Abstract
The lay public inherits much of its information about disability and mental illness through the media, which often relies on information from popular scientific works. Autism, as it was defined during the dominance of psychogenic paradigms of mental illness, generated certain tropes surrounding it, many of which have been popularized through media representations. Often inaccurate, these tropes have persisted into contemporary times despite a paradigmatic shift from psychogenic to biological explanations and treatments for mental illness. The current article examines images and articles of children with autism from the 1960s and the early 2000s in major news media and scientific literature to highlight the persistence of themes of fragmentation and the imprisonment of children with autism. While these themes have persisted in psychological and media literature, narratives of people with autism and their families often present a different perspective. This results in two divergent ‘realities’ of autism being disseminated into the general public.
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Notes
O. Wahl, Media Madness: Public Images of Mental Illness (New Brunswick: Rutgers University Press, 1995), 2.
Ibid., 3.
Wahl, Media Madness.
Images and representations are always subject to social construction and cannot truly depict reality; however, I use the word ‘reality’ to discuss what is intended to be understood as truth and actuality seen in images and representations.
P.C. Durbin-Westby, “‘Public Law 109–416 Is Not Just about Scientific Research’: Speaking Truth to Power at Interagency Autism Coordinating Committee Meetings.” Disbility Studies Quarterly 30, No. 1 (2010), http://www.dsq-sds.org/article/view/1070/1245 (accessed March 23, 2010).
Recent works include: G. Berks-Abbot, “Mark Haddon’s Popularity and Other Curious Incidents in My Life as an Autistic,” Autism and Representation, ed. M. Osteen (New York, Routledge, 2008), 289–296; A.D. Baker, “Recognizing Jake: Contending with Formulaic and Spectacularized Representations of Autism in Film,” Autism and Representation, ed. M. Osteen (New York, Routledge, 2008), 229–243; P.C. Durbin-Westby, “‘Public Law 109–416 Is Not Just about Scientific Research’: Speaking Truth to Power at Interagency Autism Coordinating Committee Meetings;” S. Murray, Representing Autism: Culture, Narrative, Fascination, (Liverpool: Liverpool University Press, 2008); M. Osteen, “Autism and Representations: A Comprehensive Introduction,” Autism and Representation, (New York, Routledge, 2008), 1–48.
S. Baron-Cohen,The Essential Difference: Male and Female Brains and the Truth About Autism. (New York: Basic Books, 2003); A. Feinstein, A History of Autism: Conversations with Pioneers, (New York: Wiley-Blackwell, 2010).
I. Hacking, “Autistic autobiography,” Philosophical Transactions of the Royal Society B, 27 (2009).
A.W. Frank, The Wounded Storyteller: Body, Illness, and Ethics (Chicago: The University of Chicago Press, 1995), 115.
J.L. Scully, Disability Bioethics: Moral Bodies, Moral Difference, (Lanham: Rowman & Littlefield Publishers, Inc, 2008).
I am focusing on the 1960s as a comparison to the most recent images because at this time, autism was gaining recognition in scientific and public spheres. Additionally, the 1960s began with the dominance of the psychoanalytic paradigm. M.H. Nadesan, Constructing Autism: Unravelling the ‘Truth’ and Understanding the Social (London: Routledge, 2005)
R. Garland-Thomson, “Seeing the Disabled: Visual Rhetorics of Disability in Popular Photography,” The New Disability History: American Perspectives, ed. P. K. Longmore and L. Umansky (New York: New York University Press, 2001), 336.
R. Garland Thomson, Staring: How We Look, (Oxford: Oxford University Press, 2009), 165.
ASDs are diagnosed by professionals from observations of behaviors making static images of autism reliant on contextual cues to portray the condition.
Murray, Representing Autism.
S.L. Gilman, Seeing the Insane (New York: John Wiley & Sons, 1982), xii.
Ibid., 339.
Briefly, the wondrous portrays the subject in exceptional situations that connote overcoming the disability to perform almost supra-human tasks. Sentimental images are those that evoke pity from the viewer: exotic images sensationalize the disabled while allowing the (non-disabled) viewer to view, or stare, at a distance for the purposes of entertainment and spectacle. Finally, the realistic category attempts to normalize the disability while simultaneously portraying it as a condition the viewer would want to avoid.
Garland-Thomson, “Seeing the Disabled.”
Murray, Representing Autism.
Such as including more ethnic and age diversity.
Another commonly misrepresented theme is that of an extreme unawareness of others, often referred to a lack of “theory of mind”. This misconception has been explored in other works including: D. Smukler, “Unauthorized Minds: How ‘Theory of Mind’ Theory Misrepresents Autism.” Mental Retardation 43, No. 1 (2004): 11; R. Savarese, Reasonable People: A Memoir of Autism and Adoption: On the Meaning of Family and the Politics of Neurological Difference (New York: Other Press, 2007).
