The Desire to Recognize the Undesirable:De/Constructing the Autism Epidemic Metaphor and Contagion in Autism as a Discourse
This article focuses on the structural metaphor of autism as epidemic as a potential theoretical framework to critically study discursive practices surrounding the term autism. Metaphors of danger and contagion are widely present in articles and news items on the topic of autism, and people encounter these daily. George Lakoff and Mark Johnson interpret the metaphor as a structure of language, an enactment that consists of grasping one concept in terms of another. In a reading of a small corpus of everyday texts on autism as epidemic, the article argues that this metaphorical concept should be understood as a more comprehensive social and cultural desire to perceive signs of deviance in order to enable urgent human action and, thus, to regain control over normalcy and threatening excess. It offers a theoretical exploration of this desire with a discussion of Anne McGuire's analysis of warning signs on educational posters on autism and C. S. Peirce's notion of the index. A short reading of the film Extremely Loud & Incredibly Close (2011) clarifies the workings of the broader interpretation of epidemic metaphor employed in this essay, and its significance in the critical study of autism, truth, and power.
autism epidemic, crip theory, critical autism studies, discourse, film analysis, Peircean semiotics, performativity, structural metaphor
Autism is a complex phenomenon that is widely spread throughout society, unconfined to the clinically situated discursive agency and positivist gaze of psychiatry (Lester and Paulus 2012). In the fifth edition of the Diagnostic and [End Page 141] Statistical Manual of Mental Disorders, it is officially defined as a spectrum of social, emotional, and sensory impairments (American Psychiatric Association 2013). However, this taxonomic list of symptoms alone is not enough to grasp the full production and circulation of autism as a discourse. In order to more fully consider this issue, research questions must attend to the contingent specificities of autism discourse. Following Foucault, I ask, what can and cannot be said about autism in a given point in time, and where, and by whom (Foucault 1972)? The word "autism" is not neutral but carries a complex medical and social history that was subject to at least two paradigm shifts: a shift to a neurobiological scientific practice, and an acknowledgement of the voices of people who identify as autistic themselves (Waltz 2013). Prior to this, psychoanalytical explanations of autism were dominant, while autistic people were perceived as being unable to voice themselves due to a lack of introspective skills (Sacks 1995). Furthermore, outside of the scientific and clinical realm, the word "autism" is widely colloquially used, often metaphorically or as a throwaway reference to pathology in popular culture (see Murray 2008; Connor 2013).
This essay aims to explore broader themes and theoretical frameworks for the study of these wider discursive practices of autism. In line of Lester and Paulus (2012), it aims to consider how discourse shapes the study object of autism rather than the other way around (260). Of concern is the "textured life of disability" (Titchkosky 2007). This approach is concerned with the way in which the social construct of disability (rather than the presumed biological reality behind impairment) is interwoven into everyday life through omnipresent texts and as such gains form and significance (Titchkosky 2007, 17). I do not only count the written word as text: it also refers to cultural objects from visual and aural media. The goal in studying cultural texts that use autism as a discourse, rather than an alleged (bio)logical reality, is to interrogate power/knowledge. Power/knowledge entails the close interplay between power and discourses of truths: power relations in society rely on the establishment and circulation of discourse, while power also produces such discourse (Gordon 1980, 93). As McGuire and Michalko state on the wish for knowledge on autism, "Knowing autism is gaining power over it" (2011, 163). This power is not confined to visible institutions and a clear authoritarian body: it circulates through society and is imprinted in and actively enacted by people through discourse, and is therefore productive rather than repressive (Foucault 1984, 61–64). It is this productive enactment of discourse that fleshes out the textured life of disability.
The essay counters this enactment on the basis of naturalist positivism, or the assumption that the truth can be retrieved through the scientific study of human subjects. Nadesan argues that common understandings of autism as a pathologized category come from such a positivist paradigm, consisting of detached empirical observations and discoveries of natural truths (2005, 2, 20). When one dismantles positivist assumptions by means of critical readings of representational accounts, one encounters structures of asymmetrical power [End Page 142] relations: that of people who want to know and look for cues that bring them closer to their aim, and of those being studied and looked at. Though naturalized in scientific language, it is important to be sensible to the relative nature of the autism category, as it conceals power relations. The autism diagnosis is an encounter between an assessor and an assessed person, the clinician and the patient/client, and as such, is granted within a structure of scientific, institutional, and economic relations (Kirmayer 2005, 195). The discursive practice of the autism diagnosis in psychiatry—that is, the corpus of the historical and spatial conditions of a given use of language (Foucault 1972, 117)—is also prone to change. Within the boundaries of psychiatry and, more specifically, within the American Psychiatric Association (2013), which has agreed upon the widely employed definition of autism, the word "autism" has been subject to new concepts and new understandings of the pathological (Foucault 1972, 75; Davidson and Orsini 2013). The relationship between the people who decide what autism is and who has autism, on the one hand, and the people identified as autistic, on the other, implies an asymmetrical distribution of the conceived eligibility to employ the word "autism" as an identifier. It is this asymmetry that motivates me to learn more about the vernacular of disability and diagnosis and wider social constructions of identity and diversity. Such a learning process is especially relevant when it comes to a critical consideration of the free-floating nature of words related to autism and of how they are used in everyday life (Connor 2013).
With an exploration of a specific autism metaphor, that of autism as an epidemic, this essay offers one case study regarding the production of asymmetrical power distributions in representational accounts in everyday life. In their critical consideration of autism epidemic rhetoric, Davidson and Orsini (2013, 1) note the link between statistics that show an ever-increasing (estimated) number of autism cases, on the one hand, and cautionary tales about the negative consequences of failed and postponed early action and intervention. Even though such a discursive link helps to stress the urgency of healthcare policy in times of austerity, its fatalistic and cautionary message has caused a backlash from autistic activists and disability groups (5). Building further upon Davidson and Orsini's argument, I will offer further analysis of the use of words like "epidemic" and the like in cultural texts, with a special focus on implicit awareness of the constructivist nature of such a metaphor. I analyse the autism epidemic as a structural metaphor, an interpretation I borrow from George Lakoff and Mark Johnson in their book, Metaphors We Live By (1980). They argue that metaphor can be seen as something more pervasive than merely a linguistic and rhetoric statement that is different from its intended meaning because it evokes resemblance to make a point (3, 212). Instead, a metaphorical concept is structured around conceiving one thing in terms of another, and as such, it structures our thinking and actions and thus creates the social reality we live in (5, 156). For example, one does not only speak of arguments in terms of [End Page 143] war in everyday discourse, but one also "attack[s]" an "opponent" in a debate and "defends" one's own opinions, both in speech and in the act of arguing (4). These conventional ways of structuring concepts emerge from dominant cultural values (22–23) and from the structuring of basal and taken-for-granted orientations toward space and objects in everyday life (56–86). In the case of autism as epidemic, the textured life of autism can be theorized as something that is conceived in terms of an epidemic, or more specifically, an unwanted large-scale spread of pathology in bodies and minds.
