by John Donvan
a new panel was convened: Immunization Safety Review: Vaccines and Autism (Washington, DC: National Academy Press, 2004).
SafeMinds published a press release: SafeMinds, “SafeMinds Outraged That IOM Report Fails American Public,” press release, May 18, 2004, http://www.prnewswire.com/news-releases/safeminds-outraged-that-iom-report-fails-american-public-74103762.html.
composed in advance: David Kirby, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy (New York: St. Martin’s Press, 2005), 376–77.
an hour-long television documentary: “MMR: What They Didn’t Tell You,” Dispatches, Channel 4 (UK), original airdate November 18, 2004.
in an interview in Texas: Bonnie Estridge, “I Demand the Right to Clear My Name,” Express, July 17, 2006.
firms advertised on TV: Margaret Cronin Fisk, “Mercury’s Legal Morass: A Surge of Lawsuits Allege That Vaccinations Triggered Autism,” National Law Journal, March 20, 2002.
“forcing the multi-billion dollar”: The notice was a press release attributed by PRNewswire to the Portland, Oregon, firm Williams, Dailey, O’Leary, Craine & Love.
The response was huge: Fisk, “Mercury’s Legal Morass.”
a brief rider was mysteriously inserted: The “mystery” was covered by blogs and mainstream media. See, for example, Cheryl Gay Stolberg, “A Capitol Hill Mystery: Who Aided Drug Maker?” New York Times, November 29, 2002.
in an exchange with a skeptical blogger: Citizen Cain’s report of their exchange can be found at “Slouching Toward Truth—Autism and Mercury,” November 30, 2005, http://citizencain.blogspot.com/2005/11/slouching-toward-truth-autism-and_30.html.
It went up: R. Schechter and J. K. Grether, “Continuing Increases in Autism Reported to California’s Developmental Services System: Mercury in Retrograde,” Archives of General Psychiatry 65, no. 1 (2008): 19–24.
the story still held: McCarthy’s first book on the subject, Louder Than Words: A Mother’s Journey in Healing Autism (New York: Dutton, 2007), became a New York Times bestseller.
CHAPTER 43: THE GREATEST FRAUD
three special masters took their seats: Gardiner Harris, “Opening Statements in Case on Autism and Vaccinations,” New York Times, June 12, 2007.
Hundreds did so: As reported in “Autism Update,” July 12, 2007, filing, “In Re: Claims for Vaccine Injuries Resulting in Autism Spectrum Disorder or a Similar Neurodevelopmental Disorder,” Office of Special Masters. All such updates issued in the case are available online at http://www.uscfc.uscourts.gov/docket-omnibus-autism-proceeding.
wearing a noise-muffling headset: See Harris, “Opening Statements,” for this and other details of courtroom events not evident in the transcript.
Theresa, provided moving testimony: Full transcript at http://www.uscfc.uscourts.gov/cedillo-v-secretary-health-and-human-services-case-no-98916v-concluded-june-26-2007.
a front-page story: Jane Gross and Stephanie Strom, “Autism Debate Strains a Family,” New York Times, June 18, 2007.
sharing with the autism community: Excerpts of Katie Wright’s postings to the EOH Yahoo! group (which has since become a restricted group) were detailed in Seth Mnookin, The Panic Virus (New York: Simon & Schuster, 2012), 239–42.
videotaped interview with David Kirby: “David Kirby Interviews Katie Wright,” April 19, 2007, available at http://www.autismmedia.org/media15.html.
A terse statement: “Statement from Bob and Suzanne Wright, Co-founders of Autism Speaks,” retrieved via web.archive.org/web/20070806215254/http://www.autismspeaks.org/wrights_statement.php.
continued communicating with her online public: “Statement on Autism Speaks from Katie Wright,” Adventures in Autism, June 15, 2007, web.archive.org/web/20150322050800/http://adventuresinautism.blogspot.com/2007/06/statement-on-autism-speaks-from-katie.html.
That executive was Alison Singer: Author interview with Alison Singer.
tripled to more than 25,000: Jessica Atwell et al., “Nonmedical Vaccine Exemptions and Pertussis in California, 2010,” Pediatrics, published online September 30, 2013, http://pediatrics.aappublications.org/content/early/2013/09/24/peds.2013-0878.full.pdf+html.
a twenty-year high in 2014: Gary Baum, “Hollywood’s Vaccine Wars: L.A.’s ‘Entitled’ Westsiders Behind City’s Epidemic,” Hollywood Reporter, September 12, 2014. Reporting on parents seeking exemptions for their children’s vaccinations, the paper found the exemption rate was highest for the children of Hollywood’s elite, “particularly those attending exclusive, entertainment-industry-favored child care centers, preschools, and kindergartens.” At one school, the opt-out figure was 57 percent; at another, 62 percent. The paper pointed out that “such numbers are in line with immunization rates in developing countries like Chad and South Sudan.”
a single email led her to an answer: Copy of the email provided to authors by Alison Singer.
