on the outside looking in
7 February 2001
Autism is not a disease. It’s not catatonia. It’s not the stereotypical idiot savant, or at least that’s only a small part of what it can be. It’s not one thing at all, but a spectrum. A continuum, ranging from severe to hardly noticeable.

It is, however, a hugely fucking scary-ass word.

Autistic children see the world differently. Sideways, upside down, through a blurred window pane, through a field of sharp tacks. It depends on the child, depends on the brain. The withdrawal from the world, the strange behaviors: head banging, spinning in place -- they’re all reactions to a sense of being overwhelmed, they’re all ways of trying to shut out what’s too hard to handle. Imagine if the gentlest touch felt like sandpaper -- no, worse -- felt like blistering heat. Imagine if loud sounds: vacuum cleaners, rap music -- assaulted your ears like cannon fire. Imagine if you saw a face as blank, unknowable, impenetrable. If you lost the ability to read nuance in the twitch of an eyebrow, to hear attitude in the lilt of a phrase. Imagine the life of so many people with autism and you’ll understand why they’d rather stare at the map patterns on the Weather Channel than face the world. Why they burst into ferocious tantrums and find oddball ways to soothe themselves.

No, this is not my son. But it might have been. Autism is not the freaky symptoms of the disorder, it’s the disorder itself. Something not right in the brain, something developing, as that first speech pathologist said, on the wrong track.

I've been obsessively reading accounts of autistic children. Children who flinched from touch as babies. Who arched their backs when their parents held them. Damian did that. In fact, he did it in the womb the night of his birth. My water broke, I labored, I pushed. And pushed. He was stuck. His back arched, his head was tilted chin-up rather than chin-tucked and he couldn’t come out.

The big difference is that after he was born, Damian was okay with being held. If he was indifferent at first, he became quickly addicted. We swaddled him, we wore him on our chests in baby carriers, we draped him across our chests for impromptu afternoon naps. So he got the hugs and cuddles and body-to-body warmth infant brains need to develop along the proper channels. Or at least, he got enough and it did enough so that he’s a loving, bonded child.

That is, if his problem is indeed on the autistic spectrum. Which it probably is, except maybe it’s not. These last few weeks have had so many ups and downs I feel permanently seasick.

Last week Damian and I had our first visit with Laura, his new speech therapist. She and I talked, she tried to get Damian to respond to her, with limited success. We talked some more. I asked her what she thought. She said speech pathologists aren’t allowed to give diagnoses -- she underlined and highlighted the phrase just in case I didn’t get it -- and then went on to say that "based on what you’re telling me and what I’m observing, my impression is..."

She trailed off. I filled in the blank: "high functioning autism?"

She nodded. "On the continuum, anyway."

So. There it is. Someone said it, someone confirmed this is for real, not just the result of too much late night reading. I cried that night, or at least the next day. The ugly kind of crying, where your face gets screwed up. The kind that really hurts. My baby, struggling through mud. My baby, maybe having something off in his brain for the rest of his life.

Today, though, Dan talked to the first speech pathologist, the one who evaluated Damian two weeks ago. I’d called to get her to send us her evaluation. She called back. Dan reported the conversation: She said she'll write an evaluation for the insurance company and fill Laura in on the phone. Dan said "so it’s on the autism spectrum, right? A mild form?" She said no. She thinks it’s a speech impediment. She’s seen kids like him, and they usually make huge strides in six months, a year at most.

What a lovely idea. Speech therapy for a year and then voila, a connected, unafraid, up-to-speed little Damian.

Why am I skeptical? Maybe because I see him in the playground, cringing when his classmates race by, afraid they’ll throw him off kilter. Maybe because I see him plugging his ears when it all gets too much for him. Maybe because I see him shaking his head rapidly and bouncing against the back of the armchair in a manic bout of self-stimulation (no, not that kind of self-stimulation -- it’s just fun to bounce). Maybe because another mom says she’s seen him fluttering his hands when he’s swarmed by kids in the classroom, overwhelmed by the chaos. That’s self-soothing. That’s potentially autistic. Maybe because I know he can be very passive, crying instead of problem-solving when a toy breaks down. Maybe because I’ve seen him lining up trains, trucks, and even animals in single file. Maybe because I’ve seen him lying on the floor (shutting the world out) running his Brio trains back and forth on the track. Back and forth, back and forth, back and forth. Mechanistic play, not imaginative. Maybe because I read an account of a high-functioning autistic kid -- I think he has Aspergers, a milder form of the syndrome. His mom writes about how he quotes from videos just the way Damian does from books, using the words in an appropriate context. It’s a different kind of learning, a different kind of processing. They’re reaching for what they have in their storage banks to respond to the situation at hand.

