Capturing Autism

Author’s Note: For the purpose of protecting my 5-year-old autistic son’s privacy, I’ll call him “Brooks.”

Brooks is an autism success story. Or he is well on his way to becoming one. But like everything else about this puzzling neurological condition, any definition of “success” is complicated.

Yes, there are specific challenges that Brooks has overcome one hundred percent. They are now set in stone; that is, we are confident they will not reverse themselves, and our family owns them proudly. There are big ones and small ones, and we are fortunate enough to have a long list.

I’ll start with the huge arena of speech and language. When we took him out in the stroller, Brooks used to point and make broad inarticulate vocalizations that made it impossible to respond to his rare attempts at a social interaction. This was heart-breaking, especially since by then, all his typically-developing peers were having full-on conversations with their parents, and all my husband and I could do was watch longingly. These days, we constantly have to remind Brooks to use his “indoor voice” on the A train when he casually chatters on and on: “What stop is next, Mommy? The A train is an express train, but I think the C train is a local…” He often charms even hardened NYC subway riders and I get compliments on my well-behaved and happy little boy. I smile and say thank you.

Then there are smaller things like haircuts. Brooks used to completely melt down even before anyone ever touched his hair; simply walking into the waiting room of the salon was enough to set him off. These days, he loves going: He sits in the cool chair that goes up and down, he enthusiastically (and politely) asks if it’s time for the blow dryer, and the other stylists often compliment me on such a well-behaved and happy little boy. I smile and say thank you.

And these jaw-dropping transformations keep coming. Just this past weekend, our family attended the circus. A few short years ago, even way up in the nosebleed seats, Brooks was so overwhelmed that he cried and screamed until we finally had to leave. But this past Saturday, he laughed at Grandma the Clown and said “Wow!” during the high-wire act. More compliments. More smiles.

But these smiles of mine are complicated. While they mostly express my inescapable joy that Brooks is deserving of compliments even by strangers unaware of his diagnosis, they also have a knowing, melancholy aspect because even though he looks “normal,” his brain works differently. Not necessarily better or worse, but differently, and that is something that strangers will never know or understand. In fact, even well-meaning family and friends who do know, don’t really understand. And how could we expect them to, when the truth is that my husband and I don’t fully understand?

For all of Brooks’s miraculous developments, he is still not a child who can attend a mainstream school, or even a regular integrated classroom—we had to move 160 blocks uptown to get him into a program that provides the wide range of specific one-on-one services he needs. And when he chatters on and on, his language is often repetitive and slightly obsessive. And when he gets a haircut, I have to prompt him to say hello and goodbye. And during the circus, he watches many of the acts with an odd curiosity instead of laughter or delight. Maybe because he can’t read certain social cues. Or maybe because it’s too loud. Or maybe because of the smells. Or maybe because he needs more sensory input. Or maybe because he needs less sensory input. We still sometimes can’t figure it out, and we’ve been at this since he was 18-months-old!

Does this mean Brooks is not an autism success story? It all depends when you ask me that question. Is it at the end of a long day when I’m frustrated that Brooks can’t change into pajamas by himself because his brain can’t sequence the number of steps necessary to get through it all? Or is it right after his teacher tells me that all by himself, for the first time ever, Brooks approached a classmate and said: “Do you wanna play with me?” and sat and played with the boy for a full 15 minutes?

Tomorrow is Thanksgiving. I’m thinking that perhaps my husband and I will take the day off from being ever vigilant of our son’s deficits, and instead simply be thankful for his remarkable progress since last Thanksgiving. And, just as importantly, we will look forward to the extraordinary changes that we know next Thanksgiving will bring. Happy Turkey Day, everyone!

This post was originally published on Inisdeschools.org.