orgtheory.net

autism, vaccines, and social movements

The Times Online broke a story that caught my attention: there is evidence that the data behind the original vaccine/autism article was fabricated. The background: In 1998, the Lancet published an article reporting on 12 case studies where autism symptoms and bowel problems were said to follow MMR vaccinations. It was thereafter conjectured that MMR vaccines contained something that caused a violent reaction (as indicated by bowel problems) and led to developmental problems.

When I first heard of this idea, I thought it might be true. The history of medicine is filled with cases of things we do to ourselves that make us sick. Then, I heard that scientists had tried to verify the vaccine/autism link and were hard pressed to do so. This report from the National Institute of Child Health and Human Development summarizes a number of studies where epidemiologists simply couldn’t find a vaccine/autism link. Examples: autism rates were increasing before the introduction of the MMR shot and there was no jump when it was introduced; natural experiments showed no link – autism rates and timing of symptoms were similar in groups with different vaccination schedules; children diagnosed on the autism spectrum often had symptoms before the MMR shot; etc. Basically, anytime someone tried to look for more systematic evidence for a link, it was very hard to find.

I thought “case closed – we had an interesting hypothesis and then tested it.” But, as all parents of young kids know, there is enormous controversy over autism and vaccines, even when the aforementioned studies showed it was a tenuous link. I find this to be interesting. I definitely think that we should reconsider any medical treatment that might have such a serious side effect. On the other hand, I am also willing to discard a hypothesis when sympathetic researchers just don’t find much evidence for it. Except for the people who originated the theory, why should anyone have a vested interest in the hypothesis? Especially when non-vaccination can lead to life threatening illnesses?

One way to approach it is as a social movement problem. The autism/vaccine hypothesis generated a community of people who really cared about the issue and struggled against a skeptical establishment. This can lead to important change. However, it can also have counter productive effects. The social movement community can have inertia when the cause itself may come into question. I’d be very interested in how the a/v hypothesis community is dealing with the revelation that a founding text, the 1998 Lancet article, has now come into serious question.

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Written by fabiorojas

February 10, 2009 at 5:23 am

12 Responses

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  1. The certainty of the members of the resulting anti-vaccine movement reminds me of the “world is ending” cult Festinger and colleagues studied when developing the theory of cognitive dissonance. Those who waited for the end of the world together were more convinced of the truth of their beliefs when the end didn’t come to pass. Those who waited alone simply gave up the belief.

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    brubineau

    February 10, 2009 at 1:58 pm

  2. brubineau,

    in an endnote to /Rise of Christianity/ Stark says that Festinger’s results have failed to replicate and he blames it on the reflexivity problem of the UFO cult being saturated by social psychologists.

    fabio,

    i think it’s useful to distinguish between the core and periphery. i foresee reasonably large effects at the margins in that this new evidence should slow recruitment into the blame vaccines social movement. so i think parents of infants who are considering vaccinations and have only heard vague rumors will be less reluctant to get the shots. on the other hand, the hardcore is less likely to be dissuaded. most of these people are parents of elementary-age or older autistics in close contact with other parents of autistics who they meet at support groups and special ed. not only do they have a reinforcing peer group, but the “vaccines” concept provides a much more intelligible answer than mainstream science, which is very vague and includes a lot of concepts that are a perfect storm of opacity, being path-dependent, fuzzy, and abstract. furthermore the blame vaccines concept is tied to a positive agenda of new age treatments that are alleged to help. it’s much more satisfying to say “i know what caused this and i know what to do” than to say “it’s very difficult to understand and there’s nothing we can do.” finally, they have an elaborate conspiracy theory about the hegemonic distortions of the allegedly powerful and profitable vaccine industry. (which is ridiculous because vaccines have really low margins). anyway, i’m gonna go out on a limb and say that in the short-run few if any of the blame-thimerasol crackpots are going to be convinced.
    there’s actually a lot of parallels to Marxism here: a theory of hegemony and false consciousness (vaccine industry propaganda rather than “superstructure”), the establishment’s dialectical creation of the opposition through spatially concentration (special ed rather than factories), and truly horrific effects if the movement’s agenda were ever put into power (resurgent measles rather than gulags).

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    Gabriel Rossman

    February 10, 2009 at 2:56 pm

  3. I don’t think this sort of thing is at all uncommon. The beliefs of movements both on the right and left tend to resist scientific evidence when it runs contrary to whatever working theory motivates their beliefs.

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    brayden

    February 10, 2009 at 3:21 pm

  4. I expect there will be little to no actual consequences from this revelation. The anti-vaxxers have multiple, overlapping, sometimes contradictory, accounts for how vaccines allegedly cause autism. They include the Wakefield gut measles argument, alleged mercury poisoning via the preservative thiomersal, alleged mutagenic consequences of vaccines received by parents, alleged vitamin deficiencies as a consequence of mercury from thiomersal, compromised immune systems as a result of non-human DNA and RNA in the vaccines themselves… the list goes on and on. Even if they were inclined to trust the authority figures in medicine and science (they’re not) there are so many other mechanisms bandied about that this one revelation will have next to no impact. See this if you have some free time for a number of examples.

