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What Is Autism?

groopman_1-060613.jpg
Emily L. Williams
Emily L. Williams: Popularity, mixed media collage, 2008; from the book Drawing Autism, a collection of work by more than fifty artists with autism. Edited by Jill Mullin and with an introduction by Temple Grandin, it will be published in a new edition by Akashic Books in 2014.

I never learned to type. The best I can do is hunt and peck with two fingers while looking at the keyboard. Instead of touch-typing, I was taught how to work with metal: shape flashings, solder wires, drill into tin. Learning such skills traces back to the fifth grade at Public School 187 in Queens. My teacher, Mrs. L., divided the class into those able to undertake a so-called “academic curriculum” and ultimately attend college, and those like me, only fit for vocational training, destined to work in factories or repair shops.

Mrs. L. was a squat, middle-aged woman with a dour mien. She made clear to us what marked a promising student: neat penmanship, proper posture, and sharp attention to her lessons. It did not take her long to conclude that I lacked all of these indicators.

I spent much of the class day looking out the window at our concrete playground, dreaming about stickball games, watching in my mind’s eye a Spaulding rocket far beyond the outfield. When not occupied with home runs, I studied a girl with a pageboy cut and a fetching smile. I swiveled in my seat and scratched my chair on the linoleum floor in an attempt to get her to look at me. Instead, all I got were sharp reprimands from Mrs. L. Moreover, my handwriting was poor. It didn’t seem worth the effort to perfect a capital J or G, with all of the curlicues of Parkman script. When the bell rang at 3:00 PM, I vaulted through the door, racing to the playground where sides were quickly chosen for the stickball game.

The first parent–teacher conference was held at the end of September, and Mrs. L. rendered her judgment. “He is not college material,” she said flatly to my mother and father. A brief listing of all of my deficiencies followed, including shifting in my seat, looking out the window, making noise with my chair, and sloppy penmanship. I lacked intelligence, motivation, and focus. Such pupils were best served by learning a trade. So it would be metal shop instead of typing class.

My parents listened quietly to Mrs. L.’s assessment. After they left, my father turned to my mother and offered a different conclusion: “He has shpilkes.” My mother nodded knowingly. Shpilkes is a Yiddish word that denotes “ants in your pants.” The restless traits I displayed in the classroom were familiar from my behavior at home. As far as my parents were concerned, shpilkes was nothing out of the ordinary for a boy in fifth grade, except that perhaps I had more of it than others.

The first day of the sixth grade proved very different. Mrs. Beverly Bernstein was my teacher, a tall, stately woman with raven hair pulled into a tight bun. Instead of opening class with a practice session of Parkman script on lined paper, she initiated a discussion of “current events.” What did we think of our young president, JFK? Did it really make sense to huddle under our wooden desks when we drilled for a nuclear attack? And what exhibits would we want to visit at the upcoming World’s Fair, hosted in our borough not far from where the Mets would play?

All of her questions were unexpected and provocative. And she seemed sincerely interested in our answers. When I raised my hand and offered a thought, the enchanting girl turned to look in my direction. It soon occurred to me that the playground would still be there at the end of the school day. And Mrs. Bernstein’s red ink on my assignments did not cross out my misshapen letters as Mrs. L.’s had, but rather made critical comments on my work. With her encouragement, my grades improved. Then we all took a standardized examination and I scored very high. The test result coupled with Mrs. Bernstein’s recommendation proved sufficient for me to change tracks. I learned early the danger of rigid predictions about one’s mind and its potential.

Brain and behavior, how they are shaped by biology and environment, and the capacity of children to change are central to the story of Temple Grandin. A professor of animal science at Colorado State University and a successful businesswoman, Grandin is one of our most astute interpreters of autism. (As we shall see, the definition of autism is for her a matter of controversy, but she would probably agree that what is referred to as the Autism Spectrum Disorder includes, in the most general sense, children who have mild to severe impairments in nonverbal social interaction with other persons, or in social communication, or both. It also includes what Grandin describes as “repetitive behaviors and fixated interests.”)

The first signs that Grandin was autistic began at six months of age when she seemed to resist her mother’s embrace. Her ears, she recalls in her autobiography, Emergence, seemed to amplify sounds that were excruciating, and certain fabrics resulted in painful itching. By the age of three, she acted in uncontrolled ways, playing with her feces and smearing them on the walls of her bedroom, chewing on her toys, and throwing vases in fits of temper. At other times, she would fixate on an object, oblivious to the world. Observing that she lacked speech and demonstrated such violent and obsessive behaviors, her mother took her to a neurologist, who made the diagnosis and suggested she might require life-long institutionalization.

