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When you have a nonverbal child, people feel the need to rewrite reality for you. They say things that, as a parent, feel offensive, even when they aren’t meant that way.

He understands everything you say to him.

This is one of the most common statements I’ve heard about my 14-year-old son with severe autism. Someone who just met him or, even worse, hasn’t met him, will look me in the eyes and assure me that he understands every single word that is said.

Even when I try to tell them that’s not true, they’ll dig their heels in.

Oh. He does. They all do.

They all do? Who is this all? If you’ve met one person with autism, you’ve met… oh whatever.

At this point, I want to tell them about what happened yesterday. Lucas, seated on his bean bag and holding a cup of water, had a bowl of Pirate’s Booty on the floor beside him. Concerned that he might topple it over, I told him to move it.

Lucas… move that bowl.

I pointed to it. Lucas? He adjusted himself and swung his foot dangerously close to it.

No. Lucas. That bowl. Move that bowl.

Again, I pointed. This time, he stood up, narrowly missing it with his Fred Flintstone feet. He stood in front of me, just inches from toppling it over.

No. No. Lucas. Look. Just give me the bowl. OK? Give me.

He knows “give me.” I did the hand motion with one hand as I pointed with the other. So he did. He gave me… his cup and continued jumping around the precariously placed snack bowl. Now it was getting annoying.

Lucas. No. The bowl. That.

Again, I pointed. This time, I handed him back the cup… and he placed it on the floor… right in the path of my point.

So naturally, seeing me point in its direction, he picked the cup back up again and handed it to me.

Color me Abbott to his Costello, but it had gone from annoying to ridiculous. I won’t bore you with the back and forth, but this went on for a while. Eventually, after getting him to give me back the cup and tossing it over my own shoulder, he finally understood what I was pointing to.

Is this a story of parental victory? No. Far from it.

Is it a story of sadness and despair? No. It’s a minor miscommunication.

Is this proof that he doesn’t “understand every single thing” I say? Yup. Big time.

This is just one of many examples I could cite for those strangers with cliché feel-gooderies. The people who die on the hill that a nonverbal boy is really psychic or, worse, pretending not to understand me, have no idea that things like this go on.

Or maybe they do and don’t care.

Either way, there is an important lesson here. It’s one that I, as Lucas’s dad, took years to fully grasp.

Admitting my nonverbal son doesn’t understand some things isn’t insulting. It’s accepting.

Pretending he understands every single word is insulting. It implies that he needs to be some sort of secret superman to be worth something.

I tell stories here a lot about our communication achievements. For a boy who I never thought would even register my presence, Lucas has come leaps and bounds. Every part of our relationship is special because, for so long, I didn’t think we’d ever have one.

Today, we do. That relationship, however, is built on familiarity and respect. It’s built on the foundation that neither of us needs to be anything in order to earn the love of the other.

Lucas loves me. He smiles when he sees me and he cheers when I come into his room in the morning. No one makes me feel more appreciated than he does.

But when he was younger, it was the exact opposite. There were times when he didn’t look up when I entered a room. He’d ignore my calls to get his attention. He didn’t understand gratitude. He didn’t make me feel like he noticed my effort, absence, or return.

And I would have loved him just the same if it stayed that way.

Again, let’s be realistic. It would have made me sad at times, but it would have been who he was. The boy in my home is the boy the universe gave me. The personality he has is equal parts nature and nurture. He may have autism and be nonverbal, but his happy demeanor, from what I can tell, is caused by feeling like he’s a main character in our family.

My boy is a main character here. He’s not overshadowed by his sister in the same way that he’s not prioritized over her. He’s a part of us and we strive to make him feel that every single day.

Would I want to know he understands everything? Not really. The idea that his misunderstandings might come from apathy or some kind of mischievous game would break my heart. It wouldn’t even make any sense and, given his personality, it wouldn’t fit with the person I know him to be.

The person I know him to be is wonderful. That includes his victories and his challenges. He doesn’t need a myth to make him meaningful. He doesn’t need your theories or your certainty. He just needs what every kid needs. That’s love, respect, and the freedom to be exactly who he is.

When My Non-Verbal Son Didn’t Seem to Care, I Still Did

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❤️‍🩹My Scar: 13 Years After My Quintuple Bypass – as discussed on this week’s Hi Pod I’m Dad podcast on Spotify, Audible, and more. #autism #hearthealth #bypass #heartattack #healing
♬ original sound – James Guttman