587 A transcript of Windy Smith’s speech at the 2000 Republican National Convention is hosted on the ABC News website at http://abcnews.go.com/Politics/story?id=123241&page=1. The quotation about “grotesque political theater” comes from Tom Scocca, “Silly in Philly,” Metro Times, August 9, 2000. Other writers noted how incongruous it was to consider President Bush any champion for the disabled, given Texas’s poor quality services, and the state’s legal position in a case centering on the right of institutionalized persons to choice in their living accommodations; see Martin Miller, “Is campaign’s path to the heart a proper one?,” Los Angeles Times, August 11, 2000. For a disability rights perspective on coverage of Windy Smith’s appointment to the presidential panel, see Dave Reynolds, “Media still leaves voices out,” Ragged Edge, May/June 2003.
588 For an interview with Chris Burke, see Jobeth McDaniel, “Chris Burke: Then and Now,” Ability Magazine, February 2007. Burke maintains a personal website at http://www.chrisburke.org; Bobby Brederlow’s is at http://www.bobby.de/. Judith Scott is the subject of her sister Joyce Scott’s memoir, EnTWINed (2006); see also John M. MacGregor, Metamorphosis: The Fiber Art of Judith Scott: The Outsider Artist and the Experience of Down’s Syndrome (1999). For an interview with Lauren Potter, see Michelle Diament, “Down syndrome takes center stage on Fox’s ‘Glee,’” Disability Scoop, April 12, 2010.
589 For more information on short-term memory and information processing in Down syndrome, see Robert M. Hodapp and Elisabeth M. Dykens’s chapter, “Genetic and behavioural aspects: Application to maladaptive behaviour and cognition,” in Jean A. Rondal et al., Intellectual Disabilities: Genetics, Behaviour and Inclusion (2004).
590 Greg Palmer, Adventures in the Mainstream: Coming of Age with Down Syndrome (2005). Ned Palmer’s poem appears in the book on page 40; the quotation appears on page 98.
591 The marriage saga of Corky (Chris Burke) and Amanda (Andrea Friedman) begins at season 4, episode 3, “Premarital Syndrome” (originally broadcast on October 4, 1992; see http://www.tvguide.com/tvshows/life-goes-on-1992/episode-3-season-4/premarital-syndrome/202678). For the backstory on this love story, see Howard Rosenberg, “There’s more to ‘life’ than ratings,” Los Angeles Times, April 18, 1992, and “They’ll take romance,” People, April 6, 1992.
592 This passage is based on my interview with Tom and Karen Robards in 2007 and subsequent communications.
593 Cooke Center organizational website: http://www.cookecenter.org/.
594 For more information on this condition, see Lynn K. Paul et al., “Agenesis of the corpus callosum: Genetic, developmental and functional aspects of connectivity,” Nature Reviews: Neuroscience 8, no. 4 (April 2007).
V: Autism
595 My source for historical information on autism prevalence, and autism in general, is Laura Schreibman, The Science and Fiction of Autism (2005). On March 30, 2012, the CDC upped its autism prevalence estimates from 1:110 to 1:88; see Jon Baio, “Prevalence of autism spectrum disorders: Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008,” Morbidity & Mortality Weekly Report (MMWR), March 30, 2012.
596 The quotation from Eric Kandel comes from my interview with him in 2009. He has spoken about this, also, in Eric Kandel, “Interview: biology of the mind,” Newsweek, March 27, 2006.
597 According to the Coalition for SafeMinds website at http://safeminds.org, “SafeMinds” stands for “Sensible Action for Ending Mercury-Induced Neurological Disorders.”
598 The full text of the Combating Autism Act of 2006 (Public Law 109–416) can be found at http://thomas.loc.gov/cgi-bin/bdquery/z?d109:S843:; the text of the Combating Autism Reauthorization Act of 2011 (Public Law 112–32) can be found at http://thomas.loc.gov/cgi-bin/query/z?c112:H.R.2005:. The role of parent advocacy groups in promoting the bill is described in Ed O’Keefe’s report for ABC News, “Congress declares war on autism,” broadcast December 6, 2006. Cure Autism Now and Autism Speaks merged in 2007; see Autism Speaks’ February 5, 2007, press release, “Autism Speaks and Cure Autism Now complete merger” (http://www.autismspeaks.org/about-us/press-releases/autism-speaks-and-cure-autism-now-complete-merger).
