What Kind of Buddhist was Steve Jobs, Really?

Kobun Chino Otogawa, Steve Jobs' Zen teacher.

One reason I was looking forward to reading Walter Isaacson’s new biography of Steve Jobs was my hope that, as a sharp-eyed reporter, Isaacson would probe to the heart of what one of the few entrepreneurs who really deserved the term “visionary” learned from Buddhism.

By now, everyone knows the stories of how the future founder of Apple dropped acid, went to India on a quest for spiritual insight, met a laughing Hindu holy man who took a straight razor to his unkempt hair, and was married in a Zen ceremony to Laurene Powell in 1991. I was curious how Jobs’ 20-year friendship with the monk who performed his wedding — a wiry, swarthily handsome Japanese priest named Kobun Chino Otogawa — informed his ambitious vision for Apple, beyond his acquiring a lifetime supply of black, Zen-ish Issey Miyake turtlenecks.

Isaacson does a fine job of showing how Jobs’ engagement with Buddhism was more than just a lotus-scented footnote to a brilliant Silicon Valley career. As a young seeker in the ’70s, Jobs didn’t just dabble in Zen, appropriating its elliptical aesthetic as a kind of exotic cologne. He turns out to have been a serious, diligent practitioner who undertook lengthy meditation retreats at Tassajara — the first Zen monastery in America, located at the end of a twisting dirt road in the mountains above Carmel — spending weeks on end “facing the wall,” as Zen students say, to observe the activity of his own mind.

Why would a former phone phreak who perseverated over the design of motherboards be interested in doing that? Using the mind to watch the mind, and ultimately to change how the mind works, is known in cognitive psychology as metacognition. Beneath the poetic cultural trappings of Buddhism, what intensive meditation offers to long-term practitioners is a kind of metacognitive hack of the human operating system (a metaphor that probably crossed Jobs’ mind at some point.) Sitting zazen offered Jobs a practical technique for upgrading the motherboard in his head.

The classic Buddhist image of this hack is that thoughts are like clouds passing through a spacious blue sky. All your life, you’ve been convinced that this succession of clouds comprises a stable, enduring identity — a “self.” But Buddhists believe this self this is an illusion that causes unnecessary suffering as you inevitably face change, loss, disease, old age, and death. One aim of practice is to reveal the gaps or discontinuities — the glimpses of blue sky — between the thoughts, so you’re not so taken in by the illusion, but instead learn to identify with the panoramic awareness in which the clouds arise and disappear.

Chögyam Trungpa Rinpoche in the early '70s

Chögyam Trungpa Rinpoche in the early '70s.

One of the books that inspired Jobs to become interested in this process was Cutting Through Spiritual Materialism by Chögyam Trungpa Rinpoche, a Tibetan lama who led a group of monks over the Himalayas in the 1950s to escape the invading Chinese army. Isaacson doesn’t do much more with Trungpa than name-check the title of his book, but he was a fascinating and controversial figure in his own right. After being recognized as the reincarnation of a great lama as a boy, Trungpa fled his home country and went to the British Isles, eventually graduating from Oxford. He began teaching in the traditional style at a meditation center in Scotland, complete with maroon robes, a shaved head, and vows of celibacy and sobriety; one of his early students went on to become the chameleonic pop star David Bowie.

After a nearly fatal car crash — driving into a joke shop after being distracted by a billboard, no less — Trungpa scrapped his old approach to teaching. He realized that the trappings of being a Tibetan lama were an unnecessary barrier to reaching the widest possible audience for Buddha’s revolutionary message. He jettisoned the robes, grew out his hair, eloped with the brilliant teenage daughter of a high-born British family, and emigrated to America, where he soon found legions of hippies who had reached the limits of psychedelic insight and were eager for teachings on the nature of mind from a deep-rooted contemplative tradition.

