The hand had made a strange relationship with its shadow, and he fluttered it and spent his hours, contented with the lone company of his shadow. And his worries stopped. He shut away the world and felt secure in the presence of his shadow. If only the world could be a game with the shadow! But the reality was that he was drawing himself away and away into the world of his shadow (Mukhopadhyay 2011:2).
According to Autism South Africa, the national support and advocacy organisation for the condition, Autism Spectrum Disorder is a lifelong, extremely complex condition that appears to result from a genetic predisposition that is triggered by environmental factors. The global statistic of incidents of autism as 1:68 children affected is now accepted by Autism South Africa. It is also globally accepted that boys are four times more likely to have the condition than girls. Those who fall into these very generalised and impersonal statistics are diagnosed by observable behaviours. These behaviours and manifestations must appear before the child is three years old, and they affect individuals differently. At the risk of over- simplifying and understating the vast scope of neurodiversity that currently exists as a result of the condition, autism is marked by difficulties with expressive or spoken communication, deficits in social and emotional reciprocity, deficits in nonverbal communicative behaviours used for social interaction, deficits in developing and maintaining relationships, and
stereotyped or repetitive activities or use of objects. Such deficits typically manifest as
developing spoken language late, presenting with atypical speech patterns, or no development of spoken language at all. In addition to language difficulties, people with autism present with extreme adherence to routines, ritualised patterns and fixed interests and hyper-or hypo- reactivity to sensory input (or have an unusual interest in sensory aspects of the
environment). Such difficulties and differences experienced by people with autism can present as a wide range of varying degrees of difficulties across all developmental areas. The common catch-all term Autism Spectrum Disorders (ASD) speaks of the heterogeneity of the condition.
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Aside from the language and behavioural markers described above, examination of the brain and MRI studies have shown that autism is related to both structural and functional
differences in the brain that result in abnormal biology or chemistry. That said, however, recognition of the condition of autism clearly relies on the notion of deficit or lack in relation to an understood and widely-recognised mean or normal standard of communication,
sociability and range of interests. The term ‘deficit’, used widely in diagnostic and academic literature on autism, implies that there is a mean or norm against which people with the condition are measured. As deviance from a developmental and social norm, the condition is stigmatised by public perceptions of alienation, aloneness and isolation, because of the communication and social difficulties experienced by people with the condition.
As a precursor to the broader questions of the representation of autism that are the focus of this essay, it is necessary to briefly highlight the history of the condition and its construction in discourse. The history of autism as presented in this essay traces back to the 1940s, to the time of Kanner and Asperger and their naming of the condition. For the purposes of this study, I have limited my research to this time period, from the 1940s to the present, and I do not touch on earlier discourses from which autism also arose, or that existed further back in time. The condition of autism came into being when the word was used by psychiatrist Leo Kanner to describe a sub-set of his patients at John Hopkins University in the United States in 1943. Kanner had already established the first child psychiatry clinic at the university, and he also authored the first English textbook of child psychiatry. Just a year later, Viennese physician Hans Asperger used the same term to describe a group of children who presented with specific patterns of behaviour. However, the word ‘autism’ itself was not new. Derived from the Greek word ‘autos’, meaning ‘self,’ it was introduced at the start of the 20th century by Swiss psychiatrist Eugen Bleuler as a defining symptom of schizophrenia.
What this history suggests, is that neither the word ‘autism’ nor the condition that came to be associated with it emerged in a vacuum, independent of other social developments of the time, such as developments in psychology and theories of child development. Hacking contends that there are also precedents in German literature, before Kanner and Asperger used the term ‘autism’ for specific groups of their patients:
[I]in the 1930s there was an American guru named Arnold Gessel, who had a role similar to that of Dr Spock in the 1960s. In such books as The Mental Growth of the Pre-
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School Child: A Psychological Outline of Normal Development from Birth to the Sixth Year, including a System of Developmental Diagnosis (1925), he told parents exactly how their children should develop, the age at which they would be able to tie their shoelaces etc.
Middle-class people knew their Gesell. Thanks to him, you knew when there was something awry with your child’s development (2006:3-7: accessed online).
Bleuler’s book, The Group of Schizophrenias (1950), later helped to spread the word autism, when it was used to denote the self-absorption of some of his patients (Hacking 2006).
