In a Different Key: The Story of Autism (91 page)

the full range of alternative therapies:
Such therapies were and remain widely advertised online, especially on sites that promote the vaccine theory of autism. A critical but accessible assessment of these approaches can be found in Trine Tsouderos and Patricia Callahan, “Risky Alternative Therapies for Autism Have Little Basis in Science,”
Chicago Tribune
, November 22, 2009.

injecting boys with Lupron:
A blogger/investigator’s exhaustive and critical report on this practice can be found in Kathleen Seidel, “Autism and Lupron: Playing with Fire,”
Neurodiversity.com
, February 19, 2006,
http://web.archive.org/web/20120204153600/
http://neurodiversity.com/weblog/article/83/autism-testosterone-lupron-playing-with-fire
.

state of the available research:
The background and findings of the IOM review can be found in
Immunization Safety Review: Thimerosal-Containing Vaccines and Neurodevelopmental Disorders
(Washington, DC: National Academy Press, 2001).

Mercury Moms never doubted:
Lyn Redwood interview. In addition, Kirby’s
Evidence of Harm
depicts multiple scenes where parents are afforded direct access to top policymakers.

boasted in an online posting:
The account of this confrontation appears in Kirby,
Evidence of Harm
, 104.

“to hide the risks”:
Robert Kennedy Jr., “Deadly Immunity,”
Rolling Stone
, July 14, 2005, and
Salon.com
, June 16, 2005,
http://www.rollingstone.com/politics/news/deadly-immunity-20110209
.

“two sides to every good story”:
Kirby,
Evidence of Harm
, xii.

“hellish, lost world”:
Ibid.

“Evidence of Harm” Yahoo! group:
The “Evidence of Harm” group subsequently evolved into one called “Environment of Harm,” with a restricted membership:
https://groups.yahoo.com/neo/groups/EOHarm/info
.

optioned for a Hollywood movie:
Per
EvidenceOfHarm.com
(now defunct),
https://web.archive.org/web/20060815043144/
http://www.evidenceofharm.com/
.

Combating Autism Act:
The text and legislative history of the law can be found at
https://www.congress.gov/bill/109th-congress/senate-bill/843
.

glittered with the names of experts:
“HHS Secretary Leavitt Announces Members of the New Interagency Autism Coordinating Committee,” News Release, US Department of Health and Human Services, November 27, 2007.

CHAPTER 41: AUTISM SPEAKS

the NBC network devoted:
An NBC press release stated: “ ‘Autism: The Hidden Epidemic?’ is part of a weeklong series of special autism coverage airing across the various networks of NBC News during the week of February 21. ‘Today,’ ‘Nightly News with Brian Williams,’ CNBC, MSNBC, Telemundo and
MSNBC.com
will all provide extensive information and reports on the disorder.” Source: PRNewswire, “NBC 10 to Air One-Hour Special ‘Autism: The Hidden Epidemic?’ ” February 16, 2005.

some 40 million people:
Autism Speaks Website, “About Us: 2005 Highlights,”
www.autismspeaks.org/about-us/annual-reports/2005-highlights
.

“in most cases, exhausted and broke”:
Video of the
Today
show appearance, titled “Bob Wright: I Want My Grandson Back,” available at
http://www.today.com/id/7024923/ns/today/t/bob-wright-i-want-my-grandson-back/#.VZ0la_kgkqM
.

The doctors had diagnosed Christian:
Details of the Wright family’s experiences of autism and the founding of Autism Speaks are from authors’ interview with Bob and Suzanne Wright.

she had emailed Bob and Suzanne:
Details of Singer’s experiences and work with Autism Speaks are from authors’ interview with Alison Singer.

Photoshopped version:
Titled “Pass the Maalox: An AoA Thanksgiving Nightmare,” the image was taken down from the site after prompting criticism. The incident, which dates to late 2009, was chosen by the authors to illustrate an antagonism in the discourse that was well under way in 2005, and persists to the present day.

to have written favorably:
Amy Wallace, “An Epidemic of Fear: How Panicked Parents Skipping Shots Endanger Us All,”
Wired
, October 19, 2009.

offered six-figure salaries:
Per Autism Speaks filing of Internal Revenue Service Form 990, for 2006 and 2007.

Marcus donated $25 million:
“About Us,” Autism Speaks,
www.autismspeaks.org/about-us
.

concert that featured Jerry Seinfeld:
Lawrence Van Gelder, “Arts, Briefly,”
New York Times
, August 5, 2005.

sounding the epidemic alarm:
See, for example, Autism Speaks’s later press release, “Autism Speaks Demands an Urgent, New Response to the Autism Epidemic as CDC Updates Prevalence Estimates,” March 29, 2012.

Bob and Suzanne seemed omnipresent:
For much of the next decade, the Wrights traveled the United States and the world to promote Autism Speaks, speaking at conferences, and appearing on magazine covers and on radio and television.

5 million Starbucks cups:
Autism Speaks Annual Report, 2007, and Annual Report “Highlights,” at
https://www.autismspeaks.org/about-us/annual-reports/2007-highlights
.

