“What, after all, is normality? Given that there is an enormous range of social behavior with many degrees of adaptation and success or failure in the normal population, where does normality end and abnormality begin? Should one instead talk about normal and abnormal shading into each other? To put it another way, should one look at Asperger’s syndrome as a normal personality variant? ”
Lawrence Osborne, who offers this quotation from autism researcher Uta Frith in the ﬁrst chapter of American Normal, interviewed many people with Asperger’s syndrome in an attempt to answer this provocative question.
Asperger’s was added in 1994 to the list of disorders in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). Many of the symptoms listed there are similar to those of autism, but the severe behavior problems and obvious speech delay seen in autism prior to age three are usually absent in Asperger’s. People with Asperger’s often have normal or superior intelligence; their problems are mainly social. As described by Lorna Wing, M.D., the deﬁning clinical features of Asperger’s are lack of empathy; naive, inappropriate, one-sided conversations; inability to form friendships; pedantic, repetitive speech; poor nonverbal communication; intense interest in certain subjects; and clumsy, ill-coordinated movements.
In my opinion, a child with autism has a true disorder that calls for a medical diagnosis. In my own case, my worried mother knew something was drastically wrong with me because at age two and a half I could not speak and had constant tantrums. In a young autistic child, speech development is obviously delayed, the child has little or no interest in people, and exhibits repetitive behaviors such as hand ﬂapping or rocking. The abnormal behavior is so pronounced that the child has great difﬁculty participating in normal activities. Experienced parents will tell you that an autistic child’s behavior is simply outside the realm of normal variation in personality. An adult diagnosed with autism who has limited speech or no speech is also outside the realm of normal variation; there exists a true medical disorder.
An Asperger’s child, on the other hand, has much more normal speech development and may learn to read at an early age. Asperger’s children may not be identiﬁed as such until they start having social problems at age eight or nine. They are the children who are “little professors” at four and ﬁve, but later become lonely, with few friends. Adults with Asperger’s run the gamut from brilliant scientists to unhappy loners on the fringes of society. Osborne’s interviews capture this range.
Osborne has the same reservations I do about the DSM. Some of the listed mental disorders are the names of personality traits. At what point, after all, does a variation in personality become a true neurological disorder such as severe depression, bipolar disorder, schizophrenia, anxiety, or obsessive-compulsive disorder? When does moody become manic depressive? When does feeling blue become depressed? When does being fussy about cleanliness slip over into obsessive-compulsive disorder? When does autism turn into Asperger’s, and when is Asperger’s mild enough to be called something like “computer nerd”?
LOOKING INTO THE BRAIN
Although Osborne describes Asperger’s as a neurological condition, he refers only once, brieﬂy, to what brain researchers have learned about it. That accumulating knowledge may well help us understand the distinctions—normal, abnormal, Asperger’s —that concern Osborne.
The consensus of articles I have reviewed on brain research, including the use of imaging to discover the characteristics of serious disorders, is that even genuine disorders deserving a medical diagnosis are on a continuum with the normal. John Ratey and Catherine Johnson write in The Shadow Syndrome (Bantam Books, 1998) that traits associated with severe disorders are observed, in milder versions, in many so-called neurotypical people. Thus, I have seen Aspergerlike traits in family members of people with autism: a father who is a computer programmer with poor social skills, an eccentric uncle, and other family members with depression or anxiety. Often, these “shadow syndromes” acquire no speciﬁc label or diagnosis.
Furthermore, autism or Asperger’s may manifest differently in different people. Most likely, the core neurological deﬁcit is a lack of social relatedness due to abnormalities in the amygdala and anterior cingulate. What will differ greatly will be the person’s area of talent, visual or nonvisual modes of thinking, and severity of anxiety and oversensitivity to sensory input.
Autopsies of autistic, Asperger’s, and normal brains by Margaret Bauman and her colleagues reveal that in both autism and Asperger’s there is immature development of the cerebellum, amygdala, and hippocampus. Small cells are packed tightly in these immature parts of the brain, signifying true immature development, not damage or atrophy. Brains from people with autism are more immature in hippocampus development than are Asperger’s brains, which may help explain the cognition problems we see in low-functioning autism. The situation is reversed for the amygdala, a part of the brain that processes emotion. Here, the Asperger’s brain is often more abnormal than the autistic brain. Could the more normal hippocampus preserve the cognitive function in Asperger’s, with the less normal amygdala causing the social problems?
