that word
4 February 2002
This past Friday was an anniversary of sorts. Last year on that day I brought Damian to see Laura for the first time. Laura was his first speech therapist. His first therapist of any kind. Our first foray into this world which is now our life.

More than that, she showed me The Child with Special Needs and urged me to buy it. Greenspan’s Floor Time approach to child-centered play therapy has become the underpinning of nearly everything we do with Damian.

But most of all, on February 1st last year, I asked Laura The Question. So very tentatively. With such trepidation. "Is Damian autistic?" Her answer: "Probably so, at least somewhere on the spectrum." There it was. Our first confirmation that we weren’t imagining things, that we weren’t awfulizing as we searched the web and plugged in behaviors that seemed odd but turned out to be symptoms of something far more serious than a kid being quirky.

It was strange to hear it from her lips. So strange. Like stepping through the looking glass. Yes, your son is different. Yes, your son is autistic. Words have power. This word in particular has more power than it should.

I meant to write this commemorative entry looking back on how much Damian’s changed over this past year, his amazing, joyful progress. But I chart that as we go. I’d just be repeating what you already know if you’re a regular reader. Interesting, maybe, but ultimately not all that illuminating for you or for me. He’s getting better. Much, much better. A testament to the efficacy of early intervention. To the insightful nature of the Floor Time approach. To the intelligence and determination of one small child.

Instead I want to explore my relationship with the word. Autism. A year ago it terrified me. Admittedly, I knew Damian wasn’t going to suddenly turn into Raymond Babbitt a/k/a Rain Man. If he was that badly compromised, we’d already know it. But as I read accounts by Temple Grandin and others with high functioning autism who tell their stories by the dozens on the web, I felt a deep sadness. Was this what my son had in store? A lifelong inability to read people’s faces or understand the subtleties of interpersonal communication? To have a limited palate of five foods, all unhealthy? To have rigid rituals that must be followed to the minutest detail? To have unexpected rages, uncontrolled emotional reactions? To be so fixated on the concrete world that he’d be unable to appreciate the beauty of magic hour or the sound of crickets? To fixate on arcane topics, regaling his unwilling listeners for hour upon boring hour? To not know how to tell a white lie to make someone feel better? To be unable to be intimate with anyone? To not know what it’s like to love and be loved?

I can’t know for sure what kind of adult Damian will become. But I’m starting to get a sense that at least some of this litany is not and will never be him. He will probably always be a little eccentric, but I believe he will be able to love and be loved in return, able to appreciate beauty and humor, have some measure of empathy and even tell a lie or two. I see the seedlings already sprouting in the fertile soil of his mind.

The other day he watched me get dressed. I’d chosen a silky burnt orange top. As I put it on, Damian commented, "Mommy’s putting on the pretty shirt." Another time: I came out of the bathroom wearing a towel turban. Damian laughed when he saw me: "Mommy’s silly!" Both were value judgements: he was responding to something beyond the concrete fact of orange shirt and towel hat. It was a pretty orange shirt, a silly hat. Which is a sign that his mind is developing an emotional context for what he experiences.

Other hints that he’ll be more okay than not: He’s actually quite good at reading faces and voices. If I look mad or my tone is angry, Damian will get upset. And he has never had the kinds of behavior problems I see in other kids on the spectrum. No wild rages, no impulse control problems. He doesn’t fixate on one topic, either. He likes trains, sure, but he likes trucks and tools and dollhouses too. Maybe I’ll eat my words later, but I can’t see him cornering you at a party in twenty years and chewing your ears off about car engine coolant or semiconductors or obscure butterfly species.

A year ago he was developing rigid little tics: his shoes had to stay on in the house. Books must never have dust jackets. Real jackets too were an abomination. Sweatshirts were the only possible outerwear. And so on. He still has a few quirks: shoes come off, but socks must stay on, for instance. But as he feels more comfortable in his world, he’s gradually relinquishing that need to control the details of his environment.

