756 Melissa L. McPheeters et al., “A systematic review of medical treatments for children with autism spectrum disorders,” Pediatrics 127, no. 5 (May 2011), discusses alternative as well as conventional treatments.
757 This passage is based on my interview with Amy Wolf in 2004 and subsequent communications. All names in this passage are pseudonyms.
758 The Musashino Higashi Gakuen School’s organizational website is at http://www.musashino-higashi.org, and the Boston Higashi School website is at http://www.bostonhigashi.org. For descriptions of the Higashi methodology, see the National Autistic Society’s FAQ “Daily life therapy: Higashi,” and Mike Collins and Richard Mills, “Common ground: Report on a visit by the National Autistic Society to the Boston Higashi School, 5th–9th November 1995,” and the Institute for Complementary Practices, “The Higashi method” (2004). Positive journalistic reports about the school include “Autism: A theory from Tokyo,” New York Times, October 7, 1986; Catherine Foster, “Refusing to accept limits: Japanese educator’s school helps autistic children,” Christian Science Monitor, October 9, 1987; Marjorie Wallace, “Hope for the shadow children,” London Times Sunday Magazine, March 13, 1988; and Nicole Veash, “Japanese ideas find favour in the west,” Independent, November 13, 1997. For coverage of accusations of abuse by school staff, see Muriel Cohen’s and Aaron Zitner’s 1989 and 1990 reports in the Boston Globe; the Dateline NBC report “For the love of Scott,” broadcast January 18, 2004; and Megan Tench and Sarah Schweitzer, “Teacher at Higashi school convicted of harming student,” Boston Globe, June 29, 2005. More details on the outcome of one lawsuit against the school can be found in “Verdicts and settlements: Family of autistic child alleges abuse at private school (Tedeman v. Boston Higashi School et al.),” Massachusetts Lawyers Weekly.
759 The study of enhanced abilities in autism is a special focus of Laurent Mottron and his research team at Hôpital Rivière-des-Prairies in Montréal. Reports of their work include M. J. Caron et al., “Cognitive mechanisms, specificity and neural underpinnings of visuospatial peaks in autism,” Brain 129, no. 7 (July 2006); Laurent Mottron et al., “Enhanced perceptual functioning in autism: An update, and eight principles of autistic perception,” Journal of Autism & Developmental Disorders 36, no. 1 (January 2006); Robert M. Joseph et al., “Why is visual search superior in autism spectrum disorder?,” Developmental Science 12, no. 6 (December 2009); and Fabienne Samson et al., “Enhanced visual functioning in autism: An ALE meta-analysis,” Human Brain Mapping (April 4, 2011).
760 This and subsequent quotations by Joyce Chung come from my interview with her in 2008 and subsequent communications.
761 Thorkil Sonne’s innovative business venture is described in David Bornstein, “For some with autism, jobs to match their talents,” New York Times, June 30, 2011.
762 The quotation from John Elder Robison on being a savant occurs on page 209 of Look Me in the Eye (2007).
763 This passage is based on my interviews with Temple Grandin in 2004 and 2008.
764 The following quotations in this passage from Eustacia Cutler come from A Thorn in My Pocket (2004), page 38 (“tantrums are hard to handle”); page 106 (“God says be fruitful and multiply”); page 151 (“Adolescence is hard enough for any child”); page 164 (“slowly, with no innate concept”); and page 219 (“despite her extraordinary accomplishments”).
765 The next quote (“You have to pull them out of the limbo”) is from personal communication with Eustacia Cutler in 2012.
766 The quotation from Jim Sinclair comes from his essay “Don’t mourn for us,” Our Voice 1, no. 3 (1993).
767 The quotation from Jim Sinclair likening the expression person with autism to person with maleness comes from his 1999 essay “Why I dislike ‘person-first’ language,” archived at http://web.archive.org/web/20030527100525/http://web.syr.edu/~jisincla/person_first.htm.
768 The quotation from Isabelle Rapin comes from a 2009 presentation at Cold Spring Harbor Laboratory.
769 The quotation from Alex Plank comes from my interview with him in 2008.
770 Quotations from Ari Ne’eman here and following are from my interview with him in 2008 and subsequent communications.
771 Ari Ne’eman’s December 7, 2007, memo to Autistic Self Advocacy Network members, “An urgent call to action: Tell NYU Child Study Center to abandon stereotypes against people with disabilities,” can be read in its entirety on the organization’s website, http://www.autisticadvocacy.org/modules/smartsection/print.php?itemid=21.
