Inborn Autistic Disturbances of Affective Contact
You wear the red vest Mom got you for my reception with pleasure, the bolo tie that matches Dad’s tucked under your chin. You put your arm around my shoulders, and I laugh. Behind us, the lake stretches out; the grass is green; the sun is shining. This results in my favorite picture from the day, not because of the gaggle of relatives around us, but because of the slung arm you have around me.
As I glance at the man who has become my spouse, I ignore the darkness in my chest that wonders if you feel replaced.
In 1938, a man receives a thirty-three paged letter. It describes the history of Donald T., aged five years and one month, from his birth, to eating habits, to attitude. In 1943, the same man publishes a paper in the Pathology section of Nervous Child. He talks about eleven children, eight boys and three girls, all of them similar to Donald.
This is Leo Kanner, a name which will never fall on your lips but will bleed into mine, and our mother’s, and maybe even our father’s. This is Leo Kanner, the man who really names you.
We are children again. I’m five, and you’re four or three. Or maybe I’m six, and you’re five or four. Our parents are arguing, or maybe aren’t; our father is marching towards the grey and blue doors with our mother beside him. Maybe, maybe not. Maybe he was pushing a cart back to the car, full of frozen chicken breast and vegetables we couldn’t otherwise afford.
The white letters ahead say “Sam’s Club,” our favorite place. You will spend the hour we are there looking through the baby books and toys. I will complain that you are older than this, but look through the other books, because books are the one true friend I have. One day, I’ll add video games to that list, and even movies, sometimes, while you peruse the cartoons.
But now we are five and four, or six and five, and no one is watching you. I am watching you. You run out into the parking lot, and our parents notice too late.
Leo Kanner knows all their names. None of them would have shared yours. There are eleven: eight boys and three girls.
On page 222 of his 1943 article, he writes of Donald T., “He was still extremely autistic.” It is his first published use of the word. It will not be his last.
Donald’s mother writes Leo Kanner letters: March, 1941. He has improved greatly, but the basic difficulties are still evident…
We are still children. I am seven, and you are five. My new school has marbled floors in my memory. The staircases are wide and I climb three flights of them. I am in a school-within-a-school, which is actually two schools housed in a larger university building. The French kids I don’t know walk into theirs. Across the hall, I walk into mine.
I don’t know or remember the names or faces of those around me, but I follow them inside and out. We walk towards the playground. It has wood chips and monkey bars but no swing set, which disappoints me.
Maybe their words were, your brother is a retard. Maybe they were, your brother acts like this, with mocking gestures. Maybe it was just a question: why does your brother flap his hands and make noises? What I remember is the wash of hot white on my face. I remember my flying fist.
Our parents remember me crying.
Case two is Frederick W., first seen on May 27, 1942, at age six. His mother writes: He doesn’t want me to touch him or put my arm around him, but he’ll come and touch me. And this stuns her, but it would not stun our mother, this delicate decision of whom to touch.
Frederick W.’s uncle’s first words, at age six, were, “When a lion can’t talk he can whistle.” Maybe you can understand this meaning. Maybe you were whistling before you could talk, too.
We begin to age, but slowly. Beside me, you are a whisper of a boy. We have Saltines in the cabinets and Coke in the fridge until you discover chocolate syrup. Then we find that the jar of Jif Extra Crunchy, our father’s favorite, becomes sticky sweet with it. You teach me to blend my tastes.
Our routine is as always. Our mother records her classes on her handheld recorder with the little tapes, and she transcribes them at night. She is learning your language since you don’t have ours. Our father goes to work, comes home, and is laid off.
Do you remember the hospital rooms? Look: I am sitting in a corner, playing Pokemon Blue and cackling over my pink GameBoy Color. Nurses pin you down as you screech, drawing blood you barely have. I do not know, then or now, why they do this. Our father is with them. Our mother films this, intent on using it to teach you, something called a Social Story to acclimate you to new situations. This is how I remember these details, years later: I don’t.
Perhaps it is the knowledge that you and I are bound by more than blood; that your pain flows through me, too; that as children we are powerless and as adults we know too much. If I could have helped you, I would have. But I was eight or nine, and you were younger, and did I understand what was really happening? Except I understand now what I could not then, that our parents were desperate, that they were unaware then of the extent of the pain they caused you, caused us. It does not absolve them, and I cannot forgive them for you.
But at the end of it, as always, we return home. You run from one corner of the hall to the next. You add jumps at the end and roar at your own strength.
