In a Different Key: The Story of Autism (83 page)

“For here we seem”:
Leo Kanner, “Autistic Disturbances of Affective Contact,”
Nervous Child
2 (1943): 250.

“almost word-for-word”:
Letter from Louise Despert to Leo Kanner, July 12, 1942, American Psychiatric Association Archives, Arlington, Virginia.

“When Kanner coined”:
Leon Eisenberg, “The Past 50 Years of Child and Adolescent Psychiatry: A Personal Memoir,”
Journal of the American Academy of Child and Adolescent Psychiatry
40, no. 7 (July 2001): 743–48.

“the state of affairs changed abruptly”:
Leo Kanner, speech given as recipient of the Stanley R. Dean Research Award by the American Psychiatric Association in New York on May 4, 1965. Available at
http://neurodiversity.com/library_kanner_1965.pdf
.

Some fifty-two articles:
Leo Kanner, “Infantile Autism and the Schizophrenias,”
Behavioral Science
4 (1965): 412–20.

“I need not mention”:
Leo Kanner, speech given at the annual National Society for Autism Meeting, Washington, DC, July 17, 1969. A transcription is available from the American Psychiatric Association.

moment as “thrilling”:
Author interview with Ruth Sullivan.

a guest on Dick Cavett’s show:
Dick Cavett interview with Bruno Bettelheim,
The Dick Cavett Show
, ABC, original airdate June 2, 1971.

CHAPTER 10: BITING HER TONGUE

It was winter 1964:
The story of Audrey and Melissa Flack, and the events that took place at Lenox Hill Hospital, were told in author interviews with Audrey Flack.

The term used by the team was
psychogenic factors:
Unless otherwise noted, all information about this study is from Katharine F. Woodward, Norma Jaffe, and Dorothy Brown, “Psychiatric Program for Very Young Retarded Children,”
American Journal of Diseases for Children
108 (1964): 221–29.

“any organic basis”:
Ibid.

mandatory “casework treatment”:
Ibid.

In 1978, her painting of Anwar:
“Anwar Sadat, Man of the Year,”
Time
, January 2, 1978.

“Doctor, do you think”:
Audrey Flack,
Audrey Flack, Art and Other Miracles
, unpublished manuscript shared with the authors by Audrey Flack.

“renowned figure in”:
James Warren, “Another Opinion: Chicago Adds to Doubts Raised About Bettelheim’s Methods, Personality,”
Chicago Tribune
, July 25, 1991; Shari Roan, “A Quiet Advocate for the Child: Psychology: The Late Bruno Bettelheim Rewrote the Code of Treatment for Emotionally Disturbed Children,”
Los Angeles Times
, March 16, 1990.

“The point of view”:
Daniel Goleman, “Bruno Bettelheim Dies at 86—Psychoanalyst of Vast Impact,”
New York Times
, March 14, 1990.

CHAPTER 11: MOTHERS-IN-ARMS

Ruth Sullivan had no patience:
Author interview with Ruth Sullivan.

“He will always be a little odd”:
Ibid.

“ready for school”:
John Machacek, “No School for Bright Boy Suffering from Autism,”
Knickerbocker News
, February 22, 1966.

she would write up a set of guidelines:
Ruth Sullivan, “Parents As Trainers of Legislators, Other Parents, and Researchers,” in
The Effects of Autism on the Family
, ed. Eric Schopler and Gary Mesibov (New York: Plenum Press, 1984).

“poignant beauty”:
Ibid., 235.

“one of the most sensitive”:
Ibid.

“reading reports, budgets, studies”:
Ibid., 237.

families in Suffolk County:
In the United States, the first schools parents started on their own were: the May Institute, originally called the Parents’ School for Atypical Children, started by Jacques and Marie May in 1955 on Cape Cod; the Developmental Disabilities Institute, originally called the Suffolk Center for Emotionally Disturbed Children, in Suffolk County, Massachusetts; and the Center for Developmental Disabilities, originally called the Nassau Center for Emotionally Disturbed Children, in Woodbury, New York. See
http://198.173.67.27/dramatic_progress_in_the_past.htm
.

CHAPTER 12: THE AGITATOR

he was famously happy:
Author interview with Jon Panghorn.

Bernie’s own parents were:
This and other details of Bernard Rimland’s life are from an author interview with Gloria Rimland, his wife, and Stephen Edelson.

