In a Different Key: The Story of Autism (92 page)

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?”