We have come a long way from the view that the “refrigerator mother” was the cause of autism, an early notion that absence of maternal warmth resulted in offspring who lacked understanding of others’ thoughts and feelings. Indeed, Grandin’s mother responded to her extreme behaviors with not only great warmth but also keen intelligence and determination. She sought out social settings and schools where her unusual and difficult daughter might mature. Grandin also greatly benefited from Mr. Carlock, a teacher in a New England private school, who helped her channel her intense fixations into productive projects.

Oliver Sacks wrote about Temple Grandin in An Anthropologist on Mars. He noted how the publication of Emergence raised suspicions. The autistic mind, Sacks wrote,

was supposed at that time…incapable of self-understanding and understanding others and therefore of authentic introspection and retrospection. How could an autistic person write an autobiography? It seemed a contradiction in terms. When I observed that the book had been written in collaboration with a journalist, I wondered whether some of its fine and unexpected qualities—its coherence, its poignancy, its often “normal” tone—might in fact be due to her.
Such suspicions have continued to be voiced, in regard to Grandin’s book and to autistic autobiographies in general, but as I read Temple’s papers (and her many autobiographical articles) I found a detail and consistency, a directness, that changed my mind.

Nonetheless, Sacks concluded, “autistic writers seem to get “out of tune” with their readers, their work marked by “peculiar narrational gaps and discontinuities, sudden, perplexing changes of topic….”1

The Autistic Brain, however, does not suffer from the disjointed narrative of Grandin’s earlier work. Instead, there is fluid prose and a logical connection among its diverse topics. Moreover, in this new book, Grandin has reached a stunning level of sophistication about herself and the science of autism. Her observations will assist not only fellow autistics and families with affected members, but also researchers and physicians seeking to better understand the condition. They seem to me so helpful that I will quote some of them here.

Grandin begins with concise descriptions of familiar aspects of her mind, such as how difficult it is to interpret facial cues and interact with those who are not afflicted with neurological disorders, described as “neurotypical.”

What a neurotypical person feels when someone won’t make eye contact might be what a person with autism feels when someone does make eye contact…. For a person with autism who is trying to navigate a social situation, welcoming cues from a neurotypical might be interpreted as aversive cues. Up is down, and down is up.

But she then shifts to a deeper assessment of what current science does and does not explain about such characteristics. She is particularly skeptical of functional MRI scanning, emphasizing that the technology offers no more than a narrow window into the dynamic nature of the autistic brain. Grandin, who suffers panic attacks, describes how her own scan revealed that her amygdale, a brain region associated with anxiety, was larger than expected:

Even when researchers do think they’ve found a match between an autistic person’s behavior and an anomaly in the brain, they can’t be sure that someone else manifesting the same behavior would have the same anomaly. Part of the title of a 2009 autism study in the Journal of Neurodevelopmental Disorders captured the situation succinctly: “Same Behavior, Different Brains.” In other words, just because you’re prone to extreme anxiety doesn’t mean your autistic brain has an enlarged amygdale…. Conversely, when researchers find an anomaly in the brain, they can’t be sure that that anomaly will have the same behavioral effect in a different brain. Or any effect, for that matter.

She emphasizes how a scan finding that is touted as profound can prove to be trivial owing to a flaw in methodology:

Neuroimaging also requires subjects to keep their heads still. In recent years, several studies reported that short-range connections in the brain weaken as children grow older, while long-range connections strengthen. Neuroscientists considered this news to be quite a significant advance in understanding of the brain’s maturation process. Unfortunately, a follow-up study by the authors of the original studies showed that the supposed changes in the brain’s development disappeared once they took head movement into account. “It really, really, really sucks,” the lead investigator said. “My favorite result of the last five years is an artifact.”

Attentive to a lay audience that may not share her background in biology and psychology, Grandin casts her critiques in accessible metaphors:

Researchers also can’t assume that if a patient is exhibiting abnormal behavior and the scientists find a lesion, they’ve found the source of the behavior. I remember sitting in a neurology lecture in graduate school and suspecting that linking a specific behavior with a specific lesion in the brain was wrong. I imagined myself opening the back of an old-fashioned television and starting to cut wires. If the picture went out, could I safely say I had found the “picture center”? No, because there are a lot of wires back there that I could cut that would make the TV screen go blank.
…The picture depends not on one specific cause but on a collection of causes, all interdependent. And this is precisely the conclusion that researchers in recent years have begun to reach about the brain—that a lot of functions depend on not just one specific source but large-scale networks.
So, if you ever hear that fMRI can tell us people’s political preferences, or how they respond to advertising, or whether they’re lying, don’t believe it. Science is nowhere near that level of sophistication yet—and may never be.

