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Narratives in the autism paradigm: rhetoric, (re)presentation, and (inter)action

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Narratives in the autism paradigm: rhetoric, (re)presentation, and (inter)action

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Content Running head: NARRATIVES IN THE AUTISM PARADIGM 1 Narratives in the Autism Paradigm Rhetoric, (Re)presentation, and (Inter)action Jamaica Brown University of Southern California Dissertation submitted for the degree Doctor of Philosophy in Communication Conferred August 2016 Author Note Jamaica Brown, Annenberg School for Communication and Journalism, University of Southern California This research was made possible by the endless patience of my committee and love and support of my family and friends. Contact: jamaicab@usc.edu. NARRATIVES IN THE AUTISM PARADIGM 2 TABLE OF CONTENTS CHAPTER 1: INTRODUCTION .............................................................................................................. 6 STATISTICS AND SPREAD ........................................................................................................................... 7 OVERVIEW ............................................................................................................................................... 10 Reframing ............................................................................................................................................ 10 WHAT AM I DOING? ................................................................................................................................. 12 Autistic narratives ............................................................................................................................... 13 Authoritative texts ............................................................................................................................... 13 Autism in everyday life ........................................................................................................................ 13 Media .................................................................................................................................................. 13 Advocacy ............................................................................................................................................. 14 RESEARCH—SCOPE, HISTORY AND CONTENT(S) ................................................................................... 16 HISTORY .................................................................................................................................................. 20 Theory of Mind .................................................................................................................................... 28 KEY CONCEPTS ........................................................................................................................................ 30 Modernity ............................................................................................................................................ 30 Matrix .................................................................................................................................................. 31 Identity-first or person-first ................................................................................................................ 32 CHAPTER 2: PARADIGM AND NARRATIVE ................................................................................... 34 PARADIGM ............................................................................................................................................... 34 Discourse (communities), and genre theory ....................................................................................... 36 NARRATIVE TYPES .................................................................................................................................. 39 Disease and/or disorder ...................................................................................................................... 39 Disability ............................................................................................................................................. 39 Difference ............................................................................................................................................ 40 NARRATIVES IN THE AUTISM PARADIGM 3 MECHANICS ............................................................................................................................................. 42 Defect .................................................................................................................................................. 42 Deficits ................................................................................................................................................ 42 Deviance. ............................................................................................................................................ 43 META-NARRATIVES ................................................................................................................................ 44 Debilitation ......................................................................................................................................... 44 Divergence .......................................................................................................................................... 46 INTERACTION IN PARADIGM .................................................................................................................... 49 CHAPTER 3: AUTHORITATIVE TEXTS ............................................................................................ 50 AUTHORITY ITSELF .................................................................................................................................. 52 From institutional expertise to practical decision-making ................................................................. 57 MEDICAL AND SCIENTIFIC RESEARCH .................................................................................................... 63 The federal government defines autism .............................................................................................. 63 Effects and narratives ......................................................................................................................... 64 LAW AND POLICY .................................................................................................................................... 66 Disabilities .......................................................................................................................................... 68 Diseases .............................................................................................................................................. 68 Controversy. ........................................................................................................................................ 69 Identity ................................................................................................................................................ 81 CHAPTER 4: POPULAR CULTURE .................................................................................................... 87 TELEVISION DRAMA ................................................................................................................................ 