What I Learned from My Autistic Son: A Guest Post by Brenda Rothman

By Steve Silberman
Posted: April 1, 2013
Jack Rothman and his parents, Brenda and Steve

Jack Rothman and his parents, Brenda and Steve

Introduction by Steve Silberman: Six years ago, the United Nations declared April 2 to be World Autism Awareness Day. For most of the 20th Century, autism was rarely talked about in public, because the psychiatric establishment — led by a psychologist and popular author named Bruno Bettelheim, considered the preeminent authority on the subject in the 1960s — blamed the condition on the emotional trauma of being raised by a cold, unloving mother. The “refrigerator mother” theory was utterly discredited long ago as an elaborate fraud, and autism is now understood to be a life-long disability caused by complex interactions between genes and the environment. Autistic people and their families are still subject to stigma, however, in part because many of the organizations that view Autism Awareness Day as a fundraising opportunity use fear-mongering language like Autism Speaks’ oft-repeated refrain that “more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.”

In an age when it’s common to make the casual, even flippant observation that the guy in engineering or the socially awkward character on TV is “on the spectrum,” it’s hard to imagine that just 40 years ago, few pediatricians, special-education teachers, and therapists had even heard of autism. There was no spectrum. “Infantile autism,” as the condition was known at the time, was considered a very rare malady of childhood, in part because it was so narrowly defined. Children with intellectual disability (then called “mental retardation”) were excluded from a diagnosis by Leo Kanner, the child psychiatrist that discovered autism in America in the 1940s. Autistic children who could use speech were often diagnosed with something else, like childhood schizophrenia. Adults were never considered for a diagnosis of infantile autism, and teenagers who would now be diagnosed as having Asperger syndrome or PDD-NOS were said to have “residual autism” by the handful of specialists in the country who could recognize it.

That landscape changed radically in the 1980s and 1990s, when the diagnostic criteria were dramatically broadened to include the full breadth of what we now call the spectrum. The debunking of Bettelheim and his ilk freed families to talk about autism candidly and openly, and a brave generation of parents took up the cause of advocating for their children’s needs. In those days, promoting autism awareness was an effective remedy for years of silence and shame.

But that’s not where we are now. Our society is not only “aware” of autism, it’s obsessed with the subject. Unfortunately, though, this obsession is often misdirected. Instead of worrying about what families of autistic people are supposed to do when the services and support devoted to children run out after high school, or how autistic adults themselves are supposed to lead happy and productive lives without access to employment and health care, we perseverate about the latest theories of autism causation. Did you see the news that older grandfathers may contribute to autism risk? Have you heard the rumor that living near a freeway is somehow related to autism? Did you see the thing about mothers who take antidepressants or fail to take folic acid supplements? Have you read the story in the New York Times about that new inflammation theory? It’s enough to make young couples think twice about having a kid at all.

If you even skim autism headlines, you’re familiar with all of these things. But here’s something you may not have heard: only a tiny fraction of the money donated to fundraising organizations like Autism Speaks in April goes to making the lives of autistic people and their families happier, healthier, and more secure. Most of the money raised during high-profile promotional campaigns like Light It Up Blue goes to major universities and laboratories to fund research into the latest cause du jour.

I’m in favor of funding smart and ethical research. By studying autism, we’ve learned very valuable things about genetics, human development, and how the brain works. But if the hidden cost of this education is panic-inducing language that further stigmatizes autistic people and their families, it’s a bitter pill. That’s why I recently signed a pledge from the Autistic Self-Advocacy Network to only participate in public events that include autistic people offering an inside perspective of the reality of their own lives.

Three years ago, a professional book indexer and choirmaster at her church in Virginia named Paula Durbin-Westby, who is on the spectrum herself, decided to “take back” April 2 and devote it to autism acceptance, rather than mere awareness. By promoting the notion that autism is a life-long disability rather than a “disorder” or an “epidemic,” and stressing the fact that people at all points on the spectrum have valuable gifts to offer society as well as significant challenges in daily life, she hoped to refocus society’s efforts on initiatives that will help autistic people and their families succeed, such as the development of new, affordable technologies to enable communication for people who have difficulty using speech.

Last year for Autism Acceptance Day, I yielded this space to autistic self-advocates like Paula, blogger Lydia Brown, and aikido instructor Nick Walker, and parent-allies like Forbes science writer Emily Willingham, to make suggestions for social changes that could dramatically improve the lives of autistic people of all ages. This year, I am proud to feature a prominent parent blogger with a background in health law, Brenda Rothman, to talk about what she’s learned by raising her son, Jack.

When Jack was a baby, he was diagnosed with classic autism, and is still developmentally delayed in many ways. But at 8 1/2, he is a handsome, sweet, tirelessly curious boy who notices minute details in keys, cars, and architecture, and can recall them easily. He enthusiastically designs and directs family projects like building a replica of Lincoln’s funeral train car, and loves bowling, old fire engines with no cabs, Kubota tractors, horses, cats, dogs, steam trains, propeller planes, presidents, and traveling.

I admire Brenda’s frankness in sharing her difficult journey of coming to peace with her son’s neurological differences. She blogs at mamabegood.blogspot.com. Brenda has also published essays in The Thinking Person’s Guide to Autism, Huffington Post, BlogHer, and Mamapedia, and advocates for supports and rights for autistic people to legislators, service providers, and educators. Please follow her on Twitter as @mamabegood.

Jack Rothman playing with a model car

What I Learned from My Autistic Son

Autism is part of my son Jack’s biology, as much as the shape of his nose and the color of his skin. I want the world to welcome him for the beautiful person he is. As a parent, an activist, and an ally of the autistic community, I want public acceptance of autistic people, not just autism “awareness.” I don’t want my son or any autistic person to be feared or pitied for a fundamental part of their being.  I don’t want Jack to feel ashamed of himself, or to have to hide who he is, to be included. That’s why I support the autistic community’s celebration of April as Autism Acceptance Month.

I didn’t come easily to this place of acceptance.  My experiences of becoming a parent and my friendships with autistic people led me to it.  So let me share with you my journey of raising my son Jack.  I’ll start way back, in the early days of my marriage.

Like every couple, my husband and I transitioned from the honeymoon stage to the reality stage, complete with arguments about toothpaste tubes and dishwasher loading.  Our ideas of what should be happening, and what was actually happening, were compounded by infertility.   After trying to work through these difficulties on our own, my husband sought professional help.  He sat on the couch with a psychiatrist who asked him, “How can I help you?”  My husband replied, “It’s my wife. She’s having a really hard time.  She’s very focused on having children.  She doesn’t want to do anything fun.  Even when we see a movie, she ends up crying.”  My husband looked at the psychiatrist holding his pen and pad.  The psychiatrist replied, “Well, now we know why your wife should be here.  Why are you here?”

This flawed perception that this other person has a problem, and that we have to fix them, became the central focus in my experience of marriage, parenting, and disability.  The moment we identify the problem as residing in the other person is when we need to examine ourselves.  I had to go through that lesson many times before I got it.   Back then, I thought all I needed were the rules on how to fix the problem.  Tell me the rules, I’ll learn them, and then I can fix what’s wrong with that person.

With my rules in one hand, I sat down in my first college philosophy class.  If you really want to mess with a rules-based person, put them in a philosophy class. The professor began discussing different ways of perceiving the world.  Should we follow Plato’s theory of perfect forms or Aristotle’s concept of a happy average between bad choices?  Should we subscribe to Descartes’ theory of knowing only through our minds, not our bodies, or to Hume’s theory that we can never know anything for certain?  I sat at my desk, completely confused, thinking desperately, “Those aren’t rules! Where are the rules? I just need the rules!”

Philosophy gave me an initial glimpse of the truth that life isn’t about learning the rules to fix other people’s problems, but I soon got over it. I went to law school, which made sense for someone who wanted rules and control.  The law is a finite set of rules and lawyers just tell you what those rules are, right?  Wrong. Law school teaches you to question the rules.  It demands that you think critically about rules, about behavior, about authority.  It requires you to question yourself, your own thinking, and your own beliefs.

After this kind of education in critical thinking, you’d think I would have finally got it.  I didn’t.  But life was about to give me a big lesson.
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Category: Asperger Syndrome, Autism, Health, Media, Neurodiversity, Science, Writers | 10 Comments

Music to Write By: 10 Top Authors Share Their Secrets for Summoning the Muse

By Steve Silberman
Posted: November 15, 2012
J.S. Bach

Bach: “I was obliged to be industrious. Whoever is equally industrious will succeed equally well.” (Image used with permission of Dave Grossman: http://www.jsbach.net/bass )

 

Writing is a hell of a way to make a living. It only seems easy to those who haven’t tried it. I’ve somehow managed to survive that way for the past 20 years or so — for richer and for poorer — and still don’t know how my favorite authors, journalists, and bloggers manage to pull it off with such verve and panache. Sometimes, being a writer feels like getting paid to pull a rabbit out of a hat over and over again — but each time it has to be a new breed of rabbit, “miraculously” emerging from a different style of hat.

