In a Different Key: The Story of Autism (101 page)

In the same vein, John thanks Ken Weinstein, Amy Kauffman, Jeffrey Goldberg, Mark D’Anastatio, Elisa Tinsley, Jeanie Milbauer, Gerry Ohrstrom, Laurie Strongin, Allen Goldberg, David Dunning, and Jacqueline and John Bredar, for their own soulmate qualities—and for sustenance both moral and culinary. It also helped to have a short list of fellow writers/authors/producers, who are also friends, checking in from time to time, rooting for us, reading a chapter here or there, and providing fact-checking, advice on tone, lessons on book-writing, and encouragement overall. Thanks for the always well-timed assists from Rick Beyer, Ethan Bronner, Lisa Dallos, Sue Goodwin, Deborah Lewis, Richard Mark, Barbara Moses, Elissa Rubin, Chris Schroeder, Ken Stern, and Jay Winik. John also found enormous support from the driving forces behind his “other” big project of the last few years, moderating the Intelligence Squared US Debates, whose founders, Robert Rosenkranz and Alexandra Munroe, and superb executive producer, Dana Wolfe, understood early that the “distraction” would always be temporary. Their goodwill counted for a lot.

We got our running start at reporting on autism thanks to our bosses at ABC News, who heard us near the end of the last millennium when we suggested that autism was a topic worth covering regularly, but from the perspective of lives and science, and not as a compendium account of fads, miracles, and guys doing calendar calculations. As a result, in 2000, ABC became the first network to start treating autism as something of a real and serious beat—eventually branded
Echoes of Autism
—which, for nearly a decade, was ours. As television is so collaborative, credit for our work on
Nightline
and
World News
must be shared with the managers who found room for it and the colleagues who helped make it better and often beautiful, especially Akram Abi Hanna, Jon Banner, Tom Bettag, Tom Budai, Jeanmarie Condon,
Dennis Dunleavy, Tommy Fasano, Roy Garlisi, Charlie Gibson, James Goldston, Dan Green, Mimi Gurbst, Katie Hinman, Gerry Holmes, Peter Jennings, Tom Johnson, Sara Just, Ted Koppel, Cynthia McFadden, Tom Nagorski, Diane Sawyer, Stu Schutzman, Ben Sherwood, Roxanna Sherwood, Leroy Sievers, Madhulika Sikka, George Stephanopoulos, David Zapatka, and many others. Later, Caren continued the streak by producing the series
Autism Now
for the
PBS NewsHour
, where she shared credit with, and deeply admired, Robert MacNeil, Linda Winslow, and Ray Conley, who were committed to portraying autism in all of its subtle complexity.

Getting to know so many members of the autism community through our television work—people on the spectrum, as well as those trying to help and understand—served as a years-long seminar in the depth and the idiosyncrasy of autism. As subjects and participants in our early stories, these people are all present in this book, even if unnamed in the text. Standing out among them, from different points on the spectrum, are Jacob Artsen, Billy Bernard, Daniel Corcoran, Josh Devries, Paul DiSavino, Jamie Hoppe, Clayton Jones, Noah Orent, Andrew Parles, Isaiah Paskowitz, Madison Prince, Ian Rager, Victoria Roma, Kaede Sakai, and Mackenzie Smith. And among their family, teachers, and therapists: Jed Baker, Marlene DiSavino, Julie Fisher, Doug Gilstrap, Jan Hoppe, Susan Hamarich, Kenneth Hosto, Jimmy Jones, Judy Karasik, Jim Laidler, Don Meyer, Brenda Myers, Karrie Olick, “Izzy” Paskowitz, Craig, Jeffrey, and Lisa Parles, Christi Sakai, Karen Siff-Exkorn, Franklin Exkorn, and Jake Exkorn.

We also thank the editor in chief of
The Atlantic
, James Bennet, for publishing our original profile of Donald Triplett. Chris Orr’s brilliant editing brought forth the best from that story (the title, “Autism’s First Child,” was his idea) and helped make us finalists for a 2011 National Magazine Award. The article’s appearance also revived our interest in writing a book, an effort we had initiated in 2007 but let flag by 2010 (because TV takes so much time). It was John’s wife who suggested that, if there was to be no book, we at least publish our account of Donald Triplett’s life, which we had already researched, in a magazine.

Obviously, as the book in your hands attests, that proved a turning point. A further five years spent exploring autism’s backstory leaves us
with a great deal more people to thank, for giving of their time and expertise, in their homes, offices, clinics, labs, and libraries. These include the following—all of whom we met, in person (in most cases), by phone, or by Skype—between the spring of 2010 and the summer of 2015.

In Mississippi: Allen Breland, Bob Brown, Janelle Brown, Ralph Brown, Tom Burns, Millie Clark, Lisa Davis, Albert Earle Elmore, Buddy Lovett, John Madden, Jan Nester, James Rushing, John Rushing, Ralph Ryan, Sid Salter, Constance Slaughter-Harvey, Celeste Sly, David Tedford, Yvonne Theriot, Donald Triplett, Ingrid Triplett, Oliver B. Triplett III, Gene Walker, Thomas E. Walker Jr., Brister Ware, Suzanne Wilder, and Jamie Woods.

