I used to struggle with how and when to tell people that my son was non-verbal with autism. To a parent who is new to the situation, the answer is simple, “Why say anything? What business is it of theirs?”
It sounds a bit defensive, but overall good, right? It feels like the appropriate response. After all, he’s a person. There are other things to tell them about him first anyway. That was my approach in the early days. I made a conscious effort to not mention it right off the bat. Of course, talk would quickly turn to whether he tells me about school or something and that’s when I’d share.
At that point though, it felt awkward to say it. It came across like it was left out on purpose. I could feel it. They could feel it. We had talked for two minutes about my kid and I never even mentioned that he didn’t speak. Even though the intention was to celebrate him as a person, the end result came off as if I was ashamed. It was the exact opposite of what I had been going for. I don’t do that anymore.
Today, I mention it straight away. Do I have kids? Yup. I have two. My daughter is 14. My son is eleven and he’s non-verbal with autism. End scene.
One of the reasons why broaching the subject of autism with newcomers was so hard was because of how these newcomers often act. As the father of a non-verbal boy, I’ve seen a wide range of reactions and behaviors.
By and large, most people are great. No one is ever mean or rude. I want to be clear about that. I haven’t, as yet, had someone who was genuinely looking to have an issue. If so, I could have finally had one of those Jackie Chan fight scene moments that I used to daydream about. What did you say about my boy? Hyahhh!
Sure, I’ve had some interactions that would send some into a frenzy. There was a school administrator (not my school), who I met once. I told her Lucas had autism and she seemed taken aback. When I mentioned he was non-verbal, her disapproving glare turned into a smirk or common understanding. She leanded in and said, “Ah. That’s the real one.” Seriously. She said that.
The most common thing I hear about is that kid everyone seems to know who has autism. It doesn’t even have to be one that they know. It’s one their mom knows or that they have met in passing. If you have a child with autism, you may have heard about this kid. People tell me about him all the time. He’s the sweetest boy. So lovable. Lives down the block. God bless him.
A good way to anticipate the reaction that’s coming is when the person’s tone changes. Sometimes they get quiet and somber, almost as if talking about a funeral. They say sweet things about how we’re all special or whatnot, but they deliver it like Vincent Price.
As his dad, I respond in an upbeat manner to purposely contast their dowtrodden nature. I laugh about the sweet things Lucas does or tell them a humorous tale of his many adventures. I recognize that their response isn’t meant to offend. Rather, it’s a misunderstanding about how autism affects our lives. We don’t revile it. We celebrate it. When someone takes on a sad demeanor, I make it my goal to turn their frown upside down.
It usually works because, as I said, people are good at heart. They take on this sad approach because they err too far on the side of seriousness. They worry that we, as parents, are landmines when the subject of autism comes up. You can see it in the faces of some. There’s a hanging worry that they could say the wrong thing and we could explode.
Sadly, there are many times they’d be right. Depending on the parent, timing, and what happened that day, even the most well-meaning comment could be met with furious anger. Most parents have had those days. It doesn’t matter if their kid has autism or not.
I try to remember not to be like that when I can. While I never let a strange comment go unchecked, I don’t bang my fist and throw stuff. I just acknowledge it.
For example, one of the whackiest reactions I ever had was from an old boss a few years ago. I was still at the point where I was holding off on telling people about my son being non-verbal. So, at this job, I had kept it to myself.
One day, it came up in conversation with Carol, the business owner. She did the somber sad-face thing, but didn’t seem too unique in her conversation after. There were questions about Lucas’s likes and how we communicate, but nothing major. It all seemed rather mundane, in the grand scheme of possible responses.
The next day, I was at my desk working when Carol came walking over. She sort of meandered like a kid shuffling down the block in the 1950s going “Aw Gee”. No one else was around when she stopped and began asking me about work stuff, in that same somber tone. I forget what it was. TPS Reports? PC Load Letter? Whatever. Something. I answered with a long reply as she stared off into the distance
…so, yeah. They said that would be fine if we got it tomorrow. I can get you over the spreadsheet and we’ll have that done. No problem. Is that alright?
As my sentence finished, I looked up from my chair and she was still peering into the distance. Her hand was dramatically on her chest as her eyes closed and clenched tightly for a moment. She opened them, shook her head, and through choked tears, she said:
I’m sorry. I was just thinking about your son.
There were a weird few seconds of silent, confused, eye contact. So I said:
Um…Thank you? He’s totally fine, though. I’m not, uh, sure what that’s supposed to be… So, anyway, Is that OK about getting that spreadsheet in tomorrow?
I still think about that strangeness sometimes. It pops in my head and I try to understand the thought process in that. It’s offensive, but not offensive, but incredibly offensive, but innocent. It does my head in.
At the end of the day, it’s about teaching understanding, raising awareness, and demonstrating acceptance. It’s about ultimately finding appreciation in what autism truly is. For my son, it’s a major part of what makes him so wonderful and a major reason why he’s the most unique, kind, and loving person I have ever met in my life.
No matter how many different ways people respond, my actions never change. If they know about autism, I tell them about how great my boy is. If they don’t know about autism, I tell them just how great it can be.
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