This message is also expressed through the widespread use of a puzzle piece to represent autism, which some see as an inappropriate metaphor for the condition and those diagnosed. Smukler, “Unauthorized Minds.”
B. Bettelheim, The Empty Fortress: Infantile Autism and the Birth of the Self, (New York: Simon & Schuster, 1967); see also, H.H. Eveloff, “The Autistic Child,” Archives of General Psychiatry, 3 (1960): 66.; E. Schloper, “The Development of Body Image and Symbol Formation Through Bodily Contact with an Autistic Child,” Journal of Child Psychology and Psychiatry and Allied Disciplines 3 (1962): 191.; K. Soddy, “The Autistic Child,” The Practitioner 192 (1964): 525.
Leo Kanner first equated parents to coldness and refrigeration, but it was Bruno Bettelheim who promoted the use of the term, “refrigerator mothers” to describe the cold, detached mother that caused autism in children (Bettelheim 1967). He published much of his work in popular magazines and and newspapers, widely influencing public perception of autism at that time. R. Pollak, The Creation of Dr. B: A Biography of Bruno Bettelheim (New York: Simon & Schuster, 1997).
Bettelheim, The Empty Fortress; Eveloff, “The Autistic Child.”
For example see H. Clancy, A. Dugdale, and J. Rendle-Short, “The Diagnosis of Infantile Autism,” Developmental Medicine and Child Neurology 11 (1969): 432.; S. R. Lewis and S. Van Ferney, “Early Recognition of Infantile Autism,” The Journal of Pediatrics 56, No. 4 (1960): 510.; L. Sahlmann, “Autism of Aphasia?” Developmental Medicine and Child Neurology 11 (1969): 443.
For example, see Clancy, et al., “The Diagnosis of Infantile Autism”; J. K. Wing, “Epidemiology of Early Childhood Autism,” Developmental Medicine and Child Neurology 5 (1963): 646.
Clancy et al., “The Diagnosis of Infantile Autism”, 439
U. Aurnhammer-Frith, “Emphasis and Meaning in Recall in Normal and Autistic Children,” Language and Speech 12 (1969): 29; M. K. DeMyer, N. A. Mann, J.R. Tilton, and L.H. Loew, “Toy-Play Behavior and Use of Body by Autistic and Normal Children as Reported by Mothers,” Psychological Reports 21 (1967): 973; E. A. Frommer, “Autistic Children.” Public Health 80 (1966): 279; E.M. Ornitz, “Disorders of Perception Common to Early Infantile Autism and Schizophrenia,” Comprehensive Psychiatry 10 (1969): 259.
For example, see G. Dawson, S. Webb, G.D. Schellenberg, S. Dager, S. Friedman, R. Aylward, and T. Richards, “Defining the Broader Phenotype of Autism: Genetic, Brain, and Behavioral Perspectives,” Development and Psychopathology, 14 (2002): 581; U. Frith, Autism: A Very Short Introduction, (Oxford: Oxford University Press, 2008); J.R. Hughes, “Update on Autism: A Review of 1300 Reports Published in 2008,” Epilepsy & Behavior 16 (2009): 569; D.K. Kinney, D.H. Barch, C. Bogdan, S. Napoleon, and K. M. Munir. “Environmental Risk Factors for Autism: Do They Help Cause De Novo Genetic Mutations That Contribute to the Disorder?” Medical Hypotheses 75, No. 1 (2010): 102.
For example, see: L.J. Rudy, “Autism: Marriage and the Child with Autism,” About.com, http://autism.about.com/od/copingwithautism/a/marriage.htm (accessed on May 3, 2010); Autism Speaks, “Coping,” Autism Speak, http://www.autismspeaks.org/howtocope/strategies.php. (accessed on May 3, 2010); National Autistic Society, “Families: The Impact on Autism,” The National Autistic Society, http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=307&a=3342. (accessed on May 3, 2010).
For example, the controversial video “Autism Everyday” which was created by the advocacy group Autism Speaks; Autism Speaks, “Autism Everyday,” Autism Speaks, http://www.youtube.com/watch?v=FDMMwG7RrFQ. (accessed on March 29, 2010).
R.W. Huppke, “Autistic Powerlifter’s Quest,” Chicago Tribune, 10 December 2007.
