The A-Word, Diagnosis: Part 1

Journal Entry: Cheryl
November 3, 2010

I’ve been chewing on the word for about 18 hours straight and it still tastes bitter. I’d like to spit it out and grind it into the dirt like a nasty cigarette butt, but it wouldn’t change anything.

My son was diagnosed with autism yesterday.

Mostly, I think they’re wrong. The “experts” spent a total of about three hours with Jack Riley, during which they observed him and interviewed us. We were never encouraged to join him in his activities so I think they missed out on his truly bright, happy, social tendencies. He’s not even two, yet a lack of intense warmth to strangers reads like a problem. A serious problem. At least it is when combined with other behaviors: he lined up the cars they presented him with, engaged in a bit of repetitive play with a tree house toy and was a bit less than cautious when it came to climbing chairs, tables and poking his finger into a phone jack. To write it seems a little less of a mystery why they came to the conclusion they did. And it’s not that I hadn’t considered the “A-word” before. I’d asked our pediatrician about it when we observed Jack Riley shaking his head repeatedly… or spinning in circles. I was assured by the doctor and most parent friends that all kids do these things, as well as lining up toys and ignoring parental direction when particularly focused on an activity.

But the fact that at 22 months, Jack Riley had not yet said “mommy” or “daddy” with any verifiable meaning behind it made me consult Dr. Google. Really the worst diagnosis I’d come up with was PDD-NOS—and a mild form of that—when considering Jack Riley’s behavior. I never thought they’d say—flat out, no apologies—AUTISM.

They say they don’t know how serious it is until the speech comes. But I think that will come quickly. I really do. Though he didn’t utter one word to any expert during his evaluations, he’s been quietly (!) perfecting both “cat” and “down” lately—and used them both last night… as if he knows it’s now or never.

I have so many feelings about this diagnosis. I’ve read there is no cure… which just puts me back into the school of thought that he doesn’t REALLY have autism—just shows a few too many signs of it.

I’ve read that “lots” of people with autism learn to live independently. Lots? Independently? That doesn’t sound like a positive outcome. The homeless guy on the street lives independently in a way. So what? Will Jack Riley be able to play sports and date girls and have babies and pursue a crazy exciting career (not necessarily in that order)?

Because of this—I am compelled to challenge the diagnosis. Not because I don’t want to him to get all the therapy they’re proposing, but because a label of autism is a life sentence. No cure. But he might live independently. Seriously? This kid is so happy and beautiful and loving and smart. Yes: smart. He is great at puzzles and is manipulative. It takes brains to be manipulative.

I fear that much of what went into this diagnosis is related to things we haven’t explored with him. We don’t give him opportunities with a spoon or fork. We don’t feed him a wide variety of foods—in favor of taking the easier route. We haven’t exposed him to other kids very often. If he was a good eater and knew how to play with others I think it’s possible they wouldn’t have defined him so quickly and with such certainty. They did observe him doing imitation play: feeding a bottle to a baby doll… and answering a phone – both behaviors not found in children with autism, right?—but it wasn’t enough to ward off the ultimate label. So now what? They’ve recommended a very aggressive therapeutic approach: some 20 hours per week, plus speech therapy, plus classes for us. And that’s just if I heard right. I was a little bit in shock when we got to that part. I don’t really know what’s next.

November 3, 2010
It feels as if someone has died. Sleep + waking up means hearing this news all over again. Every distraction ends in remembering. Worse, this has me looking at my son differently. I love him the same—more, if that’s possible—but every word, every moment of fussing, every smile… is framed by this new definition.

I wish he’d said “cat” or “car” yesterday—he said them today. I wish he’d lit up like he did this morning when they were watching.

He pitched a fit earlier and I found myself wondering if this is it: the tantrums.

I don’t know what to tell people because I don’t really believe it myself… and don’t want to open the doors to judgment—good, bad or pitiful—just yet.

I saw a baby in a restaurant today—he was crying and I wanted to comfort him in the worst way. And part of me was envious because even though he was too little to even worry, chances are that he’s healthy and his parents will never suffer with the worry we’re dealing with right now.

It’s hardly fair.

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