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.

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.

Jack Rothman

After years of trying to conceive, my husband and I got lucky and I gave birth to a baby boy.  What we didn’t know was that our baby had been struggling in utero.  By the time he was born, he had lost a lot of blood and was very sick.  He couldn’t breathe on his own.  For weeks, he was in a coma while the doctors applied medicines and machines.  Our precious baby boy was in such bad shape that we weren’t allowed to hold him, touch him, cuddle him skin-to-skin, or any of the other lovely things that usually happen when a baby is born.

One day, after Jack had been in the NICU for four weeks, we went into the unit. All of the doctors were sitting near the windows, a few feet away from our beautiful boy.  I thought, “This is strange. Usually it’s just us and the nurses.”  The doctors told us to sit down while the head neonatologist spoke. “What we’ve seen in cases with these kinds of breathing issues is that babies either get better in four weeks, or they don’t get better,” she said. “It’s been four weeks.  So it doesn’t look good.  He’s not going to make it.”

With tears streaming down our faces, we stumbled over to Jack’s bassinet.  The nurse handed us a card with his little footprint on it.  An inscription in the card read, “Happy Father’s Day — love, Jack.”

Jack Rothman with his father, Steve.

But that night, a miracle occurred.  It’s not just me, a mother, calling it a miracle.  The doctors called it a miracle too.  Babies like Jack usually don’t make it.  But my child did.  His breathing improved dramatically.   He was going to survive.  We were profoundly shaken, thankful, and happy.

By the time we left the hospital two weeks later, however, the doctors had delivered more difficult news:  Jack would have moderate to severe disabilities.  I called my mom, crying on the phone.  I wasn’t crying for what I expected of my child, or for a dream not being realized, or any of those things.  “I just don’t want Jack to feel different,” I sobbed.

When our son was eight months old, we started him on physical and occupational therapy. We were taught how to manipulate Jack’s body so he would learn motor skills.  To teach him how to crawl, for example, I’d move Jack’s left hand, and then his opposing knee, then his right hand, then his opposing knee again.  I was completely comfortable because, here I was again, learning the rules about fixing another person’s problem.  This was how it’s done, right?  You learn the rules.  You work on your child’s problems.  Or so I thought.

As Jack passed his second birthday, I began keeping track of the ways that his development differed from what I expected.  He loved playing with doors, opening and closing them, but didn’t like playing with toys.  His use of language lagged behind that of his peers.  He reacted in ways I didn’t expect to noises, crowds, crying babies, and children.  He seemed happy, but he was also extremely anxious.   When I questioned the service providers who worked with Jack, they stated categorically that it wasn’t autism, because he was too social (a myth).  Another professional said it wasn’t autism because Jack responded to his name (another myth).   A third thought we would have to wait to find out anything (also not true).

When Jack was three, he spent a brief, tearful stint in preschool.  His anxiety increased exponentially in that noisy, motion-filled environment.  The teachers told us they had never seen a child so anxious. We talked about the developmental differences we’d noticed with the neurologist who had worked with Jack since he was born. When he delivered a diagnosis of autism, we weren’t very shocked. We had already guessed.  As the diagnosis sunk in, I thought – how can I fix this? What are the rules?  I knew how to manipulate Jack’s body to teach him how to move. How could I reach into my baby’s head and fix his brain?

The neurologist referred us to a developmental psychologist who put me through six weeks of training in a form of therapy called DIR/Floortime. The aim of this therapy was not to enable me to “fix” my child, but to learn more about him: How Jack processes sensory input and responds to the world, how he uses language, what makes him laugh, what frightens him. This philosophy laid the foundation for how I think about autism.

At first, I’d go to the training session and tell the psychologist what I thought Jack’s problems were. “What about him playing with doors? That’s a problem, right?  Kids don’t play with doors.” She would turn to me, tilt her head, and say, “You know this is about you, right?”  That kept happening.  I’d bring up what I thought was a problem, and she’d tilt her head and say, “You know this is about you?”

I thought autism was Jack’s problem and I was going to learn the rules of fixing him.  Instead, what I learned was that the problem was with me. I would need to question every assumption that society had taught me about my son.  Me — the lawyer, the critical thinker — I needed to challenge everything I had ever learned about autism.

We need to challenge how autism is defined — as a set of behaviors and deficits – because this description leads us inexorably to “fixing” autistic people.  Autism is a way that the brain takes in, processes, and responds to information.  This way of processing results in variations in the way the world is experienced and the ways that learning, communication, and movement occur.  Autistic people develop skills on a different timetable or in a different order than expected.

But autism also comes with a set of strengths – a deep passion for interests, the ability to recognize visual, musical, social, or emotional patterns, and a strong individuality.  When we ignore autistic strengths, we ourselves become stuck on fixing autistic people, rather than building on their natural talents.

Brenda and Jack Rothman jumping waves together

We need to challenge how autism is portrayed in the media.  Using fear, sadness, and pity to generate donations devalues autistic lives and terrorizes parents.  Imagine never seeing a positive image of yourself or your child in the media.  Imagine always being seen as an object of pity.  The negative portrayal of autistic people and their families sends the message that their lives are joyless, worthless, and powerless.  Instead of this unrelenting image of fear, we need to hear more stories of real autistic people’s lives – their joys, successes, and what helps them thrive.

We need to question the perception that disabled lives are pitiable.  Our history and culture defines “normal” and anyone different is seen as less than.  We are programmed to see those who are not white, male, and heterosexual, with certain physical and neurological characteristics, as not normal. This view explains why white skin is seen as the default and black skin is seen as different.  It explains why women in business are told to think like men, and why any display of emotion is labeled a sign of weakness.  It sends a message that anything different from “normal” is not good enough.

This is why I cried when I first learned that my son would have disabilities and be perceived as “different.” In that moment, my child’s potential was erased by my unconscious biases. Unknowingly, I had bought into the idea that anything other than a certain set of physical and neurological characteristics is a life of less than, a pitiful existence.  What did that say about how I thought of as myself as a woman?  What did that say about my relationships with black people?  Gay people? About people with other disabilities?  What did that say about my relationship to my own child?  We need to challenge the belief that difference is less than. Our ideas about what is “normal” need to change.

We need to examine our response to autism.  When we start with the incorrect premise that autistic people don’t understand or misbehave, we end up with behavioral programs directed at training them to act in “normal” ways.  By recognizing that they already communicate and understand, we can identify the obstacles that make it difficult for them.  We can move from trying to fix the person to giving them the supports they need.  These supports include sensory-friendly environments, devices to assist communication, acceptance of moving around and stimming, and methods of learning that come most naturally to them. Creating supports like this are like building ramps for autistic people, instead of forcing them to climb stairs that exhaust and exclude them.

The Grand Lesson

After my child was diagnosed with autism, the grand lesson finally got through to me.  Life isn’t about finding sets of rules. It’s about seeing my own child, other people’s children, and other adults behaving in ways that I didn’t expect, and then challenging my own prejudices and reactions. It’s about learning to broaden our narrow perceptions of normal, thinking carefully about what we mean when we say “different,” and how we define happiness.

Jack Rothman at the Lincoln Memorial, 2012

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: “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.

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

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

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.

Photo by Tai Shimizu (http://www.taishimizu.com), used with permission.

Carl Zimmer

Carl writes frequently for the New York Times and blogs at The Loom and Download the Universe.

Music doesn’t mean much to me when I’m doing the dreary chores involved in assembling a story–reading papers, playing email tag, going through transcripts while sitting in a grubby airport. But there comes a time when everything’s in place–the outline is in good shape, the information is all ready to be deployed, the introduction is taking shape in my mind–and then I open up a new document and hit some music. If I am trying to explain something complicated and want to get across the beauty of science’s complexity, I may put on some Bach or Thomas Tallis. But when writing is working out, it brings me as much pleasure as reading can, and I want music that speaks to some other part of me–I think that fifteen-year old who got a mix-tape from a friend and discovered the greatness of a band for the first time, or who had his heart broken for the first time, or who actually got something right for once.

iTunes, it turns out, lets you create a PDF of a playlist. This is NOT an authoritative, complete list of my work music. It only reflects a month or so when I’d listen to music and say, this is something I want to work to. [Click list to embiggen].

Carl Zimmer’s writing playlist (click to embiggen!)

David Wolman

David is a contributing editor at Wired and the author, most recently, of The End of Money.

A writer friend of mine–a real talent–once told me he only listens to classical music when he’s writing. Songs with lyrics tend to interfere with his inner voice. I remember thinking: Damn, that’s a real literary guy kind of answer. I want that answer.

But as my neighbors can attest, that is not my answer. I need to get pumped up to write, which means I listen to some decidedly un-relaxing tunes, often the same ones over and over again. And who knows? Maybe loud music helps my writing because the prose has to compete. Without tempo and sharp diction, the words will be overwhelmed. It’s as if the music provides both a challenge and a warning: DO NOT BE BORING. With that, I give you the most recent iteration of my playlist entitled “Write The Book!”

“Paper Planes” by M.I.A.
“The Funeral” by Band of Horses
“Sleepyhead” by Passion Pit
“Time to Pretend” by MGMT
“Helena Beat” by Foster the People
“In This World” by Moby
“Bad (live)” by U2
“Amsterdam” by Peter Bjorn and John
“Free Your Soul” by Supercar
“Next Exit” by Interpol
“A Little Soul” by Pulp
“Rez” by Underworld
“Fix You” by Coldplay
“Janglin” by Edward Sharpe & The Magnetic Zeros
“Number 1″ by Goldfrapp
“Atmosphere” by Joy Division
“The Bends” by Radiohead (or anything from that album)
“Torn & Frayed” by The Rolling Stones
“I Will Follow” by U2
“Temptation” by New Order
“All These Things” That I’ve Done by The Killers
“Universal” by Blur
“Bittersweet Symphony” by The Verve
“Girls” by Death in Vegas

Ed Yong

Ed is a vagrant scribe, Web miscreant, and science writer for Discover at Not Exactly Rocket Science.

Lux Aeterna — the movie remix.

I need something with no lyrics, that’s dramatic but not too fast. Like the auditory equivalent of fourth gear.

David Shenk

David’s most recent book is The Genius in All of Us.

For reasons that no one wants to hear about, I spend an awful lot of time obsessing on this question: The perfect music for just the right mindset to create just the right paragraph. For every twenty minutes of music that I actually listen to, there may be four or five hours collecting it, pruning it, backing it up, setting up a streaming server, choosing the right headphones…

Most of the 8000 hours on my hard disk is useless (or actively harmful) to writing. I can’t listen to Bruce or Elvis or the other Elvis and come up with any worthwhile sentences. I can’t listen to Aimee Mann or Wilco or Martha Argerich or Richard Thompson or The Frames. I can’t listen to the very best-crafted songs or the most resonant voices or the sweetest melodies or the most blistering guitar solos. Way too distracting.

But I can listen to some of my very favorite stuff, including:

- Keith Jarrett, solo or trio, preferably the longer pieces that wander off in search of something genuinely new.

- Yo La Tengo, the louder, completely unapologetic pieces

- Philip Glass, the hypnotic pieces (i.e., all of them)

- Grateful Dead, usually everything in a ’73-’82 second set, up through Space and the ensuing Jerry ballad. (When “Sugar Magnolia” comes on, I’m done for the day. No good sentence has ever been written to “saw my baby down by the river, knew she’d have to come up soon for air.”)