Still, it’s possible that everything I’m seeing as an echo of autism is instead some other brain tic isolated to speech processing and maybe some motor processing that makes him feel less assertive with other kids. And it all makes him feel less secure in the world, but in a lesser way than a child with autism.

I see ways he seems non-autistic too, ways he doesn’t fit the profile. He meets our gaze most of the time. He feels pain (some autistic kids don’t). He can handle loud sounds (he loves watching the food processor do its thing) and responds to soft whispers. Neither oversensitive nor underreactive to sound. Or touch, for that matter. Or visual stimuli. And he shifts quickly from one activity to another: just say "Damian, want a bath?" and he’s off, running down the hall. He doesn’t have temper tantrums (which is not to say he never gets mad!), and he can be reasoned with. He points to what he wants, he now consistently shakes his head to say "no." He follows complex requests: "go get the fireplace broom so we can sweep up this rice." He hugs. He snuggles. When he speaks, he colors his tone expressively, not with the flat affect common among high functioning people with autism. He engages in imaginative play -- more so lately as we’ve spent more and more time on the floor with him, showing him how to play "let’s pretend." He understands emotions: yesterday morning at school, he freaked when I went to the bathroom without him. So when we got home, I had the baby train freaking because it couldn’t find its mommy. He took the baby train from me, put it nose to nose with the mommy train (kissing), and then had them lie down side by side (snuggling). He’s even starting to warm up to the other kids at school. Yesterday Tyson (the adorable firecracker who kisses his cheek and nuzzles his ear five times a day) sat down next to him at snack time. He smiled.

Autism or speech deficit. Does it matter? Yes. It does. I read accounts by high functioning autistic adults, people like Temple Grandin, and I’m struck by how difficult it is for them to understand interpersonal cues, how tiring the social world can be, how hard it can be to connect with people. I don’t want that for my child.

I console myself with the thought that Damian got his cuddles in, he understands emotional connections. The rest is a matter of CPU. So what if he grows up a little eccentric? There’s good reason to believe Einstein was a high functioning autistic -- he didn’t talk until he was four, he was a tantrumy kid and a very idiosyncratic adult, and many of his descendents are on the autistic spectrum. He would apparently trail off in the middle of a lecture, completely lost. I read somewhere that he needed to have his door painted red so he could find it again. When asked how in the world he could come up with such a profoundly different way of thinking as the theory of relativity, he said that it was because he didn’t take the laws of physics for granted the way other scientists did. He questioned everything the way a child would. The gift of autism is an ability to see the world through different eyes. You literally think different.

No two people experience autism the same way. It’s not a disease. There’s no cure. But there is treatment, and on the high end of the curve, there’s life as a complete, albeit unusual, person.

If Damian doesn’t turn out to have autism, this will have been an incredible time out of time for us. An immersion in something heretofore so alien and terrifying, something that’s now starting to make a kind of sense. And we will cherish the normalcy in our son as well as the extraordinary we already see in him.

If Damian does turn out to have a mild form of autism, this will be the beginning of a journey. We will learn as he learns. We will all have to make a new kind of patterning out of the world we experience. And we will cherish the normalcy in our son as well as the extraordinary we already see in him.

I see Damian now and I love him even more, if that’s possible. Something’s going on inside him making it hard to talk, hard to be around other kids, hard to trust his own body on slides and suspended in midair (he’s never jumped without supporting hands holding his). But despite that something, he’s right there. Present and accounted for. He loves. He connects. He expresses joy and pain and need and desire and listens to reason and follows instructions and soaks in everything he sees, smells, hears, touches. If he’s got some shaky sequencing in his brain, he’s even more brave and strong and smart and lovely than I thought. And we’ll get through this, whatever this turns out to be.

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