Combating Views on the Combating Autism Act
December 5, 2006 by Kristina Chew, PhD
Filed under Health
A report on the Combating Autism Act in today’s NPR by Julie Rovner describes the long and winding path of this bill on Capitol Hill as an example of “an almost age-old tension on Capitol Hill — whether scientific priorities should be based more on the political process or medical expertise.” Autism mother Elizabeth Emken objects to the view that the House’s bill, which gives scientists more authority to setting research priorities, and the Combating Autism Act are incompatible. She says:
“Human suffering is not a competitive sport, but what makes autism different? What makes autism different is the history of neglect into the disorder. It’s remained such a mystery that science has been very slow to address it.”
Emken, who is on the board of the soon-to-become-part of Autism Speaks organization Cure Autism Now, draws on the rhetoric of the stolen, “kidnapped” child to illustrate the urgency of what she terms a “true national emergency,” the increase in the prevalence of autism.
The Combating Autism Act—-which doubles the money to be allocated to autism research and calls for all 50 states to have screening, surveillance, and early intervention for autism—was unanimously passed by the Senate last summer. Then, “a funny thing happened to the autism bill on its way to the House”:
It ran headlong into an effort by a key committee chairman to overhaul the way the National Institutes of Health funds medical research.
The NIH has long been a bipartisan favorite on Capitol Hill, but that Congressional largesse has often come with strings attached — more money, but to study particular diseases, like autism, for example.
Many doctors and scientists, however, say that’s simply not the way science works best. Leo Furcht is president of the Federation of American Societies for Experimental Biology, one of dozens of scientific groups supporting the NIH bill, which passed the House in September with only two dissenting votes. Furcht says while he’s sympathetic to parents of children with autism or any other ailment, bills that fund only a single disease simply don’t make sense.
Autism father Wade Rankin offers a much more thorough analysis of the combative debate surrounding the Combating Autism Act; he notes that “politics has turned something that should be uniting the greater autism community into a wedge,” with radio host Don Imus and his wife, Deidre, having stepped into the fray.
What stands out to me in all of this is what an “autism advocate” is understood be. Don Imus, for instance, is termed one of the “leading voices in the autism advocacy community”—-if you define autism advocacy as advocating for treatments, a cure, and prevention of autism, and blaming vaccines for causing autism. I have written before that autism advocacy can and indeed ought to be something more than the notion of “combating” and “fighting” autism (in Advocacy Starts Right Now). What about advocating for those who are autistic now like my son, Charlie, who will be autistic for his lifetime? What about advocating for the best possible education and other services for autistic persons now, as autism parents Cathryn Garland and Michael O’Hanlon wrote a few weeks into a New York Times op-ed? It is hard to be against more funding for autism but what if we focused instead on what autistic persons need now rather than on eliminating autism altogether—-on not framing autism as a “national emergency” but a national responsibility to best teach autistic persons to lead full and good lives.
Kristina, in order to make things happen in Congress you gotta have a very strong, organized lobby, or an overwhelming public/media support to a certain cause. Politicians act by pressure by their constituents or peers, or general public opinion.
So there’s only one option for the folks that want to have any influence in Washington and are unsatisfied with Autism Speaks’ stance: organize, outreach. Be professional. Get help from PRs, writers, activists.
Thanks, Leila. What are your thoughts on the CAA?
Starting at the grassroots level here….
Geez, I’m not a policy maker, but as far as I can tell the measures included in the bill are beneficial, and the organization’s networking was very successful. The word “combating” sounds even worse than “cure”, but right now I can’t come up with a different slogan that would be powerful and appealing enough.
I understand that you feel the research would be more focused on “prevention” and “early intervention” rather on addressing the needs of autistic older children and adults. However the research on better medications and behavioral/social skills therapies can also improve the lives of autistic individuals of any age.
There’s another positive side. By putting autism in the national spotlight, this bill might also help the other autism groups/points of view to be heard in major news stories. Those groups have to seize this opportunity.
If I’m kidnapped, I want my fairy powers.
The CAA needs to be seriously rewritten.
Or is there a provision that we will magically go back to our fairy parents when we turn 18? I sure didnt go back to mine.
(yep, eugenics and boondoggles make me snarky)
Thanks again, Leila—-I’ve the interest in, and the wish for more emphasis on, education and services for adults and older children as all of our kids are only going to get older. While I would prefer something besides the language of “combating” and “cure,” it is indeed good to see autism mentioned in the national spotlight. Of course early intervention is a sine qua non but—-as an autism consultant said to me—-”early intervention” now extends to high school age…..
I just wanted to add an example to show how research is focused on more than prevention and early intervention. Take the study on oxytocin for instance… It’s being done in autistic adults by the Mt. Sinai School of Medicine in New York with great results. Not only it seems to reduce obsessive and repetitive behaviors and anxiety, but it also helps develop theory of mind.
Oxytocin is a hormone that plays a role in bonding, social memory and social cognition.
If more studies support those results, and the medication becomes mainstreamed, this will improve lives of autistic people throughout their life span. I think this is exciting news.
If I cant get to my home planet and i don’t get services (they aren’t in there, at least not in any meaninful form), and no autistics get actual input (it’s in there but they’ll diagnose hilary or something and decide that counts) then I at least want my powers.
Seriously.
IT ISN”T JUST CHILDREN.
1 1/2 million autistics.
1 million of us are adults.
Want us marching on washington? We have good argumentative skills, many of us. Or browbeating skills.
I’m with Kassiane on this. I am infuriated by the “fighting” language used in the bill & am not confident that anything built on such a foundation can be as helpful or healing as it needs to be. It may be naive, but my Jedi instincts tell me that the way we think of things is the way they become, & if the country at large thinks we’re “combating” autism then combat we will. I no more want my son to be the target (beneficiary?) of such legislation than I would want him to be canon-fodder in some foreign war. I know that our acceptance point of view is being ignored because when I finally heard back from Hillary, after sending her an email last summer explaining my objections to the wording of the bill, what I received was a “proud sponsor” form letter that addressed none of my concerns. Oops- naive again, to think my esteemed representative would actually read what I had written… I agree with Leila that we need to become organised & stronger, but I’m dead against the drama that has gotten AS all their publicity. I guess the message that families & individuals can grow & thrive while living with autism just doesn’t have the pizazz of theirs…
Now that the bill has passed the House (see Texas lawmaker works out compromise on autism bill) we will see what course things will take—-it will be interesting to see how the “regional centers of excellence for epidemiological research” are developed.
Idiots in congress…
I demand transportation back to my faerie parents. Since all the rhetoric is that we’re changelings. Fine. Find where those of us who had the audacity to grow up belong and transport us there.
This means you, Ms Clinton.
I agree that we need to understand autism and make way for accepting our children and providing better education that understands autism. I have noted to re-term the act to “The Understanding Autism Act.” But I’m not an American.