by Eric Garcia
she tells the crowd: Reporting by the author, February 9, 2020.
tells me later: Jessica Benham, interview by the author, February 9, 2020.
a symptom of childhood schizophrenia: Bonnie Evans, “How Autism Became Autism,” History of the Human Sciences 26 (3): 3–31, https://doi.org/10.1177/0952695113484320.
“schizophrenic reactions occurring before puberty”: Ellen Herman, “DSM-I (1952),” Autism History Project, 2019, https://blogs.uoregon.edu/autismhistoryproject/topics/autism-in-the-dsm/dsm-i-1952/.
symptom of prepuberty schizophrenia: Ellen Herman, “DSM-II (1968),” Autism History Project, 2019, https://blogs.uoregon.edu/autismhistoryproject/topics/autism-in-the-dsm/.
“onset before 30 months of age”: Ellen Herman, “‘DSM-III (1980),’” Autism History Project, 2019, https://blogs.uoregon.edu/autismhistoryproject/topics/autism-in-the-dsm/dsm-iii-1980/.
“childhood onset pervasive developmental disorder”: Bryan H. King et al., “Update on Diagnostic Classification in Autism,” Current Opinion in Psychiatry 27 (2): 105–9, https://doi.org/10.1097/yco.0000000000000040.
“pervasive developmental disorder not otherwise specified”: Lina Zeldovich, “The Evolution of ‘Autism’ as a Diagnosis, Explained,” Spectrum News, May 29, 2018, https://www.spectrumnews.org/news/evolution-autism-diagnosis-explained/.
but the criteria are not met: James Coplan, Making Sense of Autistic Spectrum Disorders: Create the Brightest Future for Your Child with the Best Treatment Options (New York: Bantam Books, 2010), 374.
“Autistic Disorder”: Ellen Herman, “Diagnostic Criteria for Autistic Disorder,”Autism History Project, 2019, https://blogs.uoregon.edu/autismhistoryproject/topics/autism-in-the-dsm/dsm-iii-r-1987/.
number of symptoms from eight to six: Ellen Herman, “‘DSM-IV’ (1994) and ‘DSM-IVR’ (2000),” Autism History Project, 2019, https://blogs.uoregon.edu/autismhistoryproject/topics/autism-in-the-dsm/dsm-iv-1994-and-dsm-ivr-2000/.
Hans Asperger: Silberman, NeuroTribes, 82–139.
existed on a “continuum”: Elon Green, “Rewriting Autism History,” Atlantic, August 17, 2015, https://www.theatlantic.com/health/archive/2015/08/autism-history-aspergers-kanner-psychiatry/398903/.
argued that autism existed on a spectrum: Christopher Gilberg, “Lorna Wing OBE, MD, FRCPsych Formerly Psychiatrist and Physician, Social Psychiatry Unit, Institute of Psychiatry, King’s College London, Co-Founder of the UK National Autistic Society,” BJPsych Bulletin 39 (1): 52–53, https://doi.org/10.1192/pb.bp.114.048900.
even referred children to a clinic: Herwig Czech, “Hans Asperger, National Socialism, and ‘Race Hygiene’ in Nazi-Era Vienna,” Molecular Autism 9, no. 1 (April 19, 2018), https://doi.org/10.1186/s13229-018-0208-6.
translated Asperger’s work: Silberman, NeuroTribes, 349.
her seminal 1981 article: Lorna Wing, “Asperger’s Syndrome: A Clinical Account,” Psychological Medicine 11, no. 1 (February 1981): 115–29, https://doi.org/10.1017/s0033291700053332.
restrictive and repetitive behaviors: Herman, “‘DSM-IV’ (1994) and ‘DSM-IVR’ (2000).”
autism spectrum disorder: Hyman, “New DSM-5 Includes Changes to Autism Criteria.”
