Mommy, what does autism mean?

Dear Jack,

Things are better lately–just the tiniest bit better. I think it’s because your new medicine is working.

These past few weeks, you remind me of a deep-sea diver coming up for air. Sure, sometimes you still retreat back down into the deep, murky waters, but you spend more and more time on dry land with the rest of us.

You delight me every single day.

You’ve started to talk to me. I mean really talk to me—not just to demand the remote control or more time on the computer or an extra roll at dinner—but to tell me about the bus ride home or what you had for lunch in the cafeteria. You make conversation.

You ask me all the time what words mean; words most sixth grade boys probably know already, like prairie and fascinate and privilege.

I mentioned this to a very smart person with lots and lots of experience with autism spectrum disorder, and she suggested that you understand words better when you have an emotional connection to them; when they are attached to a memory, or a strong feeling.

When she said this, I thought about all of the words that seem to ignite a fire in your soul and a spark in your heart.

Campfire. Christmas. Pancakes, and recess, and rollercoasters.

And then I thought about all the words you’ve asked me about in the past week.

Capable.

Devotion.

Privilege.

Tribe.

When my sister and I were little, we used to play a game where we’d pick a word and say it over and over and over, until all the letters blended together and they were smooth and edgeless like a marble rolling around in our mouths. The meaning was gone.

Between your tantrums at school and all the doctor visits and the trips to Walgreens to change your prescriptions, autism has been a big part of our conversation these days. We talk about it all the time.

autismautismautismautism 

The other day you and I were in the car together. We were arguing about whether or not we should keep the radio on because I needed some quiet but you wanted to hear the rest of Ariana Grande’s new song and I said we could listen to music as long as it was my music and not the terrible stuff you like and this made you mad.

Then, out of nowhere, you asked me, “Mom. What does. For autism mean?”

“What does it mean? Well, basically it means your expressive language is—“

“No. For what does it. MEAN.”

I understood what you were asking, Jack-a-boo. I did. You don’t care about the clinical definition for Autism Spectrum Disorder all in capital letters.

You don’t care about the enormous blue folder that is stuffed with papers describing your muscle tone and your sensory processing issues and your speech development and your eye contact.

You want to know what autism means—what it looks like, and feels like, and tastes like. You want to be able to hold it in the palm of your hand and examine it from all sides.

So do I.

“Uh, I’m going to have to think about that a little more, buddy.”

Sure, I could have run to my computer as soon as we got home and went online to the Merriam-Webster website and typed autism into the empty box on the top of the screen.

I could have yelled across the house to you and told you to come, look, look, look, Jack, read it here, the dictionary says autism means a developmental disorder that appears by age three and that is variable in expression but is recognized and diagnosed by impairment of the ability to form normal social relationships, by impairment of the ability to communicate with others, and by stereotyped behavior patterns especially as exhibited by a preoccupation with repetitive activities of restricted focus rather than with flexible and imaginative ones.

Together, we could have learned that the first time anyone said this word was 1946—the year of Tupperware, disposable diapers, and giant tidal waves crashing upon the shores of Hawaii.

But that’s not what it means.

It means the day begins at dawn, and ends with small pills inside a vial.

It means I always make sure there are apples in the fruit bowl because apples are the one and only kind of fruit you’ll eat after school, and when I make your bed in the morning I always push your weighted blanket so it’s wedged between the wall and the mattress so it keeps your sheets in place when you stim at night because you hate it when the sheets get messed up, and I never, ever tell you what time a party ends.

(This last one I learned the hard way, when I told you our Halloween party was over around 8:00, and at exactly 7:59, you opened the front door and shouted, “Everyone. GET OUT. The party is OVER NOW.”)

It means we alter our familial landscape every day; trading travel soccer for dinner all together, an evening jam-packed with commitments for blowing bubbles on the front porch as the day settles into its purple dusk.

It means showing you your sixth grade report card, dotted all over with C’s, and you telling me, “The letter C. It is for the third letter. Of the alphabet.”

It rhymes with purism.

A lot of people say autism is just a diagnosis; a word to stamp all over forms and paperwork so they can secure important services.

Some people think you can cure it, or heal it, or change it, the way a chameleon changes colors amongst the flowers in the jungle.

I, Jack, do not believe this. I believe autism is the very essence of who you are, who you have been, and who you always will be.

It is nothing and everything all at once.

As for what it means for you, Jack, only time will tell. Will it mean college, independent living, a driver’s license, a marriage? Or an apartment nearby, with daily phone calls and a job wrangled through a family friend?

I cannot say, because autism is living inside an unfamiliar story with an unknown ending.

Maybe autism first became a real-live word in 1946, but I didn’t start speaking and hearing it and breathing it until almost sixty years later.

In 2005, autism meant a small boy in a disposable diaper running pell-mell through the living room, slowing just long enough to gaze vacantly at the television.

It meant a mother who questioned whether or not she was capable.

It meant a father’s devotion.

It meant building a tribe. 

Last Monday, you sank to the depths of the ocean once more. You hit, you bit, you screamed and cried. You threatened to run from the school.

Like angles in a triangle, I know everyone’s side of the story. I know the kids in your class were worried and concerned. I know your teachers identified your deregulation at recess and sprang into action to calm you. Yet one angle is unexplained; empty. Yours.

I want to know why. Why Jack? Tell me. Tell me your words. Talk to me.

I guess autism mostly means breathing and hoping and waiting in tandem. It means waiting for the precious words to cross your lips as we take deep gulps of air together, and try to stand upright on dry land.

And in the midst of it all, I remind myself that it is a privilege to hold this wild and colorful jungle flower in the palm of my hand.

Love,

Mom