by John Donvan
There is no record: At the time of the writing of this book, Herwig had submitted for publication his paper “Hans Asperger and Nazi Race Hygiene in WW II Vienna” to the Journal of Social History of Medicine.
father of five: V. Lyons and M. Fitzgerald, “Did Hans Asperger (1906–1980) Have Asperger Syndrome?” Journal of Autism and Developmental Disorders 37 (2007): 2020–21.
a medical weekly: Hans Asperger, “Das psychisch abnormale Kind,” Wiener Klinische Wochenschrift 51 (1938): 1314–17. The authors thank Jeremiah Riemer for his assistance in translating all of Asperger’s writings quoted in this book. For the sake of readability, we made occasional modifications to his language, such that the responsibility for the translations is ours alone.
postgraduate thesis: Hans Asperger, “Die ‘Autistischen Psychopathen’ im Kindesalter,” Archiv fur Psychiatrie und Nervenkrankheiten 117 (1944): 76–136.
“malevolent light”: Hans Asperger, “Autistic Psychopathy in Childhood,” in Autism and Asperger Syndrome, ed. Uta Frith (Cambridge, UK: Cambridge University Press, 1991), 79.
he was named a lecturer at: Frith, Autism and Asperger, xii.
published more than three hundred times: Ibid., 208.
continued lecturing past: Feinstein, History of Autism, 18.
Asperger’s name once: Bernard Rimland, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior (Appleton-Century-Crofts, Educational Division, Meredith Publishing, 1964), 54.
“I do not understand”: Letter from Bernard Rimland to Dr. Joshua Lederberg, July 31, 1964, the Joshua Lederberg Papers, National Library of Medicine, http://profiles.nlm.nih.gov/ps/retrieve/ResourceMetadata/BBALQA.
Leo Kanner made a passing: Gil Eyal, The Autism Matrix (Cambridge, UK: Polity Press, 2010), 216.
Krevelen, an early autism researcher: D. Arn Van Krevelen, “Early Infantile Autism and Autistic Psychopathy,” Journal of Autism and Childhood Schizophrenia 1, no. 1 (1971): 82–86.
did not trouble him much: In a talk by Asperger in German in 1977, before the Congress of the Swiss Association of the Parents of Autistic Children, he shrugged off his relative obscurity in the autism world vis-à-vis Leo Kanner with a joke: “Americans don’t read German papers.” In context, it reads as more resigned than resentful. Communication 13, no. 3 (1979): 45–52.
Wing’s husband who first stumbled: “Lorna Wing—Obituary,” Daily Telegraph, June 9, 2014.
Wing published “Asperger’s Syndrome”: Lorna Wing, “Asperger’s Syndrome: A Clinical Account,” Psychological Medicine 11, no. 1 (1981): 115–29.
“the neutral term”: Ibid., 115.
“no clear boundaries”: Lorna Wing, “Past and Future of Research on Asperger Syndrome,” in Asperger Syndrome, ed. Ami Klin, Red R. Volkmar, and Sara S. Sparrow (New York: Guilford Press, 2000).
“Identification of any of the eponymous”: Lorna Wing, “The Relationship Between Asperger’s Syndrome and Kanner’s Syndrome,” in Frith, Autism and Asperger, 116.
“who often cannot believe”: Ibid.
“Asperger, despite listing numerous”: Lorna Wing, “Reflections on Opening Pandora’s Box.” Journal of Autism and Developmental Disorders 35, no. 2 (2005): 198. The scene of Lorna Wing and Hans Asperger meeting is also recounted in Adam Feinstein’s The History of Autism.
“We cordially agreed to differ”: Ibid.
a 1968 paper: Hans Asperger, “Zur Differentialdiagnose des Kindlichen Autismus,” Acta Paedopsychiatrica 35 (1968): 136–45.
“complete agreement in some”: Hans Asperger, “Problems of Infantile Autism (A Talk),” Communication (1979): 45–52.
“psychotic or near psychotic state”: Ibid.
“Asperger’s typical cases”: It is not clear whether Asperger used the third person in this instance or whether that was a translator’s choice. The original German was not available to the authors.
CHAPTER 32: THE SIGNATURE
Was Hans Asperger, as a young man: The account of the Wing-Volkmar conversation in this chapter is from an author interview with Fred Volkmar. It represents Volkmar’s best recollection of the call, with a high degree of confidence in its accuracy, but should not be regarded as excerpts from a strict verbatim transcript of the phone call, which does not exist.
a research request for volunteers: Ami Klin, Fred R. Volkmar, and Sara S. Sparrow, Asperger Syndrome (New York: Guilford Press, 2000), 2.
