"The Ghost in the Cell," by Scott C. Johnson. Published by Matter. Available via Web, ePub, Kindle. $.99.
Reviewed by Annalee Newitz
It's a prize that scientists have sought since the early nineteenth century: a biological marker that predicts violent behavior in humans. In the 1830s, phrenologists believed head bumps could reveal a criminal personality -- often, prostitutes and the poor were said to have bumps that marked them as deviants from birth. But today, it seems this pursuit may have moved beyond the realm of pseudoscience.
Thanks to recent discoveries, we have evidence that the genes of abused children are marked by the experience. Over time, these effects leave them prone to depression and make it harder for them to control their violent impulses. Could we be on the cusp of discovering a scientific approach to a social problem? In an essay for Matter magazine, former war correspondent Scott C. Johnson suggests that we are. Unfortunately, Johnson fails spectacularly to explain the complexity of this problem, and winds up telling a story that distorts both the science and the reality of abuse in many people's lives.
Asperger
Love: Searching for Romance When You're Not Wired to Connect by Amy Harmon. A New York Times/Byliner Original. Available for Kindle, iPad, Kobo, and Nook, $2.99.
And Straight On Till Morning: Essays on Autism Acceptance, edited by Julia Bascom. Published by the Autistic Self-Advocacy Network. Available for Kindle, $2.99.
Reviewed by Steve Silberman
In the early 1990s, a mother told a conference of autism
professionals that the upside of having a teenager on the spectrum at home is that
they will never want to do the things that often get kids in trouble. There will
be no need for awkward conversations about sex, because people with autism are
either uninterested in or incapable of intimacy. Parents won't have to worry
about a late-night knock on the door from the local sheriff, because autistic teens
have no desire to party. If these generalizations now seem naïve, offensive, or
some combination of the two, this mother had a lot of company in her assumptions.
The notion that people on the spectrum are disinclined to seek connection with
others is embedded in the very word autism,
which is derived from the Greek word for self, autos.
One of the world's leading
authorities on the subject, psychologist Tony Attwood, devotes only a handful
of pages in his Complete Guide to
Asperger's Syndrome to sexuality and relationships. Specifically, there are
two references to "lack of desire," four to pornography, two to
exploitation by predators, and two to celibacy. Casting a further chilling
effect on the notion of romance, Atwood cautions potential suitors that people on
the spectrum may find a friendly touch on the arm "unpleasant and even
difficult to tolerate, let alone enjoy" because of sensory sensitivity,
and compares embracing an autistic partner to "hugging a piece of
wood." This is the historical backdrop that looms -- albeit invisibly to
most readers -- behind the publication of a new ebook by Pulitzer prize-winning
New York Times reporter Amy Harmon, Asperger Love: Searching for Romance When
You're Not Wired to Connect.
The book ably and lucidly details the story of the trial of the man who carried out the world’s deadliest mass shooting by a single individual. It’s full
of twists and turns, with Orange expertly doling out the suspense as to whether the killer will ultimately be declared sane or not. But it lacks the
context and analysis I’d hoped to find in an account of an event in which psychiatry faces off against what can only be called evil.
Orange, a foreign correspondent for the UK’s Daily Telegraph, covered Breivik’s trial after the Norwegian right wing ideologue killed 8 people in bomb
attacks on government buildings in Oslo, then gunned down 69 people, mostly teens, who were attending a political youth camp in July 2011.
Breivik claimed he committed the attacks to “save” Norway from Islam, multiculturalism, “cultural Marxism” and feminism. Initially, a psychiatric report by
two of the country’s leading experts claimed that he had paranoid schizophrenia.
Their evidence for this diagnosis was his apparently false claims about being connected to a larger terrorist network, his self-bestowed medals and
handmade military “uniform” and his belief that he had the right to kill for his ideas. These were seen as “delusions,” which occurred after a period of
social withdrawal before the attacks and his rants were said to contain “neologisms” or made-up words, additional evidence of disordered thinking.
According to the initial report, these factors were apparently enough to qualify Breivik for a diagnosis of schizophrenia under the ICD 10, which is the
international medical diagnostic manual and is similar in its psychiatric classifications to the DSM.
“His political world exists just to have a world to be psychotic in,” one of authors of the report testified.
But after the report was leaked, experts on the far right argued that Breivik’s “neologisms” were actually common terms used by others with similar views,
making the diagnosis controversial. The ICD criteria apparently require that schizophrenic beliefs be “culturally inappropriate,” and the fact that the
other far right groups he saw as his peers had similar views called that into question.
Breivik was surprisingly insightful about this paradox: “What I think is that [they] could not believe that a normal person could do such a thing. A
person who does something so terrible cannot be normal. He must be sick.”
After widespread outrage, a second report was ordered. This time, a new group of professionals determined that Breivik had not been psychotic
while carrying out the attacks. The second report accepted that his ideology and resulting actions, while clearly despicable, were not in and of themselves
evidence of psychosis.