Days under the spotlight that I reach into the fraying dark with sweaty fingers, and feel warm fur, are good days. Other days, it’s nothing but hat in there; but I say “Voilà!” with a practiced flourish anyway and hope the audience doesn’t notice that the alleged rabbit is just a tattered old stuffed thing, a patchwork made to twitch by sleight-of-hand.

But writers have their secrets and rituals for courting the fickle favor of the Muse. For some, it’s sitting in a certain chair at the right time of day — or getting out of familiar surroundings to type busily away in a café filled with people that might someday be readers. For others, it’s a brisk walk in the open air. Or it’s potions; woe to the poet who finally decides to undertake her epic sestina sequence only to discover that her cupboard is bare of aged Sumatra.

And for many writers, one way to evoke that elusive flow-state of inspiration is music.

Not, mind you, just any music. I love me some Elvis Costello, but trying to eke out an apt phrase while being throttled with the thesaurus of his post-coital tristesse would be impossible. A writer needs a soundtrack that arouses the desire for articulation while denying its consummation by anyone else’s genius.

In my own search for the perfect music to write by, I’ve been through many phases. For a while, Miles Davis’ In A Silent Way did the job. Recorded just before Bitches Brew established voodoo funk as the tenor of the times, In A Silent Way was the freshly electrified Miles band with Herbie Hancock, Wayne Shorter, John McLaughlin, and others swinging madly — but in a magisterially laid-back groove. It strikes just the right mood and tempo for my work: both meditative and locomotive, as if the music is always going on somewhere, even after the album ends.

Miles Davis

Miles Davis: “Don’t play what’s there. Play what’s not there.”

These days, while I’m confined to my glorious prison-cum-monastery for months working on my book NeuroTribes: Thinking Smarter About People Who Think Differently, Steve Reich’s astonishing Music for 18 Musicians is helping me stay on track. I still remember the first time I heard 18, walking into Recycled Records on Haight Street in San Francisco in 1979 and asking the cute music geek behind the counter (who is now my friend on Facebook — life is wonderfully strange) “What is this music?”

It sounded like electronic music, but was played on all acoustic instruments. By way of Balinese gamelan and African drumming, Reich found a way to do with marimbas, pianos, and human voices what Bach did with lutes, flutes, and chamber orchestras: use math and precision (in this case, pulses of strict time cycling in and out of phase) to reveal the source code of the Universe as blissful symmetry, “Infinite Diversity in Infinite Combinations,” as the Vulcans say. Voilà!

If you ever get the rare chance to see 18 performed live, don’t miss it. It’s one of the great experiences available on the planet. And Reich’s “Music for Mallet Instruments, Voices, and Organ” is similarly radiant, but only about a quarter as long.

Like anxious stage magicians, writers are constantly peering into each others’ hats to try to learn each others’ tricks. Here, I make that process explicit by asking some of the best writers in the business — in genres ranging from non-fiction, to long-form journalism, to poetry, to science blogging — to tell my readers about the musical wiles they employ to seduce their Muse. By hearing great writers talk about what they listen to while they do their work, we learn a lot about how they feel about the craft of writing itself. I’m grateful that master craftsmen and craftswomen like David Quammen, David Dobbs, and Carl Zimmer (three of my favorite science writers), August Kleinzahler and Jane Hirshfield (two of the greatest poets in America, whose work couldn’t be less alike), and ace science bloggers like Ed Yong were generous enough to share their secrets with my readers.

To my fellow writers: May your dapper old hat be filled with a clamoring of rabbits, leaping through your fingers as your readers gasp, grateful to be amazed one more time.

 

John Schwartz

Photo by Steve Boxall (http://www.steveboxall.com), used with permission.

John Schwartz

John is a reporter for the New York Times and the author of a new book about raising his gay son, Oddly Normal.

Asking about my taste in music is scary; like the playwright in Tom Stoppard’s The Real Thing, who agonizes over his choices for “Desert Island Discs,” knowing that it could kill his reputation if people knew that his musical tastes ran to The Monkees singing “I’m a Believer” and the Crystals singing “Da Doo Ron Ron.”

But I can’t resist. Music is one of the sustaining parts of my life; when I think no one can hear, I’ll sing along with “I’m a Believer” — which is, after all, a wonderful song! — and with everyone from James McMurtry to Moxy Fruvous, the Austin Lounge Lizards to Joe “King” Carrasco. Much of my playlist reflects my Texas roots, but I love anyone whose lyrics inspire me to write more vividly, to pack more in, to be smarter.

But I don’t write with music on. I’m too easily distracted. I wrote my latest book, Oddly Normal, from an Adirondack chair in my living room, mostly in the silence of the house after the rest of the family went to bed. If I could type in a sensory deprivation floatation tank, I would, except I always fell asleep in those. Music is for the sidewalks and the car, at least when I’m not listening to audiobooks. It all keeps me a little sharper than I otherwise would be. It keeps the muse amused.

Jane Hirshfield

Jane Hirshfield

A current chancellor of the Academy of American Poets, Jane also uses a great deal of science (biology, physics, paleontology, geology) in her seven books of poems, most recently Come, Thief.

When I was young, I always wrote with music on. This probably had something to do with growing up in New York City: there was a lot of background distraction I wanted to block, and I had to make some privacy for my ears in that crowded existence. What I listened to was all over the map, Judy Collins, classical Spanish guitar, Miles Davis’s Kind of Blue. Then a few years of living without any music at all (I was in a monastery deep in the wilderness, without electricity or heat) ended that habit. Now I write only in silence, and want for the background of my writing awareness a John Cage-like sound-space that governs itself. But some number of my recent poems take household tasks as a starting metaphor–they mop the floor, clean mushrooms, cook soup, wash doorknobs–so I offer some of the music I put on these days when housecleaning: David Byrne’s Look Into the Eyeball, anything by Habib Koite & Bamada, Bob Dylan’s Modern Times, Gillian Welch’s The Harrow and the Harvest.

David Quammen and Tasmanian devil

David Quammen

David is the author of a new book on the next human pandemic, Spillover.

Music to write by?  I’d love to give you some juicy personal choices but the fact is: I write in silence.  Closed in my cave of an office, lined with books, very little window, no distraction by the beautiful mountains of Montana, no background music.

But I always turn on the CD player, or my Pandora app played through decent speaks, for cocktail hour.  Sit down in a chair with a martini, my wife and dogs nearby (she has red wine, they go it dry), and for about an hour each evening we read together…and listen to music, if it’s not backyard season.  What’s our background music for reading and thinking and chatting?  1) Gregorian chant 2) Chopin 3) Andres Segovia 4) Gregorian chant.  You get the idea.  I love other sorts of music too — my Pandora list includes the Gram Parsons station, the David Bromberg station, the Chopin station. etc… My favorite of all musicians is Louis Armstrong, and he makes for great foreground listening, also background for dinner parties…but too distracting for reading.  Oh, Chet Baker instrumental albums: also good for reading.


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Category: Art, Books, Culture, Journalism, Media, Music, Poetry, Science, Science Writing, Writers | 26 Comments

Five Billion Years of Solitude: Lee Billings on the Science of Reaching the Stars

By Steve Silberman
Posted: October 2, 2012
Lee Billings

Lee Billings, author of the upcoming book “Five Billion Years of Solitude”

Like many geeks of the post-Sputnik generation, I grew up hoping that space travel would be common by the time I reached middle age. Weaned on a youthful diet of speculative fiction by the likes of Ray Bradbury and Arthur Clarke, raised on Star Trek and The Outer Limits, and thrilled by real-life hero Neil Armstrong’s “one small step” onto the gravelly surface of the Moon when I was in elementary school, it never occurred to me that humankind’s manifest destiny in the stars would be undone by changing political winds, disasters like the Challenger explosion, and a mountain of debt to pay for misguided military adventures like the War in Iraq.

It’s true that, in some ways, we’re living in a new golden age for space nerds. Bard Canning’s gorgeously enhanced footage of Curiosity’s descent to Mars — made instantly available by the global network we built instead of a Hilton on the Moon — certainly beats  grainy snippets beamed down from Tranquility Base. A newly discovered exoplanet that “may be capable of supporting life” seems to make headlines every few months. Cassini’s ravishing closeups of Saturn regularly put the fever dreams of ILM’s animators to shame. But wasn’t I supposed to be “strolling on the deck of a starship” by now, as Paul Kantner’s acid-fueled hippie space epic Blows Against the Empire promised me when it was nominated for a Hugo award in 1971?

The problem, it turns out, isn’t just a loss of political will to finance manned space flight. Rocket science turns out to be rocket science — not easy, and constrained by some very real limitations dictated by material science, the physics of acceleration, and the unwieldy economics of interstellar propulsion. Until a real-life Zefram Cochrane comes along to invent a practical warp drive, I may not be sightseeing on any Class M planets anytime soon.

