In a Different Key: The Story of Autism (89 page)

“had the stomach for a risk/benefit relationship”:
Baker interview.

the Dallas group:
DAN! (Defeat Autism Now!) represented a loose network of medical doctors and other practitioners who remained open to the use of several of the alternative biomedical therapies discussed at the meeting. The “DAN protocol” of alternative treatments gained a following, especially among parents who believed that their children’s autism was the result of injury from vaccination. The network disbanded in 2011.

“start our own foundation”:
Portia Iversen,
Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism
(New York: Riverhead, 2006), 30.

not interested in funding biomedical research:
Although ASA did not want to join forces with either biomedical research group, from very early on they supported and contributed to CAN and NAAR’s research.

Jon and Eric got into their debate:
Recollections from this conversation are from the Shestack interview.

CHAPTER 37: THE MAGIC MAN

in medical circles as the “magic man”:
Author interview with Ed Berry.

their first set of RFPs:
Copy of original RFP sent to potential researchers from NAAR, July 1996, provided to the authors by Karen London.

“The goal is”:
John Morgan, “
ER
’s Anthony Edwards Curing Autism Now,”
USA Today
, October 12, 2000.

netted $75,000:
Author interview with Jon Shestack.

belonged to Jon Shestack:
Combating Autism Act of 2006, S. 843, 109th Cong. (2006).

“concrete clinical findings”:
Cure Autism Now,
ADVANCES: Hope, Partnership, and Action to Accelerate the Pace of Biomedical Research in Autism and Related Disorders
, 10th Anniversary Edition, Fall 2005.

composition of its scientific advisory board:
Author interview with Daniel Geschwind.

NAAR had raised nearly $850,000:
Author interview with Karen and Eric London; documents shared with authors by Karen London.

They also hired Catherine:
Author interview with Catherine Lord.

The ADI was recognized:
Michael Rutter, Anne Le Couteur, and Catherine Lord, “ADI–R, Autism Diagnostic Interview—Revised.” Details on the ADI and how it can be implemented can be found at
http://nyp.org/services/cadb-adir-diagnostic-instrument.html
.

sixty-three authors had cited:
Ibid.

by drowning or by seizures:
J. Pickett, E. Xiu, R. Tuchman, G. Dawson, and C. Lajonchere, “Mortality in Individuals with Autism, with and Without Epilepsy,”
Journal of Child Neurology
8 (2011): 932–39; Lori McIlwain, “Autism & Wandering: A Guide for Educators,” National Autism Association,
April 20, 2015,
http://nationalautismassociation.org/autism-wandering-a-guide-for-educators/
.

generations of kids:
London interview.

CHAPTER 38: PUTTING AUTISM ON THE MAP

the greatest celebrity:
The anecdotes surrounding the production of
Temple Grandin
for HBO are from an author interview with Emily Gerson Saines.

The book cracked:
Temple Grandin,
Thinking in Pictures: My Life with Autism
(New York: Vintage, 1995).

“I think she is autistic”:
Change of Habit
, directed by William Graham, produced by Joe Connelly, 1969.

“A Miracle of Love”:
Barry Kaufman published the book
Son-Rise
in 1976, a story about his son Ryan. The book became a docudrama that aired on NBC in 1979.

“You will learn to spank”:
Marcus Welby, M.D.
, Daniel Petrie, ABC. Season 1, Episode 2: “The Foal,” September 30, 1969.

“The Strangers in Our Midst”:
M. Ballin, “Autistic Children: The Strangers in Our Midst,”
McCall’s
(101), November 1973.

“The Children of the Fairies,”:
Ha’aretz
daily newspaper, 1973.

“The Kids with the Faraway Eyes”:
D. R. Katz, “Kids with the Faraway Eyes,”
Rolling Stone
, March 8, 1979, 48–53.

“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.

the original mother’s memoir:
Clara Claiborne Park,
The Siege
(Boston: Back Bay Books, 1967).

on a father’s diary:
James Copeland, based on a diary by Jack Hodges,
For the Love of Ann
(London: Random House, 1973).

which inspired a story on
60 Minutes:
Josh Greenfield,
A Child Called Noah: A Family Journey
(New York: Holt, Rinehart and Winston, 1989).

“to run an article on autism”:
Bernard Rimland, “
Rain Man
and the Savant Secrets,”
Editors Notebook, Autism Research International Newsletter
3, no. 1 (1989): 3;
http://www.ariconference.com/ari/newsletter/031/page3.pdf
.

“
Rain Man
has advanced the field of autism”:
Ibid. for Sullivan quotes on
The Oprah Winfrey Show
. See also Darold Treffert’s website at
http://www.daroldtreffert.com/
.

eight days after the movie’s premiere:
Agnes Torres Al-Shibibi, “ ‘Rain Man’ Puts Autism on the Map,”
Orlando Sentinel
, December 22, 1988.

“an outstanding portrayal”:
Lance Workman, “From Art to Autism: A Q&A with Uta Frith,”
Psychologist
(British Psychological Society), December 2013.

prodigious mental gifts:
Fran Peek,
The Real Rain Man
(Salt Lake City: Harkness Publishing Consultants, 1996).

An associate producer, Gail:
Author interview with Gail Mutrux.

Raymond would be autistic:
Author interview with Barry Levinson.

Rimland wanted Raymond:
Author interview with Steve Edelson.

“want to do it fast”:
David Ansen, Michael Reese, Sarah Crichton, and Jennifer Foote, “Who’s on First?”
Newsweek
, January 16, 1989, 52.

authority on savants:
“Savant Syndrome: Islands of Genius,” Wisconsin Medical Society,
https://www.wisconsinmedicalsociety.org/professional/savant-syndrome/
.

