We’re all aware of autism; now let’s do something radical

Awareness months have done their job, but a different approach is needed to make a difference for autistic kids and their families.

Associated Press

“Do you want to make a donation?”

“Excuse me?” I look up from my wallet, making sure that my son is still next to me. He is, but he seems agitated. We need to go.

The teenage cashier at the sporting goods store repeats the lines of his script: “April is Autism Awareness Month. Would you like to make a donation to Autism Speaks?”

“No . . . just the shinguards please. I’m in a hurry.”

I doubt the young man at the register realizes I’m in a hurry because I’m here with my severely autistic son, Finn, the tall 8-year-old who in the brief time we’ve been here ran full speed in the aisles, buried his face in the racks of workout gear, then tried to knock the soccer balls out of their bins. I think about saying something to the cashier, like “No donation — Sorry! Please just let me get my autistic son out of here before he tears apart your store!” I’m sure that would boost his awareness. But it would be rude, and beside the point.

Autism Awareness Month, now in its 13th year, does raise awareness, or at least boosts Web searches on autism. But awareness is different than recognition. Awareness doesn’t increase the number of places where parents like me can take our behaviorally challenged children, for example. My son can’t sit still in a movie theater for the length of a movie. He gets overstimulated in children’s museums. In most restaurants, his yelps and difficulty staying seated draw sharp looks. People want to eat in peace. I get that, but I don’t want to be a prisoner in my home either. And I can only spend so much time at the laundromat, where Finn can generally bang on the machines and push around the ancient carts without disturbing anyone.

Generations ago, you rarely saw people with severe developmental disabilities in public spaces. A child like Finn would likely have been separated from our family not long after birth and placed in a state-run institution, like the Walter E. Fernald Developmental Center, called the Massachusetts School for Idiotic and Feeble-Minded Children when it opened in the mid-1800s. I’m glad that didn’t happen, and not just because publicly run schools like the Fernald were closed after years of scandal and sometimes outright abuse. Having Finn in our lives has given us so many inexpressibly tender moments. When a dog passes us at Fresh Pond, and Finn presses his body into mine for comfort, or when he absently threads his fingers through mine as we walk down the street — I feel a surge of affection. “How much do I love you?” I ask. He lifts his hands in the air (at 8, he’s still nonverbal). “SO much!” I say. Sometimes, Finn is right there with me.

But then he isn’t. I still find it hard to read his moods and follow his lead, even when doing something as basic as running an errand. Awareness of autism doesn’t ease this challenge; I’m hyperaware, and yet still don’t know how to manage his tantrums. Our society has difficulty accommodating severely disabled children like mine, no longer toddlers, yet unable to feed or dress themselves, or even use the toilet. There are some private residential facilities, but they cost more than $200,000 a year. Even highly functional kids with autism don’t easily fit into society.

There are things people can do to make daily life better for children across the autism spectrum. If you see a mom struggling to contain an agitated child in the middle of a street or store, instead of staring mutely or averting your eyes, ask her, “Are you OK? Can I help?” Or even, “I think you’re doing a great job.” (I can no longer hide that my son behaves strangely for a boy his age. To be fully seen and still accepted is the greatest favor I’ve received from strangers.)

Or consider practicing radical hospitality. What’s radical hospitality? If your child has a classmate on the high-functioning end of the spectrum, invite that classmate to your child’s next birthday party. If you have friends or relatives with children on the spectrum, ask them how they’re doing, and then really listen to their response. Drop off a bottle of wine on their back porch if you know they’ve had a particularly rough week. Give to an organization that provides service dogs for autistic children, or volunteer as an autism buddy. If you run a store that’s big enough, create a space for a ball pit where autistic kids can play. You can, of course, wear a puzzle-shaped pin to show support, but that by itself is just paying lip service to the concept of “autism awareness.” Let’s all take the radical step of moving from awareness to actually helping families who are living with autism every day.