772 For news reports about the ransom notes protest, see Joanne Kaufman, “Campaign on childhood mental illness succeeds at being provocative,” New York Times, December 14, 2007; Shirley S. Wang, “NYU bows to critics and pulls ransom-note ads,” Wall Street Journal Health Blog, December 19, 2007; Robin Shulman, “Child study center cancels autism ads,” Washington Post, December 19, 2007; and Joanne Kaufman, “Ransom-note ads about children’s health are canceled,” New York Times, December 20, 2007. In 2010, a scholarly paper was published about the ransom notes scandal: Joseph F. Kras, “The ‘Ransom Notes’ affair: When the neurodiversity movement came of age,” Disability Studies Quarterly 30, no. 1 (January 2010).
773 Ne’eman’s appointment to the National Council on Disability was announced in the December 16, 2009, White House press release “President Obama Announces More Key Administration Posts.” The ensuing controversy is described in Amy Harmon, “Nominee to disability council is lightning rod for dispute on views of autism,” New York Times, March 28, 2010.
774 This and subsequent quotations from Judy Singer come from an interview I did with her in 2008.
775 The first published use of the term neurodiversity occurs in Harvey Blume, “Neurodiversity,” Atlantic, September 30, 1998. Judy Singer’s first published use of the term neurodiversity occurs in her essay “Why can’t you be normal for once in your life: From a ‘problem with no name’ to a new kind of disability,” in Disability Discourse, edited by M. Corker and S. French (1999).
776 The quotations by Camille Clark come from personal e-mail communications.
777 The quotation from Jim Sinclair (“The ways we relate are different”) comes from his essay “Don’t mourn for us,” Our Voice 1, no. 3 (1993).
778 The quotation from Gareth Nelson comes from Emine Saner, “It is not a disease, it is a way of life,” Guardian, August 6, 2007.
779 The quotation from Richard Grinker, author of Unstrange Minds: Remapping the World of Autism (2007), comes from my interview with him in 2008.
780 The “baby-eating” image was created by Adriana Gamondes and published as “Pass the Maalox: An AoA Thanksgiving nightmare,” Age of Autism, November 29, 2009 (removed from the blog, but archived at http://web.archive.org/web/20091202093726/http://www.ageofautism.com/2009/11/pass-the-maalox-an-aoa-thanksgiving-nightmare.html).
781 The quotation from Kit Weintraub (“The fact that my children have an abnormality of development”) comes from her 2007 essay, “A mother’s perspective,” published on the website of the Association for Science in Autism Treatment,http://www.asatonline.org/forum/articles/mother.htm.
782 The quotation from Jonathan Mitchell (“The neurodiverse reach a vulnerable audience”) comes from his 2007 essay “Neurodiversity: Just say no,” http://www.jonathans-stories.com/non-fiction/neurodiv.html.
783 Newsgroup posts characterizing ideological opponents in insulting terms come from the Evidence of Harm discussion group on Yahoo! and were quoted in Kathleen Seidel’s May 2005 letter “Evidence of venom: An open letter to David Kirby,” published at http://www.neurodiversity.com/evidence_of_venom.html.
784 The quotation from Sarah Spence comes from personal communication in 2011.
785 Simon Baron-Cohen’s statement that “autism is both a disability and a difference” occurs in Emine Saner, “It is not a disease, it is a way of life,” Guardian, August 6, 2007.
786 The passage from the autistics.org website appears in Amy Harmon, “How about n
ot ‘curing’ us, some autistics are pleading,” New York Times, December 20, 2004.
787 In My Language, MOV video, directed by Amanda Baggs, privately produced, January 14, 2007, http://www.youtube.com/watch?v=JnylM1hI2jc.
788 The quotation from Jane Meyerding (“If people on the autistic spectrum all came out”) comes from her 1998 essay “Thoughts on finding myself differently brained,” published online at http://www.planetautism.com/jane/diff.html.
789 The quote by Richard Grinker (“When people pity me for my daughter, I don’t understand the sentiment”) occurs on page 35 of his book Unstrange Minds: Remapping the World of Autism (2007).
790 The quotation from Kate Movius (“Nothing has yielded a ‘eureka’ moment”) comes from her article “Autism: Opening the window,” Los Angeles, September 2010.
791 For speculation that various historic and literary figures might have been autistic, see Michael Fitzgerald, The Genesis of Artistic Creativity: Asperger’s Syndrome and the Arts (2005).
