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What Is Autism?

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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.
  1. 1

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

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