The Autistic Brain: Thinking Across the Spectrum [NOOK Book]

1 The Meanings of Autism

I was fortunate to have been born in 1947. If I had been born ten years later, my life as a person with autism would have been a lot different. In 1947, the diagnosis of autism was only four years old. Almost nobody knew what it meant. When Mother noticed in me the symptoms that we would now label autistic—destructive behavior, inability to speak, a sensitivity to physical contact, a fixation on spinning objects, and so on—she did what made sense to her. She took me to a neurologist.
 Bronson Crothers had served as the director of the neurology service at Boston Children’s Hospital since its founding, in 1920. The first thing Dr. Crothers did in my case was administer an electroencephalogram, or EEG, to make sure I didn’t have petit mal epilepsy. Then he tested my hearing to make sure I wasn’t deaf. “Well, she certainly is an odd little girl,” he told Mother. Then when I began to verbalize a little, Dr. Crothers modified his evaluation: “She’s an odd little girl, but she’ll learn how to talk.” The diagnosis: brain damage.
 He referred us to a speech therapist who ran a small school in the basement of her house. I suppose you could say the other kids there were brain damaged too; they suffered from Down syndrome and other disorders. Even though I was not deaf, I had difficulty hearing consonants, such as the c in cup. When grownups talked fast, I heard only the vowel sounds, so I thought they had their own special language. But by speaking slowly, the speech therapist helped me to hear the hard consonant sounds, and when I said cup with a c, she praised me—which is just what a behavioral therapist would do today.
 At the same time, Mother hired a nanny who played constant turn-taking games with my sister and me. The nanny’s approach was also similar to what behavioral therapists use today. She made sure that every game the three of us played was a turn-taking game. During meals, I was taught table manners, and I was not allowed to twirl my fork around over my head. The only time I could revert back to autism was for one hour after lunch. The rest of the day, I had to live in a nonrocking, nontwirling world.
 Mother did heroic work. In fact, she discovered on her own the standard treatment that therapists use today. Therapists might disagree about the benefits of a particular aspect of this therapy versus a particular aspect of that therapy. But the core principle of every program​ — ​including the one that was used with me, Miss Reynolds’s Basement Speech-Therapy School Plus Nanny​ — ​is to engage with the kid one-on-one for hours every day, twenty to forty hours per week.
 The work Mother did, however, was based on the initial diagnosis of brain damage. Just a decade later, a doctor would probably have reached a completely different diagnosis. After examining me, the doctor would have told Mother, “It’s a psychological problem—it’s all in her mind.” And then sent me to an institution.
 While I’ve written extensively about autism, I’ve never really written about how the diagnosis itself is reached. Unlike meningitis or lung cancer or strep throat, autism can’t be diagnosed in the laboratory—though researchers are trying to develop methods to do so, as we’ll see later in this book. Instead, as with many psychiatric syndromes, such as depression and obsessive-compulsive disorder, autism is identified by observing and evaluating behaviors. Those observations and evaluations are subjective, and the behaviors vary from person to person. The diagnosis can be confusing, and it can be vague. It has changed over the years, and it continues to change.
 The diagnosis of autism dates back to 1943, when Leo Kanner, a physician at Johns Hopkins University and a pioneer in child psychiatry, proposed it in a paper. A few years earlier, he had received a letter from a worried father named Oliver Triplett Jr., a lawyer in Forest, Mississippi. Over the course of thirty-three pages, Triplett described in detail the first five years of his son Donald’s life. Donald, he wrote, didn’t show signs of wanting to be with his mother, Mary. He could be “perfectly oblivious” to everyone else around him too. He had frequent tantrums, often didn’t respond to his name, found spinning objects endlessly fascinating. Yet for all his developmental problems, Donald also exhibited unusual talents. He had memorized the Twenty-Third Psalm (“The Lord is my shepherd ...”) by the age of two. He could recite twenty-five questions and answers from the Presbyterian catechism verbatim. He loved saying the letters of the alphabet backward. He had perfect pitch.
