Practical Tips on Writing a Book from 23 Brilliant Authors

By Steve Silberman
Posted: June 2, 2011
Steve Silberman reading at the Booksmith in SF.

Steve Silberman reading at the Booksmith in SF. Photo by Heather Champ.

I love books. My late father Donald, who taught Wordsworth and Melville to inner-city kids for decades, used to read Ulysses to me while he carried me on his shoulders. Perhaps it was inevitable that I grew up to be a writer. Now, after years of investigative reporting for Wired and other magazines, I’m finally writing a book of my own.

The subject of my book is autism, the variety of human cognitive styles, and the rise of the neurodiversity movement. The seed of the project was an article I wrote for Wired in 2001 called “The Geek Syndrome” about autism and Asperger syndrome in high-tech communities like Silicon Valley. I’m happy and humbled to say that it was an influential article, and I still get email about it from the families of kids on the spectrum and from autistic people themselves, though it was published more than a decade ago.

The science of developmental disorders has made significant advances in recent years, and some of the social issues that I raised in the piece — such as the contributions that people with atypical cognitive styles have made to the progress of science, technology, and culture — seem more relevant than ever. At the same time, the wave of kids diagnosed with Autism Spectrum Disorders in the ’90s is now coming of age, and their heroically devoted families are facing fear and uncertainty about the future as crucial government-funded services and support provided to families of special-needs children dry up. Meanwhile, neurodiversity advocates are challenging narrow definitions of “normal” cognition, and autistic people — even those who are unable to employ spoken language — are using assistive technology like the iPad to express themselves. There’s a lot of new ground to cover.

I’ve signed a contract with a wonderful publisher — a Penguin imprint called Avery Books — and a sharp and enthusiastic editor named Rachel Holtzman. One of the most thrilling moments of my life as a writer was walking into Penguin headquarters in Manhattan and seeing classic jackets for Jack Kerouac’s novels like The Dharma Bums framed on the wall. It was reading the exhilarating, compassionate, and perennially fresh poetry and prose of Kerouac, Allen Ginsberg, Gary Snyder and their friends that made me want to grow up to be a writer in the first place.

I’m not sentimental about old media vs. new media. Nothing will ever replace the sublime feeling of sanctuary created by the printed page, but I treasure the books on my Kindle too, particularly when I’m reading at 30,000 feet. What I love is words — storytelling, the flow of well-wrought sentences, the gradual unfolding of a long and thoughtful tale, the private communion with an author’s mind.

But now comes the hard part. It’s one thing to work up a 4000-word magazine feature and another to sit down and write a 100,000-word book. I’m acutely aware that I’ve been granted a precious opportunity to cast light on forgotten history and provide a platform for voices that are rarely heard. At the same time, I’m scared out of my wits that the two decades of journalism that have led up to this project have not prepared me to write a good book. I wake up at 3am staring into the darkness, wondering if I’ll have the skills, discipline, and inner resources to pull it off.

I’ve chosen to deal with my anxiety by tapping into the wisdom of the hive mind. I recently sent email to the authors in my social network and asked them, “What do you wish you’d known about the process of writing a book that you didn’t know before you did it?”

I’m delighted with the sheer range of practical advice that poured in. The writers in this group are as diverse as the volumes that line the shelves in my home office.  There are top science writers and journalists like Carl Zimmer, Jonah Lehrer, Deborah Blum, Paula Span, and David Shenk; prolific blogger Geoff Manaugh of the endlessly fascinating BLDGBLOG, which focuses on architecture and the future of urbanism; award-winning poet and essayist August Kleinzahler; a wise-beyond-his-years entrepreneur named Ben Casnocha; a Zen master named John Tarrant and an author of Buddhist bestsellers, Sylvia Boorstein; two-time Rock and Roll Hall of Fame inductee David Crosby of the Byrds and Crosby, Stills, Nash and Young; and two of the geniuses who helped launch 21st century digital culture and the spunky “maker” movement, Cory Doctorow and Mark Frauenfelder of BoingBoing. A more diverse group of writers, talking about the nuts and bolts of their craft, would be hard to find anywhere on the Web.

A few things became clear as soon as their replies came in. First of all, I’ll have to throttle back my use of Twitter and Facebook to get this writing done (and I may never rev up my idle Quora account after all.) Secondly, scheduling intervals of regular exercise and renewal amid the hours of writing will be essential. And thirdly, I’ll certainly be buying and downloading a software program called Scrivener, which is a powerful word processor specifically designed for writing books and keeping vast amounts of related data in good order.

Reading these tips has made the voice in my head that whispers I can do this a little louder when my eyelids snap open before dawn. I hope the advice here inspires the creation of many great books, not only the one I hope to write. I’m deeply grateful for the time and attention of the master writers assembled here.

Enjoy — and good luck with your own writing!

The Tangled Bank by Carl Zimmer

Carl Zimmer

Author of A Planet of Viruses, The Tangled Bank, and Brain Cuttings

  1. Do as much research as possible away from the Internet — with living people, in real places.
  2. Be ready to organize vast amounts of data. Use a wall, or software like Scrivener.
  3. Be ready to amputate entire chapters. It will be painful.

The Genius in All Of UsDavid Shenk
Author of The Forgetting and The Genius in All of Us

  1. Make it great, no matter how long it takes. There’s no such thing as too many drafts. There’s no such thing as too much time spent. As you well know, a great book can last forever. A great book can change a person’s life. A mediocre book is just commerce.
  2. Get feedback — oodles of it. Along the way, show pieces of your book to lots of people — different types of people. Ply them with wine and beg them for candor. Find out what’s missing, what’s being misinterpreted, what isn’t convincing, what’s falling flat. This doesn’t mean you take every suggestion or write the book by committee. But this process will allow to marry your necessarily-precious vision with how people will actually react. I find that invaluable.
  3. Let some of you come through. You’re obviously not writing a memoir here, but this book is still partly about you — the world you see, the way you think, the experiences you have with people. And trust me, readers are interested in who you are. So don’t be afraid to let bits and pieces of your personality and even life details seep into the text. It will breathe a lot of life into the book.

