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Autism and Representation
Case Western Reserve Univ
Cleveland, Ohio
28-30 October 2005



Ann Jurecic
Rutgers University
Do not cite without permission of author.

"Mindblindness: The Problem of Empathy in the Representation of Autism"

Until relatively recently, autism has been defined from the outside.   Because those with the condition may not have the language or the inclination to write or speak about their experiences, the story of what they know and who they are has long been unavailable or unrecognized. In the midst of this real and perceived silence, autism researchers have defined a fundamental characteristic of autism as the absence of a "theory of mind."   The general scientific consensus is that people with autism lack the ability "to attribute mental states (such as beliefs, desires, intentions, etc.) to themselves and other people, as a way of making sense of and predicting behavior." 1 In other words, according to this hypothesis, people with autism do not develop a capacity for intellectual or emotional empathy; they suffer instead from what is sometimes called "mindblindness." 2 It may well be that many people with autism lack a theory of mind. It is also the case, however, that imagining the minds of others is a complicated task for everyone.   Theorizing or imagining other minds is indeed far easier for those of us who are neurotypical because most other minds are similar to our own.   To extend this observation, we should also recognize that when most of us try to imagine an autistic mind, we, too, tend to get into trouble.

Stunning examples of such failures of empathy can be found in scholarship about autism from the early to mid-twentieth century. Although people with autism have been labeled "mindblind," case studies by Melanie Klein and Bruno Bettelheim suggest that, in fact, even eminent scholars may be mindblind in their own ways. Even when hearts appear to be in the right place, researchers from across the disciplines in medicine, education, and the humanities risk infusing our understanding of autism with our own metaphors and framing it with underdetermined theories. This threat of misinterpretation may be especially acute today, when autism's rise and society's growing awareness have given the disorder an increasingly powerful cultural resonance. The challenge, then, to writers, researchers, and scholars in the present, as in the past, is to figure out how to write about and theorize minds that do not possess what seems so fundamental a capacity for the social human, how to theorize minds with which we cannot fully empathize--to which we are, in many ways, blind.   One response to the dangers of misinterpretation is to turn our backs on empathy. If we refuse to empathize, however, we risk remaining at too great a distance; we risk disengagement and indifference. How then is it possible for those of us who do not have autism to understand and represent those who do? An answer to this question, using insights from rhetorical theory, is to define a new empathetic practice that is both informed and reflective, that remains attuned to and respectful of difference.  

Let us begin, however, with the mindblind past.   In reading through historical documents about autism, I have come across two case studies of rhetorical interest: Melanie Klein's 1930 essay, "The Importance of Symbol Formation in the Development of the Ego" and Bruno Bettelheim's 1959 Scientific American article, "Joey, A 'Mechanical Boy.'"   Bettelheim's study is ultimately of greater interest, but Klein's is significant not only for what it demonstrates about early theories of autism (before "autism" was even defined), but also because it lays the groundwork for Bettelheim's later writings.   Klein begins her study of an autistic child, whom she names Dick, by offering a framework for normal child development. 3 There is, she asserts,   "an early stage of mental development at which sadism becomes active at all the various sources of libidinal pleasure." At this time, the child's "dominant aim is to possess himself of the contents of the mother's body and to destroy her by means of every weapon which sadism can command." 4 Thus, she explains, "the excess of sadism gives rise to anxiety and sets in motion the ego's earliest modes of defence." 5 She concludes her construction of normal childhood ego development by stating that this anxiety gives impetus to a "mechanism of identification" by which the child equates the organs that are the source of anxiety (the "penis, vagina, [and] breast") with other things on which the child then places the anxiety . 6 "Thus," concludes Klein, "not only does symbolism come to be the foundation of all phantasy and sublimation but, more than that, upon it is built up the subject's relation to the outside world and to reality in general." 7

By this logic, it is evident to Klein that a child who thinks literally, not symbolically, and who has not developed a typical relation to the outside world, is profoundly delayed in psychological development.   This is, indeed, how she interprets Dick's case. Rather than finding him to express "normal" sadism, she sees him as incapable of aggression, and concludes that he has developed strong defenses against aggressive impulses that have locked him into a pre-symbolic phase; he cannot express his sadistic relation to his mother's body, and thus he cannot develop the symbolic sense that will enable him to connect with the world. Klien's study is unsettling in the context of current thinking about autism. Her construction of Dick is, from a contemporary perspective, severely weakened because she adheres to a rigid framework that does not enable her to read his mind as much as it claims him as confirmation of her theory and builds a fortress of words around him.   The frameworks available to Klein enable her to recognize only a single theory of the "normal" mind. She is unable to see the possibility of a spectrum of minds.

