Posted on Categories Blog

My Next Book: The Taste of Salt

I’m happy to announce that I’m hard at work on my next book, The Taste of Salt, which will tell the human stories behind one of the most impressive, but little-known, medical successes of our time: the transformation of cystic fibrosis from an inevitably fatal childhood disease to a chronic and manageable condition of adulthood – a goal that will be within reach in the coming years…

Steve with Travis Flores, producer/writer, cystic fibrosis survivor, and two-time double-lung transplant recipient.

I’m happy to announce that I’m hard at work on my next book, The Taste of Salt, which will tell the human stories behind one of the most impressive, but little-known, medical successes of our time: the transformation of cystic fibrosis from an inevitably fatal childhood disease to a chronic and manageable condition of adulthood – a goal that will be within reach in the coming years. The book will be published in 2022 (or so) by Avery/Penguin Random House, and I’m happy to say that I’ll be working with Megan Newman, the astute and insightful editor who whipped NeuroTribes into shape. I also have a new literary agent, Suzanne Gluck of William Morris Endeavor, who has represented some of my favorite writers, including the late neurologist/author Oliver Sacks, who wrote the introduction to NeuroTribes. I’m honored to be working with Megan and Suzanne on The Taste of Salt.

Three years after the publication of NeuroTribes, I’m deeply grateful to readers all over the world who took its message of honoring neurodiversity and fighting for dignity, autonomy, and full inclusion for people with cognitive disabilities to heart. Much progress has been made toward these goals since the book came out, but there’s still a long way to go. I’m so impressed by the autistic self-advocates who have taken the lead in many grassroots efforts worldwide. One of the reasons that my next book will not be about autism is because I believe autistic people should be taking center stage in this ongoing societal conversation. I wish them luck, and am grateful for their support and teaching during the most exciting ride of my career as a writer.

One of the questions I get asked most frequently about NeuroTribes is whether I have a family connection to autism. I don’t – but one of my closest and most treasured friends, a wonderful guy in his early 30s, has cystic fibrosis. When he was born three decades ago, parents of children with CF were told to bring their babies home and enjoy them for a few years, because that’s all the time they would have together. Life with CF is still very difficult, requiring hours of treatments and therapies daily, but that may eventually start changing with the advent of new drugs that target the so-called “basic defect” in CF, a spectrum of genetic mutations that interfere with the transport of chloride ions in cells, disrupting nearly every major system in the body. Until that happens, many CF patients will require a double-lung transplant at some point in their lives. But the extension of the life-span of CF patients into middle age and beyond is nothing less than astonishing, enabling them to have families of their own.

Among the many complex social issues my book will address are the high costs of these life-saving drugs and medical care in general, the difficulty of getting listed for a transplant, and so on. I have no doubt that cystic fibrosis will prove to be as rich a field for historical exploration as autism was. I have already been tremendously inspired by the CF patients I’ve met as I undertake my research, who must learn to navigate a health-care system designed to maximize profit from a very young age. This book will be for them.

I also plan on reviving my blog, which previously lived at the Public Library of Science, on this website. As always, I will use this space to bluntly speak my mind about the issues I care about. I will also feature excerpts from some of the historically significant interviews I conducted for NeuroTribes, including one of the last interviews ever given by Lorna Wing, mother of the autism spectrum, and one with Ari Ne’eman, cofounder of the Autistic Self-Advocacy Network, who is currently writing his own book I’m excited about, The Right To Live In This World: The Story of Disability in America (Simon & Schuster, 2021).

Thank you for coming with me on this journey, and please follow me on Twitter at @stevesilberman for the latest news.

Posted on Categories Articles & PressTags

Greta Thunberg is not a climate activist “in spite of” her autism, but because of it

Watching video of Greta Thunberg addressing the House of Parliament in London on April 24, it’s hard not to think of Cassandra, the brash young warrior of Greek myth who beseeched Apollo for the gift of prophecy. The petulant god granted her wish, but then punished the girl by decreeing that her predictions would be ignored “as idle wind in the hearers’ ears.”

“You lied to us. You gave us false hope. You told us that the future was something to look forward to,” said the 16-year-old environmental activist, who has become the stern face of a global movement of young people enraged by the idea that careless decisions made by their parents’ generation will doom them to an apocalyptic future. “Those who will be affected the hardest are already suffering the consequences. But their voices are not heard. Is my microphone on? Can you hear me?”

Posted on Categories Articles & PressTags

Broken Time: Bill Evans, ‘Nardis,’ and the Curious History of a Jazz Obsession

It was supposed to be the best day of Richard “Blue” Mitchell’s life, but June 30, 1958, turned out to be one of the worst. The trumpeter had been summoned to New York City from Miami for a recording session with Julian “Cannonball” Adderley, an old friend who was being hailed as the hottest alto sax player since Charlie Parker.

