What Does Autism Mean?
So, uh, he has autism. You know about autism, right?
I’ve heard the word before. But what does it mean?
When you asked me this, it’s as though time stood still.
What does autism mean?
Where do I begin?
It means exactly one thousand different things.
Autism is why he didn’t look at you when you were explaining how the snorkel mask worked.
It’s why he clomped around in the flippers after you suggested he take them off and carry them to the boat.
It’s why he kept saying over and over he didn’t want to put his face in the water.
Autism is alive. It is living within my son.
One day is lightness and progress and breakthroughs and rainbows.
The next day could be darkness.
What does it mean?
It means I have spent so much time trying to teach him simply how to get through the day, that I forgot the big stuff.
You know, stuff like what it means to have a mortgage, or lease a car, or keep a bank account.
It’s easy to assume that the hardest part of autism is, well, the autism—the rigidity and the obsessiveness and the way the circadian rhythm of his body resists sleep.
But it isn’t. Not for me, anyway. It’s the fear which shapes his entire existence.
Anxiety is the wolf who taps at the door, with long yellow teeth and an eerie smile.
Watching your child suffer at the hands of a nameless shadow is a pain unlike any other. It hurts me deeply.
It doesn’t hurt the way a broken leg hurts, or a really bad stomach ache. It’s more like watching a wave erode the sand, and knowing there is nothing you can do about it.
I am his mother. I want to do something about it.
What does autism mean?
It means every morning, my eyes snap open at 5:45 when I hear him stomping down the stairs.
It means I stand in the grocery store, and I look for the best avocadoes so he can make guacamole.
It means we had to take him out of public school because it wasn’t working for him and this broke his heart into exactly one thousand pieces.
He loves pancakes. He would eat them all day long with a lot of syrup.
He is brutally honest. Constantly, I remind him about things like boundaries and bubble thoughts.
A bubble thought, in case you’re wondering, is a thought you keep inside your brain even though you really, really want to shout it out loud.
Why. Is your hair BLUE.
I would love to let him have just one day to say and eat whatever he wanted.
I can’t though.
I can’t, because the next day we’d have to start all over—redrawing our lines in the sand until the waves crash ashore once again. Also, the cashier at Walgreens would probably never speak to me again.
The other day I got an e-mail from a marketing company asking what I was planning to do for Autism Awareness Month in April, and I felt a pinch of impatience.
What am I planning to do?
Well, I guess I’ll probably do the same thing I do for all the other 335 days of the year.
I’ll see the digital clock next to my bed click over to 5:46 and I’ll wish I didn’t stay up so late watching Netflix.
I’ll survey the avocadoes for the ones that are ripe, but not too ripe.
I’ll fill the medication that helps keep the wolf at bay.
Mostly, I’ll tell our story.
I’ll tell everyone who will listen that I have a boy named Jack and I just think he is the bees knees and he is hard but he is good and please just see him for who he is.
Then I will explain that he doesn’t understand phrases like the bees knees because he takes things very literally and he will ask me a hundred times if bees have knees.
Anyway, that’s what I’ll do for Autism Awareness Month. When you live alongside autism, April is pretty much like any other month.
And yet, I don’t mean to be negative. It’s good to have time dedicated such a wily diagnosis. It’s important. It means a lot to me—to us. We are lucky.
I say that a lot. I say and yet.
And yet he’s never tired no matter how early he gets up!
I also say I’m not sure.
I’m not sure why he swears so much.
I’m not sure what he’ll do after high school.
I’m not sure if he’ll ever drive.
What does autism mean?
It means sunrise awakenings, and perfect avocadoes, and heartbreak.
It is watching for the early orange dawn, no matter how dark the night.
It is who he is, and also exactly not who he is.
Will I ever. Lease a car.
I’m not sure, buddy. I’m not sure.
I’m glad you asked.
You were so good with him. I can’t believe you got him to go underwater.
March 9, 2020 @ 9:37 am
I sincerely hope that people understand autism better in the future.
I was diagnosed with autism later in life. My parents effectively disowned me over my autism, as they see high-functioning autism exactly like an intensely religious family sees homosexuality.
Because if I’m smart enough to know everything about trains (I had a train obsession when I was younger), then I’m smart enough to know how to get along with people socially . . . so this is why I choose to be autistic. If I choose to be autistic, then I deserve everything that I get.
And so on.
I’m glad that you’re more enlightened, and I’m sure that your kid will get more out of life.
March 9, 2020 @ 9:25 pm
I really have no words for the reply just left. I believe u are wonderful! My grandson is on the spectrum and I love him to the moon and back. What your folks missed out on, cannot be replaced. Love is unconditional. Jack is a wonderful boy just like u. Carrie knows, keep reading her blog. God Bless.
March 9, 2020 @ 10:38 pm