87 Alphas. ................................................................................................................................................ 90 Gary Bell ........................................................................................................................................................ 94 Criminal Minds ................................................................................................................................. 100 Spencer Reid. ............................................................................................................................................... 106 NARRATIVES IN THE AUTISM PARADIGM 4 AUTISM AS A SUM OF ITS PARTS ........................................................................................................... 110 Psychopathy ...................................................................................................................................... 111 Genius ............................................................................................................................................... 113 Savant ................................................................................................................................................ 116 Coding autism as genius ................................................................................................................... 117 Autism itself ....................................................................................................................................... 121 CHAPTER 5: ACTIVISM AND ADVOCACY .................................................................................... 123 Communication activism in academia .............................................................................................. 124 Actors and outlook ............................................................................................................................ 126 “I AM AUTISM ” ..................................................................................................................................... 132 Film analysis ..................................................................................................................................... 132 Part 1: Autism speaking ............................................................................................................................... 133 Part 2: parents (and caregivers) respond ...................................................................................................... 135 Problematic nature ........................................................................................................................... 137 Reactions ........................................................................................................................................... 138 Removal and backpedaling .......................................................................................................................... 146 THUS SPAKE AUTISM SPEAKS ............................................................................................................... 149 AUTISM PARENTS .................................................................................................................................. 149 (Super) heroes ................................................................................................................................... 150 THE COCKTAIL OF ADVOCACY ............................................................................................................. 157 CHAPTER 6: CONCLUSION ............................................................................................................... 159 DOCUMENTING THE LANDSCAPE .......................................................................................................... 160 Lights (or texts) ................................................................................................................................. 161 Camera (in media) ............................................................................................................................ 161 Action (and activism) ........................................................................................................................ 162 NARRATIVES IN THE AUTISM PARADIGM 5 It ’s a wrap ......................................................................................................................................... 163 ONCE MORE, WITH FEELING ................................................................................................................. 165 REFERENCES ........................................................................................................................................ 171 APPENDIX: “I AM AUTISM ” TRANSCRIPT .................................................................................... 193 NARRATIVES IN THE AUTISM PARADIGM 6 Chapter 1: Introduction Inquiry into a social phenomenon invites an author to decide explicitly the subject position that shapes a study's concerns and interests. In this, I found my vision doubled as I examined the social makeup of autism as an area of health communication. Through the lenses of both my personal and professional selves, I found difficulty in approaching the scene through an entirely detached inquiry. I have not been diagnosed with an autism spectrum disorder, but I do identify as non- neurotypical and as a person with both mental illnesses and learning disabilities. Thus, while one might argue that it is not my fight, in many ways (by virtue of both diagnostic fact and a considerable amount of passing privilege), I find myself invested in the discussion at hand. However, my personal investment is coupled with my involvement in and experience with education and child development. Though they might have less direct impact on my personal life, the possible results of changes to the way autism (and related spectrum disorders) is constructed remains both significant and tangible to me in ways that my own diagnoses (and position relative to the autism spectrum) are not. Positioning myself publicly as a researcher is a bit more straightforward. As a researcher, I strive for transparency, which not only allows for the possibility of constructive discussion and unexpected developments, but also keeps me accountable to my research subjects and audience (King, 1996; Rodgers, 1999). This position is both a strategic one (as it offers opportunity to enrich my work) and an ethical one. I deliberately cede my privilege as an expert observer in order to offer subject-centered research experiences within an emancipatory framework (Kitchin, 2000). NARRATIVES IN THE AUTISM PARADIGM 7 Statistics and Spread Autism was first documented in the middle of the twentieth century. However, it remained virtually invisible for most people until the 1980s, when a convergence of popular representations, academic and medical publications, and the rise of advocacy (complemented, or occasionally opposed, by self-advocacy) brought it into the cultural gestalt. The nature of the phenomenon was still a curiosity then, an obscure condition affecting a few poster children—or in some rare but significant cases, adults, such as Raymond Babbitt, the adult brother of the protagonist in the movie “Rain Man” (Levinson & Johnson, 1988). This single movie can arguably be credited for projecting autism onto mainstream knowledge of the time. The conceptually counterproductive association with savant behavior finds its root in those original depictions, and has yet