“restricted, repetitive patterns of behavior”: Herman, “Autism in the DSM, 1952–2013.”
a surge in autism diagnoses: Morton Gernsbacher, Michelle Dawson, and H. Hill Goldsmith, “Three Reasons Not to Believe in an Autism Epidemic,” Current Directions in Psychological Science (April 1, 2005), https://pubmed.ncbi.nlm.nih.gov/25404790/.
people who went undetected in the past: Judith S. Miller et al., “Autism Spectrum Disorder Reclassified: A Second Look at the 1980s Utah/UCLA Autism Epidemiologic Study,” Journal of Autism and Developmental Disorders 43, no. 1 (June 13, 2012): 200–210, https://doi.org/10.1007/s10803-012-1566-0.
Americans with Disabilities Act: George H. W. Bush, “Remarks by President George H. W. Bush at the ADA Signing Ceremony,” U.S. Department of Justice, Civil Rights Division, July 26, 1990, https://www.ada.gov/ghw_bush_ada_remarks.html.
barely mentioned autism during deliberations: Pitney, The Politics of Autism, 24.
the Individuals with Disabilities Education Act: Pitney, The Politics of Autism, 24.
“establish autism definitively as a developmental disability”: Pitney, The Politics of Autism, 24.
IDEA mandated that students with disabilities: “Sec. 300.101 Free Appropriate Public Education (FAPE),” Individuals with Disabilities Education Act, U.S. Department of Education, May 3, 2017, https://sites.ed.gov/idea/regs/b/b/300.101.
schools had to report the number of autistic students they served: Gernsbacher, Dawson, Goldsmith, “Three Reasons Not to Believe in an Autism Epidemic,” 4–5.
crawled up the steps: Lauren Lantry, “On 30th Anniversary of Disability Civil Rights Protest, Advocates Push for More,” ABC News, March 12, 2015, https://abcnews.go.com/US/30th-anniversary-disability-civil-rights-protest-advocates-push/story?id=69491417.
“as many as one in one hundred and sixty-six children are diagnosed”: “Steven Tyler Joe Perry Autism Ad,” 2008, YouTube/AeroCarol, https://www.youtube.com/watch?v=-fMIVRYKXfg.
the regalia of studs and leather: Alexis Petridis, “Judas Priest’s Rob Halford: ‘I’ve Become the Stately Homo of Heavy Metal,’” Guardian, July 3, 2014, https://www.theguardian.com/music/2014/jul/03/judas-priest-rob-halford-quentin-crisp-interview-redeemer-of-souls.
cofounded the Congressional Autism Caucus: Pitney, The Politics of Autism, 131.
“they needed help”: Mike Doyle, interview with the author, February 9, 2020.
founded the organization Autism Speaks: Jane Gross and Stephanie Strom, “Autism Debate Strains a Family and Its Charity,” New York Times, June 18, 2007, https://www.nytimes.com/2007/06/18/us/18autism.html.
“dedicated to funding global biomedical research”: Debra Muzikar, “Autism Speaks Revamps Its Mission Statement,” Art of Autism, October 15, 2016, https://the-art-of-autism.com/autism-speaks-revamps-its-mission-statement/.
quickly gained national prominence: Pitney, The Politics of Autism, 31.
“I am proud to sign this bill into law”: George W. Bush “President’s Statement on Combating Autism Act of 2006,” White House Archives, December 19, 2006, https://georgewbush-whitehouse.archives.gov/news/releases/2006/12/20061219-1.html.
many of his subjects lacked “warm-hearted” parents: Kanner, “Autistic Disturbances,” 250.
“lofty abstractions that little room is left”: Leo Kanner, “Problems of Nosology and Psychodynamics of Early Infantile Autism,” American Journal of Orthopsychiatry 19, no. 3 (1949): 422, https://doi.org/10.1111/j.1939-0025.1949.tb05441.x.
he’d observed only one mother fully embrace her son: Kanner, “Problems of Nosology,” 422.
“They were kept neatly in refrigerators which did not defrost”: Kanner, “Problems of Nosology,” 425.
further popularized the concept: Silberman, NeuroTribes, 207.
“I state my belief”: Roy Richard Grinker, Unstrange Minds: Remapping the World of Autism (New York: Basic, 2007).