Similar to Lakoff and Johnson's examples of war, attacking, and defence in argument, I will dissect examples of everyday uses of notions of dissemination, pathology, and excess in cultural texts from mainstream media. The act of exploring understandings of autism-as-epidemic can ultimately reveal details about the cultural constellation of autism that might otherwise remain obscured (Lakoff and Johnson 1980, 5), particularly as metaphors highlight and hide certain qualities of a target concept (10). Within this study, that concept is autism. I would like to argue that the metaphorical concept of autism as epidemic encompasses something wider than medicalized implications of widely spreading public health crises alone. Rather, the autism-as-epidemic metaphor is concerned with narratives of excess and danger, in which hyperawareness of deviance is being encouraged. Behind the medical and the discursive component of the metaphorical concept of autism as epidemic, there is an underlying sense of desire to capture something that is conceived as undesirable as a pathological thing. This desire concerns a certain power imbalance that I here would like to call recognition. Within the confines of this essay, recognition solely refers to the social expectation of signs of deviance in people, and the anticipation of such signs as discernible in the clinical world and in society as a whole. As I am deconstructing positivism, I am dissecting the relationship between a perceiver who wants to detect something that is preconceived to be a thing of excess, and a person, hypothetical or not, who is believed to carry this thing. These practices of perceiving are further fleshed out with vocabulary from performativity, semiotics, and feminist film criticism. I will further theorize the topic of recognition with a case study from critical theory, Anne McGuire's critical analysis of educational posters on so-called warning signs of autism, and a contemporary cultural representation of autism, the 2011 film Extremely Loud & Incredibly Close.
Overall, my endeavour to name a desire for the undesirable within cultural fears of an inflated medical category called autism aims to crip practices of categorization and the cultural desire to recognize. I borrow this subversive declaration from Robert McRuer, who employs this originally pejorative nomenclature for disabled people in order to lay bare a resistance against the dominant abled norm within activism and critical theory (2006, 33–35). Applying vocabulary from queer theory to dis/ability, McRuer dismantles the naturalization of social norms related to both sexuality and able-bodiedness. He states that both exist [End Page 144] in a system of compulsory able-bodiedness, or the constant social production of a perfect properly productive body (1–2). Inherent to this system is its ultimate impossibility, which implies that the constant striving for able-bodiedness is a farce in itself (10). The trouble of ability is also what makes its hegemony so fragile (31)—and what could enable resistance by claiming the exact category that is thought to be pathological and unwanted, which is crip. While I undermine positivist language and its pathologization of divergence, my essay also subverts epidemic language as implicitly present in previous critical thinking on pathologization. As such, the essay is both a continuation of social constructivist texts on autism and a deconstruction of exactly these texts. When it comes to the autism-as-epidemic metaphor, I perceive similarities between texts with a more clinical reified interpretation of autism, on the one hand, and critical readings of such interpretations, on the other hand. In my overall argument on the pervasive presence of desire for the undesirable in society, I affirm the presence of the autism category as a culturally significant form of identification in contemporary times.
Contagion in Everyday Texts on Autism and Diagnosis
My understanding of the epidemic metaphor as a shared desire to recognize desirable excess will be clarified with a few examples. In their discussion of metaphorical concepts, Lakoff and Johnson list and group English expressions in order to show that metaphors shape everyday literal concepts and language (1980, 46). For example, the metaphor "ideas are plants" comes to the fore when one considers phrases such as ideas coming to fruition and theories that are budding (47). My exploration of talk on contagion related to autism in mainstream media continues these explorations of metaphorical concepts, despite Lakoff and Johnson's sole emphasis on the English language as a frame of reference. In this section, I list cultural texts that use the concept of autism in order to consider how both implicit and explicit language on epidemic shape their message and meaning. In Thinking and Writing Disability Differently, Titchkosky (2007) lists several analyses of texts on disability in order to reveal both the inclusion and the erasure of the embodied existence of disabled people in media accounts. I would like to build upon her statement that "[w]e perform the meaning of our embodied existence by the way we narrate the intersections of human diversity in the midst of which our bodies appear and in the ways that we 'sell' those stories to others" and that "[d]isability, made by culture, is the prime space to reread and rewrite culture's makings" (6; original italics). I will analyze my preliminary overview of sources, mostly from news sites and academic publications, on the basis of overarching themes that I perceive in them. My ultimate strategy here is to look beyond direct references to an autism epidemic and point out implications of contagion, excess, and undesirability that can be grasped through an overarching autism-as-epidemic metaphoric concept. [End Page 145]
A search for autism epidemic on Google reveals a few kinds of contagion narratives that have recently gained wide media attention. One is the rhetoric of antivaccination, which highlights a few of these narratives and their important characteristics. For example, during one of Donald Trump's presidential debates in September 2015, he referred to autism as an epidemic: quoted by the Independent, he stated that the number of overall autism cases has risen since "25 years ago, 35 years ago" and that the rates have gone "totally out of control." He then blames the use of vaccines for the rise, giving an example of a "beautiful child" who fell ill after vaccination and now "is autistic" (Sims 2015). The antivaccine movement is a highly controversial one, as its claims on autism are grounded on former clinician Andrew Wakefield's disproved theories of the MMR vaccine as causing autism (Godlee, Smith, and Marcovitch 2011). In order to get Trump's rhetoric and assumptions on autism clear in a discursive analysis, the most important thing to do is to go beyond questions of logic and universal truths and look at the way in which the defence of the antivaccine argument is phrased.