“leave no stone unturned”: Proposed text changes contained in memo attached to email: “Intro draft provisions & priorities-revised 1-13-09.”
Singer emailed Wright: Copy of the email provided to authors by Alison Singer.
Wright’s generous response: Copy of the response email provided to authors by Alison Singer.
She voted to reject: Interagency Autism Coordinating Committee, Full Committee Meeting, January 14, 2009. Transcript available at https://iacc.hhs.gov/events/.
Autism Speaks’s official response: Autism Speaks, “Autism Speaks Withdraws Support for Strategic Plan for Autism Research, Decries Unexpected Change in Final Approval Process,” press release, January 15, 2009, https://www.autismspeaks.org/about-us/press-releases/autism-speaks-withdraws-support-strategic-plan-autism-research-decries-unexp.
took a direct shot: “NAAR Founder Eric London Resigns from Autism Speaks Citing Disagreement over Vaccine Research,” Autism Science Foundation, June 30, 2009, autismsciencefoundation.wordpress.com/2009/06/30/naar-founder-eric-london-resigns-from-autism-speaks-citing-disagreement-over-autismvaccine-research/.
policy statement that endorsed: “Information About Vaccines and Autism,” Autism Speaks, January 3, 2010, https://web.archive.org/web/20110620215135/http://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism.
for their “silence”: See, for example, John Stone, “Bob and Suzanne Wright, Why Won’t Autism Speaks Address the Vaccine Issue?” Age of Autism, February 22, 2011, http://www.ageofautism.com/2011/02/bob-and-suzanne-wright-why-wont-autism-speaks-address-the-vaccine-issue.html.
Autism Speaks’s financial contribution: Financial data from Autism Speaks annual reports, available at https://www.autismspeaks.org/about-us/annual-reports.
amount was not much higher: In 2013, for example, the organization’s total operating expenses for the year stood at $120 million, most of which was spent on advocacy, awareness, and overhead, with approximately $15 million going to scientists as grants. In 2005, NAAR distributed grants totaling $6.9 million, and CAN gave out $4.1 million ($11 million combined).
potential dangers of vaccines: Meredith Wadman, “Autism’s Fight for Facts: A Voice for Science,” Nature 479 (2001): 28–31.
average of $45 million per year: “About SFARI,” Simons Foundation Autism Research Initiative, https://sfari.org/about-sfari.
Eventually, Autism Speaks did choose sides: Rob Ring and Bob Wright, “Vaccines and Autism,” updated statement, https://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism.
a 174-page decision: Decision, Office of Special Masters, No. 98-916V, filed February 12, 2009.
the longest in the GMC’s history: History of case and ruling contained in General Medical Counsel, Fitness to Practice Hearing,
www.nhs.uk/news/2010/01january/documents/facts%20wwsm%20280110%20final%20complete%20corrected.pdf.
The Lancet finally fully retracted: “RETRACTED: Ileal-Lymphoid-Nodular Hyperplasia, Non-Specific Colitis, and Pervasive Developmental Disorder in Children,” Lancet 351, no. 9103 (1998): 637–41.
“I feel I was deceived”: Sarah Boseley, “Lancet Retracts ‘Utterly False’ MMR Paper,” Guardian, February 2, 2010.
“struck off the medical register”: Sarah Boseley, “Andrew Wakefield Struck Off Register by General Medical Council,” Guardian, May 24, 2010.
“Hippocrates Would Puke”: Editorial, “Hippocrates Would Puke: Doctor Hoaxed Parents into Denying Kids Vaccine,” New York Daily News, February 5, 2010.
Time magazine took this idea: “Great Science Frauds,” Time, January 12, 2012.
CHAPTER 44: FINDING A VOICE
ad-libbed a line: Author interview with Alex Plank.
directed documentary films: autism reality, produced and directed by Alex Plank for Wrong Planet, https://www.youtube.com/watch?v=jLOCYubVc7g.
ill at ease with his environment: Details of Alex Plank’s childhood from author interviews with Alex Plank and his parents, Mary and Doug.
hopelessly arcane: See K. Kasmini and S. Zasmani, “Asperger’s Syndrome: A Report of Two Cases from Malaysia,” Singapore Medical Journal 36, no. 6 (1995): 641–43; S. A. Cooper, W. N. Mohamed, and R. A. Collacott, “Possible Asperger’s Syndrome in a Mentally Handicapped Transvestite Offender,” Journal of Intellectual Disability Research 37 (1993): 189–94; and M. L. Berthier, “Corticocallosal Anomalies in Asperger’s Syndrome,” American Journal of Roentgenology 162, no. 1 (1994): 236–37.
she named OASIS: Patricia Romanowski Bashe and Barbara L. Kirby, The Oasis Guide to Asperger Syndrome (New York: Crown, 2001), 2–4.
hit 1 million: Ibid., 4.
