25 July 2001
A friend asked me recently whether a relative’s child might be autistic. From her description of him, it sure sounds like he’s on the spectrum. The next question, and it’s a doozy, is how to bring this up with his parents. It’s come up on my special needs kids list too. How do you tell someone their kid might have a developmental disorder? As a parent, you don’t want to believe it. It feels like an insult. How could your precious, wonderful, charming child be defective? It’s impossible. But someone has to say it or the years will keep ticking by and the kid will lose any chance of full "recovery", as they call it. I call it living a happy, full life. That’s a hell of a thing to deny a child.

On the other hand, there’s denial and there’s plain old fashioned ignorance. That was us. When we visited New York a year and a half ago, my father noticed that Damian (then eighteen months old) wasn’t into playing with him, didn’t engage the way other kids his age would do. He brought it up to me later on the phone. He said it point blank: "I think he might be autistic." But I didn’t know what autism could look like, I didn’t know that it had so many faces. I thought he was just pouting because Damian didn’t warm up to the Grandpa he hadn’t seen for over a year.

Was there a way he could have told me what he saw, what he wondered, and had me actually hear it? I don’t know. I don’t know if I was ready. But I remember wondering about Damian on that same trip. I compared him to my friend Cathy’s twins, born just three days after him. They could ask for juice when they were thirsty, they slid down the slide with complete fearlessness. Damian couldn’t and didn’t. And he flinched when Isaiah came over to him while he was playing.

I knew he was different. I didn’t know for sure something was wrong. I might have heard it if my father had used different words. Maybe if he’d seen Damian at Cathy’s, he could have talked to me about developmental issues rather than socialization problems and then I might have allowed the thought to resonate. Thing is, though, it wasn’t just my ignorance, it was my father’s too. When he brought up autism, he started asking me questions. Did Damian smile? Yes. Did he laugh? Oh yes. Did he look me in the eye? Yes, sometimes. Well, okay, then. He must be fine.

Most of us -- even my father, a man with a degree in psychiatry and very nearly one in neurology -- don’t know what the word autism really means and doesn’t mean. We associate it with mute children sitting in the corner rocking and avoiding all human contact. We associate it with people who will never, no not ever, be able to live in the world, not with all the therapy in the world. We associate it, in other words, with a life sentence. No wonder we don’t want to hear the word. No wonder we can’t understand it when we do. It doesn’t compute, doesn’t fit. Not my child, not that.

As a result, people don’t tell you the truth. We’d been out of touch with a friend for a long time. Dan called her recently, told her what’s been going on with Damian these past months. She said, "I thought so. I saw it, last time we got together in that restaurant. Remember? I asked you if he answered to his name? That’s why I asked."

Then why didn’t you say anything? Damian was two then. We lost nine months. He could have been nine months farther along by now. He’s at an age when every month counts. That’s a lot of time lost.

If we’d have believed her, that is. If she’d succeeded in getting us to pay close enough attention. I don’t know that she could have. The world is busy telling you that it’s good to be an individual, good to be quirky, that you don’t want to fit your child into a mold and besides, all kids develop differently, after all Einstein didn’t talk until he was four years old! Everyone’s so busy reassuring you that you don’t need to worry that when someone turns around and says maybe you do, it comes as a shock. It’s far easier to dismiss it than to hear it. I imagine it’s far easier to lash out than it is to take action. It’s like when your best friend tells you the man you’re insanely crazy in love with is methodically sleeping his way through the entire staff list at his office, even his grizzled old boss. Do you believe her? No, you probably think, "She’s just jealous, she just wants to poison my relationship," and jettison the friendship instead of the relationship with Mr. Sleep-His-Way-To-The-Top. And that’s just love. Imagine the powerfully fierce protective instinct that kicks in when it’s your own child. No way no how is my little one damaged goods. No sirree, you’re just imagining things because you want to hurt me.

So our friend, instead of telling us what she saw, encouraged us to put him in preschool sooner rather than later, figuring the contrast with typical kids his own age would reveal the truth without any friendships trampled in the process.

