“Mom, do I have autism?” my eldest peered at me through the eyes so dark and deep I could easily be swallowed by them.
My heart stopped a moment, my dancing cactus videos forgotten entirely, unsure of how to proceed. It was a good question. Something we had never spoken of because, well, it never mattered.
The answer was yes, yes he did have Asperger Syndrome. He’d had it since I’d pushed him out of my delicate girl parts, trying desperately to bring him to my breast on the birthing table, only to have him shriek in horror and disgust, something he did with alarming frequency for the next several years.
Clothes made him crazy, their textures too binding, the tags an endless source of frustration. Being held, something most babies (I’d heard) loved, well, he’d prefer to lay on his back, watching his mobile spin for hours upon end, the deep greens and blues soothing him in a way I never could. It broke my heart until it didn’t anymore because eventually, I stopped trying to scoop him on up, cuddle him close. I loved him from afar, my tears dotting his crib sheet as I stood above him, wishing I knew what went on in that glorious brain of his.
By age one, his love of the planets was obsessive. While he couldn’t tell me the name of the animals that lived in the house (dog, cat, for those interested), he could tell me all of the names of the moons of Jupiter – his favorite planet – and identify them from even the grainiest pictures.
Speech severely delayed, by age two, he was enrolled in both speech and occupational therapy, dutifully trucking back and forth to the Early Intervention center, day after ever-loving day. Eventually, he’d been able to touch varying textures of dry rice and beans, eat few things beyond his standard diet of oatmeal, graham crackers and cheese, and adapt his fine motor skills so that he could pinch small things, hold a crayon.
Speech therapy continued until his fourth year. He’d gone from mostly non-verbal – excepting, of course, anything related to the cosmos – to using a handful of words; more each day.
Our relationship had developed, too. While I’d still feel that scar tissue tightening up whenever he chose anyone but me to love on, I accepted that his love was different; unique. Just like his beautiful brain. It was simply different. Not wrong, not right, not better or worse, just different.
I accepted different.
Through all of this, we didn’t bother with labels. Not in my house. Ben’s Asperger Syndrome was no different than saying he’d inherited both my brown hair and long eyelashes. It was just a part of who he was. And that didn’t deserve a label or hushed meetings around the table.
I knew the slippery-slope of labeling and I wanted him to grow up as himself, not as what a syndrome may or may not dictate about him.
So when, at age ten, he asked me if he had autism, I didn’t know quite what to say.
So, with widened eyes, I spoke the truth:
“You have something called Asperger Syndrome. You have since you were a baby. You went through speech therapy to help you talk and other therapies to help you eat. Remember how your sister had speech therapy? You did too.”
His eyes opened so largely I feared they would fall from their sockets.
“But I’m okay?” he asked.
“You, like your grandfather, your uncle (my brother) and your own brother, well, you’re just quirky. You have things about you that are different than everyone else. But really, EVERYONE is different. Different is awesome. So don’t think about yourself as a “syndrome,” think of yourself as Ben. Because THAT is who you are.”
He smiled, the crooked teeth he’d gotten from his paternal grandmother peeking through, making him look like a bobble-headed jack-o-lantern.
“Yeah. You’re right. I’m just Ben.”
“I wouldn’t have you any other way.”
He then scampered off to celebrate his Ben-ness with his siblings.