Recent Dutch media coverage reveals more on antivaccine discourse. A 2016 interview in the Dutch late night talk show Pauw features parents who have chosen not to vaccinate their children. One of them discusses her concern about artificially created pathogenic micro-organisms from laboratories that subsequently get injected into healthy children's bodies. Another mother calls this creation and alleged artificial continuation of disease while serving healthy children crazy (krankzinnig in Dutch), employing a slur related to mental health in order to evoke a pathos of negativity, absurdity, and derangement. Another comment later on brings in the theory that vaccines could cause autism, as another parent suggests a correlation between the number of vaccinations and the number of autism diagnoses among the Amish community.
Both Trump and the parents being interviewed in Pauw talk about a threat that brings autism to pure, yet vulnerable, bodies and minds. Trump talks about a beautiful girl, which could refer to either her appearance or her personality, or both, and the Dutch parents emphasize that pathogens are injected into healthy children. The Dutch word lijfje, little body, evokes tender youthfulness even more as a diminutive noun. This appeal to juvenile purity does not only present children as untouched, but also forms a prelude to an unfortunate fate to come and take that purity away. The fate in question is ultimately autism; the persuasion that vaccines could cause autism, no matter if this is proven or not, lends itself to such deduction. Here, autism penetrates through bodies and spoils them, as it is interlinked to alleged toxins (one Dutch parent refers to "neurotoxins" in vaccines) that are not naturally produced within the body itself. The perceived threat from outside is thought to be fatal yet avoidable through the right action that should be undertaken urgently, before the numbers of autism cases spread even more. [End Page 146]
Such a conceptualization of autism has been interlinked with other metaphors of autism, as described in academic literature on the subject. The notion of autism as a threat from outside that transgresses space toward the boundary of normal was already identified by Alicia Broderick and Ari Ne'eman (2008). Their interpretation of the metaphor is not based on Lakoff and Johnson but instead on Susan Sontag's Illness as Metaphor and previous literature on metaphor in disability discourse. Broderick and Ne'eman identify a common spatial metaphor of autistic people as alien, that is, having arrived from another geographical place (2008, 463–64). They argue that such a metaphor serves to establish a "commonsensical narrative" of autism, its alleged aetiology and origin story (466). Another metaphor, similarly highlighting the invasion of previously incorruptible individuals, was observed by Daniela Caruso (2010). Caruso draws comparisons between the tragedy narrative of autism and the plot of the 1956 science fiction film Invasion of the Body Snatchers, in which aliens take over the bodies of town citizens. While the snatchers are unnoticeable as aliens, they do reject the souls of human beings, leaving behind nothing but an uncanny presence of familiar yet emotionally detached people (2010, 484). Not only do the aliens invade individual bodies, but they also represent a threat to the town as a whole, as more and more people get invaded and, so, disrupt the stable community. Taken together, these metaphors discursively produce autism as an alien threat, which could be seen as a component of the epidemic in the autism-as-epidemic metaphorical concept.
I turn now to address how, with respect to autism, a sense of urgency is routinely held in tension with the apparent need for biosocial intervention, a logic that is also present in Trump's description of uncontrollable ever-increasing autism rates. McGuire (2013) theorizes the concept of urgency in her discussion of the cultural production of autism within a neoliberal conception of fast-paced time, in which early intervention is framed as key to maintaining social order. In the context of the epidemic metaphor, contagion is a process of passing on a pathogen to somebody else: an epidemic does not only affect individual bodily integrity but also a group of people as well. An epidemic is a disease that spreads, that is, multiplies itself in the presence of a collection of bodies. In the case of the antivaccination narrative, this infection takes place outside of fixed communities, in clinical and scientific spaces like laboratories.
My analysis of antivaccination rhetoric has so far revealed broader themes on invasion and the need for intervention that could be shared under a common structure of an epidemic metaphor. It has grasped underlying narratives of threats to individuals and communities, the loss of purity, and the urgency of action to prevent worse. However, I also recognize something less self-evident in both Trump's assertions about autism and the critical parents in the Dutch talk show: a sense of human construction. What frightens the parents is not necessarily disease itself—they frame paediatric illnesses as a natural occurrence—but its artificial reproduction by human agents, and that is where the [End Page 147] fear of intoxication and autism lies. Furthermore, in the case of Trump, it is striking that he mentions that the autism rates used to be much lower twenty-five to thirty-five years ago. Although he probably intends to substantiate his claims on increased cases of autism through human actions, he has chosen to highlight the 1980s. This period coincides with the publications of the first acknowledged autobiographies of autistic people. The realisation that autistic people could voice themselves caused a major shift in assumptions on their capacities (Grandin and Scariano 1996). Indirectly, Trump does recognize human intervention in a concept that he seems to portray as a toxic virus through his antivaccination rhetoric.
These striking references to human intervention are not unique at all; instead, they can be found in many discussions on the steady rise of people identified as autistic, including the ones that challenge Trump's antivaccination rhetoric (Dokoupil 2015). A Google search reveals many critical questions on the validity of declaring a so-called autism epidemic, even more than straightforward and medicalized uses of the epidemic metaphor. Most of the blog posts and online newspaper articles on autism epidemics take increasing autism rates as a point of departure, but they vary regarding how they approach autism itself. Some of them assume a medical reality behind the concept of autism. One blog, discussing a survey of English diagnoses of autism, suggests that autism has always been around at the rate it is now, but that people have gotten "better at diagnosing it" (Timmer 2011). This statement assumes a pre-linguistic reality behind the concept of autism and presents clinical praxis as a progressive movement toward a closer proximity to this reality. The blog thus doubts the epidemic metaphor through a negation of autism as a multiplication of something negative. Other texts mirror talk on epidemic with a greater presence of autism in group communities and society. Liu, King, and Bearman (2010) argue that decreased stigma and a closer proximity to other children with an autism diagnosis could have raised autism rates. Moreover, a Daily Beast article entitled "What If There Is No Autism Epidemic?" (Summers 2015) divides autism spectrum disorder diagnoses data from "the actual number of patients with symptoms of these disorders" that turned out to have remained stable in results of Swedish studies. Without a full rejection of an assumed biomedical reality of autism, the article rather speculates about the expansion of the linguistic and sociocultural reality of autism. This division is used to "poke holes" in the epidemic metaphor (Summers 2015). Overall, doubt about the notion of autism as an epidemic prevails in opinion pieces on some dominant news sites. The critiques of the epidemic metaphor presented here uphold the clinical reality of autism. They nevertheless argue that the socio-linguistic construction surrounding this thing called autism moves either closer or further and further away from reality.