But there was still disagreement among the experts who testified as to what Breivik’s diagnosis— and everyone agreed that there should be one— actually
was. Breivik had been diagnosed with an autism spectrum disorder as a child because of his “pedantic” ways and obsessive compulsive behavior, so one
psychiatrist suggested that this led to his “lack of empathy.”
However, a psychologist disagreed with the accuracy of that diagnosis, testifying that during an evaluation, Breivik was “polite and friendly and seemed
empathetic.” One of Brievik’s childhood friends had called him “one of the most sociable people” that he knew.
Other psychiatrists argued that Brievik’s real problem was a personality disorder— either narcissistic personality disorder or antisocial personality
disorder, probably well into psychopathy— or some toxic combination of the two, along with his racist ideology.
Mind of a Madman,
however, does not provide readers enough context to draw conclusions about Breivik's true state of mind. It does not include the ICD diagnostic criteria or give any background information
about conditions like personality disorders, schizophrenia and Asperger’s. As a result, it’s very difficult to weigh the battling
reports and conflicting testimony. The book doesn’t mention that autism
spectrum disorders are not linked with violence, nor does it explore the
controversy over the link between schizophrenia and violence. It also fails to examine the question of empathy itself. This quality is critical to several of the diagnoses and seems to have been misunderstood by some of those who testified, incorrectly claiming that autistic people always lack empathy.
While this probably reflects a newspaper journalist’s attempt to be “objective” and simply detail the (most certainly compelling) story of the trial, it
left me frustrated. Underneath this story is a tale of the ongoing problems with our current system of psychiatric diagnosis and the lack of objective
measures available to characterize mental illness. There’s also a story about why some diagnoses— like schizophrenia— are seen as mitigating, while others—
like personality disorders— are seen as aggravating. And of what brain science suggests about moral responsibility.
Moreover, there’s also an untold story of a country which is not bent on vengeance even after such an unimaginable crime, a country that would have
accepted either an insanity verdict or the one that came down, which found Breivik morally responsible and sentenced him to 21 years, a sentence that can
and likely will be extended if he is still found dangerous at that time.
Of course, a short ebook may not be the place for such depth, but some basic facts about diagnosis and the controversies it evokes would have been
extremely useful. There’s certainly room for greater exploration of the Breivik case in light of these distressingly frequent events— and especially for an
examination of the role of culture, psychiatric ideas and varying legal systems so that we can become better at preventing or dealing with them.
In The Wrong Hands, by Ryan Gabrielson, California Watch/Center for Investigative Reporting. $.99, Kindle Single.
by Deborah Blum
For well over a year, the investigative reporters at California Watch (part of the non-profit center for Investigative Reporting) have been pursuing a story involving abuse of mentally ill patients in state care - and of institutional indifference to that abuse.
That investigation, led by Ryan Gabrielson, focused on five state operated centers that house "some of society's most vulnerable citizens - men and women with severe autism, cerebral palsy and other intellectual disabilities living in taxpayer funded institutions." To sum up the results, it found that center residents had been beaten, tortured and raped by staff members. And that a police force, set up to protect resident safety, had apparently helpfully looked the other way.
The stories, first detailed in a series called Broken Shield, are best described as horrifying, a litany that includes the taser burning of a dozen patients, the rape of others, and the death of a quadriplegic patient with cerebral palsy, who died of internal bleeding after three cotton-tipped swabs tore through his esophagus. None of these incidents, as the investigation makes clear, were thoroughly evaluated by the well-paid police force assigned to those centers. In many cases, including the worst ones, no charges were filed.
There's another interesting issue here--the platforms which California Watch used to tell this story--but I'd rather start by considering its importance, its indictment of the way we care for helpless and troubled people, in particular the system in California. And to acknowledge that I'm not alone in this reaction. Everyone from newspaper readers to state officials was appalled. The stories prompted major reorganizations of centers, investigations by outside experts, and new legislation, signed by Gov. Jerry Brown, mandating far stricter law enforcement oversight. This month, the state agreed not to seek Medicare reimbursement for care at the most troubled centers. This is a story that matters, one of the reasons I wanted to bring it up here.
These powerful changes are foremost a result of really powerful reporting. But California Watch also amplified that effect by making sure that its findings were heard across multiple platforms. The stories were placed on its website. They were distributed to newspapers across the state, running in all eight of the state's largest newspapers. They were showcased on radio programs, partly through the center's partnership with KQED. Videos were provided to television stations. California Watch even produced a graphic-novel style video, which illustrated the trauma suffered by patients and their families.
