Wednesday, October 23, 2013

At Least He Doesn't Look Autistic

"Well at least he doesn't look autistic."

In the months since Carter's autism diagnosis, countless people have tried to comfort me by reassuring me that there is nothing obviously, physically wrong with Carter...well, aside from his super thick glasses and ankle braces. I suppose what they mean is that he doesn't have the trademark characteristics of, say, a child with Downs; something that places him into a defined category of disability. I usually take the statements with a smile and a thank you. Surely they're just uncomfortable and don't know what else to say on the subject. In truth, it brings me no comfort to know that despite his unimaginable daily challenges, Carter is still "cute". Autism does, in fact have a "look", it just seems that no one knows what to look for. 

Carter falls into this awkward gray area where he is high functioning enough that he is going to be able to succeed on his own one day, but limited enough that we are going to have a hell of a time getting him there. There are moments, horrible moments, where I hate where Carter fell on the autism spectrum. If he had more severe symptoms, maybe his struggles would be more obvious to those who don't know him. Maybe people wouldn't stare at him in public, criticizing my inability to control his behavior and providing horrible commentary that is not at all out of earshot. They would immediately recognize that something is different about him and hopefully cut him some slack, but this would mean wishing a greater burden on my baby. If he weren't autistic at all, we wouldn't be in this predicament, but I would be wishing away one of the things that makes Carter so uniquely incredible. Autism is hard. 

One of the most endearing things about Carter, and something that makes me fall in love with him all over again on a daily basis, is his stimming. There are several things that he does for self-stimulation, most of them not so charming: his nails are bitten down to bloody nubs as a result of his ever-present anxiety; he repeatedly pounds his fists up and down his forearms out of frustration; he'll rub the flesh off any earlobe within his reach in an effort to calm down. What I absolutely adore, though, is what happens when he is happy...

I recently accompanied Carter on his preschool field trip to the pumpkin patch. I was heartbroken, watching him play alongside the other kids, but never with them. He would wander off by himself to spin in circles and, when dizzy, throw himself down in the mud. I was already battling tears (because I didn't want to be that crazy mom) when Carter found the slide. It wasn't much, just a wooden ramp up to the top of one of those big corrugated culvert pipes, but Carter immediately fixated on it. The ramp was too steep for him to walk up (he refused to wear his braces that day) so he dropped down on all fours and carefully made the ascent. At the top, he paced around, inspecting every inch of the top of the slide. He had to step aside to let a couple other kids through, then he went right back to his inspection, look...pace...look...squat...look...pace...turn...repeat. Finally, he was ready. He settled in at the top, and let go. Within a second, he had shot to the bottom so quickly that he landed on his bottom a good three feet from the base of the slide. I braced, waiting for the wail that usually accompanies any unexpected jolt to his senses, but it never came. Instead, a huge grin broke across his precious face, and he started stimming.

It starts in his hands, which begin to flap like a tiny baby bird's. Then, his entire body starts to quiver. His breath comes in quick gasps and it's as if he can't decide whether to laugh or squeal...the result is a curious combination of both. He starts to run, but there is so much joy and energy coursing through his tiny quaking body that he becomes increasingly uncoordinated and his run is then punctuated with clumsy skips. On this day, in the middle of the pumpkin patch playground, I could no longer hold back the tears as my son, trembling with elation more real and intense than any of us will ever feel, plummeted repeatedly down that slide and onto the muddy ground below. I've never seen anything more beautiful than this display of pure joy, nor have I ever seen anything "look" more autistic. 

Telling me that my child doesn't look autistic is in no way a comfort. It in no way takes away the worry I feel each day as I try to adapt the world around him so that he can function. I still have nights when I lay awake, looking for any trace autism inside myself, trying to figure out how my son ended up this way. I think of every single awkward social encounter I've had; break down my own, sometimes debilitating anxiety. When I don't find the answers there, I retrace every moment of my pregnancy, searching for the turning point where Carter went from neurotypical, to autistic. I've spent hours obsessing over this, as if I could come up with a better explanation than the arsenal of doctors from various specialties that Carter has at his disposal. I always come to the same conclusion. It doesn't matter where it came from or how it happened. That's not something I can change. I'm not even certain that I would change it. I have more love for this boy than my heart knows how to hold and I am so proud of him...for exactly who he is. 

I want the world to feel that way about him too. I want them to see him and understand him rather than dismiss his differences simply because he's "cute". I want them to recognize his more difficult behaviors as a result of the incredible overstimulation he experiences every second of every day rather than shake their heads in disgust at the "misbehaving" little boy. There's a quote out there somewhere that says something like "Autism isn't a disability, it's a whole different operating system." As corny as that sounds, nothing is closer to the truth. Sure, my blonde-haired, blue-eyed boy looks just as normal as any other kid, but what's going on inside of him couldn't be more different. I'm so tired of the look of sympathy people give me when I mention the word autism. It's nothing to be ashamed of. It's how Carter operates and it shouldn't be hidden, it should be celebrated and society should be educated. Besides, the signs are there for those who care to take the time to look. They're there in the gnawed off fingernails, in the self inflicted punches, in the tears when all of his senses are bombarding him at once, in his silence and the terror on his face when we are in a crowd.  During his field trip that day, I was told again that "he doesn't look autistic." I shook my head in silence, watching my hand-flapping, squealing son, shaking with joy over his last trip into the mud at the bottom of the slide; watching as he stood apart from the rest of the class, spinning faster and faster, pure bliss on his face as he collapsed to the ground; and I knew from that moment on, that the world can no longer be deprived of seeing him the way I do. 

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