Anti-Memoirs of Autism
By John Summers
November 30, 2022
Also published in The Point
“Misha Summers in Cambridge, 2022,” from filming for the upcoming documentary It’s Basic, directed by Marc Levin. Courtesy of Aurielle Akerele/Blowback Productions.
Boston Children’s Hospital stands two miles from our home in Cambridge, Massachusetts. Congestion on the Longfellow Bridge turns our drive to the hospital into an hour-long ordeal. We’re stuck in place, boxed in. Misha, my son, loafs in the back seat, his gaze fixed on glades of light rippling on the Charles River. I feel his mood tense. What’s eating him?
The traffic uncoils. I turn onto Charles Street and descend into an underground garage. We have waited months to see Misha’s neuro-ophthalmologist. Now we’re late, liable to return to the back of the queue.
On the sidewalk, we fall in with a morning crowd fleet of foot and thread our way among a maze of streets emblazoned with shafts of light and shade, reflections from the towering buildings. Reaching a crosswalk, we’re dashing across a busy street when Misha throws away my hand, stops and freezes. All expression drains from his face.
“C’mon Misha, watch out for the cars.”
“Misha, let’s go. On to the sidewalk. Now!”
He’s blocking both lanes of traffic.
“It’s okay, sweetie, you can do it.”
He’s not budging.
“Misha, what’s wrong?”
I don’t know how to respond to his sudden inertia, and he’s not about to tell me. Misha doesn’t talk. I step toward him, grab his hand and tug. I’ve never felt his body to be so rigid. Sometimes, my nudge in the small of his back resumes his body’s forward momentum; alternatively, my intervention prompts him to kick off his shoes, pull down his pants and shriek. I wonder how long the drivers will forebear the human statue in their path.
A honk alerts me to their gathering impatience. I bear him to the sidewalk. Ten years old and one hundred pounds, he’s tall and slender, not impossible for me to manhandle, as it were. But now his body has reawakened into a diffuse panic. At the revolving door fronting the hospital, he pivots and runs away.
Chase, capture, return. I am resolute. I believe he will regain his elasticity when we reach the cabinet of curiosities awaiting him in the doctor’s office.
The door whisks us into a lobby of strangers in a hurry. A colorful spectrum of signs hangs from the ceiling. A greeter sits in an open chair before an information desk. Misha breaks away from me and rushes toward her.
“Hi there, young man, and how are you today?” she chirps. He grabs her hair, squeezes and yanks. That’s how he is today.
“Ouch, ouch,” she winces.
“Hold still,” I instruct, “hold still, give me a minute; he’s having a hard time.”
I pry loose his grip, disentangling one finger at a time. With his free hand, he swats at a man to his left, but misses.
“Ma’am, I’m very sorry. Are you okay?” She is stricken.
Bystanders fall back, creating a circle of empty space around us. A security guard arrives on the scene. “Sir, can you help us get upstairs to our appointment?” He clears a path. I march Misha into the elevators while he snatches hair from the heads around us. He’s wailing inconsolably.
The elevator opens on the appointed floor. The guard leaves to give the ophthalmology department advance warning. Ducking into a lavatory with Misha, I kneel down and hug him, steadying his heaving shoulders. His heart is thumping. His palms are sweating. I plaster his wet eyes with kisses and taste the salt in his tears.
“What’s wrong? What can I do? Please, stop. Calm down! Tell me. Please tell me why. What can I do??”
“Waaaaaaaaaaah!!!!” Spittle flies into my face. His jaw looks poised to unhinge itself.
A receptionist waves us past the waiting area and ushers us into an exam room. The neuro-ophthalmologist enters ten minutes later to find our hair mussed, our shoulders slumped and our jackets and shoes strewn. Her computer is unplugged. Her instruments are tweaked, and her swivel chair is unscrewed. Another half an hour elapses before Misha consents to rest his chin on the perch of her binoculars and to peep through its holes.
I believed he would recuperate when we reached the exam room. I was wrong. Back home, he trembles and whimpers all afternoon.