“The seeds for our current syndrome”: Eric Schopler, “Premature Popularization of Asperger Syndrome,” in Asperger Syndrome or High-Functioning Autism?, ed. Eric Schopler, Gary B. Mesibov, and Linda J. Kunce (New York: Plenum Press, 1998), 386.
guilt by association: Account of Schopler’s suspicions of Asperger corroborated in author interview with Gary Mesibov, Schopler’s longtime collaborator at TEACCH.
“longstanding interest”: Eric Schopler, “Ask the Editor: Are Autism and Asperger Syndrome Different Labels or Different Disabilities,” Journal of Autism and Developmental Disorders 26, no. 1 (1996): 109.
Volkmar, for example, did not hear: Details of the conversation between Fred Volkmar and Lorna Wing are from author interview with Fred Volkmar.
As a psychology PhD: Ami Klin, “Young Autistic Children’s Listening Preferences in Regard to Speech: A Possible Characterization of the Symptom of Social Withdrawal,” Journal of Autism and Developmental Disorders 21, no. 1 (1991): 29–42.
The question the two men: Account of Cohen-Klin conversations from author interview with Ami Klin.
“If you are going to kill”: As quoted by D. Konziella, “Thirty Neurological Eponyms Associated with the Nazi Era,” European Neurology 62 (2009): 56–64.
“Hans Asperger, a Nazi?”: Author interview with Fred Volkmar.
“We would like to be able”: The details of Ami Klin’s correspondence with Michael Hubenstorf come from author interviews with Klin and letters he shared with the authors.
she wrote that her father had been at odds: Maria Asperger, foreword to Asperger Syndrome, Klin et al., xiii.
“Far from despising”: Hans Asperger, “Autistic Psychopathy in Childhood” in Autism and Asperger Syndrome, ed. Uta Frith (Cambridge, UK: Cambridge University Press, 1991), 37–92.
“humanity and his courageous”: Brita Schirmer, “Autismus und NS-Rassengesetze in Österreich 1938: Hans Aspergers Verteidigung der ‘Autistischen Psychopathen’ gegen die NS-Eugenik,” Die neue Sonderschule 47, no. 6 (2002): 460–64.
“tried to protect these”: Viktoria Lyons and Michael Fitzgerald, “Did Hans Asperger (1906–1980) Have Asperger Syndrome?” Journal of Autism and Developmental Disorders 37 (2007), 2020–21.
“The very opposite is more likely”: Feinstein, History of Autism, 15. Hans Asperger’s diary is cited in Maria Feldner Asperger, Zum Sehen geboren, zum Schauen bestellt.
“An entire nation goes in a single”: Hans Asperger, diary, 1934, in Maria Asperger Feldner, Zum Sehen Geboren, zum Schauen Bestellt.
His Catholic faith: Steve Silberman, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (New York: Avery, 2015), 121.
Allies’ “denazification” policy: The phenomenon of Nazi Party members trying to rewrite their pasts during the denazification period is well illustrated in a case history by Herwig Czech and Lawrence A. Zeidman, “Walther Birkmayer, Co-describer of LDopa, and His Nazi Connections: Victim or Perpetrator?,” Journal of the History of the Neurosciences: Basic and Clinical Perspectives (April 3, 2014): 19.
a persilschein, or “Persil certificate”: Ernst Klee, Persilscheine und falsche Passe. Wie die Kirchen den Nazis halfen (“Persil Certificates and False Passports: How the Church Aided the Nazis”) (Frankfurt, Germany: Fischer Taschenbuch-Verlag, 1991).
in a 1962 talk: Excerpts from both Hans Asperger’s 1962 talk and his 1974 radio appearance are from Hans Asperger, “Ecce Infans. Zur Ganzheitsproblematik in der modernen Pädiatrie,” Wiener Antrittsvorlesung, 1962, in Wiener klinische Wochenschrift 74, 936–41. A
ustrian historian Herwig Czech discovered and shared this material with the authors.
While ardently pro-Catholic: John Connelly, From Enemy to Brother: The Revolution in Catholic Teaching on the Jews, 1933–1965 (Cambridge: Harvard University Press, 2012).
“excessive Jewish influence”: An example of Bund Neuland’s political and philosophical leanings can be found in L.Z., “Die Juden Wiens,” 1935, in Neuland. Blätter jungkatholischer Erneuerungsbewegung, 19–21. This information was shared with the authors by Herwig Czech.
“We stand in the midst”: Hans Asperger, “Das Psychisch Abnorme Kind” Wiener Klinische Wochenschrift (1938): 1314–17.
A review of other medical talks: A review of the talks and other journals and papers was shared with the authors by Herwig Czech.