One of the best briefings on the state of the art of interstellar exploration is Lee Billings’ essay “Incredible Journey,” recently reprinted in a wonderful new anthology called The Best Science Writing Online 2012, edited by Scientific American’s Bora Zivkovic and Jennifer Ouellette. I’m very honored to have a piece in the anthology myself: my NeuroTribes interview with John Elder Robison, author of the bestselling memoir of growing up with autism, Look Me in The Eye, and other books. When SciAm’s editors suggested that each author in the book interview one of the other authors, I jumped at the chance to interview Billings about his gracefully written and informative article about the practical challenges of space flight. Billings is a freelance journalist who has written for Nature, New Scientist, Popular Mechanics, and Seed. He lives outside New York City with his wife, Melissa.

Cover, The Best Science Writing Online 2012

“The Best Science Writing Online 2012″

Steve Silberman: Before we even get into the meat of your piece, I want to mention how impressed I was by the power and lyricism of your writing. Phrases like “the cosmos suddenly becomes less lonely” and “the easiest way the Daedalus volunteers found to fuel their starship was, in effect, the industrialization of the outer solar system” make vast and highly abstract concepts immediately comprehensible and visceral to lay readers. What made you want to become a science writer, and who are your role models for writing, in any genre?

Lee Billings: My attraction to science preceded my attraction to the act of writing, perhaps because, like every child, I was intensely curious about the world around me. Science, more so than any other source of knowledge I could find, seemed to change the world into something at once eminently understandable and endlessly mysterious.

I became interested in science writing, science journalism, at approximately the same time I realized I would make a poor scientist. I was midway through my college prerequisites, thinking I was on a path to a career in neuroscience. I’d been having a lot of trouble with the more quantitative courses — calculus, organic chemistry, and so on. Many of my friends would ace their assignments and tests after sleeping through lectures and rarely cracking a book. I would study hard, only to receive poor grades. Meanwhile I was breezing through courses in English, literature, history, and art. After a particularly fervent all-night cram-session for a final exam that I still almost flunked, I decided if I wasn’t destined to excel within science itself, perhaps I could instead try to make my mark by helping communicate the world-changing discoveries scientists were making. So I switched my academic emphasis from neuroscience to journalism, and became something of a camp follower, scavenging and trailing behind the gifted few at the front lines of research. I’ve never looked back, and have no regrets. The job never gets old: Rather than being at best a mediocre, hyper-specialized bench worker, being a science writer lets me parachute in to varied fields on a whim, and invariably the brilliant individuals I find upon landing are welcoming and happy to talk to me.

As for influences… I still have a long way to go, but if my writing ever comes to possess a fraction of Carl Sagan’s charisma and elegance, John McPhee’s structure and eye for detail, Richard Preston’s depth of focus and cinematic flair, Stanislaw Lem’s imagination and analytic insight, or Ray Bradbury’s lyrical beauty, I will be a happy man.

Ray Bradbury's "The Martian Chronicles"

Ray Bradbury’s “The Martian Chronicles”

Silberman: Several times a year now, we hear about the discovery of a new exoplanet in the “Goldilocks zone” that could “potentially support life.” For example, soon after he helped discover Gliese 581g, astronomer Steven Vogt sparked a storm of media hype by claiming that “the chances for life on this planet are 100 percent.” Even setting aside the fact that the excitement of discovering a planet in the habitable zone understandably seems to have gone to Vogt’s head at that press conference, why are such calculations of the probability of life harder to perform accurately than they seem?
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Category: Exoplanets, Interview, Journalism, NASA, Politics, Science, Science Fiction, Science Writing, Space flight, Travel | Tagged , , , , | 11 Comments

Are Warnings About the Side Effects of Drugs Making Us Sick?

By Steve Silberman
Posted: July 16, 2012
Patient receiving a vaccine. Photo by Flickr user Noodles and Beef.

Photo by Flickr user Noodles and Beef.

Your doctor doesn’t like what’s going on with your blood pressure. You’ve been taking medication for it, but he wants to put you on a new drug, and you’re fine with that. Then he leans in close and says in his most reassuring, man-to-man voice, “I should tell you that a small number of my patients have experienced some minor sexual dysfunction on this drug. It’s nothing to be ashamed of, and the good news is that this side effect is totally reversible. If you have any ‘issues’ in the bedroom, don’t hesitate to call, and we’ll switch you to another type of drug called an ACE inhibitor.” OK, you say, you’ll keep that in mind.

Three months later, your spouse is on edge. She wants to know if there’s anything she can “do” (wink, wink) to reignite the spark in your marriage. She’s been checking out  websites advertising romantic getaways. No, no, you reassure her, it’s not you! It’s that new drug the doctor put me on, and I hate it. When you finally make the call, your doctor switches you over to a widely prescribed ACE inhibitor called Ramipril.

“Now, Ramipril is just a great drug,” he tells you, “but a very few patients who react badly to it find they develop a persistent cough…” Your throat starts to itch even before you fetch the new prescription. Later in the week, you’re telling your buddy at the office that you “must have swallowed wrong” — for the second day in a row. When you type the words ACE inhibitor cough into Google, the text string auto-completes, because so many other people have run the same search, desperately sucking on herbal lozenges between breathless sips of water.

In other words, you’re doomed. Cough, cough!

Coughing man

Photo by Flickr user Jeff and Colin.

What’s going on here? Just medicine-as-usual in a world where valuable drugs have annoying side effects and conscientious health professionals do their best to protect their patients from unpleasant (and potentially litigious) surprises? Sure. But a provocative new report by Winfried Häuser, Ernil Hansen, and Paul Enck in the journal of the German Medical Association suggests that the side effects of some drugs, and the discomfort of certain medical procedures, may be inadvertently intensified by doctors and nurses trying to keep patients fully informed of the consequences of their medical care. The culprit behind this phenomenon is the nocebo effect.

You can think of the nocebo effect as the evil twin of the placebo effect — the body’s healing response to the act of taking a pill or receiving medical care, even if the pill itself is inert. The most familiar example of the placebo effect is what happens in trials of experimental drugs. One group of volunteers is randomly assigned to take the drug in question; another group is assigned to take placebo — a fake drug designed to look just like the real one. Neither the volunteers nor the staff know which group is which. If the drug group improves significantly more than the placebo group, the drug is judged to be effective. This kind of test — the double-blind, placebo-controlled trial — has been the gold standard of drug development in medicine for half a century.

In real life, gauging the effectiveness of a new medication is not quite that easy. In 2009, I wrote a widely-circulated article in Wired magazine about a mysterious increase in placebo effects in trials in recent years that is making it harder for Big Pharma to bring new drugs to market. I explored some of the reasons that might be happening in the article.

A placebo, you might say, is an ersatz drug that makes you feel better, while a nocebo is a fake drug that makes you feel worse. Of course, in both cases, it’s not the pill that’s doing the work; it’s your own body, responding to the social context in which you take the pill. If a skilled doctor with kindly bedside manner tells you that drug X will reduce the inflammation of a minor injury, it often will — even if the drug itself is nothing but a capsule full of lactose, milk sugar. One of the astonishing things we’ve discovered about the placebo effect in recent years is how wide a range of ailments can be ameliorated by it, at least temporarily — from chronic pain, to high blood pressure, to inflammation, to depression and anxiety, to sexual dysfunction, to the nausea and vomiting caused by chemotherapy. Perhaps unsurprisingly, it turns out that the nocebo effect is equally capable of making you feel more miserable, in a similarly broad range of ways.

One of the most interesting findings in the new report from Germany is about the underappreciated — and under-studied — role of nocebo effects in clinical trials.

If you tell a group of trial volunteers that they’re testing a new drug that may relieve the pain of migraines, a significant number of volunteers will experience pain relief after taking the drug — even if they’ve been randomly assigned to the placebo group and are receiving nothing but sugar pills. The placebo effect in action.

But here’s where it gets interesting.  If you tell the volunteers that the side effects of this new medicine may include dry mouth, tingling in the hands and feet, and slight dizziness, some volunteers will experience precisely these side effects — in both groups. In fact, some volunteers who are taking nothing but sugar pills will be made so uncomfortable by these symptoms that they will choose to drop out of the trial early.
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Category: Culture, Drugs, Ethics, Health, Nocebo effect, Placebo effect, Science, Social networks | Tagged , , , , , | 22 Comments

Autism Awareness is Not Enough: Here’s How to Change the World

By Steve Silberman
Posted: April 2, 2012
"The Structure of Flame" by Jessy Park

"The Structure of Flame" by autistic artist Jessica Park. Courtesy of Pure Vision Arts: http://purevisionarts.org

In 2007, the United Nations passed a resolution declaring April 2 World Autism Awareness Day — an annual opportunity for fundraising organizations to bring public attention to a condition considered rare just a decade ago.

Now society is coming to understand that the broad spectrum of autism — as it’s currently defined, which will change next year with the publication of the DSM-5 – isn’t rare after all. In fact, “autism is common,” said Thomas Frieden, Director of the U.S. Centers for Disease Control and Prevention, last week in a press conference. The subject of the conference was a new CDC report, based on 2008 data, that raised the official estimate of autism prevalence among children in the United States from 1 in 110 to 1 in 88.