What does Yo La Tengo’s “Pass the Hatchet I Think I’m Goodkind” have in common with a 43-minute “Dark Star” from Cleveland 1973? There’s something entraining, even hypnotic, in all this stuff. I think it usually has either an overwhelming percussive quality or an improvisational humility and powerful openness, or both.

If I’m being honest (which I feel compelled to be in Steve’s presence), there’s also an exception to all this: a guilty pleasure that is slick, melodic, and embarrassingly thin. For some reason that I still cannot fathom, but I’m sure speaks ill of me, I am often able to do quite well with Pink Floyd’s 1994 album The Division Bell. I know — it’s not really Pink Floyd. Roger Waters is long gone. I don’t argue that it begins to touch Animals or Meddle as a creative work, but somehow I can write to it. Inscrutability is a good thing.

Priscilla Gilman

Priscilla’s memoir, The Anti-Romantic Child: A Story Of Unexpected Joy, was chosen as a Best Book of 2011 by the Chicago Tribune and The Leonard Lopate Show.

While writing The Anti-Romantic Child, I created an extensive playlist that I wrote about here for Poets & Writers magazine.

Recently I’ve been finding great writing inspiration in the British composer William Alwyn’s “Lyra Angelica,” a concerto for harp and string orchestra. It has many moods and tones, and both wrenches and uplifts me, soothes and galvanizes me in ways that I’m grateful for.

A few more songs/pieces that invariably help me to get my writing groove on:

“Franklin’s Tower,” the Grateful Dead — to free my mind.

“Sodom, South Georgia,” Iron & Wine — to help me delve deep.

“Blue Ridge Mountains, ” Fleet Foxes — to help me distill inchoate and confusing emotions into precise words.

“Very Slowly” from Appalachian Spring by Aaron Copland — we had my new husband’s parents come in and Benj walk my Mom down the aisle to this at our recent wedding and it somehow epitomizes family to me.

“Here Comes the Sun,” The Beatles — when I need to cry!

August Kleinzahler

August was born in a cross-eyed hurricane and is the author of Music: I-LXXIV, published by Pressed Wafer. He was the winner of the 2008 Lannan Literary Award for Poetry.

I don’t play music in conjunction with my writing, for which I require silence to hear the music in my own head and in the word-sounds and cadences, etc.

I don’t use music “to get in the mood” for writing. That said, music, most assuredly percolates into the writing, but in ways that are somewhat mysterious to me, or, at least, unconscious.

Months go by where I can’t listen to jazz, only to, say, early Baroque chamber ensembles or Bach keyboard. I listen to Bach’s “Well-Tempered Clavier” a great deal, and I especially enjoy the recordings where the artist employs several keyboard instruments, i.e. piano, harpsichord, fortepiano and organ. (I am an unrepentant timbre queen). Robert Hill on the Hanssler label, who employs all four instruments, and Pascal Vigneron & Co., I forget which label, and only available on MP3, which omits with fortepiano.

Then, one day, as recently happened to me one morning at the Weehawken Sheraton, I turn on the radio and hear Bud Powell playing a trio version of “Reets and I,” a late career date, perhaps in Stockholm, early 60s, and it was as though those ivories he was banging were situated in a vertical row up and down my sternum. This is a kind of joy within me approaching ecstasy. I am a great believer that what one pours, as if through a funnel, into one’s head — eyes, ears, etc. — works either as a nutrient or a toxin, at least with regard to one’s “soul” or “spirit” or “art.” I am as fastidious and strict as an ultra-Orthodox Jew or a Salafist Muslim about just what goes down that funnel, and how, under what circumstances, and when.

David Dobbs

David is working on his fourth book, The Orchid and the Dandelion, which is about how genes and culture shape temperament, behavior, and evolution.

I listen to music only about a third of the time that I’m actually writing, usually just to get in the right mood — and so I’m not distracted, in that first hour, by the silent sound of me trying to write. So I might listen for 20 to 80 minutes, then quit once I’m enough into the story that the music becomes distraction rather than muse. If I’m really going well, the music dies and I don’t realize it.

What to listen to? Usually it’s from the list below. The choice at the time depends on my mood, how well I’m working, and/or whether I seem to need calming or stimulation.

My playlists:

Bach’s English Suites, the recordings by Wolfsam Rubsam on Naxos. These suites are wonderfully orderly, like all Bach, and driven with an especially clean melodic energy. Just what you need to keep a roll going; not so good if you have to climb a fresh hill. I like listening to them when revising, or when, as Hemingway advises, I have left my writing the day before in a state of clear motion so that it is easy to pick up.

Bach’s Lute Suites, recorded by Sharon Isbin on guitar. Other than a few Neil Young albums, Sticky Fingers, and “Kashmir,” I don’t think I have a recording I’ve listened to more often. It opens with a lovely cascade of notes that can chute you down a wonderful Zenlike channel. I confess that once I’m going, I often turn this off after a half hour or so, when it starts to seem jangly and intrude. That’s a good sign; it means I’ve got enough going on the page that I don’t need more stim.

At that point — or when I need to just color the aural landscape, rather than drive myself through it — I’ll go to some gentler stuff. Most commonly I’ll play one of two iTunes “genius” playlists, 100 songs each, that iTunes’ Genius algorithm pulled together from tunes I named. The first builds from “The Man I Love,” a gorgeous jazz standard, a ballad, recorded in this case by the trumpeter Enrico Rava with drummer Paul Motian and pianist Stefano Bollani. The other playlist is built around a recording of Hank Williams’ “I’m So Lonesome I Could Cry” by Bill Frisell, Ron Carter, and, again, drummer Paul Motian, who’s a genius. Motian plays his kit so gently he could put babies to sleep.

I also listen to a lot of slow Charlie Haden, especially his album Heartplay, with the guitarist Antonio Forcione, and Jasmine, with Keith Jarrett.

Another rung down the distraction/stimulation ladder and I’m into background/ambient terrain. Here also I rely on two staples:

First, a shuffled play of Brian Eno’s ambient albums, such as Music for Airports; second, an ingenious iPod app Eno made called Trope. You tap and rub the screen for a moment, fingerpaint-style, to set the texture for a Music for Airports-like ambient soundscape that will play indefinitely. I’ve done some great planning and some of my better writing lately with that going. The one danger is that the fine ambience and healthy relaxed Zenlike state it produces can convince you you’re getting good work done when it turns out … well, you’re not. A couple times I fell asleep.

When that happens, I get up, turn the volume up to 11, and put on some Led Zeppelin: “In The Evening,” for its hunger; “Fool in the Rain,” for the triumph of Jimmy Page’s solo; “The Ocean,” because it’s in 15/16, reminding me of the power of structure; “Kashmir,” for like reasons; or, if I’ve actually done especially good work done and feel like the king of the world and figure maybe it’s time to go downstairs and visit my wife, “I’m Gonna Crawl.” Because it works.

Brian Eno: “Set up a situation that presents you with something slightly beyond your reach.”

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.

“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”

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?

Billings: The question of habitability is a second-order consideration when it comes to Gliese 581g, and that fact in itself reveals where so much of this uncertainty comes from. As of right now, the most interesting thing about the “discovery” of Gliese 581g is that not everyone is convinced the planet actually exists. That’s basically because this particular detection is very much indirect — the planet’s existence is being inferred from periodic meter-per-second shifts in the position of its host star. The period of that shift corresponds to the planet’s orbit as it whips from one side of the star to the other; the meter-per-second magnitude of the shift places a lower limit on the planet’s mass, but can’t pin down the mass exactly. So that’s all this detection gives you — an orbit and a minimum mass. That’s not a lot to go on in determining what a planet’s environment might actually be like, is it?

Now, get up and walk around the room. You’re moving at about a meter per second. Imagine discerning that same rate of change in the motion of a million-kilometer-wide ball of plasma, a star many light-years away. Keep in mind this star’s surface is always moving, in pounding waves and swirling eddies, in rising and falling convection cells, in vast plasmatic prominences arcing above the surface, often at many kilometers per second. At any particular moment, all that stellar noise can swamp the faint planetary signal. Only by building up hundreds or thousands of careful measurements over time can you get that crucial periodicity that tells you what you’re seeing might be a planet. So the measurement is quite statistical in nature, and its interpretation can change based on the statistical assumptions being used. This is further complicated by the fact that planets are rarely singletons, so that any given stellar motion may be the product of many planets rather than one, requiring careful long-term study to tease apart each world’s contribution to the bulk signal. It’s also complicated by the instability of astronomical instruments, which must be kept carefully, constantly calibrated and stabilized lest they introduce spurious noise into the measurements. In the case of Gliese 581g, not everyone agrees on the putative planetary signal actually being caused by a planet, or even being real at all — the signal doesn’t seem to manifest equally in the handful of instruments purportedly capable of detecting it.

So it’s very difficult to just detect these things, and actually determining whether they are much like Earth is a task orders of magnitude more difficult still. Notice how I’m being anthropocentric here: “much like Earth.” Astrobiology has been derisively called a science without a subject. But, of course, it does have at least one subject: our own living planet and its containing solar system. We are forced to start from what we know, planting our feet in the familiar before we push out into the alien. That’s why we, as a species, are looking for other Earth-like planets — they probably offer us the best hope of recognizing anything we might consider alive. It’s not the strongest position to be in, but it’s the best we’ve got. Calculating the probability of life on an utterly alien world outside the solar system for which we know only the most basic information — its mass, its orbit, maybe its radius — is at this stage a very crude guess. The fact is, we still don’t know that much about how abiogenesis occurred on Earth, how life emerged from inanimate matter. There are very good physical, chemical, thermodynamic reasons to believe that life arose here because our planet was warm, wet, and rocky, but we really don’t yet know all the cogent occurrences that added up to build the Earth’s earliest organisms, let alone our modern living world. A warm, wet, rocky planet may be a necessary but not a sufficient condition for life as we know it to form and flourish.

Lee Billings with planet hunter Geoff Marcy

This is really a chicken-and-egg problem: To know the limits of life in planetary systems, we need to find life beyond the Earth. To find life beyond Earth, it would be very helpful to know the limits of life in planetary systems. Several independent groups are trying to circumvent this problem by studying abiogenesis in the lab — trying to in effect create life, alien or otherwise, in a test tube. If they manage to replicate Earth life, the achievement could constrain just how life emerged on our own planet. If they somehow manage to make some single-celled organism that doesn’t use DNA, or that relies on silicon instead of carbon to build its body, or that prefers to swim in liquid ethane rather than liquid water, that gives us a hint that “Earth-style” biologies may only be one branch in a much larger and more diverse cosmic Tree of Life.

Silberman: Going deeper than the notion of the cosmos feeling “less lonely” – as well as the fact that we all grew up watching Star Trek and Star Wars and thinking that aliens are frickin’ cool (as long as they’re not the mama alien from Alien) — why do you think people are so motivated to daydream about extraterrestrial life? What need in us do those dreams fulfill?

Billings: I don’t really think most people are necessarily motivated to daydream about just any sort of extraterrestrial life. It will probably take more than a microbe or a clam to excite most of our imaginations, even if that microbe happens to be on Venus or that clam happens to be on Mars.

