by John Donvan
given a life sentence: Ibid.
understood what Alec had been up against: Mary Ellen Nava interview.
“what future does my boy have?”: Nava, “Readers Comments.”
officials from the California Department of Education: Author interview with Mary Ellen Nava. As president of the Santa Barbara Society for Autistic Children, Mary Ellen Nava was interviewed by officials from the California Department of Education. She and Alice Barton were part of the pilot program Dr. Koegel launched for children with autism in response to the death of Dougie Gibson.
“are cooperating on a model program for autistic”: Ursula Vil, “Mother of Slain Autistic Child Describes an Odyssey of Grief,” Los Angeles Times, March 26, 1972.
a model that persisted, evolved, and expanded: Author interview with Robert and Lynn Koegel.
“probably would not have been”: A Minority of One, directed by Mike Gavin, KNBC, original airdate May 11, 1975.
CHAPTER 14: “BEHIND THE WALLS OF THE WORLD’S INDIFFERENCE”
Archie Casto’s parents moved him: Unless otherwise noted, details about Archie Casto’s adult life are from an author interview with Ruth Sullivan and Harriet Casto, “Archie, Autism and Another Time,” ADVOCATE: Autism Society of America Newsletter, Fall 1991.
first eleven children Kanner wrote about: Leo Kanner, Childhood Psychosis: Initial Studies and New Insights (New York: Winston/Wiley, 1973), 161–87.
“in empty hopelessness”: Bernard Rimland, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior (New York: Appleton-Century-Crofts, Educational Division, Meredith Publishing, 1964), 10.
A 1967 British study: Michael Rutter and Linda Lockyer, “A Five to Fifteen Year Follow-up Study of Infantile Psychosis,” British Journal of Psychiatry 113 (1967), 1169–82.
As late as 1982, another British: A. Shah, N. Holmes, and L. Wing, “Prevalence of Autism and Related Conditions in Adults in a Mental Handicap Hospital,” Applied Research in Mental Retardation 3, no. 3 (1982): 303–17.
Home for Incurables: Ed Prichard, “The Huntington State Mental Hospital,” Doors to the Past, January 4, 2008, http://www.rootsweb.ancestry.com/~wvcccfhr/history/hospital.htm.
The 1920 census: United States Federal Census 1920, Census Place: Huntington Ward 7, Cabell, West Virginia; Roll: T625_1951; Page: 1B; Enumeration District: 193; Image: 504, Ancestry.com.
“kicking and beating patients”: “Cruelty to Lunatics: Serious Charges Against a Pennsylvania Asylum,” New York Times, March 31, 1890.
It was a scandal again: “Nurses Tell of Cruelty,” San Bernardino Daily Sun, August 11, 1903.
“relics of the dark ages”: Albert Maisel, “Bedlam,” LIFE, May 6, 1946.
Armentrout snuck into: Charles Armentrout, “Mentally Ill Tots Crying for Love and Attention,” Charleston Gazette, January 31, 1949.
Lena Wentz—was only eleven: Charles Armentrout, “Huntington Hospital Fire Kills 14 Patients,” Charleston Gazette, November 27, 1952.
exposing the appalling treatment: Burton Blatt, “The Tragedy and Hope of Retarded Children,” Look, October 31, 1967.
“It smelled of disease”: Clip from Willowbrook: The Last Great Disgrace, produced by Albert T. Primo (1972), https://www.youtube.com/watch?v=k_sYn8DnlH4.
CHAPTER 15: THE RIGHT TO EDUCATION
“beautiful and well-formed”: Bernard Rimland, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior (Appleton-Century-Crofts, Educational Division, Meredith Publishing, 1964), 80.
“I’m going to have to teach you”: Fred Pelka, What We Have Done: An Oral History of the Disability Rights Movement (Amherst: University of Massachusetts Press, 2012), 136.
“because my brother is retarded”: Ibid., 136.
against keeping Bob in an institution: Author interview with Tom Gilhool.
“Well, these things happen”: Pelka, What We Have Done, 137.
“I can do this”: Ibid., 138.
equal protection under the law: Leopold Lippman and I. Ignacy Goldberg, Right to Education: Anatomy of the Pennsylvania Case and Its Implications for Exceptional Children (New York: Teachers College Press, 1973).
“Your Honors, we surrender”: Gilhool interview.
“an intelligent response”: 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, 11. Text available at http://www.pilcop.org/wp-content/uploads/2012/04/PARC-Consent-Decree.pdf.
“appropriate to his learning capacities”: Thomas K. Gilhool, “The Uses of Litigation: The Right of Retarded Citizens to a Free Public Education,” US Department of Health, Education, and Welfare, 1972, http://mn.gov/mnddc/parallels2/pdf/70s/72/72-CII-USD.pdf.
