A blog possessed: How vaccine blogging has taken over

Blogging is odd and fascinating. Sometimes it leads you in directions you never anticipated or intended--and, when it does, it can do so with astonishing speed, sometimes taking you by total surprise. One day, you're blogging about one set of topics, and then a day later you suddenly find your blog dominated by a topic that you neither intended nor foresaw. For example, about one week ago, a reader sent me a link to a post on the Huffington Post that was pushing the usual anti-vaccination rhetoric I hear from activists. That e-mail led me to investigate further and find at least five posts with anti-vaccination rhetoric in the short history of the Huffington Post. Because the Ninth Skeptics' Circle was coming up and I wanted to provide my blog buddy St. Nate (the founder of the Skeptics' Circle) with some good material, I decided to write a rather lengthy post rebutting most of the fallacies in those five articles. I barely finished it in time to submit to the Circle, but finish it I did. I posted it last Wednesday and submitted it to the Skeptics' Circle just under the wire for the deadline.

And, suddenly, I'm an autism blogger.

Since then, I've ended up on an e-mail list from Neurodiversity.com, because of a link I posted to an online petition of theirs. (I don't mind; that's partially what this post is going to be about.) I've also ended up writing more about this issue, being cited by Skeptico and having my posts referenced and posted in the comments section of another anti-vaccination piece on the Huffington Post (something I should have done, but I hadn't realized that this particular article allowed comments, unlike previous ones).

We'll see what happens, but I never intended for this subject to take over Respectful Insolence the way it did. I just thought it would be an interesting piece to submit to the Skeptics' Circle on a subject I knew a bit about. I don't plan on making it a major theme of this blog, when someone like Autism Diva can do it better, but I can't resist one last entry into the fray.

One thing that came up during all this was the question: What's wrong with anti-vaccination activists pushing a link between thimerosal and autism? After all, thimerosal has been removed from all early childhood vaccines other than the flu vaccine (which is not a standard vaccine that is given to all children). If the anti-vaxers were right, we'll soon see the epidemiological link over the next few years, right? Ditto if they're wrong. And it is true, as I pointed out. Indeed, Dr. Gordon and I agree on this; we just don't agree on what the following 5-10 years are likely to show with regard to the epidemiology of such a link. In the meantime, is it such a bad thing to get the mercury out of vaccines?

There's nothing wrong per se (although it probably increased the cost of vaccination for in essence no benefit and left a nice fat juicy opening for the trial lawyers to imply that the fact that the government and vaccine manufacturers have succumbed to activist pressure to remove thimerosal from vaccines proves a link), but there's a price for this removal of thimerosal that anti-vaxers don't like to acknowledge. First, postulating the link when the evidence supporting it was very weak to nonexistent frightened parents, making them unjustifiably suspicious of vaccination and therefore less likely to have their children vaccinated (or, at the very least more resistant to it). Second, suggesting such a link on very weak evidence inflamed the guilt of existing parents, who were told in effect that it was at least partially their fault for their children's autism because they vaccinated their children as advised. Third, the postulating of a probably nonexistent link between mercury and autism opened the doors to the chelation therapy quacks, who use the ineffective treatment of chelation therapy to "remove the mercury" and supposedly "cure" the child of autism, a therapy that is unfortunately spoken of approvingly by some elements of the mainstream media, such as Paul Harvey last Thursday (and that formed the basis of many of the abstracts at the Autism One quackfest in Chicago this weekend). Even if mercury is found to be a major contributor to autism as the epidemiologic evidence comes in over the next five to ten years, it is already known that chelation therapy does not improve autism.

However, there is one more consequence, as pointed out in this open letter to David Kirby, the author of the recent book favorably reporting on those postulating a link between mercury and autism, Evidence of Harm. I got this open letter from the Neurodiversity.com mailing list, and its contents shocked me. The letter tells of a coarsening of the debate through anti-vaccination zealotry, as demonstrated by the advertising campaign for Mr. Kirby's book and the dialog on the message boards on Mr. Kirby's website. An excerpt from the open letter:

I have read many online newsgroup posts (including posts to the EOH list) written by parents of autistic children who do not describe witnessing any specific reaction at the time that shots were administered to their children, but who have become convinced of the vaccine hypothesis due to the publicity efforts of vaccine litigants. These parents are now consumed with guilt that their good-faith decision to vaccinate their children might have had damaging consequences, and rage at those individuals whom they presume misled them and inflicted damage upon their children, whether that guilt and rage are warranted or not.

It is also a legal strategy undertaken with little regard for the potential long-term, stigma-perpetuating impact upon those autistic people and their family members who are not inclined to believe that all autistics are poisoned. I have observed numerous instances in which vocal proponents of the autism=poisoning hypothesis have displayed outright contempt for anyone who might have come to their own conclusions about their and their family members' lives, and I will cite many of these instances in this letter.

For example, here is a comment by Lujene Clark, responding to Kevin Leitch, a British father of an autistic child; she and other EOH list members descended en masse upon Mr. Leitch after a blog entry he had written was mentioned on the list (http://www.kevinleitch.co.uk/wp/?p=146, EOH message 1014):

"...if you remain in denial you don't have to extend yourself or take responsibility to heal your child because it is so much easier to blame 'bad genes' and accept your child's fate. Or worse, try to get your child to accept his "genetic" fate. That is a COP-OUT. Your child deserves better. Get off your lazy bum and start to heal the biomedical problems of your child!!"

When Mr. Leitch stated that he recognized autistic traits in members of his extended family, Mrs. Clark replied,

"it seems apparent from reading your reply there is a history of serious psychiatric illness in your family. My apologies, I would not have attempted to engage in rational discussion had I known you were affected."

Now, this is quite a toxic attitude to have towards disability, towards evidence of the genetic transmission of devalued characteristics, and towards parents who think for themselves.

Indeed it is, and sadly there are several other examples in the letter of nastiness engendered by Mr. Kirby's book and other sources loudly touting a mercury-autism link. It is likely that Mr. Kirby does not support such viciousness, but we don't know for sure because he does not appear to have condemned it. He may not even know of it. Hopefully, this open letter will inform him of what is going on based on his book and provide an impetus for him to condemn such attacks. In any case, this toxic rhetoric towards parents who have the burden of caring for an autistic child reminds me of some of the rhetoric that another bunch of zealots, animal rights activists, sometimes heap upon people who have benefited from animal research. Such a stigmatizing attitude would be bad enough to subject the parents of autistic children to even if the science justified a link between thimerosal and autism. It is utterly inexcusable when the science does not support such a link. Most anti-vaccination activists don't behave this way, but the hysteria engendered by them emboldens the minority who do. When one is utterly certain that one has The Answer, it then starts to make a sort of sense to conclude that parents who do not subscribe to that "answer" and therefore do not treat their children accordingly are either deluded, careless, or even bad parents doing harm to their children and that they therefore deserve contempt. Parents with autistic children have enough problems; they don't need this one added on top of the difficulties they have to deal with every day raising their children.