For the Win by Cory DoctorowCory Doctorow
Author of With a Little Help, For the Win, Makers, and Down and Out in the Magic Kingdom

  1. Write every day. Anything you do every day gets easier. If you’re insanely busy, make the amount that you write every day small (100 words? 250 words?) but do it every day.
  2. Write even when the mood isn’t right. You can’t tell if what you’re writing is good or bad while you’re writing it.
  3. Write when the book sucks and it isn’t going anywhere. Just keep writing. It doesn’t suck. Your conscious is having a panic attack because it doesn’t believe your subconscious knows what it’s doing.
  4. Stop in the middle of a sentence, leaving a rough edge for you to start from the next day — that way, you can write three or five words without being “creative” and before you know it, you’re writing.
  5. Write even when the world is chaotic. You don’t need a cigarette, silence, music, a comfortable chair, or inner peace to write. You just need ten minutes and a writing implement.
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Category: Asperger Syndrome, Autism, Books, Buddhism, E-books, History, Journalism, Media, Mindfulness, Neurodiversity, Poetry, Science, Science Writing, Social networks, Technology, Writers | Tagged , , , , , , , , , , , , , , , , , , , , , | 210 Comments

Why the GOP Hates the National Science Foundation

By Steve Silberman
Posted: May 27, 2011
Senator Tom Coburn

Senator Tom Coburn (R-OK) registers disapproval of NSF-sponsored Jell-O wrestling on the taxpayers' dime

Yesterday in Washington, amid great fanfare, the Republican senator from Oklahoma, Tom Coburn, released a 73-page report called The National Science Foundation: Under the Microscope. The report – deemed “scathing” in an “exclusive” by ABC News, and widely touted by other news organizations, particularly those owned by Rupert Murdoch — purported to expose a culture of waste, fraud, and mismanagement at the NSF.

“This report identifies over $3 billion in mismanagement at NSF,” the authors intoned ominously. “This includes tens of millions of dollars spent on questionable studies, excessive amounts of expired funds that have not been returned to the Treasury, inadequate contracting practices that unnecessarily increase costs, and a lack of metrics to demonstrate results.”

This sounds like a shocking waste of taxpayers’ money in a time of fiscal belt-tightening, and the type of “studies” cited by the report sound dubious indeed, including research into “How to ride a bike; When did dogs became man’s best friend; If political views are genetically pre-determined; How to improve the quality of wine; Do boys like to play with trucks and girls like to play with dolls.”

Three of the most egregious sounding items in Coburn’s report are described as a study in which a “scientist put shrimp on a tiny treadmill to determine if sickness impaired the mobility of the crustaceans,” an effort to design robots capable of folding laundry, and an outbreak of “jello (sic) wrestling in Antarctica at the NSF research station McMurdo station.” The Senator and his team of fiscal watchdogs helpfully included a grotesque snapshot of the Jell-O incident, which looks like it was cut and pasted from some other Congressional report on the menace of online pornography.

Jell-O wrestling at McMurdo Station

Actual picture and caption from Coburn's NSF report

Surely there is waste and mismanagement at the NSF, as there is at any large organization staffed by human beings, though even allegedly LOL-worthy studies of ailing shrimp can yield results that inform the fate of fisheries that provide food and jobs for millions of people. Many outlets in the mainstream media and the right-wing blogosphere dutifully mocked the alleged absurdities detailed in the report, complete with the inevitable photos of sick shrimp on treadmills (also furnished by Senator Coburn’s office) and Jell-O swingers partying at the South Pole in this year’s installment of a recurring GOP series that you might call Scientists Gone Wild – a phrase that actually appears as a headline in Coburn’s report. (“This science isn’t just weird, it’s expensive!” gushed Murdoch’s New York Post.)

Highlights of the 2008 version of the same partisan show included John McCain and Sarah Palin — then running for the highest offices in the land — fulminating about earmarks for “fruit fly research in Paris, France,” with Palin throwing in a plucky “I kid you not!” to express her taxpayer’s righteous indignation.

Never mind that thousands of world-changing breakthroughs in health and basic science have resulted from studying Drosophila, and that the specific research Palin was ridiculing was focused on proteins in the brain called neurexins that may play a role in neural dysfunction in autism. Never mind that improving care for kids with developmental disabilities (such as autism and Down’s syndrome) is allegedly one of the causes dearest to the heart of Palin, who is the mother of a kid with Down’s syndrome, and has just announced her candidacy for the presidency of the United States.  Her logic is not terribly profound: If government-funded scientists are behind these fruit-fly antics in “Paris, France,” the science must be fruity indeed.
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Woof! John Elder Robison, Living Boldly as a “Free-Range Aspergian”

By Steve Silberman
Posted: May 18, 2011
John Elder Robison

John Elder Robison, author of "Be Different" and "Look Me in the Eye"

John Elder Robison would stand out in a crowd even if he didn’t have Asperger syndrome. A gruff, powerfully built, tirelessly curious, blue-eyed bear of a man, he hurtles down a San Diego sidewalk toward a promising Mexican restaurant like an unstoppable force of nature. ”What’s keepin’ you stragglers?” he calls back to the shorter-legged ambulators dawdling in his wake.

As they catch up, Robison utters his all-purpose sound of approval — “Woof!” — which he utters often, being a man in his middle years who is finally at peace with himself after a difficult coming-of-age. For the acclaimed author of the 2007 New York Times bestseller Look Me in the Eye, a diagnosis of Autism Spectrum Disorder in mid-life was liberating, giving a name to the nagging feeling that he was somehow different from nearly everyone around him.

Temple Grandin and John Robison

Temple Grandin and John Elder Robison see eye-to-eye at an autism conference, 2011

Like many people with Asperger syndrome, Robison considers himself, as he puts it, “an aficionado of machines.” He built his first DIY creations with an Erector Set; the elegant machines that sustain his livelihood now have names like Rolls-Royce, Mercedes, Land Rover, and Bentley. His high-end auto-repair shop in Springfield, Massachusetts, J. E. Robison Service, is one of the most successful independent body shops in New England.

As a precocious gearhead in the late ’70s, the bearded, bespectacled Robison was the guy who pimped out Ace Frehley’s guitars to spit flames, spew smoke, and erupt in cascades of light at KISS shows, sending the band’s legions of admirers into spasms of pyrotechnic ecstasy. A veritable rock-and-roll orgy was underway all around him, but Robison (who had a girlfriend at home) was too terrified to even start up a conversation with a woman he didn’t know. After his time on the road, he took a job at Milton Bradley developing talking toys and games. Then came a stretch of unfulfilling years supervising sales of laser power supplies and fire alarms. Finally, in 1986, he opened his auto-repair shop.

In Look Me in the Eye, Robison described why he felt more comfortable around machines than people: “No matter how big the machine, I am in charge. Machines don’t talk back. They are predictable. They don’t trick me, and they’re never mean. I have a lot of trouble reading other people. I am not very good at looking at people and knowing whether they like me, or they’re mad, or they’re just waiting for me to say something. I don’t have problems like that with machines.”

One day, a longtime friend who was also a therapist handed him a copy of Tony Attwood’s Asperger Syndrome and said, “This book describes you exactly. You could be the poster boy for this condition.” Robison was skeptical only for the few moments it took him to glance through the pages and realize that his friend was right. Robison asked him if there was a cure.

“It’s not a disease. It doesn’t need curing,” his friend replied. “It’s just how you are.”

John Robison with light guitar, 1980

Robison with one of the guitars he customized for Ace Frehley of KISS, circa 1980. Photo by Mary Robison.