Nearly thirty years after Klein composed her case study of Dick, and more than a decade after Leo Kanner and Hans Asperger defined autism, Bruno Bettelheim published a compelling case study in Scientific American entitled "Joey, A 'Mechanical Boy.'" This article reinscribes Freudian theory for a new age of diagnosis, and yet, because the biological etiology of autism remained a mystery at this time, Bettelheim's narrative, like Klein's, is driven by a theoretical argument that can only account for the autistic mind as a failure because it is not like the "normal" mind.   Joey's autistic withdrawal expresses itself, Bettelheim tells us, through his belief that he is a machine.   "He functioned," Bettelheim writes,

as if by remote control, run by machines of his own powerfully creative fantasy. Not only did he himself believe that he was a machine but, more remarkably, he created this impression in others. Even while he performed actions that are intrinsically human, they never appeared to be other than machine-started and executed. On the other hand, when the machine was not working we had to concentrate on recollecting his presence, for he seemed not to exist. 8

Bettelheim concludes with the haunting assertion that, "Joey was a child who had been robbed of his humanity." 9

In the story of Joey's mechanical endeavors, which involve every part of his daily life, from sleeping to eating to defecating (a process Bettelheim dwells upon with Freudian fervor), what is significant to Bettelheim is less what the narrative reveals about autism than what it reveals about "emotional development in a machine age." 10 Joey, he decides, finds it too painful to be human, a disconcerting judgment. Bettelheim believes that Joey has sublimated his humanity for two reasons--both because of his "detached" and "indifferent" mother, whom Bettelheim accuses of completely ignoring her son, and because he is a child of a materialistic culture. 11 In the context of this case study, it is worth remembering that the term "refrigerator mother" was regularly used in connection with Bettelheim's theories of autism. Bettelheim maintained that emotionally withdrawn and unloving parents, particularly mothers, were largely responsible for autism. At one point, he astonishingly asserted that "the precipitating factor in infantile autism is the parent's wish that his child should not exist." 12 In Joey's case, however, the mother is not the primary focus of Bettelheim's blame. Instead, he finds the origin of Joey's disorder in the current era of material excess. Bettelheim--a concentration camp survivor who knew what it meant to live without material comforts--observes that:   "At the extreme where utter scarcity reigns, the forming of relationships is certainly hampered. But our society of mechanized plenty often makes for equal difficulties in a child's learning to relate." 13 Parents in earlier years, he says, expended effort and took pleasure in being able to give to their children, which in turn enabled the children to develop "a sense of personal worth" and thus the foundation for social relations. He warns, however, that when providing comfort becomes too easy in times of plenty, parents get no pleasure from giving, and children develop no sense of worth. 14 In the service of this moral about how our attachment to the material has left us starved for humanity, Bettelheim weaves Joey into a metaphor-laden, machine-age fairy tale for the readers of Scientific American about how our attachment to the material has left us starved for humanity and displaced true empathy for one another.

As a fairy tale, this story is uplifting. Readers receive confirmation of the importance of parental love and care, the dangers of materialism, and even the risks of early toilet training. Ultimately, however, when Bettelheim tells us at the end of the article that Joey made a Memorial Day float with the slogan "Feelings are more important than anything under the sun," it appears Joey has been transformed for the purposes of a moral and medical fiction, as Dick was transformed in Klein's earlier case study. 15 Thus, Bettelheim's text demonstrates again the distortions that can be generated when we impose our own frameworks on another's silence.