And in December, the Center for Investigative Reporting published the series as a 99-cent Kindle single titled In the Wrong Hands: How a Police Force Failed California's Most Vulnerable Citizens. In one sense, the single is perhaps the least impressive part of this approach. It's a workmanlike summary of the original series rather than a uniquely good e-publication in its own right. The story-telling remains in a basic newspaper format; there's a puzzling lack of illustration, audio, video or really anything would bring additional life to the telling.
This is less of a problem in a gorgeous narrative or exceptionally fun-to-read story. But this is neither of those things. In the Wrong Hands reads like what it is --a repackaged newspaper series rather than a well-articulated book. It's dense enough and dark enough to occasionally be a challenge to read--exactly the kind of story that benefits from other kinds of media--perhaps even some of California Watch's own novelistic video. I suspect that with a little more time and care, this could have been a more substantial and more meaningful e-single, one that would have reached an even wider audience (when I checked on January 21, its Kindle single standing was 364,414).
I respect--and even admire--the California Watch model for distributing news and for solvency in a digital age (briefly outlined here at the Nieman Journalism Lab). But as someone who also has hopes for the e-publishing age that we are growing into, I'd like to argue for setting a high professional standard for e-books, both short and long, one that really moves them beyond old-time print. If we're building a new model of story telling then there's nothing wrong wanting it to be a really good one.
And, after all, a great investigation--which In the Wrong Hands was--deserves a great platform.
Deborah Blum, author of The Poisoner's Handbook, published her first e-single, Angel Killer, last year. She writes for numerous publications, blogs about chemistry at Wired, and teaches journalism at the University of Wisconsin-Madison.
Angel Killer, by Deborah Blum (The Atavist, October 2012). Available via The Atavist app and for Kindle.
Reviewed by Annalee Newitz
With the essay Angel Killer, science historian Deborah Blum (a DTU editor) takes us into the disturbing world of Albert Fish, a serial killer who raped, murdered and ate perhaps dozens of children in New York City during the 1920s. But this essay is more than an elegant true crime story of atrocious transgression and dogged detection. It exposes the origins of a clash between the scientific and religious approaches to punishment, by reminding us of the most important aspect of the Fish case. Generally, the "Gray Man," as he was nicknamed, is remembered for his ghoulish crimes against children -- and himself, as he was fond of driving needles into his groin. In Angel Killer, however, Blum makes the case that his trial is what should go down in history. It was the first high-profile trial where psychologists argued that a murderer should not get the death penalty for reasons of insanity.
Though we hear the phrase "not guilty by reason of insanity" a lot in fiction, Blum points out that in reality it is not generally a successful plea. Even today, very few criminals are found to be insane, even when they've done things that are as beyond the pale as Fish's cannibalistic rituals. By retelling the story of Fish and the society that condemned him to death, Blum is able to explore one of the areas where scientific reason is most often swept aside for an Old Testament notion of "eye for an eye" justice. Though judges, juries, and even psychologists knew that a child killer like Fish was in fact insane and therefore unable to distinguish between right and wrong, they could not bring themselves to treat him the way psychology would demand. Instead of offering him treatment, Fish's peers resorted to an ancient and ultimately superstitious notion that he was simply evil and therefore should be struck down by the state for his acts.
Though we can see the war between scientific and religious ideas of transgression slowly building throughout Blum's essay, she never beats the reader over the head with socio-political analysis. Instead, she allows the story to speak for itself. One of the most intriguing characters to emerge, other than the mysterious Fish, is the psychologist who worked most on the killer's case. That was the young Fredric Wertham, who became famous in the 1950s for arguing that violent and sexual images in comics were inspiring juvenile delinquency in his book The Seduction of the Innocent. Wertham, who worked with many of New York's poorest populations, was eager to take on Fish's case because he was all too familiar with how little attention was usually paid to the sorts of working class and impoverished families who had lost their children to Fish's knife.
Wertham was also oddly sympathetic to Fish. After hours of interviews with the jailed killer, Wertham became convinced that Fish was absolutely insane. Aside from his known crimes, Fish also spoke to angels, mutilated himself, and had religious delusions about becoming a god. He'd even been committed to asylums a couple of times, once by his own daughter. Wertham wanted to find out how such a man could have been in and out of mental institutions without anyone ever noticing that he was violently unstable. In court, Wertham argued that Fish could not have understood that his crimes were wrong, and that he deserved life in a mental institution rather than the electric chair.
What emerges from Blum's tale of Wertham's court battle is a profound sense of our struggle as a culture to deal scientifically with mental illness. Most people fundamentally believe that criminals like Fish are "bad" and "evil" and should therefore be killed. Psychologists today still fight to convince juries and the public that some criminals have damaged minds, shaped by horrific circumstances. Fish's story, which begins with his abusive childhood in an orphanage, is a classic tale of a troubled person who was neglected and mistreated by the very institutions that were supposed to aid him. Even the psychologists who saw him as an adult, and knew about his profound delusions, released him onto the street because he was "sane enough." Instead of recovering, Fish only sank more deeply into madness.