I would like to further discuss this assumption of the clinical reality of autism and the socially constructed nature of the autism diagnosis through [End Page 148] a consideration of Lakoff and Johnson's metaphorical concept. So far, I have outlined the source domain of metaphor, that is, the concept that lies at the basis of the metaphorical utterance (Kövecses 2010, 9): the epidemic. I have outlined cultural texts that employ the word "epidemic" in order to present autism as something contagious that corrupts pure bodies and stable communities, with the aim to defend theories on healthcare and the cause of autism without scientific backing. However, it is important to also understand the target domain here, which is the concept understood as an epidemic: autism. It is the status of this target domain that is in dispute when it comes to critiques of the epidemic metaphor: what exactly is autism here? Writers who voice skepticism about the existence of an epidemic split clinical pathology from its social reality, arguing that it is the latter that has actually expanded.
It is exactly this socio-linguistic reality that counts in the autism-as-epidemic metaphorical concept: the very notion of the epidemic exists through social construction. Critical psychiatrists speak of reification in their commentary on diagnostic praxis, and I believe that this concept is key in understanding both the target domain of autism and the way it is conceived as an epidemic. Nieweg defines reification as a logical fallacy in which an abstract concept is interpreted as a concrete material reality (2005, 687–88). He states that there is a tendency to understand the DSM as such, even though the book was intended as a guideline for clinicians and its taxonomy consists of categories based on agreements about practicability (689, 691–92). In practice, reification ultimately leads to circular reasoning in which the essence of a DSM category slips from a social agreement on criteria shared by patients to an assumed medical reality—which is exactly what is observed in the articles that are critical about the epidemic metaphor. A category such as autism becomes an explanation rather than a description and thus something that is "out there" in "nature," even though it has never been intended that way (692–93). Such a point of departure leads to scientific research that prompts Nieweg to use his metaphor of the rabbit being conjured out of a magician's hat that has been put in that hat beforehand (693).
The notion of reification is of great importance to the metaphorical concept of autism as epidemic. Lakoff and Johnson speak about ontological metaphors in cases of abstract concepts such as emotions and actions that are perceived as material entities (Lakoff and Johnson 1980, 25). For them, our physical and cultural experiential orientation toward things is key to thought processes (6, 10–19), and shared experiences with objects invite us to unconsciously conceive concepts as entities (25–27). This process helps to quantify an abstraction and identify causes (26–27), just like autism is defined as a disorder that several people "have" and as something with a psychoanalytical or (after the paradigm shift) neurobiological cause. If the understanding of autism as an epidemic has its roots in the assumption of a medical thing projected onto a concept based on human invention (Nieweg 2005, 689), one could state that the autism-as-epidemic metaphorical concept is grounded upon another metaphorical concept: [End Page 149] that of autism as a natural medical entity. In the case of reified accounts of autism, such as Trump's reinforcement of the antivaccination narrative, the source domain of the epidemic thus serves to flesh out and sustain beliefs in autism as reified materiality. A narrative of contagion suggests that autism is a thing that one can "catch" like a virus, which adds to the conception of autism as a thing alien to human bodies. The texts that criticized the epidemic metaphor bring back the association with human creation and intervention, primarily through references to the act of diagnosing.
It is easy to conclude here that a deconstruction of reification is a deconstruction of the epidemic metaphor. Philosopher of science Trudy Dehue states that reification is the "locking pen" in a society in which diagnoses rise: its deconstruction involves "pulling away" this pen (Dehue 2013, 12; my translation). However, I believe that the usefulness of such a deconstruction for a detailed study of narratives of contagion could be nuanced when one looks at understandings of reification as present in everyday texts. What is striking in all the cultural texts I have mentioned is a shared concern of rising numbers of autism diagnoses, which remains regardless of an acknowledgement of reification. There is still a cautionary tale of the urgency of grasping and intervening in a growth behind them. That tale could stand for another foundational metaphorical concept, next to the ontological metaphor within reification: one of multiplication. What makes a contagious disease a threat is its uncontrollable spread, the danger that one could catch the disease in proximity to infected people, and the quick increase of sufferers. Studies such as Liu, King, and Bearman (2010) indeed include access to knowledge among citizens as a contributing factor in increasing numbers of diagnoses. Moreover, even though her main argument about the social control of personal (mental) health in neoliberal times mirrors my approach to autism in this essay, Dehue warns against a society in which no one is allowed to be normal again (2013, 33–34).
The notion of multiplication as pollution of the normal becomes clear in a study of Allen Frances's public appearances and interviews. Once the chair of the DSM-IV revision who later left his position at the APA, he now urges people to "save the normal" (Frances 2013). He tells Mother Jones about the "rapid diagnostic inflation" in which "problems of everyday life" become mental disorders. He makes clear that its inflation has not ended yet: "Pretty soon everyone's going to have a mental disorder or two or three." Diagnostic inflation would lead to overmedication that is not needed for many people, while "people who really do need medicine" are inhibited (Mechanic 2013).
Even though I do not want to ignore Frances's critical position, his rhetoric here comes very close to the direct epidemic metaphor use I discussed earlier. He uses alarming language on the spread of diagnoses, which are given so freely that categories such as autism are in danger of losing their significance. Lakoff and Johnson consider the noun "inflation" as an ontological metaphor, conceived as an entity in order to make quantification and a belief in understanding easier [End Page 150] (1980, 26). The implication of monetary value loss calls to mind a notion of the diagnosis as currency or a commodity fetish (Runswick-Cole and Mallett 2012). Bringing the value of diagnosing into dispute through the word "inflation," Frances says that the normal is at stake, and that the great numbers of people who negotiate mental health care obscure the allegedly much smaller group of people who really need it. His statement brings me full circle in my quest for the autism-as-epidemic metaphorical concept, because he seems to use the same appeal to contagion, albeit in a discursive and scientifically constructive sense. The practice of diagnosing as legitimized and regulated by the DSM is toxic, as it invades the boundaries of normalcy and forces medicine into healthy bodies. Moreover, the group of people diagnosed with a mental disorder, including autism, becomes a polluted pool, as Frances implies that not every diagnosis has been given deservedly. Frances suggests quick intervention amid this chaos: he calls for a rejection of the newest version of the DSM. The exact narrative of invasion, contagion, multiplication, human failure, and infection of normalcy is repeated yet again, no matter how much Frances's argument seems to differ from the antivaccination movement. These similarities are key to my understanding of the autism-as-epidemic metaphorical concept: that it is not a literal evocation of concepts related to an epidemic, but that it serves to evoke something much bigger.