“placement in a regular public school”: Pennsylvania Association for Retarded Children, 25.
thirty federal court decisions had affirmed: Lippman and Goldberg, Right to Education, 44.
CHAPTER 16: GETTING ON THE BUS
“The Troubled Child”: Matt Clark, “The Troubled Child,” Newsweek, April 8, 1974.
he suddenly tuned out: This and other recollections of life with Shawn Lapin are from an author interview with Connie and Harvey Lapin.
they could and did say, “Go away”: IDEA ensures access to public education for students with disabilities, policies that were not required in all states prior to 1975.
“All the children who come to us”: Harry Nelson, “New Help Seen in the Child Care Practitioner,” Geneva Times, May 10, 1971.
the Lapins sued: Connie and Harvey Lapin dropped their lawsuit in September 1974 after Ronald Reagan signed the Education Bill into law. Further information on the Lapins’ activism can be found on their website, Autism & Activism: http://autismandactivism.com/policy-legislation/ and Harvey and Connie Lapin Collection, Special Collections and Archives, Oviatt Library, California State University, Northridge, http://www.oac.cdlib.org/findaid/ark:/13030/c80p1286/entire_text/.
The NSAC June 1974 newsletter: National Society for Autistic Children, Inc., Newsletter, June 1974.
bill had passed both houses: Author interview with Kimberly Gund.
told his son’s story to Ursula Vils: Ursula Vils, “Lloyd Nolan Recalls Tragedy of Autism,” Los Angeles Times, March 11, 1973.
he narrated a televised documentary on autism: A Minority of One, directed by Mike Gavin, KNBC, original airdate May 11, 1975.
CHAPTER 17: SEEING THE OCEAN FOR THE FIRST TIME
peak for that age group: Gil Eyal, The Autism Matrix (Cambridge, UK: Polity Press, 2010), 101–102.
autism information and referral service: The Autism Services Center was founded by Ruth Sullivan and began in her home in 1979. It is a nonprofit behavioral health center created to provide services in Cagell, Wayne, Lincoln, and Mason counties in West Virginia. Information about the creation of the ASC is from an author interview with Ruth Sullivan.
When Harriet heard that: This and other details about Archie Casto’s adult life are from an author interview with Ruth Sullivan and Harriet Casto, “Archie, Autism and Another Time,” ADVOCATE: Autism Society of America Newsletter, Fall 1991.
home to a Walmart superstore: “Spencer State Hospital,” Kirkbride Buildings, http://www.kirkbridebuildings.com/buildings/spencer/.
CHAPTER 18: THE BEHAVIORIST
got high on it completely by accident: Andy Roberts, Albion Dreaming: A Popular History of LSD in Britain (Singapore: Marshall Cavendish, 2008), 12–14.
in hopes of getting him to talk: A. M. Freedman and E. V. Ebin, “Autistic Schizophrenic Children. An Experiment in the Use of D-Lysergic Acid Diethylamide (LSD-25),” Archives of General Psychiatry 6 (1962): 203–13; the League School was identified as the site of Freedman’s LSD experiment by L. Bender, G. Faretra, and L. Cobrinik, “LSD and UML Treatment of Hospitalized Disturbed Children,” Recen
t Advances in Biological Psychology 5 (1963): 84.
“who had been mute for some years”: As quoted in Freedman and Ebin, “Autistic Schizophrenic Children,” 205.
“since Mr. G. never spoke”: Ibid., 205.
“depressed, but relaxed”: Ibid., 211.
“The hoped-for change”: Ibid., 212.
symptoms that today would fit neatly: L. Bender, L. Goldschmidt, and D. V. Siva Sankar, “Treatment of Autistic Schizophrenic Children with LSD-25 and UML-491,” in Recent Advances in Biological Psychiatry, ed. J. Wortis (New York: Springer, 1962), 170.
“even obtaining parents’ consent”: Bender, Faretra, and Cobrinik, “LSD and UML Treatment of Hospitalized Disturbed Children,” 85.
having experimented on a total of eighty-nine children: L. Bender, “Children’s Reactions to Psychotomimetic Drugs,” in Psychotomimetic Drugs, ed. D. H. Efron (New York: Raven Press, 1970), 265–73.
Similar work was taking place at UCLA: J. Q. Simmons, D. Benor, and D. Daniel, “The Variable Effects of LSD-25 on the Behavior of a Heterogeneous Group of Childhood Schizophrenics,” Behavioral Neuropsychiatry 4, no. 1–2 (1972): 10–16.