Richard M., February 5, 1941. Age three years and three months. The specificity of dates and ages is inconsistent among the eleven children, the eight boys and three girls. But I am unsurprised at the words that are written for him, ones that could have been said for you.
Occasionally, he looked up at the walls, smiled and uttered short staccato forceful sounds—“Ee! Ee! Ee!”
We are aging. I am eleven or twelve; you are ten or eleven. My body is curving not just around my belly but my hips and thighs. I resent being told that I’m a woman when I want to be a son. My thighs are covered in blood, but I still help Dad build things on the weekend.
You begin to gain the weight your body denied you as a child. The medicine that wretched you onto the floor, a sick dance of spine and brain shocking itself into hyperdrive, is gone from your blood. I am a stranger yet to such realities. I have no memory of them. Instead, I remember the fading cuts on my calves and the knowledge that I must protect you.
You learn phrases when we prompt you. You watch and rewind the VHS tapes of Disney movies, pausing when an animal yawns to stare at their teeth and laugh. I teach you to play video games, and Spyro the Dragon becomes your best friend. Someone tries to play with you and jumps off a cliff instead of gliding, or something equally as foolish. You tell him, “I can’t believe you just did that!” It is the longest sentence I have heard you say.
The fourth child is Paul G. He is seen in March 1941, at age five.
Occasionally there were parrot-like repetitions of things said to him.
Usually, those are the only things you speak.
We age. I take your presence in my life for granted. You are the constant, the excuse for staying home instead of being social. You allow me to settle into my room with the candles and matches, to hide in the showers with my razors. I wonder if I am shaping up to be the son our dad wanted and couldn’t get in you. I wonder if I can take care of you on my own.
Our parents long ago stopped with the favors: the daily therapists that became family, the weekly trips to the forest preserve, the monthly visits to the library for toys. I wanted a pinball machine and you took the stuffed animals. Maybe the board books. Maybe I took marbles or the Velcro ball with the sticky mitts we could use to play catch. I got good at playing with it by myself. Do you remember picking your toys up, one by one, stuffing the bag full until neither of us could carry it? You used to demand your stuffed animals be with you, in a bag. You didn’t play with them. You just wanted them beside you.
I eventually find friends who accept you, I think. It has become easier for you to be my center, to make my life about serving you. Razors, candles, baggy clothes, bleeding: I continue this routine.
The first girl is Barbara K. in 1942. She is eight years and three months old.
The second girl is Virginia S., age eleven, in October 11, 1942.
The third girl is Case 11. Her name is Elaine C., aged seven years and two months. She is seen on April 12, 1939.
They are the oldest. It will be written that boys are more commonly affected than girls. Four times as likely. Then someone will pause and wonder if it just presents differently in girls. Girls are socialized differently, they say. Girls learn more about social interaction. It’s all very binary, but still. Maybe it manifests differently in girls. Sometimes I look in the mirror and wonder how it manifests in me.
I leave for a university fifteen miles and a hundred years away. For the first time, we are separated. You sit in my room, waiting for me to come home, but I’ll never come home again, not the way you believe. Our parents leave our childhood home months later. I never forgive them, even though they do it for your sake.
You haunt me, even from so far away.
I look for you because I lose myself. The boy I love teaches me that my worth is dependent on him, that he is the metronome of my breaths and the bellows of my lungs. I drown, but don’t yet know it. Instead, I put pictures of you on my walls and buy a ring with puzzle pieces on it, not because of an organization that claims to speak for you and instead drowns out your voice, but because the brain is a puzzle, and your brain is what I want to understand the most. How are we different? How are we the same? The structures that make up my brain are the same that make up yours, and the same neural circuits should light up in response to the medicine we both take to quell the anxiety in our hearts. Yes, the brain is a puzzle—mine, yours, our family’s. The boy who does not love me back. The friends who will come and go. The ridges of the pieces on the ring are like the grooves in the brain I learn to love instead of loving myself.
Maybe wearing the ring will remind me of where I am going. Maybe wearing it will remind me of where I’ve been. Maybe wearing it will stop me from killing myself, because it reminds me that you might need me.
Seven: Herbert B. February 5, 1941. Three years and two months.
Eight: Alfred L. November 1935. Age three-and-a-half years, symbols of you—the markers by which others will see you—put into place.
Nine: Charles N. Age four-and-a-half, with symbols again. February 2, 1943.
Ten: John F. February 13, 1940. Age two years and four months.
The eleven children in all, eight boys and three girls, had an inability to relate themselves to others, with italicized emphasis. Is that the world in which you live? Do you look at others and mishear what they say? You used to cry when Dad and I argued, puberty ruining our relationship for those years called high school. When you watch television, you are focused on the stories of airplane and train crashes, the deaths of people. You no longer want to travel on either, afraid of what might happen. Is that an inability to relate yourself? Or is this what it means to be human?
