by John Donvan
1993
Working with speech clinician Janyce Boynton, Betsy Wheaton, a nonverbal sixteen-year-old girl with severe autism, uses FC to accuse her family of sexual abuse. Harvard speech pathologist Howard Shane stages a rigorous experiment revealing that Boynton is herself responsible for Betsy’s communications, and that no abuse occurred. Enrollment in FC training courses plummets.
Self-advocate Jim Sinclair delivers a speech titled “Don’t Mourn for Us,” marking the birth of a movement for self-advocacy by people with autism. The speech lays the foundation for a philosophy that opposes attempts to cure autism, later dubbed “neurodiversity.”
Catherine Maurice, the mother of two children with autism, publishes Let Me Hear Your Voice, an account of her children’s recovery from autism using ABA. Demand for ABA explodes.
Karen and Eric London’s son, Zachary, almost two years old, is diagnosed with autism.
1994
The American Psychiatric Association adds Asperger’s disorder to the DSM.
Karen and Eric London, the parents of a child with autism, found the National Alliance for Autism Research (NAAR). It is the first organization to fund biomedical research of autism.
1995
Bernie Rimland founds Defeat Autism Now! (DAN), an offshoot of his Autism Research Institute, to promote nontraditional, biomedical treatments for autism.
Portia Iversen and Jon Shestack, the parents of a child with autism, found Cure Autism Now (CAN), the second organization to raise money to fund biomedical research. Like NAAR, they also lobby for support services for people with autism.
Portia Iversen and Jon Shestack’s son Dov is diagnosed with Pervasive Developmental Disorder. He will later be diagnosed with autism.
Alex Plank, age nine, is diagnosed with Asperger’s syndrome.
1996
Australian sociologist Judy Singer, herself on the spectrum, coins the term neurodiversity and speaks of a neurodiversity movement in her dissertation.
Gary Mayerson initiates legal action to compel the Westchester County Department of Health to pay for his son’s ABA therapy. Mayerson prevails.
1997
NAAR awards its first grants, totaling $150,000, to five scientists researching autism.
CAN launches the Autism Genetic Research Exchange, a bank of DNA samples from families who have children with autism that is made available to all autism researchers.
1998
Andrew Wakefield, a British gastroenterologist, publishes a paper in The Lancet reporting an association between the MMR vaccine, autism, and bowel disease.
Harvey Blume writes about neurodiversity in The Atlantic, arguing that it “may be every bit as crucial for the human race as biodiversity is for life in general.” It is the first time the term has appeared in a mainstream publication.
1999
NAAR establishes a bank of brain tissue from children with autism for the purposes of anatomical research.
The California Department of Disability Services reports that the number of people receiving autism services has increased by 273 percent since 1987. The numbers spark fears of an autism epidemic.
The American Academy of Pediatrics and the Public Health Service recommend that thimerosal be removed from vaccines, and that pediatricians begin using thimerosal-free vaccines whenever possible. At the same time, the two organizations assert the lack of evidence that thimerosal is harmful. The move causes confusion and increases public fears about vaccines.
2000
A group of parents found SafeMinds, an organization demanding more research into vaccine safety.
Republican representative Dan Burton, chairman of the Government Reform Committee, holds hearings investigating the link between vaccines and autism. He urges the National Institutes of Health and the Centers for Disease Control to treat autism as an epidemic.
2001
NAAR and CAN cosponsor the first International Meeting for Autism Research, an event that draws autism researchers from around the world. The annual event grows to become the largest of its kind.
As a result of the controversy his work is causing, Andrew Wakefield is made to resign his position at the Royal Free Hospital.
2003
Activist Michael John Carley, diagnosed with Asperger’s syndrome shortly after his son receives the diagnosis, forms the Global and Regional Asperger Syndrome Partnership organization (GRASP) to support people on the spectrum and fight the stigma surrounding autism.
2004
Major autism organizations begin publicizing 1 in 166 as the prevalence rate of autism.
The Institute of Medicine issues a report finding that the evidence does not support a causal relationship between thimerosal in vaccines and autism.
Investigative reporter Brian Deer publishes his first exposé of financial conflicts of interest surrounding the work described in Andrew Wakefield’s Lancet paper. He will pursue the story for the next seven years.