“deft chess move”: Brita Schirmer, “Autismus und NS-Rassengesetze in Österreich 1938: Hans Aspergers Verteidigung der ‘Autistischen Psychopathen’ gegen die NS-Eugenik,” Die neue Sonderschule 47, no. 6 (2002): 460–64.
what he called “social worth”: Hans Asperger, “Die ‘Autistischen Psychopathen’ im Kindersalter,” Archiv fur Psychiatrie und Nervenkrankheiten 117 (1944): 76–136; ibid.
That turns out to be a myth: Swedish psychologist Chris Gillberg, who popularized the term “Little Professors” in a widely read 1991 book, confirmed to the authors in 2015 that he coined it himself, to capture the essence of the boys Asperger studied. Although historian Herwig Czech notes that Asperger described one child’s manner of speaking as “professorial” in a 1939 paper, the phrase “Little Professors,” frequently attributed to Asperger, cannot be found anywhere in his writings.
“thought it more rewarding”: Hans Asperger, “Das Psychisch Abnorme Kind.”
autistic traits were more often a detriment: In Asperger’s 1944 paper, “Die ‘Autistischen Psychopathen’ im Kindersalter,” page 118, he wrote: “Leider überwiegt nicht in allen, nicht einmal in den meisten Fällen das Positive, Zukunftweisende der autistischen Wesenszüge.” The translation: “Unfortunately, the things that are positive and promising [more literally, ‘forward-looking’] about autistic traits are not their overriding features in all cases, and not even in most.”
“pronounced intellectual inferiority”: Ibid
“When at home, this child must”: Based on documents shared with the authors by Herwig Czech. See also Herwig Czech, “ ‘The Child Must Be an Unbearable Burden to Her Mother’: Hans Asperger, National Socialism, and ‘Race Hygiene’ in World War II Vienna,” unpublished paper submitted in 2015 to Molecular Autism.
“conforms to the principles of the policy of racial hygiene”: Ibid.
“his Nazi credibility”: Ibid.
the director of the clinic: Author interview with Arnold Pollak.
CHAPTER 33: THE DREAM OF LANGUAGE
the civil rights of people with disabilities: Unless otherwise noted, this and other details about Chris Borthwick and Douglas Biklen are from an author interview with Biklen and a letter from Borthwick to Biklen, April 15, 1987, provided to the authors by Biklen.
Biklen was well-known: Steven J. Taylor and Douglas Biklen, Understanding the Law: An Advocates Guide to the Law and Developmental Disabilities (Syracuse, NY: Human Policy Press, 1980); author interview with Douglas Biklen.
The inherent merit of his agrument: Biklen interview.
Rosemary Crossley was a celebrity: Rosemary Crossley and Anne McDonald, Annie’s Coming Out (Melbourne: Deal Books, Penguin Books Australia, 1980).
“Excuse me. Get Mommy”: Douglas Biklen, “Communication Unbound: Autism and Praxis,” Harvard Educational Review 60, no. 3 (1990).
“What really does integration”: Ibid.
“installed a ‘talking typewriter’ ”: Irene Mozolewski, “Dr. Goodwin to Be Seen on British TV,” Oneonta Star, June 7, 1966.
“learning…a successful, enjoyable”: Barbara A. Sanderson and Daniel W. Kratchvil, “The Edison Responsive Environment Learning System or the Talking Typewriter Developed by Thomas A. Edison Laboratory, a Subsidiary of McGraw Edison Company,” American Institutes for Research in the Behavioral Sciences, Palo Alto, California, January 1972.
likely seen in ads: Shirley Cohen, Targeting Autism: What We Know, Don’t Know, and Can Do to Help Young Children with Autism Spectrum Disorders (Berkeley: University of California Press, 2006): 168–69.
Also in the 1960s: Rosalind Oppenheim, “They Said Our Child Was Hopeless,” Saturday Evening Post, June 17, 1961.
Simple and effective: Developed by Andrew S. Bondy, PhD, and Lori Frost, MS, CCC/SLP, 1985 Picture Exchange Communication System, PECS Pyramid Educational Consultants, Inc., http://www.pecsusa.com/pecs.php; Jennifer B. Ganz, Richard L. Simpson, and Emily M. Lund, “The Picture Exchange Communication System (PECS): A Promising Method for Improving Communication Skills of Learners with Autism Spectrum Disorders,” Education and Training in Autism and Developmental Disabilities 47, no. 2 (2012): 176–86.
“Tell my mother”: Letter to the editor by Jacqueline J. Kingon and Alfred H. Kingon, “The Words They Can’t Say,” New York Times Magazine, November 3, 1991.
workshops were being offered: Daniel Gonzales, “Critics Call It a Hoax but 100 Teachers Soon Will Gather to Learn More,” Syracuse Herald-Journal, February 22, 1994.
“Knowledge of augmentative”: “Special Education Teacher Vacancies,” Syracuse-Herald Journal, Cayuga-Onondaga BOCES, July 20, 1991.
