Autism Research Funding Narrowly Saved, but It's Not Enough

on September 27, 2011 at 12:48 AM

autism When as many as 1 in every 110 children in this country is diagnosed with some form of autism, you can't argue that it's not a national health crisis. How to treat and research the cause and a potential cure for autism, however, provides plenty of fodder for argument, as evidenced by a recent bill in the U.S. Congress.

After passing last week in the U.S. House of Representatives, the Combating Autism Reauthorization Act was being stalled in the Senate because two Republicans -- Sens. Jim DeMint, R-S.C., and Tom Coburn, R-Okla. -- opposed it. If they hadn't come to an agreement to extend the program, $231 million in grants for autism research and education per year could have been halted October 1. Naturally, there was a fair bit of anxiety in the autism community.

Then earlier this evening, the Senate struck a deal and sent it to President Obama for his signature, so the funding will continue for three more years. That's good news ... in some respects.

Kim Stagliano is the mother of three daughters with autism and a member of the Combating Autism Act Reauthorization Coalition. She said the funding provided by the act isn't used efficiently and she would have rather seen a shorter extension so that it could have been reworked and the money better spent.

"I can tell you that in the five years since CAA passed, we haven’t made an inch of progress in the battle, in large part because the NIH has become captured by a failed school of orthodox science in autism," she told The Stir. "In these austere times, reauthorizing a broken bill for three years doesn’t make sense. Instead, a one-year extension would allow time to rebuild the act to better meet the needs of American families facing the daunting challenges of autism in terms of adulthood and life care, treatment, and prevention."

Others see the act's reauthorization as a victory. But even with it, there are so many more battles ahead -- for families, for the government, and for the individuals with autism themselves that this act doesn't address. Autism isn't going away; it's becoming more prevalent, and we've got do more.

While perhaps not ideal, a three-year extension is better than funding being completely cut off, better than doing nothing. Because when it comes to autism, we have to do everything in our power to help support families living with it and prevent future families from ever having to do so.

Are you glad to see a three-year extension of the Combating Autism Act pass the Senate?

Image via Beverly & Pack/Flickr

About the author Julie Ryan Evans

can be found writing from coffee houses wherever she may be. The quality of her days is largely influenced by the seat she nabs and whether a protein plate is available.

Filed Under: autism, in the news

Comments (24)

Facebook comment from Leanne Carnegie

on Sep 27, 2011 at 10:16 AM

I'd have to read into it more, but off the bat it doesn't sound like a good thing. First of all, when did the federal government become a bank account for pet projects? As Ms Stagliano pointed out, the money isn't used effeciently... Government money (aka taxpayer money) never is. They are better off fund-raising on their own... which is exactly what organizations should be doing. There's too much bureaucracy and corruption surrounding any funding by the federal governement... not to mention our HUGE deficit.

I'm all for funding research and everything, but it needs to be done privately and leave the government to focus on the jobs they should be doing.

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Facebook comment from Lisa Starrfield

on Sep 27, 2011 at 7:13 PM

Leanne, The government has funded research for years. Most pharmaceutical research is paid for or partially paid for by the government. As is most scientific and medical research.

Facebook comment from Anne Dachel

on Oct 3, 2011 at 10:18 AM

I feel that best we can say about this is that it's better than nothing. Not too long ago the Interagency Autism Coordinating Committee, created by Congress under the old CAA, called autism a "national health emergency." Emergency? Really? Seriously, when has autism been considered an emergency in the U.S.? For years, as the numbers exploded, doctors said nothing was wrong and they took all the credit, saying it was because of their "better diagnosing."

No one at the Centers for Disease Control and Prevention or at the American Academy of Pediatrics has ever called autism a crisis, let alone an emergency. Regularly news reports tell us that there's been no real increase in autism. Doctors are never alarmed over almost a million children out there now with autism. Millions of dollars goes into genetic research for a disorder that's exponentially increasing. Experts acknowledge that there "may be" environmental triggers, then they all stand around scratching their collect heads over what the trigger/triggers might be.

Everyone needs to remember AUTISM ISN'T GOING AWAY. The cost is an almost impossible burden now. Imagine what it's going to be like in a couple of years when the first wave of autistic young adults impacts social services.

The U.S. has ignored the epidemic of children with autism. They're not going to be able do that with adults with autism. Everyone will be paying and paying and paying.

Anne Dachel, Media editor: Age of Autism

Facebook comment from Lbrb Sullivan

on Oct 3, 2011 at 6:17 PM

I find it more than a little ironic that Ms. Stagliano brought up the "Combating Autism Act Reauthorization Coalition." It's a non-organization. A website that had some activity about a year ago and then was basically abandoned. The organizations involved wanted to push for vaccine-causation research. When they found it wasn't going to happen, they dropped support for the CAA and CARA.

They haven't bothered to update their "news" since last December. Nothing about CARA passing the House, the Senate or being signed into law.

Anne Dachel is right about one thing. Autism is not going away. Not with all the strange therapies her organization promotes and advertises. We need good research into a good understanding of what autism is. Not the back-of-the-envelope musings of a group of businessmen who can't seem to understand that their ideas failed years ago.

Kim Stagliano is wrong about the progress made since the CAA was enacted. In one very important area, we have made great strides. We know that thimerosal didn't cause an autism epidemic. We know that the MMR doesn't increase the risk of autism. Ms. Stagliano wants to turn back the clock to the year 2000 and pretend like we haven't debunked the theories her organizations still espouse.

As a taxpayer and as the parent of an autistic child, I don't want to see money thrown away chasing the same old disproven ideas. Progress doesn't come by ignoring scientific advances. Ms. Stagliano would lead us boldly into the past, on a path we know is fruitless.

elasmimi

on Oct 12, 2011 at 1:23 PM

The one thing I agree with is that autism is not going away. But as pp so wisely noted, there is no sense throwing away money rehashing old topics. I am all for more research, and will be the first to admit I don't know how it should be funded. The government is going bankrupt, and I believe individuals must step up to the plate. We have done well in the area of making people more aware of autism, now let people put their money where their mouth is. I do.