Bettelheim, of course, did not recognize these distortions, and they persisted into his later, more theoretical writing on autism, The Empty Fortress .   In this text, written well before deep neurological understanding of autism, Bettelheim reveals the central role of his personal experience in shaping his scholarly theories.   He reiterates familiar arguments about autism and also asserts that autism is a parallel disorder to the "extinction of feeling" suffered by some concentration camp prisoners. To introduce this analogy, he writes:   "In the German concentration camps I witnessed with utter disbelief the nonreacting of certain prisoners to their most cruel experience." 16 Then, he continues, making the link to autism, "I did not know and would not have believed that I would observe similar behavior in the most benign of therapeutic environments, because of what children had experienced in the past." 17 He had seen prisoners who felt helpless and doomed "deteriorate[] to near autistic behavior when the feeling of doom penetrated so deep that it brought the added conviction of imminent death." 18 Children with autism, he believes, have an "inner reality" comparable to the "external reality" of the prisoners and, like them, direct all their energy into a defensive withdrawal .19 Their absence of language, he claims, should be recognized as a "defense against emotional pain or any further depletion of the self." 20 Thus, he concludes that "infantile autism is a state of mind that develops in reaction to feeling oneself in an extreme situation, entirely without hope." 21 Here we have an extraordinary symbolic equation in which Bettelheim draws on his own experience and his formative psychological observation of reactions to brutal mistreatment. In order to understand human behavior that defies explanation, Bettelheim turns to the only experience he can compare to what he observes. The analogy to the concentration camps inspires him. It enables him to begin, he thinks, to understand the mysterious silence of autism. And his memory of these withdrawn men, avoided by the other prisoners "as if in fear of contagion," helps him to think about their experience and autism in terms with which he himself can clearly identify. 22

As moving as Bettelheim's elaborate analogy may be, however, it is like the cancer and AIDS metaphors Susan Sontag argues against in Illness as Metaphor and AIDS and Its Metaphors ; it distorts more than it enlightens, for it causes Bettelheim to assume analogous causes--to assume that people with autism, like concentration camp prisoners, suffered from abuse, and that the absence of language is necessarily a reaction to fear. He assumes, as well, that capacities for communication and empathy are essential characteristics of humanity and that divergence from this ideal indicates a being who is less than human. There is such personal pain and such an effort at empathy behind Bettelheim's analogy, but with few medical facts to turn to, his reliance on his own empathy and the limitations of a Freudian framework give him an incomplete picture of the minds he seeks to understand. Far from enabling him to be a mindreader, empathy contributes to making Bettelheim mindblind.  

The examples of Klein and Bettelheim point to problems with empathy that are likely familiar to many of us: empathy is unreliable and can become a tool of coercion used by those with greater social, cultural, or political power to usurp the voices of those with less power.   In the field of contemporary rhetoric, Klein's and Bettelheim's misinterpretations would readily be seen as confirmation of the discipline's commonplace argument against empathy. Although empathy has historically been central to rhetorical studies, rhetorician Dennis Lynch observes that more recently it "has been scrutinized, critiqued, and all but abandoned" by those who maintain that empathetic rhetoric most often requires those without power to divide themselves between the speaker or writer and their own marginalized selves. 23 Rhetoricians are rightly disturbed, Lynch observes, that common conceptions of empathy depend on "the physical, bodily displacement of the other." 24 That is, when those in less powerful positions are coerced to empathize with those who have more, empathy reveals itself to possess a political dimension that perpetuates, indeed magnifies, existing differences in power while erasing other personal and cultural differences. 25

Although in recent years rhetoric and the humanities have turned away from empathy because it is politically suspect, in medicine there has been an opposite turn toward practices that nurture the interpersonal skills of emotional, linguistic, and narrative attunement.   At Columbia University, for instance, Rita Charon, a general internist and professor of clinical medicine, as well as a Ph.D. in English, runs a program in narrative medicine that is explicitly designed to teach physicians how to be more empathetic with their patients. 26 Charon, the current editor of the journal Literature and Medicine and also co-editor of Stories Matter: The Role of Narrative in Medical Ethics , asserts that one of the primary duties of health care is "to bear witness to patients' suffering and to honor their experiences of illness." 27  This generation of meaning is best accomplished, she maintains, by listening with "narrative competence" to the patients' stories and by imagining illness through the conflicting perspectives of their narratives. 28 In a health care system that is closer to ideal, doctors and nurses would learn to think and feel from within a patient's experience.  