High-schooler Alex Plank, diagnosed with Asperger’s syndrome as a child, creates Wrong Planet, an online resource and community for people with autism and Asperger’s.
2005
Journalist David Kirby’s Evidence of Harm is published. The book is a dramatic account sympathetic to the parents fighting to prove a link between vaccines and autism.
Bob and Suzanne Wright announce the formation of Autism Speaks, which aims to educate the public, fund research, increase government involvement, and help find a cure for autism. NAAR merges with the new organization.
2006
CAN merges with Autism Speaks.
The Combating Autism Act is passed, authorizing a billion dollars for autism research.
Activist Ari Ne’eman, who himself has Asperger’s, founds the Autistic Self-Advocacy Network to ensure that the voices of people on the autism spectrum are heard in policy debates.
2007
The “vaccine trials” begin in the US Court of Federal Claims. Nearly five thousand families seek compensation for alleged injuries to their children. They argue that their children’s autism was caused by vaccines.
The New York University Child Study Center launches its “Ransom Notes” campaign, depicting autism as a kidnapper of children, in New York City. Ari Ne’eman leads a successful fight to get the campaign pulled.
2009
Alison Singer, executive vice president of Autism Speaks, resigns over the group’s continued support of research into whether vaccines can be linked to autism. She establishes the Autism Science Foundation to pursue biomedical research into possible causes and medical treatments for autism.
Eric London, founder of NAAR, resigns from the board of Autism Speaks, also at odds with the group’s position on research into autism.
In the US Court of Federal Claims, the special masters rule in the case brought by the family of Michelle Cedillo. In this first of a series of test cases of the vaccine theory, they find no connection between vaccines and autism. The result will be the same for all subsequent cases.
2010
The Lancet retracts Andrew Wakefield’s 1998 article, following years of investigation that point to fraud on Wakefield’s part. Wakefield is stripped of his medical license.
At a conference to honor Hans Asperger, Herwig Czech, an Austrian historian, surprises those assembled by revealing that Asperger likely had a role in sending disabled children to the Spiegelgrund facility during World War II, where they were murdered. The news does not travel to the English-speaking world.
HBO’s movie Temple Grandin wins seven Emmy Awards.
2013
Asperger’s disorder is dropped from the DSM-5. All recognized clusters of autistic behaviors, including those previously attributed to Asperger’s, are now subsumed under the heading Autism Spectrum Disorder.
Donald Triplett, the first person diagnosed with autism, turns eighty.
NOTES
CHAPTER 1: DONALD
In 1935, five Canadian: This and other details about the Quintland
phenomenon are from Pierre Berton, “The Dionne Years,” New York Times Magazine, April 23, 1978.
“Annette and Cecile make purple”: Leo Kanner, “Autistic Disturbances of Affective Contact,” Nervous Child 2 (1943): 220. Donald’s early childhood behaviors were recorded by clinicians and by his parents and relayed by Kanner.
“Semicolon, capital, twelve”: Ibid., 221.
“hopelessly insane”: Letter from Leo Kanner to Mary Triplett, September 17, 1939, Johns Hopkins Hospital medical archives. The records were given to the Triplett family in December 2007.
raised to get the best out of life: Biographical information on Mary and Beamon Triplett was provided in author interviews with the Triplett family. A thumbnail account of their ancestry, education, and civic activities can also be found scattered through the social pages of the Scott County Times in the 1950s. See Scott County History Book Committee, History of Scott County, Missouri: History & Families (Paducah, KY: Turner, 2003).
“The Star Spangled Banner”: Pat Putnam, “Sports Scrapbook,” Sarasota Journal, September 13, 1957; Angela Christine Stuesse, “Globalization ‘Southern Style’: Transnational Migration, the Poultry Industry, and Implications for Organizing Workers Across Difference,” PhD diss., University of Texas at Austin, 2008.
he was the former mayor’s son: Scott County History Book Committee, History of Scott County, Missouri, Paducah, KY: Turner, 2003.
talked a little early: Hospital records of Donald Grey Triplett, the Harriet Lane Home for Invalid Children at the Johns Hopkins Hospital, provided to the authors by the Triplett family. (Note that the Harriet Lane Home closed in 1972.) Summary report from Dr. Leo Kanner.
could not feed himself: Kanner summary report.
memorized the twenty-five questions: Kanner, “Autistic Disturbances,” 217.