“a web community”: Wrong Planet, http://wrongplanet.net/.
it already had 328: These numbers were derived using web.archive.org to spot-check during the time periods cited.
“chatting online allows”: Samantha Sordyl, “Creating an Asperger’s Community,” Washington Post, December 20, 2005.
Wired magazine’s Steve Silberman wrote: Steve Silberman, “The Geek Syndrome: Autism—and Its Milder Cousin Asperger’s Syndrome—Is Surging Among the Children of Silicon Valley. Are Math-and-Tech Genes to Blame?” Wired, December 2001.
narrator was a fifteen-year-old boy: Mark Haddon, The Curious Incident of the Dog in the Night-Time (New York: Vintage, 2004).
“a real girl”: Autism Talk TV, https://www.youtube.com/watch?v=eIqFrbgBEQY.
only one famous person: To be sure, there were less-well-known figures, several of whom were invited to speak to parents by the National Association for Autistic Children. These included William Donovan, who gave a talk in 1970, and Jerry Alter, who gave a talk in 1972, at the age of twenty-one.
describes herself that way: Temple Grandin, http://www.templegrandin.com/.
“reasons for their past problems”: Lorna Wing, “Past and Future of Research on Asperger Syndrome,” in Asperger Syndrome, ed. Ami Klin, Fred R. Volkmar, and Sara S. Sparrow (New York: Guilford Press, 2000), 419.
well-established cultural phenomenon: David C Giles, “ ‘DSM-5 Is Taking Away Our Identity’: The Reaction of the Online Community to the Proposed Changes in the Diagnosis of Asperger’s Disorder,” Health 18, no. 2 (2014): 179–95.
“dash of autism for myself”: Uta Frith, ed., Autism and Asperger Syndrome (Cambridge, UK: Cambridge University Press, 1991), 26.
“while the other people socialized”: Temple Grandin, Thinking in Pictures: My Life with Autism, Expanded Edition (New York: Vintage, 2006), 122.
“the only explanation for the full range”: Norm Ledgin, Diagnosing Jefferson: Evidence of a Condition That Guided His Beliefs, Behavior, and Personal Associations (Arlington, TX: Future Horizons, 2000), 2.
“Now it’s almost cool”: Amy S. F. Lutz, “You Do Not Have Asperger’s,” Slate, May 22, 2013, http://www.slate.com/articles/health_and_science/medical_examiner/2013/05/autism_spectrum_diagnoses_the_dsm_5_eliminates_asperger_s_and_pdd_nos.html.
On his own blog: Tom Hobben, Adventures in Aspergers: The Side Effects of Parenthood, http://theaspieadventures.blogspot.com/.
“means for making a diagnosis”: “Take the AQ Test,” Wired, December 12, 2001, http://archive.wired.com/wired/archive/9.12/aqtest.html.
“a conceptual gadget”: Benjamin Wallace, “Is Everyone on the Autism Spectrum?” New York Magazine, October 28, 2012.
“The self-diagnosis boom”: Wallace, “Is Everyone on the Autism Spectrum?”
“a great expenditure of mental energy”: Plank, as quoted in autism reality.
founded an organization called GRASP: Author interview with Michael John Carley.
spent nearly a third of his life: Cara Buckley, “Man Obsessed with Trains Again Runs Afoul of Law,” New York Times, November 11, 2006.
“People take one look at him”: Colleen Long, “Darius McCollum, Serial Transit Impostor, Arrested 29 Times for Stealing Trains and Buses,” Huffington Post, August 12, 2013, http://www.huffingtonpost.com/2013/08/12/darius-mccollum_n_3742778.html.
“Let us focus instead on mourning”: Statement from Michael John Carley on the Newtown, Connecticut, shootings, December 14, 2012, available at https://web.archive.Org/web/20121218041020/http://grasp.org/profiles/blogs/statement-from-michael-john-carley-on-the-newtown-ct-shootings.
This was a data-based finding: Peter Szatmari and Marshall B. Jones, “IQ and the Genetics of Autism,” Journal of Child Psychology and Psychiatry 32, no. 6 (1991): 897–908.