“a state of mind”: Bruno Bettelheim, The Empty Fortress: Infantile Autism and the Birth of the Self (New York: Free Press, 1972), 68.
“helped keep autism off the agenda”: Pitney, The Politics of Autism, 20.
thus didn’t require broader policy solutions: Pitney, The Politics of Autism, 20.
absolve parents of blame: Silberman, NeuroTribes, 301.
the Developmental Disabilities Act: Ruth Christ Sullivan, “The Politics of Definitions: How Autism Got Included in the Developmental Disabilities Act,” Journal of Autism and Developmental Disorders 9, no. 2 (1979): 221–31, https://doi.org/10.1007/bf01531536.
“persons with developmental disabilities”: “Developmental Disabilities Assistance and Bill of Rights Act,” October 4, 1975, https://uscode.house.gov/statutes/pl/94/103.pdf.
“the establishment of many services for our children”: Sullivan, “Th
e Politics of Definitions,” 221.
Defeat Autism Now!: Silberman, NeuroTribes, 334.
the use of vitamin B6: Benedict Carey, “Bernard Rimland, 78, Scientist Who Revised View of Autism, Dies,” New York Times, November 28, 2006, http://nytimes.com/2006/11/28/obituaries/28rimland.html.
intravenous use of the hormone secretin: Rosie Mestel, “Parents Look to Unproven Therapies to Solve Autism,” Los Angeles Times, March 12, 2001, https://www.latimes.com/archives/la-xpm-2001-mar-12-he-36611-story.html.
“autism world has trailed”: Ari Ne’eman, interview with the author, 2019.
“as long as he lives”: Joanne Kaufman, “Ransom-Note Ads About Children’s Health Are Canceled,” New York Times, December 20, 2007, https://www.nytimes.com/2007/12/20/business/media/20child.html.
ditched the toxic idea: Joseph P. Shapiro, No Pity: People with Disabilities Forging a New Civil Rights Movement (New York: Three Rivers, 1994), 21–225.
“You had a greater willingness to support institutionalization”: Ari Ne’eman, interview with the author, 2019.
examined coverage of autism: Clarke, Juanne Nancarrow, “Representations of Autism in US Magazines for Women in Comparison to the General Audience,” Journal of Children and Media, Volume 6, Number 2, 2011 182–97, https://doi.org/10.1080/17482798.2011.587143.
drugged and stabbed repeatedly: “Film Provides Glimpse into Life of Autistic Teen Killed by His Mother,” CBS News, August 30, 2013, https://www.cbsnews.com/news/film-provides-glimpse-into-life-of-autistic-teen-killed-by-his-mother/.
pleaded guilty to involuntary manslaughter: John Garcia, “Mother, Godmother Who Killed Autistic Teen Released from Prison,” ABC7 Chicago, December 14, 2016, https://abc7chicago.com/news/mother-godmother-who-killed-autistic-teen-released-from-prison/1656353/.
graduated electronic decelerator (GED): Patricia M. Rivera et al., “Use of Skin-Shock at the Judge Rotenberg Center,” http://www.effectivetreatment.org/using_graduated.html.
wrote that the shocks violated the UN’s conventions: Juan Méndez, “Report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment,” United Nations Human Rights Office of the High Commissioner, March 4, 2013, https://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53.Add.4_Advance_version.pdf.
Matthew Israel, the center’s founder: Jen Quraishi, “‘School of Shock’ Founder Forced to Resign,” Mother Jones, May 27, 2011, https://www.motherjones.com/politics/2011/05/judge-rotenberg-forced-resign-school-shocks/.
agreed to five years of probation: Russell Contreras, “Charges Settled in Prank-Call Shock Therapy Case,” Boston.Com, May 25, 2011, http://archive.boston.com/news/local/massachusetts/articles/2011/05/25/charges_settled_in_prank_call_shock_therapy_case/.
