618 Bruno Bettelheim’s notorious statement “The precipitating factor in infantile autism is the parent’s wish that his child should not exist” occurs on page 125 of The Empty Fortress: Infantile Autism and the Birth of the Self (1967).
619 Interview with Isabelle Rapin in 2009. Rapin has recently published a two-part professional memoir; see Isabelle Rapin, “Paths to the making of an academic clinical investigator,” pt. 1, Brain Development 33, no. 6 (June 2011); and pt. 2, Brain Development 33, no. 7 (August 2011).
620 Bernard Rimland posited a biological hypothesis of autism causation in Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior (1964).
621 Laura Schreibman, The Science and Fiction of Autism (2005), is the source of the refrigerator name-tag anecdote. From pages 84–85: “It is widely rumored that these first attendees wore name tags in the shape of little refrigerators.”
622 The quotation from Eustacia Cutler occurs on page 208 of her autobiography, A Thorn in My Pocket (2004).
623 Asperger’s original paper was published in German during World War II: Hans Asperger, “Die ‘autistischen psychopathen’ im kindesalter,” Archiv für Psychiatrie & Nervenkrankheiten (European Archives of Psychiatry and Clinical Neuroscience) 117, no. 1 (1944), pages 76–136. Uta Frith translated the paper into English in 1981, giving it the title “‘Autistic psychopathy’ in childhood”; that translation was later included in the anthology Autism and Asperger Syndrome (1991).
624 The little professor moniker’s first appearance in the professional literature occurs in Hans Asperger, “Die ‘autistischen psychopathen’ im kindesalter,” Archiv für Psychiatrie & Nervenkrankheiten (European Archives of Psychiatry and Clinical Neuroscience) 117, no. 1 (1944). From page 118: “Die aus einer Kontaktstörung kommende Hilflosigkeit dem praktischen Leben gegenüber, welche den ‘Professor’ charakterisiert und zu einer unsterblichen Witzblattfigur macht, ist ein Beweis dafür.” The phrase resurfaces from time to time in the popular media, such as in journalist Lawrence Osborne’s article “Little professor syndrome,”New York Times, June 18, 2000.
625 Tony Attwood’s Asperger’s Syndrome: A Guide for Parents and Professionals (1998) and The Complete Guide to Asperger’s Syndrome (2006) are both useful introductions. See also Uta Frith, “Asperger and his syndrome,” in Autism and Asperger Syndrome, edited by Uta Frith (1991); Ami Klin, Fred Volkmar, and Sara Sparrow’s book Asperger Syndrome (2000); and Sally Ozonoff et al., A Parent’s Guide to Asperger Syndrome and High Functioning Autism (2002).
626 On proposals for revisions to the DSM-5 diagnostic criteria for autistic spectrum disorders, see Claudia Wallis, “A powerful identity, a vanishing diagnosis,”New York Times, November 2, 2009; and Benedict Carey, “New definition of autism will exclude many, study suggests,” New York Times, January 19, 2012. For scholarly discussions of the DSM changes, see Mohammad Ghaziuddin, “Should the DSM V drop Asperger syndrome?,” Journal of Autism & Developmental Disorders 40, no. 9 (September 2010); and Lorna Wing et al., “Autism spectrum disorders in the DSM-V: Better or worse than the DSM-IV?,” Research in Developmental Disabilities 32, no. 2 (March–April 2011).
627 All of these anecdotes about social deficits of individuals with Asperger syndrome come from personal communications.
628 Temple Grandin’s story first came to widespread attention through the title essay in Oliver Sacks, An Anthropologist on Mars (1995), and through her autobiography, Thinking in Pictures: And Other Reports from My Life with Autism (1995). She has also been the subject of several television programs, including the 2006 BBC documentary The Woman Who Thinks Like a Cow, and the HBO biopic Temple Grandin.
The ASAN organizational website is at http://www.autisticadvocacy.org/. For an interview with Ari Ne’eman, see Claudia Kalb, “Erasing autism,” Newsweek, May 25, 2009.
629 Temple Grandin likened her mind to an Internet search engine in an interview with me in 2004. She had previously used the image in her autobiography, Thinking in Pictures: And Other Reports from My Life with Autism (1995), page 31.
630 The quotation from John Elder Robison occurs on page 2 of Look Me in the Eye: My Life with Asperger’s (2007).
631 This passage is based on my interview with Jennifer Franklin in 2008 and subsequent communications. The quotations from poems are from her book Persephone’s Ransom (2011).