Discovering that other people struggled with the same inability to read faces, sensory overload, anxiety, and single-minded obsession with topics of interest helped catalyze Robison’s transformation into a writer, and Look Me in the Eye came out in 2007. Bestsellers run in Robison’s family; his younger brother, Augusten Burroughs, published his own account of their troubled upbringing called Running with Scissors, which was turned into a movie. The Aspergian frankness and guilelessness of Look Me in the Eye gave the book its distinctively bracing candor, much as Holden Caulfield’s X-ray vision for the “phonies” of Pencey Prep did for The Catcher in the Rye. Now Robison has published a book of anecdotal wisdom for young autistics called Be Different.

The core message of Be Different is to revel in your autistic differences but also to try to fit in as much as you can. It’s a book about hope — but not the kind of hope touted by vendors at conferences built around the promise of “recovering” kids from autism. Instead, Be Different advocates self-acceptance coupled with practical strategies for adapting to a world designed for non-autistic people. “The brain differences that make us Aspergian never go away,” Robison writes, “but we can learn two important things: how to play to our strengths and what to do to fit in with society. Both those skills will lead to a vastly improved quality of life.”

The cover of "Be Different"

Robison's new book "Be Different"

The book offers tips on making emotionally appropriate responses, managing social anxiety, and leveraging all-consuming “special interests” into a fulfilling occupation. The neurologist Oliver Sacks famously compared the life of autistic author and livestock-industry consultant Temple Grandin to that of an anthropologist on Mars; in some ways, Be Different is like a guidebook to the strange customs of Earth for those who occasionally feel like they were born on the wrong planet. ”I’ve learned to say ‘please’ and ‘thank you’ fairly often,” the author observes. “That’s a simple rule that delivers good results.”

Robison refers to the non-autistic inhabitants of this weird planet as nypicals, because he thinks the tongue-in-cheek term used by many autistics — neurotypical — is too clinical-sounding. “I suspect that the importance of initial connection is the reason nypicals evolved the hand-shaking ceremony,” he writes. “By shaking hands with everyone when you enter a room you make a connection to them and avoid the ‘I never noticed you’ problem.”

Photo by John Robison

Photo by John Robison

The occasion of my first meeting with the author was IMFAR 2011, the annual conference of the International Society of Autism Researchers sponsored by groups like the Simons Foundation for Autism Research, Autism Speaks, and the Autism Science Foundation. Held last week in San Diego, the conference offered a wealth of state-of-the-art research on everything from the biochemistry of the autistic brain to the pressing need to develop early interventions that will exploit youthful neuroplasticity to minimize disability in later life. For anyone seriously interested in leading-edge studies of spectrum conditions from many different angles, IMFAR is a must.

At the same time, after an eight-hour day of renowned scientists drilling down into the tragic deficits, dysfunctions, and disabilities suffered by those on the spectrum, it was refreshing to hang out with thriving, wisecracking Aspergians like Robison, WrongPlanet.net founder Alex Plank, and autistic self-advocate Stephen Shore.  (As a child Shore had a significant language delay, and his parents were advised to place him in an institution and move on; they refused, and he’s now a professor at Adelphi University.)

At one particularly relaxed dinner with Shannon Rosa of the Thinking Person’s Guide to Autism and Matt Carey of Left Brain/Right Brain — both of whom are proud parents of profoundly affected autistic kids — Shore coaxed sonatas from his iPad piano while Robison expostulated on the Old River Control Structure, the elaborate system of floodgates designed to keep the Mississippi from flooding Cajun country, which was just starting to make the news. Robison’s affection for machines was fully evident at IMFAR, whether showing off his beautifully composed digital photographs (some of which are featured in this blog post) or herding a flock of autistics and nypicals down to the waterfront to watch huge container ships in action.

Shipping containers in port San Diego.

Photo by John Robison

Before heading to San Diego for IMFAR, I spoke with Robison about Be Different, the aspects of life on the spectrum that he still finds challenging, what it’s like to be one of the few autistics in an advisory role to a fundraising organization like Autism Speaks, and the folly of branding people either “high-functioning” or ”low-functioning.”

Steve Silberman: What inspired you to write Be Different?

John Elder Robison: When I wrote Look Me In The Eye, I never intended it to be an all-inclusive guide to autism — it was just the story of my life. But so many people have come up to me asking me to explain how I became successful. They tell me, “You said that you were going to teach yourself to fit in and you did. I want to know how to do it myself.”

Then other people say things like, “I don’t understand how you could claim to be a person with autism and yet be at these loud rock and roll shows with flashing lights. My son can’t stand anything like that.” They want to understand how people with autism can be so different from one another and yet the same, and if I have some secret that will help their kid.

I don’t have all the answers. But the vast majority of people who read my stuff have a personal stake in autism — whether it’s them, their husband, their boyfriend, their child, or people they work with at school. That made me realize that I have a duty. When somebody asks me “Why?” I shouldn’t just shake my head and say “I don’t know.” That’s what evolved into Be Different. It’s the result of a journey of unraveling why I do the things I do and why I feel certain ways.

I thought very carefully about the things that have made me successful, and also the things that sometimes keep me from being successful. I looked at the DSM criteria for autism and Asperger’s and considered how each trait affected me. Some of the traits are just purely crippling things; there’s no good side to them for me. But other traits, like social disability… if I didn’t have friends because I was isolated by disability, I also had free time to study what I was interested in, which was technology.

I’m not very flexible –all I do is think about is electronics and computers — which people think is a disability. But when you combine that with my autistic fixation on things, you’ve got a kid who has a really powerful ability to learn about what he’s interested in. You can go a long way with that. Some traits that cripple me in one way have been a gift to me in another way.

Silberman: What are the aspects of autism that you still find really hard to deal with? You don’t talk much about that in your books.
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The Plot to Turn On the World: The Leary/Ginsberg Acid Conspiracy

By Steve Silberman
Posted: April 21, 2011
Tim Leary by Allen Ginsberg

Timothy Leary, Los Angeles, March 1992. Photo by Allen Ginsberg, used with permission of the Allen Ginsberg Estate. (Allen is visible in the mirror.)

In November of 1966, the poet Allen Ginsberg made a modest proposal to a room full of Unitarian ministers in Boston. “Everybody who hears my voice try the chemical LSD at least once,” he intoned. “Then I prophecy we will all have seen some ray of glory or vastness beyond our conditioned social selves, beyond our government, beyond America even, that will unite us into a peaceful community.”

The poet had been experimenting with drugs since the 1940s as a way of achieving the state that his Beat Generation friends named the “New Vision,” methodically keeping lists of the drugs he sampled — morphine with William Burroughs, marijuana with fellow be-bop fans in jazz clubs, and eventually the psychedelic vine called ayahuasca with a curandero in Peru.

For Ginsberg, drugs were not merely an indulgence or form of intoxication; they were tools for investigating the nature of mind, to be employed in tandem with writing, an approach he called “the old yoga of poesy.” In 1959, he volunteered to become an experimental subject at Stanford University, where two psychologists who were secretly working for the CIA to develop mind-control drugs gave him LSD; listening to recordings of Wagner and Gertrude Stein in the lab, he decided that acid was “a very safe drug,” and thought that even his suburban poet father Louis might like to try it.

