In a rare display of affection last Friday night, Jack bounced next to me on the couch in our family room where I was sitting with Joe enjoying the lights on the Christmas tree. For a moment we all three sat together, listening to the muted chaos of four other people taking showers upstairs.
“At karate,” he blurted out unceremoniously. “I keep my autism secret. From my friends.”
I turned and looked at his profile while he stared straight ahead.
“Because if they know,” he continued in his monotone. “It will be a joke If they know.”
Oh my word, I thought. Does he really think his friends don’t know?
I remember holding each baby and asking myself things like, “What will I do when they want to get a tattoo?” or “What will I do if they marry someone I don’t like?” But I never once asked myself, “What will I do if my son who has autism wants to keep it a secret from his friends but I’ve already written a whole book about it?” It just didn’t come up.
We all have our dirty little secrets, don’t we? Maybe you have a tattoo you don’t show people, or you keep a bag of jelly beans in your glove compartment that you snack on when you’re alone in the car. My secret is—yeah, right! As if I would tell you. Then it wouldn’t be a secret anymore!
But whatever our secret is, there’s a good chance we’re able to keep it under wraps, or on the down low, if you will. We can hide it. Our secrets don’t scream bloody murder when a dog walks by or shout things like “The toilet in the Airport Diner bathroom is an AMERICAN STANDARD!” the way Jack’s autism does.
And Jack himself pointed out how there was an article about our family in the local paper. But some way, somehow, he thinks his friends are still in the dark. Maybe he thinks of autism as his undercover Batman to his public Bruce Wayne; his alter ego, a second self that is separate from his original personality.
What is the right answer here? Was I supposed to lean close to my son in the soft glow of the Christmas lights and whisper, “Here’s the thing, Jack-a-boo. Everyone already knows about your autism. The jig is up.”
I think I’d rather tell him there’s no Santa Claus.
The process of him finding out he’s diagnosed with a spectrum disorder has been painful enough to watch. Every day he asks something new—Will my autism last forever? Did I catch it like a germ?—and his once buoyant balloon of self-esteem is slowly leaking air with each discovery about himself.
Of course, there are some good things here that we shouldn’t overlook. As my friend Stephanie pointed out, Jack’s theory of mind is expanding to understand that other people have opinions of him; they perceive him. And he wants to be perceived in a certain, non-autistic way. His concern over being a joke amongst his friends is, in fact, progress, even if it is heartbreaking.
And he’s actually making friends–something we waited years to see. But the inflexible fabric of his mind has not stretched far enough for him to consider that these friends will–and do–like him for who he is, autism’s warts and all.
“But Jack,” I protested after a long moment of silence. “There is nothing wrong with having autism. It is nothing to be ashamed of. Your friends like you for who you are.”
“No!” he said vehemently, cinching the sash of his dark blue bathrobe tightly around his waist as he got up to leave. “It will be a joke. If they know.”
I guess the obvious question here is: do I feel guilty about writing the book and this blog? Do I regret revealing Jack to the world before he was ready? And the truth is: I do and I don’t.
I mean, it’s not as if he’s been blending in all this time. It’s pretty obvious that something is up when we all troop out into public and he jumps and flails and grunts, not to mention his incessant dialogue about license plates and death. I’m sorry to say it, but there are a million ways in which he looks different.
And to be honest, some of autism’s more visible characteristics—stimming, tantrums, rigidity, sensory processing issues—translate to the world at large as nothing more than bad behavior, overindulgence, disobedience.
So, I could let people think Jack was naughty or poorly behaved or weird or annoying, or I could explain he has autism.
I chose to explain autism.
One time in Buffalo I’d taken two-year old Jack to Walgreens to pick up some pictures. As we waited to pay, he took all the Kit Kats from the wire rack in front of the cash register and stacked them up while a woman standing behind us stared at him. He did this every single time we went into that store, and to this day the reason why is still a mystery to me. He didn’t want the Kit Kats. He never once tried to open one or taste the chocolate. But he made a beeline for the candy display as soon as we walked in, and with his chubby hands he divided them into large, uneven piles. When it was time to pick them up and leave he would scream and rage, until eventually I scooped him up and walked out the door.
But on this particular trip the woman behind me continued to gape. She was wearing a blue denim jacket and holding a box of white Number 10 envelopes. I wasn’t sure what to say, but eventually I turned around and told her, “There is something about this he needs to do. I’m not even sure what it is yet, but he’s just been diagnosed with Autism Spectrum Disorder and I think it has to do with that.” I watched as her expression relaxed. And as I bent to collect the candy bars from the floor with a red, screaming Jack tucked under one arm, she crouched down to help me with a box of envelopes tucked under hers.
From that point forward, I have lived autism right out loud every single day, from Kits Kats to license plates to the kind of toilets that are in the local diner. I have shared what I know and admitted what I don’t, I have revealed my own confusion and frustration and inside jokes and tears. Having a son diagnosed with autism has never been one of my dirty little secrets, because keeping this a secret would suggest I am ashamed of it; of him.
And that would be the cruelest joke of all.
So, no, I don’t regret writing a book or a blog about Jack’s autism. But I regret that it’s unfolded in this particular order: with first the world knowing, and then him knowing.
I regret that I’ve spent so much time trying to communicate to everyone around me how amazing and fascinating and special autism is, but I forgot to communicate the same sentiment to the boy in the blue bathrobe sitting next to me on the couch.
Maybe the answer isn’t bursting his private bubble and telling him hey, buddy, your friends all know. Instead, maybe the answer is convincing him to be proud of himself, of his spectrum disorder and his colorful autism. Convincing him that if you give people enough information, if you let them into your life and your world and your beautiful diagnosis, they will hold their envelopes in one hand and help pick up candy bars with the other. The will love you the very way you are.
That without Batman, Bruce Wayne would not be nearly as cool.
And that is no joke.
Want to learn more about the Cariello family, five kids, and autism? Be sure to check out Carrie’s book, What Color Is Monday? How Autism Changed One Family for the Better. Now available in paperback, Kindle, and Nook on Amazon.com, Barnes and Noble, and some local bookstores.