When I was in college, I read Dante’s Inferno about the journey through nine different circles of hell.
I loved the book, but thinking about it now—twenty years and five kids and one marriage later—I can’t help but wonder if maybe there should be a special circle, devoted to all the autism moms and dads and caregivers and grandparents.
In this section of the inferno, we would huddle together, subject to the spectrum disorder’s erratic mercy.
The only reading material would be long, complicated IEP forms, and catalogs featuring pullout couches and futons for the child who never moves out of the house.
This lovely daybed comes in plaid or microfiber, and it barely takes up any space at all!
Invitations to birthday parties and play dates would drift past, just out of our reach.
The lights would stay dim, and Elmo’s giggle would play on a continuous loop all day long.
All the melatonin bottles would be empty, and all the pharmacies close at noon.
Minecraft. Lots and lots of Minecraft.
I mean, know that autism isn’t all bad, but there are certainly some parts that are a little more, let’s say, hellish, than others.
You know, like the time I was sitting at a basketball game watching one of my kids play, and the person next to me on the bleachers looked over at my son Jack as he stimmed and jumped with a shrewd, unforgiving eye, and then turned back to me and suggested with a shrug that maybe I should try starting him on a gluten-free diet, because, you know, “Kids like that can have all sorts of problems.”
And then I texted my sister to complain about this person and when I wasn’t looking, Jack stole my phone out of my purse to download a Justin Bieber song, and he read my message and shouted, “Why did you text Aunt Sarah that you are sitting next to a fatuous a$$hole? What is a fat-ew-ous a$$hole anyway. That is a swear.”
That, ladies and gentlemen, is the autism circle of hell.
Hell is a sold-out Disney movie.
Hell is an hour wait at a restaurant.
Hell is a traffic detour, a line for Redbox, and static on the radio.
For me, at this moment, hell is sixth grade.
It’s walking as fast as I could down the long hallways of the school last week, because Jack had a meltdown over computer time.
Hell is last Sunday morning, when I told him he had to write a letter telling his teacher he was sorry, or he could not go to see Kung Fu Panda 3 with the rest of his brothers and his one sister.
Hell is watching Jack’s inner torment all afternoon long, knowing what he has to do and weighing it against what he wants to do and not knowing at all what to do.
“No sorry, I will not say sorry. No sorry.”
Then there were his heartbreakingly childish attempts to get his own way.
“The movie. When I go. Should I get some popcorn?”
“Jack. If you don’t write the note, you can’t go to the movie.”
Hell is the quietly ticking clock, and the blank piece of paper, and the realization that we were not going to change our minds.
“I am going I am going I am going let me go please I have to see it to see it to see it.”
Hell is watching him shove his feet into his boots and scramble for his coat.
“Jack. You can’t go.”
Hell is when my oldest son quietly offers to miss the movie and stay with his wild-eyed brother.
“Mom, let me stay. I can keep him calm.”
Hell is listening to my daughter promise him she can help.
“Jackie, I want you to go. Let me help you write the letter so you can see it with us.”
Hell is having to hold him back while the other kids climbed quietly into the car.
Hell is watching through the window as my husband’s black Toyota Sequoia drove down the driveway, and knowing I am alone with this boy and his rage and my stupid self-imposed consequences.
It’s turning back from the window and squaring off with my son as though we were two tigers in a cage fighting over the same piece of meat—only instead of meat were fighting over something much less tangible; something that is light and wispy and invisible.
Hell is setting the house alarm so I will hear him if he unlocks the door and runs away.
Hell is his never-ending pain, and hearing him scream he hates his life.
He hates me. He hates himself.
Hell is knowing that when the rest of my family returns—buoyant and relaxed and smelling like buttery popcorn from an afternoon at the movies, I will have nothing left to give my husband-boy-boy-girl-boy. I will be a shell of a person.
Hell is watching the complete and utter disconnect between cause and effect, behavior and consequence in Jack’s unusual mind. It’s worrying that maybe, just maybe, something is fundamentally wrong that he cannot feel remorse, or regret, or at least just scrawl some kind of fib on a piece of paper and end this tirade already.
And after approximately three hours, twelve minutes, and twenty-nine seconds, he began to wind down, like a toy whose batteries are losing power.
He dragged himself to his room, and closed all the blinds, creating a cocoon. I followed him slowly, afraid even my footsteps would reignite his fury.
I walked in behind him, and drew closer to the deep, dark center of the tenth circle.
I curled my body behind my tall boy as he sobbed in his bed, listening to him chant movie movie movie, and wondering what the f&$# I am doing.
Too often, I have no idea what I am doing, and it is like living inside of Dante’s Inferno every single day.
I stroked his sweaty head and matched his breath with mine, in and out and in and out, until we breathed deep white clouds of air together in tandem, and I asked myself, is this worth it?
Lying there, on the bottom bunk in the dark room, I wondered, what is this costing him, me, us? Perhaps something irreparable, irretrievable, irreplaceable—like a diamond ring slipping down the drain of a sink.
Yet on the other side of night is day, winter is summer, hell is heaven.
And if hell is darkness, then heaven is a shining, redeemable light.
“Jack,” I whispered into the top of his head. “I have an idea.”
So we got up from the bed, and as we walked back downstairs he clutched my right hand with both us his as though I was saving him from drowning.
“Stand behind me while I sit at my computer,” I told him. “I will type whatever you want to say.”
“No!” He snatched a piece of paper from a pile on my desk. “Here. I will write.”
I watched him scribble for a moment. He handed me the paper.
And even though daylight had long since drained from the afternoon, the room filled with sun.
It wasn’t because he doesn’t feel remorse or he doesn’t care about his behavior or he doesn’t understand consequences.
It was because he was scared he would break; the memory of it all was so painful, so shameful and scary and uncomfortable, that he couldn’t bring himself to visit the corner of his mind where it sat, tucked away safely.
“I am for. Too embarrassed for the sorry.”
(Note: I never, ever take pictures of Jack when he’s distraught, but his vulnerability and heartbreak were so poignant that I used my phone to capture them.
And when I one day look back on this terrible afternoon, and time has softened the edges and dulled the noise in a way only time can do, I want to remember how a small whitish-tannish-grayish dog never once left my son’s side—how over and over again, Wolfie drew Jack away from the flames and back into the light.
I showed this picture to Jack and he looked at it quietly for a minute. I asked him if I could use it for the blog, if I could show people how hard he worked, and he nodded his head yes.
I asked him what we should title it, and he said, “My Baddest Day.”
As he walked out the door, he turned back and said, “No. Say it is called. This is How Autism Works.”)