Read In a Different Key: The Story of Autism Online
Authors: John Donvan,Caren Zucker
Tags: #History, #Psychology, #Autism Spectrum Disorders, #Psychopathology
“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 extreme 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
.
pounding on the lectern:
The scene was vividly recalled by
Independent
journalist Jeremy Laurance, in interview with authors, and in Jeremy Laurance, “I Was There When Wakefield Dropped His Bombshell,”
Independent
, January 29, 2010.
“It’s a moral issue for me”:
Jeremy Laurance, “Health: Not Immune to How Research Can Hurt; Jeremy Laurance Talks to the Man at the Centre of the Controversy over the MMR Vaccine,”
Independent
, March 3, 1998.
storied history of vaccine skepticism:
In 1885, for example, 100,000 people marched against a mandatory program of vaccination for smallpox in the city of Leicester.
they were a fringe:
A systematic survey published in 2007 discovered a scattering of small “vaccine skeptical” organizations, with membership enrollments as small as 60 people, and none larger than 2,000. See P. Hobson-West, “ ‘Trusting Blindly Can Be the Biggest Risk of All’: Organised Resistance to Childhood Vaccination in the UK,”
Sociology of Health and Illness
29, no. 2 (2007): 198–215.
immunization rates above 90 percent:
See Figure 2 in Dan Anderberg, Arnaud Chevaliera, and Jonathan Wadsworth, “Anatomy of a Health Scare: Education, Income and the MMR Controversy in the UK,”
Journal of Health Economics
30, no. 3 (2011): 520.
Britain’s program was not mandatory:
G. L. Freed, “Vaccine Policies Across the Pond: Looking at the U.K. And U.S. Systems,”
Health Affairs
24, no. 3 (2005): 755–57.
most ardent supporters acknowledge:
See, for example, the statement “Vaccines can and do cause harm” in G. A. Poland and R. M. Jacobson, “Understanding Those Who Do Not Understand: A Brief Review of the Anti-Vaccine Movement,”
Vaccine
19, no. 17–19 (2001): 2440–45.
some adverse effects will occur:
An excellent discussion of complex practicalities and politics of this cost-benefit balance can be found in Arthur Allen,
Vaccine
(New York: W. W. Norton & Company, 2008).
ever really listened to them:
More than a decade later, the families still made this assertion. See, for example, Fiona Macrae and David Wilkes, “Damning Verdict on MMR Doctor: Anger as GMC Attacks ‘Callous Disregard’ for Sick Children,”
Daily Mail
, January 29, 2010.
“frankly alarmed by suggestions”:
Sarah Boseley, “Jab Warning ‘Wrong; WHO Chief Attacks Doctors over Claim of Vaccine Link with Autism,”
Guardian
, March 12, 1998.
provided numbers as well as an animated graphic:
ITN report, Independent Television News, “MMR Vaccine: Autism Link Story,” February 26, 1998, reference number BSP270298055,
www.itn.source.com
.
“advising parents against”:
Sarah Boseley, “MMR Vaccination Fears ‘Not Justified’; No Evidence of Link to Autism or Bowel Disease, Scientists Say,”
Guardian
, March 25, 1998.
Tony Blair stumbled:
Sarah Womack, “Blair Silent over Leo’s MMR Jab,”
Telegraph
, December 21, 2001.
scores of them:
See, for example, A. J. Wakefield, “Enterocolitis in Children with Developmental Disorders,”
American Journal of Gastroenterology
95, no. 9 (2000): 2285–95.
Wakefield resigned his position:
Lorraine Fraiser, “Anti-MMR Doctor Is Forced Out,”
Telegraph
, December 2, 2001.
he told
The Lancet:
Sarah Ramsay, “Controversial MMR-Autism Investigator Resigns from Research Post,”
Lancet
358, no. 9297 (December 8, 2001): 1972.
“I’m not going to whinge”:
Lucy Johnston, “US Research on Controversial Vaccine May Vindicate Consultant Who Was Forced to Resign; New Tests Back Expert Who Sounded Alarm over Triple Jab for Children,”
Sunday Express
, December 9, 2001.
fallen to 79 percent:
Maxine Frith, “Measles Alert in MMR Crisis,”
Evening Standard
, July 3, 2002.
“a question mark still hangs”:
Linda Steel, “Parents: ‘It Is Not About the Science. It’s About Belief’: Andrew Wakefield—the Doctor Who First Linked MMR and Autism—Has Resigned. But Does That Mean He Was Wrong About the Vaccine?”