We have here a paradoxical divide: the "two cultures" of science and the humanities remain opposed, but their positions have reversed.   Traditionally humanistic values have been embraced within medicine, while empathy has meanwhile been rejected by many in the humanities as a linguistic construction that conceals an exercise of power.   How did we get here?   Is empathy a problem, or isn't it?  

In fact, in this backward disciplinary divide, each side makes its errors, and each side has its points.   It is important, I believe, for those in medicine to consider the criticism leveled at empathy by those in rhetoric, and to recognize its unreliability and potential for abuse. Nevertheless, I am also concerned that if we try to uproot empathy, we may abandon the possibility of ever attempting to understand each other.   Thus, I am relieved that Dennis Lynch, who seeks to rescue empathy from the trash heap of rhetoric, offers a solution to the problem of the displacement caused by empathy that is applicable to the puzzle of how to write about autism.   In his article, "Rhetorics of Proximity: Empathy in Temple Grandin and Cornel West," he maintains that we should attend to writing that "keeps the body squarely at the center of rhetorical exchange," writing that works "[b]y soliciting empathy from us, but by also emphasizing certain of the problems with empathy." 29 We should not renounce empathy, in other words; instead we should define and practice empathy with greater care.  

Lynch offers examples of writing that generates complex, reflective empathy, such as Cornel West's speech, "Race Matters," and--more important for my argument--the autobiography of Temple Grandin, Thinking in Pictures: and Other Reports from My Life with Autism .   Grandin's text, like West's, insists on bodily experience, invites empathy, and also draws attention to the possibilities and limits of emotional identification. West's use of empathy, for instance, asks listeners and readers to reflect on their raced selves and bodies and the history and social dynamics that complicate our understandings of ourselves and these issues. Lynch maintains that West thus "maneuver[s] us into difficult positions that have the potential, through stress, to encourage us to change/refuse who we are." 30  Because Grandin's issues are different, her approach is different.   Her autobiography at first seems to elicit empathy from her readers by inviting them into her world.   But while she represents herself as being on a continuum of humanity with her readers, she simultaneously and continuously offers examples that show they can never fully understand the difference of her mind. The accompanying lessons about empathy are that humanity, like autism, exists on a spectrum, and that although the differences between Grandin and others can never fully be bridged, the effort to do so must be made, even if it will often be disappointed.

In unpacking the complex operation of empathy between Grandin and her readers, Dennis Lynch enables us to reconsider and complicate the rhetorical critique leveled at empathy.   He describes both Grandin and West as practicing "rhetorics of proximity." Such rhetorics, he argues, offer a solution to the dangers of empathy because they accept understanding as approximate and partial, rather than transparent and total. Texts that employ rhetorics of proximity offer invitations to approximate understanding, "seduce us into ambiguous social spaces," draw attention to the obstacles to valid empathy, and then "us[e] those obstacles as possibilities for social exchange rather than as reasons for refusing interaction." 31 Rhetorics of proximity, in other words, reinvigorate the practice of empathy while recognizing that empathy is always incomplete and in need of careful exploration and critical examination.

I am convinced that the concept of rhetorics of proximity can begin to rescue interaction and action from the critical bind that has so successfully revealed the problems inherent in empathy when difference is ever-present, layered, and multiple.   And yet, I wonder about the limitations of Lynch's two examples - Temple Grandin and Cornel West - both of whom insist on making their bodies - neurological and raced - central to their interaction with their audiences. Is thinking through one's own personal and embodied experience the only legitimate way to elicit or exercise empathy?   What about those who seek to understand or give voice to ideas informed by experiences different from their own? What about the possibility of empathetic scholarship about autism?

I have found an example of writing and thinking effectively and empathetically about others, an example that expands upon the concept of "rhetorics of proximity" offered by Lynch, in another text about Temple Grandin--not her autobiography, but rather Oliver Sacks's biographical essay "An Anthropologist on Mars."   Sacks has, throughout his medical and literary career, found writing and narrative to be central to making sense of the strange and disorienting world of neurological disorders, and narrative is essential in his discussion of autism. Because Sacks wants his readers to understand autism beyond the clinical diagnosis, and because he recognizes that "no two people with autism are the same," he makes the surprising claim that "if we hope to understand the autistic individual, nothing less than a total biography will do." 32 In composing a biographical essay about Grandin, Sacks cannot, however, create a rhetoric of proximity with his own readers.   Rather, I believe he narrates his own rhetorical proximity to Grandin as he spends a weekend visiting and interviewing her, listening, learning, and weighing her stories and beliefs against his own expertise in neurology. He recognizes that she remains a puzzle to him (as he does to her), but she is a puzzle well worth engaging.