Blum's essay is available via the Atavist app, whose enhancements make the experience of reading almost cinematic. The story begins with a haunting 1920s-era film of Staten Island ferries docking in downtown Manhattan, set to period music. Maps of the crime scenes walk us through the early twentieth century streets of New York City like we were cops on the beat. And Blum treats us to snapshots of the screaming headlines about Fish's murders and trial, which help us understand how his crimes were depicted at the time. At one point, we have the opportunity to pull up a creepy letter that Fish sent to the mother of one of his victims (complete with a warning that it may be too graphic for some readers). The multimedia extras never feel extraneous, and aid enormously with the historical scene-setting required here.
Ultimately Angel Killer is not a story of crime -- it is a story of how we understand crime. More than that, it is about how science has the opportunity to change profoundly the way we treat both criminals and the mentally ill. The tragedy is that when it comes to human atrocity, science often fails to persuade us and superstition takes over. Albert Fish was killed in the electric chair at Sing Sing in 1936.
I
won’t lie: I didn’t much like Sam
Harris’ ebook Lying, and had I paid
money for it rather than received it as a free download, I might have felt
cheated. While I’ve enjoyed some of his
earlier work, this book felt flimsy and overly simplistic.
Harris
offered the free download when Jonah Lehrer’s deceptions were just beginning to
be seen as part of a larger pattern:
many of my colleagues felt that this was a cheap shot and an obnoxious
type of self-promotion, but I wasn’t offended and thought it might offer
insight into Lehrer’s deceit.
I
was wrong: what we have here is a book
that tries to make the case that lying is virtually always wrong, with little
more nuance than a “Just Say No” campaign.
The few scraps of science that are included— for example, a studies
showing that one tenth of the information shared by husbands and wives involves
deceit, and a full 38% of conversations among college students include at least
one lie— are fascinating.
But
they go nowhere. Given the high level of
deception found, it seems clear that lying is common human behavior and often serves
some useful purpose, a discussion of which could have been informative. Instead, we get lectures on why we should
always share difficult truths. We’re even given the classic example of learning
of an affair of which one partner is unaware, with nary a thought to the
possibility that the couple could have an open marriage or a mutually agreed
“don’t ask, don’t tell” policy.
Moreover,
Harris actually wants us to tell people that they do “look fat in that,” in
order to spur better wardrobe choices and/or weight loss and to avoid “robbing”
our friends or partners of a chance to change for the better. (No mention is
made of the possibility that such truth telling can be a form of hostility).
There’s
no discussion of the developmental significance of lying in a child’s
understanding of the minds of others, no look at the evolutionary aspects of
deception, no exploration of why social lies are so common— nothing here but
moralizing with little subtlety, let alone material that could guide understanding
of the sad situation that undid a promising journalist. Honest!
The Demise of Guys: Why Boys Are Struggling and What We Can Do About It, by Philip Zimbardo and Nikita Duncan. TED Books. Kindle, Nook, iBooks, $2.99
Reviewed by Carl Zimmer
Tonight, I want to talk to you about a national crisis. A global crisis. A crisis of such tremendous proportions that you may not even be aware that it is engulfing you and your loved ones and your neighbors in flames.
What is this crisis? It is a crisis of our brains. The brains of our fellow citizens are being digitally rewired. How? Here is how. Hundreds of millions of people are gazing at online videos, spending billions of aggregate hours slack-jawed in front of their monitors. These videos are sucking up all the time that these people would otherwise spend reading the great books that you and I grew up with. Remember those days back in the Reagan administration when we little tykes would page through Cicero and Racine? No more. Instead, we face an epidemic of short-term distraction. These videos last no more than 18 minutes, and often less. As soon as one video is over, we can choose from hundreds of others with the click of a mouse. Each one is different from the last, flooding our brains with an unnatural wealth of variety. Very soon, we even become addicted to that variety. Yes, that's right, addicted. It's an addiction no different from cocaine, heroin, vodka, bingo, Ben & Jerry's, Law & Order streamed on Netflix, or MySpace.
Wait, I meant Facebook. Nobody uses MySpace anymore, so that can't be addictive.
Right. Where was I?
These videos are so addictive that they are cracking the very foundation of human civilization. The endless barrage of these tiny films erodes the circuitry in our prefrontal cortex that normally enable us to focus for long periods of time and compose Petrarchan sonnets to our loved ones. These videos evade the true complexity of life. They provide us with easy resolutions. They flatter us, rather than forcing us to ask tough questions about ourselves or our political system. We become zombies as the reward centers of the brain explode like fireworks, leaving us helpless victims for mind-controlling masters. Is it any wonder that the rise of these videos to global domination correlates perfectly with the rise of Kim Kardashian? What else could possible account for this coincidence?
Therefore we must take immediate steps to ban TED talks.