That year, the CDC: Centers for Disease Control and Prevention, Morbidity and Mortality Weekly Report 63, no. 2, Surveillance Summaries, March 28, 2014.
CHAPTER 45: NEURODIVERSITY
“a wake-up call to families”: NYU Child Study Center, “Millions of Children Held Hostage by Psychiatric Disorders,” press release, December 3, 2007.
“Don’t mourn for us”: Jim Sinclair, “Don’t Mourn for Us,” originally posted November 3, 1993, at http://www.autreat.com/dont_mourn.html.
“that it would be much better”: Dick Cavett interview with Bruno Bettelheim, The Dick Cavett Show, ABC, original airdate June 2, 1971.
“left your child’s bewildered body behind”: Geoffrey Cowley, “Understanding Autism,” Newsweek, July 30, 2000.
“This disease has taken”: Autism Speaks, “Founders’ Message. A Message from Suzanne and Bob Wright: Co-founders,” 2006, available at https://web.archive.org/web/20060209121732/http://www.autismspeaks.org/founders.php.
an Australian sociologist: Judy Singer, “Odd People In: The Birth of Community Amongst People on the ‘Autistic Spectrum,’ ” BA diss., University of Technology, Sydney, 1998.
“Neurotypical Syndrome”: Institute for the Study of the Neurologically Typical, March 18, 2002, http://autisticadvocacy.org/.
“neurodiversity may be”: Harvey Blume, “Neurodiversity: On the Neurological Underpinnings of Geekdom,” Atlantic, September 1998, http://www.theatlantic.com/past/docs/unbound/citation/wc980930.htm.
“changing the child’s mind and personality”: Christopher P. Manfredi and Antonia Maioni, “Reversal of Fortune: Litigating Health Care Reform in Auton v. British Columbia,” Supreme Court Law Review 29, no. 2 (2005), 129.
“Nothing About Us, Without Us”: Autistic Self Advocacy Network, http://autisticadvocacy.org/.
“We struggle socially”: Mike Ervin, “Autism Group Founder: It’s Time to Listen to What We Have to Say,” Independence Today, June 13, 2013, http://www.itodaynews.com/2013-issues/june13/asan-cover.htm.
“continued dehumanizing advertising”: Ari Ne’eman, “Comments at November 30, 2007 IACC Meeting,” Autistic Self Advocacy Network, December 8, 20
07, http://autisticadvocacy.org/2007/12/comments-762at-november-30-2007-iacc-meeting/.
“issues related to the quality of life”: Ari Ne’eman, “The Future (and the Past) of Autism Advocacy, Or Why the ASA’s Magazine, The Advocate, Wouldn’t Publish This Piece,” Disability Studies Quarterly 30, no. 1 (2010). Text available at http://dsq-sds.org/article/view/1059/1244.
“To pursue normalization”: Ibid.
They had found that actual brain size: “Autism: What We Know. What Is Next?” Simons Foundation Research Initiative, May 2014, http://simonsfoundation.s3.amazonaws.com/share/sfari-specials/2014/whatweknow/20140501whatWeKnow.pdf.
that dopamine, the brain chemical: Nicholette Zeliadt, “Diverse Dopamine Defects Found in People with Autism,” Simons Foundation Autism Research Initiative, November 19, 2014, http://sfari.org/news-and-opinion/conference-news/2014/society-for-neuroscience-2014/diverse-dopamine-defects-found-in-people-with-autism.
Eye-tracking technology: W. Jones and A. Klin, “Attention to Eyes Is Present but in Decline in 2–6-Month-Old Infants Later Diagnosed with Autism,” Nature 504, no. 7480 (2013): 427–31.
the sleep of autistic children: K. A. Schreck and J. A. Mulick, “Parental Report of Sleep Problems in Children with Autism,” Journal of Autism and Developmental Disorders 30, no. 2 (2000): 127–35.
older fathers have an increased chance: Emma M. Frans et al., “Autism Risk Across Generations: A Population Based Study of Advancing Grandpaternal and Paternal Age,” JAMA Psychiatry 70, no. 5 (2013): 516–21.
mothers who take folic acid: R. J. Schmidt, R. L. Hansen, and I. Hertz-Picciotto, “Maternal Periconceptional Folic Acid Intake and Risk for Autism Spectrum Disorders in the CHARGE Case-Control Study,” American Journal of Clinical Nutrition 96, no. 1 (2012): 80–89.
Prenatal studies were also: Brian Lee et al., “Maternal Hospitalization with Infection During Pregnancy and Risk of Autism Spectrum Disorders,” Brain, Behavior, and Immunity 44 (2015): 100–105.