Trungpa became a hugely popular and influential teacher, praised (rightly) for his brilliant exposition of esoteric concepts in fresh, unsentimental, idiomatic English; and fiercely criticized (also rightly) for his heavy drinking and flamboyant womanizing. From his home base in Boulder, where he established a contemplative university called Naropa, Trungpa became the spiritual advisor to many counterculture luminaries, including poet Allen Ginsberg, author Ken Wilber, and singer/songwriter Joni Mitchell, who portrayed him (accurately) in a song on her haunting Hejira album called “Refuge of the Roads.”

I suspect that one of the things that Jobs found inspiring about Trungpa’s writing — beyond its bracingly direct tone and surgical deconstruction of the lies that prevent us from seeing things as they are — was his profound respect for artists, poets, and musicians, whom he saw as fellow warriors against delusion (which he called “neurosis,” adopting the lexicon of Western psychology.) This passage of Trungpa’s, from an essay on “dharma art,” could have been a blueprint for Jobs’ uncompromising vision for Apple:

Our attitude and integrity as artists are very important. We need to encourage and nourish the notion that we are not going to yield to the neurotic world. Inch by inch, step-by-step, our effort should wake people up through the world of art rather than please everyone and go along with the current. It might be painful for your clients or your audience to take the splinter out of their system, so to speak. It probably will be quite painful for them to accommodate such pressure coming from the artist’s vision. However, that should be done, and it is necessary. Otherwise, the world will go downhill, and the artist will go downhill also.
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Category: Art, Books, Buddhism, Cancer, Culture, History, Media, Mindfulness, Personal computing, Psychedelics, Technology | Tagged , , , , , , , , , , , , , | 233 Comments

What’s the Most Important Lesson You Learned from a Teacher?

Keith Karraker with a model of a DNA molecule

Keith with a model of a DNA molecule. Photo by Steve Silberman.

Five mornings a week, Keith gets up before dawn, puts on one of his geekiest bow ties (think Space Invaders, DNA helices, and daVinci’s Vitruvian Man), and drives half an hour down the freeway to teach teenagers about the wonders of science and the rigors of the scientific method at a local high school.

It’s a demanding life with little downtime. Keith’s evenings and weekends are often consumed by lesson planning and other school-related activities, but he’s perpetually stressed out about whether he’s doing enough for his kids. With his Ph.D. in chemical engineering from Berkeley — one of the top five such programs in the country — he could triple his schoolteacher’s salary by taking a job as a bench scientist at DuPont or Exxon-Mobil, as many of his fellow Berkeley grads have done.

But Keith has a passion for teaching. He lives for those moments when he can help a student make sense of the world through science. (He’s also my husband.)

People who make the career choices that Keith did don’t get a lot of respect these days. In endless discussions of “the crisis in education,” teachers are routinely described as burned out, bumbling, underqualified, and unfit — particularly if they belong to a union. In his new book Class Warfare, aspiring education reformer Steven Brill calls school districts “the most lavishly funded and entrenched bureaucracies in America… supported by an interest group — the teachers’ unions — which [have] money and playbooks every bit as effective in thwarting the public interest as Big Oil, the NRA, or Big Tobacco.”

It’s as if we’ve collectively decided that anyone who devotes his life to standing at the head of a classroom, when salaries are so low and school budgets are being slashed, can’t be that smart after all — an insidious legacy of the era when teaching was one of the few acceptable occupations for women.

Conversely, teachers who are clearly effective are portrayed as exceptional: self-sacrificing superheroes who single-handedly boost their students’ scores on standardized tests with little regard for such mundane concerns as a living wage, job security, health benefits, and adequate class resources. Meanwhile, billionaire venture capitalists like PayPal founder Peter Thiel advise young entrepreneurs to drop out of college altogether as a “bad investment” and get down to the serious business of raising capital in their teens — as if a wide-ranging education was just another expendable item on a spreadsheet.

While reading this moving NPR story about a neurosurgeon who phoned his high-school science teacher to express his gratitude after performing a tricky operation, it struck me how rarely we hear from accomplished people about the debt they owe to their teachers. The words of a true teacher stay with us a long time, offering wise counsel in a confusing world and a potent inoculation against foolishness. Yet we rarely get to thank them explicitly. Perhaps only in mid-life, we realize that the career path we chose was set, at least in part, by the recognition, praise, or clarifying criticism of a respected teacher when we were young.

