Can I ask you something?
What does autism mean to you?
For some, it means a life interrupted—a family landscape forever altered by the diagnosis.
It is a universal language of flapping hands, and dancing fingers, and a lot of race cars lined up in a row.
It’s meetings at school and locks on the doors to prevent wandering.
For me, autism means a lot of things.
It means a life interrupted, and a family landscape forever altered.
It is a universal language with dancing fingers and lots of jumping, but instead of race cars lined up in rows, we have piles of ice dumped in the sink.
It is medication before bed every night and a special school for special kids.
Our autism is the autism of research and science and medicine—perseverative behavior and anxiety and social rigidity and language delays.
It is beautiful and complicated and maddening and inspiring.
Often, though, when I think about autism, I think of you.
I think about the way our family burst into the hotel lobby. We were wet and disheveled because we’d spent the day at the water park.
I think about the way we all noticed you at once, standing in the middle of the room with your dog.
My son Jack was seven years old at the time. He had autism. He was very, very afraid of dogs. I mean very afraid, as in screaming-and-hitting-his-head-and-trying-to-run-into-the-street-to-avoid-one afraid.
I’m pretty sure he had never touched a dog in his life.
I think about the way he circled the room tracing his fingers along the wallpaper, the look on his face panicked, but not yet frantic. There is a very thin line, you see, between panicked and frantic. I know this line as well as I know my own heartbeat.
I think about the way you knelt down next to your gray dog, and you called for him.
Jack, we’re waiting for you.
Did I tell you his name? I must have. I don’t remember. I remember walking over to you and telling you hello, my son has autism he is very very afraid of dogs I’m not sure what he’ll do let’s see how this goes.
I don’t remember saying his name, but I was pretty stressed out and that part—the part where I talked to you—is kind of a blur because I was keeping my eyes on him to make sure he didn’t run screaming right out the front doors.
Either way, you knew it. You knew he was Jack. And softly, from your place in the middle of the room, you began to call to him.
Jack. We’re here. We’re waiting for you.
When I think about autism, I think about the way my son’s fingers began to slow. I think about how he moved away from the wall, and circled closer and closer to you and your dog, until he was close enough to reach out, and touch your hair.
He touched you first. He stroked your hair very gently, and while we all held our collective breaths—I think even the woman behind the desk was afraid to move—he reached down, and he pet your dog.
In that split second, I thought he could overcome anything.
I’ve always wondered something. How did you know? How did you know it was better to join him in his world, rather than stuff him into ours? How did you know it was better to sit, and wait?
Before I met you, I was simply surviving autism. I was going through the motions—calming tantrums and reciting social stories and researching behavior modification plans. I was walking the thin line between panicked, and frantic.
I knew I only had one chance to raise this boy, even if I wasn’t sure how to go about doing it.
Now Jack is thirteen. He still has autism. As far as I can tell, he will have it forever and ever and always. And if I had to be honest, I’m in a dark place with him lately.
Partly it’s because he is lost to me right now. He does this, you see. He waxes and wanes like the light of the moon—here one minute, gone the next.
He lives in a constant state of distress and fear, and he has very little joy in his life. He might smile once, maybe twice a week. Can you imagine what it’s like to live with someone who smiles once a week? It wears on one’s spirit, I can tell you that.
Sometimes—and I am sad and ashamed to admit this—I hear his bus pull up the driveway and I get a little pit in my stomach, because I know the rest of the afternoon will be punctuated by screams until he finally settles down to bed.
The other part has to do with the future.
I mean, I’ve always worried about the future with this boy. When he was in preschool, I worried about the transition into kindergarten. When he was struggling to shove his fat little feet into winter boots, I worried about how he’d ever learn to tie his shoes.
But now, the future is here. I mean, not his whole entire future, obviously, but there are some big milestones on the horizon that I’m pretty sure we aren’t going to make—things like a driver’s license, or a little high school romance, or a diploma.
On the nights when I can’t sleep and I really want to make myself nuts, I add more and more things to the list—keys to his first apartment, a well-earned promotion at work, a child of his own.
And then, after all the worrying and the thinking, I do what I always do when I’m in a dark place with Jack and autism. I think of you, kind stranger.
I never asked you your name.
I flip back through my memories, and I linger on the good parts—the shoe-tying and his first day of second grade when he wore a striped shirt—and my heart squeezes at the bad parts, like the time I lost my patience because he would not stop shrieking at me when I told him we couldn’t have pancakes for the fourth morning in a row.
At last, I get to you. I think about you and your dog, sitting side by side on the hotel floor, calling to my son.
Jack, we’re waiting for you.
And I remember. We will overcome what we can, and make peace with what we cannot. On the long days of shrieking and the even longer nights without sleep, this brings me more comfort than you can imagine.
All I have to do it sit, and wait.
I am starting to cross the line. You know, between panicked and frantic.
I only have one chance.
You knew he was Jack.
I don’t know your name, but I remember your dog’s name.
Jack. We’re here. I am waiting for you. I am waiting with Grace.
Jack. I am here. I am waiting for you. I am waiting, with grace.