The Person I’m With Has Autism

“Hey Carrie, it’s me, Sandy. Listen, I had an idea for you—”

Sandy is a dog trainer.We started to work with her after we got our puppy,Wolfie, because we have no idea what we’re doing.

“Oh, I’m so glad you called! I’m kind of worried he doesn’t like his food. He isn’t eating it as fast. And when he chews it he kind of makes a funny face, you know? Like he—”

“I’m not talking about Wolfie,” she cut in impatiently. “I’m reading your book—”

“You are? That’s so nice! Did you get to the part about dogs?  I know, it’s so sad because Wolfie isn’t in it. But we didn’t have him yet!  Maybe I should write a new book, just about him. I could call it The Wolfman. Or Wolferoni, that’s kind of his nick—”

“No, it’s not about dogs,” she said brusquely. “I’m reading the part where you say you wish you had some kind of sign to tell people about Jack and his autism.”

She went on to explain that she took care of her mother, who had Alzheimer’s, and how the Alzheimer’s Association issued family members little business cards they could give to people at the hair salon or the grocery store or the library.

“They said, ‘The person I’m with has Alzheimer’s. Please be patient.’ This way, my mother didn’t have to feel self-conscious but I could help people understand her a little better.”

“Huh. That is a good idea,” I said thoughtfully. I went back to chatting about puppy food and house training, and although I didn’t forget the business card idea altogether, I didn’t think about it too much more. Until we went on vacation.

Because we hate ourselves, this June Joe and I decided to take the kids to Texas.

(For those of you who have never been, it’s hot in Texas. It’s really hot in June. In fact, the Texas heat in June makes the Bikram yoga hot room feel like you need a sweater. It’s death-hot. I-can’t-breathe-hot. Someone-turn-off-the-sun-hot.

I hear it’s even hotter in July. August is too hot to talk about.)

But while we may hate ourselves, we love Joe’s sister, Elaine. And Elaine lives in Texas. So for the second year in a row, we packed up five children and four suitcases and headed west.

Excited beyond measure, Jack filled his carry-on with his usual favorites; his stuffed bunny and moose-shaped pillow, nasal spray and Chapstick. Like always, he brought his rigidness and bossiness and how many more minutes-ness.

He also brought the deepest, most awful sounding cough you’ve ever heard in your life. It sounds like a cross between croup and a chainsaw. And he is the worst cougher you’ve ever seen.

I know, I know, kids cough, right? They get colds and they cough and sometimes—gasp—they don’t even cover their mouths! But Jack takes coughing to a whole new level. Something to do with that whole controlling your body thing. He jumps and flails and throws his head back. He amplifies.

Three times, I brought him to the doctor’s for antibiotics and inhaler things and new recommendations for cough medicine. Three times, the doctor promised me that it wasn’t whooping cough or bronchitis or the plague, and that we were safe to travel.

So, last Monday morning at 4:30 am, the seven of us were off.

Fast-forward two hours later: all of us seated at a table in Johnny Rockets in Logan Airport, kicking off our trip with greasy hash browns and sticky pancakes. Cue tremendous coughing fit. A woman and her son, who had nodded and smiled pleasantly at us just moments before, picked up their trays and moved three tables away.

“JACK!  Cover your mouth! And sit down!”

“I can’t. I can’t. I don’t know what my body is doing.”

A few minutes later we were jostling our way to the gate, Jack and a security man collided. “HEY!” Jack screamed at him.  “Watch where you are GOING!  That was RUDE.”

“JACK!” I turned to the man. “So sorry. He didn’t mean that!  Sorry. He’s, um, well, he gets overwhelmed.”

As we boarded the plane I thought about Sandy’s suggestion for business cards. Settling into my seat, I considered a few ideas and giggled to myself:

Someone I’m with has autism. Guess who.

Someone I’m with has autism. Now hand me a drink.

Someone I’m with has autism.  Please do not mention anything about toilets or spiders or Wyoming.