Corroboration comes from brain scan studies showing that people with Asperger’s or high-functioning autism process emotional information differently than do normal subjects. The British autism researcher Simon Baron-Cohen has done functional MRI studies indicating that normal people activate the amygdala to judge the expression in another person’s eyes, but people with Asperger’s call on fronto-temporal regions of the brain. It is true that brain scan studies show less clear-cut results in terms of differences in amygdala size than do autopsies, but this may result from the subjects’ positioning in the scanner, from gender, or from differences in diagnostic criteria. In 1999, Elizabeth Aylward and her colleagues at the University of Washington School of Medicine found that in male non-mentally retarded autistic adolescents and young adults, the amygdala was signiﬁcantly smaller compared to normals. But a British study by Matt Howard and his colleagues showed that high-functioning autistics had a larger abnormal amygdala. A third study, by Mehmet Haznedar and Monte Buchsbaum, showed no differences. Possibly the differences among these studies could be explained by differences in the criteria used to diagnose the subjects. Also, a brain autopsy is more accurate than a brain scan on a living person. Brain autopsy research has shown that both Asperger’s people and the highest functioning people with autism have a small amygdala; in cases of low-functioning people, by contrast, the amygdala is more normal and the hippocampus more abnormal.
More recently, a study by Haznedar revealed that in the brain of the high-functioning autistic or Asperger’s person, the circuit between the anterior cingulate in the frontal cortex and the amygdala is not completely connected. As a result, people with autism or Asperger’s have decreased metabolism in the anterior cingulate.
These brain studies demonstrate that the social deﬁcits in autism and Asperger’s are highly correlated with measurable biological differences. But the question remains: When does a difference in the size of a certain brain region become an abnormality, instead of just a normal variation? If I selected 100 people at random from a large corporation or at an airport and scanned their brains, I would ﬁnd a range of differences in the size and activation level of their amygdalas. It is likely that brain scan results from this normal cross section of the public could be closely correlated with tests that evaluate sociability and social skills. Conducting this experiment on the general public would show that normal brain variation could be measured. Furthermore, people tend to choose careers that they are good at, and I predict that there would be a high correlation between a person’s job and the characteristics of the amygdala. Out of the 100 hypothetical people from a large corporation whose brains were scanned, the technical people in the computer department would probably show less activation in their amygdalas compared to the highly social salesman in the marketing department.
GENIUS IS AN ABNORMALITY
Writing on “The Geek Syndrome” in the December 2001 issue of Wired magazine, Steve Silberman states that autism and its milder cousin, Asperger’s syndrome, are surging among children in Silicon Valley. Baron-Cohen and his colleague Sally Wheelwright have found signiﬁcantly more engineers, scientists, and accountants than average in the family history of children with autism. In my own case of autism, my family ﬁts this proﬁle. My grandfather on my mother’s side was an MIT-trained engineer who was co-inventor of the automatic pilot for airplanes, and I have several second and third cousins who are mathematicians. On my father’s side were many bankers and ﬁnancial people. Baron-Cohen looks upon the milder variants of autism and Asperger’s as differences in cognitive styles. Normal people are good at “folk psychology” (social interactions), he says, and people with Asperger’s are interested in “folk physics” (how things work).
One day a frantic mother called me, upset that her young child, who had an IQ over 150, had been diagnosed with Asperger’s. I told her that before all the labels were used, her child might well have been diagnosed as gifted. Both Osborne and I are concerned about medicalizing what may be a normal variation in personality. In American Normal, he describes his visits with several Asperger’s children who had “sky high” IQs. One ﬁve-year-old, for example, knew “the velocity of every famous tornado in history and was something of an expert on things like G forces and the statistics of tornado-related destruction.” Osborne goes on to quote Dr. Mel Levine, a professor of pediatrics at the University of North Carolina and nationally known author and consultant on learning disorders, who said that American psychiatry seems unable to conceive of healthy eccentricity or complex individuality. Instead, psychiatrists have evolved an elaborate coding system, which, he fears, gives them undue control over families.
I, too, am concerned that a diagnosis of Asperger’s may, for example, keep a talented child out of the gifted program at school. I wonder what would have happened to great geniuses in the past if they had been labeled with a disability. Norm Ledgin, the author of Diagnosing Jefferson, and I recently searched the literature to proﬁle famous scientists and musicians who displayed traits of Asperger’s and found many well-known names, including Charles Darwin, Gregor Mendel, Marie Curie, Carl Sagan, Wolfgang Amadeus Mozart, and Thomas Jefferson.