By the time he addressed the Unitarian ministers in Boston, Ginsberg had become convinced that psychedelics held promise as agents of transformative mystical experience that were available to anyone, particularly when combined with music and other art forms. In place of stiff, hollow religious observances in churches and synagogues, the poet proposed “naked bacchantes” in national parks, along with sacramental orgies at rock concerts, to call forth a new, locally-grown American spirituality that could unify a generation of Adamic longhairs and earth mothers alienated by war and turned off by the pious hypocrisy of their elders.

Ginsberg’s potent ally in this campaign was a psychology professor at Harvard named Timothy Leary, who would eventually become the most prominent public advocate for mass consumption of LSD, coining a meme that became the ubiquitous rallying cry of the nascent 20th-century religious movement as it proliferated on t-shirts, black-light posters, and neon buttons from the Day-Glo Haight-Ashbury to swinging London: Turn On, Tune In, Drop Out.

Among those who took up the cause was the Beatles. John Lennon turned Leary’s woo-tastic mashups of The Tibetan Book of the Dead into one of the most profoundly strange, terrifying, and exhilarating tracks ever recorded: “Tomorrow Never Knows” on Revolver, which swooped in on a heart-stopping Ringo stutter-beat chased by clouds of infernal firebirds courtesy of backwards guitar and a tape loop of Paul McCartney laughing.

As the public faces of the psychedelic revolution, Ginsberg and Leary made a dynamic duo. The charming, boyish, Irish Harvard professor and the ecstatic, boldly gay, Hebraically-bearded Jersey bard became the de facto gurus of the movement they’d helped create — father figures for a generation of lysergic pilgrims who temporarily jettisoned their own fathers in their quest for renewable revelation.

By the close of the ’60s — with ominous stormclouds on the horizon in the form of violent debacles like Altamont, a Haight-Ashbury that had been taken over by speed freaks and the Mob, and Charles Manson’s crew of acid-addled zombie assassins — Ginsberg was already looking for more grounding and lasting forms of enlightenment. He eventually found what he was seeking in Buddhist mindfulness meditation.

The poet retained his counterculture cred until his death of liver cancer in 1997, but Leary didn’t fare as well. Subjected to obsessive persecution by government spooks like Watergate plumber G. Gordon Liddy, Leary launched a series of psychedelic communes that collapsed under the weight of their own ego-trips. Years of arrests, jail terms, spectacular escapes from prison aided by the Black Panthers, disturbing betrayals, and bizarre self-reinventions followed the brief season when the psych labs of Harvard seemed to give new birth to a new breed of American Transcendentalism that was as democratic as a test tube.

The spectacular rise and fall of Leary and Ginsberg’s plot to turn on the world is the subject of a new book by Peter Conners called White Hand Society, published by City Lights Books. I knew Ginsberg well for 20 years and was his teaching assistant at Naropa, a Buddhist university in Colorado, yet I learned a lot about Ginsberg’s role in helping to create Leary’s public identity by reading the book, which is based mostly on the lively correspondence between the two men. (For more detailed analysis of White Hand Society, see this insightful review by poet, Buddhist student, and Ginsberg scholar Marc Olmsted.) I spoke with Conners when he came through San Francisco on his book tour. He is currently at work on an oral history of the jam-band scene called JAMerica.

White Hand Society

White Hand Society

Steve Silberman: How did you come to write White Hand Society?

Peter Conners: I was visiting a friend at Stanford Law School in 1995. I knew that Stanford had just acquired Allen Ginsberg’s papers for the whopping and well-deserved sum of $1 million, all beautifully catalogued and so forth. So I had my friend get me in to see Allen’s papers with no real agenda about I was looking for. I signed out some boxes from the years I was most interested in, and found all sorts of interesting things. But the most fascinating was the correspondence between Allen and Timothy Leary. These letters were so exciting and intriguing, written from all over the world — mail from Mexico, postcards from Switzerland. The first letters were very formal, written on Harvard stationery, but they take on this almost poetic form as the years go by. The whole progression of their relationship is very clear.

Silberman:  Until I read your book, I never realized how much of an influence Allen had on Leary.

Conners:  It was massive. That’s really the heart of this book: How Allen Ginsberg enabled Timothy Leary to become Timothy Leary. It goes back to Allen being asked to give a presentation to all these psychiatrists coming in for an annual conference in Boston. Allen gets up there and reads a poem called “Lysergic Acid” and another called “Laughing Gas.” After the conference, Allen hears about Leary’s work and Leary — who was involved in testing psychedelics as “psychotomimetics,” substances that mimic psychosis — hears about Allen. Before then, there wasn’t really any artistic component to Leary’s research.

So in comes Allen, this great networker, this expert at forging connections between people in a very pure and organic way, and he turns Leary onto this idea of getting great artists and intellectuals to take these drugs. They thought that by the time the government caught on to what they were doing, they would have a foundation of prominent intellectuals who supported their work. Leary would later come right out and say, “From the time that Ginsberg showed up on my doorstep, everything changed. After that, the project was different, my life was different, and I was on a different path.” That spark drove me to write White Hand Society.

Peter Conners. Photo by Karen Conners.

Peter Conners. Photo by Karen Conners.

Silberman: I think it’s very smart that you open the book with Allen having auditory hallucinations of the voice of William Blake, who was like his poetic guru, in his apartment in Harlem in 1948. Allen and the other Beat writers had been experimenting with peyote and ayahuasca as far back as the early ’50s. Back then, you could buy peyote buttons on the streets of New York; there was a famous nursery on the Lower East Side where all the local hipsters would buy their peyote.

For Allen, psychedelic experience — like writing poems or anything else — was a form of scientific investigation. I love that quote from Leary in your book: “Every citizen a scientist.” Allen certainly felt that way about himself, though he didn’t draw a firm line between scientific investigation and mystical gnostic investigation. So, every citizen a scientist, and every citizen on a gnostic quest for hidden knowledge.  The epigraph of his book Kaddish and Other Poems is, “The message is: Widen the area of consciousness.”

Allen Ginsberg.

Allen Ginsberg.

Allen must have been a natural fit for Leary, and the elder poet was surely impressed with Leary’s Harvard credentials. Not many neo-hippie kids who post pictures of Leary to their Facebook profiles know that he was the inventor of some of the most widely-used standardized personality tests in the 1950s. Before he began championing LSD, he was taken very seriously by the psychiatric establishment. One of the most memorable moments from Leary’s early research at Harvard was the so-called Good Friday Experiment.

