Amy Wallace discusses the responses she got to the WIRED article
Posted Oct 28 2009 11:01pm
A recent article in WIRED magazine took a close look at the vaccine/autism discussion. I discussed it briefly in a previous post. The article took a very science-oriented stance which, you can imagine, did not please the vaccines-cause-autism organizations.
For example, the “vaccines-cause-autism” organizations are listed by WIRED as “anti-vaccine” organizations.
The WIRED piece has caused a stir, even outside of the autism communities. Ms. Wallace’s piece has been noticed by Time Magazine, MinnPost.com, and The Atlantic. Oh, and some of the “anti-vaccine” orgs blogged about it too.
Let’s take a closer look at the responses. She got about 250 so far, with about 3:1 in favor of the article. Some of the responses from her twitter feed: Some responses, like the one noted in Terra Sigillata, were quite harsh. Here are a couple:
I’ve been told I’ll think differently “if you live to grow up.” I’ve been warned that “this article will haunt you for a long time.”
“If she lives to grow up”? Pretty clear threat there.
She has every right to complain. Instead Ms. Wallace has reported on these comments, but for the most part she hasn’t added commentary. This hasn’t stopped her detractors from calling her a “cry baby”.
I’ve been called stupid, greedy, a whore, a prostitute, and a “fking lib.” I’ve been called the author of “heinous tripe.”
This is one view the outside world is getting of the autism communities. Does anyone think this is helping? OK, there are the small minority. So, to be more precise, does anyone reasonable disagree with the idea that this hurts the autism communities?
Here are some more comments she received that focus more on the autism communites:
In his book, Autism’s False Prophets, Dr. Offit writes about scientists who have been intimidated into staying silent about autism/vaccines. If scientists – who are armed with facts and trained to interpret them – are afraid, can it be any surprise that a lot of parents are, too?
No, it isn’t a surprise. Sad, yes. Surprise, no.
One persistent theme in their emails is the idea that vaccination policies abridge our civil rights. As one reader put it, “Me and mine are not a herd. Human beings are capable and entitled to decide for themselves what to put in our bodies.” Another mom wrote, “The PARENT knows their child more than anyone in the world. The PARENTS, Ms. Wallace, NOT Mr. Offit.” Another said, “I have a Son that needs Me – not another needle.”
To which Ms. Wallace responded rather well:
This idea – which we discuss in the Wired story – is powerful: that parents, not medical experts, should be the ultimate authority on their children’s health. To which I say, with all due respect, and as a parent myself: loving your child doesn’t make you an expert. It makes you a devoted parent.
Ms. Wallace goes on to state:
The dominant emotion in even the angriest emails to me is despair. Forget the vitriol, the slurs, the insults. The despair is what I find truly painful to read.
Which she follows with this comment from a parent:
“Those of us with autistic children are really sick of you know-it-alls,” one mom wrote me. Then she delivered the best description of what a loving parent wishes for their child that I have received so far. “I want my daughter to feel like a ‘typical’ child,” she wrote. “I want her to experience ONE day of no GI pain or headaches. I want my daughter to be able to gain weight and be able to have enough energy to play on the playground with her friends. So, in between therapies, doctors’ appointments, crying, diarrhea, no friends, trouble with school, countless vitamins to keep her tiny body going and being near bankrupt, you think I want to be in this fight?”
Ms. Wallace responds:
No, I don’t think she wants to be in that fight. Who would? Autism can be truly devastating to families. There is no debate about that. Which is why – as so many parents have said—every available research dollar should be aimed at finding the causes of the disorder
Leaving aside the discussion of whether autism is a medical condition for the moment (although I expect and welcome comments on this):
With all due respect, here Ms. Wallace made a common mistake in equating understanding causation with progress towards therapies. Ms. Wallace seems to have bought into the assumption that if we know the causes, we will automatically know treatments. Well, yes and no. Yes, understanding causation may help in many cases. At the same time, in many cases it likely will not.
Take, for example, the idea that autism is vaccine injury. The alternative medical community already assumes autism is a vaccine injury. They already claim to be treating autism as vaccine injury. Do they have a “cure”? No. Do they even have any proven therapies? No. For that matter, are any of their therapies really based on treating vaccine injury, as they claim? No. As a simple example: can anyone point to a truly innovative therapy that Andrew Wakefield (father of the MMR -causes-autism theory) has developed?
Consider HBOT (Hyperbaric Oxygen Therapy). Can anyone give a clear explanation how that ties into vaccine injury? The closest “therapy” based on vaccine injury proposed so far is chelation. The removal of mercury from a body supposedly mercury poisoned from vaccines. The latest study, from their own researchers mind you, shows it is as effective as a placebo. Which is a nice way of saying: chelation doesn’t work.
I am not saying that causation research is useless. Far from it. However, it is neither necessary nor sufficient to produce the medical therapies many parents are searching for to treat their children.
I’ve gone off track from reporting the responses Ms. Wallace received to her piece. I’ve probably also sidetracked the discussion that will happen here.
Today Ms. Wallace added some comments she has received from autistics.
n the past week or so, I’ve heard from several people who said they were on the autism spectrum. They all said they enjoyed the article. What they don’t enjoy, however, is hearing themselves described as people that no one wants to be.
I’ll end with one comment out of those tweets:
“I have Autism. But: I am a person, not a problem. I am an asset, not a subject. I’m not a lab mouse, I am human.