Guardian
, December 5, 2001.
made into a feature film:
Hear the Silence
, directed by Tim Fywell, Channel 5 (UK), original airdate December 9, 2002.
chief witness was Andrew Wakefield:
Wakefield’s testimony in “Autism: Present Challenges, Future Needs—Why the Increased Rates?”
Hearing Before the Committee on Government Reform
, House of Representatives, April 6, 2000.
at yet another vaccine hearing:
“Mercury in Medicine—Are We Taking Unnecessary Risks?”
Hearing Before the Committee on Government Reform
, House of Representatives, July 18, 2000.
Since the 1930s, mercury had been added:
These accounts of the history of the development of thimerosal can be found in the July 18, 2000, committee report cited above, and in Paul Offit,
Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure
(New York: Columbia University Press, 2008), 96–97.
more than thirty separate vaccines:
Anne M. Hurley, Mina Tadrous, and Elizabeth S. Miller. “Thimerosal-Containing Vaccines and Autism: A Review of Recent Epidemiologic Studies,”
Journal of Pediatric Pharmacology and Therapeutics
15, no. 3 (July–September 2010): 173.
warrant an alarm call:
The US Food and Drug Administration makes this point, in publishing and updating guidelines on safe levels of mercury in food consumed. See, for example, the pamphlet “Mercury in Fish: Cause for Concern?” 1995, Food and Drug Administration, downloadable at
http://www.fda.gov/OHRMS/DOCKETS/ac/02/briefing/3872_Advisory%207.pdf
.
60 micrograms of methylmercury:
Calculation based on mean amount of methylmercury—0.035 ppm—reported in canned albacore tuna by the US Food and Drug Administration for the years 1990–2010, in the online publication “Mercury Levels in Commercial Fish and Shellfish (1990–2010),”
www.fda.gov
.
warnings about tuna:
See, for example: “Fish: What Pregnant Women and Parents Should Know,” draft updated June 2014, FDA and EPA,
http://www.fda.gov/Food/FoodborneIllnessContaminants/Metals/ucm393070.htm
.
several thousand Iraqis:
F. Bakir et al., “Methylmercury Poisoning in Iraq,”
Science
181, no. 4096 (July 1973): 230–41.
0.1 micrograms per kilogram:
“How People Are Exposed to Mercury,” United States Environmental Protection Agency online circular, December 29, 2014,
http://www.epa.gov/mercury/exposure.htm
.
25 micrograms of mercury:
“Uproar over a Little-Known Preservative, Thimerosal, Jostles U.S. Hepatitis B Vaccination Policy,” Hepatitis Control Report, Summer 1999, 4:2.
http://www.hepatitiscontrolreport.com/articles.html
.
as the mercury found in food:
The methylmercury found in the food chain is molecularly different from the ethylmercury produced when thimerosal is metabolized by the body. A Centers for Disease Control online guide explains: “Ethylmercury is formed when the body breaks down thimerosal. The body uses ethylmercury differently than methylmercury; ethylmercury is broken down and clears out of the blood more quickly.”
http://www.cdc.gov/vaccinesafety/Concerns/thimerosal/thimerosal_faqs.html#b
.
began to tally up:
Hepatitis Control Report, op. cit.
soon, more shots were added:
Ibid.
187 micrograms:
Ibid.
immunization experts decided:
An account of the scientists’ reasoning and actions can be found in Arthur Allen, “The Not-So-Crackpot Autism Theory,”
New York Times Magazine
, November 10, 2002.
released coordinated statements:
Statement by Public Health Service carried in “Notice to Readers: Thimerosal in Vaccines: A Joint Statement of the American Academy of Pediatrics and the Public Health Service,”
Morbidity and Mortality Weekly Report
, Centers for Disease Control, July 9, 1999, 48(26): 563–65.
remarks by the academy’s president:
“Press Release: AAP Address FDA Review of Vaccines,” July 14, 1999. Accessed at:
http://www.aap.org/advocacy/archives/julvacc.htm
.
Lyn Redwood might never have suspected:
Author interview with Lyn Redwood. A detailed account of Redwood’s journey can also be found as a main story line in David Kirby,
Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy
(New York: St. Martin’s Press, 2005).
“My worst fears”:
Redwood testimony before House Government Reform Committee Hearing, July 18, 2000.
demanding faster action:
“Cure Autism Now Calls for Removal of Mercury-Based Preservative in Children’s Vaccinations,” PR Newswire, July 17, 2001.
nonprofit called SafeMinds:
The name is an acronym for “Sensible Action for Ending Mercury-Induced Neurological Disorders.”