In a Different Key: The Story of Autism (93 page)

“a great expenditure of mental energy”:
Plank, as quoted in
autism reality
.

founded an organization called GRASP:
Author interview with Michael John Carley.

spent nearly a third of his life:
Cara Buckley, “Man Obsessed with Trains Again Runs Afoul of Law,”
New York Times
, November 11, 2006.

“People take one look at him”:
Colleen Long, “Darius McCollum, Serial Transit Impostor, Arrested 29 Times for Stealing Trains and Buses,”
Huffington Post
, August 12, 2013,
http://www.huffingtonpost.com/2013/08/12/darius-mccollum_n_3742778.html
.

“Let us focus instead on mourning”:
Statement from Michael John Carley on the Newtown, Connecticut, shootings, December 14, 2012, available at
https://web.archive.Org/web/20121218041020/http://grasp.org/profiles/blogs/statement-from-michael-john-carley-on-the-newtown-ct-shootings
.

This was a data-based finding:
Peter Szatmari and Marshall B. Jones, “IQ and the Genetics of Autism,”
Journal of Child Psychology and Psychiatry
32, no. 6 (1991): 897–908.

That year, the CDC:
Centers for Disease Control and Prevention,
Morbidity and Mortality Weekly Report
63, no. 2, Surveillance Summaries, March 28, 2014.

CHAPTER 45: NEURODIVERSITY

“a wake-up call to families”:
NYU Child Study Center, “Millions of Children Held Hostage by Psychiatric Disorders,” press release, December 3, 2007.

“Don’t mourn for us”:
Jim Sinclair, “Don’t Mourn for Us,” originally posted November 3, 1993, at
http://www.autreat.com/dont_mourn.html
.

“that it would be much better”:
Dick Cavett interview with Bruno Bettelheim,
The Dick Cavett Show
, ABC, original airdate June 2, 1971.

“left your child’s bewildered body behind”:
Geoffrey Cowley, “Understanding Autism,”
Newsweek
, July 30, 2000.

“This disease has taken”:
Autism Speaks, “Founders’ Message. A Message from Suzanne and Bob Wright: Co-founders,” 2006, available at
https://web.archive.org/web/20060209121732/http://www.autismspeaks.org/founders.php
.

an Australian sociologist:
Judy Singer, “Odd People In: The Birth of Community Amongst People on the ‘Autistic Spectrum,’ ” BA diss., University of Technology, Sydney, 1998.

“Neurotypical Syndrome”:
Institute for the Study of the Neurologically Typical, March 18, 2002,
http://autisticadvocacy.org/
.

“neurodiversity may be”:
Harvey Blume, “Neurodiversity: On the Neurological Underpinnings of Geekdom,”
Atlantic
, September 1998,
http://www.theatlantic.com/past/docs/unbound/citation/wc980930.htm
.

“changing the child’s mind and personality”:
Christopher P. Manfredi and Antonia Maioni, “Reversal of Fortune: Litigating Health Care Reform in
Auton v. British Columbia
,”
Supreme Court Law Review
29, no. 2 (2005), 129.

“Nothing About Us, Without Us”:
Autistic Self Advocacy Network,
http://autisticadvocacy.org/
.

“We struggle socially”:
Mike Ervin, “Autism Group Founder: It’s Time to Listen to What We Have to Say,”
Independence Today
, June 13, 2013,
http://www.itodaynews.com/2013-issues/june13/asan-cover.htm
.

“continued dehumanizing advertising”:
Ari Ne’eman, “Comments at November 30, 2007 IACC Meeting,” Autistic Self Advocacy Network, December 8, 2007,
http://autisticadvocacy.org/2007/12/comments-762at-november-30-2007-iacc-meeting/
.

“issues related to the quality of life”:
Ari Ne’eman, “The Future (and the Past) of Autism Advocacy, Or Why the ASA’s Magazine,
The Advocate
,
Wouldn’t Publish This Piece,”
Disability Studies Quarterly
30, no. 1 (2010). Text available at
http://dsq-sds.org/article/view/1059/1244
.

“To pursue normalization”:
Ibid.

