22 February 2001
Naptime. A quiet house. Sunny. Cats snoozing in Damians little red armchair. Damians 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."
A Friday morning (no school today). I sit on the couch playing "if youre happy and you know it, clap your hands" with Damian. The phone rings. Its the case worker. George. Nice guy. Sympathetic. He asks about Damian, I say we suspect autism and need to have him evaluated.
George says, "Heres the deal. Your coverage sucks for psych evaluations, they only pay half. So what I do is send you to UCLA. Theyll evaluate and do therapy at the same time. It takes three or four months. Because its 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. Weve been so stressed about what this is going to do to our finances..."
All he hears is "weve been so stressed." He answers: "I can only imagine what youre 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, hes 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.
A few days later, Laura the speech therapist has confirmed our impression with her own: its likely that were 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 writers support and critique group. Im 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 cant 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 whats going on. One friend says "Damian? Autistic? That doesnt seem possible. I mean, I havent met him that many times, but... hes so... cute."
Yeah. He is. That doesnt mean hes without issues.
A woman Ive never met until tonight tells me to "Get a second opinion. I have a friend whose kid was misdiagnosed. Theyre throwing the word around like candy at Halloween these days. Its the hip diagnosis. Get a second opinion."
My censor has apparently taken the night off. I tell her the truth. Weve had a second opinion. And a third. And our own. Weve done the reading. Weve 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." Doesnt matter if its not autism, hes got communication issues and social issues. The treatments the only important thing here.
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, hes not on the autistic spectrum, its 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 Damians as good as dead. My new writer acquaintance wants to push for me to find a different label, because, after all, it just couldnt be right. The speech pathologist didnt want to tell Dan the truth. God forbid she use the "a" word and send him fleeing into the night.
Its 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, its simply an as yet unknown set of neurological difficulties currently blocking my child from full engagement in the world.
Thats all. Yes, thats plenty. But hardly a life sentence. Just a challenge. For all three of us. Were already rising to that challenge, and its changing us in fascinating ways. But theres still everyone else. And I dont know what to do about them. The books dont say what to do about the clueless and the misinformed. We have to wing that part.
copyright 2001 Tamar