In a move that could have far-reaching implications for children with autism and their beleaguered families, the Combating Autism Act passed unanimously tonight in the Senate after months of behind-the-scenes wrangling between autism advocates and Texas Republican Rep. Joe Barton. The bill, which authorizes almost $1 billion for autism research and programs, cleared the House yesterday. Autism is a spectrum of disorders that affects at least one in 500 American children and has no known cause and no known cure.
Autism advocates are overjoyed. "It's a huge day," says Alison Singer, senior vice president of Autism Speaks, whose 9-year-old daughter has autism. "I think this is the most important thing we could do short of finding a cure."
Researchers, too, are excited by the possibility of new funding. "The prospect of having an infusion of funds, particularly right now when the NIH [National Institutes of Health] is having to cut back so dramatically, is incredibly encouraging," says Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center. "There are so many areas where researchers are getting closer and closer to figuring out what causes autism, or the 'autisms,' but they need money and more staff to get over the hurdle."
The bill will send millions into autism research, authorizes a national public-awareness campaign designed to educate parents about the disorder and sets up screening programs in all 50 states to assist with early diagnosis and intervention. It also stipulates that an already existing committee that oversees federal autism research will include at least one person with autism and one parent of a child with autism.
First introduced in the Senate in 2005, the bill has a long and complicated history. Viewed by many as the culmination of years of autism advocacy by parents groups, the original version contained detailed directives for how the NIH should spend the money, including a specific directive to spend $45 million researching possible environmental causes. Although that version passed the Senate unanimously in August, Representative Barton, head of the House Committee on Energy and Commerce, said it conflicted with his own proposal to reform the NIH and blocked the bill from a vote. This led to a backlash against Barton from autism families and their high-profile supporter, radio personality Don Imus, who berated Barton daily on his show. Larry Neal, Barton's spokesman, said the public thrashing was unnecessary. "We'd been saying from the start, that a compromise seemed entirely possible. We didn't make demands or call anybody names. We just thought both sides could get most or all of what they needed if the rhetoric didn't become distorted from overheating."
Last month, a compromise version of the bill was agreed to by Barton and a coalition of autism groups, including Autism Speaks, Cure Autism Now and the Autism Society of America. The new Combating Autism Act of 2006 authorizes slightly more than the $924 million in the original bill (the new amount is $945 million) but has fewer specifics about where and how the money should be spent. The bill authorizes Congress to spend the money over the next five years, but they must vote each year to appropriate the funds. "Passing the act is a necessary first step," says Craig Snyder, Cure Autism Now's chief lobbyist. "This is the battle plan to win the war against autism, and now it's the law of the land."
Advocates like Snyder are optimistic that funds will be in the hands of researchers as early as next summer. In the meantime, autism activists are reveling in their triumph. "It's a very sweet moment, says Jon Shestack, cofounder of Cure Autism Now and father to Dov, 14. "This is drafted by parents, it's driven by families and parents. It's not corporate lobbyists. It's really the power of the people to influence their representatives. So from that point of view, just to know that if you're an American who has a good cause and a lot of tenacity, you can get something done."