In a Different Key: The Story of Autism (86 page)

adequately for each different child:
Mitchell L. Yell and Erik Drasgow, “Litigating a Free Appropriate Public Education: The Lovaas Hearings and Cases,”
Journal of Special Education
33 (2000): 205.

“I am
trying
to answer”:
The following facts are related in an April 3, 1997, decision on
In the Matter of Gary S. Mayerson & Lilli Z. Mayerson, Petitioners, on behalf of MM, Child
, following a hearing in front of New York Department of Health Administrative Law Judge G. Liepshutz, September 5, 1996.

“We look at it as a way of beginning”:
Kaplan interview.

“Clinical Practice Guidelines”:
“Quick Reference Guide for Parents and Professionals: Autism/Pervasive Developmental Disorders,” New York State Department of Health, 1999,
http://www.health.ny.gov/publications/4216.pdf
.

“thirty years of research”:
“Mental Health: A Report of the Surgeon General,” National Institutes of Health, 1999,
http://profiles.nlm.nih.gov/ps/access/NNBBHS.pdf
.

But not all schools had:
Information on Melinda Baird and her strategy, including “Building a Blueprint for an Appropriate and Defensible Autism Program,” were entered into the court records by Gary Mayerson during the trial.

use an “eclectic approach”:
Author interviews with a wide range of experts in the field of autism and studies on eclectic behavior approaches were the basis for this information. See also J. S. Howard et al., “A Comparison of Intensive Behavior Analytic and Eclectic Treatments for Young Children with Autism,”
Research in Developmental Disabilities
26, no. 4 (2005), 359–83.

In 2005, Glen Sallows:
Sallows and Graupner, “Intensive Behavioral Treatment.”

CHAPTER 25: THE QUESTIONS ASKED

copied again and again:
Helen Green Allison in
Aspects of Autism: Biological Research
, ed. Lorna Wing (London: Gaskell Psychiatry, 1988), 18–20.

teacher named Sybil Elgar:
Lawrence Goldman, ed., “Elgar, Sybil Lillian,”
Oxford Dictionary of National Biography 2005–2008
(Oxford University Press, 2013), 344.

Helen Green Allison was:
Micah Buis, “Educating About Autism,”
Vassar, the Alumnae/i Quarterly
, Fall 2006.

children with autism could be taught:
Goldman, “Elgar, Sybil Lillian,” 344.

to ask these questions:
Uta Frith, “Looking Back: The Avengers of Psychology,”
Psychologist
(British Psychological Society), August 2009.

The inside of the box:
Neil O’Connor and Beate Hermelin, “Auditory and Visual Memory in Autistic and Normal Children,”
Journal of Mental Deficiency Research
11, no. 2 (1967): 126–31.

CHAPTER 26: WHO COUNTS?

Victor Lotter left South Africa:
Details of Lotter’s early life and hiring in London are from an author interview with Grace Lotter, his wife.

an epidemiological study:
Victor Lotter, “Epidemiology of Autistic Conditions in Young Children,”
Social Psychiatry
1, no. 3 (1966): 124–35.

“It is by no means clear”:
Michael Rutter, “Concepts of Autism: A Review of Research,”
Journal of Child Psychology and Psychiatry
9 (1968): 1.

“one or another isolated symptom”:
Leo Kanner, “Infantile Autism and the Schizophrenias,”
Behavioral Science
10, no. 4 (1965), 413.

preservation of sameness:
Leo Kanner and Leon Eisenberg, “Childhood Schizophrenia: Symposium, 1955: 6. Early Infantile Autism, 1943–55,”
American Journal of Orthopsychiatry
26, no. 3 (1956): 556–66.

“Creak’s Nine Points”:
Mildred Creak, “Schizophrenic Syndrome in Childhood: Further Progress Report of a Working Party,”
Developmental Medicine and Child Neurology
6 (1964): 530–35.

“The point where a line is drawn”:
Lotter, “Epidemiology,” 132.

“ ‘True’ prevalence may not be”:
Ibid., 132.