I’m often wrong. As Misha’s single parent, I’m solely responsible for washing, dressing, nourishing, entertaining and providing for him. He sticks to me like wet paper. Even so, revelations of his vulnerability sneak up and disconcert me. Episodes of his freezing on sidewalks and crosswalks began a year ago. His stationary state arrives with swift fixity, like a curvature in spacetime stooping down a gravitational beam. I have no inkling when he’s on the verge. He freezes when stressed, but also when relaxed. Sometimes he freezes and sits down on the sidewalk. I sit alongside him and wait. Let the pedestrians stutter-step around us.
No such insouciance can slough off his thwarting traffic in a busy intersection. Nor does the typical structure of memoir frame our predicament. The motif of “the journey,” after all, narrates a dialectic of experience. Beginning with an awareness of confusion and danger, the progression of time binds with the confessions of memory on an adventure that discovers wisdom, perhaps even redemption. But Misha and I live in a plotless picaresque, pervaded by an ethics of ambiguity. His staccato style of self-expression is indelible. He hums, giggles and blisters the atmosphere with high-decibel sounds that would crack concrete, if sound could crack concrete. A thrum of body noise conveys the tenor of his moods. He flaps his arms, snaps his wrists, stomps his feet, slaps his hands, drums his fingers, rocks his hips. Sublime feeling flashes across his mien with the arch of an eyebrow. Without language, however, I can’t readily grasp what it’s like for him to be seized on that crosswalk. A stalemate in the confrontation between existential need and social necessity leaves me nonplussed.
The paradox of Misha’s remoteness in proximity suggests a counter-genre. “I have called this book Anti-Memoirs,” André Malraux wrote in his 1967 masterpiece, “because it answers a question which memoirs do not pose, and does not answer those which they do; and also because it is haunted, often in the midst of tragedy, by a presence as elusive and unmistakable as a cat slipping by in the dark.” Malraux, the French novelist, historian and statesman, eschewed the drama of confession and discovery in the passage of the self to its appointed destination. The private knowledge excavated with the memoirist’s inward searchlight interested him less than the flash of the uncanny, the unsayable or the ineffable—the intrigue “slipping by in the dark” of “the human condition.” “The most significant moments of my life do not live in me,” Malraux wrote in his Anti-Memoirs. “They haunt me and flee from me alternately.” Mine, too.
I drive Misha to Boston Children’s Hospital or Massachusetts General Hospital several times a month for observation and evaluation. Two of the world’s most sophisticated institutions of medical science, these hospitals abound with expertise in the diagnosis and treatment of the most wayward journeys and refractory cases. Here, the medical plot surveys the realm, compasses the landmarks, measures the contours and provides unity and coherence to stories of altered lives. Misha sees a cardiovascular geneticist, developmental geneticist, developmental optometrist, developmental pediatrician, neurologist, neuro-ophthalmologist, neuropsychologist, pediatric gastroenterologist and speech-and-language pathologist. What do they see? A reflection of their specializations. The neurologist diagnoses autism spectrum disorder. The speech-and-language pathologist diagnoses mixed receptive-expressive language disorder. The developmental pediatrician finds intellectual disability. The occupational therapist discovers sensory processing disorder, the gastroenterologist chronic constipation, the neuro-ophthalmologist and developmental optometrist cerebral vision impairment. Molecular sequencing by the geneticists reveals an extra chromosome in one region and a misspelling in another. No geneticist has ever seen either variant before.
No causes have been discovered. No cures have been propounded. No treatments have been effective. The doctors, without a hypothesis, aren’t even wrong. The data outputted by medical measurement loops back into itself as input, reinforcing a clinical consensus from which nothing follows.
The human sciences don’t recognize Misha at all. The linguists up the street from our home at the Massachusetts Institute of Technology, for example, believe that the birthright possession of language signifies the human distinction. “Within the first year or so after birth,” Noam Chomsky and Robert Berwick write in Why Only Us: Language and Evolution, “infants master the sound system of their language; then, after another few years have passed, they are engaging their caretakers in conversation. This remarkable, species-specific ability to acquire any human language—the ‘faculty of language’—has long raised important biological questions, including the following: What is the nature of language? How does it function? How has it evolved?”
