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| Image credit: Photo by timabbott on Flickr Licensed under Creative Commons |
A recent NY Times opinion piece on toxins and autism has been making the rounds lately, and well, frankly, the piece bugs the crap out of me, and I can't quite figure out why. After all, it seems like, not just an excellent idea, but a complete no-brainer to want to ensure that that the products we use -- that go into our air and water and foods and bodies -- are safe and non-toxic. And it seems reasonable to be concerned, given the thousands of untested chemicals in use every day, about possible links to our health: from the way they affect our organs and tissues to the way they affect our neurological processes. And it seems reasonable to me to want to investigate what autism is and what causes it. And yet...
Maybe it's the fact that the first few paragraphs contain the words "frighteningly common" and "financial and human cost" and "burden." Words matter. And those words, rather than including my son Austen and others like him in the human family, set him apart, as a burden and a cost that the rest of us have to shoulder.
Maybe it's the focus on autism in particular. If the concern is truly about the effect of toxins on our health, why call out autism rather than talking about either cancers or neurological issues generally (both of which were mentioned almost in passing)? Instead, autism is set apart. Autism is chosen to be the poster child for neurological issues; autism is the frightening specter from which we all must run; autism is the enemy; autism is the pawn in this political game.
Maybe it's that several paragraphs are spent on what pregnant women ought to be doing and only one sentence is spent on the mention that often, at least in the one quarter of autism cases that are genetic, there is nothing a pregnant woman could be doing differently at all. Maybe it's because I can already hear the same voices -- the ones who told me that the "costs" and "burden" of Austen being autistic were my own doing, because I vaccinated him, because I let him watch TV, because I had him when I was over the age of 30 -- now telling moms this is their fault for using the wrong shampoo or for painting their nails, when that may not be the case at all. The factors are so complex and difficult to tease out that we simply do not know right now, and may never know.
Maybe it's that all of those things leave me feeling that autism is set apart, that my son and my family are set apart, that we are (and have brought on others) a burden and a problem to be eliminated, rather than being an integral part of a situation we all need to work through together.
I have a Facebook "friend" who keeps posting links to anti-vax and autism scare blogs and stories, she's a mum from the school and I don't know her well so I haven't yet given in to the urge to respond with a barrage of links to Orac's blog at Scienceblogs, Phil Plait's Bad Astronomy or some of the blogs by autistic people that I've come across because I rather suspect it wouldn't do any good. But I want to.
MPJ, I totally understand what you are saying. My son, now almost 21 years old, was diagnosed ADHD at age three. By age ten, he was assessed by the school district as NVLD. The labels he has been given did nothing to enlighten teachers, principals or other parents about his challenges OR gifts. To help them see what great things he has brought to the world.
My son has splinter skills. Teachers never knew what to make of that. Because he was (and is) verbally articulate, they assumed he was just being lazy during science and math. Because he knew so much about history and geography, they thought he wasn't trying hard enough to write an essay about it.
I remember thinking that it wasn't my child who needed special ed. It felt more like the world did. It has been a roller coaster life.
I'm also annoyed at the continued use of 'epidemic' ,'burden', and the sheer silliness of a call to action on 'toxins' as regards to autism. Not that our environment's effects on us shouldn't be studied, but now that we've pretty much gotten the anti-vax garbage out of the way, why not put some of that time, money, and energy into creating supports for autistic people (jobs, living spaces, school supports etc), and most of all, acceptance, instead of getting all hysterical about some 'new' issue. I'd considerably rather know that my autistic kids are accepted as people, given the opportunities for meaningful employment, and not be shuttled off to an institution after I'm dead.
While I'm the last person to debate that there are many things in our environment that are actively harmful to us, and studying (and regulating) them should be a priority, if you're going to talk about autism, talk about things that will actually benefit autistic people. I'm usually a big fan of Kristof, but I think that he really missed the boat on this one.