Osborne devotes two chapters of American Normal to proﬁling Thomas Jefferson and the famous classical pianist Glenn Gould. Jefferson is described as pacing back and forth and constantly singing under his breath. His lifelong tinkering with his mansion Monticello was an Aspergerish obsession, and he loved mechanical devices, constructing and using elaborate dumbwaiters. Gould was much weirder than Jefferson, and, as he grew older, his obsessions worsened. He was an intense hypochondriac, for example, and collected hotel keys. In many ways a child who never grew up, Gould had an odd, stiff gait. Clumsiness and an odd gait are common in people with Asperger’s, probably as a result of immature development of the cerebellum and vestibular system (a ﬁnding of Bauman’s autopsy studies). In my own case, a brain scan indicated that my cerebellum was 20 percent smaller than normal; this would explain my own problems with balance. Despite Gould’s oddities, Osborne writes that he had an “uncanny knack for instantaneously seizing the structure of complex musical pieces in their totality.”
People with great abilities in one area often are poor in another. Einstein had a brain abnormality that some researchers think made his genius possible. According to Sandra Witelson, a researcher at McMaster University in Ontario, Canada, the parts of his brain that processed visual and mathematical thought were fused together. He was in the right environment to express his genius, however; today, he might be shunted through the special education system. Not to mention that a young patent clerk today would have great difﬁculty getting published in a physics journal.
SALVATION IN WORK
Osborne interviewed many adults with Asperger’s, ranging from Jerry Newport, a number savant, to unhappy and bitter loners living on the outskirts of society. One computer programmer at a university was obsessed with clocks and time; he had drifted from odd job to odd job until he found an employer who understood his eccentricities and recognized his talents.
The happiest Asperger’s people I have met have intellectually satisfying work; many are computer programmers. If a boring job cannot be avoided, a good hobby can be a lifesaver, in part because Asperger’s and high-functioning autistic people often socialize best through shared interests. As Osborne comments, unhappy Asperger’s people have no work and no play. This is why it is so important to develop an autistic or Asperger person’s talents into enjoyable skills such as computer programming, engineering, architectural drafting, accounting, art, or music. The Asperger’s mind enjoys and focuses on details, while the normal mind is more skilled at assembling whole concepts from details. Some people with Asperger’s are visual thinkers and others are math, music, or number thinkers, but all think in speciﬁcs.
I found it painful to read the parts of Osborne’s book about unhappy, angry people with Asperger’s. Those proﬁled in the ﬁrst part of the chapter called “Autibiographies” (an expression used by some people with autism for biographies by those who share their condition) have severe problems with sensory oversensitivity to bright light or noise. One man was so sensitive to sound that he experienced the ringing of a cell phone as excruciating. These extreme sensitivities make functioning in a normal workplace uncomfortable or even painful. (I might mention that my own problems with sound and touch sensitivity were mild compared to some of those described by Osborne.)
One person with autism or Asperger’s syndrome may have few problems with anxiety or sensory overload, while another is crippled by oversensitivity. Even if we consider Asperger’s to be at the extreme end of normal variation in personality, the sensory oversensitivity problems are a real disability that interferes with normal activities. Fortunately, some problems with sensory oversensitivity can be reduced through special diets, medication, auditory training, or special glasses. (See Donna Williams’s book Autism—An Inside-Out Approach: An Innovative Look at the Mechanics of “Autism” and Its Developmental “Cousins.”)
BETTER LIVING THROUGH CHEMISTRY
Osborne correctly asserts that far too many young children are given medication, but he sometimes ignores the biological problems that medication can help. The old advertising slogan about “better living through chemistry” rings true. There comes a point in the lives of some people with Asperger’s or high-functioning autism where they can beneﬁt from pharmaceutical treatment. For example, obsessions and anxieties often worsen with age; many high-functioning people in their late 20s or early 30s experience crippling anxiety that can sabotage their jobs. Yet, some of the most miserable people with Asperger’s either refuse to try medication or are taking the wrong one.