The CDC’s announcement brought out the usual range of conflicting responses and disputes about causes and cures. Mark Roithmayr, president of the fundraising organization Autism Speaks, immediately branded the report proof of an “epidemic,” though Frieden and other experts were careful to point out that the apparent increase was likely “the result of better detection,” rather than a true spike in the population of autistic kids.

That theory is bolstered by two recent studies in South Korea and the United Kingdom, which suggest that autism prevalence has always been much higher than the estimated 1-in-10,000 when the diagnostic criteria were much more narrow and exclusionary. What’s changed now is that — in addition to the radical broadening of the spectrum following the introduction of diagnostic subcategories like Asperger’s syndrome and PDD-NOS – clinicians, teachers, and parents have gotten much better at recognizing autism, particularly in very young children. That’s actually good news, because by identifying a child early, parents can engage the supports, therapies, modes of learning, and assistive technology that can help a kid express the fullest potential of their unique atypical mind.

No matter where you stand on the rising numbers, there is one undeniably shocking thing about them. Once that 1-in-88 kid grows to adulthood, our society offers little to enable him or her to live a healthy, secure, independent, and productive life in their own community. When kids on the spectrum graduate from high school, they and their families are often cut adrift — left to fend for themselves in the face of dwindling social services and even less than the meager level of accommodations available to those with other disabilities.

Meanwhile, the lion’s share of the money raised by star-studded “awareness” campaigns goes into researching potential genetic and environmental risk factors — not to improving the quality of life for the millions of autistic adults who are already here, struggling to get by. At the extreme end of the risks they face daily is bullying, abuse, and violence, even in their own homes.

On March 6, a handsome, friendly, 22-year-old athlete in Sunnyvale, California named George Hodgins was shot by his mother Elizabeth, who then turned the gun on herself. The bodies were found by George’s father Lester, a Bay Area park ranger. The horrific crime became a cause célèbre in the media and the special-needs blogosphere — one that focused primarily on speculation about the kind of suffering that could have driven a mother to such a desperate act. George was posthumously diagnosed in the news as “low functioning and high maintenance,” and sometimes his name wasn’t even mentioned in the ensuing discussion, as if the young man was a bystander at his own murder.

Vigil for George Hodgins

Vigil for George Hodgins, Sunnyvale CA

In response, an autistic self-advocate in California named Zoe Gross organized a vigil on March 16 for disabled victims of family violence like George. Holding candles aloft under a tent pitched at Sunnyvale City Hall, autistic men and women of all ages — along with parents and allies from the disability-rights community — read the names of those who had been killed, with a poignant eulogy for the disabled victims of the Nazi eugenics campaigns that paved the way for the Holocaust. As drizzling rain fell around the warmly-lit tent, George’s former teachers at the Morgan Autism Center shared vivid memories of an energetic boy who loved listening to music and getting in the pool to swim. Instead of painting him as little more than a source of anguish and grief for his mother, who was struggling with her own psychological issues, they recalled him as a sweet, cheerful, engaged, and enthusiastic student who used assistive technology to communicate.

For autistic activists like Gross and Paula C. Durbin-Westby, a professional book indexer and choirmaster at her Episcopal church in Virginia, Autism Awareness Day is not a cause for celebration. In their eyes, the dire messaging designed to frighten wealthy donors into opening their wallets every April 2 — such as the infamous 2009 ”I Am Autism” video, which framed the condition as a terminator of marriages that works “faster than pediatric AIDS, cancer, and diabetes combined” – reinforces dangerous negative stereotypes and increases the stigma faced by autistic adults, most of whom don’t wake up in the morning yearning for a cure or wishing that their peers on the spectrum had never been born. Instead, members of groups like the Autistic Self-Advocacy Network look forward to an era when their community no longer faces violence at home or discrimination in the workplace, in housing, in education, in the legal system, in health care, and in society at large.

Two years ago, Durbin-Westby proposed that autistic people and their families and friends recast April 2 as an occasion for promoting acceptance and understanding rather than vague “awareness,” and reclaim the day as an annual opportunity to celebrate their community’s diversity and vitality. ”I started Autism Acceptance Day as a corrective to the ubiquitous negative images we see every April,” she recalls. “The first World Autism Awareness Day referred to autism as an ‘equal destroyer.’ From videos that talk about autism as some sort of soul-sucking demonic persona, to 150 empty strollers signifying that autism has robbed parents of their toddlers, navigating April for many Autistics has been like walking through a field of (stroller-shaped) land mines. No more! Autism Acceptance Day takes back April and puts it where it belongs — into the hands of Autistic people, supportive family members, friends, and communities.”

Durbin-Westby’s notion of rebranding April 2 in a more positive and proactive light is catching on with local autism advocacy groups worldwide. The Autism Society of Northern Virginia recently declared April to be Autism Acceptance Month, and other groups are getting onboard via social networks like Facebook and Twitter.

Obviously, even a month of acceptance will not be enough to dramatically improve the lives of people on the spectrum. What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults  – now, starting today?

That’s the question I posed to a group of self-advocates, parents, and teachers that included Nick Walker, an autistic aikido master who founded his own dojo in Berkeley; the first openly autistic White House appointee, Ari Ne’eman; Emily Willingham, one of the sharpest science writers in the blogosphere; Lydia Brown, a prolifically articulate and thoughtful 18-year-old self-advocate at Georgetown University; Todd Drezner, director of Loving Lampposts, a groundbreaking documentary on autism and neurodiversity from a father’s perspective; and the editors of Thinking Person’s Guide to Autism, which is my personal recommendation for parents to read after their son or daughter’s diagnosis.

The ideas generously offered here — from outlines for education and public-policy reform, to calls for more 24-hour businesses and innovative assistive technology, to persuasive arguments from the trenches for transformations of attitude — are a road map to a more equitable neurodiverse society that will help all 88 out of 88 kids to maximize their creative potential.

Lydia Brown

Lydia Brown

Lydia Brown is an Autistic student at Georgetown University who interns for the Autistic Self Advocacy Network. She blogs at Autistic Hoya.

1. Accept us. Autism is a part of who we are. As sure as skin color or sexual orientation, we cannot change being Autistic. Acceptance starts by understanding that we are not broken, defective, or diseased. We do not need to be fixed or cured. There is nothing wrong with us. Yes, autism is a disability, and yes, some Autistic people are very severely disabled. Accepting our autism does not mean ignoring or denying disability; it means accepting us for who we are, as we are.

2. Respect us. We are people, fellow human beings. We deserve to be treated with the same respect afforded to our non-Autistic peers. Respect starts by understanding that we are full and complete human beings, with individual personalities, life experiences, goals, and preferences. We deserve an education, access to communication, and a place in society as we become adults. We deserve to live without fear of being abused, manipulated, or hurt. We are not less than.

3. Support us. Because we are disabled in varying degrees and in multiple ways, we need support, services, and accommodations to successfully navigate a world not made for us. Supporting us starts by understanding that we are usually the people who can best define what types of support and services we need, especially once we become adults. Some of us may need services throughout school and or higher education. Some of us need help with seeking and keeping employment. Some of us need help with living independently or semi-independently, or with activities of daily life. Without appropriate supports, we will not have equal access and opportunity.

4. Include us. We deserve equal access and opportunity throughout the community and throughout our lifespans. Inclusion starts by understanding that we are part of the community and deserve to be included in it. As children, we may not be ready immediately for full inclusion, but full inclusion should be the ultimate goal for every Autistic child. Full integration into the community means living outside institutional or segregated settings and working outside a segregated setting. If we need accommodations or support to fully participate in the community, then provide those accommodations. We need to belong.

5. Listen to us. Too many conversations about us and issues that affect our lives take place without any of us present. Listening starts by recognizing that we have valid, legitimate, and important things to say about our lives and about the issues that affect us collectively. Like any group of people, we are not homogeneous in opinion or ideology, and this diversity is part of the Autistic community. Yet we must be included in any conversation about us, because decisions made by policymakers, school administrators, and grant reviewers often impact our daily lives and our future outlook. We can speak (or write or sign or type) for ourselves, and it’s time to listen.

Shannon and Leo Rosa

Shannon and Leo Rosa

Shannon Des Roches Rosa is the mother of an autistic son and an editor of Thinking Person’s Guide to Autism. She blogs at Squidalicious.

1. Watch movies about real autistic people. We need to uproot and replace the Rain Man as a cultural stereotype. Most autistics are not savants — and most autistics are not like most other autistics. I recommend Todd Drezner’s Loving Lampposts as the autism movie that everyone should see; it showcases the wide-ranging and complex abilities of people on the autism spectrum.

2. Be a role model of autism understanding in everyday life. Autistic behaviors like flapping and humming may not make sense to strangers, but they almost always have a function for an autistic person. If you see a person like my son behaving quirkily in a public place, it’s OK to smile and nod — especially to model that understanding and acceptance for kids. (We will move on if our behaviors become disruptive!)

3. Welcome us. Many autistics and autism families feel isolated, even within their extended families and immediate communities. If you aren’t sure what we need or how to include us, ask! We would so much rather be asked — even if we need special arrangements, even if we might have to leave early, even if we have to say no — than never get included at all.