Another prominent focus of current research is the search for “autism genes.” Scientists speculated that so-called copy-number variations, or CNV—duplications, deletions, or rearrangements of DNA—acquired after conception and altering gene function, might prove to be the key to unraveling the condition. Alas, the results from a 2007 publication in Science revealed that the DNA changes were highly diverse:

In the following five years, this paper, “Strong Association of De Novo Copy Number Mutations with Autism,” would be cited more than 1,200 times. The hope that autism could be traced to one or even a few gene variations became less and less realistic…. By 2012, geneticists had associated ASD with hundreds of copy number variations.
Further complicating the research was that many of the CNVs seemed to be, if not unique, at least extremely rare. The authors of the 2007 Science paper seeking to link de novo mutations with autism had noted: “None of the genomic variants we detected were observed more than twice in our sample, and most were seen but once.”

Grandin also examines current views of how the autistic brain may be wired, and attempts to reconcile differing models:

A highly influential paper published in Brain in 2004 introduced an underconnectivity theory—the idea that underconnectivity between cortical regions might be a common finding in autism. On a global scale, the major sections of the brain can’t coordinate their messages. Since then, numerous other studies have made the same argument, finding a relationship between underconnectivity between cortical areas and deficits in a variety of tasks related to social cognition, language, and executive function.
In contrast to this long-distance underconnectivity, other studies have found overconnectivity on a local scale. Presumably, this overgrowth occurs in…an attempt of one part of the brain to compensate for a deficit in another. The result can be positive. As I’ve mentioned, I exhibit overconnectivity in an area corresponding to visual memory. Fortunately I can manage the visuals. I can sit at a consulting session and run the movie in my mind of how a piece of equipment will work, and then I can turn it off when I’m done. Some people with autism, however, don’t have an Off switch that works, and for them, overconnectivity leads to a barrage of information, much of it jumbled.

In his State of the Union address on February 12, the president mentioned neuroscience as a priority, and the Obama administration recently launched a “human brain mapping project” akin to the Human Genome Project. Grandin suggests that such research should be guided in part from the experiences of those with neuropsychiatric conditions:

In 2011, I contributed an article to a big scholarly book on autism. More than fourteen hundred pages. Eighty-one articles in all. Guess what. The only paper that addressed sensory problems was mine.
Over the decades I’ve seen hundreds if not thousands of research papers on whether autistics have theory of mind—the ability to imagine oneself looking at the world through someone else’s point of view and to have an appropriate emotional response. But I’ve seen far, far fewer studies on sensory problems—probably because they would require researchers to imagine themselves looking at the world through an autistic person’s jumble of neuron misfires. You could say they lack theory of brain.
…When I look back on where autism was sixty years ago, when my autistic brain was creating great anxiety in Mother, curiosity in doctors, and a challenge to my nanny and teachers, I know that trying to imagine where we’ll be sixty years from now is a fool’s errand. But I have confidence that whatever the thinking about autism is, it will incorporate a need to consider it brain by brain, DNA strand by DNA strand, trait by trait, strength by strength, and, maybe most important of all, individual by individual.

Grandin does not merely discuss science in The Autistic Brain, but offers counsel to families whose children behave in trying ways. She is particularly concerned about the affixation of labels and generic advice, which has evolved from Mrs. L.’s “not college material” and placement in metal shop to clinical categories:

Parents come up to me all the time and say things like, “First my kid was diagnosed with high-end autism. Then he was diagnosed with ADHD [Attention Deficit Hyperactivity Disorder]. Then he was diagnosed with Asperger’s. What is he?”2
I understand their frustration. They’re at the mercy of a medical system that’s full of label-locked thinkers. But the parents are part of the system too. They’ll ask me, “What’s the single most important thing to do for an autistic kid?” Or “What do I do about a kid who misbehaves?” What does that even mean?
I call this kind of thinking label-locked because people get so invested in what the word for the thing is that they no longer see the thing itself.

These labels are devised by the expert committees that issue the Diagnostic and Statistical Manual of Mental Disorders (DSM), the standard guide used by psychiatrists, psychologists, and many others. In May, the new criteria of the DSM-5 will be codified, and Grandin minces no words in her displeasure with the draft:

In the DSM-IV, a diagnosis of autism depended on three criteria, called the triad model. Those criteria were:
• Impairment in social interaction.
• Impairment in social communication.
• Restricted, repetitive and stereotyped patterns of behavior, interests, and activities.