Thus, the metaphorical concept of autism as epidemic contains social constructivism in and of itself. Social constructivism as a school of (academic) thought does not only help to counter the public image of autism as a toxic virus; it is a vital part of exactly this epidemic metaphor. My selection of texts was not meant to be representative, but was created in order to evoke the textured life of disability and mental health. The autism epidemic is not a misconception about autism, as the rhetoric highlighted in this section transcends questions about the mimetic qualities of language and instead produces a sense of contagion that is in need of quick action. Both people who warn against the dangers of (reified) autism and people who warn against the dangers of overdiagnosing raise awareness of a danger within society that is spiraling out of control and needs our intervention. This striking parallel prompts consideration of the autism-as-epidemic metaphorical concept as something that overlaps with wider rhetoric and discourse on autism and diagnosing. In the next section, I present a theoretical framework that captures these overarching themes.
Theorizing the Construction of Autism/Epidemic Recognizability
Titchkosky's aim in her study of the textured life of disability is to rethink its complexities and to "reread and rewrite culture's makings" (2005, 6). In this section, I would like to group together the seemingly paradoxical cultural texts that both reify autism and undo reification through further theorization of their over-arching messages of contagion and intervention. I theorize the power relations [End Page 151] that are grounded in these messages. It is here that my notion of recognition, as presented in the introduction, will be further carried out. With a theoretical framework inspired by Foucault and semiotics, I will deconstruct warning tales on diagnoses of autism in order to clarify the link between the language of epidemics and narratives of recognition and control. Overall, I aim to expand a deconstruction of the concept of autism; an overarching metaphorical concept of autism as epidemic is there to implicitly distribute power to a wider public.
The triad of autism, knowledge, and power becomes clear when one thinks of diagnosing as a practice of looking (Sturken and Cartwright 2009). The DSM discusses the characteristics of autism as symptoms that appear to the user (American Psychiatric Association 2013). In his book Discipline and Punish, a study of the manifestation of power and discipline within practices of observance and punishment, Foucault describes the examination as a "mechanism of discipline" consisting of ritualized moments of health inspection in Parisian hospitals in the nineteenth century (1977, 184–189). Foucault describes the notion of the examination as a manifestation of a "normalizing gaze": the pursuit of a constant visibility of individuals, meant to judge them based on their normalcy (184). According to Foucault, visibility "assures the hold of the power that is exercised" (187). The notion of individual clinical cases stems from this power, as it constitutes the subject "as a describable, analyzable object . . . in order to maintain him in his individual features . . . under the gaze of a permanent corpus of knowledge" (190). Indeed, clinical reified notions of autism arise out of a material-discursive practice of declaring the presence of autism diagnosis within the boundaries of the medical world. The reality of autism is a performative one: the word "autism" and the cultural texts that use it actively shape the very notion of autism themselves (Austin 1962). Within the description of several autism-related disorders in the DSM, autism does not exist until another person, the hypothesized reader who brings the manual into practice, detects it. Outside the clinical world, performative utterances that contain the notion of autism are omnipresent. As language on epidemics makes clear, the notion of autism as the target domain of the metaphorical concept adds cogency to declarations of dangers with epidemic proportions in society. As autism as a way of looking consists of constant normalized and naturalized performative acts, the social production of the visible body is a manifestation of a power construct in and outside the clinical world.
McGuire's 2016 book gives insights into the way we could academically study the construction of visibility in everyday cultural texts. She addresses discourse in the production of autism, the positivist field of developmental psychology, and the advocacy for early intervention (McGuire 2016, 67–102). The normalizing gaze is a recurring theme in her book (92): a norm of child development has been naturalized through power relations in intervening disciplining forces that promise teachable improvements (77, 93). McGuire also analyzes cultural texts, coming from autism awareness campaigns, in order to illustrate [End Page 152] the "pervasive" nature of the normalizing gaze of advocacy (81). She discusses posters that depict signs of autism and that incite the audience to actively be aware of such signs and seek help with due speed (81–87). She states that "[t]he poster that lists 'signs' of autism offers the viewer cues that belong to a visual culture where any sign of autism is implicitly narrated as a warning sign" (87; original italics). This makes the link between possibly autistic behavior and seeing red, the color of danger, inescapable.
McGuire's reading of the posters offers a potential template for discursive analyses of the use of the word "autism." The posters appeal to the authority of early intervening professionals and address implied teachable readers who have to internalize their examining and normalizing gaze through the suggestion of danger and urgency (McGuire 2016, 87–88). McGuire thus unearths exactly the same rhetoric of detection and danger that I have found in my understanding of the autism-as-epidemic metaphorical concept. What she adds is an understanding of the way in which we internalize messages like these: we perceive signs, are confronted with cultural texts that steer such a way of looking, and go on to look for more signs. The red flag posters train our perception so that recognition of abnormality can occur more quickly and efficiently. This training is of utmost importance to the autism-as-epidemic metaphorical concept: it both mirrors and establishes exactly the cultural production of contagion that I attempt to grasp in my essay. McGuire's work thus motivates a discursive analysis: it could deconstruct the internalization of normalizing gazes, which forms the glue that holds epidemic rhetoric together.
