At a recent lecture, Temple ended by saying, “If I could snap my fingers and be non-autistic, I would not—because then I wouldn’t be me. Autism is part of who I am.” And because she believes that autism may also be associated with something of value, she is alarmed at thoughts of “eradicating” it. In a 1990 article she wrote:
Aware adults with autism and their parents are often angry about autism. They may ask why nature or God created such horrible conditions as autism, manic depression, and schizophrenia. However, if the genes that caused these conditions were eliminated there might be a terrible price to pay. It is possible that persons with bits of these traits are more creative, or possibly even geniuses—If science eliminated these genes, maybe the whole world would be taken over by accountants.
Temple arrived to pick me up at the hotel at exactly eight o’clock on Sunday morning, bringing along some additional articles of hers. I had the feeling that she was incessantly at work, that she used every available moment, “wasted” very little time, that virtually her entire waking life consisted of work. She seemed to have no recreations, no leisure. Even the weekend she had “scheduled” for me was by no means regarded as a social one but as forty-eight hours allocated for a special purpose, forty-eight hours set aside to allow a brief, intensive investigation of an autistic life, her own. If she sometimes saw herself as an anthropologist on Mars, she could see me as a sort of anthropologist, too, an anthropologist of autism, of her. She saw that I needed to observe her in all possible contexts and situations, amass a sufficient database to make correlations, to arrive at some general conclusions. That I might see with a sympathetic or friendly eye as well as an anthropological one did not at first occur to her. So our visit was seen as work, and work to be carried through with the same conscientiousness and scrupulousness as all her work. Though in the normal course of events she invites people to her house, she would ordinarily never have shown her bedroom to a visitor; much less displayed, and illustrated the use of, the squeeze machine by her bedside—but this, she realized, was part of the work.
And though normally in the course of her own life she never went to the beautiful mountains of Rocky Mountain National Park, a two-hour drive southwest of Fort Collins, having no time or impulse for leisure or recreation, she thought that I might like to go, and that this would also allow me to observe her in a quite different context—one in which we could perhaps feel unprogrammed, free.
We piled our stuff into Temple’s car—with its four-wheel drive, it was the thing for mountain terrain, especially if we wandered off-road—and took off around nine for the national park. It was a spectacular route: we climbed to higher and higher altitudes on a hairpin road, with terrifying bends, and saw towering cliffs with banded rock strata, foaming gorges far below, and a marvelous range of evergreens, mosses, and ferns. I had the binoculars out constantly and exclaimed at the wonders at every turn.
As we drove on into the park, the landscape opened out into an immense mountain plateau, with limitless views in every direction. We pulled off the road and gazed toward the Rockies—snowcapped, outlined against the horizon, luminously clear even though they were nearly a hundred miles away. I asked Temple if she did not feel a sense of their sublimity. “They’re pretty, yes. Sublime, I don’t know.” When I pressed her, she said that she was puzzled by such words and had spent much time with a dictionary, trying to understand them. She had looked up “sublime”, “mysterious”, “numinous”, and “awe”, but they all seemed to be defined in terms of one another.
“The mountains are pretty”, she repeated, “but they don’t give me a special feeling, the feeling you seem to enjoy.” After living for three and a half years in Fort Collins, she said, this was only the second time she had been to them.
What Temple said here seemed to me to have an element of sadness or wistfulness, even of poignancy. She had said similar things on the way up to the park (“You look at the brook, at the flowers, I see what great pleasure you get out of it. I’m denied that”), and, indeed, throughout the weekend. There had been a spectacular sunset the evening before (the sunsets have been particularly fine since Mount Pinatubo erupted), and this, too, she found “pretty” but nothing more. “You get such joy out of the sunset”, she said. “I wish I did, too. I know it’s beautiful, but I don’t ‘get’ it.” Her father, she added, often expressed similar sentiments.
I thought about what Temple had said on Friday night as we walked under the stars. “When I look up at the stars at night, I know I should get a ‘numinous’ feeling, but I don’t. I would like to get it. I can understand it intellectually. I think about the Big Bang, and the origin of the universe, and why we are here: Is it finite, or does it go on forever?”