to fully be disconnected from popular appreciation of the condition, despite being statistically rare in reality. Representations have become increasingly commonplace since, serving to normalize, but also to other autism, frequently betraying the original intent of the depiction, a strikingly recurring factor in the phenomenon: a firmly marked and recognizable collection of traits that yet still eludes proper scientific understanding, let alone coherence in popular representations. Since its original identification, autism has seen many diagnostic clarifications (as well as the occasional obfuscation), leading to bitter debates, militant and pragmatic alike, over its existence, its boundaries, its very essence, among psychiatrists and overseeing entities. Knowledge and understanding of the condition appears inherently incomplete for lack of proper structure. Academic and medical fields alike struggle with this to this day. Disagreement spreads among professionals on matters of diagnosis and response. Nevertheless, the condition appears to be much more prevalent than was originally thought. NARRATIVES IN THE AUTISM PARADIGM 8 Globally, the World Health Organization (WHO) estimates the incidence of autism at one person in 160. Additionally, they acknowledge that “reported prevalence varies substantially across studies” (World Health Organization, 2013). In the United States for instance, the Center for Disease Control (CDC) advances the number of one person in 68 being affected (Center for Disease Control, 2015), based on a study on 11 reporting sites for the year 2010 (Baio, 2014). Just two years prior, the CDC’s 2008 estimate put the number at one in 88, steadily increasing from the first number mentioned for 2000, with one in 150 (Center for Disease Control, 2015). The increase in reported cases is worldwide, undeniable, and apparently ongoing; “Based on epidemiological studies conducted over the past fifty years, the prevalence of ASDs appears to be increasing around the world” (World Health Organization, 2013). The numbers are certainly alarming, to the point of some talking of an “epidemic”, and it is clear that autism has risen as an issue of public concern in many parts of the globe. The increase in autism diagnoses is not in dispute. The degree and causal mechanisms of said increase are less agreed upon. There are three general arguments accounting for rising numbers: absolute prevalence, diagnostic refinement, and social desirability. The first argument is relatively straightforward: the number of autism diagnoses is increasing because the number of cases of autism are increasing. The second, often paired with the first, asserts that the number of autism diagnoses is increasing because autism is being better understood, and thus more accurately identified within the population. The third, on the contrary, alleges that increases in autism diagnoses are due to the function (or “trendiness”) of the autism diagnosis itself, either as a convenient throwaway diagnosis for undesirable or inexplicable behavior(s) or as a label preferable to other possible diagnoses for reasons related to social stigma or access to treatment and resources. This breakdown of the increase has been observed before in literature, with NARRATIVES IN THE AUTISM PARADIGM 9 different weights given to the different arguments (Eyal et al., 2010; World Health Organization, 2013). If only the first factor were in play, calling it an epidemic would be more than justified, but answer is more complex than that. What the statistics do demonstrate is that the diagnosis of autism is increasing. While it would be hasty to conclude that the condition itself is on the rise, so would it be to rule that possibility out. Listing the potential explanations in terms of diagnostic methods, the WHO simply states, “It is not absolutely clear if the above mentioned factors account fully for the recent changes in ASDs prevalence” (World Health Organization, 2013). Indeed, it remains unclear whether autism is becoming more prevalent among the population at all. Discursively speaking, there is little doubt that its prevalence within academia, mass media and popular culture has seen a sharp increase. A search on Google Ngram (2016) reveals a sharp and continuing increase in the frequency of use for the word “autism” since 1990, doubling between 1995 and 2008 (see below). Faced with such a massive increase in visibility, authorities of all kinds, political and medical, academic and associative, play catch up with a condition that leaves most of them unsure of where and how to direct funding, effort, support, or blame. Figure 1: Google Ngram (2016) NARRATIVES IN THE AUTISM PARADIGM 10 Overview This dissertation is a narrative about the stories one tells themselves about the workings of the world. The research is a labor of inquiry, an effort to make sense of a variety of discourses about mind and communication recently put into play. In it, I tackle the issue of (re)presentations of autism (and autistic people) in various media, and the degree to which those (re)presentations cohere, both across and within media. The dissertation does not aim to be an exhaustive overview of autism in media, nor is it a quantitative assessment of the subject; rather, my studies interpret a series of stories, examples of narrative tropes, cues, and behaviors deployed to indicate, define, describe, and (re)present autism. In a sense, they are stories about stories, illustrating autism defined. Dissertation analysis falls within, but significantly extends Walter Fisher’s (1984) concept of human beings as homo narrans (Fisher, 1984), or storytelling creatures. I examine a special variation on stories, what I call “autistic narratives,” subsumed under, but not wholly within, wounded narratives (Frank, 1995). A wounded narrative is one that enables but also binds narrator, audiences, and varied interlocutors, who work to engage one another through communication. The autistic narrative represents stories shaping and shaped both by the illness redefining (and sometimes constructing) self in relation to other—as is the case for wounded narratives—but also, and often more importantly, by conditions of agency where the storyteller is not accorded complete or normal capacity for communication. Reframing Reframing. I came to this project prepared to look at autism as a social process. What are the structures that define the latest truth, media, and everyday life discourses on cures, the newest treatments, the sexiest research? What would it look like to pull all these together? What kind of scientific-legal policy stories did people tell themselves? Did truth discourses vary from, NARRATIVES IN THE AUTISM PARADIGM 11 supplement, or become different stories on TV or in day-to-day life? These sets of questions represent a fairly straightforward setup, with a clear set of goals and easily diagrammed process. As I undertook research and organization, however, I found far more intersections than I had imagined. The “we” of these discourses of truth, media and the everyday that I had so casually thought of, a largely undifferentiated mass of people from Western, Anglophone developed countries with relatively similar backgrounds, was much more fractious and much more complex than I had imagined. Suddenly, it was not only a question of what was happening at any given point, but also of how it happened, who was looking at it, and whether it should have happened in the first place. My carefully constructed snapshots became three-dimensional pop-ups with holographic sides. Rather than individual