If I had walked into my fourth-grade classroom in 1978 and told my teacher that one day virtually every school district in America would have multiple classrooms dedicated to children who could not speak, who required one-on-one aides, who wandered, who self-injured, who had seizures, who would require lifelong care, she would have assumed I was describing some dystopian science fiction novel. Yet here we are. Why are we just accepting it?
Country artist Tyler Hudson came bombing through the U.S. last week (he’s a Texan living in Australia), and one of his Instagram posts about autism did something that really doesn’t happen to me anymore after 22 years as an autism dad: it choked me up.
His post was a read-aloud excerpt from his new book, “The Missing Lyrics,” that discussed a poem written by his NT (neurotypical) daughter about his teenage son with profound autism, whose name is Lyric.
I was fine until these words:
“He’s never been to a party, never walked into a friend’s house … if I could cure him I would. Acceptance looks really nice on a T-Shirt until he bites himself so hard he bleeds. If I could cure him I would … It’s love that makes us fight for a cure, a life.”
I want to personally thank Tyler Hudson and his family for reigniting something in me that’s faded with time and with my focus on optimizing my son’s life: outrage.
I’m 57 years old, which means I have one advantage in this conversation that many people don’t: I remember the world before profound autism became commonplace.
That’s not nostalgia talking. It’s memory.
I went to elementary school in the 1970s. I played Little League. I rode my bike around the neighborhood until the streetlights came on. I went to church, summer camp, birthday parties, county fairs, airports, shopping malls and movie theaters.
I sat in packed gymnasiums and crowded cafeterias. I stood in line for the Scrambler at the fair behind a hundred kids I’d never met. I was surrounded by children everywhere I went, constantly, for my entire childhood.
Looking back, I can remember many of them. The kid who always picked his nose. The kid who couldn’t stop talking. The class clown, the bully, the shy girl, the future valedictorian. I even remember the girl in my sister’s grade with Down syndrome, because there was exactly one.
What I cannot remember — not a single time, not once, not anywhere — is a child who couldn’t speak. A child who wore a helmet because he smashed his head into concrete.
A child who shrieked uncontrollably for hours. Parents wrestling a teenage son twice their size to keep him from hurting himself. A mother scanning a parking lot in a panic because her nine-year-old bolted and can’t say his own name.
I’ve asked hundreds of people my age the same question, and I get the same answer every time, usually after a long pause and a puzzled look. They don’t remember it either. (Ask a former nurse or teacher over the age of 70, and you’ll get the same response, too.) If those children existed in our world, they were so extraordinarily rare that none of us ever encountered them.
Today, they are everywhere. And the most astonishing part isn’t that our world changed. It’s that we’ve stopped acting like it did.
Think about that for a minute. If I had walked into my fourth-grade classroom in 1978 and told my teacher that one day virtually every school district in America would have multiple classrooms dedicated to children who could not speak, who required one-on-one aides, who wandered, who self-injured, who had seizures, who would almost certainly require lifelong care, she would have assumed I was describing some dystopian science fiction novel.
She would have asked what happened. She would have wanted to know what we did about it. Any reasonable adult in 1978 would have.
Yet here we are. We built an entire infrastructure around this new reality — special education departments, behavioral therapy franchises, sensory gyms, respite care agencies, Medicaid waivers, sibling support groups, adult residential services, a whole professional class of people whose careers exist because of it.
We did it fast, and we did it without ever really pausing to say out loud what the construction of that infrastructure implies. You do not build all of that for a population that has always been there. And somewhere along the way we collectively decided to stop asking the most obvious question in the world:
How the f*&^ did this happen?
Hellbound and Down 