“But do you get a feeling of its grandeur?” I asked. “I intellectually understand its grandeur”, she replied, and continued, “Who are we? Is death the end? There must be reordering forces in the universe. Is it just a Black Hole?”
These were grand words, grand thoughts, and I found myself looking at Temple with a heightened sense of her mental spaciousness, her courage. Or were they, for her, just words, just concepts? Were they purely mental, purely cognitive or intellectual, or did they correspond to any real experience, any passion or feeling?
Now we drove on, higher and higher, the air becoming thinner, the trees smaller, as we moved toward the summit. There was a lake near the park, Grand Lake, which I especially wanted to swim in (I am always excited by the prospect of swimming in exotic, remote lakes: I dream of Lake Baikal and Lake Titicaca), but, sadly, since I had a plane to catch, we did not have time.
On the way back down the mountain, we stopped the car for a brief plant—and bird-spotting geological walk—Temple knew all the plants, all the birds, the geological formations, even though, she said, she had “no special feeling” for them—and then we started the long descent. At one point, just outside the park, seeing a huge, inviting flat sheet of water, I asked Temple to pull over, and impetuously scrambled down toward it: I would have my swim, even though we had not made it to the lake.
It was only when Temple yelled “Stop!” and pointed that I paused in my headlong descent and looked up, and saw that my flat sheet of water, my “lake”, so still just in front of me, was accelerating at a terrifying rate a few yards to the left, prior to rushing over a hydroelectric dam a quarter of a mile away. There would have been a fair chance of my being swept along, out of control, right over the dam. There was a look of relief on Temple’s face when I stopped and climbed back. Later, she phoned a friend, Rosalie, and said she had saved my life.
We talked of many things on the way back to Fort Collins. Temple mentioned an autistic composer she knew (“He would take bits and pieces of music he had heard, and rearrange them”), and I spoke of Stephen Wiltshire, the autistic artist. We wondered about autistic novelists, poets, scientists, philosophers. Hermelin, who has studied (low-functioning) autistic savants for many years, feels that though they may have enormous talents, they are so lacking in subjectivity and inwardness that major artistic creativity is beyond them. Christopher Gillberg, one of the finest clinical observers of autism, feels that autistic people of the Asperger type, in contrast, may be capable of major creativity and wonders whether indeed Bartok and Wittgenstein may have been autistic. (Many autistic people now like to think of Einstein as one of themselves.)
Temple had spoken earlier of being mischievous, or naughty, saying she enjoyed this at times, and she had been pleased at having smuggled me successfully into the slaughterhouse. She likes to commit small infractions on occasion—“I sometimes walk two feet outside the line at the airport, a little act of defiance”—but all this is in a totally different category from “real badness.” That could have terrifying, instantly lethal consequences. “I have a feeling that if I do anything really bad, God will punish me, the steering linkage will go out on the way to the airport”, she said as we were driving back. I was startled by the association of divine retribution with
a broken steering linkage; I had never thought about how an autistic person, with a wholly causal or scientific view of the universe and a deficient sense of agency or intention, might formulate such matters as divine judgment or will.
Temple is an intensely moral creature. She has a passionate sense of right and wrong, for example, in regard to the treatment of animals; and law, for her, is clearly not just the law of the land but, in some far deeper sense, a divine or cosmic law, whose violation can have disastrous effects—seeming breakdowns in the course of nature itself. “You’ve read about action at a distance, or quantum theory”, she said. “I’ve always had the feeling that when I go to a meat plant I must be very careful, because God’s watching. Quantum theory will get me.”
Temple started to become excited. “I want to get this out before you get to the airport”, she said, with a sort of urgency.
