Wednesday, July 31, 2013

More on McCarthy - from a parent of a child with autism.

The Toronto Star has a good essay that, like my own writing, explores the issue of what happens to a parent when they receive the diagnosis.

When my son Max, now 5, was diagnosed with the complex brain disorder just after his third birthday, it was like a sucker punch to the gut.
In one bracing instant, the dreams I’d nursed since his conception went up in smoke, landing my wife and I somewhere in The Twilight Zone .
Forget about little league, rock superstardom and flinging pithy bon mots at the dinner table (note: this last one was never going to happen anyway).
What became immediately clear was that, at least in the short term, the majority of our time would be spent chauffeuring our son to specialists and therapy groups, advocating on his behalf to school officials and attending parental support groups to figure out which end is up.
Overwhelming? That’s not the half of it.
Had someone approached me at that precise moment and offered a magic pill to take away Max’s autism-related issues — the volcanic meltdowns, the testy inflexibility — would I have considered it?
My wife and I have this discussion, however hypothetical, all the time.
She says no, because Max — a sweet kid with a probing, curious intelligence — is the sum of his quirks, and to alter his fundamental DNA would change the essence of who he is.
There’s nothing “wrong” with him: his brain is just wired differently.
I agree, but I would still go for the pill, because as far as I’m concerned, Max is Max, autistic or not, and anything that’s going to make his life less challenging and easier to navigate is fine with me.
The one thing we do agree on — and this supersedes any New Age flakiness on my part — is that McCarthy is a quack, the Honey Boo Boo of autism awareness, a vainglorious hustler with no medical background who relies on what she refers to as her “mommy instinct,” even when it flies in the face of scientific facts.
It’s Snooki pontificating on the origins of the universe, Kim Kardashian lecturing NASA about nuclear fission.
“The University of Google is where I got my degree,” the former Playboy pin-up boasted to Oprah Winfrey, flaunting her ignorance as a sign of authenticity.
So three points:

1. The diagnosis is hard. I write about it as a death experience, where the imaginary child one lives with, the child who you imagine grown, dies. It's harsh language, but I think accurate.

2. "Cure" and "Identity" are complex. I have a lot more to say about this vis-a-vis the new Down syndrome research.

3. The anti-intellectual = authenticity thing really irritates me. But if you, in fact, spend a lot of time talking to anti-vaxxers (which I have lately), they immediately revert to M.D. and SCIENCE. I have an email in my "junk-mail" folder right now titled 72 Studies showing a link between vaccines and autism. I just don't have the time or energy to go through and deconstruct how the very modest correlative findings are, in fact, not relevant. But the point here is that the anti-vax crowd, like most humans, seek bias confirmation, and are delighted to use science/medicine when it supports them, then demean it when not.