4. Seek autism-friendly autism education resources. When looking for autism education resources, ask yourself: does this agency, book, or website support and respect autistic people and their families? If the answer is “no,” then go elsewhere — no matter how well-established, funded, reviewed, or popular the resource is. I direct people to The Autistic Self-Advocacy Network, Rethinking Autism, Wrong Planet, and Thinking Person’s Guide to Autism as starting points.

5. Demand support for autistic adults transitioning out of school. Autistic people, like anyone else, deserve the best possible quality of life — yet there is no comprehensive infrastructure to support their transition out of school and into the real world; not at my home state of California’s level, not at the federal level. The transition can be especially harrowing for autistics who need significant day-to-day support. My son and his peers deserve better.

Carol and Arren Greenburg

Carol and Arren Greenburg

Carol Greenburg is an autistic self-advocate, a consultant for families of kids with special needs, and mother of an autistic son.

1. Respectful autism awareness cards widely available commercially so I don’t have to keep reinventing this wheel for the material I hand people introducing my son or myself. Nothing long-winded or rude, but a teaching moment should not have to start with an apology for autistic behavior.

2. Whatever your own neurostatus, put yourself on a 30-second pause before you react to somebody whose public behavior you find off-putting.

3. Require autism awareness training with the input of autistic self-advocates for every single educator in the US, not just special Ed teachers. I’ve heard this is done in Japan, why can’t other countries follow suit?

4. More retailer sensitivity toward customers with sensory issues. It would be nice if the staff in restaurants and stores would show greater willingness to dim lights and turn down music. Sensory seekers like my son can find loud environments and control their personal music volume. Sensory avoiders like me can’t go inside many public venues.


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Breaking the Habits that Enslave Us: Q&A with Charles Duhigg

By Steve Silberman
Posted: March 20, 2012
Charles Duhigg, author of "The Power of Habit"

Charles Duhigg, New York Times reporter and author of "The Power of Habit"

For a species obsessed with free will, choices, and options, we spend a surprising amount of time acting like zombies. We’re already sipping our morning coffee before we notice we’ve navigated to the kitchen on automatic pilot. We pull our smart phones from our pockets while the friend beside us says something that deserves our full attention. We can be halfway to the bar before we ask ourselves if we truly need another drink.

Indeed, we spend more than 40 percent of our precious waking hours engaged in habitual actions [PDF], according to a 2006 study at Duke University. Welcome to the machine.

That’s one reason noxious habits like smoking, overeating, and meth addiction are so hard to break. Once the behavior that perpetuates them is set in motion, the voice of willpower utters its dissent too faintly and too late. It’s as if our brains store habitual behavior in a locked box to prevent tampering by the more mindful angels of our nature — even at the cost of our health, our self-respect, our reputations and jobs, our marriages, and our personal survival.

In his provocative and brilliantly written new book, The Power of Habit, Charles Duhigg — a reporter for the New York Times — pries open the box with the help of recent research and finds surprising good news: Even the most thoughtless and self-destructive cycles of behavior can be changed, if you understand how habits are formed and stored in memory.

Duhigg breaks down the sequence of ritualized behavior (which he calls the habit loop) into three component parts: the cue, the routine, and the reward. The cue is the trigger that sets the sequence in motion. Perhaps it’s a certain time of day when you tell yourself it’s time for your daily chocolate-chip cookie (that was Duhigg’s particular jones). Perhaps it’s email from your boss that makes you want to dash out for another smoke. Perhaps it’s the chiming bells and flashing lights of a crowded casino, designed to make a room full of incremental losers look like winners who are hitting jackpots all the time. The routine is the behavior itself, which can be positive (like a daily running habit) or harmful (like gambling away the family savings). And the third part is the reward — the goal of the behavioral loop, which your brain’s pleasure centers gauge to determine if a sequence of behavior is worth repeating and storing in a lockbox of habit.

A pint of butterfat and sugar with a Ben and Jerry’s label, a spurt of oxytocin when you see that @jayrosen_nyu or @ebertchicago has retweeted you, that tingling in your legs after a strenuous workout, the numbing rush of a fix, the first puffs of an American Spirit… it’s all the same to the basal ganglia, four lumps of gray matter in the forebrain that encode highly rewarding behavior for easy repetition.

Though routinized behavior is often framed in terms of the problems it can cause, Duhigg points out that habit formation is an evolutionarily keen strategy for managing the limited throughput of our conscious awareness. If we couldn’t even brush our teeth or drive without having to ponder the nuances of every action, our brains would require more real estate in decision-making areas like the prefrontal cortex. One advantage of “chunking” behavior into automatic sequences stored in memory — Duhigg tells us in a typically enlightening aside — is that our skulls can be smaller, ensuring that more mothers survive giving birth. Darwin FTW.

But when you become a slave of your most destructive habit loops — blowing through the last of the family credit at Harrah’s, or watching yourself down another half-dozen martinis like a hipster robot, though you know it’s wrecking your marriage — it’s time to make a change. Duhigg explains why our usual way of tackling the problem — telling ourselves “I’ve got to quit doing this, now!” and berating ourselves when we don’t — is often doomed to failure. Then he maps out a more effective path toward enduring habit change that focuses not on trying to scrap the routine all at once, but on becoming aware of the cues and manipulating the rewards. The encouraging news is that success in making modest alterations in behavior (which Duhigg calls “small wins”) creates a ripple effect into other areas of your life. Sometimes the most effective way to quit smoking might be to start walking the ten blocks to the office every other day instead of taking the subway. Small wins beget larger ones.

The Power of Habit transcends the self-help genre by examining ways to prompt behavior change not only in individuals, but also in organizations, multinational corporations, and society at large. One of the most fascinating sections of the book analyzes the way that Rosa Parks’ respected role in the social networks of Montgomery, Alabama provided a foundation for the triumphant 1955 boycott of segregated buses that kickstarted the modern civil rights movement. It’s a great example of how one woman’s refusal to go along with the oppressive habits of society — in a community that was ripe for change — helped transform the world.

In the wide-ranging conversation with Duhigg that follows, we talk about what inspired him to write the book, the way habits can distort your perceptions of the environment, how public-health campaigns go wrong, the factors contributing to the success of the movement for marriage equality — and how a busy New York Times reporter finally conquered his chocolate-chip cookie addiction.

Steve Silberman:  How did you become interested in habits?

Charles Duhigg:  About a decade ago, I was in Iraq. I went there because I thought it would be fun to be in a war zone. It turned out to be — not fun. I quickly discovered that one of the best ways to be in a war zone is to get to a place where people aren’t shooting at you. So I went down to a city called Kufa, about an hour south of Baghdad by helicopter. There was a major there. I found out that he had effectively stopped riots from happening in the city by influencing the habits of the crowds there. Instead of trying to tackle the job of stopping the riots in an abstract way, he banned kebab stands from the public square, and eventually the crowds just dispersed on their own. No more riots.

Silberman: That’s fascinating.

Duhigg: I thought so too. I basically had two goals when I came back from Iraq. Number one was that I wanted to learn more about the science of habits. Number two was that I wanted to lose weight. I felt powerless over my eating habits, so I figured learning about habits would be a way to do two things at once.

Silberman:  What were your most surprising discoveries about what drives habitual behavior?

Duhigg:  The first surprising thing was how malleable habits are. We’ve only really learned this in the last decade by learning about the neurology of habit formation. We’ve discovered how much habits can be changed by focusing on the three parts of what I call the habit loop: the cue, the routine, and the reward. You’re much more effective if you focus on understanding the cue and the reward. Then the problematic behavior — the routine — can be shifted much more easily.

Silberman: That’s a very different mindset from saying, as I do hourly, “Oh my God — I’ve got to lose weight! I’ve got to get in shape!” Why is it better to focus on the cue and the reward, rather than the routine itself?

Duhigg:  I think when most people think about changing their habits, they focus on the problematic behavior, on changing the habit itself. But there’s only so much willpower we can expend in a day. When someone says to themselves, “OK, I’ve got to get in shape,” that’s an almost insurmountable mountain. But if you focus on the cues and rewards, making a change is more manageable. We know from studies that almost all cues — the stimuli that elicit the habitual behavior — fall into one of five categories. It’s time of day, or a certain place, or a certain emotion, or the presence of certain people, or a preceding action that’s become habitual or ritualized. This gives us a way to create an exercise habit that doesn’t require saying “I’ve got to change my whole life” and beating up on yourself. Instead, what if you just say, “Every morning, or when I come home from work, I’m going to put on my running shoes.  I’m not even necessarily going for a run. I’m just putting on my running shoes. That’s going to be my new habit.” If you do that a couple of days a week, eventually you’re going to go running.

Charles Duhigg's "The Power of Habit"

Charles Duhigg's "The Power of Habit." Photo courtesy of Random House.

It’s little shifts. Once you start running, you’re going to get into a running habit, right? But it starts with this small win. If as soon as you get home from work, you put on your running shoes — even if you feel stupid about it! — you’re creating a cue. The benefits of that small win will start cascading through your life.