CHAPTER 27: WORDS UNSTRUNG

be replaced by “autistic”:
Dorothy V. M. Bishop, “Forty Years On: Uta Frith’s Contribution to Research on Autism and Dyslexia, 1966–2006,”
Quarterly Journal of Experimental Psychology
61, no. 1 (1988): 16–26.

teaching methods were shaped:
B. Hermelin and N. O’Connor, “Remembering of Words by Psychotic and Normal Children,”
British Journal of Psychiatry
(1967): 213–18.

“collaboration with the authors”:
N. O’Connor and B. Hermelin, “Auditory and Visual Memory in Autistic and Normal Children,”
Journal of Mental Deficiency Research
11, no. 2 (1967): 126–31.

biggest names in the field:
See Bishop, “Forty Years On.”

Her book,
Autism, Explaining:
Uta Firth,
Autism: Explaining the Enigma
(Oxford, UK: Basil Blackwell, 1989).

CHAPTER 28: THE GREAT TWIN CHASE

“any doctor knowing”:
M. P. Carter, “Twins with Early Childhood Autism,”
Journal of Pediatrics
71, no. 2 (1967): 303.

the names came to be given:
Author interview with Sir Michael Rutter.

“the possibility of genetic contributions”:
As quoted in Leon Eisenberg, “Why Has the Relationship Between Psychiatry and Genetics Been So Contentious?”
Genetics in Medicine
3 (2001): 377.

“become an expert in something”:
This and other recollections from work on autism in twins are from an author interview with Susan Folstein.

Twenty-one sets of twins:
Susan Folstein and Michael Rutter, “Genetic Influences and Infantile Autism,”
Nature
265, no. 5596 (1977): 726–28.

CHAPTER 29: FINDING THEIR MARBLES

school called Family Tree:
Author interview with Simon Baron-Cohen.

a concept called Theory of Mind:
Heinz Wimmer and Josef Perner, “Beliefs About Beliefs: Representation and Constraining Function of Wrong Beliefs in Young Children’s Understanding of Deception,”
Cognition
13, no. 1 (1983): 103–28.

became an instant classic:
David Premack and Guy Woodruff, “Does the Chimpanzee Have a Theory of Mind?”
Behavioral and Brain Sciences
4 (1978): S15–S26.

“passed the false belief test”:
Wimmer and Perner, “Beliefs About Beliefs,” 113.

“This is Sally”:
Details of the experimental framework are from an author interview with Simon Baron-Cohen. In addition, we received a video re-creation of the “Sally-Ann Experiment” from Simon Baron-Cohen, produced by Hugh Phillips and academic consultant Ilona Roth for the Open University, UK, 1990.

field’s landmark papers:
Simon Baron-Cohen, Alan M. Leslie, and Uta Frith,
“Does the Autistic Child Have a ‘Theory of Mind’?”
Cognition
21 (1985): 37–46.

“strongly support the hypothesis”:
Ibid., 43.

debated for years:
See, for example, S. Fisch, “Autism and Epistemology IV: Does Autism Need a Theory of Mind?”
American Journal of Medical Genetics Part A
161A, no. 10 (2013): 2464–80.

“weak central coherence”:
Amitta Shah and Uta Frith, “Why Do Autistic Individuals Show Superior Performance on the Block Design Task?”
Journal of Child Psychology and Psychiatry
34, no. 8 (1993): 1351–64; and Francesca Happé and Uta Frith, “The Weak Coherence Account: Detail-focused Cognitive Style in Autism Spectrum Disorders,”
Journal of Autism and Developmental Disorders
36, no. 1 (2006): 5–25.

“an extreme male brain”:
Simon Baron-Cohen,
The Essential Difference: Male and Female Brains and the Truth About Autism
(New York: Basic Books, 2004), 133–54.

CHAPTER 30: THE AUTISM SPECTRUM

“a concept of considerable complexity”:
Lorna Wing, “The Continuum of Autistic Characteristics,” in
Diagnosis and Assessment in Autism
, ed. Eric Schopler and Gary Mesibov (New York: Plenum Press, 1988), 92.