She had been brought up an Episcopalian, she told me, but had rather early “given up orthodox belief”—belief in any personal deity or intention—in favor of a more “scientific” notion of God. “I believe there is some ultimate ordering force for good in the universe—not a personal thing, not Buddha or Jesus, maybe something like order out of disorder. I like to hope that even if there’s no personal afterlife, some energy impression is left in the universe—Most people can pass on genes—I can pass on thoughts or what I write.”
“This is what I get very upset at—” Temple, who was driving, suddenly faltered and wept. “I’ve read that libraries are where immortality lies—I don’t want my thoughts to die with me—I want to have done something—I’m not interested in power, or piles of money. I want to leave something behind. I want to make a positive contribution—know that my life has meaning. Right now, I’m talking about things at the very core of my existence.”
I was stunned. As I stepped out of the car to say goodbye, I said, “I’m going to hug you. I hope you don’t mind.” I hugged her—and (I think) she hugged me back.
Selected Bibliography
Choice is always personal and idiosyncratic, and what follows is a selection of sources which I have found enjoyable and intriguing, as well as informative, and which I would encourage the reader to sample. A full reference list follows this section. I have, in addition, listed some favorite or important books to the general reference list, even when no reference has been made to them in the text.
PREFACE
L.S. Vygotsky’s early papers, lost for many years, have been recovered and translated into English recently as The Fundamentals of Defectology.
In his autobiography, The Making of Mind, A.R. Luria traces his own intellectual development in relation to the changing moods of neurology throughout his long lifetime,—his chapter on “Romantic Science” particularly brings out his sense of the indispensability of case histories, and how the narrative is crucial to medicine. His own two “romantic” case histories—The Mind of a Mnemonist and The Man with a Shattered World—are the finest contemporary examples of such histories. A fine critical essay on “inside” narratives of illness is Anne Hunsaker Hawkins’s Reconstructing Illness: Studies in Pathography.
Kurt Goldstein’s general discussion of neurological health, disorder, and rehabilitation is to be found in his remarkable 1939 book, The Organism (especially Chapter 10).
The postwar rationalist thinkers on health and disease have been especially Georges Canguilhem and Michel Foucault. Central books are Canguilhem’s The Normal and the Pathological and Foucault’s Mental Illness and Psychology.
Gerald Edelman has published five books on his theory of neuronal group selection; the most recent and most readable is Bright Air, Brilliant Fire. Israel Rosenfield’s The Invention of Memory gives a clear history of classical, localizationist neurology, and a sense of how radically neurology may have to be revised in the light of Edelman’s theory. I find Edelman’s ideas extremely exciting, providing a neural basis, as they aim to do, for the entire range of mental processes from perception to consciousness, and for what it means to be human and a self. An entire new theoretical neuroscience seems to spring from them. I have published two essays on Edelman’s work myself in The New York Review of Books: “Neurology and the Soul” and “Making Up the Mind.”
In a more general way, I have very much enjoyed Freeman Dyson’s Infinite in All Directions (originally entitled, when given as the Gifford Lectures, “In Praise of Diversity”). The sense of nature’s richness and complexity and creativity is also conveyed in all of Ilya Prigogine’s books—my favorite is From Being to Becoming—and in a book of extraordinary range, Murray Gell—Mann’s The Quark and the Jaguar: Adventures in the Simple and the Complex.
THE CASE OF THE COLORBLIND PAINTER
A charming early book (it contains the report on the achromatopic surgeon who fell off his horse, and other gems) is Mary Collins’s 1925 Colour-Blindness. Arthur Zajonc’s Catching the Light: The Entwined History of Light and Mind is a beautifully researched and written book, especially interesting in its consideration of Goethe’s ideas on color and their relation to Land’s. (Zajonc also speaks of the case of Jonathan I.)
Though Schopenhauer wrote a youthful essay “On Vision and Colour”, this is not readily accessible in English. But thoughts on color vision punctuate his magnum opus, The World as Will and Representation, and increased with every edition in his lifetime.
The nineteenth-century debate between different theories of color vision and their advocates comes to life in Steven Turner’s In the Eye’s Mind: Vision and the Helmholtz-Hering Controversy, and in an excellent essay-review of this by C.R. Cavonius.