instances within individual circumstances, autism narratives began to look like and shape themselves as different elements of a greater discussion. The original construction of inquiry was predicated on the assumption that each discourse had a narrative (or narratives) specific to it, which could be explored through a random representative piece. The assumption changed drastically as I found a shared set of narratives that could be invoked in any setting, and my research and reading, perforce, had to reflect that as well. However, as I wrote, I kept finding multiple strong readings for things, trending along certain lines of investment. What had been formulated as many stories with a shared vocabulary became through dissertation work phrases in a larger conversation, with invested entities deploying stories of notice to entertain, inform or correct, in the discourse that represented (the phenomenon of) autism. Initially, it seemed almost like I was asking the wrong questions or maybe asking them of the wrong people. Therefore, everything had to be shuffled around. The sections that had once stood on their own were subsumed into the larger project of a shared, basic language: narratives, NARRATIVES IN THE AUTISM PARADIGM 12 authority, history, and context. Self-contained explorations of single works were expanded to position themselves in the web of rhetoric, narrative, authority, and authorship, bleeding into each other where edges intersected. What emerged is an active, consistent complex of discourse and dismissal, stories told about the stories autistic people tell, and a reading of the re-reading of what autistic people themselves write. Autistic writing is confounding for scientists who have already decided what they understood autism to be, and the only interpretation of an autistic narrative is that it cannot be interpreted. Thus, the narrative needs be dismissed, lest theories already decided on fall apart, such as theories that essentially state that autistic narrative remained impossible, unimportant, or unreliable. Therefore, narrowing in on an understanding of the stories of autism requires a grasp on the (hi)story of autism, and its formation into a multifaceted construct of society, science, law, therapy, (self-)advocacy and lived experiences. What am I doing? The study formulates and explores a web of autistic narratives as similar to, but distinct from, that of wounded narratives, specific to autistic writing and discourse: The legal/scientific/cultural frameworks that shape them, the associative and advocacy background that unite them, the challenges that radicalize them, the prism through which they are read and taken in, and the resulting relevance and impact they are afforded. The work delves into how autism's framing as a cognitive deficit molds what science and media tell about autism, how autism is arguably perceived, and the self-representation of autistic people dealing with limited confidence afforded their own words about their experiences and condition. Hence, this dissertation is about narratives going unheard, unsaid, misunderstood, misdirected, or dismissed. I propose a critical study of the construction of communication and communicators at the NARRATIVES IN THE AUTISM PARADIGM 13 margins of social convention and between the borders of academic disciplines. Autistic narratives Autistic narratives. The first part of the dissertation lays out the theoretical structure within which this analysis takes place. There, I discuss my model for understanding the narrative process, framing, and detailing it as both a tool for analyzing work and an object of analysis in and of itself. Authoritative texts Authoritative texts. The second part of the dissertation addresses texts. Specifically, I study social, technical, and legal texts in which people vest authority with respect to autism. The stories of autism include those told by (social) scientific research, diagnostic understanding, therapeutic intervention, and legal positioning. However, in order to engage the topic well, I first address the concept of authority and communication itself, and the ways stories define what is right, correct, or acceptable in relation to medical issues across different (con)texts related to autism. With that addressed, the dissertation proceeds to examine the texts at hand, covering each topic mentioned above. Autism in everyday life Autism in everyday life. The next section of the dissertation deals with the impact and enactment of different representations of autism in everyday life. It explores the way people invoke, interpret, and act upon the different sources of information and authority they have available, and the consequences of those (inter)actions. These controversies include debate over medical versus social models of disability, charity versus (self-)advocacy strategies, cure versus acceptance, and other issues. These polarities play out fractally, enacted on- and offline, in votes and movements, money and policy, day-to-day life, and (inter)personal relationships. Media Media. From everyday life discussions, I proceed to examine (re)presentations of autism in television. Looking at examples of Autism Spectrum Disorder(s) (ASD(s)) in select television shows offers a glimpse of the way audiences are induced to view the disorder(s). Television NARRATIVES IN THE AUTISM PARADIGM 14 narratives include not only visual representation of people with or responding to the condition, but also the process by which issues became recognized, and consequently constructed, through popular dramas. Television offers examples of behaviors (and reactions to those behaviors) and associates these behaviors with certain traits and categories, and conveys something of a nearly definitional message: this behavior is what this condition looks like. Behaviors highlighted in and cued by characters labeled as (or even just assumed to be) on the spectrum become behaviors related to/exemplifying/indicative of the spectrum itself, amplified by explicit references to the traits/definition(s) of autism itself, when the issue is brought to notice. To illustrate this dynamic, I analyze a set of televisions shows, one of which (Alphas [Penn & Karnow, 2011]) had a character explicitly diagnosed as autistic and another (Criminal Minds [Davis, 2005]) that had only “word of God” diagnoses from the actors and/or writers involved. Gary Bell, a main character in Alphas (Penn & Karnow, 2011), displays clear symptoms of classic autism, and those traits were both marked as and understood to be the cause of much of his abnormal behavior. In contrast, Dr. Spencer Reid in Criminal Minds (Davis, 2005) displays much milder symptoms, and when suspect behavior appears, it is either immediately ascribed to another cause or handwaved away. Despite these differences, significant audience populations (many autistic themselves) perceived Reid to be somewhere on the autism spectrum. This caused me to ask several questions: What makes that the case? What similarities are there between the way(s) diagnosed and undiagnosed characters behave? In what way and to what degree do these behaviors match up with those singled out in the sort of ‘authoritative texts’ analyzed before? What narratives do those portrayals invoke? Advocacy Advocacy. From popular culture, I turn to activism of online media group. This involves using the rhetorical/dramatistic technique of the “Representative Anecdote,” a single story in NARRATIVES IN THE AUTISM PARADIGM 15 which the issues are enacted in miniature, with implications and repercussions that are typical