599 Thomas Insel’s remark was a personal communication.
600 The astonishing proliferation of books and films about autism is vividly revealed by WorldCat, a consolidated catalog of library holdings worldwide. A search of the keyword autism for 1997 yields 1,221 items; for 2011, 7,486 items.
601 The diagnostic criteria for autism (“299.00 Autistic Disorder”), Asperger syndrome (“299.80 Asperger’s Disorder”), and PDD-NOS (“299.80 Pervasive Developmental Disorder Not Otherwise Specified”) can be found in Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR, 4th ed. (2000), pages 70–84.
602 For a reliable, basic introduction to autism, see Shannon des Roches Rosa et al., The Thinking Person’s Guide to Autism (2011).
603 Sources of estimates on the incidence of regression in autism include C. Plauché Johnson et al., “Identification and evaluation of children with autism spectrum disorders,” Pediatrics 120, no. 5 (November 2007); Gerry A. Stefanatos, “Regression in autistic spectrum disorders,”Neuropsychology Review 18 (December 2008); Sally J. Rogers, “Developmental regression in autism spectrum disorders,” Mental Retardation & Developmental Disabilities Research Review 10, no. 2 (May 2004); and Robin L. Hansen, “Regression in autism: Prevalence and associated factors in the CHARGE study,” Ambulatory Pediatrics 8, no. 1 (January 2008).
604 Emily Perl Kingsley’s 1987 essay, “Welcome to Holland,” can be found all over the Internet, as well as in Jack Canfield, Chicken Soup for the Soul: Children with Special Needs (2007). Susan Rzucidlo’s retort, “Welcome to Beirut,” also self-published, can be found at http://www.bbbautism.com/beginners_beirut.htm and on a few dozen other websites.
605 My original work on neurodiversity may be found in my article “The autism rights movement,” New York, May 25, 2008.
606 This passage is based on numerous interviews with Betsy Burns and Jeff Hansen between 2003 and 2012 and other communications.
607 The neurologist was perhaps overly pessimistic to assert that Cece would never talk if she hadn’t begun to do so after intensive early intervention; a 2004 paper concluded that 90 percent of autistic children develop functional speech by the age of nine: Catherine Lord et al., “Trajectory of language development in autistic spectrum disorders,” in Developmental Language Disorders: From Phenotypes to Etiologies (2004).
608 Jim Simons, who has been a leading funder of autism research through the Simons Foundation, noted in a personal communication that when his daughter got a fever, her autism symptoms dissipated and she was able to function better than she usually could. That other bodily conditions might have some impact on the expression of autistic symptoms and might underlie sudden, nonpermanent transformations such as Cece’s is a subject of investigation, though there is not enough science yet to make therapeutic use of the idea. For a discussion of the correlation between fever and behavioral improvement, see L. K. Curran et al., “Behaviors associated with fever in children with autism spectrum disorders,” Pediatrics 120, no. 6 (December 2007); Mark F. Mehler and Dominick P. Purpura, “Autism, fever, epigenetics and the locus coeruleus,” Brain Research Reviews 59, no. 2 (March 2009); and David Moorman, “Workshop report: Fever and autism,” Simons Foundation for Autism Research, April 1, 2010, http://sfari.org/news-and-opinion/workshop-reports/2010/workshop-report-fever-and-autism.
609 The first quotation from Elizabeth (Betsy) Burns’s 2003 novel, Tilt: Every Family Spins on Its Own Axis, occurs on page 96, the second on pages 43–44.
610 Researchers have found a higher-than-average incidence of psychiatric conditions among family members of individuals with autism; e.g., Mohammad Ghaziuddin, “A family history study of Asperger syndrome,” Journal of Autism and Developmental Disorders 35, no. 2 (2005); and Joseph Piven and Pat Palmer. “Psychiatric disorder and the broad autism phenotype
: Evidence from a family study of multiple-incidence autism families,” American Journal of Psychiatry 156, no. 14 (April 1999).