They had found that actual brain size:
“Autism: What We Know. What Is Next?” Simons Foundation Research Initiative, May 2014,
http://simonsfoundation.s3.amazonaws.com/share/sfari-specials/2014/whatweknow/20140501whatWeKnow.pdf
.

that dopamine, the brain chemical:
Nicholette Zeliadt, “Diverse Dopamine Defects Found in People with Autism,” Simons Foundation Autism Research Initiative, November 19, 2014,
http://sfari.org/news-and-opinion/conference-news/2014/society-for-neuroscience-2014/diverse-dopamine-defects-found-in-people-with-autism
.

Eye-tracking technology:
W. Jones and A. Klin, “Attention to Eyes Is Present but in Decline in 2–6-Month-Old Infants Later Diagnosed with Autism,”
Nature
504, no. 7480 (2013): 427–31.

the sleep of autistic children:
K. A. Schreck and J. A. Mulick, “Parental Report of Sleep Problems in Children with Autism,”
Journal of Autism and Developmental Disorders
30, no. 2 (2000): 127–35.

older fathers have an increased chance:
Emma M. Frans et al., “Autism Risk Across Generations: A Population Based Study of Advancing Grandpaternal and Paternal Age,”
JAMA Psychiatry
70, no. 5 (2013): 516–21.

mothers who take folic acid:
R. J. Schmidt, R. L. Hansen, and I. Hertz-Picciotto, “Maternal Periconceptional Folic Acid Intake and Risk for Autism Spectrum Disorders in the CHARGE Case-Control Study,”
American Journal of Clinical Nutrition
96, no. 1 (2012): 80–89.

Prenatal studies were also:
Brian Lee et al., “Maternal Hospitalization with Infection During Pregnancy and Risk of Autism Spectrum Disorders,”
Brain, Behavior, and Immunity
44 (2015): 100–105.

experiencing high fevers:
Lauren P. Curran et al., “Behaviors Associated with Fever in Children with Autism Spectrum Disorders,”
Pediatrics
120, no. 6 (2007): 1386–92.

Melatonin helped some children:
Beth A. Malow et al., “Melatonin for Sleep in Children with Autism: A Controlled Trial Examining Dose, Tolerability, and Outcomes,”
Journal of Autism and Developmental Disorders
42, no. 8 (2012): 1729–37.

Risperidone and other antipsychotics:
C. J. McDougle et al., “Risperidone for the Core Symptom Domains of Autism: Results from the Study by the Autism Network of the Research Units on Pediatric Psychopharmacology,”
American Journal of Psychiatry
162, no. 6 (2005): 1142–48.

At the National Institutes of Health, the DNA:
Jill L. Silverman, Mu Yang, Catherine Lord, and Jacqueline N. Crawley, “Behavioural Phenotyping Assays for Mouse Models of Autism,”
Nature Reviews Neuroscience
11 (2010): 490–502.

neural wiring of the fruit fly:
Ralph Greenspan, “Using Fruit Flies to Map the Network of Autism-Associated Genes,” Simons Foundation Autism
Research Initiative, January 2011,
https://sfari.org/funding/grants/abstracts/using-fruit-flies-to-map-the-network-of-autism-associated-genes
.

“that of eugenic abortion”:
Ne’eman, “Future (and the Past) of Autism Advocacy.”

“Autism is part of what I am”:
Oliver Sacks, “A Neurologist’s Notebook: An Anthropologist on Mars,”
New Yorker
, December 27, 1993.

call the NYU Child Study Center:
“An Urgent Call to Action: Tell NYU Child Study Center to Abandon Stereotypes Against People with Disabilities,” Autistic Self Advocacy Network, December 8, 2007,
http://autisticadvocacy.org/2007/12/tell-nyu-child-study-center-to-abandon-stereotypes/
.

other, more recognized, disability organizations:
Ne’eman’s recollections on ASAN and his campaign for neurodiversity are from an author interview.

had attracted coverage from:
Christina Boyle, “Psych Groups’ Fury over ‘Ransom’ Ads,”
New York Daily News
, December 13, 2007.

“ride out the storm”:
Joanne Kaufman, “Campaign on Childhood Mental Illness Succeeds at Being Provocative,”
New York Times
, December 14, 2007.

