 |
|
|
Autism and
Representation |
|
This presentation grows out of a section of an article I wrote on autism and film a few years back (McDonagh 1999). At the time, I was interested in the question of why autism was being used to represent a certain failure of empathy in films, and why it had become, suddenly, a popular metaphorical strategy for presenting a host of questions about interpersonal relationships and identity. The short answer is, of course, that autism is used as a metaphor in this way because it seems believable to an audience. So it "works" - but why? This lead me to explore autism's history, to ask why we have such a category as autism, and also to wonder why did we not have it until the 1940s. (Another question, not considered here: why did autism remain obscure until the 1980s?) I then formed a brief hypothesis about the role of modernism in helping to create the conceptual - or perhaps perceptual - space that allowed Leo Kanner and Hans Asperger to "see" autism for the first time in the 1940s. In this presentation, I try to refine that hypothesis a bit, although it remains in a very raw form. In 1943 Leo Kanner published "Autistic Disturbances of Affective Contact," his groundbreaking article defining a new condition which he called autism. In 1944, unaware of Kanner's work, Hans Asperger published "Autistic Psychopathy in Childhood" ("Die 'Autistichen Psychopathen' im Kindesalter"), describing a very similar condition and also giving it the name autism. Uta Frith notes the "remarkable coincidence" that Kanner, working at the Johns Hopkins University in Baltimore, and Asperger, researching at the University Paediatric Clinic, Vienna, "independently described exactly the same type of disturbed child to whom nobody had paid much attention before and both used the label autistic" ( Autism and Asperger Syndrome , 6). The two did not know of each other or of the other's work, and while the conditions they describe are at some points distinct, Kanner and Asperger have generally been accepted as traveling the same road: "Asperger's Syndrome" is increasingly accepted as a sub-category of autism, accorded a place at the "higher-functioning" end of what Lorna Wing (who introduced Asperger to the English-speaking world) designated the "autistic continuum" (111); it is what we now think of as an "autism spectrum disorder," or ASD. It is truly remarkable that independent researchers should at the same time identify a hitherto unrecognized pathological condition and assign it a diagnostic category with the same name. If people with autistic characteristics had existed previously, as presumably they had, why had it taken so long to recognize them as sharing a particular pathology? What confluence of events and ideas created the conditions which allowed Kanner (1894-1981) and Asperger (1906-1980) to see certain children as belonging to a particular type, when those before them had not? Autism, asserts Frith, does indeed exist in history, pre-1940s. She cites reports of an individual with autistic-like qualities admitted to Bethlem Hospital in 1799, noting that "the boy never engaged in play with other children or became attached to them, but played in an absorbed, isolated way with toy soldiers," and that this case has "often been quoted and never contested, as early evidence of Autism" ( Autism , 16). She argues further that Jean-Marc-Gaspard Itard's famous subject, Victor, the "wild boy of Aveyron," displays features of an autistic child and concludes, with some confidence, that "the evidence . . . allows us to assume that Victor was autistic" ( Autism , 26). In the literary realm, Thelma Grove has argued that Charles Dickens' "Barnaby Rudge," a protagonist of the 1841 novel that bears his name, is the first autistic hero in English literature, evidence of Dickens' fine skills of observation. And, in sifting through the Victorian case books of the National Asylum for Idiots, Earlswood, I came across several descriptions of inmates whose behaviors, if performed before an observer today, would scream "Autism!" However, we must take such historical and literary assessments (even my own) with a healthy dose of salt; as Richard Ellmann has observed, "posthumous diagnosis by biographers [is] as hazardous as diagnosis by doctors when the patient is alive" (11). Early autism sightings, tempting as they are, should lead us to ask why these apparently autistic individuals were not identified in their own time as having a specific condition distinct from "idiocy," which is how they were usually characterized. So I would like to argue that we should consider autism to be more than simply a diagnostic category, and rather explore it as a category initially influenced by a range of factors: the development of psychotherapy, of course, but also the growth of modernism - or modernist aesthetics - and related philosophies such as existentialism, and socio-political factors, including the Second World War. In later years, other elements have clearly come into play as well. Cultural representations, especially the profoundly influential film Rain Man, and more recently Mark Haddon's Curious Incident of the Dog , have been critical to planting autism in the public mind (so to speak). The parent advocacy movement in Europe