When it comes to a development of a reproducible method to study this process of internalization, semiotics is helpful. McGuire speaks of signs of autism in her reading of red flag posters. Semiotics is the scientific study of signs, initially founded by Saussure (e.g., Hodge and Kress 1988, 1). It was originally based on the hypothesis that the relation between the signifier and the signified in a sign is arbitrary, but in social semiotics, this view has been problematized in favor of further considerations of social context (8, 21–23). To this, I add a Peircean notion of the "sign" to McGuire's work in order to further explore Foucault's notion of visibility in examination for a comprehensive theoretical understanding of power in practices of looking. The semiotics of C. S. Peirce highlight the process or the act of signification consisting of a sign, an object, and an interpretant instead of a relation of arbitrariness (Hodge and Kress 1988, 20). In his study of "logic as semiotic," that is, the workings of signs (Peirce 1955, 98–99), Peirce identifies the icon, index, and symbol as three different relationships to the sign and the object it refers to (99–101). An icon directly resembles and carries characteristics of the object it refers to (104–105). An index is not related to an object through resemblance, but through an assumed causality that suggests that the sign is directly affected by the presence of the object (107–108). A symbol is only related to the object in terms of cultural conventions (112). I would like to argue that the signs of autism that McGuire refers to but does not [End Page 153] theoretically elaborate on are indexes of autism. Peirce distinguishes the symbol and icon from the index by stating that the latter does not resemble an object but instead acts as a signifier for people based on their previous memories (107) and instinctive associations with these memories. He calls this "associations by contiguity" (108). For example, rising mercury in a thermometer indicates a rising temperature, as the user supposes a natural force that is at play (109). Within the same principle, there are also "probable" indicators (108), as smoke could signal fire but could also come from a cigarette.
I would like to employ Peirce's interpretation of the index in order to further theorize the social expectation of signs in the employability of autism as a discourse. The word "autism" in itself anticipates an occurrence of contiguity. A reified clinical notion of autism assumes a taken-for-granted natural deficit in a person; the DSM contains a list of predetermined behavioral patterns that are intended to be read as indexes of deviance. In McGuire's book, the red flags that are displayed on the autism awareness posters through bullet-point texts and abstracted images of children (2016, 83–84) are all potential indicators of autism. As a discourse, autism is thus grounded in an assumed logic of signification based on contiguity. This means that the texts and the children are indexes of autism meant to teach the viewer to be alert for autism symptoms (the sign) and, indirectly, to expect indexes in case someone is identified as autistic (the object). The very fact that people state that someone displays traits of autism suggests a power relation between a perceiver and a person who is (or should be) perceived. Such power relations are exercised in practices of looking in and outside clinical practices that diagnose and identify deviance as (potentially) belonging into the category of autism. McGuire's case study exemplifies one particular practice of looking and shows how these are educated and, as such, naturalized. Overall, indexicality as signification is an unconscious act that acts as a "transaction" of meaning-making within society as a whole (Hodge and Kress 1988, 20).
Even though Peirce seems to affirm a realist occurrence of natural law with his index, his examples ultimately help me to deconstruct the way in which society anticipates presumed naturalism. In the concept, I find a vocabulary for a theoretical framework that avoids the trap of naturalist reified assumptions about autism and critically interrogates power within looking. Even though indexical signs do evoke logical proof, such as the mercury in a thermometer that expands in high temperatures, Peirce reminds the reader of how indexes work: through contiguity, an index addresses a perceiver and locates them in close connection to the sign and the object. For example, the thermometer not only delivers proof of a high temperature and of the qualities of mercury as a chemical element; such appeals to natural laws direct the attention of the user to weather conditions. In my interpretation and application of Peirce's index, this principle is pivotal, as it helps me to read cultural texts that contain autism as a discourse. Another one of Peirce's examples concerns two people who meet each other, one of them [End Page 154] pointing out that there is a fire in a chimney right in front of them. The other person sees the house with the burning chimney, and then approaches another stranger further onward. When he tells the stranger about the fire, the stranger demands more detailed information about the whereabouts of this house: "He desires some index which shall connect his apprehension with the house meant" (Peirce 1955, 109; original italics). I believe that this desire is also applicable to the workings of autism as a discourse: if it is used in society or a cultural text, further questions on the way in which the condition presents itself are easily anticipated. McGuire's reading of red flag posters shows how this social desire for indexes of deviance works as a comprehensive model to know autism through anticipating signs. As she states, "One thing the poster teaches its viewer is to become visually literate in the understanding that bodies are readable, and thus knowable, by attentive observation to the signs they emit" (McGuire 2016, 93). Here, I would like to add the dimension of desire in Peirce's sense: the wish for smooth connections between one textual index, that of autism as a discourse, and expected verbal and nonverbal expressions of deviance. My exploration of indexicality thus not only undermines the realism of reification, but also creates the opportunity to further delve into imperatives to look for and know autism.
As the power of knowing autism is productive, although we are constantly on the lookout for indexical signs, we enact their object, autistic contagion, ourselves. Approaching specific discursive constructs can further explore this loop. I would like to approach an example of autism as a discourse in popular culture in order to refine my thinking on the social expectation of deviance in practices of looking, and the desire to know autism within it. Film as a medium can feed the desire to perceive clear textual and nontextual indexes of deviance from a safe and easily conceivable distance. I now turn to a short textual and discursive analysis of a case study related to autism: the film Extremely Loud & Incredibly Close. Adapted from the 2005 book by Jonathan Safran Foer, it features a boy named Oskar Schell, who lost his father during the terrorist attack on the World Trade Center. At first sight, it seems to portray a nuanced view on autism, as it does not pretend to show the general public what autism is and what life with the condition is like. However, I would like to argue that the film conforms to the pleasure of looking and speculation among the contemporary general audience that has internalized the autism-as-epidemic metaphorical concept and reproduces it as such.
Extremely Loud's main story arc revolves around Oskar's search for the destination of an enigmatic key in his father's cupboard. When he discovers that the key once belonged to a person called Black, he goes on a quest to visit all Black households in New York City, hoping that this will bring him closer to his father. While on his quest for the destination of his father's key, Oskar briefly refers to the autism spectrum disorder Asperger's Syndrome in a conversation during his first visit to a Black household address. He then indicates that it is not clear whether or not he is autistic: he only suggests that he might have [End Page 155] Asperger's Syndrome but never confirms this or brings up an expert character who talks about autism. Even though this choice seems like a moderate tale of indecisiveness without claims to a true depiction of autism, the invitation to speculate is in itself the way in which autism is presented here to the gaze of the public. This enacted desire to recognize, further theorized with the help of feminist film criticism, is the key to my understanding of the autism-as-epidemic metaphorical concept.