“You don’t have my son”:
“Ransom Notes and Love Letters,” MOM–Not Otherwise Specified Blog, December 10, 2007,
http://momnos.blogspot.com/2007/12/ransom-notes-and-love-letters.html
.

“These ads reflect”:
Ari Ne’eman interview.

Autism Speaks awareness-raising “walk”:
“Locally-Founded Autism Group Protests D.C. Walk for Autism,” WAMU American University Radio, Washington, DC, November 2, 2009.

video called
I Am Autism:
Claudia Wallis, “ ‘I Am Autism’: An Advocacy Video Sparks Protest,”
Time
, November 6, 2009.

few people who wanted to take him on:
Jon Shestack was an exception, who publicly challenged Ne’eman’s argument multiple times.

“disappointing and ill-advised”:
“ASAN Condemns Presidential Appointment of Anti-Vaccine Activist Peter Bell,” Autistic Self Advocacy Network, January 12, 2012,
autisticadvocacy.org/2012/01/asan-condemns-presidential-appointment-of-anti-vaccine-activist-peter-bell/
.

an autistic person any less autistic:
Liz Bell’s recollections of her meeting with Ari Ne’eman are from an interview with the authors.

“mindblindness”:
Simon Baron-Cohen,
Mindblindness: An Essay on Autism and Theory of Mind
(Boston: MIT Press/Bradford Books, 1995).

A corollary theory:
Simon Baron-Cohen,
The Essential Difference: Male and Female Brains and the Truth About Autism
(New York: Basic Books, 2003), 37–44.

“rather an elusive category”:
David C. Gile, “ ‘
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.

twelve different American research centers:
C. E. Lord et al., “Multi-Site Study of the Clinical Diagnosis of Different Autism Spectrum Disorders,”
Archives of General Psychiatry
69, no. 3 (2012): 306–13.

would not qualify for an Asperger’s diagnosis:
J. Miller and S. Ozonoff, “Did Asperger’s Cases Have Asperger Disorder? A Research Note,”
Journal of Child Psychology and Psychiatry
38, no. 2 (1997): 247–51.

“definitions influenced by the literature”:
Susan Dickerson Mayes, Susan L. Calhoun, and Dana L. Crites, “Does
DSM-IV
Asperger’s Disorder Exist?”
Journal of Abnormal Child Psychology
29, no. 3 (2001): 263–71.

“It’s confusing and not terribly useful”:
Claudia Wallis, “A Powerful Identity, a Vanishing Diagnosis,”
New York Times
, November 2, 2009.

Fred Volkmar of Yale resigned:
Author interview with Fred Volkmar.

“But I’d keep Asperger’s”:
Wallis, “A Powerful Identity, a Vanishing Diagnosis.”

“to help ensure clinical continuity”:
Michael John Carley, “Improve
DSM-5
Diagnostic Criteria for Autism,” petition on
change.org
,
https://www.change.org/p/american-psychiatric-association-dsm-5-task-force-and-work-group-improve-dsm-5-diagnostic-criteria-for-autism
.

“taking away our identity”:
Thread on
wrongplanet.net
, beginning July 17, 2010, “
DSM-5
Is Taking Away Our Identity Soapbox Alert,”
http://www.wrongplanet.net/forums/viewtopic.php?p=2923037
.

“New Definition of Autism”:
Benedict Carey, “New Definition of Autism Will Exclude Many, Study Suggests,”
New York Times
, January 19, 2012.

“showing fidelity to the research”:
Steven Kapp and Ari Ne’eman, “ASD in
DSM-5:
What the Research Shows and Recommendations for Change,” ASAN Policy Brief, June 2012,
http://autisticadvocacy.org/wp-content/uploads/2012/06/ASAN_DSM-5_2_final.pdf
.

“did a great service in raising awareness”:
Francesca Happé, “Why Fold Asperger Syndrome into Autism Spectrum Disorder in the
DSM-5
?” View—Simons Foundation Autism Research Initiative, March 29, 2011,
http://sfari.org/news-and-opinion/viewpoint/2011/why-fold-asperger-syndrome-into-autism-spectrum-disorder-in-the-dsm-5
.