Lately I’ve been really curious about what autism means to my 10-year old son, Jack.
I mean, I know he knows he has it. And we know he hates it. But what does it mean to him, exactly?
So, I conducted some high-level research. It went something like this:
“Jack, what does autism mean to you?”
(Ears covered, face screwed up.) “Stop TALKING about this to me.”
“But what do you think it means to have—“
“NO MORE TALKING.”
So I had to go underground with my investigation, if you will. I had to resort to strictly observing him, examining and noting his reaction in certain situations and circumstances.
And as best as I can understand, Jack thinks autism means you earn things.
Let me give you an example. Last week I had to bring Jack for his eye appointment, which is another post entirely and someday I’ll tell you all about it when I’ve fully recovered from the trauma of listening to Katy Perry for the whole ride and pupil dilation and that man’s shirt looks dirty.
The appointment was at 12:45. We needed an hour and fifteen minutes to get there on time, which meant we needed to leave by 11:30 am. This left me plenty of time to take a 9:00 Crossfit class, go home, shower, and pick Jack up from karate camp.
There was just one minor autism-related snafu: Jack remembered that the last time we went to his pediatric ophthalmologist appointment in Boston—on Tuesday, December 10th at 10:30 am and the doctor wore a black dress and we were in the exam room with light blue walls, to be exact—he stayed home from school all day. And so now he wanted to stay home from karate camp, too.
This did not parse well with my plans for working out.
But see, I have experience with this kind of thing. I know what I’m doing. I’ve read all the books and done all the research about child rearing and autism and parenting, and so I did what every good mother would do in this situation. I reached for the bribe.
“Jack, if you go to karate camp first I will buy you Snow White on DVD.”
“The Disney Special Platinum Edition or the Two-Disc Extended Edition.”
“Uh, whichever one you want,” I told him, making a mental note to myself to limit his time on Amazon.
“NO! That is EARNING! I won’t EARN A DVD. People with autism earn things.”
You see? He has somehow gotten the idea that having autism means you have to earn things. It should be fun trying to convince him to get a job someday.
When we first started talking to Jack about his autism, we tried to explain it in terms he could understand. We told him his mind works differently and sometimes his body moves because of something called self stimulation.
Naturally, he had a lot of questions. He wondered if he could die from it and why he has it and if he’ll ever get rid of it. He also asked, “Who else. Has autism.”
We kind of skipped over that one.
Then one day last spring he came off the bus and said, “I am the only one. In my class with autism.” And that afternoon, it dawned on me: he feels alone in the spectrum world.
Sure, I can tell him all the about the statistics. I could sit him down and say, “Listen, Jack, one out of eighty-eight kids are diagnosed now, so there are literally a bajillion people like you, people who picture Wednesday as orange and remember what the ophthalmologist wore six months ago.”
(And yes, bajillion is a real number. I researched it.)
“Henry. Henry has autism,” he announced one afternoon. We’d just finished picking blueberries, and I looked over at my five-year old—who was trying to see if one of the round ripe fruit would fit in his nostril—and back at Jack.
“I can see why you might think that,” I said slowly. “But he isn’t diagnosed with autism.”
“Who else. Who else has it.”
“Well, lots of people have autism, Jack.”
What do I say? Of course I know other kids who have it, adults even. But it is not my place to open that dialogue.
So instead, I try to point out autism’s more savory qualities; his memory and his kindness, his determination and his progress. But it does little to abate the obvious loneliness, the isolation of being the only one in his family, in his class, maybe in the universe diagnosed with spectrum disorder.
It’s as though I’m telling him this:
“Jack you are a brilliant unicorn amongst us ordinary horses. You are so beautiful!
We know there are tons of you out there—bajillions, even—but we don’t know how to show you. We don’t know where they all are.
Oh, and magical unicorn? We don’t really get you. We don’t understand you. We are blinded by your colorful beauty but your tantrums scare the crap out of us. In fact, maybe it would just be better if you were a plain old horse like the rest of us. Then we could figure out how to teach you fractions.”
All summer Jack’s been telling me he wants his autism to stay a secret when he starts fifth grade in the fall. He wants to keep it from the teachers and principal and students in middle school. As of yet, I have not had the heart—or the courage—to tell him they already know, that something called an IEP and paraprofessionals and a modified course load have been in the works for a while now.
I never had a concrete plan or vision when I started writing this blog. Mostly I did it because my publisher insisted I start one to promote the book.
But it’s been over two years now, and looking back I guess I also did it so I would feel less alone. From the safety of my little office I could share my heartache and make my jokes and connect through cyberspace with other people like me who are also balancing autism and parenthood and play dough and swimming lessons. And if there was a smidgen of autism awareness to the whole thing, well, that was just a bonus.
But ultimately, I have failed. I have failed because, while I feel connected to a wider community of people, the boy sitting in the room next to me—the boy with autism—feels confused and scared and ashamed.
He feels alone.
More than that, he wants to hide something that is as fundamental and essential to him as his beating heart or his thinking brain or the freckle on his right forearm. He wants to keep autism a secret.
I wish to somehow show him that there are, in fact, a bajillion more people like him in this world. That there are boys and girls and fathers and daughters who cover their ears during fireworks and squint against fluorescent lighting’s blinding glare. People who have IEP’s and aides in the classroom and battle anxiety’s fierce snake.
I want to show him that many of those same people play beautiful music and have jobs to earn money and love to go to the movies and always eat ice cream after dinner.
They are, in essence, just like him.
And so readers, I was hoping you would help me show my son he’s not alone. I was hoping I could call on my own community in order to expand Jack’s solitary world.
Would you click here to go to my Facebook page, and add the name of someone you know with autism in the comment section below this post?
Share as much or as little as you like. Share the name and age and of your son or daughter or neighbor or student or brother or maybe even yourself. Share a picture if you feel comfortable. Tell us where you live if you like, or add a little something that makes this person special.
I can’t wait to see what a bajillion looks like. I’ll even go first.