In a Different Key: The Story of Autism (84 page)

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,”
Recent 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.