“present an unreasonable and substantial risk”: “FDA Takes Rare Step to Ban Electrical Stimulation Devices for Self-Injurious or Aggressive Behavior,” U.S. Food and Drug Administration, March 4, 2020, https://www.fda.gov/news-events/press-announcements/fda-takes-rare-step-ban-electrical-stimulation-devices-self-injurious-or-aggressive-behavior.
a parent named Eddie Sanchez: Paul Kix, “The Shocking Truth,” Boston, June 17, 2008, https://www.bostonmagazine.com/2008/06/17/the-shocking-truth/.
Bernard Rimland praised: Silberman, NeuroTribes, 419.
measles-mumps-rubella vaccine: Pitney, The Politics of Autism, 25.
paid by attorneys representing parents of children: Pitney, The Politics of Autism, 51.
lost his medical license in 2010: Alice Park, “Doctor Behind Vaccine-Autism Link Loses License,” Time, May 24, 2010, https://healthland.time.com/2010/05/24/doctor-behind-vaccine-autism-link-loses-license/.
Wakefield found an audience: Philip J. Hilts, “House Panel Asks for Study of a Vaccine,” New York Times, April 7, 2000, https://www.nytimes.com/2000/04/07/us/house-panel-asks-for-study-of-a-vaccine.html.
shooting a cantaloupe: Mary Ann Akers, “Dan Burton, Protecting the House from Terrorists (Alone),” Washington Post, June 19, 2009, http://voices.washingtonpost.com/sleuth/2009/06/_rep_dan_burton_r-ind.html.
Burton spoke anecdotally: “Autism: Present Challenges, Future Needs—Why the Increased Rates?,” U.S. Government Printing Office, 2001, https://www.govinfo.gov/content/pkg/CHRG-106hhrg69622/html/CHRG-106hhrg69622.htm.
warned that this could cause a dangerous drop: Hilts, “House Panel Asks for Study of a Vaccine.”
Waxman told me in 2019: Henry Waxman, interview with the author, 2019.
hearing on autism: “Funding Autism Research,” C-SPAN, August 5, 2009, https://www.c-span.org/video/?288235-1/funding-autism-research.
he delivered a floor speech in sign language: Tom Harkin, “Senator Tom Harkin American Sign Language Senate Speech,” Google Arts and Culture, July 13, 1990, https://artsandculture.google.com/asset/senator-tom-harkin-american-sign-language-senate-speech-senator-tom-harkin/zwFD2G4XUFGIPA?hl=en.
“I went through a period”: Tom Harkin, interview with the author, 2018.
“the Mercurys”: Jane Gross and Stephanie Strom, “Autism Debate Strains a Family and Its Charity,” New York Times, June 18, 2007, https://www.nytimes.com/2007/06/18/us/18autism.html.
quit the organization in 2009: Meredith Waldman, “Autism’s Fight for Facts: A Voice for Science,” Nature 479 (2011): 28–31, https://doi.org/10.1038/479028a.
“We’ve seen just a skyrocketing autism rate”: Glenn Kessler, “Fact Checking Statements on Vaccines, Including Obama in 2008,” Washington Post, February 5, 2015, https://www.washingtonpost.com/news/fact-checker/wp/2015/02/05/fact-checking-statements-on-vaccines-including-obama-in-2008/.
“We’re still unable to cure diseases like Alzheimer’s or autism”: Barack Obama, “Remarks by the President on the BRAIN Initiative and American Innovation,” Obama White House, April 2, 2013, https://obamawhitehouse.archives.gov/the-press-office/2013/04/02/remarks-president-brain-initiative-and-american-innovation.
delivered an address titled: Jim Sinclair, “Don’t Mourn for Us,” presented at the International Conference on Autism, 1993, https://www.autreat.com/dont_mourn.html.
Autreat, a getaway for autistic people: Silberman, NeuroTribes, 448–50.
was one of the first memoirs by an autistic adult: Sarah Pripas-Kapit, “Historicizing Jim Sinclair’s ‘Don’t Mourn for Us’: A Cultural and Intellectual History of Neurodiversity’s First Manifesto,” Autistic Community and the Neurodiversity Movement (November 2019), 23–39, https://doi.org/10.1007/978-981-13-8437-0_2.
laid the groundwork for future advocates: Jim Sinclair, “Being Autistic Together,” Disability Studies Quarterly 30, no. 1 (2010): https://doi.org/10.18061/dsq.v30i1.1075.
he was reaching out to groups: Ari Ne’eman, interview with the author, 2019.
had petitioned the United Nations: Robert McRuer and Anna Mollow, Sex and Disability (Durham, NC: Duke University Press, 2012), 279.