Conners: Yes. Leary, Walter Pahnke, and Ram Dass, who was then still called Richard Alpert, got a bunch of seminary students together in a Boston chapel on Good Friday and gave some of them psilocybin extract while others got placebos. The idea was to test if the drug enhanced the spiritual experience. So within 20 minutes you had some people rolling around in the pews, talking to God, and other people sitting there saying, “Well, I guess we didn’t get the good stuff.”  The people who had taken the psychedelics certainly seemed to have a more powerful experience with a more lasting spiritual resonance. So Leary always touted that as being one of the most successful scientific experiments of psychedelics, and it passed into the countercultural lore.
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“Loving Lampposts,” A Groundbreaking Documentary About Autism, Love, and Acceptance

By Steve Silberman
Posted: March 29, 2011
Sam and Todd Drezner

Todd Drezner, director of "Loving Lampposts," with his son Sam

It didn’t take long for Todd and Erika Drezner — a documentary filmmaker and a high-school English teacher who live in Brooklyn — to realize that their bright, blond, cherubically handsome son Sam is not a typical kid.

When he was still a baby, Sam would take the letters from his favorite alphabet puzzle and line them up in a certain order.  This sequence wasn’t alphabetical, but it was clearly important to Sam; he had the series memorized, and could recite it from memory. When he felt stressed out — like on the first day of going to a new school — he might spend hours muttering the sequence to himself, like a soothing incantation.

Letters weren’t the only things that embedded themselves in Sam’s prodigious memory. One day a car owned by his aunt got towed away, and she couldn’t remember the license number. Todd asked Sam, and he recited the digits on the license plate right away.

One of the most unusual of Sam’s preoccupations, however, involved making frequent pilgrimages to a certain set of lampposts located about a mile from the Drezners’ apartment in Prospect Park, a blessed few hundred acres of shady green in the asphalt heart of Brooklyn. Sam seemed enamored by these tall, elegant, elaborately cast fixtures; to touch each one, he would raise his hands as high as he could, sometimes standing on the elevated base so he could wrap his arms fully around the pole. He embarked on long reveries beneath one particular post, stroking the long grass at the base with his fingers. This whole ritual of devotion – with stops for snacks – could take two hours.

Sam Drezner and one of his lampposts

Sam visits one of his favorite lampposts in Prospect Park

At the same time, Sam was slipping behind his classmates at school on some basic skills like acquiring spoken language. For a sweet little guy, he could seem awfully remote at times. At the prompting of his teachers, he was diagnosed in early 2007 with a form of autism known as PDD-NOS, short for Pervasive Developmental Disorder – Not Otherwise Specified — one of the diagnostic catch-alls that will be subsumed under the general category of Autism Spectrum Disorder in the next edition of the bible of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders or DSM-5, which will be published in 2013.

To share the story of the emotional journey that his family has taken to come to terms with Sam’s autism, Todd Drezner has made a smart and deeply affecting documentary called Loving Lampposts, which is available today for purchase on DVD, on Netflix, and as a download on iTunes.

In its own understated and thoughtful way, Loving Lampposts is a groundbreaking, even revolutionary film. Instead of stoking fear and panic about an autism epidemic allegedly caused by vaccines, or promoting the efforts to ”recover” children from autism through biomedical treatments as organizations like Generation Rescue do, Loving Lampposts emphasizes the Drezners’ unconditional love for their son just as he is — quirks, weirdnesses, problems at school, and all.

By talking to other parents (including those who are committed to using unproven treatments in the hope that their children will “lose the diagnosis”), pioneers of autism research like Simon Baron-Cohen, and — most importantly — autistic people themselves, the film poses a challenging question: Can you learn to love an autistic child without wanting to “cure” him?

For the Drezners, the answer is yes. Other parents — particularly those whose kids suffer from more disabling impairments or disturbing behaviors than Sam does — may not be there yet. But everyone with a family member on the spectrum should consider this film a must-see — even if they arrive at different conclusions than Todd and Erika Drezner did.

Crucially, the filmmaker does not whitewash the significant problems that even happy autistic adults face in their daily lives. Few of the men and women on the spectrum in Loving Lampposts could pass for neurotypical or “NT” — the cheeky Aspergian term for non-autistic people. They struggle with sensory overload, finding meaningful employment, and obtaining the resources to live independently outside of institutions, while facing preconceptions about autism and blatant prejudice toward their eccentric behaviors.

One woman in the film seems as attached to an old refrigerator as Sam used to be to his lampposts (now six years old, he has since moved on to other “special interests.”) Several of these men and women have significant difficulties employing spoken language — but then turn out to be positively eloquent when equipped with a keyboard and text-to-speech software, like artist Dora Raymaker, co-director of AASPIRE, the Academic Autistic Spectrum Partnership in Research and Education. This clip of Raymaker alone is enough to set to rest the notion that just because someone has difficulty speaking in the usual way, they have nothing to say.

One of these brave men and women, Sharisa Joy Kochmeister, has cerebral palsy, epilepsy, a movement disorder called dyspraxia, and Autism Spectrum Disorder. But as the former president of a self-advocacy group called the Autism National Committee, Kochmeister has been instrumental in the fight for equal employment opportunities and social justice for people on the spectrum.

This struggle has been dubbed the neurodiversity movement, because it encourages looking at conditions like autism and ADHD as natural — albeit often highly challenging and disabling — variations in human cognitive style that can convey advantages (like Sam’s prodigious memory) as well as disadvantages.

One widespread misconception about the neurodiversity movement is that it is universally opposed to all treatments for medical problems associated with these conditions, such as the development of drugs for disabling anxiety or gastrointestinal issues. But the neurodiversity community is itself diverse. Most of the advocates I know are on the spectrum themselves, and emphasize the importance of taking a variety of approaches — including making changes to public policy and the accelerated development of assistive technology such as apps for the iPad — to improve the lives of people who think differently.

In Loving Lampposts, Drezner interviews several neurodiversity advocates, including Stephen Shore, a formerly non-verbal autistic who is now a professor at Adelphi University, and anthropologist Roy Richard Grinker, father of an autistic daughter and author of an extraordinarily compassionate 2007 book called Unstrange Minds. Toward the end of the film, Kochmeister tells the filmmaker that she feels autism is “a gift disguised as a dilemma.”

In one of the most moving sequences of the film, autistic performance artist Johnny Seitz tells parents, “You haven’t got a big enough imagination for what your child could become.”

I spoke with Drezner recently about the genesis of his film and the challenges he faced in his quest to understand his son’s atypically beautiful mind.

Steve Silberman: Loving Lampposts begins with your telling the viewer about Sam being diagnosed with autism. What led up to that? What were the first signs that your son was different from other kids?

Todd Drezner:  Our son had been going to a preschool for typical kids since he was a year old. As the other kids started to get older, we noticed that Sam wasn’t developing language as quickly as they were. I remember one Monday in particular when the teacher asked all the kids what they’d done over the weekend and posted the answers on the wall. The other kids spoke in sentences, but all Sam said was, “the slide down.”

Because Sam is our only child, we didn’t really know what to expect. What spurred us to get him tested was a parent-teacher conference at his day-care center. The teacher suggested that Sam was not always following what was going on in class and spending a lot of time by himself. The school thought it would be a good idea for him to get tested.

Silberman:  To be tested for autism specifically?