of a whole. This concept originates from Kenneth Burke's work on dramatism: Dramatism suggests a procedure to be followed in the development of a given calculus, or terminology. It involves the search for a "representative anecdote," to be used as a form in conformity with which the vocabulary is constructed. (Burke, 1945) Burke goes on to describe the qualities expected from a representative anecdote: A given calculus must be supple and complex enough to be representative of the subject- matter it is designed to calculate. It must have scope. Yet it must also possess simplicity, in that it is broadly a reduction of the subject-matter. And by selecting drama as our representative, or informative anecdote, we meet these requirements. (Burke, 1945) In this case, the context of the representative anecdote is online discussion. I analyze the actions of a specific entity, the organization Autism Speaks, and its impact on actors with varying levels of connection and investment. The discussions include people in the online autism community, individual members and supporters of Autism Speaks, and those to whom the group’s efforts are targeted. The finite nature of this episode, combined with the broad range of implicated actors, makes this an excellent candidate for a representative anecdote. One should seek to select, as representative anecdote, something sufficiently demarcated in character to make analysis possible, yet sufficiently complex in character to prevent the use of too few terms in one's description (or too few coordinates in one's location, or too few faculties in one's university). (Burke, 1945) I focus on the events surrounding “I am Autism,” a short video regarding the nature and impact of autism presented by Autism Speaks at the “World Focus on Autism” in 2009, which took place during the UN general assembly, and was marketed to first spouses. Many in and NARRATIVES IN THE AUTISM PARADIGM 16 around the autism community took issue with both its content and deployment, and the video was quickly removed. Peter Bell, executive vice president of Autism Speaks, said the video got plenty of positive responses from the autism community: "But we realized it did hurt a certain segment of the population, which is why we removed the video link from our website," (as cited in Wallis, 2009). This was met with pushback (Autism-daddy, 2013) from members and allies of Autism Speaks, who argued that it accurately portrayed the feelings and concerns of parents and other caregivers of autistic people (overwhelmingly children [Stevenson, Harp, & Gernsbacher, 2011]), and that its message was important to spread. The study enacts a hermeneutic inquiry, an interpretation of communicative actions. The structure of the chapters allow for an inquiry into the connections between text, image (and their context, whether documentary/advocacy or entertainment), and their effect in the form of (inter)action at the interpersonal level. Research—Scope, History and Content(s) Until 2013, well after this project was commenced, there was a significant and striking academic poverty around the subject of autism aside from medical and scientific research. Before that time, my review of more than 1,000 books and articles had shown a dearth of (academic) research on the subject of Autism as a phenomenon within media and culture. In my search, only one article, “Asperger Syndrome in Contemporary Fictions” (Pourre, Aubert, Andanson, & Raynaud, 2012), and one major theorist (Murray, 2006, 2008) focused specifically on media representation of ASD(s) in general. Newer texts have been incorporated as best as possible throughout the writing process, and have made the dissertation stronger as a result. Despite a recent surge in published work, however, academic exploration of the subject(s) continues to be woefully inadequate in NARRATIVES IN THE AUTISM PARADIGM 17 comparison to related fields of study, such as stigma, disability, and mental illness in media. These issues have been (and continue to be) discussed and analyzed within the autism community for years, but topics of difference have only recently garnered formal scholarly interest. There are currently seven recognized peer-reviewed journals dedicated to autism: Autism, Autism Research, Education and Training in Autism and Developmental Disabilities, Focus on Autism and Other Developmental Disabilities, Molecular Autism, Research in Autism Spectrum Disorders and the Journal of Autism and Developmental Disorders and though not specific to ASD(s), Disability Studies Quarterly has produced a significant number of important articles on the subject(s) as well. Discussions of related topics, such as representations of disability and mental illness in media, dynamics of online communities, textual authority, stigma, and the history, treatment, and diagnostic evolution of ASD(s) over time, all exist for scholarly audiences. Rarely however have these topics been connected to either autism (with the obvious exception of the last) or each other. Disability studies as a whole had been growing steadily in recent years, connected frequently to feminist work (Hamraie, 2013; Schalk, 2013) and discussions of policy and treatment. A small subset of work, mostly based in Australia, deals with representations of disability in nonfiction media (Ellis, 2009), and it provides a fair deal of insight for projects such as this dissertation, despite differences in focus. Research inquiry into online communities largely has avoided ASD-related groups. A few forays have been made, such as Charlotte Louise Brownlow’s (2007) graduate dissertation “The construction of the autistic individual: Investigations in online discussion groups.” Research on stigma and textual authority possess long, rich histories, but these seem to have missed ASD(s) and related issues almost entirely. Representations of disability and mental illness in media appear to remain much at odds with NARRATIVES IN THE AUTISM PARADIGM 18 each other, even as they intersect functionally. Autism’s liminal nature has left it alien to both, an example often picked up for comparison but otherwise avoided. A few works have begun to bridge that gap, however, and I hope for this to be one. In particular, I have four claims that will be supported: 1. Discourses about and around autism can be interpreted through the model of what I call the “autism paradigm”, which borrows from the concept of Narrative Paradigm (Fisher, 1985). The autism paradigm is comprised of what people (think they) know about autism and autistic people, and offers a series of types, mechanisms and meta-narratives that shape and translate the discourse into a meaning and purpose. In the autism paradigm, a set of narratives crop up over and over again across texts, media representations, as well as everyday discourse, online communities and activism groups. Breaking those narratives down into the components of type, genre and meta-narratives of the autism paradigm offers an insight into goals, intents and messages, often unsaid, that lie within said narratives. 2. Autism is structured and interpreted through texts ranging from social science and medical research to practical legal and technical documents. Some carry particular authority derived from who wrote them (textual authority [Luke, de Castell, & Luke, 1983]), or the context in which they were generated (expert systems [Giddens, 1990]). Examining those authoritative texts from the standpoints of their source, the social context of their origins, and their implications and potential repercussions allows insight into the topoi of autism, both as a condition and as an entity. 