Sacks cannot create an authentic experience of approximate empathy for his readers, but this does not mean that he has nothing to contribute to the conversation.   In describing such an experience, and in openly negotiating his understanding of autism with Grandin, he demonstrates an alternative form of scholarship that is empathetic because it is negotiated, built in dialogue with his subject. At times, he holds to his medical expertise, but he also allows Grandin to complicate and change his theory of the autistic mind. Sacks is initially resistant, for instance, when Grandin claims that the differences in her "emotional circuit" mean she has no unconscious, no repressed thoughts.   "Either you are incorrect," he thinks, "or there is an almost unimaginable difference of psychic structure. Repression is universal in human beings." 33 But then he thinks again. He recalls his experience with patients who had suffered illnesses or injuries to the brain and revises his reaction, appreciating anew the differences that neurology makes. Elsewhere, a simple question about the night sky--"Do you get a feeling of its grandeur?"--opens Grandin's thinking to her wonder about death, morality, divine judgment, and her scientific notion of God. 34 This response stimulates Sacks's own reflection, for as much as he knows about autism, he had never before considered the spiritual lives of people with autism.

Sacks extends his open borders beyond interpersonal relations as he also mediates between areas of scholarly inquiry that may not typically be thought to have any bearing on one another. As his essay bridges scientific inquiry and what could be called spiritual questioning, it also joins biography and neurology, and the study of mind and body. In crossing these borders, Sacks connects empathetic engagement and interdisciplinary thinking.   He elides the differences, for instance, between the expert and the amateur, the physician and the patient. This practice constitutes something slightly different from most interdisciplinary work in that Sacks does not limit his own position or his sources according to the convention or methodology of any discipline or set of disciplines. Instead, he brings to bear the breadth of his knowledge and experience, as well as his innovative talents and personal quirks, to join the story of the body and the life.

Ultimately, the complexity of the neurological puzzle Sacks is trying to solve challenges him to create a composition of proximity, a way of writing that enables him to employ his own expertise and also to learn from other people and through other realms of knowledge.   This mode of composing lends Sacks's representation of autism a strength that is lacking in both Klein's and Bettelheim's more insular approaches. Granted, Klein and Bettelheim did not have access to the scientific knowledge that upholds the integrity of Sacks's text, but they also prized narrative coherence over appreciation for the complexity of the problem.   In addition, as the errors in their interpretations demonstrate, the narrowness of their perspectives and their exclusion of proximate knowledge prevented them from reflecting sufficiently on those moments of tension when their patients' experience chafed against their rigid explanatory structures.   Finally, because their knowledge was limited, their empathetic responses to their patients were also deeply flawed.  

I do not want to be mistaken as saying that Sacks's writing provides the only appropriate model of an outsider's representation of autism; nor do I want to be seen as arguing that his practices lead to a singularly valid medical understanding of this complex neurological puzzle.   Instead, I want to recognize Sacks's writing--his practice of creating compositions of proximity --as offering an important reminder that empathy and reason are not a binarism, and that well-researched and humanistic approaches to disease, disorder, and disability should not be contained by a single biomedical, psychoanalytic, metaphoric, or other framework.   Sacks's essay about Temple Grandin affirms the critique of postmodern theory that empathy can only be approximate, but it also demonstrates that reflective empathy can contribute to emotional and intellectual understanding and provide an alternative to scholarly disaffection and disengagement.

Works Cited

Baron-Cohen, Simon.   Mindblindness: An Essay on Autism and Theory of Mind .   Cambridge, Mass.: M. I. T. Press, 1995. 

Bettelheim, Bruno. "Joey: A 'Mechanical Boy.'" Scientific American 200: 116-27.

------. "Strangers to Life." In The Empty Fortress , 50-85. New York: Free Press/Macmillan, 1967.

Charon, Rita. "The Narrative Road to Empathy." Spiro : 147-59.

