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There are certain terms that, as an autism parent, I’ve learned are useful, even if they make me cringe. It’s a delicate balance using language that helps others understand, while feeling a little uneasy every time I say it.

“Severe autism” is one of those terms.

My son has pronounced delays and lifelong disabilities. His autism doesn’t show up as social awkwardness or a barrage of questions. Lucas lives through his own lens, in a world where his wants and needs often don’t align with the expectations around him.

I don’t like using the phrase, but sometimes I have to. I’ve had people comment that my positivity might not help parents of kids with “more severe” needs than mine. If you know Lucas and the laundry list of needs he has, you’d understand how absurd that is. He requires a lot of support. And sometimes, you need to say “severe autism” just to drive that point home, even if it makes your face twist a little as you say it.

Another term that stings just as much? “Grieving.”

I hate it. But I get it.

Learning that your child has autism (or any additional needs) hits like a tidal wave. You’re flooded with fear, guilt, worry, and sadness. You suddenly realize that the future you imagined is no longer guaranteed. The road ahead, once clear, becomes completely unknown.

Lucas is non-verbal and has what people would classify as severe autism. Knowing that changed my thoughts about where he might go, what he might do, and who he could become. The life I imagined shifted dramatically.

And yes — I grieved.

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Not because of who he was, but because I didn’t know who he’d be. The uncertainty was the hardest part.

Of course, everything is still possible. One day, Lucas could surprise us all. His comprehension might leap. His words might come. He could grow into roles we never expected, wheher President, CEO, or whatever. And I’d be proud.

But I’m already proud.

When he matches colors with Uno cards or follows a multi-step direction, I beam. He tries his best every time. And that’s enough. That’s more than enough.

When Lucas was born, I had a loose idea of who he’d be. Not a checklist. Not a list of goals to fix things I hadn’t achieved myself. Just the general sense of what a typical boy might grow into.

I even pushed for his middle name to be “Charming.” Seriously. The idea came to me during an episode of Sons of Anarchy. The town was named Charming, and with Prince Charming in mind, it just felt right. Not as a first name, but middle?

I pictured it all. One day, Lucas would be 21, chatting with a girl at a bar.

“Charming is my middle name,” he’d say.

He’d flash his license. She’d smile. “Ooooh. How charming.” He’d get all the ladies.

It’s silly, I know. But it’s also how parents think when they meet their child for the first time. We imagine their future using pieces of our own past.

As Lucas grew and we realized he was non-verbal, those memories made me feel naive. He might not have a license. He might not speak in a bar. Honestly, I don’t even know if he knows his middle name. It’s not something that’s come up on his communication device.

That’s a small thing. But for parents with a more traditional vision of what their child’s life might look like, accepting that things will be different can hit hard.

That’s where the grief sneaks in.

Not because of who your child is, but because of the story you had in your head. You’re not mourning your child. You’re mourning the version you imagined.

That’s what happened to me. I didn’t know what to call it then, but I know now that I was grieving. And it was messy. It came with fear, sadness, and questions I couldn’t answer. Letting go of the life I thought Lucas would live was one of the hardest things I’ve ever had to do.

But I did it and then it was done.

Today, Lucas is Lucas. With time and patience, I’ve come to really know him. And that has made all the difference. His future is still full of unknowns, but it’s no longer a source of pain. The fear I once had has faded.

Many of the same imagined outcomes that once terrified me are still possible. The difference is, they no longer shake me. Because I know my son.

I know what he enjoys. I know how he learns. I know what lights him up. I’m not waiting for him to become someone else. I’m celebrating who he is.

I don’t picture him at a bar anymore saying, “Charming is my middle name.” But when he laughs during a walk or beams with pride while sorting Uno cards, I know the truth.

He is charming.

And that’s exactly who he was always meant to be.