5 January 2005

Last month Damian's school held a holiday concert. All the kids (and I mean ALL the kids) got up onto the stage, class by class, and sang winter-themed songs. The kindergarteners were adorable in their scarves, caps and earmuffs, belting out "Jingle Bells" off key. One or two older classes attempted harmonies and almost succeeded. Though it went on far too long, I think it was a good experience for the students: for some, their first time on stage.

Halfway through the event, a dapper tuxedo-clad second grader clambered onto the stage. He was accompanied by his mother, who carried a cello. Apparently it was time for an instrumental interlude. Even though the student orchestra had performed for the school a day earlier. But maybe this petite cellist was a prodigy and this was a chance for him to shine as a soloist. That seems, not only okay, but kind of cool.

After he settled into his chair, his cello braced against his knee and his music on the flimsy stand, he introduced himself to the audience. "Hello, my name is Mark" (yes, a pseudonym) "and I'm autistic."


First of all, does this child know what those words mean? Whose choice is it to trumpet his disability so publicly to these classmates who don't really know what the words mean either and probably don't care? Whose decision is it to identify his role onstage, not as a child musician but as an autistic child musician? Not just that, but to make him be the one to say the word?

I understand an adult getting up on a stage and saying to the world, "I am autistic, this is part of who I am and I want you to understand what that means." Not the case here. His mother may have wanted this as a way of excusing any odd behavior on his part, but it plasters the label so large on his forehead, I can't help but wince.

If you read my journal at all, you know I don't shy away from the diagnosis. And when the time comes, I want Damian to understand his differences and his personal history. I want him to know that aspect of his identity and appreciate what it means for him as a person. I think - I hope - he will be proud of how far he's come and also aware of certain brain quirks. But I would never dream of stuffing that word into his mouth, making him tell an audience expecting music, to just say the single word and think it enough. I think that's wrong.

I can empathize with the vulnerability that may have led to this off-putting decision: will my son perform okay? Will he be odd and disruptive? Can he carry this off? The boy cellist didn't have as much self-awareness as Damian does, was not as conscious of what an audience might and what he should and should not say. And maybe in that sense, the adults in the audience made allowances for him because of his disability. But was it necessary? I don't think it was. Children don't always act appropriately, diagnosis or no. We'd have made allowances regardless of that bit of information. And I can't help but think there was something else at work here impelling the revelation, if only on a subconscious level.

Periodically I hear reports on NPR or read accounts in the paper, human interest stories about highly gifted young musicians, true and extraordinary prodigies. I remember one, a boy fronting a jazz band at the Newport Jazz Festival, a pubescent child performing on par with grizzled players. I paid close attention because he was identified as autistic. I wondered as I heard his voice coming from my car radio if Damian would ever sound that poised, that self-aware and assured. I appreciated knowing that the boy was autistic; the information allowed me to hear a normal-sounding child and imagine what it could mean for my own still-impaired boy. I'm glad that boy's parents went public with it, or that he did. But it's a complicated issue.

Damian has come a long way since then, and I think he may even become someone much like that boy. And with his drumming gift, he too may have that chance to be profiled as another talented autistic boy. Would we, though? Would we identify him that way in that setting? Would we single him out, make people examine his every intonation, searching for the autism in him? Would we, knowing they'd put him in that box labeled "Some autistics have unusual musical or mathematical talents, it's part of the diagnosis"?

It bothers me, this glib equation. Bothers me as much as the clinicians who all told me that Damian would learn to read extremely early because he was probably hyperlexic. He's not. He learned to read pretty much right on time, maybe a hair early. He has no particular math skills, either, beyond simply being a smart boy. Smart and mildly autistic does not equal spooky savant splinter skills, no matter how much people apparently long to see them. Sort of like looking at the oddball creature at the circus, look what the performing seal can do, isn't that cool?

Maybe Damian's sense of rhythm does in fact come from a quirk in his brain related to his deficits. It's possible they make certain things easier just as they make certain other things harder. Gifted kids often aren't good at gross motor skills (eg: the geek who can't throw a ball); the brain compensates in unknowable ways. But maybe his musical aptitude is completely unrelated to his autism. My cousin is a concert violinist, after all. Music runs in my family. Dan, too, is musically attuned. Damian's interest would be no more or less surprising without the diagnosis attached. And I can't help it: I find that making the link - autistic, therefore musical - diminishes the gift. Am I a writer because it goes hand in hand with some unknown neurological deficit? Is Dan a film editor because of some quirk in his brain? Why try to pass someone's talent off as if it's a bizarre parlor trick?

Yes, it bothers me. And maybe that's why I found that miniature musician so distressing last month. It felt as if someone in his life wanted to plug him, his diagnosis and his musical inclination, into that category and gain some imagined prestige in the process. Frankly, the kid wasn't that great. Not bad for a seven year old, don't get me wrong. But musical genius? Not so much. He obviously enjoyed the attention and I think the act of performing, but he wasn't imbued with Mozart's magical touch. He was a kid playing an instrument. That was all. Isn't it enough?

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