The New Autism “E” Word
April 20, 2007 by Kristina Chew, PhD
Filed under Health
News that may turn out not to be about autism—-whether or not Cho Heung-Sui ever received an autism diagnosis—-took the spotlight from what seems like almost anything else about autism this week, the third week of Autism Awareness Month 2007. On Wednesday and Thursday, April 18th and April 19th, the Institute of Medicine (IOM) held its workshop on “Autism and the Environment: Challenges and Opportunities for Research.” The Chronicle of Higher Education reported today on the workshop in an article with the headline of Federal Agencies Pledge to Study Whether Environmental Factors Trigger Autism—-as the Chronicle noted, it is a “marked shift” for federal officials and agencies to say that “they have paid too little attention to the possibility that toxins or other environmental factors cause autism.” In a study three years ago, the IOM rejected any connection between autism and childhood vaccines or thimerasol, mercury-based preservative.
William Raub, science adviser to the U.S. secretary of health and human services, is quoted as saying that the meeting is a “‘turning point’” and that it “‘is giving a higher profile to the possibility that environmental agents are contributing either by causing some forms of autism or by exacerbating autism that might have occurred anyway.’” Pat R. Levitt, a professor of pharmacology at Vanderbilt University who is studying the genetics of autism, said that “‘There is a lot to be learned from listening to families and clinicians.’” As “parental advocates have complained in the past of being overlooked by federal agencies that sponsor research on autism,” such advocates were present at the IOM workshop: “Representatives of groups such as the National Autism Association (NAA) and Autism Speaks literally had a place at the table this week with the NIH officials and leading academics.” That is to say, parent advocates were present who (as can be ascertained from NAA’s webpage on the causes of autism) believe that thimerasol and vaccine are causes of autism. (Indeed, a Board Member of the NAA and the Director of Planning Committee for the IOM workshop.)
The entire IOM workshop could be heard via webcast; I was unable to hear most of it, as I was either teaching or traveling to and from work (to get home to meet Charlie’s bus). The full text of the Chronicle article is only available by subscription; you can read the workshop agenda and also download the PowerPoint presentations made by some of the panel participants. I have only started to go through the presentations.
In the presentation by Susan Swedo, M.D>, Pediatric & Developmental Neuropsychiatry Branch, National Institute of Mental Health, a slide contains a graphic which says a lot:
Environmental Trigger (Identified and removed) ——- >
Genetically Susceptible Host (Biomarkers/diagnostic tests) ——- >
Neuronal Dysfunction +/- Damage(Prevented) ——- >
AUTISM(Prevented)[My apologies to Dr. Swedo for this attempt to represent the graphic on the slide.]
Environment is the new e word in autism.
I listened to most of the workshop. Very smart scientists talking about gene-environment interactions, and one particular group of parents (i.e., SafeMinds). And why shouldn’t they be discussing it? Complex phenomena like autism don’t follow Mendelian genetics. It’s a truism that there are gene-environment interactions. So there was nothing suprising to me that came out of the workshop. The good news for the participants was that the tension between that group of parents and scientists seemed to lessen (that was certainly one of the goals of the workshop). The bad news for the participants is that the study of enviromental factors is so formidable (environment can mean virtually anything in the world of the fetus or child)and research on environmental factors in other complex phenomena (like schizophrenia, for example) has produced so few results, that one wonders if the money for autism research will be used most efficiently. Perhaps the most insightful comments were made by the scientists who said that autism hasn’t even been adequately described as a set of phenotypes. So they are looking for needles in haystacks, but it’s even worse than that. Unfortunately, they are not even sure yet what haystacks to look under.
Hi, Kristina. That is just something I do not want to listen to. They don’t even know where to start. Sad.
Chris from Write and Whine
Or if we should even be looking under a haystack and not at something else……
If I had been present at the workshop, I would have liked to have emphasized that, along with this greater focus on autism and the environment—and the mention of biomedical treatments—the need for educating autistic children in the best manner possible remains. I’ve heard of parents whose children are older—my son’s age, and he is almost 10—who have concentrated mostly on biomedical treatments for the early years of their child’s life and (while the child has been in an educational program) have perhaps not considered as many educational options as they might have.
That seems to me to be one of the sad fallouts of a “cure” mentality- while many of us who choose educational & behavioural interventions for our kids (& basicallyy accept their autism as part of them) are looked-down-upon for “doing nothing”, doing biomed alone is not addressing the child’s needs in the present, not helping them for the future. The comments about needing to find the haystack first would seem to underline that there needs to be less absolutist thinking about autism & a cure, & more flexibility about how it’s thought of right now. We can’t dwell in the future & ignore the present…
Three problems with the conference, in my view. Sorry for writing so much. First, the remarks of some of the parents (again, this is just one group of parents with political connections, deep pockets, and loud voices)indicate that they believed the workshop was organized to encourage research on how environment contributes to changes in prevalence. But the scientists interested in the environment side of the gene-environment interaction are interested in how environment influences autism, not changing prevalence rates. Second, no scientist objected to anything a parent said — at the end it was something of a free for all — because one of the goals of the workshop was to mend the conflict between this one particular group of parents and the scientists.
they even permitted one parent to say that it had proven (!) that changes in diagnostic concepts, diagnostic practice, etc. had not contributed to changes in reported prevalence. No one has proven anything one way or another. Third, and the biggest problem, this is just one small group of parents. What about autistic adults? Why were they not included? What about the parents who don’t buy in to the safeminds agenda? What about the families who are not as rich or connected as the safeminds crowd and cannot travel all over the country and make themselves heard? The bottom line: it’s easy to essentialize “scientists” and “parents. ” when, in fact, they are a heterogeneous and diverse group. The IOM workshop contributed to this essentialism. Those scientists who spoke at the workshop are just one small group of particular scientists. And those parents are just a small group of particular parents.
Lisa: It does seem to me that, even if a child does make (seem to make) a lot of progress due to some biomedical treatments, the child still has to be educated. Still has to go to school, still has to learn—-everyone needs a quality education. One parent who had done a lot of biomedical started to do ABA when their child was older and told me, “I see what you mean about it.”
Richard, thank you for writing a lot. In the short segment I caught (on Wednesday just before noon), I got something of the sense of the interactions you note between the scientists and the parents. Some parents made statements about vaccines, chelation, and so forth without any comment or actual response from the scientists, and the lack of a response seemed to (sort of) condone what was said.
So very few parents can actually attend anything like a conference (and when they do, are more likely to make the time and arrangements to go to something that can have more practical applications for their child).