Elsewhere in North America: Dan Amaral, Susie Arons, Sid Baker, Alice Barton, Sharmila Basu, Peter Bearman, Liz Bell, Sallie Bernard, Ed Berry, Douglas Biklen, Janyce Boynton, Timothy Buie, Marc Bush, Joseph Buxbaum, Betty Camp, Norman Camp, Norman “Normie” Camp IV, Dick Cavett, Maynard Clark, Edwin Clayton, Shirley Cohen, Brenda Considine, Daniel Corcoran, Jacqueline Crawley, Moira Cray, Chris Crean, Katherine Crean, Lorenzo Dall’Armi, Gerry Dawson, Brenda Denzler, Brenda Deskin, Anne Donnellan, Leon Eisenberg, Celine Ennis, Gal Evra, Liz Feld, Linda Fiddle, Julie Fisher, Audrey Flack, Hannah Flack, Arthur Fleischmann, Carly Fleischmann, Tammy Fleischmann, Meg Flynan, Michael Flynan, Michael Flynan Jr., Nell Floyd, Susan Folstein, Eric Fombonne, Richard Foxx, SueAnn Galante, Emily Gerson Saines, Daniel Geschwind, Junie Gibson, Bob Gilhool, Tom Gilhool, Deb Gordon, Judith Gould, Temple Grandin, Gina Green, Julius Griffin, Richard Roy Grinker, Lee Grossman, Kimberly Gund, Debbie Hagen, Martha Herbert, Irva Hertz-Picciotto, Saima Hossain, Tom Insel, Robert Ito, Portia Iversen, Brian Iwata, Rose Jochum, Suzanne Kaplan, Ami Klin, Lynn Koegel, Robert Koegel, Connie Lapin, Harvey Lapin, Shawn Lapin, Barry Levinson, Eric London, Karen London, Cathy Lord, Ann Lotter, John Maltby, Robert Marcus, Catherine Maurice, Gary Mayerson, Cece McCarton, Darius McCollum, Tony Meyers, David Minier, Linda Morrissey, Soma Mukhopadhyay, Tito Rajarshi Mukhopadhyay, Kevin Murray, Gail Mutrux, Mary Ellen Nava, Ari
Ne’eman, Craig Newschaffer, Paul Offit, Jon Pangborn, Joseph Piven, Alex Plank, Douglas Plank, Mary Plank, Arnold Pollak, Richard Pollak, Jalynn Prince, Barry Prizant, Ellen Rampell, Lyn Redwood, Denise Resnick, Gloria Rimland, Mark Rimland, Rick Rollens, Michael Rosen, Alvin Rosenfeld, Chris Saddler, Sid Salter, Bonnie Sanabia, Barb Savino, Greg Savino, Ross Savino, Craig Schaeffer, Lenny Schafer, Kathleen Seidel, Howard Shane, Paul Shattuck, Lori Shery, Jon Shestack, Chantelle Sicile-Kir, Bryna Siegal, Lorraine Slaff, Ilana Slaff-Galatan, Michelle Smigel, Robert Smigel, Mike Smith (Halifax), Tristram Smith, Cecile Snider, Stuart Spielman, Joe Sullivan, Ruth Sullivan, Rita Tepper, James Todd, Janet Twyman, Daniel Unumb, Lori Unumb, Judith Ursitti, Fred Volkmar, Mary Lou “Bobo” Warren, Aislinn Wendrow, Ian Wendrow, Julian Wendrow, Jim Wheaton, Suzette Wheaton, Philip Worden, Bob Wright, Suzanne Wright.

In France: Katrina Alt, Laurent Alt, Françoise Ayzac, Laurent Damon, Laurent Dillion, Pierre Delion, Diane Fraser, Eric Laurent, Sophie Roberts.

In Vienna: Herwig Czech and Arnold Pollak.

In Tel Aviv and Nazareth: Edna Mishori and Eti Dromi, and Juman Tannous.

In Copenhagen: Steen Thygesen, Thorkil Sonne.

In the UK: Simon Baron-Cohen, Adam, Heather, and Sandra Barrett, Brian Deer, Judith Gould, Hephzibah Kaplan, Jeremy Laurance, Janis McKinnon, Michael Rutter, Marion Stanton.

In South Africa: Claudia Ceresa, Kenneth Moeketsi, Mary Moeketsi, Phindle Nikosi, Sanele Nikosi, Jill Stacey, Louise Trichadt, Ronel Van Bijon, and the few dozen mothers and educators we met at schools and in tiny villages along the way.

There is also a small circle of sources whose names we pulled out of the above paragraphs to single out for special thanks, owing to their willingness to take calls from us repeatedly over the years, acting, as we thought of them, as our overall autism history brain trust. Each was especially good at pointing us to other writing and opening doors, often making introductions on our behalf. Therefore, we especially thank: Peter Bell, Michael John Carley, Stephen Edelson, Judy Favell, Adam Feinstein (a most generous colleague, whose own book,
A History of Autism
, we highly recommend), Gerald Fischbach, Uta Frith, Pete Gerhardt, Ilene Lainer, Lee Marcus, Gary Mesibov, John Elder Robison, Andy Shih, Alison Singer, Bridget Taylor, and, for his unrelenting graciousness the several dozen times we phoned over eight or nine years, Oliver B. Triplett Jr.

