Sometimes people write to me and ask questions. They ask me about anxiety and medication and weighted blankets and good ideas for sidestepping tantrums.
Although I never have any good advice to give, I love reading about people’s families and hearing their stories of autism and spectrum disorder.
I also love it because it gives me a chance to announce that I am working and must be left very, very alone, flounce into our tiny office, and shut the door. Then I fire up my laptop, and promptly log on to Facebook or Amazon.
Once I’ve ordered the skirt and downloaded the book and researched inane trivia like whether or not cats can swim (they can, they just don’t like to), I turn back to e-mail and craft my response. In order to hide how confused I am myself about autism, I start my answer with really smart-sounding words. It usually goes something like this:
As you know, autism unfolds differently for every individual.
Last Saturday, I checked e-mail and read this message:
I need help telling my son he is on the spectrum. He is 10 and has no idea. We are not sure how to proceed. I wondered if you had written anything you might direct me to, regarding telling your son. I would appreciate it so very much.
You might like this, today is my birthday, and as his gift for my “special day” my son is going to allow me to sing! He promises not to cover his ears and scream…for one day. But you know what, I think I will refrain.
Ha! So easy! I already wrote this blog post about how we told Jack he had autism. It happened on the morning of my birthday last year, and I compared it to telling my older son about how babies were made; both tricky subjects without an exact timetable.
My fingers hovered over the keyboard, ready to copy the link and send it along to Kim. Maybe I would even add a quick Happy Birthday to personalize it a little!
At some point late last summer, Jack began to connect the dots. He started to look around our family and realized he was the only one going to summer school, the only one with an aide, the only one who needed to get up from the dinner table to jump around.
I pictured long, enlightening conversations about self-stimulation and license plates and why he takes a little white pill before bed every night. Do not ask me why I pictured this, seeing as I’ve never had a long conversation with this child in my life. Few have been particularly enlightening. Mostly, they center around which day we should have pancakes and when toilet paper was invented.
Nonetheless, I was ready. I was excited to finally name the elephant in the room and hear Jack’s side of the spectrum story.
Elephant, thy name is autism.
(For no reason I can explain, I like to say that last line in a faux British accent, kind of like Sherlock Holmes. Try it.)
But on the morning after my birthday, it did not go as planned. As hard as Joe and I tried to point out the elephant’s most interesting qualities; his beautiful silky skin and unfailing memory, Jack wasn’t buying it. He could not see what we see. He did not want the elephant.
In fact, his exact words were, “I do not want it. I want it out of me.”
Did we tell him too soon? It certainly felt like the right time. I mean, you can only pretend to ignore your son for so long when he asks why he has to go back to school in July while his three brothers and one sister get to swim at the town pool. And we wanted him to hear it from us first.
Would I have changed the way we told him? I don’t think so. We were home, in a quiet space. We answered his questions honestly and carefully. We assured him he was loved, and that he was the same little boy he was before.
So why do I have a pit in my stomach when I remember our conversation, and all the subsequent exchanges with Jack about autism?
Because he hates it about himself. He is embarrassed and afraid and ashamed and confused. And this is heartbreaking.
Just last week I had this conversation with him:
“I do not want. To go. No summer school.”
“Jack, I know, but you have—
“Is it because I’m bad?’
“No, of course not—
“Is it because of autism.”
“Not exactly. It’s more complicated than that.”
“Is it because I didn’t pay attention all year when it was math.”
“Well, KIND OF!”
Jack never used to mind summer school. When he was younger I just loaded him on the small bus and waved him off, excited to enjoy a couple of hours without having to worry if he was trying to start the car or investigate the toilet.
(Now he won’t even ride the small bus. Now I have to drive him. When he started first grade he was adamant about riding the big bus with his brother, Joey. He put his six-year old foot down, if you will.)
But there is a price to this knowing, tendered in the currency of I am the only one in my family who goes to summer school and why doesn’t Charlie have an aide.
I mean, imagine someone telling you that you’ve got this condition—this diagnosis—and it’s not your fault and you’re not sick or anything and there’s nothing really wrong with you, but for your whole life people may or may not judge you and the hot days of summer will be punctuated by the hum of the classroom. You will need someone to escort you to the bathroom in middle school.
There is probably never a good time to hear you are different from us.
I am beginning now to glimpse the war that is waging within my boy; his fight to push the elephant back to his corner and get rid of something so fundamentally his. I am grateful for his spirit, but some days I just wish I knew which side of the battlefield to stand.
Shortly after we told Jack about autism, my friend Audrey and I went to hear author Daniel Smith speak about his memoir of anxiety, Monkey Mind. Standing before the audience in the tiny crowded bookstore, he explained how his mother named the anxiety for him at an early age. It made the concept of himself less limber, less flexible. From that point forward he felt tied to the label of anxious.
Sitting on the folding chair in the front of the room, it dawned on me that maybe, by naming autism, we boxed Jack in. We made him less limber.
Although we gave him the information, there is nothing he can do about it. Just knowing he has autism doesn’t mean he will at once start being flexible or stop stimming or gobble up slimy yogurt.
I imagine it’s like dropping the cutest little kitty-cat into a lake and asking him to swim across to the shore beyond. He would hate it. He would screech and flail and complain. With big kitty eyes, he would beg you to carry him to dry land, where he felt safe.
But then I thought about the defiant six-year old and his clipped speech, big bus big bus like Joey. I chuckled remembering the first time Jack tried clams casino in a little seafood restaurant outside of Portsmouth. I thought about my ten-year old walking our new puppy down the driveway.
And it occurred to me: maybe I should worry less about where to stand on the battlefield, and just get the hell out of his way.
Jack is a fighter, and he will keep on fighting to make his own way in the world, to cross between the shores of autism and not-autism. Who knows? Maybe he’ll kick his toes up and float buoyantly on his back somewhere in the middle of the great, vast lake.
Because it’s true that cats don’t like the water, but elephants are excellent swimmers.
As you know, autism unfolds differently for every individual.
All I can say is you’ll know the right time to tell your beautiful son about his diagnosis. And the right time will also feel wrong and then right again and wrong once more.
Okay, basically, there is no right time.
Some days it may feel like there are three of you standing in the room together: you, your son, and a giant elephant lurking in the corner. At times, you may all stagger under the tremendous weight of I am different but I want to be the same, show me how to be the same.
This will hurt.
In fact, your heart will feel like it is breaking into ninety million pieces and it will be hard to breathe.
But ultimately, autism is his to own. He alone will bring it out into the light, examine it and unravel it, make sense of it and peace with it. Do not underestimate his strength.
In the meantime, I only have one piece of advice. Sing.
Sing and screech and yowl like a cat. It’s the best way to coax the quiet elephant into the water for a long, cool swim.
P.S. Happy Birthday!