My son’s smile means everything.
Lucas is 14, nonverbal and full of joy. He doesn’t use words to express his happiness. It’s written all over his face. His smile is part of his language, and when I see it, I know that he and I are doing something right.
We’ve learned to communicate in our own way. Gestures. Silent routines. Sometimes, it’s just instinct. Like a friend across the room during a boring business meeting, I can tell what he’s thinking simply by looking in his direction. It’s a connection I used to think was impossible. Today, it’s part of life.
There’s still so much I wonder about my boy. What will Lucas’ future look like? Will I be able to prepare him for the world? What happens when I’m no longer here?
But what I don’t ask — and what I stopped asking long ago ― is why.
Why does my son have autism? Why didn’t he hit the same milestones? Why is he different? The truth is, outside of those raw first weeks after his diagnosis, I haven’t cared about the “why” at all.
It’s been a long journey, and so much has changed for us in that time. In those early days, I was terrified — not of my son but of the world and what it might take from him. I imagined stares from strangers, isolation and an endless fight to get people to see the value he offered. I feared a life full of explanations and misunderstandings. And honestly, some of that came true.
But so did things like peace, love and self-realization. All the things I thought might disappear with the diagnosis ended up defining our story in a different, more beautiful way.
In the beginning, I thought I had done something wrong. Had I talked to him too much? Or too little? Maybe I overdid it with the baby-talk and hadn’t articulated clearly. I beat myself up for it but secretly hoped that maybe I had been the cause of his delays. After all, if they were my fault, I thought, then I could also be the solution.
I threw myself into trying to teach him everything and anything I could by repeating words, using visual cues and overexplaining everything in a desperate effort to “unlock” something.
One of the earliest struggles was mealtime. He’d get overwhelmed if dinner didn’t appear instantly. I’d enunciate “It has to cook,” louder and slower, like a frustrated tourist. I’d bring him to the oven and flick the light on to show that dinner was in there. I was determined to make him understand.
Years later, something clicked for us. Lucas still doesn’t speak, but now he watches me put the pizza in the oven, and when I say, “I’ll call you when it’s ready,” he heads off to wait. Does he understand the act of cooking? I don’t know. Does he understand the passing of time? Minutes? Hours? I have no idea. But he doesn’t have to, because he trusts me.
He understands that I take care of him. He can run off and know he’ll be fed because that’s what his dad does. He knows that I love him, and I know he loves me.
My son might not say “I love you” with words. But I hear it when he reaches for my hand. I feel it when he leans his head on my shoulder after a long day. It’s in the way he seeks me out or smiles at me from across the room. His actions speak louder than any words ever could. Because of him, I’ve learned to listen differently.
And I didn’t need to “fix” him or force words to get there. He learned, and so did I. It wasn’t language that brought us closer. Love and time did.
That’s why it’s so jarring when someone drops into the comments section below a post I’ve written about my irreplaceable boy with the latest miracle cure. They link me to a crystal, a diet, a treatment or a theory.
“You should look into this. It worked for my cousin’s neighbor.”
I know they mean well, but the message they’re sending doesn’t line up with Lucas’ place in our family. Their suggestion is that something must be wrong. Something needs to be fixed.
But the only people who think my son needs fixing are the ones who don’t know him.
That’s why the recent comments by Health Secretary Robert F. Kennedy Jr. were so alarming. Earlier this month, he claimed that “by September we will know what has caused the autism epidemic” and said he plans to eliminate those environmental “exposures.”
He’s launched a massive federal study, reportedly headed by a well-known vaccine skeptic, to search for a cause, despite decades of research showing there is no singular source to blame. But the problem isn’t just flawed science. It’s the mindset behind it — that autism is something dangerous that must be tracked down and erased.
They’re starting from a place of condemnation, with little real awareness of the people they’re actually talking about.
When Lucas rewatches the same show or flaps his hands in joy, people assume I must be searching for a way to stop it. My son’s joy isn’t considered “typical,” but that problem is theirs, not his.
Every April, we ask people to be aware of autism. In my opinion, the monthlong campaign should be about autism appreciation.
And with public figures talking again about causes and cures by blaming vaccines, hinting at eradication and calling autism an “epidemic,” it’s hard to stay quiet. Because when they talk about eliminating autism, they’re talking about eliminating people like my son.
Lucas has no ego. He isn’t mean or cruel. He will happily greet a stranger the same way he would a friend. He loves with all his heart and his emotions burn brighter than anyone else you’ll ever know. My son lives his life the way we all should. He lives his life with a sense of honesty. There’s no one like my son.
He’s not a problem. He’s not a tragedy. He’s my child. And I wouldn’t change him for anything.
And if you knew him like I do, you wouldn’t want to change him either.
James Guttman is a writer, parent, and the voice behind HiBlogImDad.com, where he shares honest and heartfelt stories about raising his non-verbal son with autism. His upcoming book, “Hi World, I’m Dad: How Fathers Can Journey From Autism Awareness to Acceptance to Appreciation,” is available for preorder now and will be released on June 19. He also hosts the podcast HiPodImDad.com.
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