Photo by Black Vanilla

Classroom photo by Black Vanilla.

In that spirit, I’ve asked some of the brightest folks I know in science and media to answer this simple question: What’s the most important lesson you learned from a teacher?

 

I’m delighted to report that a wide range of writers and thinkers were eager to share their stories. Among those who pay tribute to their most influential teachers here are two bestselling authors, Rebecca Skloot and Deborah Blum; the brilliant culture critic Mark Dery; award-winning science journalists David Dobbs, Amy Harmon, and Hillary Rosner; cognitive psychologist Uta Frith, the pioneer of autism research who translated Hans Asperger’s original paper; and several of the most perceptive and prolific bloggers around, including Maggie Koerth-Baker of BoingBoing, Geoff Manaugh of BLDGBLOG, and Ed Yong of Not Exactly Rocket Science. It turns out that by asking people that simple question, you open floodgates of memory and understanding.

If you feel inspired after reading these marvelous, charming, and occasionally terrifying tales from the classroom, please consider Googling up a memorable teacher and sending them an email to tell them what you’re up to now and express your appreciation. I guarantee that doing so will improve your day and profoundly touch the heart of someone who helped guide you into the world. Life is brief.

One of my favorite stories about a teacher’s enduring impact comes from Pulitzer prize-winning poet Gary Snyder, the real-life model for the hero of Jack Kerouac’s novel The Dharma Bums, and one of the first American students to study Zen in Japan. Snyder’s teacher there was a tough old monk who delivered his lengthy discourses on Buddhadharma in such a soft voice that his students strained to hear them, struggling to stay awake on their meditation cushions.

Years later, Snyder ran into one of his fellow students from his days in Kyoto, who was by then a senior monk himself. The monk told the poet, “Remember those talks rōshi gave that no one could hear? I’m beginning to hear them now.”

Rebecca Skloot

Rebecca Skloot is the author of The Immortal Life of Henrietta Lacks and a writer for Popular Science magazine.

As people who’ve read The Immortal Life of Henrietta Lacks know, I first learned about Henrietta and her amazing HeLa cells in a basic biology class when I was 16 years old. My teacher, Mr. Defler, wrote Henrietta’s name on the chalk board and told us she was a black woman. That was it, and class was over. I followed him to his office saying, “Who was she?  Did she have any kids? What do they think about those cells?”  He told me no one knew anything else about her.  ”But if you’re curious,” he told me, “go do some research, write up a little paper about what you find and I’ll give you some extra credit.”  At that point I was planning to be a veterinarian — something I’d been determined to do since I was a small child.  I had no intention of becoming a writer. I looked for information about Henrietta but didn’t find anything, so I didn’t write that extra credit paper. But I never forgot about her — in fact, I was a bit obsessed by her.
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Category: Art, Autism, Books, Buddhism, Education, Journalism, Media, Poetry, Science, Science Writing, Women, Writers | 43 Comments

Dear United Airlines: I Want My Kindle, and My Dignity, Back

"Tough luck, sucker! Sincerely, United Airlines"I recently flew from SFO to JFK on the first leg of a trip for book research. My three-part itinerary on United Airlines — all domestic flights — cost me $1334 in total for coach seats, even with an advance purchase. Of course, that impressive price tag didn’t include many amenities that used to come gratis with air travel, such as a hot meal even on shorter flights, the ability to check bags without paying an extra fee, or a reasonable expectation of arriving on schedule.

The metaphor of frogs that don’t notice the water around them is getting warmer until it’s boiling (and they’re cooked) is only an urban legend, say the vigilant debunkers at Snopes.com — but it’s an apt image for today’s frequent flyers. Schlepping their carry-ons through security mazes, standing shoeless with arms outstretched in bleeping machines, shrugging off dramatic confiscations of shampoo and toothpaste, and frantically rejiggering carefully-plotted itineraries at a moment’s notice, we’ve come to accept the current state of affairs as just another way that life sucks in the post-9/11 era. Never mind that I’m old enough to recall when a cross-country trip on an airplane, even in economy class, offered an opportunity to unwind and feel coddled in the lap of luxury for a few hours with a stratospheric view. Now I look forward to flying about as much as I look forward to a trip to the dentist.

