Read In a Different Key: The Story of Autism Online

Authors: John Donvan,Caren Zucker

Tags: #History, #Psychology, #Autism Spectrum Disorders, #Psychopathology

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
.

Other books

Wicked Fix by Sarah Graves
Blightborn by Chuck Wendig
An Engagement in Seattle by Debbie Macomber
Truest by Jackie Lea Sommers
The Seventh Crystal by Gary Paulsen
Kill the Dead by Tanith Lee
The Marriage Merger by Jennifer Probst
A Gift of Dragons by Anne McCaffrey


readsbookonline.com Copyright 2016 - 2024