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.