3. Parallel to the increased awareness of autism among the public, media representations of autistic characters and the autistic existence have become commonplace. What they say NARRATIVES IN THE AUTISM PARADIGM 19 about autism and autistic people is of interest in understanding how such characters, and real individual affected by the condition, are perceived by the world at large. Those representations are structurally dictated to an extent by the type or genre of the media (e.g. news vs entertainment), the role and prominence of the character (e.g. main, minor, victim or killer), as well as the focus for the representation (e.g. comedy vs drama). Conceptually, media approximates autism through a tangle of representations it is more familiar with, such as that of the genius, savant or psychopath. 4. Advocacy and associative entities offer sites of debate and intervention delineated along lines of engagement and interest. Societal acceptance or improvement, representation and agency, as well as the definition and implications of a lacking or different capacity for communication form issues of potential controversy. Activist groups tackle the issues with varying foci, from cure-oriented medical interventionism to social justice militant work. Studying the message of each of these entities, and their respective reach through funding and public interest offers insight into the future societal makeup and the evolution of debate and discourse. The territory covered by this work addresses and may influence people from all walks of life. Not only are people on the autism spectrum invited into discussion; a broad range of communication activities are called into play. These include caregivers, friends, and relatives. At a broader level, the various audiences invited to join in reflective exchange include those writing and enforcing law and policy, experts funded by research and driven by specific agendas, and groups in similar and/or competing demographics. The study is a communication inquiry that opens up a disciplinary topic, a popular culture genre, and activists engaged with the subject to one another, as well as to a wider public. NARRATIVES IN THE AUTISM PARADIGM 20 Representations of autism among diverse groups might have ripple effects, shaping and being shaped by the cultures in which they become situated. Critical studies of communication can act as correctives to stereotypes, prejudices, and ignorance. Someone acting on information they saw in a television show, for example, might accidentally address someone unhelpfully or negatively, or even hurt or kill someone, because their information was inaccurate. Laws based on different concepts/representations might be at odds with each other or go against the best interest of those they were designed to serve. Starting from a nosological, representational (or arguably, genealogical) standpoint, I examine the origin of the term and its afferent diagnostic through its history (Chapter 2). I follow it with a chapter discussing the narrative and discursive construction of the phenomenon within social science and self-expression by addressing (textual) authority, looking at the many different ways that ASDs have been professionally constructed over time and across institutions (Chapter 3). In the media section, I examine (self- )representations of autism in a broader cultural and media context, examining mainstream television shows in particular, and media constructions in general (Chapter 4). The final content chapter offers an inquiry into the discourse and (inter)actions of people and institutions ‘on the ground,’ exploring the way that various activists behave when confronted with ‘real’ autistic people in agentic positions (Chapter 5). History The term “autism” was first used in English by Leo Kanner in 1943. His article “Autistic Disturbances of Affective Contact” followed the lives of 11 children “whose condition differs … markedly and uniquely from anything reported so far, that each case merits … a detailed consideration of its fascinating peculiarities” (Kanner, 1943, p. 217) Each child was interviewed and observed over a period of several years, and parents were encouraged to send any NARRATIVES IN THE AUTISM PARADIGM 21 observations they made on their own. This seems to have actually begun spontaneously, with the receipt of an unsolicited “thirty-three page typewritten history … filled with much obsessive detail,” (Kanner, 1943, p. 217) before the family had even arrived. Kanner interviewed and observed the parents as well, making note of their affect, education, family history, and so on. From this data, Kanner reached a number of conclusions, the first being that what he had observed formed “a unique ‘syndrome,’ … which seems to be rare enough, yet is probably more frequent than is indicated by the paucity of observed cases” (p. 242) At the heart of the disorder, he argued, lay the fundamental inability to relate themselves to others and their surroundings. Using the term for the first time, he concluded that there existed an extreme autistic aloneness that “whenever possible, disregards, ignores, shuts out anything that comes … from the outside” (Kanner, 1943, p. 242). This autistic aloneness was characterized by a lack of or alteration in certain development milestones, such as responses to body language (“failure to assume at any time an anticipatory posture in response to approaching adults”, p. 242) and speech development (eight of the eleven began to speak at, or significantly after, typical age, while three remained entirely nonverbal). “In none of the eight ‘speaking’ children [had] language over a period of years served to convey meaning to others” (Kanner, 1943, p. 243). Kanner also discussed rote memory, which was excellent, but did not generally contribute to communication or function; responses to stimuli, which were at once both exaggerated (extreme agitation in response to loud noises, touch, etc.) and muted (flat affect, lack of response to positive or neutral stimuli); and adaptability as the children displayed limited/circumscribed interests, repetitive movements, and “an anxiously obsessive desire for the maintenance of sameness” (Kanner, 1943, p. 245). Given the nature of their manifestation and the diagnostic culture of the time, it was NARRATIVES IN THE AUTISM PARADIGM 22 rather unsurprising that most of the children had been considered “feebleminded” at some point or another. Kanner took great care to refute this charge, however, arguing that the children all had exceptional “cognitive potentialities” (p. 247), as evidenced by their appearance, affect (when undisturbed), vocabulary, and memory. In the same vein, Kanner made sure to differentiate it from another common diagnosis: childhood schizophrenia. While the schizophrenic tries to solve his problems by stepping out of a world of which he has been a part and with which he has been in touch, [autistic] children gradually compromise by extending cautious feelers into a world in which they have been total strangers since the beginning. (Kanner, 1943, p. 250) With autism so bounded, Kanner concluded by situating the children (and therefore autistic people in general) in the world at large: We must, then, assume 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 handcaps [sic]. (p. 250) Shortly after Kanner's (1943) essay was published, Hans Asperger published “Die 'Autistischen Psychopathen' im Kindesalter” (Asperger, 1944), translated and annotated by Uta Frith as “'Autistic psychopathy' in childhood” (1991). Although