611 With respect to the litany of medications, Abilify (aripiprazole) is an atypical antipsychotic and antidepressant; Topamax (topiramate) is an anticonvulsant; Seroquel (quetiapine) is an atypical antipsychotic often used off-label for treatment of anxiety and insomnia; Prozac (fluoxetine) is a selective serotonin reuptake inhibitor; Ativan (lorazepam) is a benzodiazepine and antianxiolytic; Depakote (valproate semisodium) is used in the treatment of depression, bipolar disorder, and epilepsy; Trazodone is an antidepressant and antianxiolytic; Risperdal (risperidone) is an atypical antipsychotic used in the treatment of schizophrenia and mania; Anafranil (clomipramine) is a tricyclic antidepressant; Lamictal (lamotrigine) is an anticonvulsant used in the treatment of epilepsy and bipolar disorder; Benadryl (diphenhydramine) is an antihistamine; Melatonin is a hormone used in the regulation of sleep-wake cycles; and Calms Forté is homeopathic preparation containing infinitesimal amounts of passionflower, oats, hops, and chamomile, and plenty of sugar.
612 In a mixed manic episode, mania and depression are experienced simultaneously or in rapid sequence. This family’s experience is not rare. Researchers have found a higher-than-average incidence of psychiatric conditions among family members of individuals with autism; e.g., Mohammad Ghaziuddin, “A family history study of Asperger syndrome,” Journal of Autism and Developmental Disorders 35, no. 2 (2005); and Joseph Piven and Pat Palmer, “Psychiatric disorder and the broad autism phenotype: Evidence from a family study of multiple-incidence autism families,” American Journal of Psychiatry 156, no. 14 (April 1999).
613 The Oxford English Dictionary, 2nd ed. (1989), offers the following passage from Eugen Bleuler’s 1913 paper, “Autistic thinking,” American Journal of Insanity 69 (1913), page 873: “When we look more closely we find amongst all normal people many and important instances where thought is divorced both from logic and from reality. I have called these forms of thinking autistic, corresponding to the idea of schizophrenic autismus.” An earlier instance, from Bleuler’s 1911 paper “Dementia praecox oder gruppe der schizophrenien,” is quoted in Josef Parnas et al., “Schizophrenic autism: Clinical phenomenology and pathogenic implications,” World Psychiatry 1, no. 3 (October 2002), page 131: “The . . . schizophrenics who have no more contact with the outside world live in a world of their own. They have encased themselves with their desires and wishes . . .; they have cut themselves off as much as possible from any contact with the external world. This detachment from reality with the relative and absolute predominance of the inner life, we term autism.”
614 The term childhood schizophrenia was coined in the 1930s and was loosely used to refer to a wide range of cognitive impairments manifesting in early childhood. Propagators of the term include Lauretta Bender, a child psychiatrist practicing at Bellevue Hospital, who published numerous reports of her clinical observations. For a contemporary expression of concern about the inappropriate application of the term, see Hilde L. Mosse, “The misuse of the diagnosis childhood schizophrenia,” American Journal of Psychiatry 114, no. 9 (March 1958); Robert F. Asarnow and Joan Rosenbaum Asarnow review the history of the diagnosis in “Childhood-onset schizophrenia: Editors’ introduction,” Schizophrenia Bulletin 20, no. 4 (October 1994).
615 Leo Kanner’s seminal 1943 report, “Autistic disturbances of affective contact,” is included in an anthology of his papers, Childhood Psychosis: Initial Studies and New Insights (1973).
616 In 1943, Kanner noted the supposed coldness of the mothers of autistic children, but left open the possibility that the condition was inborn. See “Autistic disturbances of affective contact,” in Childhood Psychosis: Initial Studies and New Insights (1973), page 42: “One other fact stands out prominently. In the whole group, there are very few really warmhearted fathers and mothers. For the most part, the parents, grandparents, and collaterals are persons preoccupied with abstractions of a scientific, literary or artistic nature, and limited in general interest in people. Even some of the happiest marriages are cold and formal affairs. Three of the marriages were dismal failures. The question arises whether or to what extent this fact has contributed to the condition of the children. The children’s aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of the early parental relations with our patients.”
