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In a Different Key

Page 73

by John Donvan


  Autism Speaks. “Autism Speaks Withdraws Support for Strategic Plan for Autism Research, Decries Unexpected Change in Final Approval Process.” Press release. January 15, 2009, https://www​.autismspeaks.org​/about-us​/press-releases​/autism-speaks​-withdraws-support​-strategic-plan​-autism-research​-decries-unexp.

  ———. “Autism Speaks Demands an Urgent, New Response to the Autism Epidemic as CDC Updates Prevalence Estimates.” Press release. March 29, 2012, https://​www.autismspeaks​.org/about​-us/press​-releases/cdc​-autism​-prevalence​-1​-88​-autism​-speaks​-demands​-response.

  Burton, Dan. “Press Statement.” Address, from Congressional Record, V. 148, Pt. 17, November 15, 2002, to December 16, 2002.

  California Criminal Court. The People of the State of California, Plaintiff, v. Alexander Gibson, Defendant. Original Reporter’s Transcript of Grand Jury Proceedings, Original Clerk’s Transcript, January 12, 1971.

  California Department of Developmental Services. “Changes in the Population of Persons with Autism and Pervasive Developmental Disorders in California’s Developmental Services System: 1987 through 1998, Report to the Legislature.” March 1, 1999, available at http://​www.dds​.ca.gov​/Autism/docs​/autism_report_1999​.pdf.

  Cantor, Nancy. “Imagining America; Imagining Universities: Who and What?” Chancellor’s welcome address for the Imagining America Annual Conference at Syracuse University, September 7, 2007.

  Centers for Disease Control and Prevention. “Prevalence of the Autism Spectrum Disorders (ASDs) in Multiple Areas of the United States, 2000 and 2002,” http:​//stacks.cdc​.gov/view​/cdc/6864.

  ———. Morbidity and Mortality Weekly Report, March 28, 2014, http://www​.cdc.gov​/mmwr/pdf​/ss​/ss6302​.pdf.

  Combating Autism Act of 2006.

  Court of Appeals of California, Second Appellate District, Division Two. Ruling, People v. Gibson, 23 Cal.App.3d 918, March 1, 1972.

  Cure Autism Now. “Cure Autism Now Calls for Removal of Mercury-Based Preservative in Children’s Vaccinations.” PR Newswire, July 17, 2001.

  Deer, Brian. “Amended Declaration of Brian Deer in Support of Defendants’ Anti-SLAPP Motion to Dismiss.” July 9, 2012, http://​briandeer.com​/solved/slapp​-amended​-declaration​.pdf.

  Despert, Louise. Letter to Leo Kanner, July 12, 1942. American Psychiatric Association collection, American Psychiatric Association.

  General Medical Council. “GMC Fitness to Practice Hearing for Andrew Wakefield,” http://​wakefieldgmctranscripts​.blogspot​.com​/2012​/02​/day​-17.html.

  Grant, Moosa V. P. “The President Reports,” National Society for Autistic Children, Inc., Newsletter, Summer 1968.

  Handley, J. B. “Paul Offit and the ‘Original Sin’ of Autism.” Age of Autism (website). January 31, 2011, http:​//www.ageofautism​.com​/2011​/01​/paul​-offit​-and​-the​-original​-sin​-of​-autism​.html.

  Immunization Safety Review Committee. Immunization Safety Review: Vaccines and Autism. Washington, DC: National Academies Press, 2004.

  Kanner, Leo. Address given as recipient of Stanley R. Dean Research Award by the American Psychiatric Association, May 4, 1965, available at http://​neurodiversity​.com​/library_kanner_1965​.pdf.

  ———. Speech to National Society, Washington, DC, July 17, 1969. Transcription available at American Psychiatric Association Collection, American Psychiatric Association.

  Kansas Bureau of Child Research. Fitter Families for Future Firesides: A Report of the Eugenics Department of the Kansas Free Fair, 1920–1924. Eugenics Committee of the United States of America, 1924.

  Lovaas, O. I. “Special Report: Dr. Lovaas Comments on the Mistaking of His Work.” FEAT Newsletter, 2000. “Clarifying Comments on the UCLA Young Autism Project.”

  McCravey, William. Letter to his grandson, Donald Triplett. June 22, 1943, provided to the authors by Oliver Triplett.

  McIlwain, Lori. “Autism & Wandering: A Guide for Educators.” National Autism Association, April 20, 2015, http://​nationalautismassociation​.org​/autism​-wandering​-a​-guide​-for​-educators/.

  National Institutes of Health. Mental Health: A Report of the Surgeon General. Rockville, MD: US Department of Health and Human Services, 1999, available at http:​//profiles​.nlm​.nih​.gov​/ps​/access​/NNBBHS.pdf.

  National Society for Autistic Children, Inc., Newsletter, June 1974. Archives of the Autism Society of America, Bethesda, Maryland.

  New York State Department of Health. “Quick Reference Guide for Parents and Professionals: Autism/Pervasive Developmental Disorders,” 1999, available at http://​www​.health​.ny​.gov​/​publications​/4216.pdf.

