Sunday, May 30, 2010

"Autism Science Blogging"

In the comments section of this final post at Here Be Dragons, Riel and Yarrow^Amorpha articulated some things that had always bothered them about the Autism Hub:

There's a lot on the Hub that doesn't seem to have much to do with ethics or reality. We occasionally got the impression that it was really by and for this clique of people who all had this thing they called "autism science blogging." Which seemed to have little to do with what we understood science to be or with autistic people's lives, and to be mostly about making repetitive snarky debunking posts every time anyone anywhere says anything about autism being caused by vaccines and/or mercury poisoning, no matter how many times they have previously established that it is not. Often with ignorant to downright appalling attitudes about disability in general mixed in, and oh-so-fun ableist language. I think you [Kowalski] blogged about that previously, actually.

(Here are several of Kowalski's previous posts dealing with unexamined biases and unchecked privilege in the skeptical, atheist, autism, liberal- and radical-feminist blogospheres).

I don't have a problem with autism- and/or science-related blogs (or blogs devoted to other topics that sometimes dabble in science) writing a lot of anti-vaccine-debunking posts; debunking posts help make a whole field somewhat accessible to laypeople, by sketching the outlines of whole complicated bodies of evidence that it would be really hard or time-consuming to discover on one's own, and sometimes debunking each permutation of the vaccines-cause-autism meme requires you to talk about very different things.

It it's the thimerosal-in-vaccines-causes-autism incarnation, you can get into the pathophysiology of mercury poisoning and how it differs from what's generally been observed about the brains of autistic people, and you can also get into all the different epidemiological studies comparing autism prevalence before and after thimerosal was phased out of a given country's vaccines. If it's the measles-DNA-in-MMR-causes-autism variant, though, you get into very different matters: how the immune system works, how measles virus infects a host and causes disease, what viral DNA can and can't do inside a human cell.

I love this kind of writing, and do a fair amount of it myself. (Indeed, this was one of the first things I wanted to do on the Internet! My first-ever plan for a website, which I had to abandon as being way too ambitious, was to create one big webpage indexing *all* of the autism-related research articles I knew of; this blog was to be separate, dealing only with autism in fiction. I later decided to just write about whatever research interested me on this blog, too, since my rudimentary computer skills do not allow me to build a website from scratch!)

I certainly understand what Riel and Yarrow^Amorpha are talking about when they mention the ignorant, intolerant attitudes toward autism, and toward disability in general, in much autism-related science blogging, though. Most writing I've seen debunking the vaccines-cause-autism conspiracy theory* includes at least one disclaimer about how the writer is totally not suggesting that autism is anything less than a terrible disease that ought to be eradicated, and the writer understands the desperation parents of autistic children feel, especially since autism is incurable. Our existence is a terrible tragedy that ought to have been averted; that's the common ground on which reasonable people are encouraged to meet in these discussions.

That's to say nothing of the casual ableism that permeates so many of these posts, and especially their comment threads. Armchair diagnosis of quacks and Internet cranks with various mental illnesses masquerades as critique, serving no purpose but registering the author's and commenters' disdain for whomever is being discussed while at the same time making readers who are actually diagnosed with whatever mental illness is being bandied about as a slur feel shut out of the discussion.

Anyway, I just wanted to reproduce, and endorse, those observations of Riel and Yarrow^Amorpha's while also defending debunking.

*Anymore, I suspect I'm doing that particular belief too much credit by calling it a "hypothesis"; hypotheses are for testing, and get modified or discarded when the evidence proves them wrong. The "hypothesis" that vaccines cause autism seems to be impervious to evidence.

1 comment:

Leah Jane said...

It's funny you should mention this, just last week I sent off an email to PZ Meyers, asking him to include a sentence or two about how autism is NOT a tragedy or an illness in need of curing, after I read a post on his blog, Pharyngula, regarding the new discovery about autism's genetics. I wish I'd read this at the time, you said it much better than I did in my email to him.
I also read something once about chelation in The Skeptical Enquirer, where they prefaced their entire article with a paragraph about how tragic autism was. So I sent them a stern letter saying that people with autism make up a part of their readership, and it would be wise in the future to not insult us by implying our existence is a disease.
They never published it, oddly enough.