“The way I saw the work”: Ari Ne’eman, interview with the author, 2019.
as its slogan: “Nothing About Us Without Us! Who We Are & What We Do,” Autistic Self Advocacy Network, April 2019, https://autisticadvocacy.org/wp-content/uploads/2019/04/ASAN-flyer-1-pager-2018.pdf.
firmly declaring its goals: James I. Charlton, Nothing About Us Without Us (Berkeley: University of California Press, 1998).
successfully coordinated with prominent disability rights activists: Silberman, NeuroTribes, 462.
own college campuses: “Autism Campus Inclusion,” Autistic Self Advocacy Network, 2020, https://autisticadvocacy.org/projects/education/aci/.
was appointed by President Barack Obama: “Ari Ne’eman,” Healthpolicy.Fas.Harvard.Edu, 2020, https://healthpolicy.fas.harvard.edu/people/ari-neeman.
and was a public member: “Leadership,” Autistic Self Advocacy Network, 2020, https://autisticadvocacy.org/about-asan/leadership/.
Combating Autism Act: Interagency Autism Coordinating Committee, 2019, “IACC Legislation,” https://iacc.hhs.gov/about-iacc/leg
islation/.
aggressive campaign: “#StopCombatingMe,” Autistic Self Advocacy Network, 2014, https://autisticadvocacy.org/resources/stopcombatingme/.
was reauthorized as the Autism CARES: John J. Pitney, Jr., “Autism and Accountability,” presented at the Prepared for delivery at the 2020 Annual Meeting of the American Political Science Association, September 11, 2020, https://www.scribd.com/document/475658529/Autism-and-Accountability#download.
guest-edited an issue of Wired magazine: “President Obama Guest Edits Wired,” Wired, October 2016, https://www.wired.com/magazine/president-obama-guest-edits-wired/.
“They might be on the spectrum”: Scott Dadich, “Barack Obama Talks AI, Robo Cars, and the Future of the World,” Wired, October 12, 2016, https://www.wired.com/2016/10/president-obama-mit-joi-ito-interview/.
tweeted his support of Trump: Bob Wright, “Go Donald Trump. The Best Choice for All Republicans and All Americans!,” Twitter, April 18, 2016, https://twitter.com/bobwrightnbc/status/722223562900299778.
tried to persuade Wright: Bob Wright and Dianne Mermigas, The Wright Stuff: From NBC to Autism Speaks (New York: Rosetta Books, 2016).
scared away NBC: Eliot Brown, “Remember Trump City?,” Observer, August 5, 2008, https://observer.com/2008/08/remember-trump-city/.
first aired, in 2004: Wright and Mermigas, The Wright Stuff, 145–46.
“bitterly disappointed”: Wright and Mermigas, The Wright Stuff, 313.
Trump did so his first year: Donald Trump, “President Donald J. Trump Proclaims April 2, 2017, as World Autism Awareness Day,” White House, March 31, 2017, https://www.whitehouse.gov/presidential-actions/president-donald-j-trump-proclaims-april-2-2017-world-autism-awareness-day/.
angered many autistic self-advocates: Oliver-Ash Kleine (since came out as nonbinary and changed name), “The White House Turned Blue for ‘Autism Awareness,’ That’s Actually Bad for Autistic People,” Mother Jones, April 17, 2017, https://www.motherjones.com/politics/2017/04/trumps-autism-awareness-effort-not-show-support-autistic-people/.
none of its board members were openly autistic: Melissa Dahl, “A Leading Autism Organization Is No Longer Searching for a ‘Cure,’” Cut, October 18, 2016, https://www.thecut.com/2016/10/autism-speaks-is-no-longer-searching-for-a-cure.html.