But things started going wrong even before Mitchell arrived at Reeves Sound Studios on East Forty-Fourth Street. First, his luggage went astray en route from Florida. Then there was a surprise waiting for him in the control room: Miles Davis, one of his musical heroes, who had taken the extraordinary step of composing a new melody as a gift to Cannonball. Mitchell was supposed to play Miles’s part.

Posted on Categories Articles & PressTags

Making Encounters with Police Safer for People with Disabilities

From The New York Times: An Op-Ed essay last month about the fraught encounter between an Arizona teenager with autism, Connor Leibel, and a police officer inspired thoughtful comments, so we invited the author, Steve Silberman, to address a few in this follow-up.

This is a follow-up to an op-ed that was published in The New York Times.

Posted on Categories Articles & PressTags

The Police Need to Understand Autism

Rob Zink, an officer with the St. Paul Police Department in Minnesota, talked with a 12-year-old boy who has autism. Officer Zink founded a program to train his fellow officers how to interact with autistic people. Photo: Leila Navidi/Star Tribune

Diane Craglow was caring for a 14-year-old autistic boy named Connor Leibel in Buckeye, Ariz., one day in July. They took a walk to one of his favorite places, a park in an upscale community called Verrado. She was not hesitant to leave Connor alone for a few minutes while she booked a piano lesson for his sister nearby, because he usually feels safe and comfortable in places that are familiar to him, and he learns to be more independent that way.

When Ms. Craglow returned, she couldn’t believe what she saw: a police officer looming over the boy with his handcuffs at the ready, pinning him to the ground against a tree. Connor was screaming, and the police officer, David Grossman, seemed extremely agitated.

A follow-up to this op-ed was published in The New York Times.

Posted on Categories Articles & PressTags

Misdiagnosed And Misunderstood: Steve Silberman On The Mysteries Of Autism (by Mark Leviton)

Steve with autistic teenager Leo Rosa. © Carlos Chavarría

From Mark Leviton in The Sun: […] In 2001 Steve Silberman, then head science writer for Wired magazine, was working on an article about two leading figures at technology companies when he learned that both had autistic children. He was talking to a friend over lunch about this seemingly unusual coincidence when a woman at the next table overheard and told him there was an “epidemic” of autism in the high-tech world of Silicon Valley. Silberman did some research and found there was indeed a high incidence of autism in the area. In his experiences interviewing tech workers at Google, Microsoft, and Apple, he had noticed that many of them exhibited autistic traits — difficulty reading body language and facial expressions, for example.

The article Silberman wrote about the phenomenon, titled “The Geek Syndrome,” inspired hundreds of responses from parents of autistic children and autistic people themselves. For Silberman it was the beginning of a long fascination that would eventually lead to his 2015 book, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.

Silberman’s work is part of a larger change in how autism is viewed. In 2013 the diagnosis was reclassified as “autism spectrum disorder” to acknowledge that it encompasses a wide range of people with varying degrees of disability. “Autistic people know better than anyone that autism includes deficits, but it also brings gifts,” Silberman says. Though not a scientist, he has written about science for fifteen years, and every citation in NeuroTribes is thoroughly documented in forty pages of notes. […]

Posted on Categories Articles & PressTags

Autistic people are not failed versions of ‘normal.’ They’re different, not less (Presentation)

We are living at a very exciting time — a time of great hope for autistic people and their families. Society is on the brink of a major transformation in its understanding of autism and other developmental disabilities, and everyone on the leading edge of this transformation — whether they’re a teacher, a policymaker, a disability-rights advocate, the parent of a child on the autism spectrum, an autistic person themselves, or several of these things at once — is playing a crucial role at this long-awaited turning point in history.

We’re evolving as a society from viewing people with autism merely as checklists of deficits and dysfunctions — seeing them solely through the lens of pathology, only in the light of the things they can’t do or struggle to do — to viewing autism as another way of being human, with its own distinctive strengths and positive attributes as well as profound challenges.

Posted on Categories Articles & PressTags

The forgotten history of autism

From ted.com: Decades ago, few pediatricians had heard of autism. In 1975, 1 in 5,000 kids was estimated to have it. Today, 1 in 68 is on the autism spectrum. What caused this steep rise? Steve Silberman points to “a perfect storm of autism awareness” — a pair of psychologists with an accepting view, an unexpected pop culture moment and a new clinical test. But to really understand, we have to go back further to an Austrian doctor by the name of Hans Asperger, who published a pioneering paper in 1944. Because it was buried in time, autism has been shrouded in misunderstanding ever since. (This talk was part of a TED2015 session curated by Pop-Up Magazine: popupmagazine.com or @popupmag on Twitter.)

You can also read Thu-Huong Ha’s article about the talk on the TEDBlog.