632 My basic source on ABA is Laura Ellen Schreibman, The Science and Fiction of Autism (2005). Works by O. Ivar Lovaas include “Behavioral treatment and normal educational and intellectual functioning in young autistic children,” Journal of Consulting & Clinical Psychology 55, no. 1 (February 1987); and “The development of a treatment-research project for developmentally disabled and autistic children,” Journal of Applied Behavior Analysis 26, no. 4 (Winter 1993).
633 The passage from Scott Sea occurs in his article “Planet autism,” Salon, September 27, 2003. It has been condensed. In full: “When you see the balled-up pants and diaper on the floor you know you are too late. A bright red smear across the door, the molding, the wall. Turn the corner and the bedroom is a crime scene. An ax murder? In fact, it is only your daughter at her worst. (Worse than three days without sleep? Worse than ear-splitting screams that physically hurt, actually cause you to drop what you hold in alarm, compel you to shriek back at your delighted child who smiles at you sincere as a spring day?) Shit everywhere. Splashes of blood glistening like paint, black clots, yellow-brown feces, and a 3-foot-in-diameter pond of vomit that your daughter stands in the middle of, a dog-eared copy of Family Circle in one hand, reaching for the TV with the other. She is naked except for stockinged feet, blood soaked up to her ankles. Hands dripping, face marked like a cannibal, she wears an expression of utter bewilderment: What’s happened to me? Where am I? Is this good? Am I OK? There being nowhere to walk without stepping in some bodily emission, you throw bath towels down like a bridge to get to her.
“Stripping her unavoidably stains you. A bloody hand print on the square of your back as she balances herself when you roll down her sopping stockings. You hope she touches nothing else but what does it matter as the bathroom remains appalling in spite of the previous cleanups: cabinet handles encrusted with dried excrement, brown swipes on the light switch, corner of the mirror, shampoo bottle, Q-tips, ceramic figurines, curtain louvers. (Holiday guests take you aside to warn you of rodents in unusual locations. Ancient turds in drawers, inside books. You thank them. Apologize. Yeah, it’s an ongoing problem.)
“In the warm rain of the shower she proceeds to dig. She is excavating for what remains of the impacted stool, hard as a French roll. This entire episode, this habit, the result of some maddening control issue. The behaviorists, the gastroenterologists, the living-skills experts all suggest their strategies and therapies and videos and diets and oils and schedules. Certainly she knows what you want—appropriate toileting. And there are occasions when she does just that. Goes in, sits, finishes. This, maybe 5 percent of the time. Some huge, softball-size stool discovered in the toilet bowl. You shout for each other and gaze in wonder as at a rainbow or falling star. That’s how excited you are.”
634 Juliet Mitchell’s comments are from personal communications. She has written about autism in Mad Men and Medusas: Reclaiming Hysteri a (2000).
635 For a recent use of the changeling metaphor, see Portia Iversen, Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism (2006), pages xii–xiv: “It was his mind they came for. They came to steal his mind. Before anyone gave it a name, even before I knew what it was, I knew it was in our house. I can’t say exactly how I knew, except that I could feel it. Not that I wanted to, believe me. They were very very dark things and there was no way to get rid of them. Sometimes I could hear them late at night when the house was very quiet. A creaking sound, an inexplicable hiss, a miniscule pop, a whistle out of nowhere. And when I closed my eyes, I felt their shadows passing over me as they floated through the house and drifted invisib
ly with the smoke of the fireplace chimney out into space back to God knows where. I didn’t like to think about where they came from or where they were going. It was too frightening. Dov was only a baby and something was trying to steal him away. Sooner or later I knew I would catch them swirling above his crib. I knew that was what they did whenever I accidentally fell asleep. A violent thudding jolted my senses awake. My heart was banging like two fists in my chest. How long had I been sleeping? My eyes darted over to the crib I was supposed to be watching. He was still there. I could see him through the white wooden bars, asleep, his small body gently rising and falling with each little breath. Night after night I sat beside his crib. I knew he was slipping away from us, away from our world, and there was nothing I could do to stop it from happening. There was nothing anybody could do, they told me. So I did the only thing I could. I guarded him, although I knew it would do no good. Because I could not guard his mind. And then one day it had happened. He was gone.”