We discovered repeatedly that professional librarians love the hunt, and have a magic touch for finding gold. We acknowledge the spirit and intrepidness of our fellow searchers at the National Library of Medicine in Bethesda, Maryland, especially Cynthia Burke, Ryan Cohen, Liliya Gusakova, Lalitha Kutty, Ellen Layman, Wanda Whitney, and Marcia Zorn. Thanks also to librarians Gary McMillan at the American Psychiatric Association, Arlene Shaner at the New York Academy of Medicine, and Virginia Gillham at the University of Guelph. The same goes for library staff at the Autism Society of America, Bowie State University, Brooklyn College Archives and Special Collections, Columbia University, Georgetown University, Howard University, Pennsylvania State University, the Martin Luther King Public Library of Washington, DC, the Medical Archives of the Johns Hopkins Medical Institutions, the New York Public Library, the Rockefeller Archive Center, the Teaneck and Tenafly, New Jersey, public libraries, the University of Chicago, and the University of the District of Columbia.

Finally, there were our allies at Penguin Random House, beginning with Molly Stern, Crown’s publisher, who believed enough in our idea not only to buy it, but to take us at our word when we came back not once, but twice, to explain that another deadline extension would produce a better book. Throughout, Molly remained committed to providing us with all necessary support to continue and complete the research and writing. Early on, Vanessa Mobley’s passion for the project played a vital role in helping us to choose which paths to go down. We thank Rachel Klayman, our editor, who inherited this book and embraced the mission with full enthusiasm and instant insight about its purposes and possibilities. She was our champion at 1745 Broadway. Her grit, flexibility, and well-sharpened talent for language carried us over the finish line. Publicist Sarah Breivogel brought talent, drive, and energy to the project of getting our book into the hands of as many readers as possible. Her already formidable multitasking skills
were tested by dealing with not one but two authors who also work in the media and are used to being in charge, and she responded with grace. Danielle Crabtree brought her creative ideas and easy demeanor to the complex task of marketing our book, not only to mainstream readers but also to the autism community. We also thank the Crown team devoted to designing the book and telling the world what we had written: Chris Brand, Jon Darga, Lauren Dong, David Drake, Rachel Rokicki, Annsley Rosner, and Christine Tanigawa.

Outside the Crown kingdom, Jane Fransson has a special place in our hearts for her timely, devoted, and critical assist down the home stretch. We suspect she has lived past lives as an ER doctor, or perhaps as a magician, or maybe as a saint. We saw hints of all of those in her and in her performance as a pinch hitter. Thanks, Jane.

But most credit for this book’s existing at all belongs to our personal guide to the publishing industry: our agent, Alia Hanna Habib. As mentioned above, our initial spurt of interest in writing a history had started to wane, when we published
The Atlantic
article in late 2010. Alia read the article, tracked us down, and, in one forty-minute phone conversation, showed us how and why a history of autism taking off from the life of Donald Triplett could turn into a book she would want to read herself. She had her own ideas for shape and tone, which sounded, frankly, eminently doable, and honest to the historical reality. In short, Alia sold
us
on starting over again. Then she taught us how to write a book proposal. Then she went out and sold the proposal. For the next five years, she kept up our nerve, told us the truth, and was always, always on our side. Truly, she is this book’s godmother. We count that as a blessing.

ABOUT THE AUTHORS

J
OHN
D
ONVAN
is a correspondent for ABC News, and host and moderator of the Intelligence Squared U.S. Debates, which are heard on public radio and by podcast. During his journalism career, in addition to anchoring such broadcasts as ABC’s
Nightline
, John served as chief White House correspondent, and held multiyear postings in London, Moscow, Jerusalem, and Amman, Jordan. He is the winner of three Emmys and the Overseas Press Club Award. He became interested in autism’s impact on families upon meeting his wife, the physician and medical school professor Ranit Mishori, who grew up in Israel with a brother profoundly affected by autism. John also performs as a live storyteller with the group Story District. He has two children and lives in Washington, DC. (Twitter:
@johndonvan
)

C
AREN
Z
UCKER
is a journalist and television producer who has reported on a broad range of subjects both domestically and internationally. As a producer for ABC’s
World News
and
Nightline
, working alongside Peter Jennings, Charlie Gibson, and Diane Sawyer, she covered economic summits, presidential campaigns, social trends, and the Olympic Games. Emmy-nominated, she was honored for her part in ABC’s coverage of 9/11 with two of television’s most prestigious prizes, the Peabody and the Alfred L. DuPont awards. Her oldest son Mickey’s autism diagnosis inspired a new direction in her reporting: to bring a better understanding of autism’s realities. Zucker and her husband, NBC Sports senior producer John McGuinness, have three children and reside in New Jersey. (Twitter:
@caren_zucker
)