I do think humans are motivated to daydream about extraterrestrial intelligence, and, to put a finer point on it, extraterrestrial “people.” They are motivated to dream about beings very much like them, things tantalizingly exotic but not so alien as to be totally incomprehensible and discomforting. Maybe those imagined beings have more appendages or sense organs, different body plans and surface coverings, but they typically possess qualities we recognize within ourselves: They are sentient, they have language, they use tools, they are curious explorers, they are biological, they are mortal — just like humans. Perhaps that’s a collective failure of imagination, because it’s certainly not very easy to envision intelligent aliens that are entirely divergent from our own anthropocentric preconceptions. Or perhaps it’s more diagnostic of the human need for context, affirmation, and familiarity. Why are people fascinated by their distorted reflections in funhouse mirrors? Maybe it’s because when they recognize their warped image, at a subconscious level that recognition reinforces their actual true appearance and identity.

More broadly, speculating about extraterrestrial intelligence is an extension of three timeless existential questions: What are we, where do we come from, and where are we going? The late physicist Philip Morrison considered SETI, the search for extraterrestrial intelligence, to be the “archaeology of the future,” because any galactic civilizations we could presently detect from our tiny planet would almost certainly be well more advanced than our own. It’s unlikely that we would ever receive a radio message from an alien civilization in the equivalent of our past Stone Age, and it’s unlikely Earth would ever be visited by a crewed starship that powered its voyage using engines fueled by coal or gasoline. Optimists consider this, and say that making contact with a superior alien civilization could augur a bright future for humanity, as it would suggest there are in fact solutions to be found for all the current seemingly intractable problems that threaten to destroy or diminish our species. It’s my opinion that most people think about aliens as a way of pondering our own spectrum of possible futures.

Young Cliff Robertson talking philosophy with an alien hacker, Outer Limits pilot episode “The Galaxy Being,” 1963.

Silberman: Continuing that thought, how likely is it that, if we ever make contact with life on other planets, they will be the type of creatures that we could sit down and have a Mos Eisley IPA or Alderaan ale with — even if, by then, we’ve worked out the massive processing and corpus dataset problems inherent in building a Universal Translator that works much better than Google? And if we ever did make contact, what social problems would that meeting force us to face as a species?

Billings: Outside of the simple notion that complex intelligent life may be so rare as to never allow us a good chance of finding another example of it beyond our own planet, there are three major pessimistic contact scenarios that come to mind, though there are undoubtedly many more that could be postulated and explored. The first pessimistic take is that the differences between independently emerging and evolving biospheres would be so great as to prevent much meaningful communication occurring between them if any intelligent beings they generated somehow came into contact. Indeed, the differences could be so great that neither side would recognize or distinguish the other as being intelligent at all, or even alive in the first place. An optimist might posit that even in situations of extreme cognitive divergence, communication could take place through the universal language of mathematics.

The second pessimistic take is that intelligent aliens, far from being incomprehensible and ineffable, would be in fact very much like us, due to trends of convergent evolution, the tendency of biology to shape species to fit into established environmental niches. Think of the similar streamlined shapes of tuna, sharks, and dolphins, despite their different evolutionary histories. Now consider that in terms of biology and ecology humans are apex predators, red in tooth and claw. We have become very good at exploiting those parts of Earth’s biosphere that can be bent to serve our needs, and equally adept at utterly annihilating those parts that, for whatever reason, we believe run counter to our interests. It stands to reason that any alien species that managed to embark on interstellar voyages to explore and colonize other planetary systems could, like us, be a product of competitive evolution that had effectively conquered its native biosphere. Their intentions would not necessarily be benevolent if they ever chose to visit our solar system.

The third pessimistic scenario is an extension of the second, and postulates that if we did encounter a vastly superior alien civilization, even if they were benevolent they could still do us harm through the simple stifling of human tendencies toward curiosity, ingenuity, and exploration. If suddenly an Encyclopedia Galactica was beamed down from the heavens, containing the accumulated knowledge and history of one or more billion-year-old cosmic civilizations, would people still strive to make new scientific discoveries and develop new technologies? Imagine if solutions were suddenly presented to us for all the greatest problems of philosophy, mathematics, physics, astronomy, chemistry, and biology. Imagine if ready-made technologies were suddenly made available that could cure most illnesses, provide practically limitless clean energy, manufacture nearly any consumer good at the press of a button, or rapidly, precisely alter the human body and mind in any way the user saw fit. Imagine not only our world or our solar system but our entire galaxy made suddenly devoid of unknown frontiers. Whatever would become of us in that strange new existence is something I cannot fathom.

The late Czech astronomer Zdeněk Kopal summarized the pessimist outlook succinctly decades ago, in conversation with his British colleague David Whitehouse. As they were talking about contact with alien civilizations, Kopal grabbed Whitehouse by the arm and coldly said, “Should we ever hear the space-phone ringing, for God’s sake let us not answer. We must avoid attracting attention to ourselves.”

Lee Billings at Cerro Tololo Inter-American Observatory, in the high desert of northern Chile

Silberman: You’re currently working on a book with the marvelous title Five Billion Years of Solitude. What’s it about, and what excites you most in writing it? Has the research or writing process inspired you to change your mind about anything?

Billings: When people ask about the book at cocktail parties and the like, I simply say that it’s about the search for other Earth-like planets, which is true, but not the whole truth. The whole truth is that the book is about the unique moment of time in which we now find ourselves, this unprecedented period in the history of our civilization and our entire planet during which we can rationally hope to discover that we are not alone in the universe. It’s a book less about other Earth-like planets, and more about the Earth itself, viewed in a cosmic context that informs whether or not our world and our time might in any way be privileged or special. Most importantly, it’s a book about people, and the mysterious forces that drive us, individually and collectively, to search for meaning in our everyday lives by gazing up into the heavens.

What excites me the most about writing this book is the time I get to spend with some of the scientists who are so heavily invested in this search, and the privilege I have in talking with them and telling some of their stories. If life as we know it is in fact relatively common in the universe — and I suspect it is – some of them may be remembered as the first who found other inhabited planets, other living worlds, elsewhere in the cosmos.

The book’s title, Five Billion Years of Solitude, is actually a subtle nod to some things I’ve changed my mind about in the course of my research. It’s a reference to the longevity of Earth’s biosphere. Earth’s life emerged shortly after the planet itself formed some 4.5 billion years ago, and current estimates suggest our world has a good half-billion years left until its vibrant biosphere of diverse, complex multicellular life begins sliding back to microbial simplicity. When I first began planning this book, I believed that we would eventually find clear signs of life beyond our solar system, and suspected that contact with other cosmic civilizations was just a matter of time, for they were probably common throughout our galaxy. I believed that humans had a future, a destiny, beyond the Earth, and that our discoveries of other habitable or inhabited worlds would galvanize society to strive to voyage to the stars. I no longer hold these beliefs as foregone conclusions. My optimism for humanity’s long-term prospects has dimmed.

I now believe that while life may be widespread in the universe, creatures like us are probably uncommon, and technological societies are vanishingly rare, making the likelihood of contact remote at best. I am less confident than I once was that we will find unequivocal signs of life in other planetary systems within my lifetime. I believe that, when seen in the fullness of planetary time, our modern era will prove to have been the fulcrum about which the future of life turned for, at minimum, our entire solar system. I believe that we humans are probably the most fortunate species to have ever arisen on Earth, and that those of us now alive are profoundly privileged to live in what can objectively be considered a very special time. Finally, I would guess that though we possess the unique capacity to extend life and intelligence beyond Earth into unknown new horizons, there is a better-than-even chance that we will fail to do so. The human story may end as it began — in nasty, brutish, and short isolation on a lonely, solitary planet. The book in part is my attempt to explain and come to terms with these beliefs, beliefs that I would very much like to be proved wrong.

Silberman: As much as I enjoyed reading your piece in The Best Science Online 2012, the bad news it conveyed was inescapable: The chances of us even being able to launch a little football crammed with sensors and CPUs anywhere near a potentially habitable planet anytime soon are very slim. What would be the one innovation that could potentially be a game-changer that would make interstellar travel practical?

Federation Starship Enterprise, warp field diagram (courtesy of Wikimedia Commons)

Billings: We really must dramatically reduce the cost of hauling payloads into orbit, which would allow Earth’s economic sphere to extend into the rest of the solar system.

Right now reaching low-Earth orbit generally comes at a cost somewhere between $5,000 to $10,000 per kilogram, depending on which launch vehicle is used. This creates an enormous barrier to making profitable ventures in space or building major space-based infrastructure. It also engenders further high costs in the design, fabrication, and testing of most spaceflight hardware, which due to the high cost to orbit must be made as lightweight and reliable as possible. Launch costs of $1,000 per kilogram appear within reach using current chemical rocket technology, and proposals exist for various non-rocket launch systems such as magnetic launchers or beam-based propulsion that could potentially reduce launch costs to hundreds of dollars per kilogram. The shift from government to commercial launch providers could be a very powerful force to drive costs down and spur innovation, and should perhaps be further encouraged through government subsidies until a more robust market develops.

If launch costs fall well below $1,000 per kilogram, a host of economic activities that were previously prohibitively expensive should at a stroke become cheap enough to be readily profitable. Space tourism would no longer be solely the provenance of multi-millionaires. Asteroid mining and space-based solar power production would no longer be the stuff of science fiction. Space stations, interplanetary missions, and enormous space-based communications networks and astronomical observatories would become significantly cheaper and more numerous. Humanity would become a more mature space-faring civilization, and as our space-based infrastructure bloomed, the resources and technical expertise required to mount more practical forays into interstellar space would grow.

Silberman: What practical investments on Earth could we be making now to increase the chances of our great-great-great-great-grandchildren being able to exchange Instagrams from Mars?

Billings: Pardon the rant, but I feel very passionate about this. More than anything else, the citizens of democratic nations that are wealthy enough to maintain space programs must hold their political leaders accountable and make space a major, legitimate voting issue to be taken very seriously. That’s the investment that needs to be made.

I’m an American citizen, so I will focus my comments on the American space program and the American political system. I’m sad to say that in this country, the most powerful nation presently on the planet, space science, exploration, and development are treated as fringe issues at best. Too many politicians, if they consider these issues at all, treat them in one of two ways: Dismissively, as things to be joked about, or cynically, as little more than pork-barrel job programs for their districts, things to be defended purely for the status quo and only given token lip-service when absolutely necessary.

And who can blame them? Look at what happens to politicians when they try to talk seriously and ambitiously about space today. They are lampooned and ridiculed by the media and by their political opponents as starry-eyed idealists who are disconnected from everyday realities. American politicians and voters alike view space programs as luxuries when in fact they should be seen as necessities. The truth is, the USA doesn’t really spend that much on space — less than half a penny of each federal dollar goes to NASA each year. NASA has a budget of about $17 billion. That is indeed a lot of money, but Americans collectively spend more each year on almost any mundane thing you can imagine: Pet food, pizza, sports equipment, video games, cosmetics, pornography, you name it. Some people say money spent on space is wasted, as if NASA stuffs sheaves of US dollars into rockets and then launches them into the Sun. Of course, all that money is spent right here on Earth, where it can provide good jobs and abundant spin-off technologies that indirectly benefit society. It really should be an easy sell, and the fact that so few Americans are buying in makes me worry very much for our future.

