22 February 2001
Naptime. A quiet house. Sunny. Cat’s snoozing in Damian’s little red armchair. Damian’s sprawled across his bed. I sit in the living room, my ear glued to the phone. Making call after call after call. From the benefits extension to medical review to: no, for evaluations you have to call this other number altogether, "they handle all our psychiatric cases." Psychiatric? But this is a neurological issue. Whatever, make the call.
I make the call. "A case worker will get back to you tomorrow."
Scene Two:
A Friday morning (no school today). I sit on the couch playing "if you’re happy and you know it, clap your hands" with Damian. The phone rings. It’s the case worker. George. Nice guy. Sympathetic. He asks about Damian, I say we suspect autism and need to have him evaluated.
George says, "Here’s the deal. Your coverage sucks for psych evaluations, they only pay half. So what I do is send you to UCLA. They’ll evaluate and do therapy at the same time. It takes three or four months. Because it’s affiliated with a hospital, I can bill it as in-patient and get it covered 100%."
"My god, you have no idea how relieved I am to hear that. We’ve been so stressed about what this is going to do to our finances..."
All he hears is "we’ve been so stressed." He answers: "I can only imagine what you’re going through. It must be like when someone dies, only you still have to keep taking care of them."
Say what? I look at Damian, now contentedly playing with his trains on the floor. My beautiful boy with his big gray-brown-hazel eyes and the smile that lights up his whole face and the quiet but obvious intelligence and thoughtfulness. According to this guy, he’s lost to me forever.
I get off the phone and hold out my arms for a hug. Damian burrows into my chest. I hold him close and breathe in his scent, his warmth.
Scene Three:
A few days later, Laura the speech therapist has confirmed our impression with her own: it’s likely that we’re seeing high functioning autism. The words echo in my brain like a shout into a deep, dark canyon, reverberating again and again. I leak tears.
Dan gets home, I head out, off to a local deli for the first-ever meeting of a brand new writer’s support and critique group. I’m looking forward to seeing my friends there, looking forward to meeting their friends. But somehow when I walk in the door and see a friend waving me over from across the big room, I feel paralyzed. I can’t go through with it. How can I talk about writing? How can I think about anything but this?
So I do what I always do in a time of crisis: I talk. I tell everyone what’s going on. One friend says "Damian? Autistic? That doesn’t seem possible. I mean, I haven’t met him that many times, but... he’s so... cute."
Yeah. He is. That doesn’t mean he’s without issues.
A woman I’ve never met until tonight tells me to "Get a second opinion. I have a friend whose kid was misdiagnosed. They’re throwing the word around like candy at Halloween these days. It’s the hip diagnosis. Get a second opinion."
My censor has apparently taken the night off. I tell her the truth. We’ve had a second opinion. And a third. And our own. We’ve done the reading. We’ve looked at the issues. We know our child. I say, "If it looks like a duck and walks like a duck, you have to treat the ducklike aspects." Doesn’t matter if it’s not autism, he’s got communication issues and social issues. The treatment’s the only important thing here.
Scene Four:
I bring Damian in to see Laura and play with her toys. She tells me she spoke to the first speech pathologist we saw. The one who evaluated Damian. The one who told Dan in response to a direct question that "no, he’s not on the autistic spectrum, it’s just a speech impediment." That one. The one who, it turns out, told Laura that she concurred with her analysis. IE: high functioning autism, at least somewhere on the spectrum.
She lied to Dan. Bold and bald. She lied.
George the Idiot Case Worker thinks Damian’s as good as dead. My new writer acquaintance wants to push for me to find a different label, because, after all, it just couldn’t be right. The speech pathologist didn’t want to tell Dan the truth. God forbid she use the "a" word and send him fleeing into the night.
It’s a word. The definition changes depending on who says it. To George -- well, we know what it means to him. To everyone else, it sounds like a curse. To me, now that I know a bit more than I did a month ago, it’s simply an as yet unknown set of neurological difficulties currently blocking my child from full engagement in the world.
That’s all. Yes, that’s plenty. But hardly a life sentence. Just a challenge. For all three of us. We’re already rising to that challenge, and it’s changing us in fascinating ways. But there’s still everyone else. And I don’t know what to do about them. The books don’t say what to do about the clueless and the misinformed. We have to wing that part.
current log / Damian essay archive / other essays archive / what's all this, then?
copyright 2001 Tamar