When it comes to autism, I say a lot of things.
If I’m not saying things, I’m sitting at my laptop writing them.
I say my son Jack was diagnosed when he was very small and although I was sad, I knew it was coming.
I say he hardly ever slept, and he had a hard time managing solid food, and I thought I might go crazy from all the crying.
I say I wish I could fit this square boy of mine into the round, blue world.
Have you ever had a wool sweater that was a little too small? The sleeves were short, the neck felt shrunken, and the whole thing was itchy and uncomfortable. That’s what it’s like watching my son navigate through social cues, and gestures, and peer interactions.
I say I wish I could change the world for him.
But it sounds ridiculous, like I want to buy the world a Coke and sit amongst the flowers while we sing in harmony.
I mean, it’s not wrong.
It’s just naïve.
Mostly, it’s too broad.
I want to change the world!
What, specifically, would I change?
All-access bathrooms, for starters. Maybe that’s not the right way to describe it, but what I mean is the kind of restroom where a mother or father could bring their young adult with autism so they know he’s safe and not feel weird or have people stare or shake their heads.
More adult-sized Luigi costumes. That would be helpful.
Hair clippers that are not so, I don’t know, clippery. Or perhaps a magic helmet you can stick your head into, and—voila—when you take it off, you have the perfect haircut.
For the longest time, Jack hated getting his hair cut. He’s okay with it now, but it took years for us to find the right person.
I wish everyone could speak Jack.
Oh, sure, we can keep speaking our other languages. We can talk in idioms and expressions and metaphors. We can nod and wave and shrug our shoulders and do the non-verbal stuff we all do.
My 13-year old son Charlie said this the other day.
It was a Wednesday morning around 6:45 and I was frustrated because Jack was trying to tell me something he needed but I couldn’t figure it out and he kept chanting blue blue blue.
Charlie sat at the counter, cool as the proverbial cucumber.
He started to talk to his brother in a low murmur.
He said relax, Mom. I speak Jack.
I mean, it’s not a difficult language to master.
It doesn’t have the hard consonant of German or Mandarin’s complicated symbols.
In fact, all you have to do it slow time down, and listen.
That’s right, just listen.
Take a big breath, notice the early morning sunlight spread across the floor, and listen. Ignore the clock, if you can.
When you are done listening, hear.
Hear the cadence of his voice, and the urgency of his words, and the message beneath his tone.
When you are done hearing, watch.
Watch the way his hands flutter and move.
It’s the purest form of communication you will ever experience.
The clock is going to ruin me.
I mean, what’s the worst-case scenario? Doug the bus driver will sit in our driveway for one minute longer while I try to decipher what my son means when he asks about something blue?
One thing I would change, is I would ignore time. I don’t mean stop time—I mean ignore it. When it comes to autism, let’s just throw the clock away altogether.
Wouldn’t we all be a little better off?
If I could, I would make autism so regular, and ordinary, and normal, and commonplace, that it would require no description at all.
People might see my son jumping and flapping in Dunkin’ Donuts and think, huh, he has autism. They would turn back to their newspaper and iced coffee and not think one single second more about it.
Instead, I describe it. Constantly, I do this.
Hi, I need to make an appointment for my son. He has autism.
He has autism he has autism oh don’t worry about the jumping he has autism.
Sorry he bumped into to you he has autism.
Am I supposed to explain he has autism every single time I make a phone call or we leave the house or go out for pizza or stop in for a strawberry frosted doughnut seven days a week twelve months on the calendar three hundred and sixty-five days a year?
Yes. Yes, I am.
So I do.
I explain it.
I say oh, he has autism a little under my breath while I wait for my coffee. I don’t mind. really, I don’t. Because at the end of the day, all I can do is soften his edges, and maybe open your heart.
The other day he tried Cinnamon Coke. He loved it.
He wanted his blue jacket, because it was a cold morning.
October 25, 2019 @ 2:01 pm
I love this, you describe living with autism perfectly and you explain your desires for the world around your son so plain and simple.
April 6, 2020 @ 8:57 am
I thought we experienced an autism symptom anomaly with our son having issues learning to swallow solids (he couldn’t eat true solids until he was a few days from being 18 mos – it’s also when he learned to walk). Your mention of it early in this post is the first I’ve heard this from anyone else. He had so many motor issues (and many others) in his early years but was so verbal – hence no diagnosis until he was 7. Any who, I really enjoy your blog. Maybe one day I’ll have time to read your books – we’re also a family of 5 with one girl. Our youngest is 6 and our oldest is 14.