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Today is Autism Awareness Day. Can I tell you a story about being an autism dad?

It happened four years ago. My son Jack, who is autistic and doesn’t speak, was twelve at the time, and his neurotypical brothers were nine and six. The three of them share a bedroom, but Jack was going through a rough patch. He was having huge meltdowns every night. The panicked screaming would go on for hours. We tried everything, but we couldn’t figure out what to do. After weeks of this, the whole family was worn down.

There was only one thing that would ever make the screaming stop: we had to recite a list of his favorite movies in the order in which they appeared on his iTunes library. It went something like this.

“Shhh… One, Good Dinosaur. Two, Dragon One. Three, Dragon Two. Four, Inside Out,” etc. I think it went up to fourteen. My oldest daughter had discovered this remedy one night, and it worked like pure magic. But after thousands recitations (you think I’m exaggerating, don’t you…), the cure had become the new addiction. He became dependent on the list. It would calm him for ten seconds, and then he would start in again with the crying.

What was wrong? We didn’t know. He couldn’t tell us. That’s the hardest part of parenting a child with severe communication difficulties. When he’s hurting like that, or when he’s so scared his teeth literally chatter, we have no idea how to make it better.

So there we were… lying next to him in the wee hours, repeating the list again and again, hoping that this time, when we got to fourteen, we’d get twenty seconds of quiet. And maybe twenty-five seconds next time.

But remember, he was sharing a room with his brothers, too. They were going to school every morning with messy hair and bloodshot eyes. They were more wrung out than we were.

One night, when it was becoming clear that this spell wasn’t going to break anytime soon, we drug Sam and Nathan’s bedding across the house to their sister’s room. Sam, the nine year old, was furious. And that’s a big deal, because Sam never gets mad. He might be the most compliant, good-natured kid I’ve ever met.

“Buddy, you are so tired,” I told him. “You have to sleep.”

His defiance came in a quivering voice, “What if Jack needs me?”

You see, friend, in the wee hours, Sam had become the keeper of the list. The whisperer of peace: “One, Good Dinosaur… Two, Dragon One… Three, Dragon Two…” How many hours he did this, I’ll never know.

So I spread out his blanket on the floor, said goodnight, and closed his sister’s door.

A few minutes later, it happened: the thing we’ll never forget.

My daughter’s door opened, and there was Sam, standing with his pillow under his arm, and his blanket on his shoulder. He was glaring at me with huge tears in his eyes. His chin trembled violently. Then, he proceeded to march all the way across the room, right in front of the television. His eyes never left mine until until he rounded the corner and disappeared back into his bedroom, where his big brother was still crying.

* * *

Autism means many things to many families. To ours, it’s meant banding together in surprising ways. It’s meant digging deep to find connection. It’s meant figuring out together what will make Jack laugh, or what will help him relax and go to sleep. Autism means sometimes dragging your bedding across the house.

Together, we have learned how to speak a new language, not based on grammar and syntax, but on grins and silly dance moves.

Our story is at once heavy and beautiful. It might always be that way, and I’m okay with that. I used to lament Jack’s condition. And I’ll be honest, some days, I still struggle.

But today, I look at my lanky, whiskered sixteen year old who can’t speak but occasionally sends a text message, and I see all the beauty he has brought out of us. I see all the joy he pours back in. He’s a beautiful boy, And I cannot tell you how grateful I am for him. I’m grateful for his brothers and sisters, too, each of whom understands empathy at a far deeper level than I ever had to as a kid.

* * *

I took a long walk with Sam the next morning. We didn’t talk much about rules or punishments. There was no need for any of that. Mostly, we talked about responsibility and rest. Because it doesn’t matter who we’re trying to love, or what diagnosis they might have, love requires effort. And if we’re loving for the long haul, we have to find refreshment for our souls, even as we pursue the same thing for our siblings.

In the end, that’s what autism awareness is really about for us: learning what it means to love our brothers, even as we learn to love ourselves.

“Sam,” I told him that morning, “I’ve never been so proud of your disobedience.”

It’s still true.

______________________

Photo from last summer at the Oregon coast. My shaggy boys from left to right: Nathan (now 10), Sam (13), and Jack (16). I love these young men.

It’s a drizzly morning, and Jack is taking a walk with me. He had a rough night, which means Sara and I had a rough night, and now we’re trying to shake it off by meandering the streets of our wet little town before it wakes. A pair of exercising moms offer us a good morning, and I wonder if they can tell my boy is different. There is much about him that sticks out. Some of his uniqueness he owes to the autism spectrum. But some of the other stuff—the melancholy aimlessness on this morning walk, or the way he squints up at the rain—he gets from me.

It’s been two months since the world shut down, and we’re both tired. Jack’s tired of Zoom therapies and pixelated faces, and I’m about done with the games the world is playing—the tug-o-war over numbers and and courses of action. I’m tired of accusations and return accusations; of conspiracies and counter-conspiracies; of punches thrown and prophecies proclaimed and the near total absence of humility. If the world had broken in an off year, there might have been more good-faith arguments about how best to proceed. But since it’s an election year, every course of action is said to be suspect.

All of it is soaking my shoes, so I walk slowly.

How are we supposed to proceed? To shelter or to open? To comply or to defy? To mask up or to go plain faced and unafraid? The defiant ones don’t want to admit it, but they’re just as scared as the rest of us. Everyone is hyperventilating. We are afraid of COVID or of collapse. Choose ye this day whom ye will fear: the bodybags or the breadlines.

And I don’t claim to be above it. I think both threats are real. But you know what I’m most afraid of? Not of the coronavirus or of a great depression or that we are so plainly being ripped apart by mutual suspicion and resentment. No, my biggest fear is that we don’t care we’re being ripped apart. I fear that we’re okay with it. That we’re ready to rush in and pick up our side of the rope; to drag our neighbors into muddy agendas we barely understand.

The beloved disciple said that perfect love casts out fear. I don’t doubt him, but I want to ask him, “When? How long does it take for perfect love to work its magic?” Because it’s been two months, and we’re barely shuffling along, wet-socked and world weary, accumulating new resentments by the hour. Perhaps we need more time. Or a better sort of love.

We pass the boy’s old elementary school, and I can see he’s sad. I’m sad, too. I tell God so. I squint up at the rain and wonder whether people know it when they see me? Can they sense my heaviness? Can they tell something isn’t quite right?

Jack crosses the street with me, then changes his mind. He stops on the sidewalk–frozen in indecision, until I offer him my elbow. Then, he does something he’s done ten thousand times before: he slides his fingers around my arm. He doesn’t speak; the gesture does it for him. It says he knows he needs me. It says he will continue to walk with me, even in the rain. It says, rather imperfectly, that he trusts me. That he loves me.

We shuffle forward together, Jack and I. He follows my lead, putting one foot in front of the next until we reach home, a little less afraid.