In a Different Key: The Story of Autism (88 page)

“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 experiment:
“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.

“long and controversial history”:
Fred R. Volkmar and Donald J. Cohen, “Classification and Diagnosis of Childhood Autism,” in
Diagnosis and Assessment in Autism
, ed. Eric Schopler and Gary Mesibov (New York: Plenum Press, 1988), 72.

“the confusion and the plethora”:
Fred R. Volkmar and Ami Klin, “Asperger Syndrome and Nonverbal Learning Disabilities,” in ibid., 107.

bring order to chaos in 1961:
Mildred Creak, “Schizophrenic Syndrome in Childhood: Progress Report of a Working Party” (April 1961),
British Medical Journal
(September 1961): 889.

“to the wolves”:
Mildred Creak, “Schizophrenic Syndrome in Childhood: Further Progress Report of a Working Party,”
Developmental Medicine and Child Neurology
6 (1964): 530.

“politely and respectfully”:
Michael Rutter, “Childhood Schizophrenia Reconsidered,”
Journal of Autism and Childhood Schizophrenia
2, no. 3 (1972): 315.

“Rutter criteria”:
This was not Rutter’s term, but was commonly used by researchers who employed his criteria. See, for example, R. J. McClelland, D. G. Eyre, O. Watson, G. J. Calvert, and Eileen Sherrard, “Central Conduction Time in Childhood Autism,”
British Journal of Psychiatry
160, no. 5 (1992): 659–63.

the criteria specified:
A description of the Rutter criteria can be found in Michael Rutter’s “Diagnosis and Definition,” in
Autism: A Reappraisal of Concepts and Treatment
, ed. Michael Rutter and Eric Schopler (New York: Plenum Press, 1978), 1–25.

“The question was not how to differentiate”:
Michael Rutter, “The Emanuel Miller Memorial Lecture 1998, Autism: Two-Way Interplay Between Research and Clinical Work,”
Journal of Child Psychology and Psychiatry
40, no. 2 (1999): 170.

National Society for Autistic Children:
After 1987, the name was changed to the Autism Society of America.

“abnormal responses to sensations”:
Edward Ritvo and B. J. Freeman, “National Society for Autistic Children Definition of the Syndrome of Autism,”
Journal of Pediatric Psychology
2, no. 4 (1977): 146.

the American Psychiatric Association’s
DSM:
The discussion of changes in the
DSM
between 1980 and 2013 are based on the actual text in the
Diagnostic and Statistical Manual of Mental Disorders
, by the American Psychiatric Association, Washington, DC:
DSM III
(1980),
DSM III-R
(1987),
DSM-IV
(1994), and
DSM-5
(2013).

more than two thousand:
Fred Volkmar and Brian Reichow, “Autism in
DSM-5:
Progress and Challenges,”
Molecular Autism
4 (2013): 13.

CHAPTER 36: MEETING OF THE MINDS

so much in common:
Anecdotes pertaining to the founding and running of CAN are from author interviews with Jon Shestack and Portia Iversen. Lisa Lewis was the conduit for the Princeton meeting: she attended the DAN conference as an autism parent alongside Portia, and also knew the Londons from the “autism community.”

focused on autism:
Anecdotes pertaining to the founding and running of NAAR are from an author interview with Karen and Eric London.

Eleven hits, out of eleven thousand:
Author interview with Karen and Eric London; author interview with researcher at Society of Neuroscience (
http://www.sfn.org/
).

The biologically based observations:
Mary Coleman, ed.,
The Autistic Syndromes
(Amsterdam: North-Holland Publishing Co., 1976).

Bauman, a pediatric neurologist:
See, for example, Margaret L. Bauman, “Brief Report: Neuroanatomic Observations of the Brain in Pervasive Development Disorders,”
Journal of Autism & Developmental Disorders
26, no. 2 (1996): 199–203.

London excused himself:
London interview.

Stanley Greenspan, who recommended:
More information of Dr. Greenspan’s Floortime can be found on his website:
http://www.stanleygreenspan.com
.

“accelerating biomedical research”:
The NAAR website no longer exists, but some material from their newsletter, the
NAARative
, can be found on the Autism Speaks website,
https://www.autismspeaks.org/news/news-item/naarative
.

courses of megavitamins:
Bernard Rimland, “Megavitamin B6 and Magnesium in the Treatment of Autistic Children and Adults,”
Neurobiological Issues in Autism, Current Issues in Autism
(1987): 389–405.

the onetime hero of autism:
Sid Baker, “Learning About Autism,”
Global Advances in Health and Medicine
2, no. 6 (2013): 38–46; author interview with Sid Baker.

they handed Rimland $25,000:
Shestack and Iversen interview.

Jon solved that problem:
Others, in addition to Jon and Portia, contributed to the costs of funding the conference.