A different parenting “profound autism” article

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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?

I don’t know how to respond to his sudden inertia, and he’s not about to tell me. Misha doesn’t talk.

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.

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.

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.

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 neurophysiologically. We don’t even have a good definition or terms to describe children who are ‘minimally verbal,’ ‘nonverbal,’ ‘aphonic,’ et cetera.”

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.”

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.