Language does not evolve in Misha. Why not? I ask Dr. Howard Shane, his speech and language pathologist. Dr. Shane directs the Autism Language Program at Boston Children’s Hospital. Eminent in his field, he has examined, diagnosed and treated thousands of children over more than forty years. He answers my question, following Chomsky’s innateness theory, by saying that Misha’s “language processor” is broken.
“That is an interesting metaphor,” I remonstrate, “but where is that located in the brain, and how do you know it’s broken?”
“You have to infer it,” Dr. Shane counters. “I think it’s a pretty good assumption. I didn’t say it was missing, I said it was broken, not completely broken.”
“But are there neurobiological origins of the breakage? That’s what I’m asking.”
“You mean, what’s causing it?” Dr. Shane asks
“Yes, some kids with a diagnosis of autism speak and others do not. Why? The differential must be due to a brain-based problem if language is innate.”
“There’s nothing that medical science can detect right now,” Dr. Shane avows. “To really understand his brain, we don’t have the capacity. We don’t have the capacity to understand speech problems neuro-physiologically. We don’t even have a good definition or terms to describe children who are ‘minimally verbal,’ ‘nonverbal,’ ‘aphonic,’ et cetera.”
If language furnishes the distinction between humans and other animals, then what does the difference imply about people without language? Is Misha a hiccup of evolution, estranged from our species, a refugee exiled from the story of humanity? Cognition is said to require a brain capable of turning symbols into propositions, and then representing the meaning of those propositions in sentences governed by rules of logic. Does this paradigm mean Misha, without a functioning “language processor” that enables him to speak, read and write, is literally thoughtless?
I write to Chomsky and propose a refinement of his book’s title: Why Only (Nearly All of) Us? Surely, I implore, there must be a method to take the measure of our predicament, or, if not, then some speculative theory I could consult.
“It’s a very important matter,” Chomsky replies. “I wish I could recommend something. Not much seems to be understood.”
Humans more garrulous than Misha have plunged me into deeper abysses of despair. Still, trying to articulate what passes between my son and myself often feels like I’m groping after Malraux’s “cat slipping by in the dark,” chasing farragoes of meaning at once elusive and unmistakable. I open his bedroom door in the morning to find him lying on his back, his knees bent like tent poles under the covers. He rolls out of bed and runs past me to stare through the windows, frantic to bathe his eyes in the sunrays. In the winter evenings, he sits in a corner chair and stares through the window at a street lamp. The lamp is nested in electrical wires and set in the neck of a telephone pole. As the natural light wanes, the unfolding chiaroscuro engrosses his attention.
“Hey, you aren’t going to just sit there, are you?” Even as the words leave me, I realize my rhetorical question is semiconsciously devised to hammer home a point rather than to elicit an answer. Let me try again.
“C’mon, bubba, let’s go for a walk.”
“En-ne-ne.”
“Do you want me to do a puzzle with you?”
“En-ne-ne.”
“Can I sit next to you and read my book?”
“En-ne-ne.”
“Are you okay?”
“En-ne-ne.”
“You’re going to answer ‘no’ to everything I ask, aren’t you?”
“Yayesh.”
Very funny, kiddo.
He said his first word, “meatball,” at age five. Hearing him excited an assumption: if I applaud every utterance, then I can bring a grammar to the fore. “Misha, say ‘meatball?’ Misha, do you want a meatball? Okay, then say, ‘meat-ball.’ If you want to eat a meat-ball, say ‘meeet-ball.’ Misha, c’mon, say ‘meatball.’” He scarfed down plates of meatballs but said “meatball” never again.
Eight days before his seventh birthday, while assembling a puzzle, he addressed its pieces: “I see you, I see you, I see you, I see you.” First person, singular pronoun plus transitive verb plus direct object. His first sentence! He never repeated it.
A year later, we stood in the foyer of our home in Cambridge. “Misha, do you want to go to the park?” A nod is the acme of my expectation for his answer. “Not today,” he says with perfect fluency, expressing a preference and making a distinction. The words tumbled from the side of his mouth. He gave no sign of regarding them, and he never repeated them, no matter how often I goaded him.