 Mary and Oliver brought their son from Mississippi to Baltimore to meet Kanner. Over the next few years, Kanner began to identify in other children traits similar to Donald’s. Was there a pattern? he wondered. Were these children all suffering from the same syndrome? In 1943, Kanner published a paper, “Autistic Disturbances of Affective Contact,” in the journal Nervous Child. The paper presented the case histories of eleven children who, Kanner felt, shared a set of symptoms—ones that we would today recognize as consistent with autism: the need for solitude; the need for sameness. To be alone in a world that never varied.
 From the start, medical professionals didn’t know what to do with autism. Was the source of these behaviors biological, or was it psychological? Were these behaviors what these children had brought into the world? Or were they what the world had instilled in them? Was autism a product of nature or nurture?
 Kanner himself leaned toward the biological explanation of autism, at least at first. In that 1943 paper, he noted that autistic behaviors seemed to be present at an early age. In the final paragraph, he wrote, “We must, then, assume that these children have come into the world with innate inability to form the usual, biologically provided affective contact with people, just as other children come into the world with innate physical or intellectual handcaps [sic].”
 One aspect of his observations, however, puzzled him. “It is not easy to evaluate the fact that all of our patients have come of highly intelligent parents. This much is certain, that there is a great deal of obsessiveness in the family background”—no doubt thinking of Oliver Triplett’s thirty-three-page letter. “The very detailed diaries and reports and the frequent remembrance, after several years, that the children had learned to recite twenty-five questions and answers of the Presbyterian Catechism, to sing thirty-seven nursery songs, or to discriminate between eighteen symphonies, furnish a telling illustration of parental obsessiveness.
 “One other fact stands out prominently,” Kanner continued. “In the whole group, there are very few really warmhearted fathers and mothers. For the most part, the parents, grandparents, and collaterals are persons strongly preoccupied with abstractions of a scientific, literary, or artistic nature, and limited in genuine interest in people.”
 These observations of Kanner’s are not as damning about parents as they might sound. At this early point in his study of autism, Kanner wasn’t necessarily suggesting cause and effect. He wasn’t arguing that when the parents behaved this way, they caused their children to behave that way. Instead, he was noting similarities between the parents and his patients. The parents and their child, after all, belonged to the same gene pool. The behaviors of both generations could be due to the same biological hiccup.
 In a 1949 follow-up paper, however, Kanner shifted his attention from the biological to the psychological. The paper was ten and a half pages long; Kanner spent five and a half of those pages on the behavior of the parents. Eleven years later, in an interview in Time, he said that autistic children often were the offspring of parents “just happening to defrost enough to produce a child.” And since Kanner was the first and foremost expert on the subject of autism, his attitude shaped how the medical profession thought about the subject for at least a quarter of a century.
 Late in life, Kanner maintained that he “was misquoted often as having said that ‘it is all the parents’ fault.’” He also complained that critics overlooked his original preference for a biological explanation. And he himself was no fan of Sigmund Freud; in a book he published in 1941, he wrote, “If you want to go on worshipping the Great God Unconscious and His cocksure interpreters, there is nothing to keep you from it.”
 But Kanner was also a product of his time, and his most productive years coincided with the rise of psychoanalytic thought in the United States. When Kanner looked at the effects of autism, he might have originally told himself that they were possibly biological in nature, but he nonetheless wound up seeking a psychological cause. And when he speculated on what villains might have inflicted the psychic injury, he rounded up psychoanalysis’s usual suspects: the parents (especially Mom).
 Kanner’s reasoning was probably complicated by the fact that the behavior of kids who are the product of poor parenting can look like the behavior of kids with autism. Autistic kids can seem rude when they’re actually just oblivious to social cues. They might throw tantrums. They won’t sit still, won’t share their toys, won’t stop interrupting adult conversations. If you’ve never studied the behaviors of children with autism, you could easily conclude that these kids’ parents are the problem, not the kids themselves.
 But where Kanner went horribly wrong was in his assumption that because poor parenting can lead to bad behavior, all bad behavior must therefore be the result of poor parenting. He assumed that a three-year-old’s ability to name all the U.S. presidents and vice presidents couldn’t not be caused by outside intervention. He assumed that a child’s psychically isolated or physically destructive behavior couldn’t not be caused by parents who were emotionally distant.
