Is it Autism or Autistic?

Dear Jack,

Listen, we need to talk about something that’s been driving me crazy lately.

You really need to stop swearing. I can’t take it anymore. I am so tired of hearing you say bad words all the time.

You know, like the other night when I asked you over and over to put your folder in your backpack and you yelled, “SH%$! I forgot! I forgot I forgot I forgot.”

Or when we were all having dinner together and Daddy offered you a bite of his quesadilla and you covered your ears and screamed, “F^%$ NO!”

And the morning when you couldn’t find your glasses, and I asked you to remember where you put them last, you shouted, “D@#$! I do not for know!”

It’s starting to make me really frustrated, Jack. I’ve told you a million times it is not okay to talk this way, and yet every single time you are mad or hurt or scared or whatever, you do it anyway.

I don’t get many chances to talk to you — to have a real back-and-forth conversation. You seem the most comfortable when we’re in the car together, and you can sit next to me in the passenger seat now that you’re big enough. You always face straight ahead, but sometimes, out of nowhere, you start to open yourself up just a little bit.

The other day we were driving your brother to football practice and out of nowhere you asked me, “What makes it. For a bad word. Who made the bad words up.”

See, this is what you do, Jack. You have a way of thinking that is so basic—so uncomplicated—that it’s actually brilliant. It’s as though all this time I’ve been shining a flashlight in one corner of the room, and with one hand you reached out and shifted the beam just the tiniest bit.

I mean, who did make up the bad words? Who decided which ones are the curses? I honestly don’t know.

I guess in some ways, bad words are arbitrary, kind of like how people don’t wear white pants after Labor Day, or you always set a table with the fork on the left of the plate and the knife on the right.

Yet considered through your mind, these arbitrary rules seem pretty ridiculous.

Words can be such a funny thing. Some people would say you have autism, while others would say you are autistic. And some get mad at the others because they think autism is the right way to describe it, while others get annoyed at some because they think autistic is better.

Personally, I don’t care all that much. I don’t give it a lot of power. You are what you are, you have what you have, and it is what it is.

But other words do have power. They are ugly. They are mean and unkind, and people will judge you when you use them. Instead of hearing what you have to say, people only hear the way you say it, and your original message is lost in the vulgarity.

Language has always been hard for you, I know. I imagine words feel like a thousand iridescent lightning bugs glowing all around your face, and just as you reach out to capture one and cradle it gently in the palm of your hand, it fades to blackness.

And if people near you speak too quickly or too loudly, the lightning bugs turn into angry, swarming bees. You can’t keep up with the buzz.

Like just the other morning, when you were really mad. You were stomping through your room and yanking the clothes out of your drawer looking for “different shorts.”

“Okay, Jack, what do you mean? Different how?”

“Shorts that have. D$%^ IT! They are for SLEEVES.”

“Ah, pants! You want pants. Hey! Don’t swear!”

I am only now, Jack, beginning to understand the depths of your anxiety, and the way you spend about ninety percent of your day in flight-or-fight mode.

You’re afraid to hear a new song on the radio, or to try a different movie theater. Everything is an ordeal; everything around you feels like a threat; a change in the bus schedule, the onset of cooler weather, even two flour tortillas with melted cheese in the middle. Your body and mind are always prepared for catastrophe.

This must be exhausting. I am exhausted just watching you, with your hands poised over your ears in case there’s a loud noise, and your shoulders hunched and rigid.

It’s getting worse. Every day, it is getting worse. Every day, we lose just the tiniest bit of ground to anxiety.

I don’t know what it is like to be you, an 11-year old boy with autism. I don’t know what it’s like to live with fear churning inside of me constantly. But I know if I had to swat away a buzzy cloud of angry bees so I could search for the delicate, glowing light of language just to come up with the word pants, well, I might drop a few f-bombs myself.

Remember a few weeks ago our puppy starting peeing on the carpet, even though he’s been potty-trained for well over a year now and I know he knows better? I was so frustrated. I called a dog trainer we know to see what she thought.

She told me to relax, that Wolfie is just upset about something and he’s trying to show me in a way that will get my attention. She reminded me he’s not behaving this way to make me feel bad, but to make himself feel better.

As soon as she said that, I thought of you. I thought of your swearing.

Maybe you aren’t saying bad words to make me tired or frustrated or mad. Maybe you say them because you are trying to quiet the buzz and look for the soft, glowing light. You say them to make yourself feel better.

All this time, I thought your swear words were an act of disrespect, when in fact they are external ambassadors for the turmoil raging inside of you. It is your way of gaining a little bit of ground, and taking back what is rightfully yours; power and strength in the face of the snake.

I want to tell you something Jack. I want to tell you a word is a word is a word, the same as autism is autistic and autism again.

I hear you.

I know you.

I love you.

You do not need bad words to have power. You do not need to curse to make a sound.

Here’s what I think we should do to solve the swearing thing. I think we should come up with our own arbitrary, random swear word. Like peanut-butter fiddlesticks or shneezleboo.

They will be our very own special bad words. And whenever you are mad or hurt or scared or whatever, you can say them. And when I hear you, I will know.

I will know the snake is close.

I will know to stop talking in an angry-swarming-bee voice.

I will know to wait quietly as you look for the luminous, shimmering words that float above your head.

I will bend close, and listen, and hear you.