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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.