Autism Vox

This Year, An Autism Spending Surge—-What About Next Year?

by Kristina Chew, PhD on December 18th, 2007

Will 2007 go down as the year in which interest in autism reached new heights? Autism has become an issue on the platforms of presidential candidates. This year saw the introduction of the Expanding the Promise for Individuals with Autism Act of 2007, which, if passed, would provide some $350 million in supports and services for autistic persons and their families. The Combating Autism Act (CAA) was signed into law by President Bush almost a year ago on December 19, 2006; this year saw the meeting of the Interagency Autism Coordinating Committee (which was authorized by the CAA) to develop a Strategic Plan. In February, the Centers for Disease Control and Prevention presented new statistics showing that the prevalence of autism in children is now 1 in 150. From January on, a number of books about autism have been published and autism was the subject on numerous TV shows on CNN, Oprah, Larry King, and many more.

An article by Alex Wayne in the December 17th Congressional Quarterly focuses on a “spending surge on autism” in the House and in the Senate this year:

“… over the past year, the House and Senate have steadily issued directives and earmarks promoting research into autism…..

The reason lies in an increasingly effective lobbying campaign by patient advocates and parents, who amplify alarming government statistics with agonizing stories of how their children descend into patterns of repetitive behavior and rigid routines that impair their ability to communicate and relate to others.

“It’s as if one in 150 children was being kidnapped,” Bradley Whitford, a star of “The West Wing,” told the Senate Appropriations Subcommittee on Labor, Health and Human Services and Education at a hearing earlier this year. “What would this Congress do if that was the case?”

The appeals had their intended effect on the year-end crush of fiscal 2008 spending requests, as research advocates press for $37 million for autism monitoring and studies, another $16.5 million for autism screening and more than a dozen earmarks for research projects at local universities, the fate of which will be decided in the year-end omnibus spending package.

Autism advocates have in recent years largely consolidated their advocacy efforts under one umbrella organization called Autism Speaks and increased their spending on lobbying. The chief lobbyist for Autism Speaks, Craig Snyder, a former chief of staff to Pennsylvania Republican Sen. Arlen Specter, says that more members of Congress are personally connected to people with autism.

“When I started working on autism 10 years ago, there were very few members who knew anything about it and very few members who had any personal connection to it,” Snyder said in an interview. “We’ve reached the point where there’s almost no American family that’s not touched by autism.”

But the question for some public health experts is whether the incidence of autism is proportional with congressional interest.

Congressional Quarterly notes that the advocates have zeroed in on the “1 in 150″ statistic in proclaiming that autism, once thought to be a rare disorder, is now increasingly common, to the point that some claim that there is an “epidemic of autism.”

By depicting the condition as a mainstream public health threat, Snyder and other autism advocates scored a coup last December, when they persuaded Joe L. Barton of Texas, then the GOP chairman of the House Energy and Commerce Committee, to support legislation setting new benchmarks for autism research and screening. Barton has long been wary of such efforts, saying they amount to micromanaging biomedical research.

Snyder also has targeted appeals at other influential chairmen, pointing to the condition’s human toll on patients and their families, and the expense to society. His arguments are reinforced by a 2006 Harvard School of Public Health study that estimated that autism costs the country $35 billion per year in treatment and lost productivity.

Sen. Tom Harkin, the Iowa Democrat who chairs the Labor-HHS Appropriations Subcommittee that oversees biomedical research spending, cites the evidence as justification for a strong response, calling the condition a “growing menace.”

“It’s almost like an epidemic right now,” Harkin said in an interview.

But to say that autism is “almost like an epidemic”—for a politician to say this—-is a far cry from citing scientific evidence and figures that indicates a real epidemic. Some public health experts, as Congressional Quarterly notes, are wondering whether Congress is “reacting prematurely—or even overreacting”—-even while federal researchers do not know how many Americans (children and adults) have autism.

“The scientific community has yet to be convinced that there is some kind of autism epidemic,” says Roy Richard Grinker, a professor of anthropology at George Washington University who studies autism epidemiology across cultures. “Scientists do not use the phrase ‘autism epidemic.’ Advocates use it; politicians use it; scientists do not.”

A graph accompanying the article notes that “federal funding for autism research has risen faster than for other common developmental disabilities and neurological conditions.” From fiscal year 2003-2008, research funding increased by 16.1%, while for schizophrenia increased by 8.4%; by comparison, funding for Down Syndrome decreased by 43.5%.

Quoting Congressional Quarterly again: “…..the question for some public health experts is whether the incidence of autism is proportional with congressional interest.” If 2007 was the year in which interest in autism reached new heights, will this momentum continue in 2008 and beyond?

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POSTED IN: Autism Organizations, Diagnosis, Epidemic, Health, Politics, Science, Statistics, Treatment, Vaccines