what remains
19 May 2004
Ever since the developmental pediatrician said Damian is going to lose his diagnosis, I’ve found myself thinking about the condition itself. Autism. Oddly, I find myself accepting it more unconditionally than I ever have. As if the fact that it no longer fits as well allows me to finally see it more clearly, without prejudice.

What am I talking about? This is hard to explain but something I feel deeply and I think matters a lot to my son’s development. It’s simply this:

You can see Damian as very nearly typical now if you choose. He looks good on paper and often in real life too. Friendships, a prodigious imagination, very attached to us, very sweet, often perceptive.

You can instead see him as still impaired. Fidgety, stimmy, loses focus, can’t sustain interaction, overanxious, some processing delays and word retrieval problems. Many nonsensical rigid little rituals. Gets overwhelmed sometimes and shuts down.

Both are equally true. So is he autistic or not? He is and he isn’t, which means ultimately that he is and yes, always will be or always will bear traces and will have differences. Will it interfere with his ability to have a fully involved and enjoyable life in all the ways we consider such a life to be lived? Maybe in some ways, but really, not much more so than anyone else. So what is the label, then? It’s a marker of a certain set of issues. You can mitigate those issues, absolutely. Damian now is a different child than he was three years ago. This should be obvious to anyone who has read my archives. But does that mean he’s cured? I would say no. But I no longer care. Because see above: I believe he’s going to be fine. Even with the label. Even with the differences. At a certain point that’s all they are, differences in the way he perceives the world and responds in his brain and in his body to that input. Not worse. Just different. The goal, to my mind, is not recovery but wholeness.

Back to how he is now, though: we continue to work on his deficits. We continue to worry for him. Today’s concern: Since he stopped getting clinic-based occupational therapy, he’s noticeably less comfortable in his body. Sometimes when you ask him a question, he gets up from his chair, spins once, answers, and spins again. Sometimes he jumps like a wind-up toy as he talks to you. These are signs of something out of whack in his sensory system. He needs more proprioceptive and vestibular input to steady himself, to help his brain work. We’re trying to figure out how to help. Private OT? The advantage there is that we won’t need to follow the school district’s ideas of appropriate goals, we simply can say “He needs help with sensory integration” and let the therapist get to it. Tai Kwon Do? The advantage there is that he’ll be in a group of children, he’ll learn poise and body strength and focus too. Rock climbing? He went with his friend Corey last weekend. Climbed the transverse wall with focus and determination. Proprioceptive input on his hands (gripping so hard on those outcroppings), motor planning to get to the next foothold/handhold, strength. A good thing all around. Swimming? Body awareness, sensory input from head to toe, a gentle massage underwater.

I don’t know how many of these we can fit into his schedule (or our budget) but we’re going to try. He needs it. His body needs it. Some say a window closes at age six, that a child’s brain structure loses its plasticity and can’t change after that. I’m skeptical about this, and in fact others disagree with the assessment but no matter what, it’s worth doing all of this and more to help him learn what it feels like to be in his body completely, to be centered and strong and integrated even if it’s always something that comes and goes, that he needs to work on and work with and understand as an issue in his life.

We can also teach him how and when to seek what he needs. And he’s starting to. He needs to chew sometimes (oral motor input, proprioceptive input) and finally now instead of sticking his fingers in his mouth or mouthing his shirt, he’ll ask for or fetch a teething spoon I keep in my backpack for him. Yesterday he came up to me in the kitchen and put his hands on mine, pressing down. This is something I’ve done with him, putting my hands under his and lifting him up off the floor. It gives him intense input (think about it, all that pressure, your body suspended by the palms of your hands) and centers him wonderfully. Now he’s started to recognize, “Hey, I need that,” and instead of toe walking or spinning or jumping around the room like a marionette on amphetamines, he comes to get what he needs from me. I consider this a wonderful step forward.

It’s called a sensory diet, all this input, giving him the body regulation he needs. And when he can do it for himself, can identify when he’s feeling off and act on that in appropriate ways, he’s well on his way to fitting in with the flow of humanity around him. In conjunction with the OT and the rock climbing and whatever else we add to his already overbooked schedule, his sensory system – still his biggest challenge – may start to feel less like it rules him and more like it’s a part of him. His body, his mind, his senses working together. Autism fractures that integration. We can help him pull it back together.

I think now that the lingering effects of his autism will mean an explicit awareness of things other people never think about. Damian – and other children like him – may need to stop and say, “I can’t handle this right now” and leave the classroom to do a lap around the school yard, then go back in and take his seat again. He may need that wad of gum to chew during a test, that trampoline in the guest room, that wrestling match before lunch. But he’ll know he needs it. And ultimately that will make him his own kind of normal. Which is all I ask and all I want.

I don’t want to stamp out all evidence that this child was once noticeably autistic. I’m not sure that’s possible and even if it were, I think it would damage his sense of self, as if it’s wrong and bad to be autistic when it’s just another aspects of who he is. And ultimately it’s beside the point, losing the label. The point is happiness and wholeness, not sameness. So what if he’s never typical? He’s a cool kid and with more intervention he will become more and more able to show that to the rest of the world. And that’s all that matters.

last // home // next

current log / Damian essay archive / other essays archive / what's all this, then?

copyright 2004 Tamar