About 42 percent of the way through Erika Hayasaki’s Kindle Single, Dead or Alive, a book about Near Death Experiences (NDEs), I experienced a freaky coincidence. I was in the field with a team of scientists when a member of the crew started telling me about a horrific accident he had been in a year before. I asked him if he still had nightmares. Not as often, he answered, before telling me about the out-of-body experience he had in the operating room, when he suddenly found himself above the action, looking down on his body as doctors and nurses struggled to save his life.
"I don’t know why I’m telling you this," he said. “I’ve told almost no one and I don’t like to talk about it.” The subtext being, he keeps it to himself to avoid either one of two reactions: disbelief or way too much belief.
Hayasaki explores this treacherous territory in Dead or Alive, investigating the science behind NDEs. The story is perfect for the length of a Kindle Single: the study of NDEs is in its infancy and so there's little solid scientific evidence. A longer book would be repetitive, recounting endless anecdotes and relying too heavily on speculation.
Hayasaki opens Dead or Alive with the NDE experienced by her uncle, Richard K. Harris, a lawyer turned writer. It sounds like the typical NDE description familiar to anyone who reads, watches movies, television, or roams the Internet, complete with tunnels, brilliant lights, and the presence of already departed loved ones.
It’s a brave place to start. If not for the fact that Hayasaki is a former reporter for the Los Angeles Times, (where she wrote several articles that inspired this book), I might have rolled my eyes and left Dead or Alive to languish in the “Books” collection of my Kindle. But Hayasaki understands something fundamental about NDEs — the universality of NDE descriptions can make them less credible, since anyone can describe an NDE whether they’ve had one or not. To give the experience some specificity, she focuses on Harris, recounting his experiences before his own brush with death.
By introducing both Harris and his NDE, Hayasaki hooks the reader. It becomes paramount to find out if NDEs can be scientifically explained. Is it just the product of a brain trying to make sense of dying? Or is it possible that a meta-consciousness awaits us all at the end?
Hayasaki delves into past writings about NDEs. In the mid-1970s the psychologist Raymond Moody interviewed 150 people who had been declared dead and were then revived. From the interviews he drew a universal description of NDEs, which, it turns out, have been reported throughout history. Research has accelerated since Moody’s study. A number of studies suggest that a lack of oxygen to the brain may be the cause of NDEs. Hayasaki interviews NDE researchers, even finding a neurosurgeon who experienced an NDE himself.
This is compelling reading. Who does not want to know if science can determine if death is final? (Less compelling is Harris’s story, which Hayasaki weaves into her narrative. Hayasaki never knew her uncle well. He had distanced himself from his family, and he died of cancer soon after they met.) And when it comes to the subject of NDEs, Hayasaki’s timing is impeccable. Baby boomers are reaching the age when their family and friends are starting to die. The cynic in me says the latest research on NDEs is driven by a dominant generation accustomed to questioning the status quo. Boomers, after all, made 40 the new 30 and 50 the new 40. They can’t cheat death, so they’re questioning it through science.
The non-cynic in me says technology is the true driver of this research. It’s easier than ever to study NDEs. Better brain maps courtesy of medical imaging equipment have allowed scientists to stimulate specific parts of the brain with electrodes to induce out-of-body experiences in test subjects, for example. With MRIs scientists can study test subjects’ brains as they recall NDEs. And scientific papers on the topic have turned up in journals like The Lancet and Trends in Cognitive Sciences.
Although studies often focus on the out-of-body experiences associated with NDEs, I didn’t know until reading Dead or Alive that people near death frequently say they feel nothing as they gaze at their corporeal forms, however broken and distressed they might look. When my new acquaintance, the accident survivor, expressed the same sentiment, I hadn’t read far enough into the book to know that about NDEs and I doubt he scoured the Internet looking for lesser known details. This volunteered bit of information, his hasty retreat from the conversation, and reading the book, made me think the NDE experience — brain-based or not — is more real and profound to people than I had previously accepted.
It’s hard to tell if Hayasaki believes NDEs reside only in the brain or that consciousness lives on despite the body’s death. The balance of probabilities tips toward the brain studies and their conclusions so far. But ultimately no one knows what happens after death and in Dead or Alive I get the sense that Hayasaki is asking us all to keep our minds open.
Jude Isabella writes about science for kids and grown-ups. She has written for The Walrus, New Scientist, Archaeology Magazine, Canadian Geographic, and other publications. Her books, Chit Chat, a Celebration of the World’s Languages will be published fall 2013 by Kids Can Press, and Salmon: a Scientific Memoir in spring 2013 by RMB. Follow her on Twitter.
Blazing My Trail: Living and Thriving with Autism. Published by the author. Kindle, $7.99.
Reviewed by Steve Silberman
It's fashionable to say that autism has become a fashion.
