In a Different Key: The Story of Autism (85 page)

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.

Schopler arrived in North Carolina:
Eric Schopler’s and Robert Reichler’s recollections of their experiences come from “Recollections of My Professional Development,” Schopler presentation for the Emma P. Bradley Symposium, October 22, 1971; Gary Mesibov interview with Eric Schopler, June 18, 1988, provided by TEACCH; Schopler archival interview with Brenda Denzler; and author interview with Robert Reichler.

“Psychotic Children’s Group”:
This experiment is described in Rex W. Speers and Cornelius Lansing,
Group Therapy in Childhood Psychosis
(Chapel Hill: University of North Carolina Press, 1965).

a mother named Mardy:
In the interest of privacy preferences, the surname is omitted in this case.

videotapes of his sessions:
The tapes were edited into the film
Conjoint Parent-Therapist Teaching of a Pre-School Psychotic Child, Child Research Project
, University of North Carolina, 1967.

“than as having caused them”:
Eric Schopler and Robert Reichler, “Parents as Co-therapists in the Treatment of Psychotic Children,”
Journal of Autism and Childhood Schizophrenia
1, no. 1 (1971): 87–102.

Betty was a special-education teacher:
Author interview with Betty and Norman Camp.

One of her most vivid memories:
Author interview with Mary Lou Warren.

George had just attempted to feed grits:
Mary Lou “Bobo” Warren,
My Humpty-Dumpty: A Mother’s View
, unpublished manuscript given to authors by Mary Lou Warren.

“not to rest until something”:
Warren,
My Humpty-Dumpty
.

CHAPTER 22: 47 PERCENT

On March 10, 1987:
Daniel Goleman, “Researcher Reports Progress Against Autism,”
New York Times Magazine
, March 10, 1987.

“to transform a large proportion”:
Ibid.

“If you met them now”:
Ibid.

All nine achieved “normal functioning”:
O. Ivar Lovaas, “Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children,”
Journal of Consulting and Clinical Psychology
55, no. 1 (1955): 3–9.

“The Lovaas study”:
Bernard Rimland, “In Defense of Ivar Lovaas,” editor’s column, in
Autism Research Review International
1, no. 1 (1987): 3.

“having neurological problems”:
Gary Mesibov interview with Eric Schopler, June 18, 1988, provided by TEACCH.

“with a different woman”:
Ibid.

“dismayed to read”:
Eric Schopler, “Lovaas Study Questioned,” letters to the editor, in
Autism Research Review International
1, no. 3 (1987): 6.

“improvement”:
Eric Schopler and Gary B. Mesibov,
Diagnosis and Assessment in Autism
(New York: Plenum Press, 1988), 6.

threatened a libel suit:
Mesibov interview with Schopler.

“widely and untrue”:
Ivar Lovaas, “Clarifying Comments on the UCLA Young Autism Project,” University of California, Los Angeles, Department of Psychology, August 2, 2000.

“from prevailing theories”:
Ibid.

“and educational functioning”:
John J. McEachin, Tristram Smith, and O. Ivar Lovaas, “Long-Term Outcome for Children with Autism Who Received Early Intensive Behavioral Treatment,”
American Journal on Mental Retardation
97, no. 4 (1993): 360.

“a kind of scientific limbo”:
R. M. Foxx, “Commentaries on McEachin, Smith and Lovaas: Rapid Effects Awaiting Independent Replication,”
American Journal of Mental Retardation
97, no. 3 (1993): 375.

“implemented throughout”:
Tristram Smith, “Outcome of Early Intervention for Children with Autism,”
Clinical Psychology: Science and Practice
6 (1999): 40.

CHAPTER 23: LOOK AT ME

“It’s hanging in the job placement office”:
Unless otherwise noted, this and all subsequent quotations attributed to Bridget Taylor are derived from several author interviews with Taylor. Details of her work with the Maurice children come from the same interviews, and from Catherine Maurice,
Let Me Hear Your Voice
(New York: Knopf, 1993).

Bruno Bettelheim had told:
Bruno Bettelheim,
The Empty Fortress: Infantile Autism and the Birth of the Self
(Glencoe, NY: Free Press, 1976).

Bernard Rimland’s book:
Bernard Rimland,
Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior
(Appleton-Century-Crofts, Educational Division, Meredith Publishing, 1964).

Clara Park’s 1966
The Siege:
Clara Claiborne Park,
The Siege
(New York: Harcourt, Brace & World, 1967).

CHAPTER 24: FROM COURTROOM TO CLASSROOM

“immediate and intense intervention”:
Unless otherwise noted, recollections about the Mayersons’ experience are from an author interview with Gary Mayerson.

“despicable”:
Author interview with SueAnn Galante.

But in the 1990s:
Perry A. Zirkel, “The Autism Case Law: Administrative and Judicial Rulings,”
Focus on Autism and Other Developmental Disabilities
17, no. 2 (2002): 84–93.

“a legally hot topic”:
Ibid., 84.

ten times the actual proportion:
Perry A. Zirkel, “Autism Litigation Under the IDEA: A New Meaning of ‘Diproportionality’?”
Journal of Special Education Leadership
24, no. 2 (2011): 93–102.

employed an expert witness:
Memorandum Decision and Order Granting
Plaintiffs’ Motion for Attorneys’ Fees,
BD, et al., Plaintiffs, v. Barbara A. Debuono, et al.
, United States District Court, Southern District of New York, November 14, 2001.

to get ABA funding:
Janet Gramza, “Families Struggle with Schools, Governments,”
Post-Standard
(Syracuse, New York), April 14, 1997.

“is proven effective”:
Beverley Sharp, “Autism and Discrimination in British Columbia,” speech given at the British Columbia Woman’s Rights Committee, December 8, 1997.

$50,000 per child:
Glen Sallows and Tamlynn Graupner, “Intensive Behavioral Treatment for Children with Autism: Four-Year Outcome and Predictors,”
American Journal on Mental Retardation
110, no. 6 (2005): 417–38.

Before 1996, they:
Special Education: Is IDEA Working as Congress Intended? Hearing Before the House Committee on Government Reform
, 107th Cong. (2001).

In Monroe County, New York:
Gramza, “Families Struggle with Schools, Governments.”

who was furiously taking notes:
Galante interview.

Kaplan decided to contact:
Author interview with Suzanne Kaplan.

“a law alert”:
Galante interview.

talking to Professor Janet Twyman:
Author interview with Janet Twyman.

“a policy that limits”:
Transcription of minutes from hearing between Gary Mayerson and the State Department of Health, in the Matter of GSM Petition on behalf of “MM” child. Hearings began October 2, 1996, and concluded December 30, 1996, at the New York State Department of Health, Mamaroneck, New York. Transcription was provided to the authors by Gary Mayerson.

“meaningful educational benefit”:
The IDEA includes two fundamental requirements: (1) that the child will receive a free, appropriate public education in the least restrictive environment; (2) that children are placed in settings that will provide them with a meaningful educational benefit. See Pete Wright and Pamela Wright,
Wrightslaw: Special Education Law
, Second Edition (Hartford, VA: Harbor House Law Press, 2007),
www.wrightslaw.com/advoc/articles/idea.lre.fape.htm
.