It’s been nearly eight years since my son, Norrin, was diagnosed with autism. And when people ask me where he falls on the spectrum, I describe him as being somewhere in the middle. While he can speak clearly and tell me when he’s hungry, tired or happy, he doesn’t always have the language to express why he’s feeling a certain way. At the end of the day, raising a kid with autism has given me a front-row seat to its many challenges; but it doesn’t automatically give me insight into what it’s actually like to have autism. I am still, in many ways, an outsider to it.
There are things Norrin does that baffle me. There are things that I take for granted; moments when I forget how difficult a simple outing to a restaurant or shopping mall can be for a kid like mine.
Just take the other day, for example, when we left the house to run errands. We hurried out the door and accidentally left Norrin’s noise-canceling headphones behind. Only we didn’t realize until we were already in the car and a few blocks away. Usually Norrin is good about remembering his headphones, but autism or not, he’s still a 10-year-old kid. It happens — he forgets, we forget; we’re human. Sometimes we go back and get them, sometimes we don’t. Knowing we had a busy afternoon planned that day, my husband suggested we go back and get them. But in the end, I said no. “He’ll just have to make do without them,” I told my husband.
I wanted it to be a teachable moment. I wanted Norrin to be able to adjust to his environment.
And so, we drove on; and eventually ended up at an outdoor shopping center, where we shopped and walked around for a bit. Norrin did OK, though he was fidgeted and flapped his hands more than usual. He pulled his hood way down, trying to cover his eyes or squeezed his eyes shut. Every few minutes or so, he’d ask for his headphones and I had to remind him we forgot them at home. “We forgot the headphones at home,” he’d repeat to me.
After our errands, we had lunch at one of our favorite restaurants. Norrin sat at the table with one hand over his ear, and his other ear pressed against my shoulder — to block out the noise. When I tried to get him to uncover his ears, he said it was “too loud.”
There was no meltdown, no tears or screaming. Norrin was adjusting to the chaos around him, in the best way he could. I put my arm around his shoulder and pulled him a little closer. Then I asked the waiter for the bill and to pack up our food. We hadn’t finished eating, but I knew it was time to go. Norrin had enough.
This was our day. And honestly, I didn’t think much of it — until hours later, when I found myself watching a viral video that was making the rounds. The video, created by the UK’s National Autistic Society, shows an ordinary day from the perspective of a kid with autism at a shopping mall with his mother. A boy just like mine; a mother just like me.
In it, the boy walks through the mall with his mother, and reacts to the sounds around him, which seem much louder and more startling than they might to you or me. Loose change falls from someone’s hands and onto the floor, smashing loudly against the marble; a man hands out a bunch of balloons that seem to make odd, angry noises as they rub together. Every step seems overwhelming; it’s a sensory overload.
Finally, at the video’s end, it all gets to be too much. The boy screams out in the mall, and covers his ears as his mother hunches down to soothe him and other shoppers turn to look. “I’m not naughty, I’m autistic,” the boy explains in a voice-over at the end. “And I just get too much information.”
All at once, it made me sad. This is what Norrin feels when he out and about, I thought to myself, as my mind replayed all of the many times we rode the subway, swung by the mall, or headed to an amusement park.
There are things I know that Norrin struggles with — things that we work on every single day. Tying his shoes; appropriate social interactions; self-care skills and grade-level academic work. These things are obvious. These things I can understand.
But the struggle of day-to-day life — of walking out the door into the world and being completely overwhelmed by every sight, sound, and smell? That’s a little bit harder to comprehend. I leave our apartment every day, I take the subway to and from work, and I manage to get through it all without having to block out the noise around me. Yes, it may be distracting and even aggravating at times — but I can still function.
But this video; it made me realize that Norrin’s headphones are not an option — they’re a necessity. It’s not about him learning to adjust without them. The headphones are the thing that allow him to function. I don’t have to understand the ins and outs of why. I don’t even need to know how it physically feels for Norrin to navigate a public place. I just need to be sensitive to his needs, even when it looks like he’s doing okay. And the next time we leave the apartment without his headphones, I’ll go back for them.
I will probably never be able to fully understand what it’s like for Norrin to live with autism; but I will always be willing to try. And now, unlike before, I have a greater glimpse into his world than ever before.