Kanner and Asperger made their discoveries at roughly the same time, (mis)used the term “autism” similarly, and even used much of the same language, their approaches and conclusions were rather different (Asperger, 1944): I have chosen the label autism in an effort to define the basic disorder that generates the abnormal structure of the children… The name derives from the concept of autism in schizophrenia. Autism in this sense refers to a fundamental disturbance of contact that is manifest in an extreme form in schizophrenic patients. (p. 38) NARRATIVES IN THE AUTISM PARADIGM 23 Kanner came at the process from what seemed at first to be a simple, relatively methodical curiosity about his strange group of children. He deployed a structure and presentation emphasizing their parents. Their education, affect, relationships with each other, and interactions with him and their child—all these relationships received scrutiny and were remarked upon, some quite sharply and at length. Although the conclusion was relatively neutral about parents and simply presented the entirety for study, it was clear that he had ascribed at least some level of responsibility to parents—which would later be made evident when he endorsed the ‘refrigerator mother’ theory. Asperger, on the other hand, grounded his study in implications for education and achievement. He went so far as to state in the introduction that his work would “demonstrate the truth of the claim that exceptional human beings must be given exceptional educational treatment, treatment which takes account of their special difficulties” (p. 4). Although he used the term “exceptional,” Asperger by no means avoided or elided the nature or extent of those difficulties, having only sentences before labeled their condition a “fundamental disturbance [in] physical appearance, expressive functions, and … whole behavior,” resulting in “severe and characteristic difficulties of social interaction [which can be] so profound that they overshadow everything else” (p. 34). Asperger might indeed have been the first (semi-)official advocate, who claimed that his work could “show that despite abnormality human beings can fulfil [sic] their social role within the community, especially if they find understanding, love and guidance” (p. 37). Asperger began by explaining the term “autism,” its origins, and his reasons for using it. Coined in the early 1900s, “autism” was part of Swiss psychiatrist Eugen Bleuler's (1912) description of schizophrenia. Asperger noted that Bleuler's description of schizophrenic autism NARRATIVES IN THE AUTISM PARADIGM 24 was similar in design (if not in mechanism) to the way he conceptualized the behavior he observed in his sample. Asperger referred specifically to this passage: The schizophrenic patient loses contact with reality to varying degrees. He ceases to care about the real world. He shows a lack of initiative, aimlessness, neglect of reality, distractedness, but also impulsive and bizarre behavior. Many of his actions, as well as his whole attitude toward life, are insufficiently externally motivated. Both intensity and extent of attention are disordered. There is lack of persistence, but occasionally certain goals are held on to tenaciously. One often finds ‘whimsical obstinacy’, that is, the patient wants something and at the same time the opposite. One finds obsessional acts, automatic acts, automatic commands etc. Schizophrenic patients often live in an imaginary world of wish fulfilment (sic) and ideas of persecution. (as cited in Asperger, 1944) Bleuler, and to a lesser extent Asperger, differentiated between “autism” (often translated in English as “dereism”) and “autistic (dereistic) thinking,” the former being the condition described above and the latter being thought associations driven by affects (Asperger, 1944, p. 38), which occurred in ordinary people as well as their respective patient sets. Autistic thinking was that found in play-pretend and superstition, largely harmless “apart from schizophrenia, where it is at its most bizarre” (Asperger, 1944, p. 4). As this sort of thinking was sub-clinical in his patients, Asperger dismissed it, choosing to focus solely on autism. Asperger's autism diverged from Bleuler's at its origin, arguing that “[while] the schizophrenic patient seems to show progressive loss of contact [with reality], the children [he researched] lack[ed] contact from the start. Autism is the paramount feature in both cases. It totally colors affect, intellect, will and action.” What it did not effect was core personality, at NARRATIVES IN THE AUTISM PARADIGM 25 least not in the disintegrative manner of schizophrenia, meaning that the children were not psychotic, merely showing a “greater or lesser degree of psychopathy” (Asperger, 1944, p. 4). Their personalities were intact, merely muted, and/or distorted in their expression, which explained everything, their difficulties and deficits as well as their special characteristics. These elements, Asperger argued, were not uncommon in children, especially in milder forms. To substantiate this claim, he offered four 'prototypical cases': Fritz V., Harro L., Ernst K., and Helmut L. His case notes for each covered much the same territory as Kanner's, but most were significantly longer and more detailed, including tangents on background, context, diagnostic vagaries, and cross-sample generalizations. Gender clearly played a part in Asperger’s assessment. Although in most cases family members were described equally briefly, flaws and strengths alike, when censure was made, mothers bore the brunt of his approbation: The mother herself was quite similar to [her son, Fritz V.]. This similarity was particularly striking given that she was a woman, since, in general, one would expect a higher degree of intuitive social adaptation in women, more emotion than intellect. In the way she moved and spoke, indeed in her whole demeanor, she seemed strange and rather a loner. … One could not help but think that the mother found it difficult not only with her child, but with the practical matters of life. Even living, as she did, in the upper echelons of society, she always looked unkempt, unwashed almost, and was always badly dressed. (Asperger, 1944, p. 41) Although dealing with similar behaviors, Kanner and Asperger approached the condition very differently. Asperger placed far more stress on conduct issues (that is, social behavior in hierarchical settings or within outside power dynamics, such as child/teacher or child/school), while Kanner emphasized the interpersonal (social behavior between equals or within intimate NARRATIVES IN THE AUTISM PARADIGM 26 dynamics, such as child/peer and child/family). Where parents and children shared similar (or at least mutual) dysfunction, Kanner tended to frame things in terms of cascading consequence (the deviant mother toward her deviant child), Asperger used grouping language (a deviant mother/son pair). Autism, as a concept and diagnostic term, thus finds its roots split between conflicting, but complementary attribution and analysis of the communicative impairment observed within a certain class of children. As Uta Frith posited in her translation notes for Asperger's article, some of this might be clue as much to cultural differences as individual biases or theoretical detail. At the time when the researchers were writing, attitudes in the US were more inwardly oriented, putting things in context of the individual, placing development within the normative/theoretically prevalent nuclear family model. Parents were almost solely responsible