The Congressional Autism Caucus hosted a Capitol Hill briefing on the recently announced increase in the prevalence of autism and a related study showing how the costs to society and individual families for autism care have soared. The briefing was conducted as Congress weighed budget measures that could cripple the ability of the federal government to continue tracking the growth in autism.
Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA), the co-chairs of the Congressional Autism Caucus, sponsored the briefing that was set up to inform Congressional staff and the public on the recent study by the Centers for Disease Control and Prevention (CDC) showing the prevalence of autism has grown to 1 in 88 children and 1 in 54 boys. In addition, Andy Shih, Autism Speaks’ vice president for scientific affairs, briefed the audience on a new Autism Speaks-funded study which found the economic cost of autism to the United States now exceeds the Gross Domestic Product of 141 nations around the globe and ranges from $1.4 million to $2.3 million per individual.
“We already know the burden on families affected by autism is enormous,” Shih said. ”The extraordinary cost further exacerbates that burden. The time and effort involved in coordinating the care and treatment plan across a large number of providers has reduced the ability of many families to earn a living.”
Shih (left) joined two CDC experts who were questioned by the audience about the agency’s commitment to match the rise in autismwith increased research. The CDC experts were also asked why the agency does not undertake more definitive research on the impact of environmental factors, including vaccines,on rising autism rates.
Jon Baio, Ed.S., principal investigator for the CDC’s Autism and Development Disabilities Monitoring Network (ADDM), and Marshalyn Yeargin-Allsopp, M.D., who heads the developmental disabilities branch of the CDC’s National Center on Birth Defects and Developmental Disabilities, defended the CDC’s response to the rise of autism, noting that 76 percent of autism research funding is provided by the federal government.
The CDC researchers said they are focusing on better identifying the risk factors associated with autism. The 78 percent jump in autism prevalence rates between 2002 and 2008 is a result of increased awareness and various risk factors, but how much each is a factor is poorly understood, said Baio.
Baio also said the CDC’s Study to Explore Early Development (SEED) is exploring risk factors by looking simultaneously at characteristics of autism, environmental factors and genes.
Congressman Smith (right) noted the “physical, emotional and economic toll” autism takes on families and caregivers, and the importance of early intervention in helping children with autism gain independence. Smith noted how federal funding for tracking autism prevalence evolved from a study of an autism “cluster” in Brick Township, New Jersey into a continuing nationwide surveillance program conducted by the CDC.
The ability of the CDC to continue that surveillance, however, is now jeopardized as a $21.3 million appropriation for the work is in danger of being cut from the 2013 federal budget. The funding had been authorized last year as part of the Combating Autism Reauthorization Act (CARA).
Shih in his remarks said the Autism Speaks-funded study was conducted by Dr. Martin Knapp, of the London School of Economics, and Dr. David Mandell, of the University of Pennsylvania. Autism Speaks has funded another year of study by the researchers to examine how the use of autism therapies reduces lifetime costs associated with autism, he said.
“Their investigation will focus on both intensive preschool behavioral interventions and vocational interventions that support an individual’s independence during the transition to adulthood,” Shih said. “Calculations will take into account costs related to healthcare, education, caregiving, housing, and employment.”
The new study will provide a clearer picture on how early intervention can reduce costs, Shih said, but noted that many individuals with autism continue to require services into adulthood. “The challenge therefore is also about being smarter with how we invest in a good care system for individuals and families living with autism.”