Americans seem to have forgotten that NASA is their space program, that it works for them. They’re steering the ship but don’t seem to realize their hands are on the wheel. The agency takes its orders and directions from the Congress and from the President that voters elect, but its course has become increasingly erratic and wastefully rudderless. Too few Americans possess the same sense of ownership over NASA’s future as they do for NASA’s past. So, if you are of voting age and you think space science and exploration is cool and important, let your voice be heard! Vote. Call your Congressperson. Organize groups of like-minded voters. Push back against the blithe cynics who say this stuff doesn’t matter. As far as I can tell, this sort of grassroots enthusiasm and engagement is the only way you or your descendants will ever again have a space program that is truly worthy of a great nation. It’s really up to you.

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!

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.

Photo by Flickr user MadcowIV.

The relevance of the nocebo effect is not limited to clinical trials. A particularly nasty demonstration of its power can be provided by patients who are being treated for Parkinson’s disease with small doses of electrical current delivered to certain structures in the brain. This technique, known as Deep Brain Stimulation (DBS), has been shown to be effective in controlling tremor and other motor issues in patients who are resistant to drugs. But if you tell a DBS patient that the current has been switched off — even though it remains on — their coordination and other motor functions will abruptly decline until you tell them that the juice has been switched on again. Classic nocebo.

The German researchers cite many other examples. In one study, 50 patients with chronic back pain were randomly divided into two groups before a leg flexion test. One group was informed that the test could lead to a slight increase in pain, while the other group was instructed that the test would have no effect. Guess which group reported more pain and was able to perform significantly fewer leg flexions?

Another example from the report: Patients undergoing chemotherapy for cancer treatment who expect these drugs to trigger intense nausea and vomiting suffer far more after receiving the drugs than patients who don’t. That’s not to say that this nausea is imaginary, purely psychological, or “all in their heads.” Like placebo effects, nocebo effects are physiological, not just mental. Researchers like Franklin Miller at the National Institutes of Health and Tor Wager at the University of Colorado are learning that nocebo effects are mediated by neurotransmitters like dopamine, endogenous opioids, and cholecystokinin. Telling a volunteer that the scented Vaseline you’re slathering on their arm is a pain-intensifying gel triggers a cascade of chemicals in the body that magnify sensations of discomfort.

Photo by Flickr user markkilner.

How evil can the evil twin of the placebo effect get? Even setting aside anecdotal accounts of evil eyes and “voodoo death” (first reported by a doctor named William Cannon in 1942), nocebo effects can kill, or at least accelerate the progress of disease. In traditional Chinese astrology, some potentially fatal maladies like cancer are associated with certain birth years. A 1993 study of Chinese-Americans who came down with these diseases found that they were more likely to die faster if they were born in an “ill-fated” year associated with the disease — but only if they believed in traditional Chinese astrology. (In these tragic cases, a dose of skepticism could have at least staved off the inevitable for a little while.)

In recent years, the phrase “informed consent” has become a mantra in public health, which is good news for many reasons. But what if the lengthy litanies of side effects we’ve become accustomed to skimming over — on printouts at the pharmacy, in ads for the latest antidepressants — are self-fulfilling prophecies? What if our well-intentioned desire to prepare patients for the worst increases the probability that the worst will happen?

Even the specific words employed by a doctor can influence the course of a patient’s treatment. Some particularly dreadful word choices cited by the German researchers include doctors telling patients:

You must strictly avoid lifting heavy objects — you don’t want to end up paralyzed.

You are a high-risk patient.

We’re putting you to sleep now. It will soon be all over.

Though the German report focuses on clinical practice and bedside manner, it’s hard not to think about the broader implications of nocebo effects in daily life.  If you’re ever been told twice in one afternoon that you “look a little worn out,” you know that it’s a miracle if you don’t feel utterly exhausted – if not physically ill — by the end of the day. Knowing about nocebo has made me much more careful when making observations about a friend’s physical condition.

The German report also points out that nocebo effects deserve much more study. One promising avenue for research might be examining the role of negative messaging in large-scale social phenomena like the apparent increase in food allergies in recent years, or the surge in popularity of gluten-free diets. Having friends with celiac disease and autism, I’m fully aware that some people are truly gluten intolerant, and that banishing the dreaded protein from the menu can avert serious medical problems. But the new report makes me wonder if the flood of anti-gluten “awareness” messages on social networks isn’t lengthening the lines for pricey GF pasta, crackers, and doughnuts at my neighborhood Whole Foods Market.

The conflict between the need for informed consent in medicine and our bodies’ propensity to take social factors into consideration when calculating our own health status is not an easy problem. In recent years, the pendulum has swung so far in the direction of more-bad-news-is-better that it seems almost like heresy to suggest that some of this paternalistic advice may actually be making us sicker.

The new generation of placebo and nocebo research is teaching us that how we feel is highly dependent on the feedback we get from the people around us, particularly from trusted health professionals. The next time I get a headache, you’ll forgive me if I don’t re-read the label on the aspirin bottle warning me about the possibility of hives, facial swelling, asthma, shock, Reye’s Syndrome, nausea, vomiting, severe stomach bleeding, allergic reactions, and distressingly vague “changes in behavior.”

I’ll just take two and hope for the best.

"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, 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 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 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 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.

Paula C. Durbin-Westby, founder of Autism Acceptance Day

Paula C. Durbin-Westby is an autistic self-advocate who blogs at paulacdurbinwestbyautisticblog.blogspot.com.

1. Think of autism as a disability and a difference, not a depersonalized “disorder.” When a person has a disability, that person is still a human being. That person with a disability has a body, a mind, interests, dreams, and goals, even if you can’t discern them. Only people have rights under the Developmental Disabilities Act and other protective legislation.  A disorder can be “combatted,” “cured,” “prevented,” and “eradicated” in any manner (including questionable goals, treatments, or interventions) that researchers and others see fit.  A person with a disability has the right to be who they are and to be accepted for who they are, without the need for a “fix” or “cure.”

2. Realize that not all behavior is intentional communication. What we call “behavior” is what can be observed. Many behaviors cannot be observed; they are internal, and are as important as any outward activity. Do not assume you know the reason for or function of a behavior, especially if you are making the assumption based on why you think a non-autistic person would be doing that same behavior. Behaviors are tied to ways of navigating the world. Where behaviors are simply “odd” or different, there is no need to expend energy on doing anything other than supporting the person and working to end discrimination based on harmless behavioral characteristics. Education should focus on the strengths of Autistic people, not on making us “indistinguishable from our peers.” By the way, our peers are other Autistic people.

3. Augmentative and alternative communication for all! Communication takes more than one person. A communication device is not communication. Research priorities and dollars should refocus on communication needs. A variety of communication systems may be needed, even for a single individual, depending on circumstances. AAC can benefit Autistics who do have speaking capability as well as those who do not use speech to communicate.

4. Eliminate the use of restraints and aversives.  Not every “challenging behavior” needs a take-down response. Consult Autistic adults, who have insights into strategies that can be used to replace the dangerous and trauma-inducing use of these aggressive techniques. Do not automatically restrain people who are self-injuring — use pillows or other soft objects to deflect self-injurious movements. Learn de-escalation techniques. Do not automatically restrain someone who is kicking a piece of furniture. Let them calm down. Help them calm down. Find something for them to kick that is cheaper or less concerning. Restraint is meeting aggression with aggression. What does it teach? Think about that.

5. Teach children to respect and accept differences, including disability. This suggestion has ramifications far beyond the disability world. A general acceptance of others who are different from us is a necessity in a world that is becoming more globalized. Disabilities are no exception. Pretending to have a disability for a day is not enough. Children without disabilities need to meet and engage with those who have disabilities, with someone acting as a facilitator of those encounters where necessary. Children (and all people) need to learn that people with disabilities are both very different from and very similar to them. Find common ground as well as nurturing and appreciating differences, even differences that are considered “difficult.”

Emily Willingham

Emily Willingham is a writer, scientist, partner, and parent. She manages the Double X Science site and blogs at The Biology Files.

“Life is easy to chronicle but bewildering to practice.” — E.M. Forster, novelist

1. Practice perspective taking. It’s ironic that autistic people are expected to have trouble with insight into others when so many people have trouble with insight into autistics. Everyone should try on the other person’s shoes and walk around in them for a while.

2. Practice not judging. It’s hard not to judge. We make countless judgments big and small, every day. But before you judge another person, remind yourself that behavior is communication. Rather than judging, ask yourself, “What is that person’s behavior saying that will help me understand better?”

3. Practice compassion. It’s a corollary to the first two, and it’s not easy. That’s why it takes practice.

4. Practice being yourself. The best possible way to understand how hard anyone’s personal battles can be is to understand how much you fight yours every day. What are your obstacles to just being You? Everyone has them. Behind every social facade is the deeper reality of who we are as individuals. If you find yourself in there and accept that person, you may find it more natural to accept the deeper reality of others, as well.

5. Practice courage. It takes courage to do any of these things. Being the one who takes perspective, works not to judge, practices compassion, and embraces personal individuality is a courageous act that can separate you from social norms and make you stand out, sometimes uncomfortably. Autistic people do it every day, purposely or otherwise. You can, too. Bring your courage, and acceptance easily follows.

Kassiane Sibley

Kassiane Sibley is an autistic activist and gymnastics coach. She blogs at Time to Listen.

1. Stop killing us, and stop glorifying our killers. Every time an autistic person is murdered, people fall over themselves to feel sorry for the killer. That’s pretty terrifying if, like me, you are actually autistic right this minute. Stop. You are not supposed to side with killers, empathy does not work that way.

2. 24-hour EVERYTHING. A lot of us hate crowds. A lot of us are stuck with mass transit. A lot of us are just not daytime people. If things were open 24 hours, not only would we create jobs, but those of us who are at our worst during normal business hours would have the energy to get way more done for ourselves.

3. Turn the volume and the lights down. Just in general. Nothing needs to be as loud or as bright as it is. Save some energy — and save everyone’s processing energy, not just mine.

4. Listen and look more for substance than style. Sometimes it’s hard enough to make what we mean clear, especially if we struggle with language. Please take what I say as what I meant, rather than deciding that I am mean or rude or inconsiderate or whatever for not wrapping it in bubble wrap first. What I said is far more important to comprehension than how I said it — I promise.

5. Tolerance and awareness are nowhere near enough. Teach acceptance, early and often. Little kids take their cues from the adults around them, mostly. Teach them, from a very young age, that some people are not like them and this is AWESOME. Tolerance says, “Well, I have to put up with you.” Awareness says, “I know you have a problem and are working earnestly to fix it.” Acceptance says, “You are amazing because you are you, and not despite your differences, but because of them.” That rocks. Make that the norm.

Jennifer Myers and her son Jack

Jennifer Byde Myers is co-founder of Thinking Person’s Guide to Autism and director of the Myers-Rosa Foundation.

1. Change the word “talk” to “communicate.” When my son was younger, therapists just wanted him to talk. They still call it speech therapy. Talking is overrated. We don’t care if he “talks” we want him to be able to communicate his needs effectively so he can lead the life he wants to live, not the one we think he wants to live.

2. Invest in education. Train the aides that work with people with autism. Fund the supports that are federally mandated in the schools yet remain unfunded by the feds. And invest in the education of every American so we can have a future with people who are knowledgeable and able to teach, provide professional services and lead our country in a way that encourages inclusion and equality.

3. Stop electing bigots. If a political entity is willing to say that gays, or single mothers, or people of color are less valuable to society, or are less worthy to receive respect and fair treatment under the law, how likely is it that a minority that is as diverse as the autism community will receive respect and needed services. Vote for the changes you want to see.