By 1949, Kanner had more fully developed his parent-blaming theory; the term refrigerator appears twice in his 1949 article “Problems of nosology and psychodynamics in early childhood autism,” American Journal of Orthopsychiatry 19, no. 3 (July 1949). From the paper: “The parents’ behavior toward the children must be seen to be fully appreciated. Maternal lack of genuine warmth is often conspicuous in the first visit to the clinic. As they come up the stairs, the child trails forlornly behind the mother, who does not bother to look back. The mother accepts the invitation to sit down in the waiting room, while the child sits, stands, or wanders about at a distance. Neither makes a move toward the other. Later, in the office, when the mother is asked under some pretext to take the child on her lap, she usually does so in a dutiful, stilted manner, holding the child upright and using her arms solely for the mechanical purpose of maintaining him in his position. I saw only one mother of an autistic child who proceeded to embrace him warmly and bring her face close to his. Some time ago, I went to see an autistic child, the son of a brilliant lawyer. I spent an evening with the family. Donald, the patient, sat down next to his mother on the sofa. She kept moving away from him as though she could not bear the physical proximity. When Donald moved along with her, she finally told him coldly to go and sit on a chair.
“Many of the fathers hardly know their autistic children. They are outwardly friendly, admonish, teach, observe ‘objectively,’ but rarely step down from the pedestal of somber adulthood to indulge in childish play. One father, a busy and competent surgeon, had three children. The first, a girl, was docile, submissive, and gave no cause for concern to the parents. The second, a boy, was very insecure and stuttered badly. The third, George, was an extremely withdrawn, typically autistic child. The father, who once told me proudly that he never wasted his time talking to his patients’ relatives, did not see anything wrong with George, who was merely ‘a little slow’ and would ‘catch up’ eventually. When nothing could shake this man’s smiling impassiveness, I tried to arouse his anger by asking him if he would recognize any of his children if they passed him on a busy street. Far from being irked, he deliberated for a while and replied, just as impassively, that he was not sure that he would. This seemingly unemotional objectivity, applied to oneself and to others, is a frequent expression of the mechanization of human relationships.
“The void created by the absence of wholehearted interest in people is occupied by a devotion to duty. Most of the fathers are, in a sense, bigamists. They are wedded to their jobs at least as much as they are married to their wives. The job, in fact, has priority. Many of the fathers remind one of the popular conception of the absent-minded professor who is so engrossed in lofty abstractions that little room is left for the trifling details of everyday living. Many of the fathers and most of the mothers are perfectionists. Obsessive adherence to set rules serves as a substitute for the enjoyment of life. These people, who themselves had been reared sternly in emotional refrigerators, have found at an early age that they could gain approval only through unconditional surrender to standards of perfection. It is interesting that, despite their high intellectual level, not one of the parents has displayed any really creative abilities. They make good teachers in the sense that they can transmit that which they have learned. They are essentially conservative repeaters of that which they have been taught. This is not quite true of many of the grandfathers, some of whom have established flourishing businesses, expounded original theories, or produced fairly successful pieces of fiction and art.”
From 617: “I have dwelt at some len
gth on the personalities, attitudes, and behavior of the parents because they seem to throw considerable light on the dynamics of the children’s psychopathologic condition. Most of the patients were exposed from the beginning to parental coldness, obsessiveness, and a mechanical type of attention to material needs only. They were the objects of observation and experiment conducted with an eye on fractional performance rather than with genuine warmth and enjoyment. They were kept neatly in refrigerators which did not defrost. Their withdrawal seems to be an act of turning away from such a situation to seek comfort in solitude.”
Over a decade later, Kanner continued with the refrigerator metaphor in this statement to a Time reporter, reported in “The child is father,” Time, July 25, 1960: “But there is one type of child to whom even Kanner cannot get close. All too often this child is the offspring of highly organized, professional parents, cold and rational—the type that Dr. Kanner describes as ‘just happening to defrost enough to produce a child.’ The youngster is unable, because of regression or a failure in emotional development, to establish normal relations with his parents or other people.”
These themes were also developed by Kanner’s colleague Leon Eisenberg; see his articles “The autistic child in adolescence,” American Journal of Psychiatry 112, no. 8 (February 1956); and “The fathers of autistic children,” American Journal of Orthopsychiatry 27, no. 4 (October 1957).
But Kanner’s attributions changed as understanding of the neurological basis of autism evolved. From a remembrance by his colleagues Eric Schopler, Stella Chess, and Leon Eisenberg, “Our memorial to Leo Kanner,” Journal of Autism & Developmental Disorders 11, no. 3 (September 1981), page 258: “The man credited with the term ‘refrigerator mother’ explained to the members of the National Society for Autistic Children, at their annual meeting in 1971, that the blame for their child’s autism implied by this term was now established as inappropriate and incorrect.”
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