“Say ‘Eat it or I won’t’ ”: Ibid., 219.
facility known as the Preventorium: The Preventorium building still stands today, serving as a storage facility on the grounds of what is now the Boswell Regional Health Center. Our account of its operation and the texture of life inside its walls comes from The Mississippi State Sanatorium: A Book of Information About Tuberculosis and Its Treatment in Mississippi, 1939, located at the Department of Archives and History, Jackson, Mississippi; author interview with former child resident Cecile Snider, who lived in the Preventorium in the early 1930s; and author interview with David Tedford, director of vocational services at the Boswell Regional site.
CHAPTER 2: A MENACE TO SOCIETY
You have overstimulated him: A summary medical history of Donald that was discovered in the archives at Johns Hopkins and obtained by the Triplett family cites the opinion of the Triplett family doctor, who “felt the family had overstimulated the child” and advised change of environment.
Donald stopped eating: Ibid.
resident of the Preventorium: Although the minimum age of the Preventorium was four, Donald was permitted to enter at the age of three. He remained at the Preventorium three to four times as long as the average resident.
were designated, in 1902: “Report of Committee on Classification of Feeble-Minded,” Journal of Psycho-Asthenics 15 (1910): 61.
five name changes in its history: “Brief History of the Association,” Approved Board of Directors, AAID Chapter Leadership Manual, October 12, 2011, 1. The AAID explains its historical evolution at http://aaidd.org/intellectual-disability.
bestselling book on parenting: Benjamin Spock, The Common Sense Book of Baby and Child Care (New York: Duell, Sloan, and Pearce, 1946), 502.
“long years of suffering”: This and all other details of Petey Frank’s life are from his father’s account, John P. Frank, My Son’s Story (London: Sidgwick & Jackson, 1952).
“cast a blight”: Ibid., 100.
Petey died there in 2010: John Peter Frank obituary, ObitsForLife, http://www.obitsforlife.com/obituary/52773/Frank-John.php.
“happier if he stays at home”: Spock, Common Sense Book, 503.
“faded away physically”: This and other details of Donald’s decline come from Donald Triplett’s hospital records, the Harriet Lane Home for Invalid Children and Johns Hopkins, provided to authors by the Triplett family.
“not paying attention to anything”: Ibid.
“he had there his worst phase”: Ibid.
“KELLEYS WIN IN ‘FITTER FAMILIES’ CONTEST”: Savannah Press, November 6, 1924.
“testing the Joneses, Smiths and the Johnsons”: As quoted in Jonathan Peter Spiro, Defending the Master Race: Conservation, Eugenics and the Legacy of Madison Grant (Burlington: University of Vermont Press, 2008), 185.
examined by an expert team: Details of the testing criteria available from images of scorecards viewable in “Fitter Family Contests,” Image Archive on the American Eugenics Movement, http://www.eugenicsarchive.org/eugenics/list2.pl. The text of the three signs can also be read here in original photographs of the Fitter Family contests.
for the good of society: “Fitter Families for Future Firesides: A Report of the Eugenics Department of the Kansas Free Fair, 1920–1924,” prepared by the Kansas Bureau of Child Research (Eugenics Committee of the United States of America, 1924), http://www.eugenicsarchive.org/html/eugenics/essay_6_fs.html.
a scientific, political, and philosophical movement: Our discussion of the pervasiveness and respectability achieved by the eugenics movement in America’s upper classes rests largely on the superb account of this period provided by Spiro, Defending the Master Race.
a brand-new science: Madison Grant, The Passing of the Great Race (Abergele, UK: Wermod and Wermod Publishing Group, 2012).
“the broken, the mentally crippled”: Ibid., 77.
“facts our people most need”: Theodore Roosevelt commends Madison Grant’s book, The Passing of the Great Race (New York: Scribner’s, 1916).
His name was Adolf Hitler: Spiro, Defending the Master Race, 372.
“increasing race of morons”: Ibid., 192.
Mississippi’s sterilization law: The 1933 sterilization figures for Mississippi, Virginia, and California are from “Sterilization Laws,” Image Archive on the American Eugenics Movement, http://www.eugenicsarchive.org/eugenics/list2.pl.