792 This passage is based on my interview with Bill, Jae, Chris, and Jessie Davis in 2003, and further interviews with Bill, as well as other communications. The Davis family is featured in Abigail Pogrebin’s article “Autism: ’Don’t ignore my son!,’” Parents, December 2008. Bill Davis and Wendy Goldband Schunick are the authors of Breaking Autism’s Barriers: A Father’s Story (2001) and Dangerous Encounters: Avoiding Perilous Situations with Autism (2002).
793 Vincent Carbone’s method is described in Vincent J. Carbone and Emily J. Sweeney-Kerwin, “Increasing the vocal responses of children with autism and developmental disabilities using manual sign mand training and prompt delay,” Journal of Applied Behavior Analysis 43, no. 4 (Winter 2010).
794 The Jae Davis Parent Scholarship program is described in Justin Quinn, “Local parents get scholarships to attend conference on autism,” Lancaster Intelligencer-Journal, July 30, 2004; and “For mother and son, life lessons as death nears: Woman ravaged by cervical cancer prepares autistic son for her passing,” Lancaster Intelligencer-Journal, August 20, 2003; the Jae Davis Internship Program is mentioned in Maria Coole, “Report recommendations could put Pa. at forefront in autism services,” Lancaster Intelligencer-Journal, April 23, 2005. In September 2004, the Organization for Autism Research announced the establishment of the Jae Davis Memorial Award; see “OAR Seeks Nominations for Community Service Award in Honor of the Late Jae Davis,” at http://www.researchautism.org/news/pressreleases/PR090204.asp.
795 Oliver Sacks, An Anthropologist on Mars: Seven Paradoxical Tales (1995).
796 News reports on murders and attempted murders of autistic children and adults by their parents that are described in this section:
Charles-Antoine Blais: Peter Bronson, “For deep-end families, lack of hope can kill,” Cincinnati Enquirer, October 9, 2005.
Casey Albury: Kevin Norquay, “Autism: Coping with the impossible,” Waikato Times, July 17, 1998; Paul Chapman, “Mom who strangled autistic child tried to get her to jump off bridge,” Vancouver Sun, July 11, 1998; and “Murder accused at ‘end of her tether,’” Evening Post, July 14, 1998.
Pierre Pasquiou: “Suspended jail term for French mother who killed autistic son,” BBC Monitoring International Reports, March 2, 2001.
James Joseph Cummings: “Man gets five years in prison for killing autistic son,” Associated Press, 1999.
Daniel Leubner: “Syracuse: Woman who killed autistic son is freed,” New York Times, May 12, 2005.
Gabriel Britt: “Man pleads guilty to lesser charge,” Aiken Standard, August 7, 2003.
Johnny Churchi: Barbara Brown, “Mother begins trial for death of her son,” Hamilton Spectator, May 5, 2003; and Susan Clairmont, “‘Sending you to heaven’ said mom,” Hamilton Spectator, May 6, 2003.
Angelica Auriemma: Nancie L. Katz, “Guilty in autistic’s drowning,” New York Daily News, February 19, 2005. Sentencing information comes from the New York State Department of Corrections and Community Supervision.
Terrance Cottrell: Chris Ayres, “Death of a sacrificial lamb,” Times, August 29, 2003.
Jason Dawes: Lisa Miller, “He can’t forgive her for killing their son but says spare my wife from a jail cell,” Daily Telegraph, May 26, 2004.
Patrick Markcrow and Sarah Naylor: Peter Bronson, “For deep-end families, lack of hope can kill,” Cincinnati Enquirer, October 9, 2005.
Christopher DeGroot: Cammie McGovern, “Autism’s parent trap,” New York Times, June 5, 2006.
Jose Stable: Al Baker and Leslie Kaufman, “Autistic boy is slashed to death and his father is charged,” New York Times, November 23, 2006.
Brandon Williams: Cheryl Korman, “Judge: Autistic’s mom to serve 10 years for ‘torture of her vulnerable child,’” Tucson Citizen, September 19, 2008.
Jacob Grabe: Paul Shockley, “Grabe gets life in son’s murder,” Daily Sentinel, March 31, 2010.
Son of Zvia Lev: Michael Rotem, “Mother found guilty of killing her autistic son,” Jerusalem Post, February 22, 1991.
797 The quotation from the president of the Montreal Autism Society comes from Debra J. Saunders, “Children who deserve to die,” San Francisco Chronicle, September 23, 1997.
798 Laura Slatkin’s remark about “that hidden, dark thought” is quoted in Diane Guernsey, “Autism’s angels,” Town & Country, August 1, 2006.
799 The quotation from Cammie McGovern comes from her article “Autism’s parent trap,” New York Times, June 5, 2006.
800 The quotation from Joel Smith comes from the essay “Murder of autistics,” published on his weblog, This Way of Life, http://www.geocities.com/growingjoel/murder.html.