Charon, Rita, and Martha Montello. "Memory and Anticipation: The Practice of Narrative Ethics." Stories Matter: The Role of Narrative in Medical Ethics . New York: Routledge, 2002.

Holloway, Marguerite. "When Medicine Meets Literature." Scientific American (May 2005): 38-39.

Klein, Melanie. "The Importance of Symbol Formation in the Development of Ego." In The Selected Melanie Klein. , edited by Juliet Mitchell, 95-111. New York: Free Press, 1986.

Lynch, Dennis. "Rhetorics of Proximity: Empathy in Temple Grandin and Cornel West." Rhetoric Society Quarterly 28.1: 5-23.

Sacks, Oliver. "An Anthropologist on Mars." In An Anthropologist on Mars: Seven Paradoxical Tales , 244-96. New York: Vintage, 1995.

Sontag, Susan. Illness as Metaphor and Aids and Its Metaphors . New York: Doubleday, 1988.

Tager-Flusberg, Helen, Simon Baron-Cohen, and Donald J. Cohen. "An Introduction to the Debate." In Understanding Other Minds: Perspectives from Autism , edited by Helen Tager-Flusberg, Simon Baron-Cohen and Donald J. Cohen, 3-9. Oxford: Oxford UP, 1993.

1. Helen Tager-Flusberg, Simon Baron-Cohen, and Donald J. Cohen, "An Introduction to the Debate," in Understanding Other Minds: Perspectives from Autism , ed. Helen Tager-Flusberg, Simon Baron-Cohen, and Donald J. Cohen (Oxford: Oxford UP, 1993), 3.

2. See Simon Baron-Cohen.   Mindblindness: An Essay on Autism and Theory of Mind.   Cambridge, Mass.: M. I. T. Press, 1995

3. Although Klein labels Dick "schizophrenic," he would be recognized today as autistic.

4. Melanie Klein, "The Importance of Symbol Formation in the Development of Ego," in The Selected Melanie Klein. , ed. Mitchell Juliet (New York: Free Press, 1986), 95-96.

5. Ibid.: 96.

6. Ibid.: 97.

7. Ibid.: 97-98.

8. Bruno Bettelheim. "Joey: A 'Mechanical Boy.'" Scientific American 200: 117.

9. Ibid.

10. Ibid.

11. Ibid.: 118.

12. Bruno Bettelheim. "Strangers to Life," in The Empty Fortress (New York: Free Press/Macmillan, 1967), 126.  

13. Bettelheim, "Joey: A 'Mechanical Boy.'": 126.

14. Ibid.

15. Ibid.: 127.

16. Bettelheim, "Strangers to Life.": 57.

17. Ibid.

18. Ibid.: 65.

19. Ibid.

20. Ibid; Dennis Lynch, "Rhetorics of Proximity: Empathy in Temple Grandin and Cornel West," Rhetoric Society Quarterly 28.1: 10.

21. Bettelheim, "Strangers to Life," 68.

22. Ibid.: 65.

23. Lynch's article offers a quick and useful review of the current conversation in Rhetoric about these issues. Among the critics whose work he cites as critiquing empathy from a "poststructuralist, postcolonial, or postmodern" perspective are Susan Jarrett, Lester Faigley, and Raymie E. McKerrow, along with James Zappen, Lisa Ede, Jim Corder, and Phyllis Lassner (6).

24. Lynch, "Rhetorics of Proximity: Empathy in Temple Grandin and Cornel West," 10.

25. Ibid.: 7.

26. Marguerite Holloway. "When Medicine Meets Literature." Scientific American (May 2005): 38.

27. Rita Charon and Martha Montello. "Memory and Anticipation: The Practice of Narrative Ethics," in Stories Matter: The Role of Narrative in Medical Ethics, ed. Rita Charon and Martha Montello (New York: Routledge, 2002), ix.

28. Ibid.

29. Dennis Lynch, "Rhetorics of Proximity: Empathy in Temple Grandin and Cornel West," Rhetoric Society Quarterly 28.1: 10.  

30. Ibid.: 17.

31. Ibid.: 11.

32. Sacks, "An Anthropologist on Mars," 250.

33. Ibid.: 286-87.

34. Ibid., 294.



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