4. Put fences around parks, or at least part of the park. It’s not that I am too lazy to keep an eye on my son, but really, if I mess up for even a minute, he could end up as a hood ornament. I do not take him to parks that don’t have at least three sides blocked from traffic, and consequently he has missed out on a lot of parks. Recreation should be enjoyable for everyone on the outing, and safety is paramount.

5. Create an Autism Corps, like the Peace Corps. Train a generation of young men and women to work with autistics who need support with daily living skills like grocery shopping, or getting to work. Give parents and caretakers respite by providing free or very reduced rate childcare. A trained support network could provide an infrastructure for autistics to lead more independent and fulfilling lives.

Stephen Shore and Leo Rosa

Stephen Shore is an autistic self advocate, author of Beyond the Wall and Understanding Autism for Dummies, and professor at Adelphi University.

1. Move the conversation from tolerance and acceptance of individuals on the autism spectrum to understanding and appreciation. (“Tolerance and acceptance” give a sense of putting up with something, whereas “understanding and appreciation” suggests valuing the contributions that individuals with autism bring to humanity.)

2. Know that if everyone were the same, the world would be a very boring place.

3. Understand that often the most important thing to a person on the autism spectrum about employment is making sure the job is done right. (Suggests that quality of workmanship is often the primary motivator of completing a task.)

4. Recognize that autism is. (Autism is neither good nor bad. It just exists, and it’s up to us to make as much good from the condition as possible).

5. Empower others to lead fulfilling and productive lives. That’s the greatest gift we can give to an individual on the autism spectrum, and to the rest of humanity (That way, the individual on the autism spectrum will be fulfilled and productive, and society will receive the great benefits of that person reaching their highest potential.)

Garret Westlake

Garret Westlake is the Director of the Disability Resource Center at Arizona State University’s Polytechnic campus.  He is also the CEO and Founder of STEM Force Technology, a company that provides coaching and employment services for individuals on the autism spectrum.

1.  Hire someone with autism.  You don’t need to look very far to find exceptional people with exceptional talents.

2.  Learn from someone with autism. You might learn a new skill, a joke, or a fact, but you will definitely gain perspective, understanding, and appreciation for how someone else sees the world.

3.  Abolish average education.  Why do we strive for broad mediocrity in education? Encourage outliers. Create access and accountability in education for student strengths — not weaknesses.

4. Understand autism as diversity. If we still struggle with issues of race, gender, and sexual identity, where are we with accepting disability?  Disability is diversity too.

5.  Laugh.  Everyone needs more of it. We can all do it together.

Ari Ne'eman

Ari Ne’eman is the President and co-founder of the Autistic Self Advocacy Network. He currently serves as Policy & Program Evaluation Committee Chair for the National Council on Disability.

It has often been said that the United States lacks a national disability policy — instead, we have dozens of different disability policies, each developed for a different part and level of government and often conflicting with each other. The story of US disability policy is one of the slow development of different laws, programs and infrastructures, many of which still operate based on outdated and obsolete assumptions regarding the degree to which disabled Americans could be included in society. This reality significantly hinders the full realization of the civil and human rights of Autistic people and other people with disabilities. What would a national disability policy look like if it was aligned with the goals of the Americans with Disabilities Act?

1. Values-Based Policymaking: Research and science have always played a large role in disability policymaking, in large part due to a history of disability being viewed mainly as a public health issue. But while science can tell us much about how the world is, it falls to values to tell us how the world should be. When assessing the quality of different forms of service-provision, we should think about both efficacy and ethics.

2. De-Medicalization: Over the course of the last forty years, the de-institutionalization movement has made tremendous progress in closing large residential facilities which segregated disabled people from society, shifting funds into more individualized supports in  local communities. Although this is an important first step, ensuring that people with disabilities have access to choice and self-determination requires more than just moving from larger to smaller housing. It also requires a real sea change in how we approach disability services. We require a shift from the expectations of institutional life — which presumes a hospital environment, in which medical experts make decisions about patients — to the expectations of home life — where staff providing support to a person with a disability are working for the person and the pursuit of their goals and judgement.

3. Equal Protection of Law: Many of the worst injustices faced by people with disabilities would be considered illegal and the source of considerable public outrage were they to occur to a non-disabled person. Federal law allows for people with disabilities to be paid less than minimum wage. States with bans on corporal punishment nonetheless allow the use of “aversive interventions” — the inflicting of pain as a means of behavior modification for children and adults with disabilities — despite the fact that the two are indistinguishable from each other. When disabled people are killed by family members and caregivers, public sympathy is often with the killer, who will frequently receive a more lenient sentence than if they had murdered a non-disabled person. Only when labor laws, protections from abuse and torture, and other relevant legal rights are applied equally for people with and without disabilities will we move forward as a society.

4. High Expectations: Much of our disability policy is predicated on low expectations that can often become self-fulfilling prophecies. Students with disabilities who take the alternative assessment rather than the standard means of assessing student achievement are more likely to be segregated from the general education classroom, less likely to have received any literacy instruction, and frequently lack access to Augmentative and Alternative Communication supports that could help them better perform at their full potential. People on Social Security’s two disability income support programs (Supplemental Security Income and Social Security Disability Insurance) face a maze of bureaucratic regulations that often discourage or prevent attempts to return to the workforce or to save in order to develop assets. Changing the expectations our society has for people with disabilities was one of the main goals of the ADA. Now it is past time for the rest of our country’s disability policy infrastructure to catch up.

5. Disability as Diversity: There is a long history of both the public and private sector working to try to encourage diversity in education, the workforce and elsewhere in society. Unfortunately, people with disabilities are often excluded from these efforts. For example, much of the recent push on the part of the federal government to close disparities in health care outcomes on the basis of race, ethnicity, gender and sexual orientation excluded people with disabilities as yet another important under-served population. Many private sector affirmative action programs forget to or deliberately do not include disability, a failure that exists in higher education as well. Fortunately, some progress has been made in this sector, with the Obama Administration making the employment of people with disabilities within the federal workforce and among federal contractors a major priority. More work needs to be done to ensure that whenever we talk about addressing the needs of underserved populations or creating more diverse classrooms and workplaces, people with disabilities are not left out.

Liz Ditz and her grandson

Liz Ditz blogs at I Speak of Dreams.

1. Universal acceptance of the idea that “human abilities are a constellation, not a linear spectrum.” Universal acceptance of the big idea that different brains come with different strengths and weaknesses, and societies need all kinds of minds to be robustly healthy.  This is big-picture neurodiversity, embracing not only autism, but ADHD and other neurodivergencies now called dyslexia, dyscalculia, and so on.

2. Radical restructuring of the American pre-K-12 model along these lines: Make early childhood education a highly-valued, trained, and compensated profession (right now, early-childhood teachers make poverty wages and have little training in elements of recognizing neurodiversity and providing appropriate supports to kids who struggle.)

3. Make high-quality universal early education available to all, including specialized services and remediation, without having to qualify by testing. We know that there are areas in which autistic people (and other neurodiverse people) struggle, and these areas are often evident in very early childhood.  But getting help now requires going through testing, evaluation, and qualifying and continuing to qualify for “services.”  If we had a highly trained cadre of early childhood educators, some if not all of the helpful services would be available as a matter of course to students who needed them.

4. Make pre-K-8 teaching a highly valued, highly trained, and highly compensated profession, adopting some proven elements of the Finnish model:

All teachers have undergraduate degrees in a field of study other than education.

All teachers have graduate degrees in education.

Entry into teacher-training graduate programs is highly selective.

Teachers have several years of post-graduate mentoring with gradually increasing responsibility (as do physicians, with the progression of medical school > internship > residency before independent practice model.) As a result, teaching is a high-status and high-prestige profession, with a great deal of expertise gathered over years, and with continued professional development over time.

5. Eliminate the “wait to fail” and medical model for children experiencing school difficulties. Step in when pupils start to lag behind.

“A factor contributing to the success of the Finnish system is the use of early and powerful intervention when a student begins to fall behind. Frequent diagnostic testing (‘formative testing’) at early stages reveals students who need extra help, and the Finns provide it intensively, with one special-needs teacher for every seven special-needs students in some schools. The McKinsey report points out that, in Finland, about a third of students receive remediation.” — Patrick Basset, “The Finnish Model”

6. Replace the “medical model” with the “diversity model.” It turns out that all kids can learn, given good teachers, early and intensive intervention, and a supportive school and peer culture. U.S. schools need to move from a medical model (learning disabilities) to a diversity model (learning differences), and re-orient themselves to identify, value, and use a student’s strengths as “workarounds” and palliatives to weaknesses.

7. Focus on equity rather than competition.

“Since the 1980s, the main driver of Finnish education policy has been the idea that every child should have exactly the same opportunity to learn, regardless of family background, income, or geographic location. Education has been seen first and foremost not as a way to produce star performers, but as an instrument to even out social inequality. In the Finnish view, as Sahlberg describes it, this means that schools should be healthy, safe environments for children. This starts with the basics. Finland offers all pupils free school meals, easy access to health care, psychological counseling, and individualized student guidance.” — Anu Partanenen, What Americans Keep Ignoring about Finland’s School Success, The Atlantic.

Todd and Sam Drezner

Todd Drezner is the father of an autistic son and director of Loving Lampposts: Living Autistic.

1. Anyone who asks “Where are all of the autistic adults?” must make a donation to the Autistic Self Advocacy Network.

2. We should no longer describe autistic people as “high functioning” or “low functioning.” Supreme Court Justice Potter Stewart famously defined pornography by saying “I know it when I see it,” and many of us feel the same way about defining “low functioning” and “high functioning.”  But our instant definitions don’t hold up under scrutiny.

3. Every major autism organization in the country (and every minor one for that matter) should have at least three autistic people on its board.

4. Parents who receive a new autism diagnosis for their child should immediately be issued a copy of Jim Sinclair’s “Don’t Mourn For Us“ and a list of resources to help them.  These should include websites like The Thinking Person’s Guide to Autism, blogs by autistic adults such as Autistic Hoya, and blogs by parents of autistic children like We Go With Him and Mom-NOS.  Should there be additional room on the list, it might also include a few resources to avoid.

5. Fox should immediately cancel “Touch.”

Nick Walker Sensei

Nick Walker is an autistic educator, author, psychologist, activist, parent, and martial arts master. He holds an M.A. in Somatic Psychology from California Institute of Integral Studies, where he currently teaches in the Interdisciplinary Studies program. He is founder and senior instructor of Aikido Shusekai, an aikido dojo in Berkeley, California.

1. De-pathologize autism and autistic people. Autism is a natural form of human neurodiversity. Labeling it as a “mental disorder” or a “disease” has no scientific basis, has no benefit for autistic people or their families, and leads inevitably to stigmatization, shame, and marginalization. Blind people, Deaf people, and many other disabled people get the services and accommodations they need without being labeled as having mental disorders. We don’t have to call autism a disorder or a disease to acknowledge that it’s a disability that can require accommodations. Stop worrying about the latest changes to the DSM criteria, and just remove autism from the DSM entirely, like homosexuality was rightly removed years ago.

2. Use the language of diversity, not the language of pathology. Language matters. The language that is used in talking about autism and autistic people affects how autistic people are perceived — by themselves, by others, by society – and thus how they are treated. In an autistic-friendly world, anyone speaking of autistics would observe the same linguistic conventions that civilized, non-bigoted people observe when speaking of any other social minority group (e.g., African-Americans or gays). You wouldn’t say that an African-American “has negroism” or “suffers from blackness,” so don’t speak of an autistic person as “having” or “suffering from” autism.