In my late 20s, my anxiety steadily worsened. I had panic attacks for no reason and woke up at night with my heart pounding. I resisted the idea of taking medication until 1980, when I read an article in the Archives of General Psychiatry by David Sheehan and his colleagues about endogenous anxiety. They discussed the use of tricyclic antidepressants for treating anxiety, and their list of symptoms described me. Antidepressants saved me; I would not have functioned well after age 30 without them. All my stress-related illnesses were cured; my debilitating headaches and colitis stopped. I became a reluctant believer in biochemistry.
ENVIRONMENT AND CULTURE
Osborne believes that the social environment in which the child with Asperger’s grows up has a great effect on how well he will adapt, and I agree. In the distant past, some Asperger’s-type people may have been regarded as shamans, holy men, diviners, or simply oddities. In the days before calculators, Jerry Newport’s mathematical abilities would have been greatly appreciated by many employers.
Being a child of the 1950s may have helped me, because the structured lifestyle taught me social rules. Since I do not have much innate social instinct to guide me, I had to rely on logic to learn how to behave. Fortunately, I was brought up in an environment where I was taught very clear standards of right and wrong. A person with Asperger’s may in some ways be more affected by the environment than a person with all the normal emotional wiring. If he is brought up in a nurturing environment where there are opportunities for excelling at his talents, he will ﬂourish. If he is brought up in an environment with no such opportunity, he may end up a disillusioned loner, mad at the world.
Exploring further, beyond our individual environments, in the last chapter of American Normal Osborne discusses what are called culture-bound syndromes. For example, why do American women get anorexia nervosa but women in indigenous cultures do not? Osborne asks: “Was it possible that around a core of biological illness a large superstructure of behaviors and moods had been created by society itself?”
I am drawn to this concept. Extremes in biological variation can manifest themselves in different ways in different environments.
Genetically, people can be either high or low anxiety; I feel that my own nervous system was designed to be vigilant for danger. Depending upon the environment, an urban person with high anxiety might become a hypochondriac, but in a native society he might become a great lookout who could spot dangerous animals. Perhaps the low-anxiety (low-fear) person might be a criminal in one environment and a courageous war hero in another.
In his quest to understand the effects of culture on our deﬁnition of mental disorders, Osborne visited Dayak farmers on the edge of the jungle in Malaysia. His goal was to observe what are called “latahs.” Known in the West as “hyperstartle syndrome,” latah occurs mainly in elderly women. When they are startled by sudden noises or other surprises, they go into a trance, utter obscenities, and imitate any silly behavior they see or are asked to do—for example, hopping up and down like a grasshopper. They do not mind being latahs, and no attempt is made to cure them. The Dayaks live in a decorous culture, and playing games with latahs provides an outlet for their intense emotions.
The 1994 DSM-IV, the ﬁrst to include Asperger’s, also included latah, calling it a culture-bound syndrome: that is, a mental disorder that appears to be created by purely cultural rather than pathological forces. In my view, latah does have a biological basis and may be either a psychomotor epilepsy or a form of Tourette’s syndrome. The biology may be similar, but culture may determine how it is expressed.
Recently, we have learned a lot about this kind of complex interaction between biology and environment. For example, a 2002 study by Avshalom Caspi and his colleagues at King’s College in London concluded that genetic factors may help explain why some children who are mistreated grow up to victimize others, while other children, raised in the same bad environment, do not. Abused children with a gene that directs a high level of expression for a particular brain enzyme known as monamine oxidase A (MAOA) were less likely to become antisocial and violent. This suggests that both groups of children, if raised in a nurturing environment, would be likely to become good citizens, but if abused as children, those with one genotype were more likely to become good citizens than those with a different genotype. Both genes and the environment affect what we become.
How well an adult with Asperger’s will ﬁt into society will be partially determined by access to opportunities as a child to develop and use his talents. Osborne laments: “As the idea of genius has become increasingly discredited in a wider culture, it has simultaneously become increasingly medicalized. Talking to American graduate students, I often hear the casual remark: ‘There’s no such thing as genius; great men don’t exist...’ It’s a sentiment that appeals to American notions of equality. It is equality that is [viewed as] normal, not genius.”
MAKING A CONTRIBUTION
Although Osborne states “I have never had Asperger’s syndrome,” he frequently characterizes his interests and patterns of behavior as “Aspergerish.” Indeed, his obsessions with always staying at a Red Roof Inn, watching the Iron Chef cooking show, and walking in a certain way around lampposts are very Aspergerish. As I read American Normal, it became clear to me that it could be seen as Osborne’s quest to ﬁnd out more about his own kind. Osborne is a journalist who has written frequently for the New York Times and Slate. I have met many reporters with Asperger’s traits and think that news reporting is a good job for them because it requires them to pay careful attention to details.
