Memoir Week

Inside Autism

What two memoirs can tell us about the disease du jour.

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The world’s richest man, Bill Gates, has informally been diagnosed with it. Chloe O’Brian, the senior computer analyst on 24, one of television’s biggest hits, is thought by most fans to have it. Asperger’s syndrome, a term coined in 1981 to denote a high-functioning form of autism first described in the 1940s, surged into public consciousness along with computers: “I think all tech people are slightly autistic,” Douglas Coupland writes in Microserfs (1995).At the mild end of a fuzzy spectrum of developmental disorders that strike at communication and social skills, the “engineers’ disease” has been invested with some of the romantic glow of cutting-edge creativity once accorded to insanity: Here are society’s super-information processors. Meanwhile, at the other end of the autistic spectrum, the much more profound isolation associated with severe autism has inspired anti-technological paranoia: Mercury in childhood vaccines, many anguished parents believe, is turning responsive babies into unreachable children at an epidemic rate.

I’m not the first to suggest that if Susan Sontag were alive, she might well sigh that in autism, the information age has seized on its “master illness,” her phrase in Illness as Metaphor for the disease that comes to serve as a repository of “punitive or sentimental fantasies” about contemporary society. (Think TB and cancer.) Our impulse to mythologize disease, she warned, all too readily fuels a moralizing impulse that does nothing to cure social ills, let alone disease. Yet two recent memoirs suggest that autism might prove to be a disorder that also invites another response: a demystifying impulse—a dogged effort to decipher the bewildering anomalies of very unusual brains. A reprieve from facile diagnoses of high-tech-era victims or heroes would certainly be welcome. And it seems, well, metaphorically appropriate that the disorder that would inspire such unillusioned treatment is a condition often marked by obsession with details and trouble grasping the big picture.

On the face of it, Daniel Tammet, the author of the current best seller Born on a Blue Day: A Memoir,and Portia Iverson, who recently wrote Strange Son: Two Mothers, Two Sons, and the Quest To Unlock the Hidden World of Autism, don’t look much like coolheaded candidates for the job of probing an elusive neurological disorder. In outline, their books follow the sentimental arc of heartwarming therapeutic tales. “It is my hope that I can help other young people living with high-functioning autism … to feel less isolated and to have confidence in the knowledge that it is ultimately possible to lead a happy and productive life,” writes Tammet, a 28-year-old British “autistic savant” lately diagnosed with Asperger’s. When he breaks free of the rote self-help prose, he unveils an almost surreal perspective. His synesthetic mind is crowded with colorful numbers, which he perceives as having personalities and shapes that shift to help him do computational and memory feats (like recite pi to 22,514 digits, a world record). They help him figure out emotions, too. “If a friend says they feel sad or depressed, I picture myself sitting in the dark hollowness of number 6 to help me experience the same sort of feeling and understand it.” Words also come in colors for Tammet, and thoughts unfold as visual associations that can send him careering off on tangents.

Iverson isn’t exactly a calmly linear thinker, either. She is a woman with a cause: She founded the parents’ advocacy organization Cure Autism Now with her husband in 1995 after the birth of their severely autistic son, Dov. And she declares herself a believer in miracles on the first page of a book that builds to a made-for-movie discovery toward the end. In between, she recounts her experiences with Tito Mukhopadhyay, a severely autistic boy reared in India. His mother, Soma, laboriously taught him to read, write, and communicate using an alphabet board—an achievement Iverson wanted to learn about for her own son’s sake. Iverson was even more intent, though, on tapping Tito’s unique expressive skills (he’s also a creative writer, producing poetry and prose) to help scientists make sense of how autistic brains actually work, and re-examine beliefs about barricaded sufferers. She breathlessly describes tracking down 12-year-old Tito and Soma, getting them to the United States, and then dragging them from lab to lab for tests. Her account is charged with a missionary energy that is as unusual, in its way, as Tammet’s phenomenal memory.

In fact, they are curiously akin: What Iverson and Tammet (and Tito and, it turns out, Dov as well) set their minds to, they will not be deterred from, despite distractions. In fact, they focus so intently precisely because there are so many stimuli clamoring for their attention as they tackle the difficult task of trying to communicate the experience of struggling to communicate. The passionate persistence they share helps push these memoirs well beyond broad-brush bromides about liberating trapped souls, to convey something of the daunting challenge of making connections. As Helen Keller proclaimed a century ago, the human urge, and capacity, to communicate is profoundly associational in every sense. The underlying drive is to extend individual experience beyond the immediately perceivable—”I wish to write about things I do not understand,” Keller told Annie Sullivan very early on. The urge is also to share, and compare, experiences with others. And those experiences themselves take shape by being linked up with language in minds that are wired—perhaps no matter how tangled, or damaged, the wiring may be—to try to reach out not just to the world, but above all to other minds.

Indeed, the startling revelation of both memoirs is just that: There is reason to believe that autistic people do not lack, as cognitive psychologists have generally assumed they do, “theory of mind”—”any direct perception of other minds, or other states of mind,” as Oliver Sacks puts it. Or perhaps it is more accurate to say that some glimmer of a desire to work toward such a theory seems to be lurking there, whether the person is articulate Tammet or speech-deprived Tito or flailing Dov. These books suggest that the struggle to connect is born of a lonely initial discovery: that one’s own mind is not like other minds. And so both Tammet and Iverson, through Tito, burrow into the bewildering details of skewed perceptions, conveying a dizzying hint of what wide variations there are in a condition that is at once utterly strange and yet not completely alien. To read Tammet’s account of his childhood, which his intense visual memory summons up with uncanny immediacy, is to enter a landscape all but lost to most of us. Yet the obsessions, the disorientation, the private rituals that are writ so large for him—from the chestnuts he caresses to the silence, “soft and silvery,” he seeks out, to the terrors of school sports he flees—send messages about “normal” development, too, without normalizing his own experience. They are reminders of the active labor required, from all of us, to construct a sense of a self in relation to others.

Iverson’s quest supplies a different jolt: a reminder of how hard it is, as adult perceivers and thinkers, to pick up on what goes against the grain of our expectations. Through her immersion in Tito’s one-of-a-kind cognitive world—amid sensory overload, he relies on auditory signals, rather than “thinking in pictures,” the “classic” autistic response described by Temple Grandin, the ur-memoirist of the disorder, and Tammet—Iverson is primed to be acutely aware of how much the rest of us take for granted, and miss as a result. Even neuroscientists. Wedded to their particular expertise and testing methods, the researchers she visits are often flummoxed in taking Tito’s measure. They get frustrated by their vain efforts to make sense of his strange responses in terms of their own preconceptions. With an almost autistic obsession to explore the many anomalies of Tito’s mind, Iverson herself actually accomplishes the hardest feat of empathy: She works from an acute awareness that none of us really knows what it is like to inhabit someone else’s head, which serves as a goad to scrutinize and probe as tirelessly as possible.

And to listen. “Abstract should turn to concrete,” Tito writes in a fragment called “My Learning,” and he goes on: “Because life cannot just feed only on abstract. So my beginning to learn and express myself is a turning point in my life. I became aware that I was a part of my surroundings because I was a concrete thing in the world.” I think Susan Sontag would approve of that diagnosis.