Monday, April 18, 2011

More on "The Geneticization of Autism"

In Saturday's post I quoted at length from Kristin Bumiller's 2009 article "The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy", which explores the social and political implications of a largely genetic understanding of illness and disability. I think almost all the ideas she develops in that article have merit, especially her points about the limitations of a public-health system modeled on the larger consumer economy, and about coercive, eugenic aspects of genetic testing as it is used today in the U.S.

But there was one part of the article that really bothered me, and that's what I'm going to talk about in this post.

Here's the relevant passage:

The most divisive expression of dissent to geneticization is found among groups that seek to document environmental causes of autism, such as the use of mercury in vaccines. These outsiders, dubbed the "Mercury Moms," are engaged in insurgent activism against the medical establishment and most directly the Centers for Disease Control and Prevention (CDC). They claim that the CDC has perpetuated a cover-up of medical evidence confirming the link between thimerosal (a mercury preservative previously used in many childhood vaccines) and the increase in autism. In stark contrast to professionals, parents and activists who subscribe to a genetic understanding of autism, the Mercury Moms are frequently characterized as hysterical and antiscience (Kennedy 2007; Desmon 2008). As Ken Plummer (2001) has suggested in his account of what he calls "intimate citizenship," this kind of very public debate over controversial issues demonstrates that there is something much grander at stake than the validity of scientific research. For the Mercury Moms, their activities fulfill their role as protectors and provide assurance that they have pursued all avenues to help their children. As activists, the Mercury Moms are often marginalized by the media, national autism advocacy groups, and the professional establishment, not only because they dispute official information but also because they amplify the fears of all parents about the possibility of seemingly benign choices, such as complying with childhood vaccination recommendations. Their advocacy is even seen as dangerous because it could lead to widespread rejection of vaccinations that prevent the resurgence of deadly diseases. In part, the marginalization of the Mercury Moms results from their own tendency toward absolutism, but at the same time there is little mainstream recognition of scientific evidence that supports the possibility of links between exposures to toxins and autism (DeSoto and Hitlan 2007).

I know she's writing an academic paper, and a social-science one at that, so she has to be neutral and objective in her language in a way that a blogger doesn't, and that the truth or falsehood of any given hypothesis about autism's root causes is beyond the scope of her article, but it still reads to me like she's giving the much-discredited thimerosal hypothesis equal weight with the prevailing notion that genetics probably play a role in autism.

(I also think she greatly overstates the extent to which most autism researchers think of autism as being 100% genetic*, or the extent to which genetic variations associated with autism are necessarily inherited.)

Most troubling to me is this phrasing, "... environmental causes of autism, such as the use of mercury in vaccines." Using what may be the most exhaustively debunked hypothesis ever to be proposed as an explanation for autism as an example of bias against research into possible environmental causes, triggers, or correlates of autism strikes me as misguided.

It equates two statements --- "Environmental factors may have something to do with autism, either on their own or in concert with genetic predispositions" and "Mercury in vaccines causes autism" --- treating them as equally viable avenues of inquiry, and implying (by treating the latter as merely an instance of the former, broader category) that refusal to entertain the vaccine hypothesis means that one's mind is closed to all environmental hypotheses of autism. That's just not true.

I don't totally hate her analysis of the "Mercury Moms" movement --- I think she's right that they illustrate the lopsided nature of the partnership between the medical establishment and popular health movements, and also that they represent the loudest dissenting voice to the autism-is-genetic conventional wisdom, and that they are often caricatured in sexist tropes, as hysterical, ignorant women. But I think that if she wants to make the point that the autism-research establishment is ignoring potentially fruitful research into environmental factors, she should not use this group to illustrate it; the alternative explanation of autism that they espouse has been investigated, over and over again, and come up empty. Not wanting to pursue a dead end isn't the same as ideological narrow-mindedness, and many of the researchers who dismiss the Mercury Moms with such contempt are also looking into other environmental factors for a possible link with autism.

I can see why this group appeals to her, since, along with loudly repudiating the genetic understanding of autism, and claiming that a ubiquitous, expert-approved medical practice is actually causing the spread of autism, they are laypeople and mothers rather than doctors or academic researchers. They hit all the right notes as far as opposing the "genetic citizenship" model is concerned; I just don't think you can put aside such things like the ever-increasing weight of evidence against their claims, their indifference to this evidence, and the public-health consequences of their anti-vaccination agenda, to say how much of a role the geneticization narrative also plays in pushing them to the margins. I'm certainly willing to believe it's a factor, but I think the biggest factors are the other ones I mentioned.

Bumiller admits as much in the last sentence of the paragraph I quoted: "In part, the marginalization of the Mercury Moms comes from their own tendency toward absolutism ..."

The other thing that annoyed me somewhat was the positioning of two factions that differ on the matter of what causes autism and what kinds of things are likely to be useful in treating, curing or preventing autism, but that agree in their understanding of autism as a disease that ought to be eradicated, as the two opposite poles of this debate on what autism is and what society ought to do about it. There's a third facet as well, one that I know Bumiller knows about, because she wrote an earlier article about it, and mentions it in passing in this one; it's the neurodiversity movement, which she glosses over as another proponent of the idea that autism is genetically determined.

Many of us do think autism has a genetic component, and some of us think it's entirely genetic and has been around for a very long time, but for the most part we don't give a lot of weight to the matter of what causes autism. It's not critical to our objective, which is acceptance and integration into mainstream society.

And there are premises of the "genetic-citizenship" model that we question, or outright reject, just as the Mercury Moms reject the idea that doctors always know best. Many of us reject the ethic of individual self-care that the genetic-citizenship model revolves around, and we certainly reject the idea that it is every citizen's duty to prevent disabled people from being born. We also have a very fractious relationship with the major autism-advocacy organizations, as a search on the term "Autism Speaks" on most autistic people's blogs will tell you.

It seems to me that this article would've been much the richer had it included more of this stuff, maybe comparing and contrasting the ways in which the Mercury Moms and the neurodiversity and disability-rights movements uphold or challenge (because both groups do some of both, I think) the doctrine of genetic citizenship.

Bumiller, K. (2009). The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy Signs: Journal of Women in Culture and Society, 34 (4), 875-899 DOI: 10.1086/597130

*Clearly there are plenty of researchers who think genetics is the major factor contributing to autism, and some who do think of autism solely in genetic terms, but the idea that environmental factors also play a role is hardly out of the mainstream. In fact, there are currently several large studies under way of possible environmental correlates of autism, in part because the environmental issue hasn't been as well-explored as the genetic one, and researchers know that and are looking to change it. That hardly seems to me like the idea of autism having environmental triggers is being suppressed by the scientific and medical communities ...

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