For scholarly discussion of changeling myths as a response to disability, see D. L. Ashliman, “Changelings,” Folklore & Mythology Electronic Texts, University of Pittsburgh, 1997, at http://www.pitt.edu/~dash/changeling.html; and Susan Schoon Eberly, “Fairies and the folklore of disability: Changelings, hybrids and the solitary fairy,” Folklore 99, no. 1 (1988). From Eberly: “Reidar Christiansen, in Hereditas, expresses the opinion that fairy belief arose in answer to some of the more puzzling of life’s mysteries—the questions of the ‘untimely death of young people, of mysterious epidemics among cattle, of climatic disaster, of both wasting diseases and strokes, of infantile paralysis and of the birth of mongol and otherwise deficient children.’
“Spence echoes this interpretation in his discussion of the fairy changeling: ‘Whenever a cretinous or diseased child made its appearance in a family, it was usually regarded as a changeling . . . The individual case was made to fit the superstition, and thus we possess no standardized data respecting the appearance of a changeling.’
“Various aspects of fairy belief which seem to be folk explanations for Christiansen’s ‘deficient’ and Spence’s ‘cretinous or diseased’ children will be discussed in this paper, using examples from the corpus of fairy lore in Britain. Specific examples of changelings, solitary fairies—both domesticated and reclusive—and the offspring of fairy-human matings will be presented which seem to offer identifiable portraits of children who were born, or who became, different as the result of identifiable congenital disorders which today are known to medical science.”
For two autistic activists’ perspectives, see Amanda Baggs, “The original, literal demons,” Autism Demonized, February 12, 2006, at http://web.archive.org/web/20060628231956/http://autismdemonized.blogspot.com/; and Ari Ne’eman, “Dueling narratives: Neurotypical and autistic perspectives about the autism spectrum,” 2007 SAMLA Convention, Atlanta, Georgia, November 2007, at http://www.cwru.edu/affil/sce/Texts_2007/Ne’eman.htm.
Baggs writes, “The following story may or may not be of an autistic person. It is certainly of a disabled person:
“‘Eight years ago [in the year 1532] at Dessau, I, Dr. Martin Luther, saw and touched a changeling. It was twelve years old, and from its eyes and the fact that it had all of its senses, one could have thought that it was a real child. It did nothing but eat; in fact, it ate enough for any four peasants or threshers. It ate, shit, and pissed, and whenever someone touched it, it cried. When bad things happened in the house, it laughed and was happy; but when things went well, it cried. It had these two virtues. I said to the Princes of Anhalt: ‘If I were the prince or the ruler here, I would throw this child into the water—into the Molda that flows by Dessau. I would dare commit homicidium on him!’ But the Elector of Saxony, who was with me at Dessau, and the Princes of Anhalt did not want to follow my advice. Therefore, I said: ‘Then you should have all Christians repeat the Lord’s Prayer in church that God may exorcise the devil.’ They did this daily at Dessau, and the changeling child died in the following year. . . . Such a changeling child is only a piece of flesh, a massa carnis, because it has no soul.
“That’s referenced in German Changeling Legends and usually attributed to Martin Luther (although it may have been one of his contemporaries), but the legends about us were pretty similar throughout many parts of Europe and European-conquered areas. We were stolen by demons or fairies and replaced with a changeling child, or an enchanted block of wood, or some other non-human thing. Or we were the result of a mating between the devil and a human woman. Whatever we were, we were quite literally demonized, cast in the role of demons, and the general advice was to get rid of us by any means necessary.
“This is interesting, because not a lot has really changed. The shape of the myth has remained the same, with new words replacing old ones depending on the area and era. Autistic people are still described as soulless. We’re still described as not quite, or not really, human (in a negative sense). We’re still supposed to be ‘rescued’ by any means necessary, even if the means of rescuing us is more dangerous than autism is. It’s interesting to go back to the ancient myths and find that it’s mainly the trappings that have changed.”