“insanity, feeblemindedness”: Image no. 948, “Sterilization Laws,” Image Archive on the American Eugenics Movement, http://www.eugenicsarchive.org/eugenics/list2.pl.
bother an editorial writer: Unsigned editorial, Delta Democrat Times, Greenville, Mississippi, January 11, 1939.
“the agony of living”: Foster Kennedy, “The Problem of Social Control of the Congenital Defective: Education, Sterilization, Euthanasia,” American Journal of Psychiatry 99 (July 1942): 13–16.
“we thus exonerate ourselves”: Leo Kanner, “Exoneration of the Feebleminded,” American Journal of Psychiatry 99 (July 1942): 17–22.
CHAPTER 3: CASE 1
top child psychiatrist: This and the subsequent biographical details about Kanner’s early years are from Eric Schopler, Stella Chess, and Leon Eisenberg, “Our Memorial to Leo Kanner,” Journal of Autism and Developmental Disorders 11, no. 3 (1981): 257–69.
since psychiatry had discovered childhood: Kanner covered the early history of his field succinctly in a talk later published as “Historical Perspective on Developmental Deviations” in Psychopathology and Child Development (New York: Springer, 1976), 7–17.
hit by a train: “Doctor Misses Death,” Halifax Herald, September 6, 1937.
learned the specialty: James W. Trent, Inventing the Feeble Mind: A History of Mental Retardation in the United States (Berkeley: University of California Press, 1994).
He also worked for years: Leo Kanner, unpublished autobiography, American Psychiatric Association Archives, Arlington, Virginia.
Kanner blew the whistle: “Charge of Freeing Insane Is Repeated, Hopkins Doctor Says Girls Were Let Go to Provide Fees and Cheap Labor,” Baltimore Sun, May 14, 1937.
“The fact that a child”: Letter from Leo Kanner to James Lamphier, June 23, 1938, American Psychiatric Association Archives.
“a desirable procedure”: Leo Kanner, “Exoneration of the Feebleminded,” American Journal of Psychiatry 99, no. 1 (July 1942): 17–22.
filled her notepad with shorthand: Author interview with Oliver Triplett.
“He never seems glad”: The contents of Beamon Triplett’s letter are preserved only in the form of excerpts quoted by Leo Kanner in “Autistic Disturbances of Affective Contact,” Nervous Child 2 (1943), 217–22.
experiment was deemed a failure: Jimmy was not, after all, returned to the orphanage. He was adopted by acquaintances of the Tripletts, who bonded with him immediately upon seeing him. He lived in Forest the rest of his life.
“let him alone”: Leo Kanner, “Follow-up Study of Eleven Autistic Children Originally Reported in 1943,” Journal of Autism and Childhood Schizophrenia 1, no. 2 (1971): 120.
“glandular disease”: Ibid., 121.
“referring to the foot on the block as ‘umbrella’ ”: Kanner, “Autistic Disturbances,” 220.
“He wandered about smiling”: Ibid., 219.
“a hopelessly insane child”: Letter from Leo Kanner to Mary Triplett, September 17, 1939, Johns Hopkins Hospital medical archives. The records were given to the Triplett family in December 2007.
“the good sense you are using”: Ibid.
Kanner wrote back to reassure her: Letter from Leo Kanner to Mary Triplett, September 28, 1942, Johns Hopkins Hospital medical archives.
Kanner’s first recorded use of “autistic”: As this book was nearing publication, journalist Steve Silberman published his book Neurotribes. In it he reported his original finding that a Czech diagnostician named Georg Frankl, who worked under Kanner in Baltimore in this period, had previously worked alongside the Austrian pediatrician Hans Asperger in Vienna. Silberman contends that through Frankl, and through Kanner’s own reading of German-language medical journals, Kanner would have known that Asperger had already used the term autistic as early as 1938. We find Silberman’s discovery of Frankl’s connection to both men intriguing. Moreover, his theory that Kanner built aspects of Asperger’s thinking into his own model of autism, without crediting him, cannot be ruled out as a possibility. However, it seems just as plausible that Kanner, like Asperger, borrowed the term autistic from Swiss psychiatrist Eugen Bleuler, who famously used it in 1911 to describe behaviors he saw in schizophrenia. In a 1965 lecture, Kanner said exactly that. In addition, while both men called the cases they studied “autistic,” they focused on different populations of children, and the conditions they described diverged in several important respects.