When Autism Awareness Isn’t Enough

My wife showed me the letter that the school sends home each year asking for a dollar in honor of Autism Awareness. As she waved it, she informed me, with a strange tone in her voice.

They want a dollar for Autism Awareness.

To which I replied, “Why are you saying it like it’s a bad thing?”

We don’t need to pay a dollar. We’re already aware of it.

I laughed out loud, but it’s totally true. When you live with someone who has autism, there’s no reason to be “aware” of it. In fact, everyone who knows you is “aware” of it. We are a walking case of Autism Awareness.

walkThat said, being aware is a very different thing from being accepting. Awareness means that people who would stare in shock at children with autism back in the 1980s now understand what they are seeing. They are aware of what it is and that people are affected by it. It means that we don’t have to explain as much and they don’t have to wonder as much. Everyone is on the same page in that we’re all aware that autism exists.

It doesn’t mean that people accept it. As a father, I accept it. I am not looking for a cure or an explanation. That’s something that many people outside of our home don’t really get. I know this because I’ve experienced the reactions that some have when I tell them about my son.

The immediate response has been varied, but they all play into a bigger question. Some of them include:

Did you get him vaccinated?

Do you and your wife get flu shots?

Did your wife breastfeed?

Did you have a natural birth?

Do you feed him organic?

It’s everything shy of our social security numbers and, if you’re one of the people who ask things like this, don’t feel bad. There’s nothing wrong with people who do. In their mind, when they hear about autism, they believe that it’s their purpose to help us get past it. It’s done from a place of caring. I recognize and appreciate that fact. What they need to know, though, is that I’m not looking to get past anything.me lucas

We asked ourselves all the questions years ago. Eventually, we come to a place of understanding. Lucas is who he is. The scare tactics and stigma that are assigned to autism plays a role in how others view it. That’s not to say that it’s the easiest situation when raising a non-verbal child on the spectrum. Yet, it’s not something that dominates my mind all day. He’s not in pain. He’s him.

To show you how far reaching this misconception is and how someone can be aware of autism while lacking the acceptance of it, I’ll share a story that, to this day, still makes me shake my head. It involves my second and final visit to a cardiologist in our town.

During our initial visit, we spoke about things like Apple Watches and iPhones. Both topics seemed near and dear to his heart (no pun intended, but even so – nailed it). However when I offhandedly mentioned that my son has autism, he turned to me and posed a question:

There’s a lot of that now. The statistics on autism is so much higher than they were when we were kids. Why do you think that is?

It was a combination of the gotcha tone in his voice and the way he looked at me that really rubbed me the wrong way. It’s the type of thing where you can’t really explain why it was offensive, but it was. To me, as someone who had a quintuple bypass four years earlier and knew how heart patients in the ’80s were treated versus today, there was an obvious reason.

I think people weren’t diagnosed with it back then. They were just pushed aside and labeled as mentally ill. They always have existed, we just know more about it now.

What he did next was the scariest part of it all. He looked off into the distance and let out a pensive, “Hmm.” It was as if he never thought about that before. I was the first person to put that idea in his head.

And he’s a doctor!

Keep in mind, this guy didn’t know the level of my son’s autism. So to him, I could have had a child anywhere on the spectrum. His question could have been a call-out for a parent who often hears, “He doesn’t seem like he has autism.” You know what, though? That made me even more annoyed. While, I’m not in that boat, it upset me to think of how parents of children on the spectrum should have to defend the reality of their lives. You can believe whatever conspiracies you want, but it’s not always a good go-to topic when the word “autism” happens to spring up.

The bottom line is that you don’t have to cure your friend’s child with autism or help them realize where it came from. We all have a natural instinct to do that. If you hear Mary’s husband has the flu, the knee-jerk reaction is to tell Mary all about what you did to get better when you had it or how you manage to avoid it now. Autism isn’t the flu. Most times when someone tells you that a family member has autism, they’re just telling you so you know more about who he or she is. That’s it. It’s to make you aware of them, which you now are.

All that’s left is to accept them.