Five years ago, the Combating Autism Act was passed with great fanfare, authorizing a billion dollars in federal spending for autism research. The act’s proponents made clear, in language every bit as martial as its title, that the research would focus on cause and prevention. From their point of view, a holy war against autism had just been launched — a grand crusade to slay a terrifying, child-devouring demon. Autism Speaks, which was then a fledgling organization, had set forth its agenda in no uncertain terms upon its launch in May 2006: Within a decade, autism would become “a word for the history books.”
The act contained a sunset provision and was scheduled to expire on September 30, 2011. During this five-year period, scientists conducted many genetic studies and other basic research aimed at identifying potential causes of autism. As it turned out, the uncharted terrain over which the holy warrior-knights rode out to battle wasn’t quite what they had anticipated. There were plenty of interesting topics for well-funded scientists to delve into, but nobody found any dragons to slay. Like other crusades throughout history, it got harder to keep the foot soldiers obediently marching toward that Promised Land of pure-minded souls purged of their neurological differences.
When a reauthorization bill was introduced in Congress to continue the research funding beyond the original five years, the tenor of the debate couldn’t have been more different. Words like “eradicate” were nowhere to be heard. Instead, the bill’s proponents argued that the research would lead to new therapies that would help to integrate autistic people into society. Conservative opponents said that they’d prefer to see medical research funded without allocating specific amounts to autism or other conditions, so that the agencies would have discretion to spend the funds as they judged most useful. Self-advocates pointed out that the strong focus on causation research had done a disservice to the autistic population by reducing the funds available for much-needed research in other areas, such as education, communication, and service provision.
On all sides of the debate, there was a general agreement (at least publicly) that supporting autistic citizens should be a goal of autism research. The dispute had to do with how that goal might best be accomplished — whether by passing the reauthorization bill or by letting the act expire and starting afresh. In short, the war that began in 2006 had thoroughly fizzled out, leaving only politics as usual.
House Majority Leader Eric Cantor, who had made clear his opposition to funding medical research through condition-specific legislation, initially refused to bring the reauthorization bill up for a vote in the House. After a frenzied flurry of lobbying by the bill’s proponents, Cantor agreed to bring it up. It passed the House on Tuesday evening, the 20th of September, but continued to face opposition in the Senate and no prospect of a floor vote there. Because Congress was scheduled to leave for a weeklong recess on Friday evening, Sept. 23, the situation in the Senate seemed likely to cause the funding to expire by operation of the sunset deadline.
Friday came and went without the Senate having taken any action on the reauthorization bill. Other events caused the Senate to stay in session, however. Although the House had passed a continuing resolution to keep the government running at the end of the fiscal year, Senate Democrats objected to it because they were concerned that it might not provide enough money for disaster relief. Accordingly, Senate Majority Leader Harry Reid scheduled a vote on the continuing resolution for Monday. Upon finding that there was indeed enough disaster-relief money, the Senate passed the resolution. Taking advantage of the unexpected opportunity for more discussion of autism research, proponents of the reauthorization bill reached a compromise whereby Senate conservatives withdrew their opposition in exchange for greater fiscal oversight. Literally at the last minute, the bill passed the Senate by voice vote.
It’s worth noting that even under the original act (which has now been extended for three more years), federal research agencies have not been micromanaged to the extent of being required to fund specific studies; the act simply provides a general structure for making funding decisions. Thus, it remains possible that the research might at some point take a more neurodiversity-friendly direction. In any case, the discoveries made so far about the complexity of autism suggest that there is no prenatal test or other history-book event on the research horizon.
Of more interest than the actual disposition of the funds, I’d say, is what the debate has revealed about the political landscape. The cure lobby often has boasted of its vast influence in the halls of power; but when put to the test, it barely managed to squeak out a victory through a highly improbable series of events. Further, the intemperate language used (such as, among other things, calling House Leader Cantor a dishonest betrayer for not promptly scheduling a vote on the reauthorization bill) surely has burned major bridges in Congress and will have lasting repercussions. To the extent that the public has even been paying attention to the last remnants of this overblown crusade, it is now obvious that autism’s would-be emperor has no clothes.
related: Which War Are We In: Good vs. Evil, or The One vs. The Many?
related: The Autism Gene: Maybe Not So Scary
[image via Flickr/Creative Commons]
Gwen McKay on 09/30/11 in featured, Politics | No Comments | Read More