“new hope”: Harold A. Abramson, “The Use of LSD-25 in the Therapy of Children (A Brief Review),” Journal of Asthma Research 5 (1967): 139–43.
done anything good at all for children with autism: See for example, E. M. Ornitz, “Childhood Autism: A Review of the Clinical and Experimental Literature,” California Medicine 118 (1973): 21–47; and Simmons, Benor, and Daniel, “Variable Effects,” Behavioral Neuropsychiatry 4, no. 1–2 (1972): 10–16, where Simmons concludes, “Findings cast some doubt on the value of LSD as a therapy in itself or as a therapeutic adjunct.”
used again by a UCLA psychologist: “It is important to note, in view of the moral and ethical arguments which might preclude the use of electric shock, that their future was certain institutionalization. They had been intensively treated in a residential setting by conventional psychiatric techniques for one year prior to the present study without any observable modification in their behaviors. This failure in treatment is consistent with reports of other similar efforts with such children.” From O. Ivar Lovaas, Benson Schaeffer, and James Q. Simmons, “Building Social Behavior in Autistic Children by Use of Electric Shock,” Journal of Experimental Research in Personality 1 (1965): 100.
on a music scholarship: Laura Schreibman, “Memories of Ole Ivar Lovaas, ‘Never, Ever Dull,’ ” Observer (Association for Psychological Science), November 2010, 23.
and had been disappointed: J. Q. Simmons et al., “Modification of Autistic Behavior with LSD-25,” American Journal of Psychiatry 122, no. 11 (1966): 1201–11.
his initial experiments: Lovaas, Schaeffer, and Simmons, “Building Social Behavior,” 99–105.
Mike and Marty: The boys’ first names are paired in a list of names appearing in the dedication to Lovaas’s Teaching Developmentally Disabled Children: The ME Book (Baltimore: University Park Press, 1981), xii.
delivered 1,400 volts: O. Ivar Lovaas and James Q. Simmons, “Manipulation of Self-Destruction in Three Retarded Children,” Journal of Applied Behavior Analysis 2, no. 3 (1969): 143–57.
tried it on himself: Lovaas wrote, “It was definitely painful to the experimenter” (ibid., 149). We have made the assumption that Lovaas, both as lead author on the study and as a matter of principle, would have subjected himself to a taste of the Hot-Shot, and was therefore speaking of himself when he referred to “the experimenter.” Similarly, we assume that Lovaas was referring to himself when he identified “Experimenter 1” as the person who dealt shocks to the boy named John. Again, as lead author, Lovaas would almost certainly have given himself that designation.
“John was effectively freed”: Ibid., 150.
“Male Chauvinist Pig Award”: Schreibman, “Memories of Ole Ivar Lovaas,” 23.
“more brains in this salad”: Paul Chance, “A Conversation with Ivar Lovaas About Self-Mutilating Children and How Their Parents Make It Worse,” Psychology Today, January 1974, 78.
“They are little monsters”: Ibid., 76, 79.
“If I had gotten Hitler here”: Robert Ito, “The Phantom Chaser: For Ivar Lovaas, UCLA’s Controversial Autism Pioneer, a Life’s Work Is Now Facing a Crucial Test,” Los Angeles Magazine, April 2004, 50.
CHAPTER 19: “SCREAMS, SLAPS, AND LOVE”
“far-gone mental cripples”: Dan Moser and photographer Alan Grant, “Screams, Slaps & Love: A Surprising, Shocking Treatment Helps Far-Gone Mental Cripples,” LIFE, May 7, 1965.
Ivan Pavlov, a physiologist: Ivan Pavlov, “Physiology of Digestion,” in Nobel Lectures: Physiology or Medicine 1901–1921 (Singapore: World Scientific, 1999).
“wrapped in darkness”: Ibid., 154.
“between man and brute”: John B. Watson, “Psychology as the Behaviorist Views It,” Psychological Review 101, no. 2 (1994): 248–53. Published from a lecture given at Columbia on February 24, 1913.
with only ninety seconds of conditioning: A demonstration of this feat by Skinner can be seen at https://www.youtube.com/watch?v=TtfQlkGwE2U.
Bijou was contacted: Amber E. Mendres and Michelle A. Frank-Crawford, “A Tribute to Sidney W. Bijou, Pioneer in Behavior Analysis and Child Development: Key Works That Have Transformed Behavior Analysis in Practice,” Behavior Analysis in Practice 2, no. 2 (2009): 4–10; Sidney Bijou, “Reflections on Some Early Events Related to Behavior Analysis of Child Development,” Behavior Analyst 1, no. 19 (1996): 49–60.