Then you focus on the rewards. The first couple of times you go running, you’re not going to enjoy it. No one enjoys it the first time they run. So you have to give yourself a piece of chocolate when you get back from the run. You have to have some immediate reward.  And we know from studies that within two weeks, the intrinsic reward of running — the endocannabinoids unleashed by exercising — are going to become enough of a reward to create that habit. But you have to trick your brain into it by giving yourself a piece of chocolate the first couple times. And it has to be a reward you really enjoy. You can’t say, “I’m going to start running, and my reward is going to be a salad and kale chips.” No one really enjoys that.

Silberman: I love that concept of small wins. Particularly your notion that the benefits of making a modest change cascade through other areas of your life — like if you start exercising regularly or eating a healthier lunch, it may become easier to quit smoking. That’s inspiring.

I’d like to talk about cues for a moment. A few years ago, I interviewed a couple of brilliant neuroscientists named Kent Berridge and Terry Robison, who study the role of dopamine in generating anticipations of pleasure. We were talking about a phenomenon they dubbed “incentive salience,” which is the way that subconscious expectations of pleasure can highlight certain stimuli in the environment — cues, as you call them in the book. A cigarette smoker can pick up the odor of an ashtray two rooms away, and it starts their nicotine craving going. An alcoholic can walk through a neighborhood, and without even being aware of it, start generating an internal map of where all the bars and liquor stores are, in case he needs to slip away for a drink later.

Duhigg: Yeah. I looked up Kent Berridge after you mentioned him to me last year. It’s really interesting stuff. In the last chapter of my book, I talk about Reza Habib, who does a lot of gambling studies. In particular, he does fMRI studies of people watching slot machines. The brains of pathological gamblers tend to react as if near-wins are wins, while the brains of non-pathological gamblers react as if near-wins are what they really are — losses. It’s a similar phenomenon to incentive salience, I think. Basically people are seeing the same thing, but they’re seeing it two totally different ways, because of what’s jumping out in their mind. It makes sense to me that if you have a cue around a certain habit, when you see an environment that has that cue in it, you’re hypersensitive to that cue. It’s going to color everything you see.

Slot machines. Photo by Flickr user ragingwire.

Slot machines. Photo by Flickr user ragingwire.

I have a couple of friends who are long-time recovered alcoholics. Sometimes I’ll be talking about taking certain paths through the city and I’ll ask one of them, “Can you tell me every bar that’s on this route?” And he’ll be like, “Yup, I can tell you where every single bar is in that area. In fact, I can tell you the route I’ll take so I have to pass as few of them as possible.”
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Inside the Mind of a Synaesthete

By Steve Silberman
Posted: February 6, 2012
"The Figure 5 in Gold," by Charles Demuth, 1928

The Figure 5 in Gold, Charles Demuth, 1928

“I have this rather freakish gift of seeing letters in color,” novelist Vladimir Nabokov told a BBC interviewer in 1962. “It’s called color hearing. Perhaps one in a thousand has that.”

The Russian-born author of Lolita, Pale Fire, and other exuberantly witty books claimed that when he was a child, he saw the number 5 as red, and that he had continued to perceive numbers and letters as having their own distinctive hues.  The interviewer asked Nabokov how the initials of his own name appeared to him. He replied:

V is a kind of pale, transparent pink: I think it’s called, technically, quartz pink: this is one of the closest colors that I can connect with the V. And the N, on the other hand, is  a greyish-yellowish oatmeal color. But a funny thing happens: my wife has this gift of seeing letters in color, too, but her colors are completely different.  There are, perhaps, two or three letters where we coincide, but otherwise the colors are quite different.

It turned out, we discovered one day, that my son, who was a little boy at the time — I think he was 10 or 11 — sees letters in colors, too.  Quite naturally he would say, “Oh, this isn’t that color,  this is this color,” and so on. Then we asked him to list his colors and we discovered that in one case, one letter which he sees as purple, or perhaps mauve, is pink to me and blue to my wife. This is the letter M. So the combination of pink and blue makes lilac in his case. Which is as if genes were painting in aquarelle.

Nabokov’s “color hearing” — a curious neurological phenomenon known as grapheme-color synesthesia — also found its way into his books. In Bend Sinister, the protagonist, Adam Krug, says that the word “loyalty” reminds him of “a golden fork lying in the sun on a smooth spread of pale yellow silk.”

In his autobiography, Speak, Memory, Nabokov launches into a virtuoso synaesthetic reverie: ”The long a of the English alphabet… has for me the tint of weathered wood, but a French a evokes polished ebony. This black group also includes hard g (vulcanized rubber) and r (a sooty rag being ripped). Oatmeal n, noodle-limp l, and the ivory-backed hand-mirror of o take care of the white… Passing on to the blue group, there is steely x, thundercloud z and huckleberry h. Since a subtle interaction exists between sound and shape, I see q as browner than k, while s is not the light blue of c, but a curious mixture of azure and mother-of-pearl.”

One of the ravishing pleasures of reading Nabokov is sensing a deep rightness in his word choices (even in English, which was his second language) that goes beyond having a knack for finding le mot juste to make his prose cohere at every level: phonetic, orthographic, and semiotic. Surely the atypical wiring of his brain gave Nabokov an advantage in his quest for this comprehensive unity.

Synaesthetic alphabet

Synaesthetic alphabet

Few writers have mapped this uncanny phenomenon with such obsessive precision, but the gift of multiplex senses turns out to be not as freakish and rare as Nabokov believed. Researchers have learned that even chimpanzees associate low notes with darker colors with high notes with brighter ones. In a recent paper in Psychological Science, David Eagelman of the Baylor College of Medicine argues [PDF link] that synaesthetic ability falls along a spectrum, the end product of multiple processes of neuronal excitation, inhibition, and pruning in the brain gone awry, “all of which happen to converge on the similar result of unusual perceptual or cognitive pairings.”

Another recent study raises the possibility that we are all born with a capacity for sensory crosstalk that diminishes as we get older and our neural networks are streamlined for greater efficiency. Nabokov also believed that we are all born synaesthetes, but because science hadn’t yet elaborated the concept of neuroplasticity, he blamed the loss of the gift on “stupid parents” telling their kids, “It’s all nonsense. An A isn’t black, a B isn’t brown. Don’t be absurd.”

In fact, however, hacking the firewalls between senses may turn out to be a useful skill that parents could teach kids who were not born that way. In an ingeniously designed blog post, Macquarie University autism researcher Jon Brock discussed a recent report by V.S. Ramachandran in Neurocase [PDF link] of a young man with Asperger’s syndrome who was instructed to associate emotions with colors to improve his social perspicacity. As he got older, the young man learned to gauge how he felt about a person by the color of the “halo” around the face.

Nabokov was not alone in his conscious employment of his gift to serve his art. Master painter and digital artist David Hockney relies on his synaesthesic abilities to generate hyper-vivid images that glow with an almost child-like visual innocence. He told author David Burton that when he was designing a set featuring the image of a tree for a production at the Metropolitan Opera of a piece by Maurice Ravel, he listened to the relevant section of the score and “the tree painted itself.”

Felled Trees by David Hockney

Felled Trees by David Hockney

Likewise, the genre-stretching jazz, folk-rock, and avant-garde music of Duke Ellington, Syd Barrett, Alexander Scriabin, and Oliver Messaien [PDF link] was allegedly energized by each composers’ bimodal perceptions. In his epic multi-volume manifesto Traité de rythme, de couleur, et d’ornithologie (“Treatise on rhythm, color and bird song”), Messiaen described chords as “blue-violet rocks, speckled with little grey cubes, cobalt blue, deep Prussian blue, highlighted by a bit of violet-purple, gold, red, ruby, and stars of mauve, black and white.”

For a drearily mono-sensory person like me, it’s tough to read these accounts without feeling a (sour-apple green?) twinge of envy. What would it be like to live in a world in which each prime number generated its own harmonics, every letter of the alphabet was associated with a characteristic odor (the freshly laundered scent of L, the fulsome perfume of Q), and Miles Davis’ “Flamenco Sketches” (on Kind of Blue, natch) shimmered like an iridescent watercolor over the heads of the bored baristas at the local coffee shop?

Color music notation

Color music notation

Now a prolific multimedia artist and writer named Perry Hall [Flash required], who was born with his own version of Nabokov’s quirky gift, has developed an iPhone/iPad app called Sonified that enables even those low on the synaesthetic spectrum to experience light, colors, and movement morphing into sounds.

I first became interested in Hall’s work seeing a series of haunting HD videos made in 2006 that he called Material Study, featuring light dancing on the surfaces of ferrofluids that surge and swell like some kind of protean lava. While convalescing from a bout of Lyme disease, Hall decided that he needed to set his synaesthesia loose in the wild, as he puts it. He and his digital collaborators developed software that siphons the luminance and color values from the video cameras in iPhones and iPads (only later-generation devices like the iPhone 4, 4S and iPad 2 will work correctly) and uses them to trigger stereo samples from a library of CD-quality audio composed for the purpose.