Wing later recalled:
Unless otherwise noted, biographical information about Lorna Wing is from Giulia Rhodes, “Autism: A Mother’s Labour of Love,”
Guardian
, May 24, 2011; “Lorna Wing; Psychiatrist Whose Work Did Much to Improve the Understanding of Autism After Her Only Child Had the Condition Diagnosed,”
Times
(London), June 12, 2014; and “Lorna Wing—Obituary,”
Daily Telegraph
, June 9, 2014.

became its director:
Traolach S. Brugha, Lorna Wing, John Cooper, and Norman Sartorius, “Contribution and Legacy of John Wing, 1923–2010,”
British Medical Journal
198, no. 3 (2011): 176.

Lotter’s landmark study:
Victor Lotter, “Epidemiology of Autistic Conditions in Young Children,”
Social Psychiatry
1, no. 4 (1967): 163–73.

the dominant personality in parent advocacy:
“Dr Lorna Wing OBE—1928-2014,” National Autistic Society, June 13, 2014,
http://web.archive.org/web/20150315024118/http://www.autism.org.uk/news-and-events/news-from-the-nas/dr-wing-obe-1928–2014.aspx
.

start Britain’s National Society:
Frank Warren, “The Role of the National Society in Working with Families,” in
The Effects of Autism on the Family
, Eric Schopler and Gary Mesibov, eds. (New York: Plenum Press, 1984), 102.

that chose Sybil Elgar to run:
Adam Feinstein,
A History of Autism: Conversations with the Pioneers
(Malden, MA: Wiley-Blackwell, 2010), 88.

an overwrought parent:
It was different when Rimland’s audience was comprised of other parents, legislators, and media. In those situations, he alluded to his status as a parent without hesitation.

“the child’s name should always be used”:
Lorna Wing,
Autistic Children: A Guide for Parents
(New York: Brunner/Mazel, 1972), 90.

the Camberwell Register:
Camberwell psychiatric case register records, available at
http://www.kingscollections.org/catalogues/kclca/collection/i/10in7050/
.

a database for psychiatric research:
Lorna Wing, Christine Bramley, Anthea Hailey, and J. K. Wing, “Camberwell Cumulative Psychiatric Case Register
Part I: Aims and Methods
,”
Social Psychiatry
3, no. 3 (1968): 116–23.

did not meet the full set:
Author interviews with Susan Folstein and Sir Michael Rutter.

she was hired:
Author interview with Judith Gould.

“the effect of excluding those”:
Fred Volkmar, Rhea Paul, Ami Klin, and Donald Cohen,
Handbook of Autism and Pervasive Developmental Disorders, Diagnosis, Development Neurobiology, and Behavior
(Hoboken, NJ: John Wiley & Sons, 2005), 599.

“triad of impairment”:
Wing and Gould’s three-part concept of autism was reminiscent of, and likely informed by, Rutter’s much earlier proposal that autism manifested in three “domains.” But they introduced deficit of “imagination” to the mix and, more important, emphasized the relative looseness and flexibility of their triad.

“borderline of normality”:
Volkmar et al.,
Handbook of Autism
, 599.

“Nature never draws a line”:
Lorna Wing, “Reflections on Opening Pandora’s Box,”
Journal of Autism and Developmental Disorders
35, no. 2 (2005): 202.

She kept writing about it:
See, for example, M. B. Denckla, “New Diagnostic Criteria for Autism and Related Behavioral Disorders—Guidelines for Research Protocols,”
Journal of the American Academy of Child Psychiatry
25, no. 2 (1986): 221–24.

revised her classic parent handbook:
Lorna Wing,
The Autistic Spectrum: A Guide for Parents and Professionals
(London: Constable, 1996).

CHAPTER 31: THE AUSTRIAN

the “Wandering Scholars”:
Maria Felder Asperger, “Hans Asperger (1906–1980) Leben und Werk,” in
Hundert Janfre Kind-in Jugendpsychiatries
, ed. R. Castell (Germany: V&R Unipress, 2008), p. 100.

There is no record:
At the time of the writing of this book, Herwig had submitted for publication his paper “Hans Asperger and Nazi Race Hygiene in WW II Vienna” to the
Journal of Social History of Medicine
.