Note that there was little information garnered from Jamie himself, reflecting a general distrust of autistic autobiography and voices. Jackie Leach Scully describes this “testimonial injustice” as a major source of disbelief of disability narratives (J.L. Scully, Disability Bioethics: Moral Bodies, Moral Difference) which presents a barrier to the acceptance of these representations over other misinformed narratives.
See K. Boundy, “‘Are You Sure, Sweetheart, That You Want to be Well?’: An Exploration of the Neurodiversity Movemen,.” Radical Psychology: A Journal of Psychology, Politics & Radicalism 7, No. 2 (2008).
C.C. Park, The Siege: A Family’s Journey Into the World of an Autistic Child, (New York: Back Bay Books, 1967); C.C. Park, Exiting Nirvana: A Daughter’s Life with Autism, (Boston: Little, Brown, and Company, 2001).
T. Grandin and M.M. Scariano, Emergence: Labeled Autistic (Novata, CA: Arena Press, 1986); T. Grandin, Thinking in Pictures and Other Reports from My Life with Autism, (New York: Vintage Books, 1995).
See M. Blastland, The Only Boy in the World: A Father Explores the Mysteries of Autism, (London: Da Capp Press, 2006; P. Collins, Not Even Wrong: Adventures in Autism, (New York: Bloomsbury, 2004); Park, The Siege.; Park, Exiting Nirvana.
C. Schall, “Family Perspectives on Raising a Child with Autism.” Journal of Child and Family Studies, 9, No. 4 (2000).
Grandin, Thinking in Pictures.
B. Ventura, “Apergian Pride,” http://www.aspergianpride.com/, retrieved July 2, 2010.
L. Kanner, “Autistic Disturbances of Affective Contact,” Nervous Child 2 (1943): 248.
See Clancy, et al., “The Diagnosis of Infantile Autism.”
See Scholper, “The Development of Body Image;” Soddy, “The Autistic Child.”
See, Eveloff, “The Autistic Child;” Frommer, “Autistic Children;” Soddy, “The Autistic Child.”
Ibid., 92.
N. Jaffe, “Help for the Deeply Disturbed Child,” New York Times, 22 February 1966.
For example see, Frith, Autism: A Very Short National Research Council, Educating Children with Autism, Committee on Education Interventions for Children with Autism, eds. C. Lord and J. P. McGee, (Washington DC: National Academy Press, 2001); B. Reichow and M. Wolery, “Comprehensive Synthesis of Early Intensive Behavioral Interventions for Young Children with Autism Based on the UCLA Young Autism Project Mode,” Journal of Autism and Developmental Disorders 39, No. 1 (2009).
P. Offit, Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure, (New York: Columbia University Press, 2008).
This is the theory that childhood vaccinations cause autism because of the preservatives they contain. Although several epidemiological studies have failed to find a link, popular support for this notion remains strong.
Generation Rescue, “Generation Rescue: Autism is Reversible,” Generation Rescue, http://www.generationrescue.org/ (accessed May 2, 2010).
C. Wallis, “Autism,” Time Magazine, August 1, 2007.
As David Smukler explains, the puzzle piece has been the logo for the Autism Society of America, and thus an international symbol of autism, for many years. However, the symbol is contested by many advocates due to its association with incompleteness and mystery (Smukler, “Unauthorized Minds”).
J.W. Trent, Inventing the Feeblemind: A History of Mental Retardation in the United States, (Berkeley: The University of California Press, 1994).
Boundy, “‘Are You Sure, Sweetheart, That You Want to be Well?; see also K. Seidel, “Neurodiversity Weblog: News, Opinions, Letters, Readings, Announcements,” neurodiversity.com. http://www.neurodiversity.com/main.html. (accessed May 1, 2010).
Durbin-Westby, “‘Public Law 109–416 Is Not Just about Scientific Research.’”
O. Sacks, An Anthropologist on Mars: Seven Paradoxical Tales, New York: Vintage Books (1995).
A.M. Baggs, “In My Language,” http://www.youtube.com/watch?v=JnylM1hI2jc (accessed May 2, 2010).
Scully, 129.
F. Campbell, Contours of Ableism: The Production of Disability and Abledness, New York: Palgrave Macmillian. (2009).
Acknowledgements
I would like to thank Dr. Sander Gilman for his support and guidance through this project. In addition, I would like to thank the other authors of this special issue who also supported the creation of this current article. Finally, I would like to acknowledge Emory University’s Institute of Liberal Arts for the opportunity to work with this group of scholars.
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Sarrett, J.C. Trapped Children: Popular Images of Children with Autism in the 1960s and 2000s. J Med Humanit 32, 141–153 (2011). https://doi.org/10.1007/s10912-010-9135-z
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DOI: https://doi.org/10.1007/s10912-010-9135-z