  Pace, Giacinta. “Philanthropist Wages Fight to Cure Autism, Suzanne Wright’s Foundation Raises Money to Fund Research on Disorder.” NBC News, November 12, 2009, www.​nbcnews​.com​/id​/33868343​/ns​/us_news​-giving​/t​/philanthropist​-wages​-fight​-cure​-autism​/​#.VZ1HY_kgkqM.

  Patches, Matt. “Remembering Rain Man: The $350 Million Movie That Hollywood Wouldn’t Touch Today.” Grantland, January 9, 2014, http://​grantland​.com​/hollywood-prospectus​/remembering-rain​-man-the​-350-million​-movie-that​-hollywood-wouldnt​-touch​-today/.

  Pavlov, Ivan. Nobel Lecture: “Physiology of Digestion.” December 12, 1904.

  The People of the State of California, Plaintiff, v. Alexander Gibson, Defendant, Original Reporter’s Transcript of Grand Jury Proceedings, January 12, 1971, Superior Court of the State of California for the County of Santa Barbara.

  “Ransom Notes and Love Letters.” Mom—Not Otherwise Specified (blog). December 10, 2007, http://​momnos.blogspot​.com/2007​/12/ransom​-notes-and​-love-letters​.html.

  Reichler, Robert. Talk on “Early History of TEACCH.” Winter InService, Division TEACCH, Chapel Hill, February 8, 2007.

  SafeMinds. “SAFEMINDS Outraged That IOM Report Fails American Public.” Press release. SafeMinds, May 18, 2004, http://​www.safeminds​.org/wp​-content/uploads​/2004/05​/040518-PR10​-BadIOMReport.pdf.

  Schopler, Eric. Audio Interview with Gary Mesibov: Reminscences, June 18, 1988.

  ———. “Recollections of My Professional Development.” Lecture, from “What Future for the Helping Professional?” Emma P. Bradley Symposium, October 22, 1971.

  Seidel, Kathleen. “Autism and Lupron: Playing with Fire.” Neurodiversity.com, February 19, 2006, http://web.archive.org/web/20120204153600/http:​//neurodiversity.com​/weblog/article​/83/autism​-testosterone-lupron​-playing-with​-fire.

  Sharp, Beverly. “Autism and Discrimination in British Columbia.” Address to BC-NDP Women’s Rights Committee. December 8, 1997.

  Sinclair, Jim. “Don’t Mourn for Us.” Web post. November 3, 1993, http://​www.autreat​.com/dont_mourn​.html..

  “Statement from NAA Board Member Katie Wright Reported June 15, 2007.” Adventures in Autism (blog). June 15, 2007, http://​adventuresinautism.blogspot​.com/2007​/06/statement​-on-autism​-speaks-from​-katie​.html.

  The Pennsylvania Association for Retarded Children Et Al., Plaintiffs, v. Commonwealth of Pennsylvania Et Al., Defendants, US District Court, E.D. of Pennsylvania. May 5, 1972.

  Treffert, Darald. “Rain Man, the Movie / Rain Man, Real Life.” Wisconsin Medical Society, n.d., https://www.​wisconsinmedicalsociety​.org/.

  United States Federal Census 1920. Census Place: Huntington Ward 7, Cabell, West Virginia; Roll: T625_1951; Page: 1B; Enumeration District: 193; Image: 504.

  US Court of Federal Claims. “Claims for Vaccine Injuries Resulting in Autism Spectrum Disorder or Similar Neurodevelopmental Disorder, Autism-Update (Circular).” May 24, 2007, http://​www.uscfc​.uscourts.gov​/sites/default​/files/opinions​/SWEENEY​.Snyder081109a_0​.pdf.

  ———. “Transcript of Proceedings. June 11, 2007: Theresa Cedillo and Michael Cedillo v. Secretary of Health and Human Services,” http://www.​autism-w
atch​.org/omnibus​/cedillo2​.pdf.

  ———. “Vaccine Program Background.” Office of the Special Masters, the Autism Proceedings, 2010, www.​uscfc.uscourts​.gov/sites​/default/files​/vaccine_files/vaccine​.background​.2010.pdf.

  US Department of Health and Human Services. “HHS Secretary Leavitt Announces Members of the New Interagency Autism Coordinating Committee.” News release. November 27, 2007, https://​iacc​.hhs​.gov​/news/.

  US House of Representatives. “Autism: Present Challenges, Future Needs—Why the Increased Rates?” Hearing Before the Committee on Government Reform, 106th Congress, Second Session, April 6, 2000.

  ———. “Mercury in Medicine—Are We Taking Unnecessary Risks?” Hearing Before the Committee on Government Reform, 106th Congress, Second Session, July 18, 2000.

  US Public Health Service. Statement by PHS in “Notice to Readers: Thimerosal in Vaccines: A Joint Statement of the American Academy of Pediatrics and the Public Health Service.” Centers for Disease Control, Morbidity and Mortality Weekly Report 48, no. 26 (July 9, 1999): 563–65.

  US Senate. “Thimerosal and Autism Spectrum Disorders: Alleged Misconduct by Government Agencies and Private Entities.” Executive summary for the Committee on Health, Education, Labor and Pensions, September 2007.

