When it comes to my daughter, the growth is one that most people can understand. As a teenage girl who is not on the spectrum, her ways of communication are more in line with what many are comfortable with. By and large, people “get” her. They know how to deal with others who are similar to her.
My non-verbal son is a bit of a different story. Lucas’s autism isn’t the type that needs a coming-out party. You know it when you meet him. He doesn’t speak words and the sounds he does make are sometimes loud or surprising. He likes to clap as hard as possible to get an echo and he will suddenly start jumping for joy without an easily identifiable trigger. My little guy is a ball of fire, a wrecking ball, and a ray of sunshine all rolled up into a little round iPad-loving package.
That’s him and I get it. I get him. His screams don’t scare me and his jumping doesn’t throw me off my game. If he claps super-loud while I’m trying to speak, I just repeat whatever I was saying. Unless he’s getting worked into a frenzy and needs to be calmed down for his own good, I let him do the yelling. It’s the soundtrack of my life. Most times, I don’t even notice it.
There are more aspects to his autism than that, though. He can melt down for reasons that are hard to discern at times. Emotional overloads can occasionally cause incredible scenes and, when he’s exhausted from a day, he will drop to the floor and refuse to move. There can be whines that, to many listening from afar, appear to be age-inapproriate. There are outbursts that can feel like they occur out of nowhere.
Again, all of this I get. I know Lucas and, as off-putting as some of those behaviors may sound to many, they’re fine with me. There’s so much more to his personality that only I and others who adore him get to see. He’s sweet, loving, and thinks nothing of giving me a kiss for no reason. When Lucas loves you, you’re a lovable person. It’s as simple as that.
Strangers don’t know that. They see what they see. Maybe they hear a scream or a clap. Perhaps they witness a difficult meltdown. Whatever the scene, one thing remains true in every circumstance.
This is the first time they are seeing him.
All those years of building a calloused response to his loud noises have made him a part of my regular life. Me being “OK” with it all is due to love, repetition, and exposure. Without it, I’d be just as taken aback by the noises he makes. If anything, it’s unexpected by those outside our circle. I try to remember that.
In case I ever doubted the magnitude, I was given that lesson one night at around three in the morning. I woke up from a deep sleep, partially half dreaming as my eyes came open. As they did, I heard blood-curdling screams coming from the bedrooms. Ah yes. Horrifying horrifying fatherhood.
For some reason, my brain defaulted to my daughter. I could have sworn it was her, bellowing from the top of her lungs. It sounded like she was being ground up into fish chum.
With my achy breaky heart started pounding like crazy, I called out her name and leaped from my bed. As soon as I planted and my legs steadied, I stopped and realized. That wasn’t her.
It was Lucas. He wasn’t screaming because he was being eaten by a bear. He was screaming because he woke up and, well, that’s just something he does. It was his I’m-excited-and-can’t-sleep 3AM screamfest. We were having them on the regular around that time. I guess my Google Calendar dropped the ball on that one.
Then, in the perfect example of this entire post’s main theme, I climbed back into bed and drifted off to slumber with the terrifying screams that had just sent me into Rambo-mode still ringing out. I didn’t even need to count decapitated sheep.
That’s what I’m used to. That’s what I live with. And that story, right there, is why I give strangers some leeway.
Don’t get me wrong, there’s etiquette. Staring isn’t cool. Gawking, yelling, or hopping around like a stooge in a street-magic video isn’t OK either. Anything disrespectful or over-the-top for the sake of being over-the-top doesn’t fly. The response to my son can be one of surprise, not a piece of performance art. You’re not Don Knotts.
There are reasonable reactions. If his yell makes a person jump, I don’t throw a Liu Kang Bicycle Kick their way. If they peer over to see who is shouting and clapping, I don’t get offended either. Let them look. I understand. There was a time it was all new to me too.
Hopefully, Lucas will get these people, who haven’t been affected by autism the way we have, to see that the world is a big place. There are many people in the world like my son who are in it.
We don’t owe the world an autism lesson and teachable moments aren’t my responsibility. However, I have to be conscious of the fact that some people are still learning. Our mere presence could be what they need to better understand. They can look if they have to. It might be new to them today. Tomorrow, when they see another family, it won’t be so new anymore and that’ll be because of us.