Both Kanner and Asperger began their lives in Austria-Hungary. The prevailing modernist climate in Europe at the time created the perfect soil from which the field of child development, and thus the condition of autism, could grow. Revolutions in art, literature, philosophy, and science at the start of the twentieth century also allowed for sudden growth- spurts in fields such as special education, parenting, and psychiatry. These advances created an environment that facilitated a more intensive focus on children and their development (Nadesan, 2008:84). It can be said, therefore, that autism grew out of a context of modernism, alongside an emerging practice of psychology that focused on the individual, and a sense of an alienated self in relation to the ‘other’ that emerged simultaneously in other spheres such as philosophy and literature. This notion of the ‘self’ in relation to the ‘other’ within the field of autism was reflected in Austrian-born psychologist Bruno Bettleheim’s detailed theory of the ‘refrigerator mother’ in his 1967 book The Empty Fortress. The basic premise of this theory is that autism was caused either by maternal neglect or the lack of proper bonding.
This inability to bond resulted in separation and social isolation from the other within the family unit. The symptoms of autism, then, were caused by the child’s trauma at his or her mother’s rejection. This narrative of the ‘refrigerator mother’ and her inability to bond
properly with her child dominated the discourse around autism at the time. This illustrates the important point that, since the naming of the condition, society has tried to provide some form of explanatory framework for the condition. Bettelheim’s famous book defined autism as a condition that should be treated through psychoanalysis of the mother, whose parenting skills were blamed for her child’s interrupted and incomplete emotional development and her inability to bond with others. Texts such as Bettleheim’s were a product of their time, and
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illustrate how autism as a condition emerged out of a specific social and intellectual context.
Majia Holmer Nadesan sums up the link between how the condition of autism and our attitudes towards it are created and interpreted according to the social developments of the time: “The convergence of new ideas about childhood, new systems of surveillance, new expert authorities, and new institutional arrangements – provided the condition of possibility for autism to be identified, named and interpreted” (2008:125). By attending to these
changing contexts, we are able to track a discursive history of the condition of autism by paying close attention to the professional texts that emerged in the period that followed.
In the decades of the 1970s and ’80s, the theory of cognitive behaviourism came to the fore, and the story of autism changed. Behaviourism emerged from the conditioning theories of people such as John B. Watson and Burrhus Frederic Skinner, ideas which were absorbed into existing approaches to treating autism. Conditioning theory operates on the premise that environmental stimuli shape our behaviour. When applied to autism, it came to be believed that autistic behaviours could be either reduced or reinforced, depending on the response of the therapist, teacher, parent or environment. In this approach, no consideration is given to internal mental or emotional states as these are considered too subjective. The
assumption was that if parents, doctors, therapists and teachers worked the children hard enough, and responded correctly and timeously to their behaviour, then the autism, or the behaviours it presented, might be eliminated. Language might even be learned. Behavioural approaches are still used in autism, predominantly in the United States, and also in pockets of South Africa. However, in the United Kingdom and Europe, and increasingly in South
Africa, pure behaviourism as an approach to autism has largely been replaced with a combination approach. In some cases, it has been completely rejected in favour of social- developmental approaches which take the child’s experience into account. Currently, neuroscience, the biochemistry of the brain and the role of genetics serve as the current discourse or ‘lens’ through which autism is viewed, constructed and deconstructed. In this view, the common anxieties, restlessness and other problems with concentration and social behaviour associated with autism are seen to be causally related to brain structure. Medical interventions to control these symptoms are now commonplace, even in children as young as two. Genetic interpretations of autism such as the ones described above are often based on research into twins (Leung, 2012:7). Despite their differences, all of the approaches outlined above – encompassing psychological, behavioural, neurological and genetic explanations – are in agreement that someone or something be made to answer for the condition. Whether it
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be the mother, the doctor, the therapist, the neurobiology or the ‘systems thinker’ father whose career falls into the technical rather than social arena such as engineering or computers, and family genes, society demands that someone own up and be responsible.
In recent years, there has been a considerable rise in interest in, and fascination with, Autism Spectrum Disorder (ASD) from the media and general public. This has led to an increase in depictions of, and narratives centring on, autism in various forms of popular culture. Judging by the plethora of books, films and movies which engage with characters on the autism spectrum since Dustin Hoffman’s performance in the film Rain Man (1988), it seems clear that the public fascination with the condition has never been as strong. As Ching- man Leung asserts, “The public anxiety, speculation and curiosity on autism have aroused a more visible and intensified autistic presence not only in clinical, scientific or academic literature, but also in popular culture including film and literature” (2012:2). According to Thomas G. Crouser, popular culture is saturated with images of disability; in fact, he suggests that disabled people in mainstream culture have in fact been hyperrepresented, even
obsessively, and often as a prompt or a prop for narrative. Ian Hacking concurs with this view: he predicts that despite the absence of definitive knowledge of the condition, “[a]utism will figure this year in dozens, maybe hundreds of cheap novels, thrillers and maybe a good book or two, just as multiple personality did fifteen years ago” (2006:3). Despite their
relatively recent description in the scientific literature, modern Western literature and popular culture are littered with stereotypes of some of the facets of autism and Asperger syndrome (Bates 2010:47). As such, the condition of autism as well as the ideas and images
surrounding it are represented in a variety of ways, whether through professional literature, academia, memoir, autobiography or fiction. These narratives and stories, digested and interpreted by the general public, have been key to that public’s impression and
understanding of the condition.