 In fact, Kanner had cause and effect backward. The child wasn’t behaving in a psychically isolated or physically destructive manner because the parents were emotionally distant. Instead, the parents were emotionally distant because the child was behaving in a psychically isolated or physically destructive manner. My mother is a case in point. She has written that when I wouldn’t return her hugs, she thought, If Temple doesn’t want me, I’ll keep my distance. The problem, though, wasn’t that I didn’t want her. It was that the sensory overload of a hug shorted out my nervous system. (Of course, nobody back then understood about sensory oversensitivity. I’ll talk about this topic in chapter 4.)
 Kanner’s backward logic found its greatest champion in Bruno Bettelheim, the extremely influential director of the University of Chicago’s Orthogenic School for disturbed children. In 1967 he published The Empty Fortress: Infantile Autism and the Birth of the Self, a book that popularized Kanner’s notion of the refrigerator mother. Like Kanner, Bettelheim thought that autism was probably biological in nature. And like Kanner, his thinking on autism was nonetheless grounded in psychoanalytic principles. Bettelheim argued that an autistic child was not biologically predetermined to manifest the symptoms. Instead, the child was biologically predisposed toward those symptoms. The autism was latent—until poor parenting came along and breathed life into it.
 If Mother hadn’t taken me to a neurologist, she might eventually have been vulnerable to the refrigerator-mother guilt trip. She was only nineteen when I was born, and I was her first child. Like many young first-time mothers who find themselves confronting a child’s “bad” behavior, Mother initially assumed she must be doing something wrong. Dr. Crothers, however, relieved that anxiety. When I was in second or third grade, Mother did get the full Kanner treatment from a doctor who informed her that the cause of my behavior was a psychic injury and that until I could identify it, I was doomed to inhabit my own little world of isolation.
 But the problem wasn’t a psychic injury, and Mother knew it. The psychoanalytic approach to a disorder was to find the cause of a behavior and try to remove it. Mother assumed she couldn’t do anything about the cause of my behavior, so her approach was to concentrate on dealing with the behavior itself. In this respect, Mother was ahead of her time. It would take child psychiatry decades to catch up with her.
 People often ask me, “When did you really know you were autistic?” As if there were one defining moment in my life, a before-and-after revelation. But the conception of autism in the early 1950s didn’t work that way. Like me, child psychiatry back then was still young. The words autism and autistic barely appeared in the American Psychiatric Association’s initial attempt to standardize psychiatric diagnoses, in the first edition of the Diagnostic and Statistical Manual of Mental Disorders, published in 1952, when I was five. The few times those words did appear, they were used to describe symptoms of a separate diagnosis, schizophrenia. For instance, under the heading Schizophrenic Reaction, Childhood Type, there was a reference to “psychotic reactions in children, manifesting primarily autism”—without further explanation of what autism itself was.
 Mother remembers one of the early doctors in my life making a passing reference to “autistic tendencies.” But I myself didn’t actually hear the word autistic applied to me until I was about twelve or thirteen; I remember thinking, Oh, it’s me that’s different. Even then, though, I still wouldn’t have been able to tell you exactly what autistic behaviors were. I still wouldn’t have been able to tell you why I had such trouble making friends.
 As late in life as my early thirties, when I was pursuing my doctorate at the University of Illinois at Urbana-Champaign, I could still overlook the role that autism played in my life. One of the requirements was a statistics course, and I was hopeless. I asked if I could take the course with a tutor instead of in a classroom, and I was told that in order to get permission to do that, I would have to undergo a “psychoeducational assessment.” On December 17 and 22, 1982, I met with a psychologist and took several standard tests. Today, when I dig that report out of a file and reread it, the scores practically scream out at me, The person who took these tests is autistic.
 I performed at the second-grade level on a subtest that required me to identify a word that was spoken at the rate of one syllable per second. I also scored at the second-grade level on a subtest that required me to understand sentences where arbitrary symbols replaced regular nouns​ — ​for instance, a flag symbol meant “horse.”
 Well, yeah, I thought, of course I did poorly on these tests. They required me to keep a series of recently learned concepts in my head. A flag means “horse,” a triangle means “boat,” a square means “church.” Wait—what does a flag mean again? Or the syllable three seconds ago was mod, the syllable two seconds ago was er, the syllable one second ago was a, and now the new syllable is tion. Hold on—what was that first syllable again? My success depended on my short-term memory, and (as is the case with many autistic people, I would later learn) my short-term memory is bad. So what else was new?