What does he hear yet fail to comprehend? What does he comprehend yet choose to ignore? I’ve never been able to adduce a pattern from his mutter of verbal approximations. Toast started out as “toe-toe” and then became “t-t.” Yes at age five became “ssssssss” at age seven and then returned as “yaysh” at age nine. Many times, I have celebrated the embryo of a new word carried by his reedy voice, only to mark its recession into a pocket of unrecoverable time. “Nn” once meant phone, which turned into “gi-za-za.” One summer, boardwalk was “tee-pa.” The next, it was “de-wa.” Tee-pa to de-wa?
Our context, tight as shared skin, both traps and releases the gist as if by emanation. He looks up at me plaintively, brow furrowed, head cocked. I grasp his meaning and accompany him to the bathroom. Another day, he’s repeating a sequence of sounds I haven’t heard and don’t comprehend. “Pee. Aye. See.” “Pee. Aye. See.” What in the world? Unlike his syllabic blasts, this sequence contains distinct pauses. Clearly, he has something specific on his mind. He takes my face between his hands and looks at me gravely. “Pee. Aye. See.” The clever boy, I finally ascertain, has switched his mode. He’s not approximating the sound of a noun, like toast, phone or boardwalk. He’s spelling out the word. “Pee, Aye, See,” phonetically, is “P A C”—as in, Dad, I can’t find the Pac-Man pocket player game we brought home from the store last evening.
The habit of loving takes care of basic needs, even when he doesn’t discriminate among his desires. The last word in a sequence is the one he seems to hear first.
“What’s wrong, honey? Are you hungry?”
“Eee-eee.”
“Aha, I forgot your snack. I’m sorry. For dinner, how about pizza?”
“P.”
“Can you say ‘pizza?’”
“Z-p.”
“Very good. I will make some pizza.”
“G-p.” (He prefers that I get a pizza from the corner pizzeria, rather than make one).
“Now, how many slices do you want to eat?”
“Eee-eee.”
“Misha, do you want . . . one slice . . . or . . . two slices . . . of pizza?”
“P.”
“Misha, tell me, do you want one . . . or . . . two? Do you want . . . three?”
“Wee.”
“You want three slices of pizza?”
“P.”
“Misha, you want three slices of pizza? No or yes?”
“Yaysh.”
“Three slices, yes or no?”
“En-ne-ne.”
“What else do you want to eat?”
“Eee-eee.”
“Yes, I know you want to eat.”
“Eee-eee.”
“But do you want an apple or grapes for your dessert? Misha: grapes or apple?”
“A-ba.”
“Do you want me to cut your apple?”
“A-ba.”
“Okay, but do you want your apple cut?”
“Kuh.”
Meanwhile, my conversation with his sister, Niusha, brims with idioms, dependent clauses and double negatives. The dissonance exasperates him. He approaches and places two fingers across my lips, enjoining me to shut up and cook.
Autism constitutes “a whole mode of being” and “touches on the deepest questions of ontology,” the neurologist Oliver Sacks wrote. The arrow of Sacks’s insight, earned by his rapport with patients outside of the exam room, bounces off the castles where the scientists of human development toil on schematics. Entrenched, they erect distinctions between facts and values, adopt postures of detachment and carve the gestalt into a set of discrete, interlocking functions. Sacks envisioned for persons like Misha a science of “radical ontology” that jettisons the etiolated metaphysics of the concept. Rather than itemizing deficits in function, radical ontology plumbs modes of being, honors the novel entities from which concrete realities are constructed, building and preserving identity. The richness and tenacity of human perception, Sacks contended, bear no necessary relationship to propositional thinking—or any other “intellectual differences.” In his patients he witnessed a testimony synonymous with poetry. To show how life reaches past science, he turned to the genre of the “strange tale,” distinguished by “a quality of the fabulous.”
Misha, so understood, stands not behind his developmental norms but apart from them. He accesses the flux of experience from a dimension of perception that awakens hidden meanings. He pauses before the entrance to a grocery store in a downpour, laughing hysterically at the opening and closing of the pneumatic electric doors. Sopping wet, I realize that to him their metronomic cadence is a pair of hands clapping.
