When an Autism Diagnosis Comes as a Blessing

Posted on May 14, 2012 by admin

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including one by a young novelist named Benjamin Nugent who declared, "Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome."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return to their lives secure in the knowledge that many of these "Aspies" whom one keeps hearing about are simply "withdrawn, bookish kids" unnecessarily labeled by their histrionic parents with the help of psychologists eager to vault aboard the latest diagnostic bandwagon.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 Destructive Power of Positive Thinking

Posted on February 28, 2012 by admin

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.

Roy Scheider's with me on this, by the way:

Thanks, Ed Yong, for the tip on the vid.

DDinwoods100x100 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.