Well Being

Autism Speaks Now

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Autism Speaks to merge with DAN!……….

That is not true, or not yet true: It is a prediction I made half-seriously to a friend last week after I saw that Autism Speaks was promoting the Discover Magazine article on autism not being just in the head. “Autism Speaks congratulates these researchers for their important contributions to changing the way autism is conceptualized,” the Autism Speaks website noted, and then “It will only be through support of such innovative research [on ‘brain and non-brain systems'] that the causes and biological basis of autism will be resolved.” I had this statement in mind as I watched the new Autism Speaks video, A World Where….., with its absolutist pronouncements of “making autism a word for the history books” and of creating a world in which “no family has to live with autism”—a world, that is, in which, with both cause and cure known, there would be no more autism; in which autism, having been combatted, would be defeated.

Autism Speaks has indeed gone biomedical, with the April 5th announcement that Katie Wright-Hildebrand, daughter of Autism Speaks co-founders Bob and Suzanne Wright, is now on the boards of the National Autism Association (NAA) and of Safe Minds, two organizations that advocate for a link between autism and mercury. Wright-Hildebrand's statement on the April 5th Oprah that vaccines are the cause of her son becoming autistic further suggests that we will be hearing more about this particular theory of autism aetiology, despite (as was pointed out by pediatrician and autism mother Dr. Anshu Batra on the show) there being no (at least not yet) valid scientific evidence for such a connection.

We already have heard a great deal about such a link. As a study by Stanford University researchers published in the February Nature Reviews Neuroscience notes, brain and behavior research on autism accounts for 41 percent of research funding and published scientific papers and only 11 percent of newspaper stories in the United States, United Kingdom and Canada. In contrast, 13 percent of published research was on environmental causes of autism but 48 percent of the media coverage was on this topic: When it comes to reporting on autism, there is a serious gap between scientific research and the mass media; in the case of some reporting on thimerasol and autism, parents are pitted against scientists. Autism Speaks, with its access to the full power of the media, will be getting its message out.

There is a lot more to the science of autism than mercury and vaccines, as more than a few commenters here have been noting. The “vaccines cause autism theory” is quite straightforward to present, as it emphasizes a clear cause (a vaccine or a mercury-based preservative, thimerasol) and effect (a child becomes autistic). In contrast, research studies in neuroscience and genetics do not offer such simple and direct answers about autism, and often seem only to add to the complexity; at such times, I am very glad to be able to turn to a scientist (and, indeed, to a genetic epidemiologist).

The April issue of Science contains an article (available if you have a subscription) by Chris Mooney and Matthew Nisbet, Ph.D., on what I'll refer to as the disconnect between science (and scientists) and the public. Chris Mooney writes The Intersection and is the Washington correspondent for Seed magazine; Matthew Nisbet writes Framing Science and is a professor in the School of Communication at American University. Writes Mooney:

Nisbet and I are advising scientists to start to actively “frame” their knowledge, especially on hot-button issues like evolution, global warming, embryonic stem cell research.

On these highly politicized topics, scientists need to stop thinking that technical knowledge, alone, suffices to drive decision-making or change minds. That's simply not how the media works, or how the public perceives and processes information. The article (which I'll post as soon as available) ends with this coda:

Some readers may consider our proposals too Orwellian, preferring the traditional model of safely sticking to the facts. Yet scientists must realize that these facts will be repeatedly misapplied and twisted in direct proportion to their relevance to the political debate and decision-making. In short, as unnatural as it might feel, in many cases, scientists should strategically avoid emphasizing the technical details of science when trying to defend it.

I would be curious as to how scientists might “frame” some “hot button” issues in autism: As the back-and-forth in the comments on a post about David Kirby and Autism Speaks, facts and research studies can be cited, but people's beliefs are not so easily swayed. What are vaccines and chelation but “highly politicized topics” in autism circles? How might a scientist refute such theories and treatments by “strategically avoid[ing] emphasizing the technical details of science”; by translating technical knowledge with an eye to the fact that this alone does not “drive decision-making or change minds”? It needs to be recognized that, when it comes to understanding autism, parents do not rely on facts and evidence and science alone; that emotions—however much acknowledged, or not—play a huge role. Thus, for instance, did Wright-Hildebrand say on Oprah:

“This is the national health crisis of our time……..This is bigger than AIDS. This is bigger than breast cancer, and almost no attention seems to be paid to it.”

The evidence of a multitude of autism organizations, books, blogs, academic journals, conferences, etc., etc., etc., would suggest that attention has been paid to autism, and certainly since autism entered Wright-Hildebrand's life in the past few years. But I know what she means: When you are the mother of an autistic child who is having a moment on the sidewalk, and strangers are staring at you without compassion and understanding, you can feel very alone. Very, very alone, despite the evidence to the contrary that—now that there are more autistic children than ever (1 in 150, 1 in 94 here in New Jersey where I live)—-there must be more parents or aunts or uncles or grandparents or teachers or therapists or aides or bus drivers or piano teachers, etc., of autistic children everywhere.

And with so much autism everywhere—so many more autistic persons accounted for and visible—I do hope that Oprah might present another show on the “many faces of autism,” and perhaps with faces other than appeared on this week's show (of autistic adults?), and with perspectives about life with autism that emphasize not the “crisis”—not the darkness—but the light. I have seen the Autism Every Day video that was shown on Oprah more than a few times as it has been viewable on Autism Speaks's website for the past several months; I would much like to know how the children in that original video are doing now, especially as regards their education. What kind of schools do they attend? What have they learned? What have they struggled with? What works best?

I guess I am being a bit selfish here; I am curious as to the children's educatio as, since “the video” appeared, my son has had four different teachers and been in four different classrooms. He is now thriving and, if anything, a bit nervous that there is no school today, April 6th, as it is a religious holiday. He is also nearing his last month of being 9 years old, as my son Charlie will turn 10 on May 15th and, as he has gotten older, we have gradually relinquished more of the biomedical sort of “treatments” in favor of his education and in loving, unconditional acceptance of the lovely boy that he is; the boy who, on a walk with snow flurries this afternoon, said “Mom” and held my hand.

My family lives with autism, and life is good. With words and without, Charlie speaks often–speaks now—to me, and this is autism speaking, now.