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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?
It’s as if a meteor landed in the middle of town and, after 20 years, everyone simply started using it as a picnic table.
Now, I know exactly what the response to all of this is, because I’ve heard it a thousand times. Those children were always here. We just didn’t have the words. They were locked away in institutions, or labeled mentally retarded, or written off as schizophrenic, or hidden in back bedrooms by families too ashamed to bring them out.
The diagnostic criteria widened. Awareness improved. What looks like an epidemic is really just a bright light being switched on in a room that was always full.
Absolute and complete bullshit. I wrote an entire article about this con job here.
Here is what I’ll grant without hesitation: Awareness did improve. Definitions broadened mildly. Broadened criteria and better recognition explain the mild end of the distribution beautifully.
Of course, a socially awkward, brilliant, verbally fluent kid in 1975 went undiagnosed. Nobody was looking for him. He was just the odd one, the intense one, the one who knew everything about trains. He grew up, got a job, and figured it out at 35. That story is completely believable, and I believe it.
Now apply the same logic to the other end, the profound autism end where 40% or more of our kids reside. Tell me the mechanism by which an entire society failed to notice non-speaking teenagers who bite through their own hands. Tell me how a rural county in 1974 misplaced the children who need two adults to get them into a car.
These are not subtle presentations. These are not kids you overlook because the paperwork was wrong. A profoundly disabled child is the single most visible category of child there is — visible to teachers, to neighbors, to pediatricians, to grandparents, to the guy running the concession stand at the Little League field.
And the institutions everyone points to were emptying, not filling. Deinstitutionalization was well underway by the time I was in grade school. The population was moving out into communities — into my community — during exactly the years I’m describing. If those children were being warehoused somewhere, they should have been arriving in my world, not vanishing from it.
What troubles me even more is that we’ve become so accustomed to profound autism that the public conversation about autism increasingly revolves around people whose lives bear almost no resemblance to the families I know.
Again, this is not a criticism of anyone. If you discovered in college that you were autistic because social situations exhausted you or eye contact made you uncomfortable, I sincerely hope that insight helped you understand yourself better. I mean that. I don’t begrudge anyone clarity about their own life, and I’ve watched that clarity change people’s lives for the better.
But let’s stop pretending that experience is interchangeable with the experience of a child who cannot tell his mother that his stomach hurts. Who may spend hours each day engaging in self-injury. Who requires assistance with nearly every aspect of daily living. Whose parents quietly carry the knowledge that their greatest fear isn’t next year — it’s what happens after they’re gone.
This isn’t about ranking suffering or deciding who deserves the word “autism.” Frankly, I’ve grown tired of semantic arguments. Call my son’s condition profound autism, severe autism, catastrophic autism or invent an entirely new name for it. I honestly don’t care.
I care about clarity. Because when one word is stretched so far that it comfortably includes a successful engineer who discovered he was autistic at 35 and a non-speaking adult who will require lifelong care, that word begins to lose its usefulness.
We even invented a word to paper over the problem. Spectrum. It sounds so reasonable, so generous. And it does real work — it correctly conveys that there’s enormous variation. But a spectrum implies a smooth gradient, one continuous thing shading gently from one end to the other, and that framing quietly does something dangerous. It suggests these are differences of degree rather than differences of kind.
It lets a policy discussion, a research budget or a news segment slide from one end to the other without anyone noticing the switch. And in practice, the sliding only goes one direction.
More importantly, the people with the greatest needs begin to disappear from public view. It’s not malicious. It’s just what happens when the loudest voices belong to the people most capable of speaking for themselves.
I want to be concrete for a moment, because abstraction is how this stays comfortable.
Profound autism is a locked front door and an alarm on it. It’s a GPS tracker in a shoe.
It’s knowing the non-emergency number for your police department by heart. It’s dental work under general anesthesia. It’s a specialist three hours away with an 11-month waiting list. It’s a mother who hasn’t slept more than four consecutive hours in a decade.
It’s holding your child down so a technician can draw blood, and being the person he looks at while it happens. It’s the calculation you run every single time you consider a restaurant, a flight, a wedding, a funeral. It’s the phone call from the school. It’s the phone call from the neighbor. It’s the drywall.
And it’s the ordinary grief underneath all of it, which nobody wants to hear about because it sounds like ingratitude: that you would give anything — anything — to know what he thinks about.
I’m not telling you this so you’ll feel sorry for anyone. I’m telling you because it’s the part that gets sanded off, and the sanding is how a national emergency becomes a manageable line item.
Then there are the siblings, who almost never get mentioned at all.
They are the quietest casualties of this, and the most uncomplaining. They learn early to need less. They learn to read a room before they enter it, to notice the tension in a parent’s shoulders, to make themselves easy.
They give up birthday parties, vacations and a certain amount of parental attention that is simply not available and never will be. Many of them become extraordinary adults — thoughtful, capable, unusually kind. And many of them also spend their 20s working out what it cost.