Now, in the recently released DSM-5, there is a dyad:

• Persistent deficits in social communication and social interaction.
• Restricted, repetitive patterns of behavior, interests, or activities.
…What isn’t scientific about the DSM-5’s handling of the diagnostic criteria, however, is collapsing together social interaction and social communication. Social interaction covers nonverbal behavior that involves being with another person—making eye contact, smiling, and so on. Social communication covers the verbal or nonverbal ability to converse—sharing ideas and interests, for example. Do impairments in social communication and impairments in social interaction actually belong to one single domain? Does an inability to get words out and master grammar and syntax…really come from the same place in the brain as a tendency to speak with abnormal intonation and give conversational responses that are socially inappropriate…? Are language mechanics and social awareness closely related, neurologically speaking? I doubt it—and I’m not alone in that doubt.

The change in criteria is not merely a nosological issue but has profound sociological consequences:

What about the previously undiagnosed Aspies [those with Asperger’s Syndrome] who meet only the social half of the new dyad criteria—deficits in social communication and interaction but not in repetitive behaviors and fixated interests? They’ll find themselves in another subcategory altogether: communication disorder. Specifically, they’ll find themselves receiving a diagnosis that’s new to the DSM: social communication disorder. Which is, basically, autism without the repetitive behaviors and fixated interests. Which is, basically, rubbish. (To my way of thinking, social impairments are the very core of autism—more so than the repetitive behaviors.) So having the diagnosis of social impairments that’s distinct from the diagnosis of autism is the same as having a diagnosis of autism that’s distinct from the diagnosis of autism!
…Second, these diagnoses overlook the gifted but frustrated—the typical Aspie or high-functioning autistic who is laboring in a non-sympathetic environment. Consider the oppositional defiant disorder diagnosis: “The disturbance in behavior causes clinically significant impairment in social, educational, or vocational activities.” I guarantee you that if you take a third-grader who can read high-school math texts and make him do baby-math drills over and over and over, he will turn oppositional defiant—because he’s bored out of his mind.
…What practical effects will these diagnostic changes have? Will people who were labeled Asperger’s and are now labeled autistics experience a different response from the world? From themselves? How will these changes affect insurance coverage? What about social services? Autistics have more problems than those with Asperger’s; will they still get the same range of help as before? That question will be decided on a state-by-state basis, but these changes have opened a Pandora’s box of possibilities.

A leading child psychiatrist told me that he was critical of parents who contend that schools should be responsive to different types of children and that they should be flexible enough to accommodate both those who persistently tackle a project and those who refrain from participating in a group activity. For that psychiatrist, such views reflect the narcissism of modern mothers and fathers.3 To be sure, there cannot be an infinite number of options offered during the class day, and all of us must learn to modify our behavior to conform to social norms. Grandin is clear about the need for high-functioning autistics like herself to learn how to respect certain social imperatives. But unforgiving and rigid environments that provide no place for individual interests and energy can snuff out a person’s future.

Grandin argues that society largely functions based on self-interest, and “Aspies” may make unique contributions. She cites “all the undiagnosed Asperger’s cases in Silicon Valley.”

Being on the spectrum isn’t what defines them. Their jobs define them. (That’s why I call them Happy Aspies.)
Some people, of course, will never have that opportunity. Their difficulties are too severe for them to cope without constant care, no matter how hard we try.
But what about those who can cope? And what about those who can’t cope but who can lead more productive lives if we can identify and cultivate their strengths? How can we turn the plasticity of the brain to our advantage?
…By cultivating the autistic mind on a brain-by-brain, strength-by-strength basis, we can reconceive autistic teens and adults in jobs and internships not as charity cases but as valuable, even essential, contributors to society.

The Autistic Brain convincingly speaks to a nuanced understanding of people with autism, and the imperative of situating each person in as productive an environment as possible. The need is hardly small, in view of recent surveys from the Centers for Disease Control estimating one in 50–80 children are “on the spectrum of autism.”4

  1. 1

    Oliver Sacks, An Anthropologist on Mars (Knopf, 1995), p. 253. 

  2. 2

    Asperger’s Syndrome, as a recent summary put it, differs from some other disorders in the autism spectrum by its “relative preservation of linguistic and cognitive development.” 

  3. 3

    See my “The Doubting Disease: When Is Obsession a Sickness?” The New Yorker, April 10, 2000, and “What’s Normal? The Difficulty of Diagnosing Bipolar Disorder in Children,” The New Yorker, April 9, 2007. 

  4. 4

    See Stephen J. Blumberg et al., “Changes in Prevalence of Parent-Reported Autism Spectrum Disorder in School-Aged US Children, 2007 to 2011–2012,” National Health Statistics Reports, No. 65 (March 20, 2013); and Jan Hoffman, “Parental Study Shows Rise in Autism Spectrum Cases,” The New York Times, March 21, 2013. 

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