For us, learning that my son had autism felt like a major blow. I remember feeling alone, confused, and almost directionless. A part of my brain kept insisting that I should be doing something to “save the day”, but there was nothing I could do. Even worse, I hadn’t yet realized that the day didn’t need saving.
I’ve always tried to be open about the fact that my ignorance about autism fed my fears. I had no idea what a diagnosis like this meant. How would autism affect us? What did it mean? I’d ask doctors and professionals and they would all say the same things. They’d tell me it was different from person to person. They’d claim that no one had any real answers. They’d say that “anything” could happen.
None of that made sense. It felt unfair. They dropped this word in our laps and then, when asked to define it, wouldn’t. They’d just shrug and go, “Dunno. Autism. K’bye.” I went back home with my head spinning and my stomach in knots. It stayed that way for months.
My son was still young at the time and hadn’t yet grown into a “kid” just yet. He was still our baby so we knew very little about the person he would be. At that age, when someone tells you a word that gives you insight into your baby’s future, you grab onto it and it becomes all you see. It becomes their identity.
Think about it. If a doctor looked at your two-year-old and said, “He’s going to a be a baseballer”, what would you imagine? You’d fast forward in your mind to a little man with a baseball cap and catcher’s mitts for hands. You’d see him sliding into the dinner table and swinging a bat everywhere he goes. That would be his entire persona in your mind.
The same thing happened with autism. All I could imagine was that. The worst part? I didn’t know what autism was. So my child was a mish-mash creation from TV shows and movies. None of them were realistic and none of them were truly based on reality.
So, what is reality? Today, at nine years old, who is my son? Is he a boy with autism?
Yes. He is non-verbal and on the spectrum. And, yes, autism affects his personality in many ways. His communication, understanding, and daily activities are all as people might envision when they think of autism. He claps, yells, and hops around when he gets excited. He enjoys his own private time and plays with his iPad in ways that aren’t in line with how some other children might. In a nutshell, he sees the world through his own eyes.
I spend everyday learning from him and trying to understand him better. I love everything about who he is and how he approaches the world. I have never, in my entire life, been as in awe of one person as I am of him. He does things his own way and never tries to emulate anyone else. He’s the purest person I have ever known and, as his father, I am so proud to have a boy who’s so unique and steadfast in being his own person.
Autism, though, isn’t all there is to him. He didn’t grow up to only be a walking textbook image of autism. He, like every child, has his own set of qualities and many of them help him stand out. Many of them are things I never would have imagined.
Lucas is loving. If he’s watching television and I sit next to him, all I need to do is put my hand out and he will grab it with his. We’ll interlock fingers and sit together. He will come over and give me a hug for no reason or lay his head on my shoulder. When I am having a bad day, he’ll take my arm and wrap it around himself. He makes me feel wanted. He makes me feel loved.
Lucas is funny. He doesn’t joke like a standup comic, but he does things that crack me up. I’ll walk into the den and, as his TV is playing a part of Sesame Street he doesn’t like, I’ll find him sitting on the couch with the comforter completely over his head like the Charlie Brown ghost. I’ll laugh out loud and he’ll pull it down and look at me with a huge smile. He does the same thing with laundry baskets. We giggle at his bedtime storybooks and he chases his sister around the house in circles while she howls with laughter. That’s all part of who he is too.
He can be stubborn too, just like the rest of us. If Lucas wants to get up early and his security gate is locked on his room, he will start throwing toys over it. Wait long enough and the entire contents of his room will be in the hallway. Eventually you discover it and have to ask, “Oh my God. Lucas! What are you doing?”
Are all these quirks colored by autism? Sure. Are they still uniquely him and things I never would have predicted back when I was still trying to paint a caricature of who I thought he would be based on pop culture references? Absolutely. But here we are and here he is.
This is my boy. He has autism. Autism is a big part of who he is, but he’s so much more, just like everyone on and off the spectrum. It all comes together to make him who he is. Who’s that? The greatest son any dad could ask for.