and North America has had a great deal to say about how autism is to be defined, and the fact that the concept of "autism spectrum disorders" exists can be credited as much to aggressive lobbying as to scientific research. Further, the mapping of the human genome and the ongoing development of neuroscience technologies means that a host of new neurological tests can be performed, opening up an area of research that could conceivably lead to a greater understanding and more effective treatments of autism. But even if they do not, few lucrative areas of research are left unexplored, and advocacy groups have joined with scientists to direct funding towards psycho-neurological research into the aetiology of autism. All of these, then, have influenced how we understand autism today - although, when it comes right down to it, we still have found neither cause nor cure, and in many respects the condition remains a mystery (it also remains a syndrome, the lowest-grade form of medical category - a syndrome being a collection of symptoms thought to represent a particular disease process). Understanding the history of autism is central to understanding not only the current concept but how it is represented in media. So let's start at the beginning - with Eugen Bleuler, who coins the term "autism" in his 1911 work Dementia Praecox. There, he used it to describe "the most severe schizophrenics...[who] live in a world of their own" (63). In a monograph published the following year, The Theory of Schizophrenic Negativism , he notes further that "autistic schizophrenics" have "turned away from reality; they have retired into a dream life, or at least the essential part of their dissociated ego lives in a world of subjective ideas and wishes, so that to them reality can bring only interruptions" (20). However, Bleuler clearly subordinates autism as characteristic of certain types of schizophrenia, and his diagnostic criteria does not match what we now consider to be autism, although there are notable similarities. Indeed, in his 1919 article "The Autistic-Undisciplined Thinking in Medicine and How to Overcome It," Bleuler uses the concept of "autistic thinking" to castigate physicians for indulging in wishful and illogical medical practices. Clearly, his concept of "autistic thinking" varies somewhat from Kanner's and Asperger's, and by 1919 has already become a useful analogy. After Bleuler, we must wait until the 1940s for autism to reappear in the literature. When it does, Bleuler receives only partial credit - Kanner does not refer to him at all, although Asperger does, noting admiringly that "The name 'autism'...is undoubtedly one of the great linguistic and conceptual creations in medical nomenclature" (38). While the seminal articles appeared in 1943 and 1944 respectively, Kanner dates his autism work from 1938, and Asperger claims in his article to have met 200 subjects over the previous decade. (Bruno Bettelheim also notes that he had been working with autistic children in the early 1930s, but only realized this after having read Kanner's paper (8).) Apart from their research areas, there are some biographical similarities between Kanner and Asperger: both were Austrian, although Asperger was born and died in Vienna, and traveled little. Kanner, on the other hand, moved with his family to Berlin in 1906, served in the Austro-Hungarian army in the First World War, and later returned to Berlin for his training as a physician, becoming a specialist in the new field of electrocardiography. While there, he also reveled in the city's cultural vitality, writing poetry and actively participating in Berlin's artistic community (Neumärker 215). He left in 1924, driven by the poor economic situation to the United States, eventually settling at Johns Hopkins University. Of Asperger's biography, less information is readily available, although according to sources he was an introverted child who showed an early precocity in language and would quote the 19 th -century Austrian poet Franz Grillparzer to his elementary school classmates. He was at the University Paediatric Clinic in Vienna from 1932, a year after receiving his doctorate. So there are some similarities - notably the Austrian connection, which, for psychotherapists of the time, would be no small thing. In his 1943 "Co-editor's Introduction" to Nervous Child 2, the journal in which his article appears, Kanner cites a psychotherapeutic heritage of Freud, Jung, Adler, Kretschmer, Meyer and others - although, oddly, not Bleuler. Asperger's conclusion also includes a reference to a professional lineage, including Kretschmer, Jaensch and Jung (the notable absence of Freud can possibly be attributed to the fact that it would be risky to cite a prominent Jewish intellectual while publishing in a German journal in 1944). And certainly the influence of psychoanalytic theories of the mind, identity and relationships are evident throughout the writing of Kanner and Asperger. So let us consider these two seminal articles. In his 1943 paper, Kanner writes of his case subjects that "the outstanding, 'pathognomic,' fundamental disorder is the children's inability to relate themselves in the ordinary way to people and situations from the beginning of life" (242)(italics Kanner). An " extreme autistic aloneness " (242)(italics Kanner again) defines their lives from the start; a "profound aloneness dominates all their behavior," he notes, going on to observe that the children, most of whom were "looked upon as feebleminded," also bear "strikingly intelligent physiognomies" and, when alone, may even assume "an expression of beatitude" (247). They could often speak at an apparently advanced level, usually being "capable of clear articulation and phonation," but language was not used for the purposes of communication but "was deflected in a considerable measure to a self-sufficient, semantically or conversationally valueless or grossly distorted memory exercise" (243). All of the children in his survey come from "highly intelligent parents," Kanner says; perhaps more significantly, out of this group "there are very few really warm-hearted fathers and mothers" (250). The parents, like their children, are also "strongly preoccupied with abstractions" and "limited in genuine interest in people" (250). Kanner concludes that "these children have come into the world with innate inability to form the usual, biologically provided affective contact with people, just as other children come into the world with innate physical or intellectual handicaps....[H]ere we seem to have pure-culture examples of inborn autistic disturbances of affective contact " (250)(more Kanner italics). In this first description of autism we hit several themes that will reverberate in writings over the years. Kanner identifies autism as "inborn," an assertion which to this day remains unconfirmed. He also notes the intelligent but emotionally cold parents - which can be seen as grist for the geneticist argument, but also was developed by Bettelheim into his environmentalist "refrigerator mothers" theory of autism. And, most of all, there is the question of "profound aloneness." (An aside: Anne Alvarez notes that the translation of this concept into the apparently similar concept of "severe social impairment" erases the possibility of asking "questions about the state of the child's internal world of self-object relations" (188-9) - when Kanner's "aloneness" becomes today's "impairment," we are left to assume that nothing happens within.) Let us move on to Asperger's notion of autism. Again, of course, the autistic person is characterized by isolation. "The autist is only himself," he writes, "and not an active member of a greater organism which he is influenced by and which he influences constantly" (38); people with autism are, rather, "intelligent automata" (58). This intelligence has restrictions, however. "Autistic children are able to produce original ideas. Indeed, they can only be original, and mechanical learning is hard for them. They are simply not set to assimilate and learn an adult's knowledge" (70)(italics Asperger). Asperger then identifies autistic language as being especially representative of autistic intelligence. "[Autistic children], and especially the intellectually gifted among them, undoubtedly have a special creative attitude towards language. They are able to express their own original experience in a linguistically original form. This is seen in the choice of unusual words which one would suppose to be totally outside the sphere of these children" (70-71). He concludes that "Behind the originality of language formations stands the originality of experience. Autistic children have the ability to see things and events around them from a new point of view, which often shows surprising maturity. The problems that these children think about are usually far beyond the interests of other children of the same age." (71) Autism here is shaped as a radical interpretation of personal experience, a form of hyper-individuality that cannot be shared. Like Kanner's subjects, Asperger's are physically attractive: "they can be of almost aristocratic appearance," he notes, although adding, "possibly somewhat degenerate" (68). And like Kanner's families, Asperger's parents seem to share in at least some of their children's autistic qualities. In an attempt to identify genetic patterns, Asperger argues that "if it is the father who has transmitted the autistic traits, then he will in most cases have an intellectual profession. If one happens to find a manual worker among them, then it is probably someone who has missed his vocation. In many cases the ancestors of these children have been intellectuals for several generations and have been driven into the professions by their nature...Many of the fathers of our autistic children occupy high positions, despite their notable peculiarities" (84). Another of Asperger's striking observations is his description of autistic children as "egocentric in the extreme. They follow only their own wishes, interests and spontaneous impulses, without considering restrictions or prescriptions imposed from outside" (81). He later writes: "The autistic personality," he writes, "is an extreme variant of male intelligence. . . . Boys . . . tend to have a gift for logical ability, abstraction, precise thinking and formulating, and for independent scientific observation. . . . In the autistic individual abstraction is so highly developed that the relationship to the concrete, to objects and