I once worked with a woman who had been diagnosed with Asperger’s the previous year. She was in her late 50s and successful. She also spoke a lot about having autism.
Despite the blog you read here, I don’t readily talk about my son’s autism with people unless it is pertinent to the story at hand. I find that it’s the type of thing that doesn’t need to be shared without reason but is needed to pre-empt a question that might require more explanation.
Does he tell you he like school?
Is he into the girls?
Does he play that Fortnight crap like my grandson?
For those wondering: Kinda, I don’t know, and no. Without questions like that, Lucas’s nonverbal autism would just be brought up in passing so as to set the pace for a story about him.
This co-worker spoke at length about how autism has affected her life in the brief time she knew about it. It explained why she liked skiing so much or why she was so inquisitive. There were lots of things that she claimed came about because of autism and she never knew until her autism diagnosis. I had listened to her talk about it a great deal.
I found myself asking so many questions. Right? That’s what we do. Autism. Right? We ask questions. Is it just the autism? I guess. Maybe. Ha ha. Right? Autism. James, your son has autism. Does he ask you lots of questions?
Years ago, I would have been put off by this question. I wouldn’t have known how to respond exactly. There was, in my mind, so much to unpack.
This year, on this day, in that conference room, it was different. At this moment, I knew how to respond.
No. He doesn’t talk at all. He is non-verbal. He’s pretty pronounced in his autism. There are life skills that we still are teaching him and communication we are working to build. He will almost definitely need some sort of specialized care for the rest of his life.
She stared at me. It wasn’t in a rude way but in a surprised way. For a woman who told us that she asked a lot of questions, she didn’t ask anything. So, I summed it up.
I hope so, though. I hope he asks me lots of questions someday.
She didn’t mention autism again.
The point of that story isn’t to shame someone for focusing on their own form of autism or even wearing it as a badge. The point of that story is that there are a world of differences in what autism means from person to person. The assumptions that people make based on television and movies don’t really fit in with how it affects our lives.
For Lucas and I, autism isn’t something he will ever have to “come out” to friends about. No one thinks he’s just being “shy” by not speaking. He’s too busy jumping, clapping, or shrieking with delight to let the decibel level ever drop that low.
When I need to explain the difference, I usually say that people know my son has autism as soon as they meet. There’s no need for Autism Awareness around us. People are aware. There’s also no need for Autism Acceptance with him. He’s here. He’s going to clap in your face whether you accept it or not.
Lucas makes eye contact. He hugs. He kisses. He shows love and affection. His toys are more tossed around the room in a state of disarray than ever lined up. He asks no questions other than requests for more food and iPad time. He doesn’t need to wear certain clothes. He will wear anything I put him in, although he struggles taking them on and off himself.
With my boy, it’s all about Autism Appreciation. There are parts of who he is and what he does that make him undeniably unique. I have known no one like him. Some have come close. But no one is Lucas.
There aren’t too many prodigy doctor shows about kids like him, though. The doctors on TV all come off as somewhat aloof and have trouble handling themselves at parties. My son could very well be a doctor one day. In all probability, he won’t. At eleven, we are still working on teaching him the concept of what letters are, much less reading them, much less using them to miraculously diagnose a mystery illness to the chagrin of his scowling, doubting chief of medicine.
We talk about the autism spectrum but fail to really see how wide that spectrum goes. For mainstream media, settling in on the middle to the less “severe” end seems to make everyone comfortable. They present the narrative that autism is a diagnosis that most, if not all, people can choose to keep to themselves.
For every parent worried that their son or daughter won’t find social acceptance when they go to college because of autism, there’s one like me who worries his son might end up in a group home. My life has gone from being a luxury to live to a necessity for my child’s survival. My own demise worries me less for myself than it does for him. It’s such a strange feeling to have as a human being, but here we are.
That’s what autism means to me. That’s the autism I write about. That’s the autism that doesn’t make it to the big screen.
Families like mine are out there, though. I know them and I watch them struggle as I do. I see the parents trying to drag their children to the car after school as they flail around for undefined reasons. I’ve watched kids suddenly break down over an unknown issue at the playground. I’ve peeled my own son off the ground as he melted into a confusing puddle of tears over me coming to pick him up from school. I would do anything to make sure he’s happy. But sometimes, in the moment, I have no idea what that could be.
Lucas is the most unique and wonderful soul I have ever known. He’s the purest person in my life and the bond we built was one that I never thought we’d have. It took time, care, and understanding on both our parts. I wouldn’t change him for the world.
That doesn’t mean there are no struggles. Parenting any child involves struggles. He’s worth it, though. I’ll take all those struggles any day of the week if it means I get to be with my favorite little guy.
This is autism and this is us. We make it work. Just do us one favor. When you’re watching a feel-good movie about the boy on the spectrum who becomes an award-winning mathematician, remember us.
My kid might not be the feel-good story you see on Lifetime TV, but he doesn’t need to be. If you met him, you’d know why almost immediately. Autism doesn’t need to make him a doctor. It just needs to make him who he is. And that person is awesome.
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