Under Bob Wright’s leadership:
Marc Gunther and Henry Goldblatt, “How GE Made NBC No. 1 When He Became NBC’S CEO,”
Fortune
, February 3, 1997.

borrowed from that approach:
Giacinta Pace, “Philanthropist Wages Fight to Cure Autism, Suzanne Wright’s Foundation Raises Money to Fund Research on Disorder,” NBC News, November 12, 2009,
www.nbcnews.com/id/33868343/ns/us_news-giving/t/philanthropist-wages-fight-cure-autism/#.VZ1HY_kgkqM
.

Jon Shestack was dead set against:
Shestack’s recollections of CAN relationship with Autism Speaks are from authors’ interview with Jon Shestack.

the Londons did not see it that way:
The Londons’ recollections of NAAR’s relationship with Autism Speaks are from authors’ interview with Eric and Karen London.

“the consolidation of the two charities”:
Autism Speaks, “Autism Speaks and the National Alliance for Autism Research (NAAR) Announce Plans to Combine Operations,” press release, November 30, 2005,
https://www.autismspeaks.org/about-us/press-releases/autism-speaks-and-national-alliance-autism-research-naar-announce-plans-comb
.

Shestack was given a heads-up:
Singer and Shestack interviews.

announced the merger of Cure Autism Now:
Autism Speaks, “Autism Speaks and the National Alliance for Autism Research.”

surpassed anything a private charity:
Grant statistics from Autism Speaks annual reports available at
autismspeaks.org
.

CHAPTER 42: A STORY UNRAVELS

Written by a pair of American vaccine researchers:
Robert T. Chen and Frank DeStefano, “Vaccine Adverse Events: Causal or Coincidental?”
Lancet
351 (1998): 611–12.

researcher named Brent Taylor:
Brent Taylor et al., “Autism and Measles, Mumps, and Rubella Vaccine: No Epidemiological Evidence for a Causal Association,”
Lancet
353 (1999): 2026–29.

a study out of California:
L. Dales, S. J. Hammer, and N. J. Smith, “Time Trends in Autism and in MMR Immunization Coverage in California,”
Journal of the American Medical Association
285, no. 9 (2001): 1183–85.

Brian Deer was an investigative reporter:
A significant portion of Deer’s work can be found online at
briandeer.com
.

thought to ask Deer:
Author interview with Brian Deer. Our account of Deer’s legwork also draws upon Deer’s own detailed account submitted for legal purposes when he was named a defendant in a libel suit, ultimately dismissed, brought by Andrew Wakefield. Titled “Amended Declaration of Brian Deer in Support of Defendants’ Anti-Slapp Motion to Dismiss,” it can be found online at
http://briandeer.com/solved/slapp-amended-declaration.pdf
.

“I believe that this paper”:
Brian Deer, “Revealed: MMR Research Scandal,”
Sunday Times
, February 22, 2004.

they publicly retracted:
Simon H. Murch et al., “Retraction of an Interpretation,”
Lancet
363, no. 9411 (2004): 750.

The Lancet
’s editor declared:
Quoted by Brian Deer, “MMR: The Truth Behind the Crisis,”
Sunday Times
, February 22, 2004.

“mixing spin and science”:
Fiona Macrae and David Wilkes, “Damning Verdict on MMR Doctor: Anger as GMC Attacks ‘Callous Disregard’ for Sick Children,”
Daily Mail
, January 29, 2010.

“matter of urgency”:
David Hughes and Jenny Hope, “MMR: The Betrayal of These Tragic Parents,”
Daily Mail
, February 24, 2004.

“His credibility lies in ruins”:
Editorial Board, “Doctor’s Secret,”
Sun
, February 23, 2004.

“increasingly isolated man”:
Jeremy Laurance, “A Doctor, the Distinguished Journal, and a Scare That Need Never Have Happened,”
Independent on Sunday
, February 22, 2004.

“urgent need now is for more real study”:
“This Carefully Orchestrated Campaign Must Not Be Allowed to Stifle Real Debate on MMR,”
Independent
, February 24, 2004.

“until the mysteries of autism are fully explained”:
“Doctor’s Secret.”

“He is not an accountant”:
“Another New Twist in MMR Controversy,”
Bath Chronicle
, February 24, 2004.

“There has been talk of an inquiry”:
Liam Mcdougall, “MMR: Wakefield Welcomes Probe,”
Sunday Herald
, February 22, 2004.

critics faulted the article:
See, for example, Seth Mnookin,
The Panic Virus: The True Story Behind the Vaccine-Autism Controversy
(New York: Simon & Schuster, 2011).

Salon
issued a full retraction:
Salon
’s explanation for retracting can be found at
www.salon.com/2011/01/16/dangerous_immunity/
.

Senate probe into the alleged plot:
US Senate Committee on Health, Education, Labor and Pensions, “Thimerosal and Autism Spectrum Disorders: Alleged Misconduct by Government Agencies and Private Entities,” Executive Summary, September 2007.

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
.