If you think overweening psychologists are hastily applying labels like Asperger syndrome to quirky nerds who should be perfectly capable of making their way in the world with no special help, assistance, or accommodations, you have plenty of company. This past January, for example, the New York Times ran two op-eds in one day making that claim, including one by a young novelist named Benjamin Nugent who declared, "Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome."
The source of his authority on the subject, apparently, was that Nugent himself once received such a diagnosis as a teenager -- at the urging of his mother, a psychology professor -- and appeared in an educational video called Understanding Asperger's in a "wannabe hipster polo shirt." Now, however, Nugent has come to believe that the behavior his mother took for the telltale signs of a developmental disorder was merely his geeky teenage lifestyle, which included spending "a lot of time by myself in my room reading novels and listening to music." He went on to say that the cure for his misdiagnosis was moving to New York City, where he was finally able to meet other formerly bookish kids and schmooze with them in cafés. Having left his dreary foray on the spectrum behind him -- followed by a "long time" of sulking in his mother's presence for having put him through the ordeal -- he's now a professor of creative writing in New Hampshire.
Nugent's glib report surely provided a kind of comfort to some readers, who could return to their lives secure in the knowledge that many of these "Aspies" whom one keeps hearing about are simply "withdrawn, bookish kids" unnecessarily labeled by their histrionic parents with the help of psychologists eager to vault aboard the latest diagnostic bandwagon. After spending the past couple of years interviewing and spending time with autistic people and their families for a book, however, I can tell you that Nugent's experience is the exception, not the rule.
Everyone I've met who has been diagnosed with Asperger's syndrome or other form of autism faces profound challenges in day-to-day life. Even the most "high-functioning" autistic people (a term I now avoid using, because it renders certain forms of cognitive disability harder to see, while obscuring the gifts and competence of those branded as "low-functioning") work tremendously hard to find and sustain friendships; to manage the jarring changes that intrude into the most carefully planned-out schedules; to maintain their composure in noisy sensory environments; to get hired for jobs worthy of their intelligence and skills; and to navigate their way daily through a minefield of unspoken social rules and cues designed by and for people whose brains are wired differently from their own.
That's one reason the revision of the criteria for autism in the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders -- the bible of psychiatry used to determine diagnosis, access to services, and reimbursement from insurers -- has become so controversial. Even psychiatrist Allen Frances, who led the task force that developed the criteria in the DSM-IV, has gotten into the act, claiming that spectrum diagnoses have become "faddish." Many autistic self-advocates suspect the American Psychiatric Association is about to pull a diagnostic sleight-of-hand by shaving off a portion of the population that would have been eligible for an Asperger's diagnosis under the DSM-IV criteria, and give them a newly minted diagnosis of Social Communication Disorder, which has no legacy services or support systems. Some fear the APA is trying to finesse the increasing scarcity and overloading of services for autism, when budgets are being slashed in the name of austerity, by manipulating labels to lower demand.
There is no question that people diagnosed with Asperger's syndrome have an authentic need for help, long after they've "aged out" of the meager support provided to kids until they turn 21. Contrast Nugent's breezy anecdotes about pissing off his schoolmates by "trying to speak like an E.M. Forster narrator" with this description of attempting to absorb an ordinary conversation written by Rachel Cohen-Rottenberg, one of the most passionate and articulate disability-rights bloggers, and author of a new ebook called Blazing My Trail: Living and Thriving with Autism. "When I hear, I see the spelled-out words in my mind, and I have to internally read and translate those words in order to understand their meanings. As a result, even in quiet environments, I cannot keep up with verbal input for more than five or 10 minutes without falling behind, unless the other person slows down his or her speech and leaves a number of pauses in which I can respond. Pacing is everything."
Or consider this list of activities that Cohen-Rottenberg identifies as particularly challenging:
Food shopping
Sweeping and mopping the floor
Cooking
Driving
Running errands
Going to appointments
Planning, executing, and transitioning between tasks
Working at a job
Making friends
Autistic people in Cohen-Rottenberg's generation never got the chance to be diagnosed with Asperger's as kids, because the diagnosis didn't exist. It's easy to forget that just 40 years ago, there was no concept of a broad, inclusive spectrum that encompassed accomplished professionals like Temple Grandin and autistic people who may never learn to speak or put on their clothes in the morning without help. (Indeed, Grandin's debut memoir, Emergence, was initially billed as the first book by a "recovered" autistic person, because the idea that an autistic woman could enroll at a university, earn an advanced degree, and become a leader in a demanding field didn't seem possible.)
On websites for parents, an autism diagnosis is often framed as a heartbreaking event, an occasion for grieving the typical child they'd planned for. That's understandable and human, but it's illuminating to read statements like "Don't Mourn for Us" by autistic adults like Jim Sinclair, one of the pioneers who has inspired a generation of self-advocates to view their autism as an essential part of who they are, rather than as a pathology they might be cured of someday.