to people has largely been lost, and as a result the instinctual aspects of adaptation are heavily reduced" (84-5). Not surprisingly, then, Asperger's case samples include no autistic girls, but, he writes, "we have seen several mothers of autistic children whose behaviors have decidedly autistic features. It is difficult to explain this observation. It may be only chance that there are no autistic girls among our cases, or it could be that autistic traits in the female become evident only after puberty. We just do not know"(85). Asperger's association of autism with male intelligence is striking, and not only for its notions of what might constitute such a thing. It also articulates a concern with specifically masculine identity, what Peter Middleton describes as the "inward gaze" characteristic of masculine identity in modern culture (9), which had absorbed writers such as D. H. Lawrence, James Joyce and Ezra Pound. I do not plan to investigate modernist writing exhaustively, but rather evoke those canonical names to suggest that autism is more than a contemporary condition (and one with rising incidence levels, according to epidemiologists). It is also a modern, and a modernist, condition. The modernist aesthetic is difficult to pin down in any brief description, but can be summarized so that it is not completely amorphous. Broadly speaking, modernism conceives of the individual as both an isolated and a fragmentary self, a being who must actively create an identity by imposing structure on experience and perception in order to establish a provisional and phenomenological reality. Writers such as Virginia Woolf and James Joyce argued that the modern sub-conscious is articulated though a non-linear consciousness, and individuals are marked by a dynamic idiosyncratic irrational logic. Others, such as Ernest Hemingway, insist upon the alienation of the individual from society and the difficulty, if not impossibility, of communication except through ritual that is consciously imbued with meaning. Of course, the modernist aesthetic is also implicated in existentialist philosophy as it was developed and articulated by writers like Sartre, Gide and Camus. And, indeed, Asperger's description of autistic subjects being "egocentric in the extreme" and "follow[ing] only their own wishes, interests and spontaneous impulses, without considering restrictions or prescriptions imposed from outside" sounds like something that could apply to the protagonist of many a modern existentialist novel. In this aesthetic perceptual framework, it would be possible for Kanner and Asperger to understand their patients in a manner unimagined by their predecessors. Thomas Kuhn has argued that when scientific paradigms shift, researchers develop new ways in which to perceive problems. These scientific paradigms are hardly exempt from broader intellectual and aesthetic movements, and shifts in a dominant aesthetic would also affect scientific observation. By 1940, in the new perceptual framework defined in part by modernism, one could understand the idea of autistic alienation, a "profound aloneness." The children who would have seemed like odd examples of intellectually disabled children fifty years earlier assumed new features for Kanner and Asperger, features their predecessors could not have recognized. Autism appeared as a diagnostic category when its primary features--emotional isolation, the need to establish personal rituals to impose order on the world--appeared as critical components of the modern existential identity. The stars presiding over autism's birth play an important role in how it continues to be represented in popular culture. The manual of psychiatric disorders, the DSM-IV, identifies the "essential features" of autism as "the presence of a markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire or activity and interests" (66); it goes on to note that "in most cases, there is an associated diagnosis of mental retardation, commonly in the moderate range" (67). I'm presenting the DSM definition for two reasons--(1) it is the dominant official description we have for autism, which (2) means that it is quite influential in delineating a coherent image of autism that can then be portrayed in popular culture. Perhaps a definition from the inside is necessary to balance the DSM . Donna Williams, in Nobody Nowhere , describes her condition as an "emotional disability," hypothesizing that "autism results when some sort of mechanism that controls emotion does not function properly, leaving an otherwise relatively normal body and mind unable to express themselves with the depth that they would otherwise be capable of," an "inability to comprehend closeness [which] constrains the formation of attachments and inhibits attempts to make sense of one's environment in infancy. Without this, perhaps the child creates within itself what it perceives as missing and in effect becomes a world within itself to which all else is simply irrelevant, external and redundant. The child . . . does not perceive the absence of emotional attachment until he or she begins to be imposed upon by a world that expects it, along with the desire to learn and to be a part of things, which usually springs from emotional attachment and belonging" (203).
