In a Different Key
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“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.
“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), Novemb
er 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.
“familiar ring”: Hal Arkowitz and Scott O. Lilienfeld, “Is There Really an Autism Epidemic?” Scientific American, December 6, 2007.
The statistic burst: Author interview with Peter Bell.
“There is not a full population count”: Prevalence of the Autism Spectrum Disorders (ASDs) in Multiple Areas of the United States, 2000 and 2002, 31.
in just ten states: The number of states and counties often changes from one year to another, and from one report to another. For example, in 2008 Alabama, Arizona, Arkansas, Colorado, Florida, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, and Wisconsin participated in the ADDM Network. In 2010, however, South Carolina was not a participant; these differences can significantly alter the prevalence numbers.
The most ex
treme number: A new study released by P. C. Pantelis and D. P. Kennedy in Autism (June 2015) reports that the prevalence rate found in the South Korean 2011 study was based on flawed assumptions. Pantelis and Kennedy conclude that had the South Korean researchers compensated for the uncertainty built into their study design, the range of their results would have been almost twice as large as originally reported, making their conclusions questionable.
prevalence rate of 1 in 38: Y. S. Kim et al., “Prevalence of Autism Spectrum Disorders in a Total Population Sample,” American Journal of Psychiatry 168, no. 9 (2011): 904–12.
“We just didn’t count them”: Alice Park, “South Korean Study Suggests Rates of Autism May Be Underestimated,” Time, May 9, 2011.
her mother, Eustacia Cutler: Author interview with Emily Gerson Saines.
“reached epidemic proportions”: Speech given by Emily Gerson Saines after winning an Emmy as producer of Temple Grandin, 2010.
CHAPTER 40: THE VACCINE SCARE
the fear was ignited: Prior to the press conference, the Royal Free Hospital issued a press release—“New Research Links Autism and Bowel Disease”—and distributed a twenty-minute video news release, both promoting The Lancet’s upcoming study.
Wakefield’s paper described twelve children: A. J. Wakefield et al., “Ileal-Lymphoid-Nodular Hyperplasia, Non-Specific Colitis, and Pervasive Developmental Disorder in Children,” Lancet 351 (1998): 637–41. All details of the study relayed in this chapter are sourced from this paper.
copied Zuckerman on a letter: Wakefield presents the letter in Andrew Wakefield, Callous Disregard: Autism and Vaccines—The Truth Behind a Tragedy (New York: Skyhorse Publishing, 2010), 96–99.
“MMR are sufficient”: Rebecca Smith, “Andrew Wakefield—The Man Behind the MMR Controversy,” Telegraph, January 29, 2010.
“One more case of this”: Partial transcript of February 26, 1998, Royal Free Press Conference. This and all quotations from the press conference appear in transcript of General Medical Council, Fitness to Practice Panel, in cases of Dr. Andrew Wakefield, Professor John Walker-Smith, Professor Simon Murch. Chairman: Dr. Surendra Kumar. April 7, 2008. Available at http://wakefieldgmctranscripts.blogspot.com/2012/02/day-17.html.