For Cohen-Rottenberg, who was 50 years old when she was diagnosed, the label arrived as a blessing. She felt she finally understood why she had been relentlessly bullied and teased when she was young; why she found certain environments that other people enjoyed (such as crowded restaurants) unendurable; why her first marriage went off the rails; and why she had to work so hard to parse non-verbal cues that her peers can take for granted. "I was like a person with mobility issues trying to run a marathon every day and keep up with people whose bodies worked differently from mine. Burnout was inevitable," she writes. "In a few short years, I seemed to go from a lifetime of being super-functional to struggling with basic things… It was my lifelong ignorance of being autistic that was catching up with me."
Unlike many of the ebooks reviewed at Download the Universe, Blazing My Trail offers no multimedia bells and whistles; it's just text with a few family photographs. But it represents the promising potential of the form to provide a venue for highly skilled writers who might never have been able to convince a corporate publisher that their message was capable of engaging a mainstream audience.
Cohen-Rottenberg's first ebook, The Uncharted Path, available as a PDF, recounted her difficult upbringing and her path to diagnosis. "My attempts at making contacts always felt a bit like trying to drive a car by gripping the steering wheel with my teeth," she wrote. Blazing My Trail continues the story, and addresses how she and her second husband, Bob, have worked as a team to manage her sensory sensitivities and social challenges while building a happy life together. Her unaffected honesty makes Blazing My Trail an uplifting journey -- not in the usual sense of being a heroic saga of a narrator "overcoming" disability with pluck and guile; but by bearing witness to the power of accepting and celebrating oneself exactly as one is.
Cohen-Rottenberg comes through her writing as a wise elder of her tribe and a role model for young people, as well as a smart critic of social attitudes toward disabilities, both visible and invisible. "If we lived in a society that took human diversity for granted, that made room for difference as a deeply held value, every one of us would benefit," she says. "Our view of one another would become much more expansive, much more respectful, and much more compassionate. Ultimately, we might even see one another as perfectly different and perfectly human."
Steve Silberman is writing a book about autism and neurodiversity called NeuroTribes: Thinking Smarter About People Who Think Differently for Avery/Penguin 2013. He is a contributing editor of Wired magazine and one of Time's selected science tweeters (@stevesilberman). He lives with his husband in San Francisco.
SMILE: The Astonishing Power of a Simple Act, by Ron Gutman. TED Books, 2011. Kindle /Nook / iBookstore
Reviewed by David Dobbs
Sometimes when I encounter writing I especially admire, I like to type it out. Say, Nabokov, in The Luzhin Defense, describing his heroine taking a bath amid marital confusion:
As she immersed herself in the bath she watched the tiny water bubbles gathering on her skin and on the sinking, porous sponge. Settling down up to the neck, she saw herself through the already slightly soapy water, her body thin and almost transparent, and when a knee came just barely out of the water, this round, glistening, pink island was somehow unexpected in its unmistakable corporeality.
I type such passages because it seems they might rub off. So when for some reason the passages I had highlighted in my Kindle version of the book under review here, SMILE: The Astonishing Powers of a Simple Act, did not carry from my reading device to my Amazon Kindle highlights web page, where normally I would be able to select and copy them, I frowned, because this malfunction meant that to show you any passages from this book I would have to re-type them, and I feared, dear reader, and still fear, that they might rub off. I will have to read a lot of Nabokov to make up for this.
The problem begins with the beginning, where precisely 11% of this e-book, according to my Kindle, is devoted to setting up a punchline that the title has already shouted loud. The author, a Palo Alto entrepreneur named Ron Gutman, who truly does seem like a nice guy, opens by describing a bus ride he once took in Africa. The driver and all Gutman's fellow passengers greet glumly his foreign face, language, and clothing, then leave him sitting alone, isolated on the crowded bus. After a couple hours of this dusty bus ride, and many, many words, he springs his surprise:
I decided to try something different and do something entirely unexpected. It was time to pull out the special power I had learned and brought with me from my interactions with people I had met during my previous travels through Asia and India, when I had connected with people from other cultures who did not speak any of the languages that I do.
I smiled.
I smiled at everyone around me. I smiled indiscriminately, I smiled widely, I smiled continuously. Whether people looked at me or not, I smiled at them. Although no one responded to my smiles, I started to feel better.
They do eventually respond, of course, and soon the whole bus is smiling. Thus this book is born:
In the heart of a foreign land, away from development and infrastructure, in a closed environment where I looked and felt like an outsider, stuck in a situation where it seemed I could not talk to or understand others, and in the midst of unusual tension that I could not understand or explain, I became aware of the hidden power of the smile.
This smiling reveal may have worked on the bus, and it works, mostly, sort of, in Gutman’s 7-minute TED talk. It does not work on the page. As I seem to remember someone once saying rather cruelly of another writer I'll leave unnamed: What’s important is not new, and what’s new is not important.* And everything is repeated.