“a perfectly normal-looking infant”:
Autism: Present Challenges, Future Needs—Why the Increased Rates? Hearing Before the House Committee on Government Reform
, 106th Congress, statement by Bernard Rimland, PhD, Autism Research Institute, 2000.

“Only Churchill comes to mind”:
Letter from Bernard Rimland, PhD, to Leo Kanner, MD, c. 1960, American Psychiatric Association Archives.

encouraged Rimland to keep going:
Letter from Bernard Rimland, PhD, to Leo Kanner, MD, c. 1960, American Psychiatric Association Archives.

Rimland’s first letter to Bettelheim:
Letter from Bernard Rimland to Bruno Bettelheim, March 22, 1965, Bettelheim papers, University of Chicago.

“I…shall give you no help”:
Letter from Bruno Bettelheim to Bernard Rimland, March 25, 1965, Bettelheim papers, University of Chicago.

“any reprints, reports or references”:
Letter from Bernard Rimland to Bruno Bettelheim, April 5, 1966, Bettelheim papers, University of Chicago.

“You see, feelings are”:
Letter from Bruno Bettelheim to Bernard Rimland, March 25, 1965, Bettelheim papers, University of Chicago.

“father of autism”:
Leo Kanner, foreword in 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), 21.

parents were actually stealing:
Edelson interview.

a “diagnostic checklist”:
Rimland,
Infantile Autism
, 278.

calling his Baltimore clinic:
Leo Kanner, “The Specificity of Early Infantile Autism,”
Acta Paedopsychiatrica
25 (1958): 108–13.

“one of the nation’s leading authorities”:
William G. Patrick, “Bizarre Withdrawal Symptoms Mark Infantile Autism Cases,”
Salt Lake City Tribune
, March 17, 1967.

“a recognized authority”:
“Autism Film Screened Tonight,”
Oxnard Press Courier
, May 8, 1969.

“two major schools of thought”:
Ellen Hoffman,
Washington Post
, July 1969.

Robert Crean was a playwright:
Robert J. Crean papers, 1947–1971, Wisconsin Historical Society Archives, Wisconsin Center for Film and Theater Research,
http://digital.library.wisc.edu/1711.dl/wiarchives.uw-whs-us0095an
.

The episode was called “Conall”:
TV listings,
Herald Statesman
, February 6, 1965.

The program aired:
Author interview with Christopher Crean. Crean provided the authors a copy of the original show his father produced in 1965, “Directions ’65: ‘Conall.’ ”

referring to the “Rimland book”:
Author interview with Ruth Sullivan.

The National Society for Autistic Children:
Interviews with Ruth Sullivan and Ellen Rampell, daughter of Herbert and Rosalyn Kahn; Frank Warren, “The Role of the National Society in Working with Families,” in
The Effects of Autism on the Family
, ed. Eric Schopler and Gary Mesibov (New York: Plenum Press, 1984).

CHAPTER 13: HOME ON A MONDAY AFTERNOON

“Blind Child Slow Learner”:
This and other recollections about Frankie Barton are from an author interview with Alice and George Barton.

Wouldn’t that be a relief?:
Author interview with Lorenzo Dall’ Armi, superintendent of the Santa Barbara school system.

election was held to replace her:
Mooza V. P. Grant, “The President Reports,”
National Society for Autistic Children, Inc., Newsletter
, Summer 1968.

legal action to prevent Grant:
Author interview with Ruth Sullivan.

lost his trust in psychiatry:
The story of the psychiatry crisis is well told in Edward Shorter,
A History of Psychiatry: From the Asylum to the Age of Prozac
(New York: John Wiley & Sons, 1997).

established the Santa Barbara:
Author interview with Mary Ellen Nava.

Then Dougie was diagnosed with autism:
This and other recollections of life in the Gibson household are from an author interview with Junie Gibson.

“I have done a terrible thing”:
“Retarded Son Is Dead: Father Calls Police to Say He Shot Boy,”
Santa Barbara Press
, January 6, 1971.

“schizophrenic reaction, childhood type”:
Ibid.

a letter to the editor appeared:
Mary Ellen Nava, “Readers Comments,”
Santa Barbara Press
, January 9, 1971.

“mercy killing”:
Mary Ellen Nava interview.

At the trial, a sympathetic psychiatrist:
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.

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.