My Child Has Autism, But I Hope That's Not The Only Thing People Notice

by Randi Skaggs
ridvan_celik / iStock

I saw it in his eyes. It was just a flash, a fleeting moment, but I recognized it and it kicked me in the gut.

Today is “Mummies and Monsters Day” at Stella’s camp. Stella is not a fan of mummies or monsters, but being the incredibly creative person she is, she whipped up a “Cat Alien” costume that is killer. (That girl’s obsession with cats began before she could talk and has held strong for nine years.)

We arrived, a bit harried. We were running later than this chronically early anxiety-ridden-mom would have liked, thanks to the fact that Stella wouldn’t put down her book at breakfast to get dressed and sunscreened-up until we’d gotten angry at her. (The only thing she loves as much as cats are books.)

It was bright, loud, and crowded. And to top it all off, Stella’s group wasn’t in their usual spot.

I started to panic. I know this kid like the palm of my hand, and even long before her autism spectrum disorder diagnosis earlier this year, I was aware of the problems that could be caused by a cocktail of situations like these.

Stella doesn’t do well in the very bright sun, even with her sunglasses on.

Stella tends to freeze-up in large crowds.

Stella has trouble staying calm when there are loud noises.

Stella likes routine and predictability, and her group being moved was not part of the plan.

She didn’t have a tantrum, which was good. She’s been going to therapy to help her control her emotions when things don’t go according to her plans. But she looked worried. And she did that thing she does when she worries: She started go inside herself, to hunch over and make herself small.

I assured her it would be okay — that I’d help her find her group — but my heart ached for her. I looked around, desperate to find a recognizable counselor or kid. I asked Stella, “Honey, do you see anyone you know?” But she wasn’t looking at anything but the ground, and she was close to tears.

“No, Mommy! They’re not where they’re supposed to be.”

That’s when he approached. He looked confused, but kind. “Hey there! I’m Stella’s counselor. We’re meeting on the basketball court today.”

Stella shuffled past him, not looking back at me, not realizing I was trying to plant a kiss on her head. In her little Cat Alien outfit, complete with pointy ears and Ugg-style boots in the summer heat, she slouched toward the basketball court like a kid going to the guillotine.

And he looked at her like she was different. As fast as it was, as innocent as he is, I know he did. And I know he did because I used to do the same thing.

I’ve taught in public schools for almost 15 years, and I’ve worked with kids all over the spectrum, kids with various learning disabilities, kids with mental, physical, and/or emotional conditions. I pride myself on making accommodations that ensure that each child feels supported, loved, valued, and successful in school.

But when I gave birth to Stella, I had to confront the fact that — as much as I loved and worked for my kids who weren’t neurotypical — I always saw them as different. I hate to type these words, I hate the shame they bring, but the truth is, I didn’t always see these kids as quite as “real” as the rest of us.

When that little boy stood too close to me and talked too loudly, I thought, “He has autism.” When that girl clasped her hands over her ears and ran out of the bathroom at the sound of the hand dryer, I thought, “She has autism.” When that student’s IEP stated that I needed to quietly repeat directions to him and break longer assignments into short, manageable bits, I thought, “He has autism.”

Sure, I had a positive attitude about helping these children. Sure, I cared about them every bit as much as my other students. But I was so hung up on thinking of them as autistic that I forgot to remember that they were also real people — with real thoughts and real emotions.

Stella has autism. But I forget she has it a thousand times a day. When we laugh our heads off at something her little brother does. When she crawls into my lap — despite the fact that she’s obscenely tall for her age — and snuggles with me. When she plays with our neighbors’ kids in the backyard. When we sit together on the couch and read our books. When she swam into the fiercest waves on our vacation, refusing to be afraid of their strength. When she cries, worried that adorable kiwi birds will go extinct. When she paints an incredible picture or writes an astounding poem or quips a ridiculously sophisticated joke that leaves her father and me in stitches.

That counselor didn’t see any of that when he looked at Stella this morning. He saw a kid in a strange getup act antisocial and disoriented because her group was 20 feet from their usual spot.

But I wish he could. Because underneath that quirkiness is a very real kid, with a very real heart and a real but incredible brain who just handles things a little differently than some of us. She is not defined by her autism diagnosis; her diagnosis just helps us know how to speak her language and value those differences.

Maybe someday he’ll get here too. I hope he does. The view is beautiful.