Photo of Perry Hall

Perry Hall, artist, synaesthete, and designer of Sonified

When Hall — who helped create the lush “painted world” sequence in What Dreams May Come, the 1998 film starring Robin Williams – told me about Sonified in email, I knew I had to try it myself. After downloading it from the App Store, I boarded a streetcar here in San Francisco, slipped on a pair of headphones, and aimed my phone out the window just as the train streaked past a row of brightly painted Victorian houses, accelerating through shafts of sunlight and shade on its way into a tunnel.

The effect of the audio-visual-kinesthetic link-up was unexpectedly profound. Instead of feeling like Sonified was imposing its digital soundtrack on the world, I felt I was accessing a layer of reality that is normally hidden from us. It was like a little dose of Morpheus’ red pill in The Matrix.
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Book of the Year: Thinking Person’s Guide to Autism

By Steve Silberman
Posted: December 19, 2011
Leo Rosa in Disneyland

Leo Rosa visits the Magic Kingdom, 2011. Photo by Mike Des Roches.

A sea-change is happening in the world of autism. Just a few years ago, the loudest voices in media coverage of the issue were those of Jenny McCarthy’s “warrior moms,” defending Andrew Wakefield’s now-discredited claim that the combined measles-mumps-rubella vaccine causes autism, while spending hard-earned income on the latest cure for their “vaccine-injured” kids — which could allegedly be found in megadoses of vitamins, chelation therapy to remove heavy metals like mercury from the body, elaborate elimination diets, home hyperbaric chambers and saunas, and untested gray-market drugs.

It’s not hard to understand what motivated these parents: Intense love and concern for their children, along with healthy skepticism of corrupt multinational corporations and government agencies that have proven themselves fully capable of covering up crimes against humanity that resulted in the injury and death of thousands. The mothers and fathers of kids on the spectrum have excellent reasons to distrust the medical establishment — notably its unquestioning acceptance of Bruno Bettelheim’s “refrigerator mother” theory in the 1950s, which cruelly blamed parents for their kids’ developmental disorders, adding shame and stigma to the challenges of raising an autistic child.

Bruno Bettelheim

Psychiatrist/author Bruno Bettelheim, whose bestselling books blamed a generation of mothers for their children's autism.

Bettelheim’s Freudian claptrap was consigned to the dustbin of pseudoscience long ago – fittingly, by the father of an autistic boy, a Navy psychologist named Bernard Rimland, who surgically dismantled Bettelheim’s imperious nonsense in his own book in 1964, establishing autism as primarily a genetic and organic, rather than psychogenic, condition. A tireless networker, Rimland also founded the National Society for Autistic Children to speed parents’ access to treatments that he felt showed promise. By doing so, he anticipated the self-empowerment of citizen scientists in the digital age.

Unfortunately, Rimland — who undertook Herculean efforts to make his own son, Mark, “normal,” as he put it — was also one of the first parent-advocates to promote Wakefield’s 1998 case series in The Lancet linking autism to vaccines. That study has since been found to have been an elaborate fraud by the British Medical Journal, disowned by its co-authors, and retracted by The Lancet. But the seeds of panic it sowed among a generation of parents are now sprouting all over the world in resurgent epidemics of childhood diseases like the measles and whooping cough, after being kept in check for decades by vaccines. Meanwhile, many of the biomedical treatments championed by Rimland have turned out to be no more effective than placebo or outright dangerous, as well as punishingly expensive for families financially stressed to the limit.

With greater understanding and another decade of research, talk of “curing” autism is fading away, though no one should dispute the need to find more effective treatments for seizures and other physical co-morbidities that some autistic people experience. Instead of obsessing about causes and cures, however, a new generation of parents is proposing something radical: loving their kids just as they are, in all their flamboyant eccentricity, the product of a distinctive kind of human wiring that likely lasts a lifetime. (Even Rimland’s loyal successor at the Autism Research Institute in San Diego, Stephen Edelson, said in a recent interview, “If a practitioner claims to ‘cure’ autism, run in the other direction.”) Instead of inspiring hopelessness, this shift has liberated many parents to embrace and even celebrate their kids’ differences, while focusing on the real challenge of helping them build healthy, happy, and independent lives in a society that provides shamefully few supports, resources, and accommodations for autistic adults.

That’s the message of several groundbreaking books and films in recent years, including Roy Richard Grinker’s Unstrange Minds, Paul Collins’ Not Even Wrong, Thomas Anderson’s Neurodiversity, Priscilla Gilman’s The Anti-Romantic Child, Tom Fields-Meyer’s Following Ezra, and Todd Drezner’s inspiring documentary Loving Lampposts.

At the same time, technological advances like the Internet and social media, text-to-speech software, visual computing, and mobile devices are opening up ways for people on the spectrum — including many who would have been written off as non-verbal or “low-functioning” in previous eras — to boldly speak out on behalf of themselves and their community. It turns out that autistic self-advocates have a lot to say about how they’ve been stereotyped, marginalized, overlooked, and demeaned by so-called neurotypical culture — even by organizations that claim to speak for them. Two of the most powerful pieces of online writing I read this year were by self-advocates whose view of their own lives is informed by the social model of disability: Julia Bascom’s “Quiet Hands” and Rachel Cohen-Rottenberg’s “The Path That Chose Me.” Self-advocates like Bascom and Cohen-Rottenberg proudly own their autistic behavior and atypical cognitive styles, casting light on the ways that monolithic concepts of normalcy oppress everyone who doesn’t fit the mold.

With this sea-change in mind, my favorite book of the year on autism was curated and self-published by a group of parent-warriors with the express purpose of sparing other parents the grief, isolation, and confusion that followed their own kids’ diagnoses. Called the Thinking Person’s Guide to Autism, it offers helpful, positive, pragmatic, evidence-based advice for making the life of your kid and your family more rewarding and more joyful, starting today. I can’t think of a better holiday gift for someone with a loved one on the spectrum. With current estimates of autism prevalence running at 1 in 110 people in the US, the book deserves a wide readership.

cover, Thinking Person's Guide to Autism

Thinking Person's Guide to Autism

Covering a wide range of nuts-and-bolts subjects — from strategizing toilet training and and planning fun family outings, to helping your kid cope with bullying, to identifying the issues that a skilled speech-language therapist can work on with your child, to spotting and avoiding “autism cults,” to navigating byzantine special-needs bureaucracies and providing your child with appropriate assistive technology, to fighting for your kid’s right to an individualized education — the Thinking Person’s Guide to Autism is bracingly free of dogma, heavy-handed agendas, and pseudoscientific woo. What distinguishes it from, say, the fine guide for parents recently made freely downloadable by the National Autism Center, is the heart, soul, fierce intelligence, and subversive wit of the authors and editors, which shines on every page. Offering observations from parents, professionals, and autistics themselves, the book is a welcome dose of optimism and uncommonly good sense.

Many guidebooks for the parents of autistic kids are dry, clinical, and relentlessly grim; by contrast, this book is about real families facing ordinary situations with grace, grit, and humor. Editors Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg are prolific bloggers and tweeters on the war-torn autism frontier every day: battling misinformation and quackery, standing up for science and evidence-based medicine, and crucially, building mutually beneficial alliances between parents and self-advocates. Their message is: We’ve been there. We know. And we want to help you become your kid’s most powerful ally while respecting and celebrating his or her unique identity.

There’s also a cheeky irreverence to the tone of the essays — many of which originated in the blogosphere — that is utterly refreshing. I can’t think of another book on the subject that would include the statement, “Children with autism are well known for masturbating in public. (And who can blame them?)”

TPGA editors Shannon Des Roches Rosa and Jennifer Byde Myers

TPGA editors Shannon Des Roches Rosa and Jennifer Byde Myers.

“My son Leo is 11 and has high-octane autism,” says Des Roches Rosa when I ask her about the genesis of the project. “I’d been blogging about parenting and autism since 2003 and writing columns as BlogHer’s contributing editor for parenting kids with special needs for a year. The reactions to my posts had been great, but I remained frustrated by the amount of negativity and flat-out misinformation pervading the Internet and traditional publishing, and worried about a constant stream of people entering the autism communities and getting misdirected or outright hoodwinked. I’d been ranting about it for a while, and so had Jennifer and Liz, so one day we just said, ‘Fuck it, someone has create a one-stop, comprehensive, evidence-based autism handbook, with perspectives from autistics, parents, and professionals.’ So we took the plunge.”
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Category: Asperger Syndrome, Autism, Culture, Genetics, Health, History, Neurodiversity, Science, Science Writing, Social networks | 53 Comments

The Sketchbook of Susan Kare, the Artist Who Gave Computing a Human Face

By Steve Silberman
Posted: November 22, 2011

Portrait of Susan Kare by R.J. Muna

Graphical interface pioneer Susan Kare, photo by R.J. Muna

Point, click.