 At the other extreme, I scored well at antonyms and synonyms because I could associate the test words with pictures in my mind. If the examining psychologist said “Stop” to me, I saw a stop sign. If he said “Go,” I saw a green light. But not just any stop sign, and not just any green light. I saw a specific stop sign and a specific green light from my past. I saw a whole bunch of them. I even recalled a stop-and-go light from a Mexican customs station, a red light that turned green if the officers decided not to search your bags—and I’d seen that light more than ten years earlier.
 Again: So what? As far as I could tell, everybody thought in pictures. I just happened to be better at it than most people, something I already knew. By this point in my life, I had been making architectural drawings for several years. I’d already had the experience of completing a drawing and looking at it and thinking, I can’t believe I did this! What I hadn’t thought was I can do this kind of drawing because I have walked around the yard, committed every detail of it to memory, stored the images in my brain like a computer, then retrieved the appropriate images at will. I can do this kind of drawing because I’m a person with autism. Just as I didn’t think, I scored in the sixth percentile in reasoning and in the ninety-fifth percentile in verbal ability because I’m a person with autism. And the reason I didn’t think these thoughts was that “person with autism” was a category that was only then beginning to come into existence.
 Of course, the word autism had been part of the psychiatric lexicon since 1943, so the idea of people having autism had been around at least as long. But the definition was loose, to say the least. Unless someone pointed out an oddity in my behavior, I simply didn’t go around thinking of what I was doing in terms of my being a person with autism. And I doubt that I was the exception in this regard.
 The second edition of the Diagnostic and Statistical Manual of Mental Disorders was published in 1968, and, unlike its 1952 predecessor, it contained not one mention of autism. The word autistic did appear twice, but again, as in the DSM-I, it was there only to describe symptoms of schizophrenia and not in connection with a diagnosis of its own. “Autistic, atypical, and withdrawn behavior,” read one reference; “autistic thinking,” read another. In the 1970s, however, the profession of psychiatry went through a complete reversal in its way of thinking.
 Instead of looking for causes in the old psychoanalytic way, psychiatrists began focusing on effects. Instead of regarding the precise diagnosis as a matter of secondary concern, the profession began trying to classify symptoms in a rigid and orderly and uniform fashion. The time had come, psychiatrists decided, for psychiatry to become a science.
 This reversal happened for a few reasons. In 1973 David Rosenhan, a Stanford psychiatrist, published a paper recounting how he and several colleagues had posed as schizophrenics and fooled psychiatrists so thoroughly that the psychiatrists actually institutionalized them, keeping them in mental hospitals against their will. How scientifically credible can a medical specialization be if its practitioners can so easily make incorrect diagnoses—misdiagnoses, moreover, with potentially tragic consequences?
 Another reason for the reversal was sociological. In 1972, the gay rights movement protested the DSM’s classification of homosexuality as a mental illness, something that needed to be cured. They won that battle, raising the question of just how trustworthy any diagnosis in the DSM was.
 But probably the greatest factor in changing the focus of psychiatry from causes to effects, from a search for a psychic injury to the cataloging of symptoms, was the rise of medication. Psychiatrists found that they didn’t need to seek out causes for symptoms to treat patients. They could ease a patient’s suffering just by treating the effects.
 But in order to treat the effects, they had to know what medications matched what ailments, which meant that they had to know what the ailments were, which meant that they were going to have to identify the ailments in a specific and consistent manner.
 One result of this more rigorous approach was that the APA task force finally asked the obvious question: What is this autistic behavior that is a symptom of schizophrenia? In order to answer the question, the task force had to isolate autistic behavior from the other symptoms suggesting schizophrenia (delusions, hallucinations, and so on). But in order to describe autistic behavior, they had to describe autistic behaviors—in other words, have a checklist of symptoms. And a checklist of symptoms that didn’t overlap with the other symptoms of schizophrenia suggested the possibility of a separate diagnosis: infantile autism, or Kanner’s syndrome.