Entering The World Of My Child With Autism

It would be easy to pretend that I was always okay with my son’s autism. After all, I’m okay with it now. It’s been as much a part of his life as he’s been of mine for over ten years. I understand who he is and I love everything about him.

That said, ten years is a long time. You grow as a person, as does your relationships and understanding of others growing with you. Who I am now is different than who I was then. Heck, who I am now is different than who I was last week. It’s a constant state of evolution.

There was a time when autism was brand new to our family. In fact, there was a time when autism wasn’t even a word that was said out loud. It was an unspoken concern and a fear that had long lived in the back of my brain. Watching my son play, at that young age, could be heart-wrenching.

Every hand flap and every seemingly inappropriate reaction gave me a sense of dread. Why is he staring at the window? Why can’t he stop clapping? Why isn’t he saying a word? What is going on?

For those on the cusp of becoming special needs parents, you feel that the right parenting at the right moment will right the ship, so to speak. This must be my doing. He’s not properly playing with his toys because I’m not showing him how to do it. But wait. I have been showing him how. Maybe it’s that I’m not showing him enough. But wait, I’m actually showing him more than I showed his sister and she understood earlier than him. Maybe the problem is that I’m not showing him the right way so that he can understand. But wait, if he doesn’t understand, is that indicative of a bigger problem? Maybe it’s because he has…oh never mind. Maybe I’m not just not showing him how to do it…

This would go on and on in circles for weeks and months. I’d drown out the cycle of worry with video games or television. I was a zombie running from my own thoughts which, if we’re being honest, didn’t even seem to understand what to be afraid of.

After all, what does autism mean? I knew movies and media. I didn’t know what it meant for us though. Each hug, kiss, and moment of eye contact was a point of contention on my end for him not having autism. I’d tell myself, “People with autism don’t hug. You saw that on TV. He hugs.”

I know now what I learned shortly thereafter, that none of those checklists matter much. My son had autism and, as time would tell, was non-verbal. Once the words were said out loud, things changed. They didn’t change much, but they changed.

For a brief while after, I still felt like I could “change it back”. It was like a personal challenge to me. If I can get him to talk, we can march from doctor to doctor, laughing in their faces. I’d put him in a little top hat and we could sign a duet about how dumb the so-called professionals were.

That mentality didn’t last too long. As the weeks went by, I had to accept it and, in doing so, accept him in ways I hadn’t before. No longer was I seeing the way he interacted with the world as something that had to be fixed. I was seeing it simply as the way he interacted with the world. Period.

The new question persisted in the place of my swirling thoughts. Why? Why was he doing the things he was doing? I even remember the first moment that my thinking switched. For a story that has a lot of gradual changes, this is one of the few times I can pinpoint an exact moment.

We were seated in the living room and Lucas was playing with his toy phone on wheels. It was one of those old timey plastic telephones with googly eyes that opened and closed as it rolled along. My boy was making it move by pulling its string.

That wasn’t what made it intriguing. It was the fact that he was doing it by the easy chair. With his eyes firmly fixed in the mirror, he’d watch the reflection as he slowly led it under the ottoman and then slowly brought it back out. It was methodical and calculated. There was something he was seeing that I didn’t.

My instincts up until that day were to go over and say, “No. Look.” Then, the old me would start talking on it like a toy phone and try to get him to order imaginary pizza or some such nonsense. I would have torpedoed everything he was doing to show him how to “play right.”

I didn’t do that.

Instead, I knelt next to him and patted my own chest in one of our first ever non-verbal communications. Then I took the string from his hand and tried to copy his motions exactly.

He watched me do it through the mirror. He then looked at me with the most connected expression I had ever seen him give up until that point. It was like I had opened a door that he didn’t know anyone else could see. I think of that as the day that changed everything.

Since then, I make it a mission to “get” him. If he loves something, I want to know why. Just as I try to get him to join “my world”, I do the same with his. Because of that, we’ve slowly stopped separating them and started to simply make it “our world.” That’s all I ever wanted.