Many hidden Asperger people are functioning well in their careers; I have interacted with them professionally. There is no way to turn a person with Asperger’s into a social being; he can only learn social survival rules and work to understand Asperger’s. I will always be a technical person who is more interested in science than in being social, and I have had to learn that I am from a land where people learn by logic and have few social instincts.
The world needs the Asperger’s people. After all, the social people who sat around the campﬁre talking were probably not the makers of the ﬁrst stone spear. It is also likely that the most social people did not create the great culture of our civilization, such as literature, art, engineering, music, science, and mathematics. Genetics and biology provide the world with different kinds of minds. Whether or not these minds make great contributions to society is determined by both biology and the environment.
From American Normal by Lawrence Osborne ©2002 by Lawrence Osborne. Reprinted with permission from Copernicus Books.
There were three little boys inside, and Nicky was the oldest. As soon as I saw him, I thought to myself “He’s one of them. A classic Asperger boy.” And indeed he was. Delicately unassuming, introspective, with huge blue eyes swimming behind professor spectacles. He shook my hand and told me gravely that he had no friends at school. I noticed at once that he had a slight, well, foreign accent—or rather a faint trace of one.
“It’s true,” said Trina. “Up to the age of five he had a kind of Swedish accent. People thought he was Swedish.”
At first, however, they thought he was deaf. Baby Nicky would never respond to his name being called, and although he’d memorize words instantly when he was a tot, he barely spoke. Trina took him to a speech therapist. The therapist was nonplused. Nicky couldn’t speak easily, but he certainly knew all the names of cars, planets, and moons, the distances between the sun and every known planet and moon in the solar system as well as the exact circumference of each of the latter. The Werners thought they had a little genius, but not an autistic one. After Nicky skipped kindergarten, he began to cause small, almost subtle disturbances at his school. He had to take things apart and see how they worked. He’d drop sticks into the water tank to see how the ripples played out. Again and again, an annoyed principal summoned him to the office. It’s much the same story with Asperger children: a wayward, solipsistic individual of high intelligence pitted against an inflexible system that cannot accommodate the odd, the not quite socialized, the defiant, or the mildly uncooperative, or even the slightly anomalous. It’s a recipe for war, or at the very least for disruption and classroom disorder. The Werners had therefore decided to home school, and it seemed likely that Nicky was thriving with it, as most children do now. He already scored in the ninety-ninth percentile in his SAT 9 test.
We went into his bedroom. The desert comes right up to the housing development, and through his bedroom window I could see sand and cactus. The room was scrupulously neat. On its walls hung a small boy’s obsession with outer space—an astronaut’s dried ice-cream sandwich packet, A View of Earth From Space—along with a shelf of meticulously arranged mineral and shell specimens that Nicky proceeded to identify with his professorial calm: iron pyrites, abalones, quartz, pine cones, opals, and lumps of mica. Each was carefully posed as if in a display at the Natural History Museum. We looked through his equally neat rows of books. The odd Sherlock Holmes and Treasure Island, but mostly fact books on the natural world, things like the National Geographic Guide to Seashore Life or Insects. Then Nicky brought out the printed version of Thoughts. As we leafed through the handsome drawings and dreamy haikus, I asked him if he liked living in the desert.
“I like the heat,” he replied.
And what about the air force base? Did he know all about planes?
“Some of them. When I grow up I'll be an astronaut.”
At the end of the book there was indeed a four-line bio which read: “When he grows up Nicholas wants to be an astronaut, get out of this place and live somewhere else.” Was that how he felt? I asked. “Sure,” he said. “Get out of this place—planet earth— and live somewhere else.”
Then he asked me, “Do you like reading poems?”
I said that I did it all the time. It felt like a confession of a dubious habit, which nowadays it no doubt is.
“Short or long ones?”
I'd never thought about the issue quite that way. “Short, I suppose.”
“Me too. Short is best.” He fixed me in his drilling gaze, a complete inversion of the usual Asperger eye-avoidance. “What about Harry Potter?”
“Not really my thing.”
“Harry Potter’s almost as interesting as math.”