They also inherit it. Not the diagnosis — the responsibility. Every family I know has had some version of the conversation, usually late at night, usually badly: what happens to your brother when we’re gone. There is no good way to have that conversation with a 19-year-old.
Which brings me to the thing parents in this world think about constantly and discuss almost never.
The children we’ve all seen in the grocery store are becoming adults. That’s not a projection; it’s arithmetic. The kids who started arriving in the 1990s are in their 30s now. The public imagination stops at the sweet non-speaking 8-year-old, because an 8-year-old is easy to feel something about.
Nobody has a mental image for a 34-year-old man with the same needs, six inches taller than his father, a raging libido, whiskers he can’t shave himself, whose father is 71 and whose mother has had a hip replaced.
The waiting lists for adult residential placement in some states run to years. In a few, they run to decades. Parents are aging out of the ability to lift their own sons.
And the honest answer to “what’s the plan” is, for an enormous number of families, that there isn’t one — there’s a hope that a sibling will step in, or that a spot opens, or that everyone dies in the right order.
We built the front end of this system in a hurry because children in classrooms create political urgency. We never built the back end, because adults in group homes don’t.
So why did the question disappear?
I don’t think there’s a conspiracy. I’ve never found one, and I’ve looked harder than most. I think it’s something more mundane and more difficult to fix: almost everyone’s livelihood in this field sits downstream of the diagnosis, and almost nobody’s sits upstream of it.
Think about who the professionals are. The special education teacher, the behavioral therapist, the speech pathologist, the occupational therapist, the residential provider, the advocacy organization, the researcher studying interventions and supports.
Every one of them is doing genuine, valuable, exhausting work. Every one of them is helping the children who are already here. And none of them, in the course of doing that work well, ever has to ask why there are so many. It isn’t their job. It isn’t anyone’s job.
Add to that the fact that asking the question has become socially expensive. It gets you sorted, immediately, into a camp. People hear the question and assume they already know the answer you’re driving at, and the conversation ends before it starts. So reasonable people stop asking, not because they’ve been persuaded, but because it isn’t worth the trouble.
That’s how a question dies. Not by being answered. By becoming impolite.
The irony is that the families living with profound autism aren’t asking for pity. Most of the parents I know have become remarkably resilient. They are funny, resourceful and unbelievably tough. They have to be.
What they are asking for is something much simpler: don’t stop being outraged and the scale of disability we now have in our society.
Don’t let familiarity become indifference. Don’t let an entire generation of profoundly disabled children become background noise simply because you’ve seen them before.
Every time another child loses language, every time another family begins this journey, every time another sibling quietly rearranges his or her childhood around the needs of a brother or sister, that should still strike us as extraordinary.
Not because those children are any less worthy of love, but because no society should become comfortable with an epidemic of profound disability in its youngest members.
Somewhere along the way, I think we confused acceptance with surrender. We absolutely should accept and love every child exactly as they are. Those two ideas aren’t in conflict. But acceptance should never mean abandoning the search for answers.
Loving a child with leukemia has never required pretending leukemia is simply another beautiful form of human diversity. Loving a child with profound autism shouldn’t require us to stop asking why so many children are following this path or whether future families could be spared it.
If anything, our love for the children already affected should strengthen our resolve to understand what happened — not weaken it.
And history keeps proving that the asking is worth it. Nobody knew what was harming children in houses with old paint until somebody insisted on finding out, and the answer turned out to be sitting on the windowsills.
Thousands of babies died in their sleep every year, and it was accepted as one of the tragedies of being alive, right up until people who refused to accept it noticed which way the babies were lying.
Neither of those answers came from the people managing the consequences. They came from people who were stubborn about the cause.
None of that required blaming anybody. It required funding the question, comparing populations honestly, counting carefully, and being willing to publish an answer nobody expected. That’s all. That’s the entire ask. (Of course I think I know the answer; my blog is full of articles that support my point of view.)
So I come back to the question that keeps bothering me, the question I can’t shake no matter how many conferences I attend or how many articles I read: where did our outrage go?
Not our compassion. I see compassion every day. I see teachers, therapists, parents, siblings and caregivers performing acts of extraordinary kindness, many unpaid, most of them unwitnessed. That’s not what went missing.
What seems to have vanished is the deep moral conviction that this should not simply be accepted as the new normal. The conviction that a generation of children losing the ability to speak is a thing that demands an explanation. The refusal to shrug.
History is full of moments when people looked at widespread suffering and declined to treat it as inevitable, and we remember those people specifically because everyone around them had already stopped looking.
I hope someday we’ll look back on profound autism the same way — not as something we gradually learned to live with, but as something we finally decided was too important to stop trying to understand.
My son is not a mystery I’m trying to solve. He’s my son. But he is also evidence of something, and I’d like someone to tell me what.
Thanks to Tyler Hudson and his family for rekindling my outrage.
Originally published on J.B. Handley’s How to End the Autism Epidemic Substack page.