Autism remains a spectrum disorder, with a wide range of presentations. In the light of this, what popular representations surrounding autism have emerged tend to be rather limited, even to the extent of collaborating with stereotypical public perceptions of the condition. This view of autism, therefore, is limited to its function within the narrative. The majority of fictional books and films with ASD characters at their centre portray these characters as verbal, and located on the high end of the spectrum (what was previously classified as Asperger’s syndrome). Less represented in fiction is what is commonly termed
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‘classic autism’, where communication, social, and sensory difficulties are so severe that they impede ‘normal’ functioning to a profound degree. It is possible that we are presented with only one side of the ASD coin. As Bates suggests, “novels containing characters who show the full triad of primary symptoms of autistic disorder, with impairment of language and socialising and a preference for routine, are relatively rare” (47). Additionally, in these and other popular representational forms, autism remains a disability, an alternate way of being, deviant from an established norm. A further critique of popular autism representation comes from Murray who suggests that autism narratives have primarily been used to tell the stories of the non-disabled (2008:328). Murray’s position is that people with disabilities have been placed in movies, fiction and other forms of narrative as supporting acts, as characters to highlight or support the pain, the growth, or the journeys of the non-disabled. As an alternative to this, and considering the many ways in which a person with ASD might be affected, it is equally possible to imagine the many ways in which autism might be
constructed and portrayed. It may be argued that the depiction of autism in popular culture tends to serve the general public’s fascination with the condition, rather than portraying any real or authentic account of what autism is.
ASD continues to capture the public imagination, and even to feed it. Perhaps this recent hunger for stories concerning people with marked neurological and social difference is rooted in the depths of a human psyche that relies on metaphor. Metaphor has persisted through time and across cultures as a fundamental way in which human beings understand and explain their experiences. Perhaps the condition of autism has come to stand as a larger metaphor for our society. We may, for example, be inspired by popular narratives of the savant with an extraordinary skill in a single area, a narrative which also feeds into the hope that our brains are more capable and contain more potential than we realise. Perhaps, at the same time, narratives of autism at once fascinate and make us afraid when we are faced with the threat of our own loneliness, our sense of existential alienation. Alternatively, perhaps current popular representations of autism find resonance within us because of our own personal struggles between our social selves with our desires for interaction and reassurance on the one hand and our craving for solitude on the other. In these and other ways, the popular narratives around autism that have emerged in the past twenty years have fed not only our collective imaginations, but also our preoccupation with the state of the self. Just as the named condition of autism emerged in the context of modernist ideas of alienation and aloneness, it is equally possible that the condition of post-modernity with its own heightened
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anxieties, stresses, informational overload and data-filled human experiences has contributed to our definition and construction of high-functioning autism and Asperger’s syndrome.
Common perceptions of people on the high end of the spectrum are that they are pattern and numbers proficient and focussed, rather than socially and emotionally driven. They have the ability to retain extraordinary amounts of information about limited and detailed subject matter, and have limited and stereotypical ways of communication. The way our society is now perceived and structured, as well as the growth of special education as a specialist field and the necessity of funding for such education, have likely contributed to the ways in which autism is perceived in the second decade of the twenty-first century. Much of this, I would argue, is related to our heightened anxieties about how we, as individuals and collectively,
‘should be.’
As the foregoing suggests, the question of autism and its representation raises important questions about the epistemological importance of narrative itself. Stuart Murray states that Mitchell and Snyder are correct to say that “Americans learn perspective on disability from books and films more than from policies or personal interactions,” and that this is true of non-American locations as well (2008:4). As Lewis, Rogers and Woolcock (2008) attest, literature can constitute a key form of social evidence and testimony. Autism is a condition lived and experienced by many people. Writing about autism, or writing about characters on the ASD spectrum, allows for an interpretation of the condition, and those who live with it, for a wider reading world. As Woolcock et al suggest, arguing in the contexts of the social sciences, narrative or stories about particular conditions or events can offer as many, if not more, insights than empirical studies. Bates makes a similar point about the role of narrative in the understanding of autism in particular:
Some writers have illuminated aspects of the autistic triad of social impairments, abnormalities of language and need for sameness. Other writers have opened our eyes to the autistic world view in its strangeness and richness. Still more have started to examine prejudice, disability rights and the implications of an international autism
community. As in other areas of mental health, literature can help inform, entertain and question our attitudes and values (2010:47).