Williams' assessment of autism sounds oddly familiar, reminiscent of contemporary concerns about alienation and the inability to communicate needs and desires which has bequeathed to North American culture a burgeoning self-help industry and a plethora of "chicken-soup-soul" books. The "autistic identity"--and I am searching for common ground between the DSM and Donna Williams here-- is isolated, fragmented, discontinuous, and both critical of and obsessed with itself--the hallmarks, in fact, of much that we call "modern" (and increasingly, "post-modern"). In narratives, the autistic features described by the DSM are often represented as the fundamental incommunicative nature, the intrinsic isolation, of the character with autism (qualities captured nicely by Christopher Gillberg's notion of autism as a "disorder of empathy"). Other traits significant to the diagnosis of autism, such as stereotypical repetitive behavior and the emphasis on consistent and rigid structure, seem to receive less emphasis in popular representations, although they are not absent. Instead, popular images of autism more often draw on other traits that are commonly believed to characterize the condition: for instance, linking it to family dysfunction and ascribing to the autistic individual a "savant" status made manifest through some sort of "special skill." In media, autism imagery often appears in relation to characters negotiating the problems of identity and language, and to the dysfunctional relationship of the individual to his or her community - as in both Rain Man and The Curious Incident , but also in a host of other media (the films Mercury Rising and Under the Piano , for instance). That this should be one of autism's dominant metaphorical uses in popular culture is hardly surprising, and indeed seems inevitable, given that autism may well exist as a diagnostic category because we, as a culture, require a repository for anxieties concerning the destabilized, isolated self articulated by modernism and, later, by post-modernism. Leslie Fiedler argues that "freaks" are expressions of a "secret self," evoking an "aboriginal shudder" in onlookers (17). Fiedler's ideal freak "challenges the conventional boundaries between . . . self and other" (24): if such is the case, could not autism be, in part at any rate, an expression of the secret fear we have of disintegration, alienation and isolation? I suggest that this "autism anxiety" is at the root not only of popular representations of autism, but of the diagnostic category "autism" itself. Autism has become a useful symbol for some aspect of what we think of as human. But in some very real sense, I believe that this symbolic or metaphorical capacity has always been a part of autism - at least in how it has been formed as a concept, a syndrome, and a diagnostic category. Autism works as a metaphor because, as a metaphor, it makes sense to us. And it works as a pathology, as a disorder of empathy, because we understand it as a metaphor. Some post-scripts: An argument that modernism defines autism is tremendously reductive, of course, and modernism represents only factor active at the genesis of autism. I suggest that modernism provides an aesthetic framework through which to view a certain kind of difference and recognize it as being distinct from those "differences" with which it had previously been associated - ie, distinguishing autism from intellectual disability (or mental retardation, or idiocy - depending upon the era). But another factor is not how Kanner and Asperger looked at autism, but where they looked at it. Their subjects were brought to them in a clinic, and they saw these children in psychotherapeutic sessions. They were not in an asylum or institution - had they been, perhaps the autistic inmates would not have stood out; nor would they have been looked for. The fact that autism was discovered in clinics, with parents bringing in their proto-autistic children, rather than in institutions, where many autistic people were sequestered (this is one of the most credible elements in Rain Man ), brings with it another set of considerations. First, why did the parents decide to go to a clinic? The traditional route to the asylum, even in the 1930s, would be from a general physician to an asylum superintendent - not necessarily through a psychotherapist. So somehow these parents eluded that route. This may in part be explained by their social standing - Kanner and Asperger both note that parents are intelligent and professional, although a cross section of autism cases today would show a broader demographic. It seems likely that intelligent and professional parents chose to bring their offspring to clinics rather than asylums, which could explain the early (& persistent) association of autism with intelligence and creativity. It also seems plausible (although difficult to prove) that parents could also be seeing their offspring within a framework in part defined by a modernist aesthetic, and that enables them to see their child as someone