From Ne’eman’s paper: “In the present day, the ‘missing self’ canard—as well as defining the spectrum in reference to others rather than those actually on it—is ubiquitous in autism discussion. Jon Shestack, Portia Iverson’s husband and the co-founder of Cure Autism Now, writes, ‘This is the special curse of autism. You have your child, and yet you don’t have him. You have a shell, a ghost of all the dreams and hopes you ever had’ (‘More Can Changeling Rhetoric’). ‘I want my grandson back,’ announces Bob Wright, the founder of Autism Speaks, a major organization devoted to finding a cure for autism (Wright). ‘I had a perfectly normal baby. He hit all his developmental landmarks but after his first birthday. . . . My baby had been stolen away from us,’ states a mother of an autistic child. (‘Autism Spectrum Disorder Research Program 2007’). One autism parent memoir considered a ‘classic’— The Siege by Clara Claiborne Park—uses the ‘autism as child-thief’ metaphor at length, referring to the birth of an autistic child as akin to myths of fairies stealing babies in the night, only to replace them with mimicked shells of their former selves (C. Park). To quote Dr. Mitzi Waltz, a lecturer in Autism Studies at the University of Birmingham, ‘This metaphor is redolent of changeling myths, which may represent the oldest legends concerning autism as such. In these stories, the changeling must be killed, beaten, or abandoned, or the correct spell must be said, to force the return of the “real” child it replaced.’ (Waltz). Unfortunately, the acts of killing, beating, abandoning and even searching desperately for the correct ‘spell’ to ‘cure’ autism and thus return the hypothetical normal child are all too common amongst parents of autistic children, as they continue to play out the only autism paradigm most have ever known: a pyrrhic quest for a non-existent cure. This topic deserves further elaboration: what effect does the concept of cure have on parents who are reluctant to face the reality that the child born to them is different from the child they desired?
“. . . Autism Speaks broadcasts several television public service announcements informing us of the odds of a child achieving any one of a number of improbable events—starring in a Broadway show being one example—as compared to the much more likely odds of the viewer having a child with autism (Ad Council). The intended effect is clear. It is a call for parents to be afraid: if you dream for your children, if you aspire for them to achieve great things, then you should also fear for them—and donate to research for a ‘cure,’ lest the tragedy of autism take your child too. What is the result of following the fallacy of the missing self and the accompanying tragedy narrative of autism to its logical conclusion? If autistics are changelings—children not of this world and subject to the unspeakable presumption of tragedy that our modern media perception of autism is based upon—is it a surprise that some parents should try and excise the changeling, remove the cancer and thus e
nd the tragedy they view themselves as playing a part in? To those parents, who have been conditioned to believe that their children are less than whole and thus less than human, are they performing a true act of murder? A causal relationship exists between the rhetoric that reinforces a diminished value for autistic life and personhood and the implementation of that idea in the form of the murder of people on the autism spectrum.”
636 Martin Luther’s assertion that changelings were only soulless pieces of flesh comes from Werke, Kritische Gesamtausgabe: Tischreden (1912–21), vol. 5, page 9, as cited in D. L. Ashliman, “German changeling legends,” Folklore & Mythology Electronic Texts, University of Pittsburgh, 1997, http://www.pitt.edu/~dash/changeling.html.
637 The quotation from Walter Spitzer comes from his article “The real scandal of the MMR debate,” Daily Mail, December 20, 2001. In full: “The most important thing I have learned in the past 18 months is that autism is a terminal illness. Autistic children are never cured or, at least, so rarely as for it to be a medical curiosity. If the side-effect of MMR was death, the concern would be much, much larger, but a deferred death—and in the most severe cases that is what autism is, a dead soul in a live body—just does not generate the concern that it should.”
638 Amanda Baggs, Autism Demonized , privately published weblog, 2006.
639 This passage is based on my interview with Nancy Corgi in 2007. All names in this passage are pseudonyms.
640 With respect to the litany of medications, Anafranil (clomipramine) is a tricyclic antidepressant; Risperdal (risperidone) is an atypical antipsychotic used in the treatment of schizophrenia and mania; and Paxil (paroxetine) is an SSRI antidepressant.
641 Reviews of language impairment and language development in autism include Morton Ann Gernsbacher, Heather M. Geye, and Susan Ellis Weismer, “The role of language and communication impairments within autism,” in Language Disorders and Developmental Theory, edited by P. Fletcher and J. F. Miller (2005); and Gerry A. Stefanatos and Ida Sue Baron. “The ontogenesis of language impairment in autism: A neuropsychological perspective,” Neuropsychology Review 21, no. 3 (September 2011). For discussion on oral-motor function in autism, see Morton Ann Gernsbacher et al., “Infant and toddler oral- and manual-motor skills predict later speech fluency in autism,” Journal of Child Psychology & Psychiatry 49, no. 1 (2008).
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