The national epidemic and possible world disability pandemic of autism was the topic of a congressional hearing today before the House panel that oversees global health issues.

    Congressman Chris Smith, co-chair of the bipartisan House Coalition on Autism Research and Education (CARE) and chairman of the global health subcommittee on the Foreign Affairs Committee, held a hearing entitled “Global Perspectives on Autism - A Growing Public Health Crisis” featuring expert witnesses on autism and autism spectrum disorders (ASD). 
    
    “Here in the U.S., CDC estimates that close to 1 percent of the population is affected by an ASD,” said Smith, whose own state of New Jersey is believed to have the highest rate of autism in the country. “Autism Speaks, the nation’s largest autism science and advocacy organization, describes a scientific consensus that 1 percent of the world’s population, or 67 million people, are affected with some form of an ASD. According to the World Health Organization, ‘tens of millions in Africa’ are affected by autism. In that context, autism is a ‘developmental disability pandemic.’ It is largely under recognized, under appreciated in its impact, and under resourced.” Click here to read Smith’s opening statement. To watch the CSPAN video of Smith's hearing, click here.

    Testifying before the committee formally known as Subcommittee on Africa, Global Health, and Human Rights were: Andy Shih, Vice President of Scientific Affairs of Autism Speaks; Arlene Cassidy, Chief Executive Officer of Autism Northern Ireland; Brigitte Kobenan, Founder, Autism Community of Africa, and; Tom McCool, President and CEO of Eden Autism Services in Princeton, N.J. 

    McCool said it was his organizations goal to share the knowledge and experience gained over the past three decades to improve the quality of life of children, adults, and families impacted by autism.

    “The information is available; the technology is available,” said McCool. “Only with a united and focused effort will we be able to achieve this goal.”

    Kobenan, founder of the Autism Community of Africa, is also a mother of a child with autism.

    “In Africa, children with autism are a burden for most families and societies due to the lack of awareness, education and proper treatment,” Kobenan said. “They need to be given the necessary tools to care for themselves. Autism can be treated.”

    Shih, of Autism Speaks, discussed the scope of the disability around the world.

    “ASD transcends geographic, economic and cultural boundaries,” Shih said. “Current scientific consensus is that 67 million people, or about one percent of the world’s population is affected with some form of ASD—a prevalence that is higher than AIDS, diabetes, and cancer combined. While there is currently no known medical cure for autism, behavioral treatment programs can be quite effective, particularly when the diagnosis is made early and subsequent interventions are begun.”

    Cassidy said U.K. legislation called “The Autism Act” is significant for Northern Ireland in addressing the historic lack of strategic cohesion and is “a beacon” for the wider global ASD community.

    “There has been an absence of government ownership and leadership regarding autism until quite recently,” said Cassidy.  “The result has been a real lack of strategic planning and resourcing of autism services across Northern Ireland.”

    CARE has consistently worked to increase federal funding for autism initiatives. Funding for autism programs at the Centers for Disease Control and Prevention (CDC) has increased from less than $300,000 in 1995 to $22.1 million in 2011. During that same period autism funding at the National Institutes of Health increased from $10.5 million in 1995 to an estimated $160 million in 2011.

    Smith and fellow CARE co-chair Rep. Mike Doyle (PA), last week introduced a bipartisan package of bills designed to reauthorize the nation’s landmark program for autism surveillance, research, education and intervention; authorize new service programs; and to establish a national autism initiative: H.R. 2005, “The Combating Autism Reauthorization Act,” H.R. 2006, “The National Autism Spectrum Disorders Initiative Act,” and H.R. 2007, “The Autism Spectrum Disorders Services Act.”

    Smith also plans to introduce the “Global Autism Assistance Act” in June.

    Smith’s Autism Statistics, Surveillance, Research and Epidemiology Act (Title I, of the Children’s Health Act, P.L. 106-310)  recently marked its 10th anniversary. The law authorized grants and contracts for the collection, analysis, and reporting of data on autism and pervasive developmental disabilities. It also established the Centers of Excellence in Autism and Pervasive Developmental Disabilities Epidemiology to collect and analyze information on incidences and causes of autism and related developmental disabilities.

    The Centers for Disease Control and Prevention (CDC) estimates that one out of every 110 children (1 of 70 boys) in the United States has an autism spectrum disorder (ASD). Currently, approximately 1.5 million individuals in the U.S. are on the autism spectrum. The range and severity of symptoms of autism vary from case to case, but symptoms often include difficulties in communicating and interacting with other individuals and exhibiting repetitive behaviors and intense interests in specific subjects.

    Smith’s initial involvement with the disability came in 1998, when a Brick Township, NJ couple who had two children with autism approached him with fears that an autism cluster existed in their community. The meeting led Smith to request that the Federal Agency for Toxic Substances and Disease Registry (ATSDR) and the CDC conduct an investigation into a possible autism cluster in Brick. The investigation, one of the first federal studies on autism, showed higher rates of autism and other ASDs in Brick Township, relative to rates from previously published studies. It was also discovered that the high rate of ASDs in Brick Township was not an isolated incident, but a window to a nationwide phenomenon.