3. Forget “normal.” Recognize that when it comes to human diversity — including the diversity of minds — “normal” is a highly subjective, culturally-constructed fiction. Recognize that there is no “normal” mind, and that conformity to the local conception of “normal” is in no way synonymous with health, well-being, or personal fulfillment – and is, in fact, often in direct conflict with those things. A healthy, thriving autistic person looks very different from a healthy, thriving non-autistic person. In nurturing the development of autistic individuals, the goal of parents, educators, therapists, etc. should be to produce healthy, thriving, autistic people, rather than autistic people trained to stifle their true selves in order to pass as “normal.”

4. Equal protection under the law, broadly interpreted and strongly enforced. Recognize autistic people as a social minority group, grant them the same legal protections that are (or should be) extended to ethnic minorities, interpret those protections as broadly as possible, and rigorously enforce them. When an autistic person is abused for acting autistic, prosecute it as a hate crime. Anytime an ABA “therapist” grabs an autistic child’s hands to stop her from stimming, prosecute it as criminal assault and as a hate crime. Individuals and organizations that speak of autism as a “disease” or “tragedy,” and talk of “curing” it, should be prosecuted for hate speech and incitement to violence, just as if they were advocating a “Final Solution to the Jewish Problem.” Anyone involved in seeking or implementing prenatal tests for autism or any other sort of prenatal prevention of autism should be prosecuted in international court under the Genocide Convention, which classifies as genocide any attempt to prevent births within a targeted group.

5. Work for global peace and economic justice. Many non-autistic parents worry that if they don’t subject their autistic kids to extensive (and expensive) “treatments” to bring them closer to “normal,” the kids will never be able to take care of their own basic survival needs, and will end up in awful institutions or on the streets. This is an entirely legitimate concern. But the reason it’s a concern is that we live in a world in which the forces of global capitalism have replaced the true spirit of community with an artificial sense of competition, isolation, and “every man for himself,” and in which all but the most wealthy are kept in a constant condition of anxiety and fear of scarcity. This is not the natural state of humanity, and not the way the world has to be. Every disabled person in the U.S. could be supported for life on a fraction of the money that our government spends killing people in the Middle East each year – to say nothing of the funds that would be available if we made giant corporations and the wealthiest 1% of Americans pay their fair share of taxes. Instead of working so hard to change autistic people in the name of helping them survive in a cruel world, why not work to make the world less cruel?

Julia Bascom

Julia Bascom is an autistic self-advocate who blogs at Just Stimming.

Obviously a lot more than these five things needs to be changed — but without these five, the rest won’t matter.

1. Stop killing us.

2. Stop abusing us.

3. Start recognizing our communication.

4. Slow down. Value us.

5. Stop killing us.

Rachel Cohen-Rottenberg

Rachel Cohen-Rottenberg is a wife, mother, writer, and artist on the autism spectrum. She blogs at Journeys with Autism and edits and publishes the site Autism and Empathy.

1. Understand that there are many ways to communicate, and that one is not better than another. I can’t read nonverbal signals. I have auditory delays. I need a little extra time to find the words. Sometimes, my words go up over mountains and down through valleys before I know that I’ve made myself clear. It’s not going to change, and my inability to change should not mean social exclusion. Please remember that I have the same need for connection and inclusion as you do.

2. Slow down when you speak. I need time to process what I hear and to come up with a proper response. Just as an able-bodied person should give space to someone attempting to board a bus in a wheelchair, or a hearing person should take a moment to write back and forth with a Deaf person ordering food in a restaurant, so a non-autistic person should take a moment to listen to and to communicate with an autistic person.

3. Remember that talking with a disabled person is not an heroic act. There is absolutely nothing required in the way of superhuman patience to communicate with a person with a disability, and stopping to listen to someone with atypical communication, far from being a charitable act, is an act of bringing a fellow human being into human community. Social inclusion and interaction, when someone desires them, are basic human rights that no disabled person should have to request, and that no able-bodied person with an ounce of ethical understanding should refuse.

4. Go outside your comfort zone. However uncomfortable, awkward, or annoying it may feel to deal with someone who puts out unexpected nonverbal signals (or none at all), or who speaks in an atypical manner (or not at all), it doesn’t hold a candle to how excruciating it is to go through the world isolated because people just feel too uncomfortable, awkward, or annoyed to deal with you. The discomfort, awkwardness, and annoyance of able-bodied people may only last a minute, or a half hour, or an hour, and then they go back to their regularly scheduled lives. Please imagine how it feels to keep meeting up with a world full of people who turn away, every day, because their discomfort trumps our longing.

5. Put yourself in our shoes. It is vital that able-bodied people consider how soul-wearying it is to keep trying until one finds those people who simply accept the awkwardness — my awkwardness, their awkwardness, our awkwardness — and make a connection. It hurts the heart to keep going out and trying. Ask yourself: What is keeping you from extending a word, a listen, a desire for connection to us? And how does your failure to use your social skills to bring other human beings into community translate into a social disability located in autistic people, rather than in the able-bodied world?

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." 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.

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.”

Silberman: That’s interesting. You talk in your book about how you weaned yourself from your daily chocolate-chip cookie habit. I know how hard that can be, but is that really the most intense addiction you’ve ever struggled with? Did you ever smoke?

Duhigg:  No, I’ve never had a smoking habit. But on the other hand, I do feel like I’ve pretty much struggled with my weight my entire life. It drove me crazy because I felt like I was a very successful person, so I should be able to… I should be able to master this. And it wasn’t until I started doing this research that I was able to basically change how I eat and how I exercise.

And what’s crazy is, within a year it totally shifted. I’ve lost 21 pounds in the last year, I’m running all the time, and I’m actually going be in a marathon later this year. I should have been able to do this ten years ago, right? If anything, I had more energy ten years ago. But understanding the structure of the habit loop has made a huge difference in my life.

Silberman:  That’s great. When I was reading the sections of your book about the importance of belief in behavior change, I was reminded of the placebo effect, which I wrote a long article about in Wired. As you probably know, the placebo effect is a physiological response — not just a psychological response — brought about by the belief that you’re getting medical treatment, even if all the man in the white coat is giving you is sugar pills. Why is something as abstract as “belief” so important when you’re trying to change behavior?

Duhigg:  That’s a fascinating parallel. I wonder if the placebo effect is stronger in groups of people who talk about how they’re taking a pill versus people who are just taking a pill on their own?

Silberman:  Absolutely. In his book Placebo Effects, researcher Fabrizio Benedetti talks about how hearing about the alleged effects of a drug from other people is one of the most placebogenic stimuli around.

Duhigg:  Right — it’s like in high school, when everybody’s doing drugs together, and the drug really turns out to be flour, but they keep talking about how much they feel it coming on.

Silberman:  ”I’m soooo high!” Hearing that from friends is enough to make some of the kids feel the effects of a faux drug.

Duhigg: There’s a woman named Lea Ann Kaskutas who is an alcoholism researcher in California. She’s one of the old-school AA researchers — and there aren’t that many of those, because people are so dismissive of AA. She said something to me that I think is really powerful. She was talking about why it’s important that AA takes place in a group. Obviously, part of it is the social support, right? There’s someone telling you “Good job!” and giving you positive feedback. But she also said that even if someone knows intellectually that they can quit alcohol, they’re going to forget that at some point. Emotionally, they’re not going to believe that they can do it. But then they’re gonna be sitting in an AA meeting, and they’re going to look across the room, and they’re going to say to themselves, “You know that guy Joe? Joe is a moron. If even Joe can quit, then I can definitely quit.” I don’t even know what you would call that kind of motivation. It’s the other side of the social support coin.

Silberman:  I loved how you analyzed the role of Rosa Parks‘ social networks in the Montgomery bus boycott, and how those networks played such an important part in the early success of the Civil Rights Movement. I wonder if you see any parallels in the gay-marriage movement, which has been amazingly successful in moving the mainstream toward favoring equality for all, despite the efforts of well-paid professional bigots like Maggie Gallagher of the National Organization for Marriage in spreading a lot of nonsense about how long-term, devoted gay couples are a “threat” to marriage or kids.

Rosa Parks at ground zero of the civil rights movement, Montgomery, Alabama, 1955.

Duhigg:  It’s happening amazingly quickly too, right? I was just talking to Michael Barbaro, one of our reporters who covers this issue, and I was saying  there needs to be a book about the gay-marriage movement. It must be working in the same ways that the early civil-rights movement did. We know that for a movement to take hold, for it to get widespread support, there are certain things that need to happen. It feels like most people who favor equality, when they talk to pollsters, tend to say things like, “I know someone who’s gay.”

Silberman:  That’s exactly what occurred to me when I read your book. I think the most powerful, transformative thing that gay-rights pioneers like Harvey Milk did was to urge every gay person to come out of the closet. The result of that push for public candor is that now everybody either knows a gay person or a gay couple themselves, or knows someone who knows a gay couple. That makes the marriage issue personal. Who wouldn’t want their Aunt Rose to be able to finally wed her friend Marian, and have all the rights and responsibilities of legal matrimony, when they’ve been devoted to one another for 30 years?

Look at Dick Cheney. He’s pro-gay marriage because his daughter is gay and he naturally wants her to have her best shot at happiness. I think you’re so right about how social ties and networks accelerate social change.

I don’t think it’s possible to deny gay couples marriage rights unless you turn them into something less than human in your mind, as Gallagher and GOP candidates like Rick Santorum and Mitt Romney do. Groups like NOM openly admit that they depend on the depersonalizing phrase “redefining marriage” to turn voters off to the idea of equality. They fight to get that precise language into these hateful amendments they’re bankrolling everywhere, because if it becomes obvious that you’re rewriting the state constitution to perpetuate the notion that gays are second-class citizens, most voters instinctively know it’s wrong. It’s as if NOM was waging a campaign against integration by claiming that letting black kids go to the same schools as whites is “redefining education.” My husband Keith and I didn’t redefine the traditional concept of marriage. We embraced it eagerly and enthusiastically the first chance we could.

Mormon mom breaks the homophobia habit. Photo by Steve Silberman.

Duhigg:  Did you find that people reacted to you guys differently once you were married?

Silberman:  Not that much. We’ve been together for 17 years, so everyone knows us as a couple. But what’s amazed me is how marriage transformed my own experience of our relationship.

Duhigg:  That’s interesting.

Silberman:  Yeah. One reason why I’m such an advocate for equality is that marriage has strengthened our relationship in ways that I could not have predicted. It put an end to a certain kind of equivocation: “Well, I hope this relationship works out.” Marriage gives you a solid rock to stand on. Of course, it turns out not to be so solid after all for about half the straight couples that get married these days, but for us anyway, it has enabled us to feel more secure and more deeply woven into the fabric of our extended families in many different ways. That’s one reason I think equality is so important.

Duhigg:  I completely agree. I started dating my wife in college, so I feel like getting married was always an inevitable possibility, because it’s always been legal for us. But what’s astounding to me is exactly what you said — how much it changes the relationship to say, OK, there are certain questions that are off the table now.

Silberman: Totally. So back to your book. We’re a society that struggles with the fact that so many people have damaging addictions like smoking and alcoholism. Knowing what we do about habit formation, is there anything that the government could do to discourage smoking, beyond printing pictures of bloody lungs on cigarette packs? Is there any way that social networks or interventions could be employed to make it easier for people to change their lives in healthy ways?