distinct from those others with whom the child might be more conventionally classified. I have also ignored such factors as the Second World War, although Alderson and Goodey suggest it may play a part in shaping the way Kanner (a Jewish Austrian in America) and Asperger (himself extremely introverted already, and from the late 1930s intellectually isolated in Vienna) experienced isolation and perceived the world around them. Certainly, for Bruno Bettelheim, his experiences as a Jew in Nazi concentration camps during the Second World War were critical for his formulation of autism. His argument that autistic children are those whose very first experiences of life are profoundly dissatisfying, and who thus choose to dissociation themselves entirely from interpersonal contact, is directly and explicitly paralleled by his discussion of people he had observed in the concentration camps - those who entirely detached themselves from their surroundings, acting without intellectual or personal engagement in an attempt to blunt or deny the horror of their situation. As Bettelheim writes in the first section of The Empty Fortress : "Some victims of the concentration camps had lost their humanity in response to extreme situations. Autistic children withdraw from the world before their humanity every really develops. Could there be any connection, I wondered, between the of the two kinds of inhumanity I had known--one inflicted for political reasons on victims of a social system, the other perhaps a self-chosen state of dehumanization...? At any case, having written a book on dehumanization in the German concentration camps what preoccupied me next was ...infantile autism" (7). A third brief observation: recently I attended a short seminar entitled "A Plain Language Introduction to Autism Spectrum Disorders" presented by a representative of Autrism Community Training British Columbia (ACT BC, as they are more commonly known). While most of the presentation focused on basic information on autism spectrum disorders, one series of slides (because, of course, it was on powerpoint) described "a stress-free child with autism" - a mythical creature (is there a stress-free child?) but an exercise in looking at the positive qualities of autistic people. Among these positive qualities: lives in the present; obeys all rules to the letter; is highly original and creative in his/her thought process; is non-competitive; likes to order and sort objects and facts; and is a willing helper but needs to be specifically asked to help. This list struck me as an interesting revision of many of the diagnostic criteria associated with autism. References Alderson, Priscilla, and Christopher Goodey. "Autism in Special and Inclusive Schools: 'there has to be a point to their being there.'" Disability and Society 14 (1999): 249-61. Alvarez, Anne. Live Company: Psychoanalytic Psychotherapy with Autistic, Borderline, Deprived and Abused Children . London: Routledge, 1992. Asperger, Hans. "'Autistic Psychopathy' in Childhood." (Trans. of "Die 'Autistichen Psychopathen' im Kindesalter." Archiv für Psychiatrie und Nervenkrankheiten 117 (1944): 76-136) Trans. Uta Frith. In Frith, ed., Autism and Asperger Syndrome : 37-92. Bettelheim, Bruno. The Empty Fortress: Infantile Autism and the Birth of the Self . New York: Free Press, 1967. Bleuler, Eugen. Dementia Praecox or The Group of Schizophrenias . (1911) Trans. Joseph Zinkin. New York: International Universities P, 1950. -----. The Theory of Schizophrenic Negativism . Trans. William A. White. New York: Journal of Nervous and Mental Disease, 1912. Ellmann, Richard. Golden Codgers: Biographical Speculations . Oxford: Oxford U P, 1973. Fiedler, Leslie. Freaks: Myths and Images of the Secret Self . New York: Touchstone, 1978. Frith, Uta. Autism: Explaining the Enigma . Cambridge: Balckwell, 1989. -----, ed. Autism and Asperger Syndrome . Cambridge: Cambridge UP, 1991. Gillberg, C. "Autism and autistic-like conditions: subclasses among disorders of empathy." Journal of Child Psychology and Psychiatry 33 (1992): 813-42. Grove, Thelma. "Barnaby Rudge: A Case Study in Autism." Dickensian 83 (1987): 139-48. Hughes, Bill. "The Constitution of Impairment: modernity and the aesthetic of oppression." Disability and Society 14 (1999): 155-72. Kanner, Leo. "Autistic Disturbances of Affective Contact." Nervous Child 2 (1943): 217-250. Kuhn, Thomas. The Structure of Scientific Revolutions . Chicago: Chicago U P, 1970. McDonagh, Patrick. "Autism and the Modern Identity: Autism Anxiety in Popular Discourse." Disability Studies Quarterly 19 (1999): 184-191. Middleton, Peter. The Inward Gaze: Masculinity and subjectivity in modern culture . London: Routledge, 1992. Neumärker, K.-J. "Leo Kanner: his years in Berlin, 1906-1924. The roots of autistic disorder." History of Psychiatry 14 (2003):205-18. Williams, Donna. Nobody Nowhere . New York: Times Books, 1992. Wing, Lorna. "The Relationship between Asperger's syndrome and Kanner's autism." In Frith, ed., Autism and Asperger Syndrome : 93-121.
|
|
|
|
|