This Isn’t About Autism

When I first started writing this blog, the expectation was that it would exclusively be about Autism. After all, I’m the father of a nearly six year old boy who is, as of today, non-verbal. How could my posts be about anything besides that?

Over the past month, I’ve tried to demonstrate that it could be about other things very easily. There are so many things that make up our days and Autism, while a major part, is not the only part. Lucas’s perceived disabilities don’t define our lives.

Even more so, they don’t define Lucas’s life. The biggest misconception that most people have about Autism is that those affected by it are islands. The imagined scenario is that they rarely interact with others and that the life of a parent to someone on the spectrum is spent wringing your hands and asking for serenity now. To those outside our bubble, our bubble can seem like a bleak place.

It’s not.

Sure there are challenges, but our lives go beyond those challenges. Our days and nights with Lucas are, as I’ve written about before, quite normal to us. He has funny moments like any other child. The only difference is that we, as his family, can sometimes feel uneasy about sharing them. That is a major reason why I started writing this.

lucasdibiaseIf my daughter says something funny, I can easily turn to someone and say, “Olivia said this funny thing.” We all listen and laugh. With Lucas, though, there’s this perception that I shouldn’t share at all. People either don’t know how to react, examine my face to see if I’m telling them out of some sort of grief for a life he’s supposedly missing out on, or don’t understand what I’m talking about at all.

For example, one of my favorite Lucas stories centers on how he doesn’t like pretzels. We all know this in our home. It’s like his thing. Yet, he still keeps trying. I was in the kitchen eating one once when he went sprinting past me a top speed. Suddenly, he stopped short and moonwalked his way back to where I was standing. We locked eyes and he double tapped his chest, which is his way of saying, “Give me.”

You want this? Are you sure?

Double tap.

I waved the pretzel in the air.

Daddy is eating this. You’re sure you want this? I thought you didn’t like pretzels. I’ll give it to you if you really want it.

Frozen stare. Double tap – stronger than before.

OK.

I handed him the pretzel, which he immediately brought to his tiny outstretched tongue. After giving it one minuscule lick, he scrunched up his face in disgust, and handed it back to me before sprinting off. The whole interaction lasted about ten seconds but I still laugh about it in my head. I’ll never forget that face. It’s the same one he made the first time I took him out to play in the snow (which he also hates). It was like he was thinking, “You know I hate pretzels! How dare you!”

lucas snowI know some people question writing about these childhood moments. They perceive them as something that should be kept to ourselves. They’re not. As a parent of a child with Autism, that’s the real tragedy. It’s not Lucas. It’s the expectation that I should hide his funny or lovable moments from the world out of fear of judgment, scorn, or an adulthood where people will know about his struggles early on.

The fact of the matter is that this is who my son is. If the day ever comes that he’s advanced to where people don’t know he has Autism at all, it would be heroic. I would show him this blog and all the pictures we’ve taken as a testament to his hard work through the years. I wouldn’t pretend that they didn’t happen. He has nothing to be ashamed of. In fact, he should be proud. If we tried to pretend these days didn’t happen, it would be like saying otherwise.

So no, this blog isn’t about special needs. It’s a blog about family, love, and the knowledge that we all come together to make up one unit. We love our kids and want others to love them too, regardless of any behaviors that deviate from the norm. If people don’t understand your child, you help them understand. If you love someone, you don’t hide them. You celebrate them. A family is made up of many people. While no member should be raised above others to define you all, no member should hidden in the shadows either.

That’s why this isn’t a blog about Autism but is a blog about Autism all at the same time. It’s about our lives and if Autism plays a role in that, then it’s included. It’s a basic fabric of who we are and we wouldn’t have it any other way.

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