Chapter 1
Introductory
I low to begin? In bewilderment, I think — that’s the truest way. That’s where we began, all those years ago. That’s where everyone begins who has to do with autistic children. And even now, when my daughter is past forty…
This morning, at breakfast, Jessy reports an exciting discovery. It’s a word. She doesn’t say it quite clearly, but it’s recognizable: «remembrance». «A new fluffy-in-the-middle! Found in the newspaper! It is fluffy in the middle!» Her voice is triumphant, her face is alight. «I saw one! With five on each side!» Leave that unexplained, in all its strangeness. For now. Shift to something less bizarre. Somewhat less bizarre.
Jessy is painting a church. Her acrylics are neatly arranged on the table beside her. With her sable brush and steady hand she has rendered every brick, every curlicue of the Corinthian capital, every nick and breakage in the old stone, accurately, realistically, recognizably. Except that the capital is a vivid, penetrating, astonishing green. The elaborate details of the stonework are picked out in shade upon shade of rose and violet and turquoise and ultra- marine and yellow and green, a different green. The tower thrusts upward into azure sky. Into the blue (five shades, she tells me) she’s introduced three zigzags, one above another, exactly parallel, zig for zag. Lightning, she says. She’s painted lightning before, realistically, recognizably, working from photographs, since lightning, unlike a church, doesn’t hold still for her to sketch it. But no one ever photographed lightning like this, so neatly angular, so controlled. «I invented it!» Happily she explains: it’s what she sees when she has one of her brief migraine episodes. Migraine can be painless; Jessy is quite comfortable with hers. She points out that the zigzags too are colored: «Very pale mint, lavender, and yellow».
Very pale; to me they all look white. Only a scrutiny as sharp as Jessy’s would notice a difference between them. Only a mind as free of conventional perceptions would make lightning out of a migraine illusion, or convert the dramatic disorder of nature into this orderly vision, or transfigure a deteriorating church with colors beyond the rainbow. Bizarre becomes original in the language of art, becomes surreal.
But Jessy’s life, and life with Jessy, is not all strangeness. Indeed, it is less strange every year, more ordinary, more like other people’s lives. We work, we shop, we do errands. So consider this recent incident, at the little post office on the island where we spend our summers. The parking lot is full. I’ll park at the curb and rush inside while she waits in the car.
She doesn’t like that. «We could ask someone to move so we can park», she says.
«We can’t do that», I tell her.
She confirms this. «We can’t ask them because they were there first». She was just hoping; she really does know the rule. She learned it years ago, when she asked some people to move from her favorite table and had to leave the restaurant. Now I countersink the lesson: «How would you feel if someone asked us to move so they could park?»
«Hurt my feelings».
Still, evidently, more work to be done. «No, it wouldn’t hurt your feelings. Feelings get hurt when somebody does something or says something and you think they don’t like you. Or criticize you». (This is getting complicated.) «It’s not when they do something you don’t like; then you get irritated, or angry. That’s different».
That was a year ago. This week, at the supermarket, the lesson resurfaces. Near the checkout, I’ve met a friend; we get talking. Too long, thinks Jessy; the shopping’s done, time to go. She waits a minute, two, then pushes our friend’s cart with an abruptness just on the edge of aggression. She’s caught herself, but she knows she’s been rude. Later, as we talk it over, she plugs in the familiar, all-purpose phrase: «Hurt his feelings». Has there been any progress at all?
I begin to correct her. But she anticipates me. «Not hurt his feelings, irritated,» She remembered! This is the first time she’s ever made the distinction. Except, except… except that he wasn’t irritated. He’s known Jessy from childhood, and makes allowances. How to explain that and still convey the necessity of self-control? Words, feelings, contexts, human meanings. We’ll be working on these for years to come.
Forty years. The middle of the journey. The middle of her journey; nearer the end of mine. But I had better begin nearer the beginning, where I began thirty-four years ago, when I first realized there was a story to tell.
We start with an image — a tiny, golden child on hands and knees, circling round and round a spot on the floor in mysterious, self-absorbed delight. She does not look up, though she is smiling and laughing; she does not call our attention to the mysterious object of her pleasure. She does not see us at all. She and the spot are all there is, and though she is eighteen months old, an age for touching, tasting, pointing, pushing, exploring, she is doing none of these. She does not walk, or crawl up stairs, or pull herself to her feet to reach for objects. She doesn’t want any objects. Instead, she circles her spot. Or she sits, a long chain in her hand, snaking it up and down, up and down, watching it coil and uncoil, for twenty minutes, half an hour, longer…[1]
It was like that; that was when we began to know.
To know what? Today, any reasonably savvy pediatrician would know what, would recognize autism when she saw it in as pure a form as this. Autism is when your two-year-old looks straight through you to the wall behind — you, her mother, her father, sister, brother, or anybody else. You are a pane of glass. Or you are her own personal extension, your hand a tool she uses to get the cookie she will not reach for herself. Autism is when your three- year-old sorts her blocks by shape and color so you can’t think she s retarded. Autism is when your eight- year-old fills a carton with three-quarter-inch squares of cut-up paper to sift between her fingers for twenty minutes, half an hour, longer. Autism is when your eleven-year-old fills sheet after sheet with division, division by 3, by 7, 11, 13, 17, 19 But that’s enough, there are many books about autism now, anyone can read the symptoms. I need the image for what the symptoms don’t convey: this child was happy. Is it not happiness to want nothing but what you have? Craving, the Buddha taught, is the source of all suffering, detachment the road to the serene equilibrium of Nirvana.
But Nirvana at eighteen months? That’s too soon.
Yet I must start with that happiness, if only because, in those bad years, it was so thoroughly denied. Only in a few psychoanalytic backwaters is it still believed that the autistic child, like the so- called zombies of the concentration camps, is withdrawing from unbearable agony. This now discredited notion was once widely accepted, thanks to the journalistic skills of Bruno Bettelheim. «Autistic children.. fear constantly for their lives», he wrote. «The precipitating factor in infantile autism is the parent’s wish that his child should not exist».[2] His? The sentence comes from a section headed «The Mother in Infantile Autism». I could quote more, but I won’t. It is painful to return to the book Bettelheim, with his gift for metaphor, called The Empty Fortress — and thank God and the rules of evidence, it has become unnecessary. Autism is now almost universally recognized as a developmental disorder, multiply caused: genetic predisposition, pre- or postnatal viral infection, chromosomal damage, biological agents still unknown. Magnetic resonance imaging shows brain anomalies. So do autopsies. The research goes on. Every bit of it, however little it can as yet contribute to our own child’s habilitation — unlike Bettelheim, we do not speak of cure — buries deeper the injustice of that terrible accusation.
For Jessy was happy, happy circling, happy sifting, happy dividing. Her happiness was not occasional or accidental, it was characteristic of her condition, as characteristic, as needful to acknowledge, as the eerie banshee shrieks and wails that the books call tantruming, but which no parent of a normal toddler would confuse with the familiar noise of a child who’s not getting what it wants. This was not anger or frustration, this was desolation, a desolation as private, as enveloping, as her happiness.
What precipitated it? The causes were as inexplicable as the causes of her delight. Perhaps her milk was served in a glass instead of her silver cup, or offered after the meal instead of before. Perhaps she couldn’t find a particular square — she could identify it — among those thousands of bits of paper. Perhaps one of the six