Most of my memories have faded, the product of hating myself and loving a boy who did not love me, but one stands out clear: You call. I am about to start my second year in college and have packed the Honda Odyssey with the things I need to move back into my dorm. I cradle the phone to my shoulder because Mom says you want to talk to me. We share a few sentences, their phrases and meanings lost with time. I feel my heart throb against my throat and wonder, is this it? Is this our first conversation? I am staring at the trees against the park. Down the street, I am staying with a friend for a few days.
The phrases you used, did you borrow them, too? You’ve memorized lyrics to the proverbial song. Move it people! and be eagle quiet! are two of our mother’s favorites.
The second time Leo Kanner publishes the word is in the phrase extreme autistic aloneness. He has key phrases he likes to repeat, patterns which fall consistently across the eleven children, eight boys and three girls: the difficulty in pronoun usage, the repetition in movements and sound, the anxious obsessive desire for the maintenance of sameness. He says the phrases are parroted, just as often “stored” by the child and uttered at a later date.
I wonder, in this repetition, if it’s just a matter of finding something to which you can connect. The people who come after him, who come after us, will build on his work, shine light on the places it failed. They use terms like stimming and special interests and say there is not a gene for autism and we need acceptance, not a cure. They are right. Leo Kanner is the cornerstone that is crumbling, burdened by his own ignorance. By ours.
After I am past college, when I have finally left the boy who does not love me, when I come home to visit, we fight. I pluck the red shorts from your hands when you come downstairs to throw them away. I tell you that I will wear them instead. I will press them to my body and pretend to be you, pretend to be anyone who does not share my skin. You tell me over and over again that I have the red shorts. You raise your voice. I try not to laugh.
Dad laughs, though, says it is the first fight we have ever had. I put the shorts on the couch or across the chair. When I come back later to retrieve them, they are gone. I do not belong here, anymore: I have lived away for too long.
To Leo Kanner, it’s not a trifecta, but a quad-fecta: extreme autism, obsessiveness, stereotypy, and echolalia. In translation: lack of interest in others, preoccupation with the same things, repetitive movements, and parroting.
He ends his paper by concluding that the eleven children (eight boys and three girls) have inborn autistic disturbances of affective contact. What does that mean for you?
I betray you.
Years, now, if not in time, then in memory. I cut off my hair, show you the tattoos I have on my arm. I trace the elephant that brands you to me, tell you that it’s for you, a symbol of you. You give me a look of disbelief, and, as usual, say nothing.
You settle into your tablets, portable computers that let you watch YouTube wherever you are, waiting for your coffee after dinner and making sure to eat your vegetables. I wrap myself in vests and throw away my dresses, except for a few. I keep telling myself that I will return to them. I tell myself that I must in order to teach myself who I am.
Then I meet a man and fall in love, but more importantly, he falls back. One year later, we go to the courthouse. Our parents know and want more, but how much do you understand? On Thursdays, I pick you up from your after-work program at the gym. On one of these days, I tell you that you have a brother. You look confused. Did you want a brother? Did you ask for one?
Our parents drive us out to dinner, to the place where our family will later hold a reception in honor of my union. You sit next to me, or I next to you. You eat your soup or ignore the salad and beam at me. Around us plays jazz music, plush chairs, and wallpaper: an image of the 1960s, when our parents were born. We were not even a thought, then.
I notice your smile, notice the way you keep glancing at me. “What are you so excited about?”
You peek at me from the corner of your eye, grinning. “Excited about…”
“Excited for what?”
I poise, ready to tickle you just because I can. There must be a thread of normalcy in our relationship, somewhere. A reminder that you are my brother, not my son, that I am not just another caretaker but the person who loved you more than anything for so long.
“Excited for… you!”
I pause for a moment, as though I’ve imagined your words. And then I begin to laugh, because I don’t know how else to respond. Your words brand into me deeper than the elephant, more permanent than the ring on my finger.
You have shared in my happiness, telling me—in your own way—that I never abandoned you, never left you for another, never stopped putting your first. But I have. I worry that in choosing my own life, my own happiness, I have forgotten the promises I made to you, that I would put you above myself for our whole lives. I would give you the life you can’t carve for yourself. And yet you sit beside me, telling me you’re excited, accepting the new man in my life as easily as you’ve accepted me.
If only I could remember this moment when the doubts return.
Rumpus original art by David Dodd Lee.