I can almost hear your question: "He doesn’t sound autistic. Are you sure he really is?" The answer? I don’t know. It depends on your definition. If you look at classical autism and you compare it to Damian, then no, he’s not autistic. If you analyse the underlying neurological issues he had and has, then yes, he probably is. Thing is, some kids can look autistic when they’re very young, but are later diagnosed as simply having speech delays or sensory integration dysfunction or hyperlexia (though many people believe that hyperlexia is in fact on the autistic spectrum). And we’ve all heard about the smart kid who was bad at sports and had no friends. A lot of gifted children talk late, did you know that? The line between gifted and autistic is more blurry than you’d ever imagine.

So how do you know whether a child like Damian is truly autistic or just SI or speech delayed or, hell, even a genius? What is autism, anyway? If he gets so much better in another year that he no longer fits the definition, does that mean he never was on the spectrum or that he was and he got cured? Is a cure possible? What does the word "cure" mean? Does it mean "able to coexist comfortably with the rest of the world" or "with no remaining oddities"? Obviously the only thing that matters is the former. I don’t care if he bounces in his chair like Bill Gates at a Microsoft staff meeting, if he loses his train of thought occasionally like Einstein giving lectures, if he -- more soberly -- has trouble understanding complex stories or raising his hand first in class. I just care that he can be happy, that he can love and be loved.

I admit, sometimes I do care what you call it. Sometimes I think he’s really just got a severe case of sensory integration dysfunction that’s masking as autism. Sometimes it’s a comfort to think this; it seems to mean his potential is greater, his future is brighter. But I’m not even sure that’s true or that there’s much difference at all between "yes, he’s mildly autistic" and "no, it was a mistake."

The truth is, we just don’t know how he will develop, label or no label. Those first person accounts by high functioning adults are no indication of what my sweet boy will be like as an adult. He’s getting early intervention of a kind that didn’t exist even ten years ago. His occupational therapy focuses on sensory integration work. His floor time therapy focuses on emotional development, not behavioral modification. Even his speech therapy focuses on natural environment work, bringing language up in a non-forced way, with a natural context. It’s all like learning to ride a bike with training wheels; he’s getting the feel for balance and speed but with tons of support.

I’ve read several descriptions of life as an adult with Asperger’s, which is essentially autism without the language delay. They paint a painful picture of deficits and discomforts. But Asperger’s is typically not diagnosed until a child is at least in grade school. Damian was diagnosed before he was three years old. It may not sound that crucial a difference, but it is. The things that a normal child learns by inference we need to take Damian by the hand and lead him through, but he’s getting the foundation abilities not much later than any other kid. He can swing and slide and is developing upper body strength and bilateral control and the ability to take challenging sensory experiences in stride. He can talk in complex sentences. He wants to communicate, and now he can. We’re working on abstraction, symbolic thinking and empathy and all at an age where his mind is hungry to learn and flexible enough to change.

If you lay the foundation properly, there’s no reason to assume the building won’t rise straight and tall. The accounts I read are by people who didn’t have this solid, all encompassing groundwork at age three. Of course they still have to shut down when they get overstimulated. Of course they get overstimulated more easily than anyone else. Of course they never learned to read social cues. Everything they learned was most likely by rote or logic, learning from the outside in. We’re trying to teach Damian from the inside out. It makes a huge difference.

Do I sound overly optimistic? Maybe I am. He still has deficits and I don’t know how many will be enough improved to no longer get in his way. There’s just no way to predict how Damian will turn out, how many of his current issues will still be visible. That’s the point, though. We, and other parents like us, are walking a new road. We don’t have any map to tell us what’s at the journey’s end.

Part of the problem is the word itself. If I tell you my son is autistic, you’ll probably look very sober indeed and imagine a kid who is the opposite of fun. You’ll probably be afraid to say too much or ask too many questions because, you know, this is serious stuff. Scary stuff. Poor kid. Poor mom. Probably doesn’t have a real relationship with her kid. Better just look sympathetic and keep your mouth shut.

Well, what if I tell you instead that he has a multi-system developmental disorder? You’d probably be curious, ask questions, try to understand. You’d think it’s something like a learning disorder, like dyslexia or ADD, only maybe more so. You wouldn’t draw any conclusions about who he is as a person.

