Thursday, November 20, 2008

DECADES OF COLLECTIVE MEDICAL TRAINING AND MY MEDICAL TEAM CAN'T TELL A JOKE -- WHAT DOES THAT TELL YOU, DENIS? I didn't mean to put my nameplate on the ALOTT5MA Autism Desk, but here it is, engraved on fake mahogany resting on a burnished nickel stand, and I guess it's Denis Leary who put it here.

That's the Denis Leary whose new book, if you haven't been watching the Daily Show or reading E! Online, says:
There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks…to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you—yer kid is NOT autistic. He's just stupid. Or lazy. Or both.
Leary says, apparently with some justification, that one can't just read that passage out of context:
I thought I made my feelings about autism very clear: that I not only support the current rational approaches to the diagnoses and treatment of real autism but have witnessed it firsthand while watching very dear old friends raise a functioning autistic child.... The point of the chapter is not that autism doesn't exist -- it obviously does -- and I have nothing but admiration and respect for parents dealing with the issue, including the ones I know. The bulk of the chapter deals with grown men who are either self-diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny.
Let me say that I believe Leary's explanation of his intent completely. He refers to specific paragraphs of his book, and he's done enough charity work to earn the benefit of the doubt. I do not for a second believe that he either said or was trying to say that autism isn't an actual, devastating disorder.

And guess what: it doesn't matter. What he actually said is idiotic.

First, Leary's premise is that there is a difference between "real autism" (his words), which exists, and something else, and that Leary himself can tell the difference. It's not clear whether Leary thinks the something else -- "low-level offshoots" of autism -- exists and is just wishfully misdiagnosed, or whether Leary just thinks that Aspergers and PDD don't exist because he thinks they don't exist. Either way, it's an uninformed opinion. I read an article by a guy who said of his son, "if you met him for ten minutes, you wouldn't notice anything. If you spent a half-hour with him, you'd think he was quirky. If you spent several hours with him, you would know that something was wrong." My guess is that Leary's broad-stroke generalization isn't based on the three-hour encounter, or even the 10-minute one. As between a parent's questionable "self-diagnosis" and Leary's completely uninformed one, I'll take the parent's, thanks.

That's not what bothers me the most about Leary's argument, though. It's the thought that "inattentive mothers" and "competitive fathers" are shopping for diagnoses for selfish reasons. If anybody out there is sympathetic to Leary's argument, let me ask you: whether you are inattentive, competitive, or neither, what would you do if your kid were having unusual, even if "low-level" difficulties? Late speech, inability to handle abstract concepts, failure to interact with other children, complete indifference to typical children's interests, poor motor control? Would you say, "dang, my kid is stupid and lazy," or would you go to an expert and say "is something wrong with my kid?" Even if you're paranoid and crazy and your kid is just fine, would that somehow make you a bad parent?

One thing it would not make you, notwithstanding Leary's argument, is lazy. Let me tell you what you can expect with a diagnosis of a "low-level offshoot" of autism. With a diagnosis of Asperger's or PDD, you get the hope that with therapy and hard work, your child will learn to pass, to seem "normal" (the ASD community prefers "neurotypical") enough to live the life that you lived or better. But you also get some other stuff. You can expect a lot of hard work and frequent disappointment. If you are lucky, you can expect countless hours -- weekends, afternoons, time off work -- with therapists, at a cost of tens of thousands of dollars a year for years and years. If you are very, very lucky, you will fight a constant battle with your insurance companies and government service providers, month after month, to get them to pay for it. If you are less lucky but still lucky, you will lose this fight and pay out of your own pocket. If you are unlucky, you will take what you can get from the state and can afford on your own but you will not have the resources to pay for interventions that are recommended to you and you will watch your kid fall further behind and know that you were unable to provide the help that other people could afford. And all of these parents, the lucky and the unlucky ones, get to worry every night about whether their kids will ever get to the point where they won't be called stupid and lazy out of ignorance or malice. What Leary doesn't understand, and what these parents do, is that a diagnosis isn't an end product; it's the beginning of a very long and possibly endless ordeal full of exhausting work, interminable frustration, and sickening heartbreak.

These parents -- the ones who go out and get these diagnoses, sometimes knowing what's in store for them -- are not indifferent, not lazy, and not motivated by competitiveness. If they were lazy, bad parents, they wouldn't get the diagnosis at all (though that's obviously not the only reason people don't get early diagnoses), because it's a shitload easier and cheaper to let a kid fail than to do whatever you can to help him succeed. Denis Leary, you are so, so wrong.

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