The Diagnostic Gaze and the Desire to Recognize in Extremely Loud & Incredibly Close
In Extremely Loud, indexes suggest a process of signification in which the audience is pressured to look for cues of deviance. At the same time, 9/11 iconography evokes a shared narrative of cultural trauma. The attack on the World Trade Center and the subsequent loss of protagonist Oskar's father set the primary plot in motion: the search for the key lock. Eventually, Oskar never finds a satisfying link between the key and his own father, but does learn more about his family and overcomes obstacles in his negotiation of New York City. The notion of trauma is pivotal here: outside of this cinematic universe, 9/11 is a cultural memory that is annually commemorated in the West, while the trauma experienced by Oskar in the story is personal. The icons of 9/11 discussed in this section are aural and visual motifs that frequently overlap with quotes and more visual motifs that can be interpreted as indexes of autism.
Of particular importance is the relationship between protagonist Oskar and his father, Thomas Schell, who died during the 9/11 attacks. Thomas Schell is seen in flashbacks and is often quoted by Oskar. The emphasis on his death is archetypical to the stories of families who lost a loved one in the attacks, which have been shared on television and in newspapers (Russell 2011). One secondary story arc brings in aural icons of these losses of life to the story world: the recordings of victims who called an emergency telephone number or their families (Mirror.co.uk 2009). Throughout the film, Oskar mysteriously hides an answering machine from his mother. He later reveals in parts that he received phone calls from his father, but did not dare to pick up the phone. Instead, the calls were recorded by the answering machine. Located in one of the Twin Towers, his father abruptly stops his last call at the exact moment the tower collapses. Oskar's guilt about his failure to pick up the phone is revealed to be an important source of trauma and the reason why he keeps it a secret (Codde 2007). The 9/11 imagery in relation to Oskar's father thus presents a narrative of personal trauma, through which the audience gradually learns about its exact nature.
However, alongside trauma, Oskar suggests that he might have an autism spectrum disorder. During his first visit to a woman named Abby Black, he offhandedly remarks, "I got tested once to see if I had Asperger's disease. Dad [End Page 156] said it's for people who are smarter than everybody else but can't run straight. Results weren't definitive." Even though the suggestion of autism is made explicit here, this scene also allows, and indeed invites, further interpretation of other instances in the film when Oskar's challenges are evident. The addition of the spoken line, "I got tested once to see if I had Asperger's disease," justifies the expectation of further autism indexes, as it affirms the viewers' speculation with respect to Oskar's condition. It is in that justification that the desire for indexes for further comprehension, as expounded in my discussion of Peirce's writing in the last section, takes shape in my critical reading of cinema. As the plot unfolds, the film starts to tease its audience before and after the scene with more quotes and visuals that might be read as signs that Oskar has a form of autism. The beginning of the film shows a flashback to Oskar's life right before 9/11, when his father took care of him and facilitated his love of adventure. In an explanatory, didactic tone, Oskar states in a voice-over that he has a "hard time approaching people." His wording is notably similar to the clinically defined symptoms of autism surrounding social communication (American Psychiatric Association 2013). In a subsequent scene showing Oskar peeking at his parents, Thomas discusses his creative inventions of quests for Oskar and the underlying purpose to ease the initiation of contact with strangers. Although Thomas Schell is kept anonymous enough to embody any father who passed away during the attacks on the World Trade Center, it is also implied that he has acted as an autism dad to Oskar regardless of an official clinical diagnosis. To the viewer, the loss of the father could also signify the fear of many parents who worry what would become of their autistic child when they die.
Several visual signs could also be interpreted as either an autism index or a reference to 9/11 trauma. When Oskar travels to the first Black household, he walks through the busy streets of New York City. The experience overwhelms and upsets him. In a voice-over, he states, "I have always had a hard time doing certain things, but the worst day made the list a lot longer." He then continues enumerating details that frighten him, which include running people, airplanes, and "children with no parents." The viewer could acknowledge this moment as sensory overload, which is linked to autism by the characteristic of "hyperreactivity to sensory input" (American Psychiatric Association 2013). Simultaneously, the running, the children, and the airplanes could also be seen as a trauma trigger, as they remind of the attack on the Twin Towers, fleeing citizens on the streets, and newly orphaned children. The first is conceptualized as lifelong (American Psychiatric Association 2013); the second is initiated by the worst day. Shortly afterward, Oskar is shown having periods of panic, tantrums, and self-harm; as these clearly involve distress, the viewer is tempted to link them to both autism and trauma.
The theme of trauma is invoked by citations of the events on September 11, 2001, which I refer to as icons. In essence, voice recordings and photographs are indexes or proofs of the truths of what happened on this day (Gunning 2004). [End Page 157] However, now that 9/11 has become a media event to repeat over and over on television in a ritualized manner, these accounts come closer to icons, because they have become part of our cultural memory and thus signify this collective trauma. For the general public, they thus resemble well-known 9/11 imagery. The field of cultural memory is particularly fruitful here, as this field discusses the performativity of commemoration, that is, the way in which people choose to relate to the past in the present (Plate and Smelik 2012). It thus highlights the cultural enactment of memory, which could be studied next to autism as a discourse. Specific to trauma, the field considers the question of how to cope with wounds from the past (Munteán 2010, 174). Trauma is theorized as a failure to master the signification of harmful experiences and the resulting compulsive reliving of these experiences (Caruth, cited in Munteán 2010, 174). Oskar seems to experience this. Throughout the film, abstracted images of a person falling headfirst down next to straight lines are shown as figments of his imagination during moments of distress and anger. The general look of these images greatly resembles the famous image of a jumper at the disaster area, a photograph known as The Falling Man (171). The inclusion of such a well-known image from news photography stems from Oskar's own incapacity to make sense of his father's death. Oskar often voices his frustration that it "does not make sense." For the viewer in 2011, Thomas's answering machine recordings and portrayal as the Falling Man are especially significant as signs of trauma because of their poignant familiarity. They are part of a carefully structured, annually recurring moments of commemoration, which make 9/11 icons instantly recognizable now. They are consumable as clear signs of distress; the fictional Thomas Schell is as dead as Kevin Cosgrove and the Falling Man, whose stories shock us again and again.