Did you know, for instance, that people everywhere smile? This means smiling is universal. Even more amazing: Your smile not only makes the people you smile at feel better, it makes you feel better too. Also, on a separate page very nearby, even as smiling makes you feel better, it makes others feel better! Or did I say that? Anyway, smiling at people also makes them think that you are both more competent and more friendly than they would think otherwise — and, incredibly, your smile also makes them feel more friendly and competent. Plus better.
This can change things. Indeed, if you think about it, smiles have “incredible transformative powers.” Smiles “can dramatically and quickly change social situations, breaking down barriers while forming connections and fostering happiness.” They can also, even as soon as one paragraph later, “create rapport and a human connection.”
Gutman finds this all astonishing — although he usually says “amazing,” presumably to reserve “astonishing” for the book’s subtitle. He is explicitly amazed, in fact, 12 times. (Beware, authors, the power of the Kindle to count your crutch words.) Overall, I would say, what amazes him most is the smile's astonishing power to make things better. He remarks on this power to make things "better” at least 25 times. It excites him. So he exclaims! Alas, Kindle will not find and count exclamation points. Damn!
Mechanisms emerge. Smiling, Gutman tells us, sets up a feedback loop:
To glaze this donut, Gutman turns to science. He finds many studies but, apparently, few commas. Did you know, for instance, that “in two separate studies examining thousands of pictures taken from 1968 through 1993 and 1970 through 1999 researchers discovered that 55 percent to 60 percent of men and 80 percent of women smile in photos from pleasant public situations”? Me either.
Why do people smile so? Because “smiling makes us feel and look better, both to ourselves and to others.” It was about here that my frown began to turn to fury, for while Gutman had related this fact at least ten times already, I was only, my Kindle cruelly revealed, 62% of the way through the book, which was way too far and hardly far enough. Then, in case I’d forgotten this crucial message while checking my progress, he used the next sentence to tell me an eleventh time.
The glaze accrues. “Under certain conditions, when men see women smile at them they interpret that as a sign that the women think they are attractive.” I would never have guessed. Lest I resist this news, however, Gutman offers a study showing that a women who smiles at male patrons as she enters a bar will get hit on far more often than she would if she simply makes eye contact as she walks in — which to me seems a brave enough thing itself. Same goes in libraries, One researcher, in fact, “ended up marrying one of her test subjects who first approached her because of her smile!" Exclamation point his.
Scan studies too enter the picture, arriving as thin, obvious, inevitable, and alluring as a pharmaceutical sales rep at a doctor's office. One fMRI study, for instance — of 28 moms, which is only a few more than the number of times Gutman mentions this effect — showed that Mommy’s pleasure centers light up when Baby smiles. Other scan studies show that a single smile can bring the brain as much pleasure as 2000 chocolate bars or $25,000. Someone tell the chocolate people they're wildly underpricing. And for me, please hold the smile; I'll take the cash.
What can we do with this information? Gutman offers suggestions. Smile. Smile at strangers. Smile at yourself. Smile the first thing on waking. Smile when you’re skydiving. Smile while you’re giving natural childbirth. Offers one smiley devotee, “I smiled through my natural, drug-free labor and fully believe it transformed the whole experience. I recommend smiling to all women going through childbirth.” I would love to have seen this woman recommend that to my wife as she was being wheeled down the hall for a c-section after 40 hours of labor and 4 hours of pushing. In fact, to test the astonishing power of this recommendation, I just now read it aloud to my wife. Her reaction makes me long to see this woman offer her this advice even now. She wouldn't be smiling when she finished.
I don’t mean to be cruel. I’m actually fairly smiley myself. But this book, which as a TED book is supposed to be about "a powerful idea," is a fatty concoction of neuropop, adventure travel, self-help, California woo, and Palo Alto entrepreneurial gush. It pushes positive thinking across some mathematical warp zone that renders it negative. I suspect it would make even the father of positive thinking, Norman Vincent Peale, just fwow wight up.
But don’t take my word for it. I’ll give Gutman a chance to close the deal. Elipses are his:
So, whenever you want to look great, sociable, and competent, or whenever you want to reduce your stress or improve your marriage, or whenever you want to feel as if you’ve just had a huge stack of high-quality chocolate (without incurring the caloric cost) or as if you’ve just found $25,000 in the pocket of an old jacket you haven’t work for ages…. Or when you want to earn the trust of others so you can change the world for the better…. Or when you just want to help yourself and others around you live longer, healthier happier lives … SMILE.
At that I believe I did smile, or at least grimace with relief, for I had finally reached the end.
David Dobbs, the author of The Atavist e-book bestseller My Mother's Lover, writes on science, culture, and sports for publications including The Atlantic, The New York Times Magzine, National Geographic, and Slate. He blogs at WIRED is now writing his fourth book, The Orchid and the Dandelion.