CHAPTER 34: THE CHILD WITHIN
Janyce Boynton blamed herself: Unless otherwise noted, details about Janyce Boynton’s facilitated communication experience are from an author interview with Boynton and from Janyce Boynton, “Facilitated Communication—What Harm It Can Do: Confessions of a Former Facilitator,” Evidence-Based Communication Assessment and Intervention 6, no. 1 (2012): 3–13.
typed out, “t-h-e-s-o-n-o-f-a-b-i-t-c-h”: Betsy’s FC responses as reported throughout this chapter are from papers shared with the authors by Phil Worden, who acted as guardian ad litem for Betsy and Jamie Wheaton. Worden collected all files, papers, and written communications applicable to the Validity Testing on Facilitated Communications for Fifth District Court & Maine Dept. of Human Services, January 1993.
“all [were] unquestionably endowed”: Leo Kanner, “Autistic Disturbances of Affective Contact,” Nervous Child 2 (1943): 247.
“Last night, I dreamed”: “What I Imagine He Sounds Like,” Short Bus Diaries, September 26, 2012, http://shortbusdiaries.com/what-i-imagine-he-sounds-like/.
rid the body of evil spirits: Author interviews with traditional and faith healers in South Africa.
Parents signed up for “holding therapy”: Jan Mason, “Child of Silence: Retrieved from the Shadow World of Autism: Katy Finds Her Voice,” LIFE, September 15, 1987.
parents tried “packing therapy”: L. Spinney, “Therapy for Autistic Children Causes Outcry in France,” Lancet 370 (2007): 645–46.
had drastically improved: Author interview with Victoria Beck.
shot up as high as $8,000: Laura Johannes, “New Hampshire Mother Overrode Doubts on New Use of Old Drug,” Wall Street Journal, March 10, 1999.
These cases, nearly all: Lawrence Wright, “Child-Care Demons,” New Yorker, October 3, 1994.
She looked at her and said, simply, “Hi”: Transcription of interview with police, DHS investigator, and all other relevant documents pertaining to proceedings of FC testing provided to authors by Phil Worden.
they waived their right to an attorney: Author interview with Suzette and Jim Wheaton.
Boynton also impressed him as honest: This and other recollections of interactions between Phil Worden and Janyce Boynton are from author interviews with Worden and Boynton.
Soon he was on the phone with Rimland: Worden interview.
he believed in technology, not FC: Author interview with Howard Shane.
“That student is lucky to have you in her life”: Author interview with Boynton.
reenacted, nearly verbatim, the exp
eriment: “Prisoners of Silence,” Frontline, produced by John Palfreman, PBS, October 19, 1993, transcript available at http://www.pbs.org/wgbh/pages/frontline/programs/transcripts/1202.html.
“is not the same as having nothing to say”: Nancy Shulins, “Debate Over Autism Communication Rages On,” Chicago Daily Herald, May 16, 1994.
“the controversy about facilitated communication”: Chancellor Nancy Cantor, “Imagining America; Imagining Universities: Who and What?” welcome address for the Imagining America Annual Conference at Syracuse University, September 7, 2007, http://www.syr.edu/chancellor/speeches/ImaginingAmericaAnnualConferenceRemarks090707.pdf.
Betsy’s younger brother, Jamie, committed suicide: Bill Trotter, “Deaths Motive Unknown; Recently Wed Woman Stabbed, Man Shot on Swans Island,” Bangor Daily News, July 24, 2001, http://archive.bangordailynews.com/2001/07/24/deaths-motive-unknown-recently-wed-woman-stabbed-man-shot-on-swans-island.
Julian and Tal Wendrow, Aislinn’s parents: Author interviews with Tal and Julian Wendrow.
he was forced to abandon: Julian Wendrow interview.
CHAPTER 35: AN ELUSIVE DEFINITION
“It forced me to redefine autism”: Douglas Biklen, “Communication Unbound: Autism and Praxis,” Harvard Educational Review 60, no. 3 (1990): 291–315.
“the received knowledge”: Robert Cummins and Margot Prior, “Further Comment: Autism and Assisted Communication: A Response to Biklen,” Harvard Educational Review 62, no. 2 (1992): 228–42.
an “ideologue”: Eric Schopler, in “Editor’s Note” to Margot Prior and Robert Cummins, “Questions About Facilitated Communication and Autism,” Journal of Autism and Developmental Disorders 22, no. 3 (1992): 331.
“hopelessly confused state”: Michael Rutter, “Concepts of Autism: A Review of Research,” Journal of Child Psychology and Psychiatry 9, no. 1 (1968).
“because criteria for diagnosis are different”: Eric Schopler, “On Confusion in the Diagnosis of Autism,” Journal of Autism and Childhood Schizophrenia 8, no. 2 (1978): 137–38.