Drezner: They didn’t say “autism.” I don’t know what they were thinking — to get Sam tested for some sort of communication-delay disorder, I suppose.  So we found a place that we liked, but it was like that old Groucho Marx line about not wanting to join any club that would have you as a member — we didn’t want to get an evaluation done by anybody who had less than a three-month waiting list. So we decided to have Sam tested in December of 2006, when he was about two and a half, but we didn’t actually get it done until March of 2007.

They told us initially that Sam had “atypical autism,” which they later amended to the diagnosis of PDD-NOS. We took that to mean, “Sam’s kind of autistic, but kind of not, and who can say for sure? But he definitely needs a diagnosis.” So we shortened that just to say “autism.”

Silberman: What were your feelings during this whole process? Were you worried about your son?

Drezner: Worried is a good word for it. We had heard about autism before Sam was born, and worried a little about it — all couples worry — but we told ourselves that our son would be fine. So obviously when you find out there may be something wrong with your child, you’re worried. That word describes us.

At the same time, Sam was just a lovely child. He was easy in a way that some autistic kids I’ve met are not. He didn’t have a lot of stereotypical behaviors. The way that his autism manifested was that he would sit in a chair for an hour looking at a book and not saying a word. And we’d be saying, “Oh, our son is so easy to raise.” But then you realize that a two-year-old shouldn’t be just staring at a book for that long. He should be interacting with you.  So it was a mixed bag. We loved being with Sam, and he seemed healthy. But at the same time, other people who interacted with our son all the time told us, “There’s something wrong here.” So we were concerned about that.

Pretty early on, we thought autism was a possibility, but we would also say, well maybe Sam just has a language delay. Maybe he needs an aide at the day care center and he’ll be fine. When the psychologist started telling us his conclusions, he was saying, “Sam has some difficulty interacting with the world, and he has delay in his language, and there are a lot of things that are hard for him that are not hard for typical kids.” And my wife was going, “Oh yeah, yeah, uh-huh, OK, I can deal with that.” But then he said “autism.” That shook her. That’s the power of that word.

Of course, the word autism didn’t change anything about Sam, or how he was three months before we heard that word, or five minutes before we heard it. It’s the fear built up around the word that we both felt. At the moment we heard the word autism, it was kind of surprising, even though looking back on it, it’s obvious that’s what the diagnosis would be.
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Autism, Vaccines, and Community: Straight Talk with Seth Mnookin

By Steve Silberman
Posted: March 8, 2011
Seth Mnookin

Seth Mnookin, author of "The Panic Virus"

Two things that the anti-vaccine movement offers to parents of kids with Autism Spectrum Disorder that the pro-vaccine forces generally don’t, Seth Mnookin says, are answers and a supportive community.

As the author of The Panic Virus, a compelling history of the misguided rebellion against one of the most significant medical breakthroughs of the 20th century, Mnookin is acutely aware that no reputable study has linked vaccines — or mercury-based preservatives like thimerosal — to autism in children. On the contrary, the many researchers who have looked for such a link have failed to find one. The alleged “answers” offered by the anti-vaccine community are often illusory, he points out.

But for parents struggling with their child’s diagnosis and disability, a network of people eager to listen to fears and practical concerns about raising a kid on the spectrum can help relieve profound feelings of isolation.

The Panic Virus is a must-read for anyone interested in how rumors, conspiracy theories, and misinformation can drown out the cautious voices of evidence-based medicine in the age of he said/she said media, when “safe vaccine” advocate Jenny McCarthy touts medical expertise earned at “the University of Google.”

Chronicling the events following gastroenterologist Andrew Wakefield’s now-infamous 1998 press conference in London implicating the MMR vaccine  – based on a 12-case series that has been retracted by the editors of The Lancet and branded “an elaborate fraud” by the British Medical Journal — Mnookin brings to light the fabrications that ignited a global firestorm of fear about vaccines.

Aided by a scandal-hungry press and credulous talk-show hosts eager to ladle on the kerosene, the blaze of paranoia sparked by Wakefield’s lies resulted in plummeting immunization rates in the UK and the resurgence of childhood afflictions like the measles, previously kept at bay.

Jenny McCarthy on Oprah

Jenny McCarthy touts her education at the "University of Google"

Mnookin’s book is scathing in its condemnation of the media’s failure to promptly scrutinize Wakefield’s unethical research methods and blatant conflicts of interest, including a patent filing for an alternate measles vaccine formulation months before announcing the results of his study. For a long time, Wakefield successfully deflected criticism from his peers by presenting himself as an embattled visionary — a hero putting himself on the line for parents of autistic kids when heroes were desperately needed.

One of the reasons that Wakefield was able to pull this off is that the history of vaccine development is more troubled than some anti-”anti-vaxxers” are eager to admit. To Mnookin’s credit, he doesn’t whitewash this complex and occasionally shameful history. The Panic Virus includes vivid accounts of the Cutter incident, in which several thousand babies were injected with live polio virus by accident, and the 1976 swine-flu debacle, in which hundreds of recipients of a vaccine for an epidemic that never materialized became ill with Guillain-Barré virus, resulting in 25 deaths.

But Mnookin is also very clear on the fact that passing laws to make the decision to vaccinate a matter of individual conscience — as some parents’ groups are demanding — could fatally weaken herd immunity and reopen the door to the kind of mass epidemics that regularly swept the globe until the mid-20th century, killing and maiming millions. To a freshly mutated H1N1 virus in the wild, all unvaccinated kids are in the same community: lunch.

Thankfully, Mnookin writes with compassion of the predicament of parents frustrated by the lack of definitive knowledge about what has caused their son’s or daughter’s disability. Though the genetic basis of most cases of ASD is well established (the author of a major study published last week, Peter White, estimates that there may be “hundreds of genetic pathways” to autism) science has yet been unable to pinpoint the environmental trigger that tips the balance in susceptible children — if, indeed, one exists at all. The fact that identical twins who share the same genes are usually, but not always, “concordant” for ASD leaves open the possibility that some precipitating factor in the environment has eluded detection.

As the father of a 15-month-old boy, Mnookin says he can relate to the feelings of parents who are frightened for their children’s safety  – particularly when they’re encouraged by a flood of fear-mongering books like David Kirby’s Evidence of Harm and a steady trickle of lazily unreported news stories that keep Wakefield’s hoax alive.

“It’s tempting to place the blame for the state of affairs squarely on the shoulders of people like Andrew Wakefield,” Mnookin writes. “But that’s the easy way out: Wakefield may have provided the spark, and any number of other charlatans and hucksters might have fanned the flames, but it’s the media that provided — and continues to provide — the fuel for this particular fire.”

I spoke with Mnookin about ways that the media could have been smarter in handling the Wakefield story, why recent attacks on the integrity of science and scientists pose a major threat to public health, and how the “autism community” — often portrayed in the press as a monolithic group of enraged Jenny McCarthyites — is a more diverse and open-minded group than stereotypes suggest.