Duhigg:  Absolutely. There’s a little part in the book when I talk about the only time that the government successfully changed people’s eating patterns — when they got people to eat organ meats during World War 2. Granted, that was a weird time, but they did it by basically leveraging existing habits — by saying, “Let us teach you how to put kidney into your meatloaf.”

Rationing poster from World War Two.

So many campaigns that the government does right now essentially say, “Change your entire behavior” — without paying any attention to the cues and rewards, and without saying, “Let me explain to you why your family eats at McDonalds three times a week. I know that you don’t want to do that, and I know that just telling you not to do it isn’t going to work, so let me explain. Here’s where things are breaking down and you’re losing the time.”

Or telling people that if they set up the ingredients on their counter before they leave for work, it’s gonna be a lot easier to start making dinner when they get home. This is practical advice that no PSA ever includes, right? Why not? Why not have Michael Pollan talking about how to shop at the grocery store? Why isn’t that on ads in the subway?

They say “Read to your kids,” which is great, because we know if you read to your kids, they’ll do better in school. But that’s not how you create a habit. It’s just ordering people around. You have to say, “Before your kid goes to sleep, have a book on their pillow. Put it there in the morning so it’s a cue for you to pick up. And you know what? You don’t have to read the whole book, just read three pages. The reward is to let yourself watch TV for a half an hour afterwards, because you did a good job. That’s how to create a habit.

Silberman: One of the revelations of reading The Power of Habit was realizing how many hours of the day I spend running in zombie mode, just carrying out these behavioral loops. Did you experience a subjective difference in awareness of your own behavior after writing this book?

Duhigg's nemesis (New York Times recipe). Photo courtesy of Flickr user Jamison_Judd.

Duhigg:  Yeah, I did. I became much more aware of why I was doing things habitually. I became more aware of how to experiment in a finding a way to change my cookie habit. I also I got to a place where I could edit the book anywhere. I would start editing and get drawn into the text immediately. A lot of that was creating these work habits, or really, thinking habits to help me focus. I was much more conscious and deliberate about choosing cues and rewards. When I focused, I rewarded myself.

I think a lot of our instinct is to think that doing good work means just powering through it, then getting home and powering through the work some more. Instead, I spent some time really thinking about, “What do I enjoy during the day? What rewards are genuinely rewarding?” Making sure I gave rewards to myself for habits I wanted to encourage. Those behaviors definitely became easier. So writing the book changed my subjective experience of my life a lot.

Workout time. Photo courtesy of Flickr user maHidoodi.

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

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

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

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.

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.

Sonified screen shot

To give potential users a foretaste of the experience, Hall has uploaded videos to YouTube here, here, here, and here. But experiencing Sonified second-hand rather misses the point. The thrill of using the app is having it respond to optical nuances in real time as you move through spaces that come alive in new and surprising ways. Hall’s ethereal sonic palette may be a bit New Agey for some tastes, but the software offers a teasing glimpse of how much more we could be doing with these powerful multimedia platforms in our pockets. Sonified takes the often mundanely-applied concept of augmented reality (we were promised Terminator vision and got Plaxo QR codes instead) a step closer to the radical departure from sensory business-as-usual that 18th century multimedia pioneer William Blake described in The Marriage of Heaven and Hell:

How do you know but ev’ry Bird that cuts the airy way,
Is an immense world of delight, clos’d by your senses five?

Glad Day or the Dance of Albion, William Blake, circa 1794

I asked Hall, who lives in western Massachusetts, what it’s like to walk around every day with naturally augmented senses.

Steve Silberman: When did you figure out that you experience the world differently from most people?

Perry Hall: I’ve been experiencing two different kinds of synaesthesia since I was about 10 years old. The first is “colored hearing,” where sounds become very visual; and the other is a milder type of synaesthesia that is more directly connected to Sonified, in which images, color, and spaces like landscapes inspire tones and sounds. Both types are very emotional for me, and define a profound beauty that compels me to write music or create visual works of art that are reflections of it.

When walking through certain kinds of terrain — usually those involving vast spaces or interactions of light and color — these tones will become present. It’s usually in a natural environment, such as a beach, landscape, or other place where deep space and light can play, stretch, and unfold with a kind of purity. But it’s always there, at least in the background.  I was just in Wales taking a train along the Irish Sea, the landscapes that Turner captured in his paintings. I was filled with a lot of sounds as I moved through this environment.

Wreckers Coast of Northumberland, Joseph Mallord William Turner, circa 1836

I feel an intense identification with these spaces, as if the distance and distinction between myself and the environment is collapsing, and I identify with the sky or landscape and lose myself. The sounds that come from this environment blur the distinction between seeing and hearing into a single point. Visual dynamics create sonic dynamics — the two are joined, like a mirror, with visual qualities on one side and sonic qualities on the other. When the light slowly fades, the sounds fade; as the light shifts, increases, or decreases, the sounds shift equally. A circuit is made between seeing and hearing, but it’s not seeing and hearing, it’s see-hearing, seering, hearseeing — something distinct from merely a combination of the two senses that we think of as separate.

Silberman: What inspired you to try to make these experiences available to others?

Hall: Eighteen months ago, I was diagnosed with Stage 2 Lyme disease. I had it for over a year, including a fever that lasted for four months. Finding myself in bed, wondering what was going to happen, I had time to think. I realized it was important for me to make this strange and wonderful experience accessible to other people. I came up with a means of creating a “synaesthetic engine” that could translate light and color into sound. I wanted to put this engine into a camera anyone could use anywhere, rather than putting it in a gallery or museum. I wanted people to be able to walk through a desert or a city, to lay in bed or sit on a train, and have the same kind of experiences I can have anywhere. Knowing I was stuck in bed, a friend gave me an iPhone to play around with, and I saw it had all the pieces that I needed to set synaesthesia loose in the wild.

Silberman: How did you go about designing the software?

Hall: First I created the design documents — a set of charts showing one-to-one relationships between light and an audio mixer. You can look at a lot of artists and thinkers — going back to Pythagoras, Plato, Aristotle, Cardano, and Newton — who made similar charts, conceiving of various schemes to show relationships between color and sound. It’s a huge subject in science and history. For me, it was a little more simple — I was just trying to grasp the working parts of an experience I’d been having my whole life. In designing Sonified, I could always ask myself, “Is that what this color sounds like to me? Does that audio-visual behavior make sense? Is it the truth?” That kept me on course.

When I felt better,  I rolled up my sleeves and recorded 500 short pieces of music. I selected which ones were the most visual, and which worked together to create a true sense of what synesthesia is like. That process proved really interesting. What does red sound like? Blue? Green? Pitch black? Pure white light? I felt like I could write music for each color for the rest of my life.

Still from Perry Hall's video series Material Study, paint and ferrofluid, 2006

In general, the darker something is, the lower it sounds; the brighter, the more high-pitched. Blue and violet are the lowest colors to me; orange and yellow are the highest. Each visual element also has a temperature — orange, reds and yellows are hotter, while greens and blues are cooler.  Each visual quality or color is a timbre, a sonic texture, a pulse, a wave, an ambience, building off of the harmonic series, like stacking harmonics off of a string in a variety of timbres over many registers. But the most important thing is that the visuals and sounds are synched, locked, translated — in a one-to-one relationship in their behavior, proportion and dynamics.

I came to think about synaesthesia more poetically than scientifically. Instead of trying to create an app that was like a Geiger counter, I realized it was better to try and create something more like a guitar — a musical instrument rather than a scientific one. When something felt very subjectively right and truthful to my own experience of synaesthesia, I went with that, regardless of whether it fit into a pre-existing template of how “light relates to sound.”

Silberman: What kinds of feedback have you gotten from Sonified users?

Hall: Just about every person smiles when they put the headphones on and start moving the camera around.  How could they not get it? It’s what they do all the time anyway, seeing and hearing. They’re just doing it in a different way. I get the sense that they’re feeling something I’ve felt. That’s the greatest thing I can hope for, as an artist and a person — that we are all connected, sharing something we were a part of all along, but never knew about until that moment.

Nabokov's synaesthetic engine

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.

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.

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.

“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.”

The book doesn’t make light of the diligent work required to make the world a more comfortable, supportive, and joyful place for atypically developing kids, while helping them cope with the stresses and sensory challenges that are an inevitable part of life on the spectrum. But it also makes clear that one of the toughest things to deal with as a parent is the pervasive view of autism as a tragedy. The deeply networked science-and-tech-literate parents who put the book together have happy children who are respected and treasured for being who they are, rather than pitied as unwitting victims of a Big Pharma conspiracy. (That was cherubic Leo Rosa rocking the iPad in a clip played at Steve Jobs’ last keynote).

Leo Rosa loves his iPad.

“You will think you can’t handle it. You will be wrong,” writes Jess, one of the book’s contributors. “This is not an easy road, but its rewards are tremendous. Its joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.”

There are valuable lessons in this book even for those who have no direct personal experience of autism. Here’s Willingham, the TPGA team’s science editor, speaking frankly about what happens on the rare occasions she tells people her son is on the spectrum:

What response do you get from people when you mention your child’s difference or try to explain it to them? I can categorize our responses into three distinct groups.

From total strangers—and my mentions of autism in this context are rare—the response is pity. Clearly pity, and with it a lack of understanding of what I’m even talking about. And then, of course, I find myself struggling to clarify why pity simply isn’t necessary, to get across with pith what a great person my son is, what a total joy it is to have a wonderful person like him in my life. It’s rare that I bring up autism to strangers, although if I were savvier, I could use it as a way to enhance awareness and downgrade the pity response.

From casual acquaintances, such as parents of other children and periodically from others closer to me: “I don’t like labels.” “He seems like a pretty normal kid to me.”

These responses set my teeth on edge. They speak to so many things: Diminishing my son’s struggles. An accusation that we’re magnifying his struggles, or worse, have sought and gotten the “diagnosis du jour” of autism for a child who’s merely quirky. An implication that if we just left him alone without labels, he’d be just fine.

Of course, I have to forgive these responses. Sometimes, they’re just well meaning, an effort to say, “Well, even with that difference, he’s just a kid like other kids.” Sometimes, it’s exactly the implied criticism I think it is. But I must forgive. They know not of what they speak. How could they?

Invariably, these responses come from parents of neurotypical children. The fact is, they just don’t get it. They never will. Sorry, but unless you’ve spent hours wondering why your child’s anxiety leads to nonlinear, bizarre suicidal ideation at age three, you’re not gonna get it. Unless you look at your nine-year-old child and marvel at how far he’s come that he can say, “I’m going to go interact with that child over there,” and wonder if it’s the intensive therapies or your own efforts or his efforts or all of the above, you’re not gonna get it. Unless you’ve spent days fending off perseveration over strawberry plants because you unwittingly drove by a plant nursery, you’re not gonna get it.

TPGA science editor Emily Willingham and her youngest son at Ghirardelli Square in San Francisco.

One of the most progressive aspects of the Thinking Person’s Guide is that it includes a section of essays written by autistic people themselves, which gives it an intimate, insiders’ view of a way of being that is all too often depicted as an impenetrable enigma (represented by the ubiquitous puzzle-piece iconography employed by many fundraising organizations, which many self-advocates have come to detest). Their accounts indicate the pressing need to debunk stereotypes of autistics as either amazing savants or automatons who lack empathy, and to create neurodiversity-friendly workplaces — needs that are not addressed by the usual star-studded “autism awareness” campaigns that raise millions of dollars a year to scan genomes and hunt for new drug targets.