Next to me, Jack boomed, “What are you LAUGHING ABOUT. Have you seen what kind of toilets they have on this AIRPLANE?”

When Jack was just a little guy, I could smile and announce, “He’s on the autism spectrum,” as loudly as I wanted. He had no idea. But now he’s ten, and he knows. And understandably, he doesn’t like the label.

More than just the label, it’s autism in general he resists. He hates it. Almost every day now he mentions getting rid of his autism, making it go away. He doesn’t want to be different.

So, there’s no announcing it anymore. Now I kind of shift my head to one side and mumble something like, “He’s, um, you know.” Sometimes, for no reason I can explain, I clear my throat.

But they don’t know. That’s the thing. They look over at him and glance back at me and overall, there’s a lot of confusion.

For the rest of our trip, I thought about how maybe business cards really are the answer. It would save everyone a lot of awkwardness, like when  Jack asked the server at Friendly’s if her mother was still alive or wondered out loud in the middle of SeaWorld, “What does PIT HAIR FEEL LIKE?” He was standing next to a man with no shirt on at the time.

It could promote tolerance and acceptance. It could make the world love autism. Most of all, it could save my son from the embarrassment of an announcement.

Oh!  I almost forgot to tell you what else Jack brought on our Texan vacation. Why, he brought his latest fixation. And what is this latest fixation, you ask? Black widow spiders or license plates or birthdays or toilets? Nope. Nothing as cute and endearing as all that.

Right now, he’s fascinated with—wait for it—Nazi Germany.

At the airport in Austin, Jack and I stopped for some water and gum while we waited for our plane to board. Just as I handed my credit card over to the young 20-something behind the kiosk, he blurted out, “Did you KNOW. Annie Frank died when she was fifteen.” The guy blinked at him and looked back at me. I cleared my throat.

“JACK!” I whispered-shouted when we walked away. “Don’t ask people about that if we don’t know them. And it’s Anne Frank, not Annie.”

“It has an ‘E’,” he said stubbornly. “So it’s Ann-ee. The concentration camps. Did they have campfires?”

Suddenly I felt very tired. As we stepped on the moving concourse, I closed my eyes against the naiveté of it all; the absurdity of a boy who has the emotional maturity of maybe a six-year old trying to grasp the horror of a concentration camp. The absurdities of pit hair and coughing and even autism.

Standing next to Jack, I realized it’s not the lingering gazes or the small stares or even the occasional child’s pointed finger that I mind. I don’t. It’s that people don’t know him.

I think more than today’s autism buzzwords of tolerance and acceptance and embrace what is different and blah blah blah, I just want the world to know him.

Trust me, I realize this is a lot to ask, especially since I myself often fail to see beneath autism’s tough exterior to the little boy hiding underneath. It’s certainly a lot to ask of a 2 x 3 piece of cardstock.

But I want people–I want you–to know that he is so very funny. And interesting. And smart. And rude and abrupt and curious and innocent and scared. He is trying his best to master a difficult world, to understand manners and how to cover his mouth and use polite words and keep his body still. But I don’t know how to fit all of that on a business card.

 Someone I’m with has autism. Please give him a chance and try not to judge him. This will be hard.

Someone I’m with has autism. He might ask you a lot of weird questions but he just wants to know more about you.

Someone I’m with has autism. He is doing the best he can.

On the flight home Joe sat next to Jack. I relaxed back in my seat, glad for the four-hour respite from the hacking cough and the stimming and Annie Frank. About halfway to New Hampshire, Joe reached over and tapped my shoulder. I looked up from my Nook, startled.

“Jack just told me he prays to God every night. He prays he’ll take his autism away.”

I cleared my throat. And as I turned back around, I thought of the perfect business card.

 

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One thought on “The Person I’m With Has Autism

  1. wow, I laughed out loud a few times. Jack gives you some great stories to pass on.

    I did tear up when he told his dad he wishes god would take his autism away. I want people to understand that there’s nothing wrong with having autism or any other sort of intellectual disability so that the kids who have them can feel included. It makes me so sad and angry!

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