Based on my reading of these consumable signs, interpretable as either signs of trauma or signs of autism, I would like to argue that the index introduces a perceiver/perceived relationship as highlighted by McGuire's discussion of autism red flags, but that the 9/11 iconography only adds more cues to this relationship. Oskar is undiagnosed yet displays many poignant signs: in addition to the social process of learning signs, the wound of 9/11 is confusing for Oskar but all too familiar to the viewer. These divergent roles add to the social process of pathologization, in which the mood and acts of the perceived are displayed to a perceiver who is offered some freedom to speculate about Oskar's condition. The references to 9/11 thus only add more warning signs to be aware of: this layered, enumerative, visualized speculation on inner life breeds a process of hyperawareness and a motivation to see such signs. The cultural production of speculation in Extremely Loud is a satisfaction of the wish for detectable signs of deviance that has been enforced by pervasive discourse of diagnosing, epidemic, and awareness in and outside the clinical world. This is mirrored by the father who did intervene like a good parent but died. Oskar is left with neither a formal diagnosis nor the informal interventions that his father provided prior [End Page 158] to his death. On his quest for a posthumous glimpse of his father, the attentive audience is there as a foster parent until the plot ends.
What becomes clear here is that film functions as an ultimate practice of looking at indexes and signs of psychopathological deviance, regardless of the question if Oskar is autistic. Feminist film criticism has defined the construction of narrative and the pleasure of looking (scopophilia) as key to the workings of film. Based on Freudian psychoanalysis, these critics present desire as the main driving force behind the things that are and are not seen onscreen (De Laurentis 1984, 67). After all, cinema creates a space in which an audience can watch an onscreen world in clear view from a safe distance, which grants a sense of pleasure. In the case of films like Extremely Loud, desire stands for the will to know and identify deviance and notions of abnormality, as well as for the imperative to be ready for intervention. The quotes and visuals discussed here construct a gaze onto Oskar's ambiguous condition (Mulvey, cited in De Laurentis 1984, 66) that shape and steer the way in which the audience views the film. As Extremely Loud satiates the desire to speculate and master deviancy, this gaze stands for power production. This cinematic text is thus part of our textured life of disability, normalizing internalized demands for knowledge of deviance in order to yield and sustain power over perceived pathology.
Extremely Loud is a cultural text produced in a society in which early intervention and hyperawareness of deviance indexes are valued. Outside of the realm of Hollywood, texts that employ the notion of autism are themselves spreading like wildfire, often beyond our control. The theoretical structure of indexes of deviance and the visual pleasure of hyperaware speculation exemplify rituals of attempted control over this spread. The autism-as-epidemic metaphorical concept should be recognized as such as well: a culturally produced comprehension of "autism" (both as a reified medical construct and a man-made diagnostic category) as a contagious threat to normalcy is first and foremost a social and cultural assertion of control in which the undesirable is not expected and allowed to spread. Within this form of control, the conscious act of declaring oneself autistic would stand for a queer/crip desire of the undesirable. It turns against expectations of restrained, pathologized life with an allegedly inflated category, as well as against the status of disability as nonidentity (McRuer 2006, 1). This essay's theoretical thinking and readings of case studies have shown to conceptualize and rethink naturalized notions of disability from scratch.
Conclusion: Critical Reflections on Future Research
The conceptualization of autism through the evocation of an epidemic should not just be seen as a misconception or a belief in the reality of autism as a prelinguistic material reality. It is a reality in and of itself that is produced during cultural encounters with the term "autism." The production occurs along a two-way street, in which assumed understandings of both autism and [End Page 159] epidemic evolve. Lakoff and Johnson's notion of structural metaphors helps to deconstruct signification, as it aids in both broadening our understanding of the source domain, epidemic and contagion, and in excavating the often only implied nature of the target domain, autism. My reading of cultural texts defends a locking pin of a desire to recognize the undesirable as the overarching theme to deconstruct in the way we enact autism, diagnosis, and dis/ability. This desire is manifested through ways of perceiving that assume that autism and disability appear to people, and that such appearances need our urgent consideration in order to prevent further spreading of assumed pathologies. Texts from popular culture that do not present definitive portrayals of autism but instead trigger speculation could only reinforce and strengthen this presumption. With my emphasis on Peirce's notion of the index, I challenge arguments that more or better diagnostic praxis have led to higher autism rates, and that the acknowledgement of social constructivism could deconstruct reified notions of autism as an epidemic. My essay is a cautionary tale to such assumptions, as critics of autism as a clinical category and of the prevalence of diagnoses could subtly reinforce the exact underlying epidemic rhetoric that they are trying to undermine. Overall, I shifted my focus from discursive inflation and the danger of a loss of meaning to the presence of meaning in expectations of autism and disability and the potential to reread and rewrite such structures of signification.
My exploration of autism, knowledge, and power could be continued by further analysis of literature from people identifying as autistic. I defend the crip quality of knowledge development from within autistic communities, operating beyond the control of academia and socially constructivist criticism in general. We need to consider texts presented as personal accounts of autistic people and to acknowledge these voices within the production of meaning of the term "autism." The increased intervention of people who identify as autistic into public discourse could motivate queer/crip interrogations of dis/ability in society. Academic research focused on autism as a discourse should embrace and engage the uncontrollable spread of language and meaning that establishes group identity. Such an orientation would invariably promote further explorations of the opportunities and limitations of neurodiversity, or the narrative of affirmative/desirable difference, rather than pathology as shared among autistic people (Broderick and Ne'eman 2008, 470). [End Page 160]
Hannah Ebben is a PhD student at the Autism Centre at Sheffield Hallam University. She graduated in the field of Cultural Studies at Radboud University in Nijmegen, The Netherlands. Her work is grounded in the burgeoning interdisciplinary fields of disability studies and critical autism studies and is concerned with the power relations behind contemporary uses of autism as a discourse. Her PhD thesis challenges positivist clinical approaches toward the notion of autism through analyses of film, animated documentary, and YouTube. Outside of academia, she has been active in autistic activism.