Rachel Cohen-Rottenberg, who has a new e-book out called Blazing My Trail, contributes a poignant reflection after being diagnosed in mid-life:

I have no inclination to ask who I might have been without being autistic. Being autistic is intrinsic to my life experience, to my insight, and to the gifts I bring. The One Above made me just as I am, and I respect that… The world is often not a safe and welcoming place for autistics. I have been bullied, and ignored, and left behind, in many different ways, all my life. And yet, I don’t wish I were different. I wish the world were different. I wish that more people defended the bullied rather than the bullies; I wish that more people took the time to get to know me and find out what a great good friend I am; I wish that more people were sensitive to all the things that autistic people need in order to live our lives with more joy and less fear, more inclusion and less loneliness.

Author/self-advocate Rachel Cohen-Rottenberg and her husband Bob Rottenberg.

For self-advocate Corina Lynn Becker, getting a diagnosis at 17 was not shattering, but empowering:

I want you to understand, that from my point of view, I did not suffer from autism. That is, autism does not cause me pain. It creates struggles and challenges, yes, that can be disabling, but the pain and suffering that I went through happened because of two things: being undiagnosed and not having the knowledge for supports and accommodations.

In other words, I struggled because nobody knew exactly what I was struggling with, and because I did not have the words to describe my difficulties. For me, the rising autism rate represents a rising rate in awareness and knowledge and a hope that fewer and fewer children will be mis-, under- and un-diagnosed, until not one child slips through the cracks. With that hope, there is a chance to make a difference, to ensure that each child gets exactly what he or she needs and requires in order to succeed.

Self-advocate Corina Becker.

For parents who are rapidly reorienting in the wake of a child’s diagnosis, this book can play the role of a seasoned mentor who relieves the burden of unnecessary worry and grief while providing a detailed map of the road ahead.  Here’s Susan Walton on the importance of building a network of other parents who understand:

I have friends whom I met sitting in waiting rooms during the first weeks following my son’s diagnosis. When we looked at each other back then, our eyes told our whole story. We were all sick at heart and desperately trying to make sense of the news and figure out what to do. And it is amazing how strong we look to each other now. When we run into each other or find time for a coffee date, we see entirely different people looking back. Even as we are sharing news about the latest round of problems in our lives, the difference is amazing. We are in control and things are moving forward every day. We see battle-scarred but victorious soldiers in each other. These are valuable friends indeed.

The takeaway from the Thinking Person’s Guide is: You can do this, and you will become a wiser and stronger person for helping your son or daughter grow into the most creative, aware, loving, self-confident, and independent person that he or she can be. I’m grateful for this uplifting book, which has the potential to transform lives and society for the better — in this generation and the next.

Leo's music lesson with self-advocate Stephen Shore.

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:

How did we get from there to here?

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.

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.

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.

Kare’s first assignment was developing fonts for the Mac OS. At the time, digital typefaces were monospaced, meaning that both a narrow I and a broad M were wedged into the same bitmapped real estate — a vestigial legacy of the way that a typewriter platen advances, one space at a time. Jobs was determined to come up with something better for his sleek new machine, having been impressed by the grace of finely wrought letterforms in calligraphy classes he audited at Reed College, taught by the Trappist monk Robert Palladino, a disciple of master calligrapher Lloyd Reynolds. (The lasting impact of Reynolds’ instruction can also be seen in the playful cursive of the seminal West Coast Beat poets Gary Snyder and Philip Whalen, making Reynolds and Palladino the human hyperlinks between desktop publishing and Jack Kerouac’s Dharma Bums.)

For the Mac, Kare designed the first proportionally spaced digital font family that allowed text to breathe as naturally on the Mac’s white screen as it does in the pages of a book. The distinctive Jobs touch was upgrading the original monikers of these elegant typefaces from the names of train stations near Philadelphia — like Rosemont and Ardmore — to those of world-class cities like Geneva, Chicago, and New York.

Inspired by the collaborative intelligence of her fellow software designers, Kare stayed on at Apple to craft the navigational elements for Mac’s GUI. Because an application for designing icons on screen hadn’t been coded yet, she went to the University Art supply store in Palo Alto and picked up a $2.50 sketchbook so she could begin playing around with forms and ideas. In the pages of this sketchbook, which hardly anyone but Kare has seen before now*, she created the casual prototypes of a new, radically user-friendly face of computing — each square of graph paper representing a pixel on the screen.

First Kare sketched a pointing finger for the “paste” command, using a pink magic marker.

Then she sketched a paintbrush with some paint on it.

She drew a pair of scissors for the “cut” command.

And she drew a bitmapped hand — the primitive progenitor of all the “pan hands” sliding invisible sheets of paper in programs like Adobe Photoshop and Illustrator.

She sketched an icon for “stop.”

And a symbol for “danger.” (The skull-and-crossbones design would come in handy when Jobs issued one of his infamous motivational koans to the Mac team: “It’s better to be a pirate than join the Navy.” Painted on a flag, Kare’s Jolly Roger was hoisted outside of the Mac skunkworks in Bandley 3.)

And she sketched a pair of complementary bitmaps for Apple itself.

Kare also drew some frankly goofy stuff, like an icon for “auto indent” that was a bit too literal.

And two equally whimsical icons for a programming instruction called “jump.”

She also came up with ideas for a term she heard the programmers using as they raced to meet Jobs’ punishing deadlines: “debug.”

And for “boot,” she drew an icon worthy of Nancy Sinatra.

Once software was developed that enabled Kare to start brainstorming digitally, she mined ideas from everywhere: Asian art history, the geeky gadgets and toys that festooned her teammates’ cubicles, and the glyphs that Depression-era hobos chalked on walls to point the way to a sympathetic household. The symbol on every Apple command key to this day — a stylized castle seen from above — was commonly used in Swedish campgrounds to denote an interesting sightseeing destination. [Note: See comment by Lennart Regebro below for an even older citation of the design.]

Kare’s work gave the Mac a visual lexicon that was universally inviting and intuitive. Instead of thinking of each image as a tiny illustration of a real object, she aimed to design icons that were as instantly comprehensible as traffic signs.

There was an ineffably disarming and safe quality about her designs. Like their self-effacing creator — who still makes a point of surfing in the ocean several mornings a week — they radiated good vibes. To creative innovators in the ’80s who didn’t see themselves as computer geeks, Kare’s icons said: Stop stressing out about technology. Go ahead, dive in!

And dive in we did, en masse. In the Wall Street Journal recently, Steven Johnson, author of Where Good Ideas Come From and other smart books, recalled the thrill of seeing the first computer he ever considered buying: “One look at the Mac and you could tell something was different. The white screen alone seemed revolutionary, after years of reading green text on a black background. And there were typefaces! I had been obsessed with typography since my grade-school years; here was a computer that treated fonts as an art, not just a clump of pixels. The graphic interface made the screen feel like a space you wanted to inhabit, to make your own… The Mac was a machine you wanted to live in.”

Many of us are living there still; and you can find the myriad visual descendants of Kare’s sketches in desktops, laptops, tablets, and phones today.

At the same time, as hardware has become faster, cheaper, and more powerful, interface designers have moved away from spare, economical road-sign style icons, and now favor the lush, elaborately rendered, 3D virtual objects that fill up the screens of our mobile phones and tablets, complete with faux shadows and glistening highlights.

For Kare herself, the Apple years were just an initial milestone in a distinguished career that has included designing icons for the Windows and IBM OS/2 operating systems, bitmapping the virtual deck in the Windows version of Solitaire, crafting logos for startups, creating products for New York’s Museum of Modern Art, and making fine-art prints of memorable icons like the Bomb, the Watch, the Paint Can, and the taxonomically ambiguous Dogcow.

For years, thousands of Facebook users a day swapped Kare-designed birthday cakes, engagement rings, roses, and disco balls, never knowing they were made by the same artist whose smiling image of the Happy Mac greeted a generation at the threshold of a new world.

In time for the holiday season, Kare has self-published her first book, Susan Kare Icons, with copies signed by the artist available on her website. A modified version of this essay serves as the introduction, though the hand-drawn icons seen here are not included in the book.

I asked Kare if she had any feeling at the time that the work she was doing at Apple 30 years ago would be so pervasively influential. ”You can set out to make a painting, but you can’t set out to make a great painting,” she told me. “If you look at that blank canvas and say, ‘Now I’m going to create a masterpiece’ — that’s just foolhardy. You just have to make the best painting you can, and if you’re lucky, people will get the message.”

"Susan Kare Icons," available at kareprints.com

[*Some of these icons were included in my presentation for Pop-Up Magazine #5 at Davies Symphony Hall in San Francisco on November 9, 2011. Thanks to the Pop-Up editors and contributors for a marvelous evening. All icons used with the permission of Susan Kare.]

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.

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.

Not too long ago, a colleague commented that I should be proud for being so nearly “indistinguishable from my peers.” Only in the autism community would anyone consider that a compliment. Despite the good intentions behind the remark, I felt a profound sense of hate and disgust motivating it — not of me as an individual, but of the person I was growing up, and of the person I still am, hidden underneath layers of mannerisms and coping strategies and other social sleights of hand. Those kinds of statements define our worth as human beings by how well we do looking like people whom we’re not. No one should have to spend their life hiding who they are.

As for the path of prevention, I’ve never seen that as particularly realistic. Not only because I like my brain the way it is and am worried about the ethical consequences of breeding “better” human beings, but also because I know that if people like me didn’t exist, the stigma and prejudice that sometimes makes our lives difficult wouldn’t go away – it would just move along to another group. Disability has always been a fluid concept, and I don’t imagine for a moment that preventing the existence of the next generation of disabled people would or could eliminate the place we’re put in within the social hierarchy. Besides, I think we have better solutions available to us.

To me, the better option has always been filling the gap between what we need and what we can get from society with each other. As we work to make the world better, we can provide ourselves with a place where we feel safe and understood, even if we don’t yet feel that way in the broader society. Every time we speak up about what being Autistic means to us as opposed to those who speak on our behalf, we can empower other Autistic people to do the same thing. Every time one of us comes out of the closet in a place where people don’t expect people with our kind of brain to be, we carve out a little bit more cultural space that we can claim for our community. What if the next generation of Autistic people grew up with the idea of Autistic community and culture an ever-present factor in their lives? What if we took our individual experiences and turned them into a collective narrative, as so many other minority groups have done across history? What if we knew, that even when life was hard and the world at large didn’t understand, that we would always have the chance to connect with those of us who have gone through the same struggles? Whether it’s through creating resources by and for our community – like ASAN’s new Navigating College handbook – or just connecting with other autistic adults informally in social groups or online, I feel that Autistic community is and can be a revolutionary concept.

That is what Autistics Speaking Day means to me. For those of us who have spent our lives being discounted as voiceless or being told that our experiences don’t count, the act of speaking up matters. And while we should do it every day, this holiday gives us the chance to do it not only as individuals but as a community, to braid our individual narratives into a collective one. Most importantly, it sends a powerful message to any Autistic person who hears in the voices speaking up today an echo of their own lives: no matter where you are or what you’re going through, you aren’t alone.  Community matters.