Steve Silberman:  Was there a moment in your reporting when you could relate to the fear that some parents feel about vaccines, despite multiple studies showing that vaccines and the mercury-based preservative thimerosal do not cause autism?

Seth Mnookin: I felt it viscerally when my son got sick with croup, which makes infants gasp for breath and sound like they’re suffocating. We were up all night in the bathroom with our son, running the shower with the window open. The next morning, we called the doctor’s office.  They said they’d get back to us in a half an hour, but they didn’t. We finally got an appointment and a prescription, but they wrote it wrong — which we only figured out after we filled it.  By then, the doctor’s office was closed again.

They told us the prescription was for three doses, but the total amount was for less than one. So we didn’t know which figure they’d gotten wrong.  We were trying to get in touch with the doctor after hours, while trying to look up the proper dose for my son’s weight. I did everything I was supposed to do, but I just had this moment like, “Doctors just go about their business — they don’t give a shit about what we’re going through! My kid sounds like he’s choking to death!”

Obviously, croup is not chronic. It doesn’t even last a week. I’m certainly not comparing it to autism. But I did feel like, “How can I trust that the doctor is going to do the right thing tomorrow?” I knew I was being irrational. Even doctors are human and make mistakes. But that was the moment that I felt the anger some parents are going through, particularly those who have kids on the severe end of the spectrum. Doctors basically tell them, “We have no idea what we can do to help your child.”

I think that’s what makes the anti-vaccine movement appealing to a lot of people. Tying autism to vaccines is almost secondary to “Here’s this community that holds out the possibility of answers to all the questions I’ve been wanting answers for.”


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Hidden Light: The Visual Language of an Autistic Photographer

By Steve Silberman
Posted: February 9, 2011
Magnuson Park, Seattle, February 10

Magnuson Park, Seattle, February 10

The playful symmetry of fin-shaped sculptures on grass. Sun bright on ivory petals framed in blue water and sky, or exploding through a lacy armature of branches. Seattle-based photographer Forrest Sargent says that he uses his camera to uncover the “hidden light” in things.

Meanwhile Sargent, who is just 20 years old, shines his own hidden light through these haunting images. Strappingly handsome, six foot two, and profoundly autistic, he is unable to speak in the usual way. When he tries, he utters a cacophony of sounds that have clear meaning to him but to no one else. Until just a couple of years ago, even Sargent’s parents were unsure how much was going on inside the mind of their son.

It turned out to be a lot.

Buddha, Flower World, Maltby WA

Buddha, Flower World, Maltby WA

Sargent was born in Tokyo. When he turned two, his mother and father — Denny, a linguist and college professor, and Rebecca, an artist — brought him to Korea on vacation. After seeing the child run into a temple, clap his hands, and bow before an altar, a priest told his parents that their son was a reincarnated Buddhist, and presented them with a set of beads to give him when he got older.

A few months later, however, Sargent abruptly withdrew into himself and began throwing tantrums that terrified his parents. A pediatrician blamed his condition on Rebecca, accusing her of being a “refrigerator mother” — a cruel reference to Bruno Bettelheim’s thoroughly debunked theory of autism being caused by emotionally distant parenting. A specialist confirmed the pediatrician’s diagnosis of autism, and a long and difficult journey began for both the boy and his parents.

Karen and Robert's Farm, Forrest's birthday, 2010

Karen and Robert's Farm, Forrest's birthday, 2010

Denny and Rebecca tried everything to help their son, from a smorgasbord of psychiatric drugs to homeopathy, hydrotherapy, and blessings from a Tibetan priest. The only thing that seemed to cool his rages was a gluten-free and casein-free diet. But even that stopped working once the storms of puberty hit.

Sargent would become so angry — biting and scratching anyone in reach — that he left a patchwork of scars on his father’s body and sent his mother to the emergency room. Denny and Rebecca tried to keep their son at home while they sought various forms of support, but they found themselves overwhelmed.

“We were completely heartbroken, but we could no longer keep Forrest here,” Denny says. “He had basically destroyed our house.”

After a long search, the couple found a place for their son in a group home in Seattle. But then the home was shut down when some neighbors protested that they didn’t want a facility like that in their backyard. For years, Sargent bounced from one institution to another, on an ever-changing roller-coaster of meds that made him even more unstable.

One night a couple of years ago, attendants at another group home phoned 911, strapped Sargent to a gurney, and dispatched him to a psychiatric hospital catering to older homeless alcoholics, where he was locked in a padded cell.

“Forrest was in hell,” says Denny. “We went to the hospital and they told us, ‘We don’t know autism.’”

Volunteer Park, February 2011

Volunteer Park, February 2011

Luckily, by that point, Denny and Rebecca had found a way to communicate with their son. They went to Texas to learn a technique for teaching non-verbal autistic kids how to form words by pointing to a letterboard, known as the Rapid Prompting Method. RPM was developed by the mother of a witty non-verbal young man named Tito Mukhopadhyay, who is now the author of books like The Mind Tree and How Can I Talk If My Lips Don’t Move?

The method is controversial. Critics point out that RPM is expensive and lacks independent verification of efficacy. But Denny believes it was a breakthrough for his son. “For the first time in his life,” he recalls, “Forrest was able to articulate a preference to us beyond ‘juice’ and ‘peepee.’”

And what his son wanted was a camera.

Richmond Beach cliff walk, March 2010

Richmond Beach cliff walk, March 2010

Sargent enjoyed hiking in the mountains and parks of the Pacific Northwest. But with his digital Nikon, he could show other people what delights him, what catches his eye, and what he thinks is beautiful. The result is a torrent of marvelous, quirky, vivid, poignant images that offer a view of the world that “neurotypicals” rarely get to see — a non-verbal autistic mind from the inside, looking out.
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Category: Art, Asperger Syndrome, Autism, Drugs, Genetics, Interview, Multimedia, Neurodiversity, Neuroscience, Photography, Science | Tagged , , , , , , | 45 Comments

The Meal that Ended My Career as a Restaurant Critic

By Steve Silberman
Posted: January 19, 2011
Grimod de La Reyniere

Grimod de La Reynière, the father of food criticism

It’s easy to imagine that being a restaurant critic would be one of the best jobs on Earth — particularly when millions of people are eager to churn out lengthy reviews for free on sites like Yelp and Chowhound.

As someone who was the food critic for a glossy magazine in San Francisco in the 1980s and quit, however, I can tell you that being a roving palate-for-hire is a mixed blessing. While dining out is one of life’s most enduring pleasures (and is certainly a rare privilege on a planet where one in six people are starving), having to eat in restaurants several nights a week, while manufacturing an opinion about every bite, can get to be a drag.

Of course, at first, being a critic in one of the great restaurant cities on Earth felt like getting paid to have sex with someone you love.


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Why Can’t the Heroic Intern Who Saved Giffords’ Life Get Married in Arizona?