801 The quotation from Karen McCarron comes from the Associated Press reports “‘Autism left me hollow,’ says mother accused of murder,” Dispatch-Argus, June 6, 2007; and “Mom convicted in autistic girl’s death,” USA Today, January 17, 2008.
802 Karen McCarron’s friend is quoted in Phil Luciano, “Helping everyone but herself,” Peoria Journal Star, May 18, 2006.
803 The quotations from Mike McCarron, Katie’s grandfather, come from a discussion of Kristina Chew, “I don’t have a title for this post about Katherine McCarron’s mother,” Autism Vox, June 8, 2006, and an interview with journalist Phil Luciano, “This was not about autism,” Peoria Journal-Star, May 24, 2006.
804 Stephen Drake’s and Dave Reynolds’s remarks occur in Not Dead Yet’s June 22, 2006, press release, “Disability advocates call for restraint and responsibility in murder coverage.”
805 Heidi Shelton is quoted in Larry Welborn, “Mom who drugged son gets deal,”Orange County Register, May 4, 2003.
806 John Victor Cronin’s wife’s comment appears in Nick Henderson, “Attack on wife: Mental health system blamed,” Advertiser, October 13, 2006.
807 The quotation from Debra Whitson comes from the article “Woman charged with trying to kill son,” Milwaukee Journal Sentinel, May 14, 1998.
808 Statistics on the percentage of filicides attributed by their perpetrators to “altruism” come from Phillip J. Resnick, “Child murder by parents: A psychiatric review of filicide,” American Journal of Psychiatry 126, no. 3 (September 1969).
809 For a discussion of the impact of altruistic explanations for filicide, see Dick Sobsey, “Altruistic filicide: Bioethics or criminology?,” Health Ethics Today 12, no. 1 (Fall/November 2001).
810 Possible motivations for filicide are discussed on page 111 of John E. Douglas et al., Crime Classification Manual: A Standard System for Investigating and Classifying Violent Crimes (1992).
VI: Schizophrenia
811 Statistics on suicide risk in schizophrenia come from Maurizio Pompili et al., “Suicide risk in schizophrenia: Learning from the past to change the future,” Annals of General Psychiatry 6 (March 16, 2007).
812 The quotation from the sister of a schizophrenic man comes from Carole Stone, “First person: Carole Stone on life with her schizophrenic brother,”Guardian, November 12, 2005.
813 Th
is passage is based on an interview with Kitty and Pamela Watson in 2007 and on subsequent communications. All names in this passage are pseudonyms.
814 Useful general introductions to schizophrenia include Christopher Frith and Eve Johnstone, Schizophrenia: A Very Short Introduction (2003); Michael Foster Green, Schizophrenia Revealed: From Neurons to Social Interactions (2001); Rachel Miller and Susan E. Mason, Diagnosis: Schizophrenia (2002); E. Fuller Torrey, Surviving Schizophrenia (2006); and the NIH booklet Schizophrenia (2007).
815 The quotation from the schizophrenic woman describing her positive symptoms (“I could find no rest, for horrible images assailed me . . .”) occurs on page 37 of Marguerite Sechehaye, Autobiography of a Schizophrenic Girl: The True Story of “Renee” (1951).
816 The quotation from the patient describing negative symptoms of schizophrenia (“I am all the time losing . . .”) occurs on page 2 of Christopher Frith and Eve Johnstone, Schizophrenia: A Very Short Introduction (2003).
817 The quotation from Eric Kandel is from a personal communication in 2009.
818 The poem quoted is Emily Dickinson’s “I Felt a Cleaving in My Mind,” no. 937 in The Complete Poems of Emily Dickinson (1960).
819 For more information on childhood-onset schizophrenia, see Judith L Rapoport and Nitin Gogtay, “Childhood onset schizophrenia: Support for a progressive neurodevelopmental disorder,” International Journal of Developmental Neuroscience 29, no. 3 (May 2011); and Anna E. Ordoñez and Nitin Gogtay, “Phenomenology and neurobiology of childhood onset schizophrenia,” Current Psychiatry Reviews 2 (2006).
820 The life course of schizophrenia is described in greater detail in Elaine Walker et al., “Schizophrenia: Etiology and course,” Annual Review of Psychology 55 (February 2004). See also figure 1 in Jeffrey A. Lieberman et al., “Science and recovery in schizophrenia,” Psychiatric Services 59 (May 2008).
Far From the Tree Page 119