The “Dicky study”: M. Risley and T. Mees, “Application of Operant Conditioning Procedures to the Behaviour Problems of an Autistic Child,” Behavior Research and Therapy 1 (1964): 305–12.
CHAPTER 20: THE AVERSION TO AVERSIVES
Lovaas had squeezed everything: O. Ivar Lovaas, Teaching Developmentally Disabled Children: The ME Book (Baltimore: University Park Press, 1981).
returned to the institutions where they lived: O. Ivar Lovaas, Robert Koegel, James Q. Simmons, and Judith Stevens Long, “Generalization and Follow-up Measures on Autistic Children in Behavior Therapy,” Journal of Applied Behavior Analysis 6, no. 1 (1973): 131–66.
“justification for using aversives”: Lovaas, Teaching Developmentally Disabled Children, 16.
The year of its publication: “Resolution on Intrusive Interventions,” reported in Susan Lehr and Robert Lehr, “Why Is My Child Hurting? Positive Approaches to Dealing with Difficult Behaviors. A Monograph for Parents of Children with Disabilities,” 25, http://eric.ed.gov/?id=ED334728.
“perhaps the single most frequently”: As quoted in C. Holden, “What’s Holding Up ‘Aversives’ Report?” Science 249, no. 4972 (1990): 980.
“chewing off both thumbs”: Bernard Rimland, “Aversives for People with Autism,” Autism Research Review International 2, no. 3 (1988): 3.
“couldn’t envision sitting with roses”: “Autistic Child Brings Years of Toil as Loving Parents Strive to Help,” Daily Herald, June 19, 1973.
within days of the helmet: Brian A. Iwata, “The Development and Adoption of Controversial Default Technologies,” Behavior Analyst 11, no. 2 (1988): 149–57.
a position against “aversive techniques”: Eric Schopler and Gary B. Mesibov, eds., Behavioral Issues in Autism (New York: Plenum Press, 1994), 18.
“and ignoring a nuclear holocaust”: Robert S. P. Jones, Challenging Behaviour and Intellectual Disability: A Psychological Perspective (Clevedon, UK: BILD Publications, 1993), 101.
Donnellan likened this paper: Anne Donnellan and Gary LaVigna, “Myths About Punishment,” in Perspectives on the Use of Nonaversive and Aversive Interventions for Persons with Developmental Disabilities, ed. A. C. Repp and N. N. Singh (Belmont, CA: Wadsworth, 1993), 33–57.
“political correctness”: John W. Jacobson, Richard M. Foxx, and James A. Mulick, Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in Professional Practice (New York: CRC Press, 2005), 295.
“would
not deign to provide treatment”: Jacobson et al., Controversial Therapies for Developmental Disabilities, 296.
“Often the happiest people”: Lovaas, Teaching Developmentally Disabled Children, 3.
CHAPTER 21: THE “ANTI-BETTELHEIM”
Eric Schopler stomped into his offices: Many of the details about Eric Schopler were provided in author interviews with Gary Mesibov, Lee Marcus, and Brenda Denzler.
kept bees, chickens: Schopler to E. B. White, February 27, 1977, TEACCH Files, University of North Carolina.
mothers, far from being blamed: Eric Schopler, “Parents of Psychotic Children as Scapegoats,” Journal of Contemporary Psychotherapy 4, no. 1 (1971): 17–22.
“when Eric Schopler was our main defense”: Richard Pollak, The Creation of Doctor B: A Biography of Bruno Bettelheim (New York: Simon & Schuster, 1997), 282.
chief psychiatric social worker: Eric Schopler, “Recollections of My Professional Development,” presentation for the Emma P. Bradley Symposium, “What Future for the Helping Professional,” October 22, 1971.
perfect opening to bring: Schopler related this anecdote in Eric Schopler, “The Anatomy of a Negative Role Model,” in The Undaunted Psychologist: Adventures in Research, ed. Gary Brannigan and Matthew Merrens (Philadelphia: Temple University Press, 1993), 173–86.
“I am only the doctor prescribing”: Schopler, “Anatomy of a Negative Role Model,” 177.
“identifying with the disease!”: Pollak, Creation of Doctor B, 228.
as he was later accused of doing: Pollak, Creation of Doctor B, 198–99, 207–8.
Schopler began work on a doctoral degree: Schopler’s work turned into a published paper, “The Development of Body Image and Symbol Formation Through Bodily Contact with an Autistic Child,” Journal of Child Psychology and Psychiatry 3, no. 3–4 (1962): 191–202.
“Why is it you scientists always try”: Schopler archival interview with Brenda Denzler, Carrboro, North Carolina, in his TEACCH office, December 17, 2001.