    Frankly, I think it’s more productive to view anti-vaxxers as more akin to a new religious movement than a social movement as usually conceived though, obviously, there are connections between them. And while I find Festinger’s work interesting, I don’t think this is a good example of a dissonance-inducing event. There are just too many additional “mechanisms” for this one finding to produce that degree of emotional distress.

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    drektheuninteresting

    February 10, 2009 at 3:52 pm

  5. Another point of comparison would be Ron Westrum’s work on battered child syndrome. (Interestingly, though, Westrum also studied UFOs.) He describes the movement that established BCS as a social problem starting from a single paper that described six cases published in 1946. Here larger studies confirmed the early conjecture.

    http://scx.sagepub.com/cgi/reprint/3/3/381

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    Thomas Basbøll

    February 10, 2009 at 4:06 pm

  6. I found out yesterday that there is mercury in High Fructose Corn Syrup. Could this be what is causing an increase in the autism rates? There was a government study done by the IATP that was released on January 26, 2009 showing the mercury – HFCS link. If it really is the mercury that is causing autism then this should be seriously looked into.

    http://blog.calorie-help.com/2009/02/09/high-fructose-corn-syrup-andautism/

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    Rick

    February 10, 2009 at 4:37 pm

  7. Although it has no sociological flavor, Ben Goldacre’s analysis of the MMR/autism issue is quite insightful. He has several columns dedicated to this issue in his blog http://www.badscience.net (which mirrors his weekly column in the Guardian).
    Basically, he accuses the media for misrepresenting Wakefield’s original study and subsequent studies – which created this “social movement” (or whatever it is) of anti vaxxers, at list in the UK.

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    amit

    February 10, 2009 at 5:05 pm

  8. […] Fabio also posted about this at orgtheory. […]

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  9. People are not looking at the Chicken and egg equation. Parents tell me daily about the timing issue of vaccination and Autism. Parents were seeking answers before the Wakefield study. His study was authored by a number of people and was peer reviewed and published. Only when the heat was turned up did many run and hide. Why has the good Doctor never ever recanted? It would be easy to say Yes you are all correct. Every step of the way the Doctor defends his position. It looks like a witch hunt to me. All I know is My son spoke. Got vaccinations. Then lost many functions. The timing is very curious. Does somebody know how the court will rule this week? Are they trying to make sure there is a dust storm so it gets lost?

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    Tanners Dad

    February 12, 2009 at 4:37 am

  10. Looks like they just ruled that thimerosal is not the cause of autism. I’m sure alot of people are going to be upset over this.

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    Rick

    February 12, 2009 at 4:48 pm

  11. i’m on a lot of listserves and newsletter lists of parents of kids with autism and asd diagnoses (my daughter has been diagnosed with mild or high-functioning asd, whatever the heck that means). i can report that the vaccine court decision and the Wakefield retraction have had no effect that i can discern on any of the parents or organizations that are wedded to this explanation.

    most people who think vaccines have something to do with autism are also big believers in bio-medical cures for it (ranging from gluten-free, casein-free diets to chelation to large does of B12 to sticking kids in hyperbaric chambers, etc). bio-medical interventions are a big industry and getting bigger — they are rarely supported by insurance, typically very expensive, sometimes dangerous, and a cottage industry of doctors (DAN! doctors, for Defeat Autism Now) has grown up to support them. this is where the money is and here is your vested interest…

    (i have met a number of dedicated and caring DAN people, but there appears to be little oversight over their practices).

    for a good example, see the statement from TACA (a big bio-medical cure booster and an organization that argues that kids can ‘recover’ from autism), for which Jenny McCarthy is spokesperson here:
    http://www.talkaboutcuringautism.org/medical/first-autism-omnibus-court-cases-decided.htm

    many autism orgs also post ‘studies’ on their websites (see TACA for examples on vaccines and bio-medical interventions). the studies are often unpublished and no reputable or well-trained scientist would find them convincing — the methods are appalling in almost all cases. the average parent of an autistic child cannot be expected to know this.

    i’d end by saying that i see little to no evidence in the research lit for any of these bio-medical interventions but i know many parents who believe in them. most of their kids are much worse off than mine and i understand the need to try anything — what i resent at this point is the thousands of dollars wasted on unproven interventions, some for-profit organizations who appear to be preying on parental fears, and the research dollars wasted in a never-ending effort to prove a negative.

    anyway, sorry for such a long comment but here’s what it looks like from a parent sociologist :)

    (and, hey fabio, remember my name? it’s a funny conversation at the beginning of every new doctor appointment)

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    newsocprof

    February 15, 2009 at 7:58 pm

  12. […] autism and vaccine – which isn’t even correlative but nevertheless generated a vocal social movement. (But with the vaccine ruled out, hey maybe there’s a link between autism and vinyl […]

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