Semir Zeki has been the pioneer investigator of mechanisms of color perception in the monkey; a synthesis of his work and its relation to current neuroscience is provided in his book A Vision of the Brain. A grand synthesis at a higher level, the level of visual awareness, is given by Francis Crick in The Astonishing Hypothesis: The Scientific Search for the Soul. Both of these books are quite accessible to the general reader. (And both discuss at length the case of Jonathan I.)
Antonio and Hanna Damasio and their colleagues have published many minute clinical studies of cerebral achromatopsia. Antonio Damasio has given a very full, if somewhat technical, account of this and other visual disorders in his chapter in Principles of Behavioral Neurology, and a more general account, coupled with reflections on the theoretical and philosophical importance of such observations, in his recent book, Descartes’ Error.
Edwin Land’s papers have recently been published in their entirety, but one of the most vivid of his accounts is “The Retinex Theory of Color Vision”, in Scientific American. An excellent essay on Land is “I Am a Camera”, by Jeremy Bernstein (this, too, refers to the case of Jonathan I.). And a fascinating film showing the chaos that would result if we did not have color constancy is Colorful Notions, originally broadcast by the BBC’s Horizon Series in 1984.
The Oxford Companion to the Mind, edited by Richard Gregory, is an indispensable reference on all sorts of neurological and psychological topics. It includes very good articles by Tom Troscianko, “Colour Vision: Brain Mechanisms”; by W.A.H. Rushton, “Colour Vision: Eye Mechanisms”; and by J.J. McCann, “Retinex Theory and Colour Constancy.”
An interesting account of the beginnings of color photography, “The First Color Photographs”, by Grant B. Romer and Jeannette Delamoir, was published in the Scientific American of December 1989. I published a letter on the subject, with reminiscences of color photography in the 1940s, in the March 1990 issue. A centenary article, “Maxwell’s Color Photograph”, by Ralph M. Evans, appeared in the November 1961 Scientific American.
The personal experiences of a congenitally achromatopic man (who is also a vision scientist) are beautifully described in Knut Nordby’s “Vision in a Complete Achromat: A Personal Account.”
Finally, Frances Futterman, the achromatopic woman whose letters I have excerpted here, has started publishing the Achromatopsia Network Newsletter and hopes to network with achro
matopic people all over the world. She may be contacted at Box 214, Berkeley, CA 94701-0214.
THE LAST HIPPIE
The grand describer of both frontal lobe and amnesic syndromes was A.R. Luria, in (respectively) Human Brain and Psychological Processes and The Neuropsychology of Memory. Both of these books are somewhat academic; it was Luria’s last wish to supplement them with “romantic” case histories. François Lhermitte’s two long papers entitled “Human Autonomy and the Frontal Lobes” give a vivid picture of his sympathetic and naturalistic approach to such patients.
By contrast, the ruthlessness that characterized the lohotomy era is described in a frightening book, Great and Desperate Cures, by Elliot Valenstein. A superb essay review of this was written for The New York Review of Books by Macdonald Critchley.
The case of Phineas Gage has excited unceasing neurological interest for nearly 150 years and even now is being re-explored using the most sophisticated techniques of reconstructive neuroimaging (see Damasio et al.’s Science article). The deepest exploration of the case, and its relevance to all nineteenth-century theorizing about the nervous system from Gall to Freud, has been provided by Malcolm Macmillan in “Phineas Gage: A Case for All Reasons” and by Antonio Damasio in Descartes’ Error.
Two of my earlier studies on memory, referred to in this chapter—“The Lost Mariner” and “A Matter of Identity”—are reprinted in The Man Who Mistook His Wife for a Hat.
The field of memory research is extremely active now, and it is almost invidious to single out names. But Larry Squire and Nelson Butters are certainly leaders in this field and, individually and jointly, have written innumerable papers over the years, as well as edited the volume The Neuropsychology of Memory. Other suggested readings on the subject of memory are included in the suggested readings for “The Landscape of His Dreams.”