Unlike the constitutionally enraged audience of Fox News, however, it’s not TSA pat-downs that bug me. I’d be flattering myself to believe there’s anything prurient about some guy in a rented uniform having to touch my middle-aged junk. I’m sure that feeling around in the waistbands of science bloggers for plastique is not what most TSA agents had in mind when they signed on for the job.

It’s the casually contemptuous attitude of the airline industry toward its customers in the face of snowballing inconveniences that I find soul-crushing. Formerly courteous gate agents now have the wary look and defensive manner of IRS agents who are accustomed to being convenient targets of hate and ridicule. Flight canceled or hours late? Routine. Connecting flights missed? Happens all the time. Massively oversold? That’s just how we roll. Bag gone missing despite a $50 handling fee? Fill out this form over there, sir — there’s a line of passengers behind you.

Not until my most recent trip, however, did I realize that the airline industry’s reckless attitude is conspiring with developments in the technology of personal computing to breed a new kind of nightmare in the formerly friendly skies.
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Category: Books, Culture, Journalism, Personal computing, Technology, Travel | Tagged , , | 163 Comments

An Eye-Opening Adventure in Socialized Medicine

Karl Marx, M.D.

Dr. Marx will see you now (image by Keith Karraker)

I woke up in a rented room in London in the middle of the night, feeling like my eyes had been packed with hot sand and the lids were somehow glued together. When I pried them apart, the whites of my eyes were an angry crimson.

Maybe it was nothing. I’d been told that the pollen counts in the UK this summer are sky high. A raging heat wave in a city that doesn’t really do air-conditioning (like my gloriously fogbound town of San Francisco) didn’t seem to be helping. But when I squinted in the bathroom mirror, I saw a greenish-white discharge collecting around my tear ducts. This looked like more than a bad case of hay fever.

Then I remembered that one of the cognitive psychologists I’d come to London to interview mentioned that she’d recently had a bad eye infection. I Googled “conjunctivitis.” It dawned on me that the bottle of water I drank in her office may have been a mixed blessing.

Great Portland Street station

Great Portland Street Tube station

But what to do? I was far from home with lots of work to do and no idea how to see a doctor locally. Thankfully, I didn’t have any appointments for a couple of days, and have health insurance from Kaiser-Permanente through my spouse’s employer. But I knew that getting reimbursed for treatment by a doctor outside the Kaiser network can be complex; what about an out-of-country doctor?

When I dialed the 800 number on my Kaiser card to find out what to do, an automated voice from AT&T informed me that I would be billed at the standard international calling rate of $1 a minute. After navigating a maze of call-center prompts, I sat on hold for 15 minutes.

The first Kaiser rep who took my call fired off a barrage of questions. Was I experiencing “blind spots, double vision, floaters, hallucinations, or any other problems” with my vision?  Yes — the goopy discharge from my tear ducts was making it hard to see, and I said so. But that turned out to be the wrong answer. The Kaiser rep simply repeated her question in a more brittle tone of voice and added, “Just answer yes or no.”

Yes, I was having problem with my vision, but not “double vision, floaters, or hallucinations.”  Judging by the structure of the question, I suspected that it was designed to fish for a different sort of problem than the one I had, such as evidence of entopic phenomena that might indicate something awry inside the eyeball, or even in the brain. I didn’t want to end up shunted onto the wrong track in the voicemail maze. “Floaters, hallucinations, and double-vision, no,” I explained,  ”but problems with my vision yes, because the discharge from my tear ducts…”

Sir,” she cut me off sternly. “These are yes or no questions. Answer either yes or no or I will not be able to help you.” I furiously tried to calculate which falsely binary oversimplifications were the right ones.