Bernie Rimland also brought his son:
Edelson interview; author interview with Gloria and Mark Rimland.

The posture, the voice:
Sherri Dalphonse, “Dustin and Me,”
Washingtonian
, July 1992.

“wet kitsch”:
Matt Patches, “Remembering ‘Rain Man’: The $350 Million Movie That Hollywood Wouldn’t Touch Today,”
Grantland
, January 9, 2014.

the present and future:
Temple Grandin and Margaret M. Scariano,
Emergence: Labeled Autistic
(New York: Grand Central Publishing, 1996).

“like being tied up to the rail”:
Ruth Sullivan, foreword to Temple Grandin’s
The Way I See It: A Personal Look at Autism and Asperger’s
(Arlington, TX: Future Horizons, 2008), xiv.

“an anthropologist on Mars”:
Oliver Sacks,
An Anthropologist on Mars: Seven Paradoxical Tales
(New York: Picador, 1995), 244

CHAPTER 39: SOCIETY’S EMERGENCY

his six-year-old:
This and other anecdotes in this chapter about Russell Rollens are from an author interview with Rick Rollens.

investigating sleep disorders:
Martha U. Gillette, Thomas Roth, and James P. Kiley, “NIH Funding of Sleep Research: A Prospective and Retrospective View,”
SLEEP
22, no. 7 (1999): 956–58.

4 to 5 people in 10,000:
Victor Lotter, “Epidemiology of Autistic Conditions in Young Children,”
Social Psychiatry
1, no. 3 (1966): 124–35.

The DDS report was completed:
Changes in the Population of Persons with Autism and Pervasive Developmental Disorders in California’s Developmental Services System: 1987 Through 1998
, Report to the Legislature by the Department of Developmental Services, March 1, 1999. Text available at
http://www.dds.ca.gov/Autism/docs/autism_report_1999.pdf
.

“State Study Finds”:
Thomas H. Maugh, “State Study Finds Sharp Rise in Autism Rate,”
Los Angeles Times
, April 16, 1999.

“Defining an Era”:
Tracy Mayor, “A Disorder That’s Defining an Era,”
Child
, December 2005.

421
Time
made it a cover story:
J. Madeleine Nash and Amy Bonesteel, “The Secrets of Autism,”
Time
, May 6, 2002.

“We have an epidemic”:
The Autism Epidemic—Is the NIH and CDC Response Adequate? Hearing Before the House Committee on Government Reform
, 107th Cong. (2002), statement of Dan Burton, Chairman of the Committee.

1 in 166 children:
Unless otherwise noted, statistics on autism prevalence in this chapter are from
Prevalence of the Autism Spectrum Disorders (ASDs) in Multiple Areas of the United States, 2000 and 2002
, Community Report from the Autism and Developmental Disabilities Monitoring (ADDM)
Network, available at
http://www.cdc.gov/ncbddd/autism/documents/AutismCommunityReport.pdf
; and
Prevalence of the Autism Spectrum Disorders (ASDs) in Multiple Areas of the United States, 2008
, Community Report from the Autism and Developmental Disabilities Monitoring (ADDM) Network, available at
http://www.cdc.gov/ncbddd/autism/documents/ADDM-2012-Community-Report.pdf
.

Researchers in 2012:
Eric Fombonne, Judith S. Miller, et al., “Autism Spectrum Disorder Reclassified: A Second Look at the 1980s Utah/UCLA Autism Epidemiologic Study,”
Journal of Autism and Developmental Disorders
43, no. 1 (2012): 200–210.

based on Ritvo’s criteria:
E. R. Ritvo et al., “The UCLA–University of Utah Epidemiologic Survey of Autism: Prevalence,”
American Journal of Psychiatry
146, no. 2 (1989): 194–99.

increased surveillance:
Eric Fombonne, “Epidemiology of Pervasive Developmental Disorders,”
Pediatric Research
65, no. 6, 591–98.

any count starts from zero:
Author interview with Paul Shattuck.

“Autism Increases DRAMATICALLY”:
Post by “Orac,” “Well, That Didn’t Take Long,” Respectful Insolence (Science Blogs), April 5, 2006,
http://scienceblogs.com/insolence/2006/04/05/well-that-didnt-take-long-the
.

“Florida has reported”:
Autism: Present Challenges, Future Needs—Why the Increased Rates? Hearing Before the House Committee on Government Reform
, 106th Cong. (2000), statement of Dan Burton, Chairman of the Committee.

according to federal data:
Prevalence of the Autism Spectrum Disorders (ASDs) in Multiple Areas of the United States, 2008
, 8–23.

Minnesota and Iowa:
Doug Smith, “Autism Rates by State,”
Los Angeles Times
, December 9, 2011.

“I’ll call a kid a zebra”:
Arthur Allen, “The Autism Numbers, Why There’s No Epidemic,”
Slate
, January 15, 2007.

“I admit up front that”:
David Amaral, Daniel Geschwind, and Geraldine Dawson,
Autism Spectrum Disorders
(Oxford University Press, 2011), 4.

“mentally retarded” dropped precipitously:
Paul T. Shattuck, “Prevalence of Autism in US Special Education: The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education,”
Pediatrics
117 (2006): 1029. Shattuck’s data was compiled from the 1984–2003 annual special-education counts published by the US Department of Education.

“the relationship between the rising”:
Ibid., 1028.

“
will
have autism”:
Autism Awareness Commercial, “Autism Awareness,”
https://www.youtube.com/watch?v=y7t3daKTQMg
.