  Wright, Bob, and Suzanne Wright. “Statement…from Co-Founders.” Autism Speaks. 2007, web.​archive.org​/web/20071021232618​/http​://www​.autismspeaks​.org​/wrights_statement​.php.

  A NOTE FROM THE AUTHORS

  With extremely few exceptions, the facts and events described in these pages originate in eyewitness accounts, confirming documents, and reliable third-party recollections. Such accounts were provided by individuals whom we interviewed directly or came to know through their writings or other evidence of their deeds, words, and thoughts. This documentary evidence includes books, journal articles, private correspondence, audio and video recordings, newspaper and magazine accounts, blog posts, text messages, medical records, oral and written tributes, transcripts of legal proceedings, and maps. As a rule, our sources are specified either in the text itself or in an endnote.

  The exceptions concern some of the earliest interactions between Donald Triplett and his mother, Mary. Donald has little to share in the way of specific memories of those interactions, and only Mary knew what she was thinking and feeling during Donald’s childhood, and she died in 1985. In her absence, we have imagined only a handful of details, all firmly rooted in what we do know about their circumstances. As one example: on the day she saw Donald do well in school—documented in a letter—we take it for granted that Mary was moved and excited, and we have stated as much. For another: we visited the Triplett family home and noticed a relatively busy street in proximity to the house; based on that, we have assumed that Mary was concerned about Donald’s running into traffic. For a third: we used our experience of autism in general, and our knowledge of Donald’s documented behaviors, to depict Mary as worried about Donald figuring out how to open the locks on windows. Elsewhere in the book, we have added minor narrative details only if we judged them to be highly plausible based on the totality of our research and interviews. For example, when we describe Donald’s first driving lesson, we say that he has both hands high on the wheel at the start of it. This seems to us extremely likely, especially since, to this day, Donald has a distinctive way of gripping the wheel with both hands.

  In three cases, we have avoided fully naming individuals in order to protect their privacy. In one case, we use no name at all; in a second, we use a first name only. The third case is that of a young woman who appears, at her own request, as “Junie Gibson.” Junie derives from a childhood nickname.

  Regarding names in general, we have chosen to use first names when referring to children and their parents, and last names for professionals such as scientists and educators. However, we found it difficult to apply our own rule consistently, since during the course of the narrative some parents become “professionalized,” and some professionals become personally engaged with families. Therefore, some individuals appear by their first names sometimes and their last names at other times, according to the context.

  Finally, we have occasionally used words that today are considered deeply offensive, such as “mentally retarded,” “idiot,” “feebleminded,” and so forth. We want to make clear that we mean no offense and have used them only in a historical context, as used by professionals in another era. In their day, many of these words were clinical terms, used by professionals who sought only to be precise and intended no malice. That said, we have made efforts to minimize such usages, and to employ the terms commonly accepted today wherever context allows. Likewise, we almost always use the “people first” formulation when describing an individual with a disability. Thus, we usually write of “a boy with autism” rather than “an autistic boy.” We have reversed this, however, when writing about individuals or groups that prefer the latter, such as many of those in the neurodiversity movement.

  ACKNOWLEDGMENTS

  Our list of those owed our deepest thanks for getting this book written starts where most authors conclude theirs: with our families, whose connection to autism is neither casual nor abstract. In the case of Caren’s family, that connection comes through her oldest child, Michael “Mickey” McGuinness, who was diagnosed with autism in 1996. On John’s end, it is his wife’s brother, Dror Mishori, born in Israel in 1967, who is profoundly affected.

  Mickey and Dror. Right there, those are two fine teachers of what the “autism experience” is about. But autism makes experts of family members too, and so, among other true authorities we want to acknowledge, first we thank these: John McGuinness, Mickey’s dad and Caren’s husband; and Jonah and Molly McGuinness, Mickey’s brother and sister. His uncle, Michael Zucker, Caren’s brother, belongs here too along with his aunt, Alison Porter.

  Also Dror’s family in the United States: his sister, Ranit Mishori, John’s wife; their children, Ben and Noa Donvan, who are Dror’s nephew and niece; his parents at home in Israel, Edna and Yaacov Mishori; and his younger sister, Osnat Weinstein.

  We are indebted to these several near relatives, for permitting our subject to crowd their already crowded lives, for putting up with absences during travel undertaken for research, and for not always asking to change the subject, when we perhaps brought home more “autism talk” than everyone else in the house, already well versed in the topic, necessarily needed to hear. Their forbearance, and humor, made the long journey a lot more pleasant.

  Caren also thanks the wider unofficial family of soulmates whose support over her first twenty years as an “autism mom” showed her the power of love and laughter in getting through almost anything. Most of these happen to be fellow mothers: Cheryll Brocco, Katy Barrett, Janet Boyle, Barbara Friedman, Julie Hartenstein, Ilene Lainer, Debbie Lankowsky, Kate O’Brian, Beth Sovern, and Betsy Stark. Liz Daibes and her family taught Caren a lesson in zen before she knew what the word meant, and showed the Zucker-McGuinness household a little sampling of Forest, Mississippi, in Bergen County, New Jersey.

  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 Alexand
ra 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.

 

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