Conjunctivitis

Then back to limbo at $1 a minute. Finally an advice nurse picked up. She ran me through a nearly identical gantlet of questions — hadn’t my previous answers been logged into the database? — but unlike the previous insurance rep, the advice nurse could handle nuance. Given the severity of my symptoms, she told me, I should certainly certainly see a doctor right away — as soon as I had secured permission for an out-of-network exam with someone at the member-services line on the other side of my Kaiser card.

It was 2 in the morning in a strange country and my eyes were oozing green goo, but at least I was getting somewhere. I called the other number, navigated another maze of prompts, and waited. Tick, tick, tick.

Thankfully, the member-services rep was both efficient and sympathetic. Of course, she said, it must be upsetting to be having eye problems far from home. I should definitely go to a local clinic. But before she could give me permission to do that, she would have to talk to her supervisor, because she’d never dealt with someone having a medical problem outside the country before. Several minutes passed.

Then, good news from the supervisor — with one caveat. Yes, I should go see a doctor at a local clinic. But because this was all happening out-of-network, I would have to pay out of pocket. As long as I made sure to obtain all the necessary receipts and forms, however, I could submit them when I got home, and Kaiser would “open a case file” on me so I could be reimbursed.

I wondered how much the visit would cost me up front — $200, $500, $1000? The unfavorable exchange rate had already vacuumed out my wallet, just picking up Chunky Hummus Salad wraps and “flat white” coffees at Pret A Manger. But it didn’t matter.  My eyes needed help now, and I was almost certainly highly contagious; I didn’t want to pass this mess on to anyone else.

The member-services rep then explained that a Kaiser doctor would be calling me within the next four hours to give me additional information. I asked her gently if the doctor could possibly call in the morning London time, because I was already sleep-deprived and had a lot of work to do the following day. Sorry, she replied, that was just not possible. The doctor would have to call within the four-hour window allotted for my case — even if that meant the phone ringing at 5 in the morning.

Still, I was grateful to finally have permission to seek the care that I desperately needed. I called a number I found on the Web for urgent care in Marylebone, the central London neighborhood where I’d found a semi-affordable place to stay for three weeks. Amazingly, a human being picked up the phone right away — an affable guy with a disarmingly chummy accent and an empathic manner. Yes, yes, of course I should see a doctor right away. Where should they send him?

What? This guy was offering to dispatch someone to examine my eyes immediately in my apartment in the middle of the night?

I couldn’t even remember the last time I’d gotten a house call from a doctor — was it when I had chicken pox in 3rd grade? I expressed my astonishment. The chap on the other end of the line just laughed: I assure you, it’s no problem.
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Category: Bacteria, Ethics, Health, Politics, Science, TV | Tagged , , , , , , , | 149 Comments

Practical Tips on Writing a Book from 23 Brilliant Authors

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 , , , , , , , , , , , , , , , , , , , , , | 235 Comments

Why the GOP Hates the National Science Foundation

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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Category: Journalism, Media, Politics, Science, Sexuality, Social networks, War | Tagged , , , , , , | 43 Comments

Woof! John Elder Robison, Living Boldly as a “Free-Range Aspergian”

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 ofrecovering” 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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Category: Asperger Syndrome, Autism, Books, Ethics, Genetics, Health, History, Interview, Neurodiversity, Photography, Science, Science Writing, Technology, Writers | Tagged , , , , | 51 Comments

The Plot to Turn On the World: The Leary/Ginsberg Acid Conspiracy

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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Category: Art, Books, Drugs, Gay, History, Interview, Multimedia, Poetry, Politics, Psychedelics, War, Writers | Tagged , , , , , , , , , | 15 Comments

“Loving Lampposts,” A Groundbreaking Documentary About Autism, Love, and Acceptance

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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Category: Asperger Syndrome, Autism, Ethics, Film, Genetics, Interview, Neurodiversity, Science | Tagged , , , , , , , | 38 Comments

Autism, Vaccines, and Community: Straight Talk with Seth Mnookin

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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Category: Asperger Syndrome, Autism, Bacteria, Biology, Books, Ethics, Genetics, Health, Interview, Journalism, Media, Memory, Neurodiversity, Neuroscience, Politics, Science, Writers | Tagged , , , , , , , | 61 Comments