1/05/2010

AoA: Demand the IOM include Autism as an Adverse Vaccine Effect! Damn the Science, Man!

Used to,  in the mornings I'd drink my coffee and read the newspaper or watch the news. Now, I peruse the various blogs on my blogroll and those others I refuse to put on my blogroll lest they connote tacit support. I've been at it for a little while this morning, reading some interesting things. Finally, as my last stop to catch up with the various things of interest to me, I clicked on to Age of Autism, where they have not one, not two, not three, but four articles on the consensus report in Pediatrics that children with autism with gastrointestinal issues should be evaluated and treated. Well, of course they should. Too bad AoA goes too far with its conclusions:

 "A causal relationship between gastrointestinal disorders and the behavioral features of children with autism spectrum disorder has been acknowledged for years by parents caring for those affected, yet dismissed by mainstream medicine."

It wouldn't be AoA if it didn't go too far, though, would it? So you'll love the next article once you get through the four redundant ones: "Demand Now That IOM Includes Autism As Adverse Vaccine Event."
AoA wants you to "email IOM demanding that autism is included in the list of adverse vaccine events, otherwise, it is likely to be left out."

Of course, it's likely to be left out. The IOM doesn't proceed based on angry emails. It proceeds on evidence.

On the IOM's page "Review of Adverse Effects of Vaccines," it announces that the "committee will review the epidemiological, clinical, and biological evidence regarding adverse health events associated with specific vaccines covered by the Vaccine Injury Compensation Program. The vaccines to be reviewed are varicella zoster vaccine, influenza vaccines, hepatitis B vaccine, and human papillomavirus vaccine. Other vaccines could be added if additional funding is secured."

Note that it doesn't say, hey parents email in and demand that your anecdotally derived hypotheses on vaccines and autism be portrayed as scientific evidence. The IOM does provide the public the opportunity to email and offer information, but that doesn't mean you can email and demand that autism be included as an adverse event. Gads. Really? If science won't work for the vaccine neo-luddites, then intense pressure through bullying and intimidation and suing the pants off of folks who stand up to them will do the trick, they hope.

You also gotta shake your head at AoA; they don't specify anymore which vaccine causes autism. Any of them will do it, apparently. Or all of them. Dang it. It's something. Hey, what if it's the air? Air has traces of these pesky chemicals. And we all breathe it. We know that polluted air causes more asthma and respiratory problems, so why not autism? Yeah. Let's sue big business. The government. China. Come on. And the water, with its traces of all the medicines. And homeopathic medicines. We should really sue the homeopaths with their potent water that has memory because it's even more powerful than the tap water. It's really behind the autism. Yup, that's it.

Anyone can bullshit his way into believing preposterous things, especially if he gets a little liquored up beforehand, or even worse, spends his days reading a bunch of folks who believe wackaloon ideas. Look at Doherty. He went from disbelieving the vaccine side of things to now buying into it? Can Jonathan Mitchell help but be next to fall to that?

Having had the last month with a reduced work load, I've had time to go back to some of the autism-related bloggers and read their blogs from the start, since I only recently came to this online community. I've written before about the vagaries of human memory, and Thelma and Louise illustrated how memory and the idea of causation shifted in a couple with an autistic child as they become immersed in the online gfcf and then autism/vaccine linked community. If one were to peruse the open autism mercury or EOH groups, picking out individuals who have been involved for years, one would see a shifting of positions to more extreme ones as time passed. It's a shame.

I recently went back to a major AoAer's blog and started at the beginning, nearly four years back, and what  I read, as I moved forward in time, surprised me. Here again, you can see the evolution of beliefs that move to the more extreme position the person now holds. It saddened me. If I had met the person back then, started reading back then, we'd have been friendly. There were many commonalities and enough differences that it would have been a dynamic thing. The blogger's love for her children shines through the posts. The difficulties of raising children on the spectrum were told with a biting humor that let you know she was a trooper. It was rough, but doable because the love, the determination to help her children, were centermost. Slowly, though, the vaccine connection became interwoven. The bitterness crept in, and of course the other places the blogger wrote showcased that bitterness, that anti-vaccine belief more.

And yet and still, the humanity, the empathy, the concern for those in need, those struggling, that was displayed on her blog time and time again. I connected on many levels with this blogger as I read her forward in time. And I thought, with what I know of group polarization, of the tremendous harm that places like Age of Autism and autism/mercury, EOH, and the like do, not just to the readers, but to those who run places like that. Group polarization is a bitch and a half. Censorship is doubly crippling. By only allowing voices that agree in a group, polarization occurs and people who came into the group grow increasingly more extreme in their positions. This either continues indefinitely or until disillusionment occurs and the individual breaks away from the group.

The people who follow (and lead) in the rhetoric put out by places like AoA must, I think, be viewed through the prism that this is not where they started, not the belief system they held. They came into these types of groups questing for answers and deeply in pain over their life circumstances. AoA gave them a place to hold onto the twin flames of hope and rage, with the lures of a reason for autism and the promise of cure. As cures don't materialize, the rage grows and the hope dims. It isn't easy to admit you might have gone down the wrong path. It's not easy to change course. It's probably even harder that there's a large community out there who has been watching and pointing out that the path was a dead end and a false one.

The anti-vaccine movement will get more vociferous, more militantly hostile, even as it shrinks in size, as those who realize rage is no answer and false promises but bitter ashes and so peel off the movement to reevaluate, regroup and rejoin the wider community. We have to find a way to be beacons, to remember their underlying humanity, their pain, so that we give them a way back into the wider community.
 

1 comment:

quay said...

Damn good entry!

Definitely the group dynamic "sucks you in" regardless of the group. I'm much more of a die hard Skeptic now that I have started blogging a bit myself and especially in reading so many of the blogs. In this case I obviously think it's a good thing... but I suspect the AoA fans do as well in their case (which in this case is simply heart-breaking).

Cheers,
Josh