuals on this scale.

Over the course of my career I have had the opportunity to meet with several families who are affected by autism. The parents of children with this disorder are some of the most dedicated and perseverant I have ever worked with. They do more than simply rise to the challenge they have been presented with. They stand up and fight. They fight for themselves, they fight for their community, and they fight for generations to come, but most of all, they fight for their children. I want to thank these families and their children for sharing their stories and their strength with me. Their stories, anecdotes and struggles give a face to the people all across the country whose lives are touched by this important research, and hearing about them help us to do our jobs better. The CAA would be nothing without them.

Last but certainly not least, I would like to take this opportunity to thank the disability, and more specifically, the autism community and advocacy organizations who have worked tirelessly on this bill. The magnitude and importance of their work on this legislation and other related initiatives will never be properly recognized. There are few advocacy groups that pursue their goals and priorities with as much fervor and fortitude as this community. They have an incredibly challenging but critically important job, and I would like to thank them for their hard work and support throughout the years. None of this progress could have been made without them.

It is my hope that introducing this reauthorization bill will build momentum for the efforts of my colleagues during the 112th Congress, and I would like to thank Senator Menendez for his willingness to lead the charge into next Congress. Senator Menendez has been a great partner on so many issues over the years and I am happy that he will be here next Congress to lead the efforts on this reauthorization.

The CAA was a bipartisan, bicameral bill. That must continue next Congress. I hope that my colleagues will support this important legislation. We must continue to build upon these successes and ensure more communities are better equipped to address this complex public health issue.