The gestures and metaphors of icon-driven computing feel so natural and effortless to us now, it seems strange to recall navigating in the digital world any other way. Until Apple’s debut of the Macintosh in 1984, however, most of our interactions with computers looked more like this:

Command line

How did we get from there to here?

iPad photo by Ben Atkin

iPad photo by Ben Atkin, under Creative Commons license

The Mac wasn’t the first computer to present the user with a virtual desktop of files and folders instead of a command line and a blinking cursor. As every amateur geek historian knows, the core concepts behind the graphical user interface or GUI (including the icons, mouse, and bitmapped graphics) made their debut in 1968 in a presentation by Stanford Research Institute’s Doug Engelbart celebrated as the “mother of all demos.”

The revolutionary ideas in Engelbart’s demo were further developed at Xerox PARC, where a 24-year-old Steve Jobs took a legendary tour in 1979 that convinced him that the GUI represented the democratic future of computing. (“I thought it was the best thing I’d ever seen in my life,” he said later. “Within ten minutes, it was obvious to me that all computers would work like this someday.”) He promptly licensed the GUI technology he saw at work in a non-commercial product called the Xerox Alto for a modest amount of Apple stock, and the rest is Silicon Valley history.

Icon of Steve Jobs by Susan Kare, 1983

Steve Jobs, 1983, by Susan Kare

Shortly thereafter, Xerox doomed its chances to own the icon-driven future by pouring its resources into the Xerox Star, a product aimed strictly at the corporate market. Each Star purchase required an initial $75,000 installation and a network of external file servers, plus another $16,000 for each additional workstation (twice the price of a new car at the time). A digital revolution for the masses, it wasn’t.

The genius of Steve Jobs, Jef Raskin, and the rest of the Mac team was recognizing a huge untapped market for home computing among artists, musicians, writers, and other creative weirdos who might never have cared enough to master the arcane complexities of a command-line UI or blow a fortune on hulking digital workstations.

The challenge of designing a personal computer that “the rest of us” would not only buy, but fall crazy in love with, however, required input from the kind of people who might some day be convinced to try using a Mac. Fittingly, one of the team’s most auspicious early hires was a young artist herself: Susan Kare.

Kare on the Mac development team

Susan Kare joins the Mac team

After taking painting lessons as a young girl and graduating from New York University with a Ph.D. in fine arts, Kare moved to the Bay Area, where she took a curatorial job at the Fine Arts Museums of San Francisco. But she quickly felt like she was on the wrong side of the creative equation. “I’d go talk to artists in their studios for exhibitions,” she recalls, “but I really wanted to be working in my studio.”

Eventually Kare earned a commission from an Arkansas museum to sculpt a razorback hog out of steel. That was the project she was tackling in her garage in Palo Alto when she got a call from a high-school friend named Andy Hertzfeld, who was the lead software architect for the Macintosh operating system, offering her a job.
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Category: Apple, Art, Books, Culture, History, Media, Multimedia, Personal computing, Technology, Women | Tagged , , , , , , , , | 195 Comments

White House Appointee Ari Ne’eman on the Power of Autistic Community

By Steve Silberman
Posted: November 1, 2011
Ari Ne'eman of ASAN. Photo by Aristide Economopoulos, used with permission.

Ari Ne'eman of ASAN. Photo by Aristide Economopoulos, used with permission.

Editor’s note: I’ve never been a fan of campaigns that propose to get people talking about important issues by telling them to shut up. (No “Day Without A Gay” in my name, thanks.) That’s why, when I saw a press release [PDF] a year ago from an organization promoting a social-media blackout for autism awareness called “Communication Shutdown,” it seemed like an awful idea. The goal of the event — touted by a roster of “celebs” including actor Steven Segal — was to give non-autistic people a taste of the frustration some people on the spectrum face in trying to communicate by convincing them to log off of all social networks for 24 hours (while downloading a $5 “charity app” that funneled money to the organization.) It seemed almost perverse to honor autistic people by shunning the very medium that has empowered many of them to find their own voices at last, after decades of being silenced behind the walls of institutions and well-meaning organizations that claim to speak for them.

Then I read an inspiring post from a young woman named Corina Becker calling for a counter-protest on November 1 that she called Autistics Speaking Day. She wrote: “What’s the tragedy? That people can’t speak? Or that too few are listening? Whether we’re verbal or nonverbal, does telling people to stay off social communication networks really create empathy for us? The Internet is how we find one another. It’s where many of us feel heard. It’s where many of us feel most comfortable.” I offered Becker this forum for a day, and I’m glad I did. Her essay “25 Things I Know as an Autistic Person” was honest and provocative. Yielding this space to someone on the spectrum each November 1 feels like a tradition worth maintaining.

This year, I’m honored to feature Ari Ne’eman, co-founder of the Autistic Self-Advocacy Network, and the first openly autistic White House appointee, nominated by President Obama in 2009 to sit on the National Council on Disability. Ne’eman — who is also one of the youngest presidential appointees in history at 23 — is one of the most passionate and articulate leaders of the neurodiversity movement, an emerging force for social justice that brings the empowering message of the disability-rights movement to those who think differently. From his seat on the Interagency Autism Coordinating Committee, which oversees policy initiatives within the Department of Health and Human Services, Ne’eman has been a powerful advocate for autistic people and their families, fighting for services and support, inclusive education, and public policy that will enable people on the spectrum to live and work in their own communities, while battling unethical research agendas and entrenched stereotypes of what autistic people can and can’t do.

I did the first major interview with Ne’eman on Wired.com after he took his seat on the NCD, and have followed his career as I write my book on autism and the neurodiversity movement. Ne’eman and I don’t always agree on everything, but I’ve often found myself mulling over things he says long after he says them. I’ve also watched him talk to autistic people and their families, to folks with other disabilities, and to student organizers and self-advocates across the country, and I’ve been consistently impressed with the depth of his knowledge, his compassion and empathy, and the earnestness of his commitment to civil rights for all. I’m grateful to him for speaking out today on the Public Library of Science.

– Steve Silberman

Ari Ne'eman of ASAN. Photo by Aristide Economopoulos, used with permission.

Ari Ne'eman of ASAN. Photo by Aristide Economopoulos, used with permission.

Community Matters

by Ari Ne’eman

Community matters. One of the things I always appreciated about my first few weeks in college was the existence of the local Hillel — the Jewish student center active on my campus, and many hundreds of other campuses across the country. I was an out-of-state student going to a university where most of my classmates had grown up within no more than an hour’s drive of the campus. Having an immediate sense of community as a Jew was incredibly meaningful for me — and yet, I always felt a profound sense of regret that I didn’t have the same opportunities as an Autistic as I did as a Jew. Walking into the university disability services office was a far cry from the warmth of Shabbat dinner or outreach by campus Jewish organizations. Instead of being connected to others who could relate to my experiences as someone on the autism spectrum, I and other disabled students were usually greeted by a bored work-study student handing us a card upon which we could check one of a few “standard” accommodations — extended time, alternative print/braille, note-taking and a few others, crafted without thought to the needs of students like me. Anything else required a long wait and an uphill battle.

There are a lot of issues worth unpacking here — the low quality of support offered to disabled students in post-secondary education, the vast gap between programs focused around compliance and those focused around quality of life — but the one that I want to focus on today is the value of community. Being part of any minority group is always a challenging experience. Living in a world built for people who are not like you is alienating, whether it’s because of the way your brain works or because you don’t celebrate Christmas. In the disability world, we use concepts like the social model of disability to explain this experience. Service-provision and reasonable accommodations and any number of other things we fight to receive are intended to bridge the gap between the world as it is and the world as we’d like it to be. Yet, we still have so very far to go to create a more just society. The last few months have seen some heated discussions about privilege in both the autism community (that is, the community of non-Autistic parents and professionals with an interest in autism) and the Autistic community. I think one of the things that makes privilege such a hard topic to discuss with those who are, or would wish to be, our allies is that it continues to exist, even when we get the things we’re advocating for. In the best of all possible worlds we can create, we will still be expected to explain ourselves to others in ways that no neurotypical person would have to do. We will still frequently face assumptions and stereotypes that require us to work twice as hard for the same results.

So, what can we do when our best efforts to change the world we live in are simply not enough? What salvation exists for us, when our lives are still more difficult, even when we do get the supports and accommodations we want? These are vexing questions. Some people try and find the answer in the search for a “cure.” They believe that the best way to solve the problems facing Autistic people is make us appear as non-autistic as possible, or to prevent future generations of Autistic people from existing.

The first option bothers me deeply. When a child or adult is called “recovered,” they don’t change into a different person. All the things — good and bad — that we call autism don’t go away because you lose a word. Instead, that person no longer has language for what they experience. That person goes through the same struggles, the same difficulties, but lacks the context and the community to know how that it is okay for them to be who they are. Sometimes that prevents them from accessing needed help. Other times it just traps them in a place where they have to constantly look over their shoulder, worrying about who might notice them being just a little bit “off.” Either way, it isn’t an outcome we should wish upon anyone.
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Category: Asperger Syndrome, Autism, Culture, Education, Ethics, Health, History, Journalism, Media, Neurodiversity, Social networks | 16 Comments