Thing is, both terms mean the exact same thing. Both mean that he’s got some neurological issues that affect the way he perceives and responds to the world, to one degree or another. But one comes with too much baggage. Stanley Greenspan coined the MSDD term. I far prefer it. It’s about root issues rather than dysfunctional results.

Autism is a relatively new diagnosis, first explored by Leo Kanner in 1944. He only talked about the classic severely impaired kind of autism, the kind where a child rocks and flaps his hands and bangs his or her head against the wall and seems completely oblivious to other people. And for a long time people assumed you could help but you couldn’t cure. You couldn’t even make all that much of a difference.

A surprising number of people still think this is the only kind of autism there is. Damian’s pediatrician told us last year that if what he had was a PDD (ie: if it was on the autism spectrum) it was a lifelong disability. That he’d never live a normal life. Harsh, huh? And there are children that fit this assessment. I’ve met a few. They’ll be lucky if they learn to talk. But that’s clearly not Damian, and it’s too bad you have to use the same word for him and for them. It carries the wrong connotations.

When we brought Damian to see the doctor over the summer, Dr. Jay was surprised to see how much he had already progressed, that he could in fact get so much better. But it’s not really that suprising to me. There are plenty of kids in Damian’s school who are at or above his ability level but still considered on the spectrum. It’s a wide spectrum, and the prognosis varies with the child.

So what are the borders of this so-called spectrum? Where is the edge of normal? Is it possible to have a touch of autism but never even know? The answer, as I see it is, yes. Absolutely. If you look at autism the way Dr. Greenspan does, you see component issues: problems with motor planning, auditory or visual processing, hyper or hyposensitivity to touch, sound, vision and so on. You can have a problem in one or two areas without needing to shut out the world. You can have deficits in many areas but so mild they don’t really get in the way.

I’ve toe-walked most of my life. It’s just something I do on occasion: I walk on tiptoe. When I saw Damian doing it at age two, I thought "Oh, he’s taking after Mommy." Turns out it’s one of those survey questions: "Does your child toe-walk? If so, he might be on the spectrum." Am I on the spectrum? I’m fairly socially adept, I think. I didn’t talk late. I don’t spin or feel an urge to hang upside down. I don’t have the telltale flags. But I do toe walk when I’m stressed. And I’m hypersensitive to sound: a dripping faucet in another room can keep me awake for hours, a TV blaring from the building next door makes me want to scream. A white noise machine drives me bonkers. I’m hypersensitive to touch, too. A light touch at the wrong time feels like an abrasive on my skin. And I sometimes bite my cuticles, which I now recognize as seeking sensory input. Yes, I’ve got a touch of sensory integration dysfunction.

I suspect -- no, I know -- I’m not the only one. Some people are very comfortable in social situations, very poised, very much living in their bodies, and have no need for any kind of self-soothing tics. There are maybe five people like this on the planet. The rest of us sometimes feel awkward, sometimes stumble and trip and forget words, sometimes smoke like fiends, sometimes chew the ends of our pens until they’re nothing but twisted plastic. Sometimes we can’t think of a common, everyday word, sometimes we drift off and have to read and then reread the same sentence or ask people to repeat themselves because we didn’t follow a word they said. Sometimes we walk into a crowded party and wince at the chaos, sometimes bounce in our chairs, sometimes feel like we want to crawl out of our skin. Does that mean we're all on the spectrum? Obviously not. The issue, I think, is how often we have these problems, how much they affect our lives and our interactions with other people. We all get disorganized (in the neurological sense), it's just a matter of degree.

Who Damian is as a person, what his future will be, they’re not defined by his diagnosis. He may go through diagnoses like tee shirts, outgrowing first one and then another. For now, though, it doesn’t matter if the word is accurate or not. It helps him get services. It helps therapists understand the realm of the issues involved. Unfortunately it does sometimes get in the way, when a therapist starts defining everything he does in terms of his so-called disability and therefore misinterpreting what they see. But most of the time I see it as a useful tool, a way of defining the terrain.

I just wish it didn’t carry so much dark weight with the rest of the world. It no longer does with me. At least not most of the time.

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