Federal Report to Congress Confirms Urgent Need for Reauthorization of the Combating Autism Act of 2006

Proposed National Institute for Autism Spectrum Disorders a Model for Fiscal Responsibility

New York, NY (January 11, 2011) – A Report to Congress issued by the Department of Health and Human Services confirms that the Combating Autism Act of 2006 (CAA) resulted in significant advances in the understanding of autism spectrum disorder (ASD), as well as progress in identifying both best practices and the need for more supports and services. Citing the report, officials from Autism Speaks, the nation's largest autism science and advocacy organization, again called on Congress to pass the Combating Autism Reauthorization Act (CARA) swiftly at the beginning of 2011 to avoid a disruption of important autism research, intervention and surveillance programs that will sunset with the original CAA on September 30. The reauthorization, S. 404, was introduced at the end of the 2010 Congressional session by Senators Christopher Dodd (CT) and Robert Menendez (NJ) and currently has the support of more than 35 autism, academic and other advocacy organizations.

Federal efforts authorized by the CAA have led to improved understanding of the causes and treatment of ASD, reliable prevalence estimates, and large-scale data collection and sharing efforts that are empowering researchers and health practitioners with knowledge not available only a few years ago. The Report states that a continued rigorous focus on identifying genetic and environmental risk factors for ASD will yield innovative treatment and prevention strategies. Services and supports programs across several Federal agencies are actively identifying best practices and implementing programs to increase quality of life for people with ASD across their lifespan.

“The Combating Autism Act of 2006 (CAA) was a clear statement by the U.S. government on the scope of the public health emergency posed by the growing prevalence of autism and the lack of adequate research, effective treatments, and services to address this crisis,” said Peter Bell, Autism Speaks executive vice president of programs and services. “As the Report to Congress states, significant advances have been made, but continued intensive focus is essential to solving the puzzle of autism. We must build upon this important progress until we have found the answers we need.”

Among the key provisions of the CARA is the creation of a National Institute of Autism Spectrum Disorders Research (NIASD) within the National Institutes of Health (NIH), the federal government's medical research agency. This single, unified entity would bring all federally-funded autism research activities under one roof and foster strategic coordination – and improved efficiency -- across the many lines of scientific inquiry required to find the answers needed about autism.

“Autism Speaks is seeking to include unprecedented statutory language for transparency and accountability in the use of taxpayer funds to pursue an intensified effort to address the urgent health crisis that autism has become,” added Bell. “We believe that these measures are a model for fiscal responsibility and will receive bipartisan support.”
Reauthorization through enactment of CARA would also continue the work of the Interagency Autism Coordinating Committee (IACC), a mechanism for coordinating efforts on autism research across federal agencies, as well as the mandate for a strategic plan for autism research that is updated annually. In addition, CARA would continue to hold the federal government accountable in its efforts to improve the lives of persons with ASD through research. Through CARA, physical and behavioral health intervention networks would continue the development of clinical care practice guidelines, clinician training and research on effective treatments. CARA funding would augment support for the University Centers of Excellence in Developmental Disability (UCEDD) to promote training and dissemination of best practices in ASD screening, diagnosis and treatment, and would support research on autism's causes, prevention, treatment and cure.

"The Combating Autism Act has made possible important research that has greatly improved our understanding of autism, including the study of its potential causes, enhanced diagnostic methods and additional treatment options,” stated Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D., who is also an IACC member. “Additional funding through the reauthorization of CAA is essential to further our understanding of the causes of autism, how multiple risk factors may be at play, and to translate that knowledge into effective treatments to alleviate the symptoms that limit an individual's potential for a productive and independent life."

The CAA was signed into law by President George W. Bush on December 19, 2006 following unanimous votes in the House and Senate. It made autism a public health priority by authorizing nearly $1 billion of federal spending over five years on biomedical and treatment research on autism and requiring the development of an overall strategic plan for the intensification, expansion and better coordination of federal efforts designed to help persons with autism and their families.

Significant advances under the CAA included: identification of several autism susceptibility genes, leading to increased drug discovery efforts and earlier detection methods; improved autism screening methods and universal screening recommendations; development of effective early intervention methods for toddlers with autism; and best practice standards of care for medical and behavioral health clinicians as well as new treatments for commonly associated medical conditions, such as sleep and gastrointestinal disorders.
To learn more about Autism Votes, an initiative of Autism Speaks focused on federal and state legislative advocacy, please visit www.autismvotes.org.

About Autism
Autism is a complex neurobiological disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, affecting four times as many boys as girls. The prevalence of autism increased 57 percent from 2002 to 2006. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

About Autism Speaks
Autism Speaks is North America's largest autism science and advocacy organization. Since its inception in 2005, Autism Speaks has made enormous strides, committing over $142.5 million to research through 2014 and developing innovative new resources for families. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. In addition to funding research, Autism Speaks has created resources and programs including the Autism Speaks Autism Treatment Network, Autism Speaks' Autism Genetic Resource Exchange and several other scientific and clinical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2, which Autism Speaks celebrates through its Light it Up Blue initiative. Also, Autism Speaks award-winning “Learn the Signs” campaign with the Ad Council has received over $249 million in donated media. Autism Speaks' family resources include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit and a community grant program. Autism Speaks has played a critical role in securing federal legislation to advance the government's response to autism, and has successfully advocated for insurance reform to cover behavioral treatments in 23 states thus far, with bills pending in an additional 14 states. Each year Walk Now for Autism Speaks events are held in more than 80 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.

About the Co-Founders
Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners, Chairman and CEO of the Palm Beach Civic Association and served as vice chairman, General Electric, and chief executive officer of NBC and NBC Universal for more than twenty years. He also serves on the boards of the Polo Ralph Lauren Corporation, RAND Corporation and the New York Presbyterian Hospital. Suzanne Wright has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, such as the CHILD Magazine Children's Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine's National Women's Division and The Women of Vision Award from the Weizmann Institute of Science. In 2008, the Wrights were named to the Time 100 Heroes and Pioneers category, a list of the most influential people in the world, for their commitment to global autism advocacy. They have also received numerous awards such as the first ever 'Double Helix Award for Corporate Leadership, NYU Child Advocacy Award, Castle Connolly National Health Leadership Award and The American Ireland Fund Humanitarian Award. In May of 2010 they received Honorary Doctor of Humane Letters Degrees from St. John's University in Queens and delivered the commencement address as the first married couple to be bestowed such an honor.