I relish the moments when I muster the wit and imagination to cross the threshold into his phenomenal reality, being instead of knowing. Misha climbs into his bed for the night’s sleep. I take my place lying beside him, cooing in his ear. Niusha sits at the end of the bed and kneads the bottoms of his feet. He asks for a “h-sh”: a hair shower. Leaning over, Niusha tosses locks of her hair across his face. He folds his arms across his chest and bats his eyelashes. A light from the hall shines weakly into the room. He radiates existential poise. He turns his head toward me with eyes open wide, his irises flush with color, and gazes into mine. The intimacy awes me. He is me and not-me. I am him and not-him. Father and son.
The pressure of daily rites returns our impassioned moments to the atmosphere of ambiguity. It is 8:50 p.m. on a Sunday in November, soon after he turns ten. He has spent his evening on a self-appointed mission to remove all the knobs from the doors and unscrew all the light switch plates from the walls. Now he’s chewing on the curtains in the living room.
“Misha, time for bed, it’s almost 9. Let’s go brush your teeth.”
“Wohn!” he exclaims, extending an index finger.
“Okay, one more minute.”
“He-he-he-he-he.”
“One more minute, and then you go to bed, okay?”
“K.” He sets a digital timer to count down from sixty seconds.
Beep, beep.
“Okay, bedtime. Let’s go.”
“Wohn!” he exclaims again.
“Misha, we did one minute. It’s time to go to bed.”
“Wohn!”
“Misha, let’s go!”
He darts around the corner into his bedroom and returns with a board game, Sorry, tucked under his arm. He is not sorry. He dumps the pieces onto the carpet and slams them down on the board’s colorful geometry. Bam, bam, bam.
Niusha, too, protests before bedtime. We negotiate without compromising her need to rest. If Misha could explain, then I could countenance his dawdling as well. Why is he playing for time? Is he too wound up to commence his bedtime ritual? Then I should indulge him with a half hour more. Or is he fatigued from a fitful weekend? Then I should have directed him to bed already. Truth be told, I want to go to bed. I’m exhausted.
C’mon, friend,” I exhort, “let’s go brush your teeth and get to bed. You have school tomorrow morning.”
Storming into the kitchen, he reaches across a counter and snares a carving knife from its scabbard. He looks at me, brandishing the weapon. Your move, Dad. I grab his wrist and ease the knife from his hand.
Niusha, or “yah-yah,” is listening through the walls of her bedroom. She’s hoping I don’t summon her to the brewing siege.
“Misha,” I offer upon summoning her, “do you want yah-yah to put you to bed tonight?”
“Misha,” she chimes in, “I can put you to bed. Okay?”
“En-ne-ne.”
“C’mon. Let’s go,” she says sweetly.
“En-ne-ne.”
Off he scampers into the bathroom. He pumps the faucet over the sink and flushes the toilet again and again. Why is he supplicating the plumbing? He steps into the bathtub, twists the spigot and douses his socked feet. Why? Why not? He steps out, slipping on the hardwood in the kitchen, squawking and flapping like a cross-eyed goose. At last, he flies into his bedroom. Niusha joins me at his door. He is cornered.
The hopelessness of his position impels him to a last act. He climbs a wall of shelving with surprising agility. He leans across the corner space to the window and tosses the curtain open with his free hand. The bare window—the eye in the wall—stares at us. This is new.
“Hey, Misha, what’cha doing?” I see what he is doing. He is fiddling with the latch, straining to open it.
“Dad, what’s he doing?” Worry not, Niusha. He lacks the dexterity to solve that latch. He solves the latch, thrusts open the window, and punches out the screen with a flourish.
“Dad!” Niusha yells.
“Ou-si,” he shouts. Night air gusts into the room.
“Ou-si! Ou-si!! Ou-si!!!”
Niusha and I gape at each other. Outside?
He puts his arm through the open window.
“Ou-si!!!!”
He is threatening to jump. His eloquence is magnificent.