She was right, too. Sort of. Sitting on the floor in that damned classroom, I saw very clearly. At first, I thought some of the more verbal boys were precociously talkative. Then I realized, no, Damian’s lagging behind. And then someone told me. It was only the second week. I wasn’t alone yet. Other mothers still lingered making sure their children acclimated. One of them, someone I’d known for a long time, said, "He’s either brilliant or there’s something wrong. Why don’t you take him to a pediatrician? You should get it checked out." She was the blunt type. I knew this about her and so I wasn’t offended. Instead I listened. Dan had said it before but I wasn’t ready to hear it. After seeing the other children, hearing it from a woman whose son was just two weeks ahead of Damian chronologically but too far ahead of him socially, I could finally hear it. I could finally call for a consult. We called it a speech consult. We thought it was no more than a benign delay, nothing a little speech therapy wouldn’t solve. Dr. Jay saw more. Moments after he walked in the examining room door, he said, "But you said speech consult, not behavioral...?"

And that was the beginning. Even so, it might have taken us several more months to hear the truth, to understand it. If it weren’t for the Web, we’d never have guessed on our own. Professionals don’t want to say the word. I still haven’t quite figured out why, but it’s too bad. If a friend hadn’t told me you should say "autism" when you call the Regional Center for services, you’ll get tested faster, if she hadn’t steered me toward an autism checklist so I could sound plausible when I used the word, if I hadn’t filled it out and checked the totals once, twice, three times, with the result always coming out in the problem zone, if I hadn’t done all that and Dan done the same, reading and reading and reading some more and saying, "Some of this doesn’t sound anything like our child, but damn if some does," if we hadn’t done all that, we might not have been ready to say the word ourselves and therefore heard an acknowledgement in return.

If we hadn’t known what we were looking at as early as February 1st, little more than a week after that first consult with Dr. Jay, we might not have gotten everything else in place so quickly. We wouldn’t have known to read Greenspan. We wouldn’t have known to ask for floortime therapy, we wouldn’t have known to push for occupational therapy ("after all, it’s only a speech problem") or get him in the right school program. Two and a half months went by between Laura’s confirming nod and Damian’s full panoply of services. Two and a half months is nothing. What about two and a half years? I feel sick thinking about it.

Denial can deny your kid the tools he needs to get back on track. Why would anyone do that to a beloved child? It goes back to the meaning of that word. Autism.

I cried so easily those first few weeks after we figured out Damian’s diagnosis. I felt like an open wound. I felt like something was damaged in him, something that could never be repaired. I remember looking at him asleep in his bed. His face so peaceful, so sweet. Looking at him with this intense pang: he looks so normal, he doesn’t look broken at all.

My eyes told me true: he’s not broken. Far from it. He’s still the child I knew before the diagnosis. He’s still my bright, loveable little boy. It’s been verified, in fact. His intelligence has now been documented by specialists. His sweetness has been observed by therapists who have been around dozens of small children. He’s a special kid and I don’t mean that in the special needs sense.

It’s still hard. Of course it is. Do I wish he didn’t have to go through this? Of course. It’s only human. I look at other children and see how easy it is for them to talk, how easy it is for them to make friends, and yes, I feel a pang.

But now I also see that Damian’s issues may allow him to be an extraordinary person later in his life. Einstein was probably autistic. Bill Gates may be too (Asperger’s, a high-functioning variant), and Andy Kaufman could have been, along with so many historical figures it would make your head spin. I was just reading a few days ago about a new book: Diagnosing Jefferson. That’s right, Thomas Jefferson may have been on the spectrum. Temple Grandin (a successful high-functioning autistic woman who has become a spokeswoman of sorts) commented on the book in an Amazon review, saying "A small amount of autism traits can provide an advantage." Interesting, no?

We haven’t lost Damian to the autism. The opposite, in fact. Knowing his issues allows us to help him become more and more himself. Denial can be a powerful thing. The truth is more powerful still.

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