I know you mean well. I do. I know you’ve seen the Lifetime movies and read about—and maybe even witnessed firsthand—children on the spectrum who can: write novels, kill it on the cross country course, solve math problems Rain Main-style in their heads, or take a car engine apart and put it back together—with their eyes closed. I know there are autistic toddlers who are going along, staring at ceiling fans and flapping their hands, who, one fine day, sit down at the family piano and play Mozart.
I like those stories, too.
But the spectrum, my friends, is broad.
My daughter Sadie, 14, is on it for sure. But her condition is complicated—Sadie was born with a rare chromosomal abnormality—a duplication of 15—which amounts to a potpourri of symptoms. Autism? In our world, autism’s sort of like a side effect.
Still, I’m certain there’s more to Sadie than meets the eye. Clear down to my toes, I am in awe of her—and, you watch, she’ll keep surprising me, again and again. Sadie has tremendous potential. But I don’t think it makes me a horrible mom to say out loud: a budding physicist or pastry chef, Sadie is not.
I’m okay with that, though getting okay didn’t happen overnight. Facing facts was terrifically hard. So when I tell you I have a daughter with autism, you don’t have to say Oh! I’ll bet she can do x, y, z…
It does not help. It especially does not help when you keep insisting.
It’s funny, how our culture places such value on intelligence. As if it were a virtue. As if it were noble to be clever, not a gift.
I am glad for books like Wonder and Out of My Mind, inspiring novels about young protagonists with big challenges—as well as razor-sharp brains. All in all, these books help us understand what it’s like to live on Different Street, which is a far cry from Easy Street.
But. I can’t help but feel when we look at a special needs story, there somehow needs to be a giant BUT—that we’d be squeamish without it. So-and-so can’t eat a sandwich without making a mess, but he’s got super-sized smarts, and he’s funny to boot. So-and-so can’t use the toilet on her own, but she has memorized (in order) all the U.S. presidents.
So what when there’s no obvious but, at least not the sort that makes viral Facebook posts or warm and fuzzy segments on the Today show?
Overall, it’s a positive that we are collectively learning more about highly functional autism—and Asperger’s. But I’m weary of the newly enlightened sharing with me their genius-in-the-rough anecdotes. The implication is that if I have not discovered my child’s hidden mega-talent, I’m not looking hard enough. Sometimes I am asked directly if, perhaps, I haven’t got a prodigy right under my nose—and I’ve missed it.
When this happens, I don’t go into the year of seizures, which robbed Sadie of much, or the ugly words written on Sadie’s medical charts: moderate mental retardation. I don’t tell them about the diapers or when Sadie tries to eat a piece of candy before unwrapping it. I smile and nod. That’s fascinating, or I’ll be sure to check out that documentary.
Don’t get me wrong, I don’t necessarily put much stock in labels, or putting children in a box. I believe in my girl’s brain. And I believe in neuroplasticity and the miracles that come with the mind’s ability to repair itself. Sadie does brave, brilliant, beautiful things. She sings and twirls and jumps for joy. She literally bounces out of bed to greet each new day. Larger than life and live-in-the-moment, Sadie is.
Isn’t this what we’re supposed to love about someone, their is-ness? Sadie reminds me why it’s good—very good—to be on this planet. Isn’t that enough? Isn’t this an awful lot?
Isn’t this everything?
If you get down to it, isn’t this why we procreate in the first place? For the joy of it? For the belly laughter and the free back rubs and the excuse to get ice cream cones on a Tuesday afternoon? Parents begin with the intention of unconditional love—of radical acceptance, even. They stand over cribs in the night and whisper hallelujah with each baby breath.
The dynamic quickly shifts. We start scouting early on—where do our little Einsteins excel? What are they passionate about? Will they be poets or pediatricians? Will they do us proud?
I have neurotypical children as well—I’m guilty as charged. But I refuse to view my offspring as fixer uppers. Sure, they need help and encouragement and support—with all of the above, Sadie is getting better at eye contact, asking for a cup of water, walking next to me in the grocery store instead of running ahead. Best of all, she is learning to make peace with her surroundings, no small feat.
Sadie may never write computer code—or open a can of soup on her own. Either way, my pride in her is fierce. I’ve got bragging rights not because of what she’ll do, but because of who she is. Right now.