By Steve Silberman
Posted: January 10, 2011
David Hernandez on CNN

Congressional intern Daniel Hernandez on CNN

Daniel Hernandez, the 20-year-old college junior who saved Rep. Gabrielle Giffords’ life by tending to her wounds until the ambulance arrived after Saturday’s horrific shooting, doesn’t consider himself a hero. “Doing something one-off is not heroic,” Hernandez told a reporter. “I think the heroes are people like Congresswoman Gabrielle Giffords.”

His behavior after gunfire rang out in front of a Tucson supermarket where Giffords was hosting a meet-your-representative event, however, is the very definition of selfless sacrifice. Hearing sharp reports from Jared Lee Loughner’s 9mm Glock, Hernandez ran toward the sounds. Seeing more than a dozen people, including a 9 year old girl, bleeding on the ground, he used his high school training as a nurses’ assistant to check their pulses. Realizing that Giffords had been shot in the head, he took the gravely wounded Congresswoman in his lap and cradled her to keep her from choking as supermarket employees brought out clean aprons to stanch the flow of blood from her wounds.

It took half an hour for the EMTs to arrive, surely the longest 30 minutes of Giffords’ and Hernandez’s time on Earth. But if the Congresswoman survives, she won’t have to look far to find the young gay Latino who saved her life. Hernandez began interning in Rep. Giffords’ office only last Monday, though he has known and respected her for years.

Did I say the G-word? I did. Hernandez is not merely gay — he’s proudly, vocally, forthrightly, politically actively gay, as he informed a Texas newspaper over the weekend, adding that Rep. Giffords is “a great ally to the LGBT community.”

In other words, Hernandez is precisely the kind of rare hero who would have been discharged from the military under Don’t Ask, Don’t Tell, the regulatory kluge that Hernandez’s senator, John McCain, defended in an inarticulate, sputtering rage on the floor of U.S. Congress just before a majority of his fellow senators voted to repeal it a couple of weeks ago.
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Meet the Ethical Placebo: A Story that Heals

By Steve Silberman
Posted: December 22, 2010

Irving Kirsch, photo by Bo Tenberg

Irving Kirsch at the University of Hull, photo by Bo Tenberg

A provocative new study called “Placebos Without Deception,” published on PLoS One today, threatens to make humble sugar pills something they’ve rarely had a chance to be in the history of medicine: a respectable, ethically sound treatment for disease that has been vetted in controlled trials.

The word placebo is ancient, coming to us from the Latin for “I shall please.” As far back as the 14th Century, the term already had connotations of fakery, sleaze, and deception. For well-to-do Catholic families in Geoffrey Chaucer’s day, the custom at funerals was to offer a feast to the congregation after the mourners sang the Office for the Dead (which contains the phrase placebo Domino in regione vivorum, “I shall please the Lord in the land of the living”). The unintended effect of this largesse was to inspire distant relatives and former acquaintances of the departed to crawl out of the woodwork, weeping copiously while praising the deceased, then hastening to the buffet. By the time Chaucer wrote his Canterbury Tales, these macabre freeloaders had been christened “placebo singers.”

In modern medicine, placebos are associated with another form of deception — a kind that has long been thought essential for conducting randomized clinical trials of new drugs, the statistical rock upon which the global pharmaceutical industry was built. One group of volunteers in an RCT gets the novel medication; another group (the “control” group) gets pills or capsules that look identical to the allegedly active drug, but contain only an inert substance like milk sugar. These faux drugs are called placebos.

Inevitably, the health of some people in both groups improves, while the health of others grows worse. Symptoms of illness fluctuate for all sorts of reasons, including regression to the mean. Since the goal of an RCT, from Big Pharma’s perspective, is to demonstrate the effectiveness of a new drug, the return to robust health of a volunteer in the control group is considered a statistical distraction. If too many people in the trial get better after downing sugar pills, the real drug will look worse by comparison — sometimes fatally so for the purpose of earning approval from the Food and Drug Adminstration.

For a complex and somewhat mysterious set of reasons, it is becoming increasingly difficult for experimental drugs to prove their superiority to sugar pills in RCTs, which was the subject of an in-depth article I published in Wired called “The Placebo Problem,” recipient of this year’s Kavli/AAAS Science Journalism of the Year award for a magazine feature.

Only in recent years, however, has it become obvious that the abatement of symptoms in control-group volunteers — the so-called placebo effect — is worthy of study outside the context of drug trials, and is in fact profoundly good news to anyone but investors in Pfizer, Roche, and GlaxoSmithKline. The emerging field of placebo research has revealed that the body’s repertoire of resilience contains a powerful self-healing network that can help reduce pain and inflammation, lower the production of stress chemicals like cortisol, and even tame high blood pressure and the tremors of Parkinson’s disease.

Jumpstarting this network requires nothing more or less than a belief that one is receiving effective treatment — in the form of a pill, a capsule, talk therapy, injection, IV, or acupuncture needle. The activation of this self-healing network is what we really mean when we talk about the placebo effect. Though inert in themselves, placebos act as passwords between the domain of the mind and the domain of the body, enabling the expectation of healing to be translated into cascades of neurotransmitters and altered patterns of brain activity that engender health.

That’s all well and good, but what does it mean in the real world of people getting sick? You can hardly expect the American Medical Association to issue a wink and a nod to doctors, encouraging them to prescribe sugar pills for seriously disabling conditions like chronic depression and Parkinson’s disease. Meanwhile, more and more studies each year — by researchers like Fabrizio Benedetti at the University of Turin, author of a superb new book called The Patient’s Brain, and neuroscientist Tor Wager at the University of Colorado — demonstrate that the placebo effect might be potentially useful in treating a wide range of ills. Then why aren’t doctors supposed to use it?

The medical establishment’s ethical problem with placebo treatment boils down to the notion that for fake drugs to be effective, doctors must lie to their patients. It has been widely assumed that if a patient discovers that he or she is taking a placebo, the mind/body password will no longer unlock the network, and the magic pills will cease to do their job.

Now, however, a group of leading placebo researchers — including Irving Kirsch at the University of Hull in England (who I interview at length below) and Ted Kaptchuk at Harvard — has produced a little bombshell of a study that makes these assumptions obsolete. For “Placebos Without Deception,” the researchers tracked the health of 80 volunteers with irritable bowel syndrome for three weeks as half of them took placebos and the other half didn’t. A painful, chronic gastrointestinal condition, IBS is serious business. It’s one of the top ten reasons why people seek medical care worldwide, accounting for millions of dollars a year in health care expenditures and lost work-hours.

In a previous study published in the British Medical Journal in 2008, Kaptchuk and Kirsch demonstrated that placebo treatment can be highly effective for alleviating the symptoms of IBS. This time, however, instead of the trial being “blinded,” it was “open.” That is, the volunteers in the placebo group knew that they were getting only inert pills — which they were instructed to take religiously, twice a day. They were also informed that, just as Ivan Pavlov trained his dogs to drool at the sound of a bell, the body could be trained to activate its own built-in healing network by the act of swallowing a pill.
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