for their child's upbringing, conduct, and eventual success. In contrast, much of Europe was working within a more institutionally based framework. A child's condition was measured more by their conformity to and success within the various institutions to which they belonged, such as school, church, and community. Instilling discipline and respect for authority remained a crucial aspect of education and growth (Frith, 1991). However they came about, the originating differences in perspectives had clear impacts on the overall character of the theory of the condition. Take, for instance, the grouping versus consequential language trends. Both Kanner and Asperger observed patterns in parental/familial behavior and both, at times, drew specific conclusions regarding the effects of familiar context and parental behavior on the deviant child and child's deviance. The way those conclusions were conveyed, however, provides a vastly different image of the pathology involved, setting up conditions for significantly different implications in the theory's impact and deployment. Kanner NARRATIVES IN THE AUTISM PARADIGM 27 situates the problem within a familial context, whereas Asperger locates it within the relationship between an individual and society. Placing emphasis (and thus blame) on the parents of autistic children influenced the socio-political development of autism as a field and phenomenon during and after the de-institutionalization push in the US, which is discussed further in this dissertation. In 1964, psychologist Bernard Rimland published the book “Infantile Autism and its implication for a Neural Theory of Behavior”, which was headed, quite controversially, with a forward by Kanner himself. Rimland's argument for a neurobiological origin for autism flew in the face of accepted theory, which held parents largely responsible for the condition through neglect or otherwise improper parenting. Kanner, as originator and propagator of such narratives, was the last person one would expect to change his mind. That showed, among other things, the robustness and appeal of Rimland's model, which, despite the lack of suggestions and avoidance of parent-specific concerns, gained tremendous traction with parents of autistic children. Within a week, Rimland found himself flooded with letters from parents, bearing theories, questions, and reams of data, both narrative and documented (Rimland, Traff, & Himelstein, 1972). At about the same time, he met Dr. Ole Ivar Lovaas, a behavioral psychologist at UCLA, and they found that Lovaas’ experimental treatment method (which has since been reframed under the moniker of “Applied Behavioral Analysis” or ABA, though it originally also included aversives, such as electrical shocks, shouting, or striking) and Rimland's connections to the parent communities came together well, paving the way for the eventual incorporation of parents into the therapeutic process itself. In 1981, Lorna Wing brought forth the idea of a spectrum, decoupling what she called “classical autism” from other impairments with similar traits, such as mental retardation (which she saw as an unnecessarily vast and ill-defined category, much of which was frequently NARRATIVES IN THE AUTISM PARADIGM 28 comorbid with, but distinct from, autism itself) and Asperger's syndrome. Wing (1981) brought this model of thinking into diagnostic reality as the key person on the DSM-III-R (American Psychiatric Association, 1952) team that rewrote the diagnostic criteria for autism. Theory of Mind Theory of Mind. A Theory of Mind is essentially the (assumed) innate ability for someone to infer the existence of a mind in their interlocutors and people they interact with; it is the understanding that states of mind (thoughts, feelings, intentions) affect others and shape their responses and behavior. Historically, it can be traced back to Descartes' (1641) Second Meditation, with ample contributions and influences from contemporary works. While originally a philosophical concept, it has since been expanded into developmental psychology, with more concrete research, finding links to language tasks and other developmental milestones (Miller, 2006). More modern additions make it particularly salient in the specific study of autism. Specifically, 1985 saw an attempt at reframing autism as a condition illustrated (or, for some theories, fully determined) by an incomplete or absent Theory of Mind within subjects (Baron- Cohen, Leslie, & Frith, 1985). Psychologists used a false-belief test, intended to determine whether one can attribute beliefs to others different than one's own (and/or different from the reality of the situation). Specifically in this case, two dolls, each with a basket, were given a marble. One of the dolls is removed, and its marble then moved elsewhere. The children are asked, “Where will she look for the bead?” They showed that autistic children failed 80% of the time, while other children, (including children with Down's syndrome), generally succeeded. They concluded: Our results strongly support the hypothesis that autistic children as a group fail to employ a theory of mind. We wish to explain this failure as an inability to represent mental states. NARRATIVES IN THE AUTISM PARADIGM 29 As a result of this the autistic subjects are unable to impute beliefs to others and are thus at a grave disadvantage when having to predict the behaviour of other people. (Baron- Cohen et al., 1985, p. 37) This claim went largely undisputed, and was expanded on in Baron-Cohen's (1997) “Mindblindness,” a work that goes so far as to say Theory of Mind is “one of the quintessential abilities that makes us human” (p. 10; still pointing out autistic people's difficulties with it). Some have argued that absolute presence or absence of a Theory of Mind is an oversimplification, preferring a notion of Theory of Mind as a progressive system, still without denying evidence of a delayed or lacking acquisition among autistic children (Leslie, 1991). Further experimentation in neuroscience has shown that coping mechanisms might allow autistic children to ‘fake’ the proper response, despite a lack of the expected cognitive involvement—in this case, the test involved imitating facial expressions. The evidence thus suggests that although both groups performed the imitation task as requested, the neural strategies adopted by typically developing children and those with ASD are quite different. Typically developing children can rely upon a right hemisphere—mirroring neural mechanism—interfacing with the limbic system via the insula—whereby the meaning of the imitated (or observed) emotion is directly felt and hence understood. In contrast, this mirroring mechanism is seemingly not engaged in children with ASD, who must then adopt an alternative strategy of increased visual and motor attention whereby the internally felt emotional significance of the imitated facial expression is probably not experienced. (Dapretto et al., 2006) More recently still, Melanie Yergeau has offered a critique—if not necessarily a direct rebuttal—of not just those findings, but the very use and study of Theory of Mind, particularly in NARRATIVES IN THE AUTISM PARADIGM 30 relation with autism. Without opposing the studies themselves, she pointed out the negative practical and theoretical implications of Theory of Mind and its now ubiquitous nature. By defining humanity itself around its ability to acquire a Theory of Mind, and at the same time defining autism as people unable of the same feat, she dissected and illustrated the Otherness (or even inhumanity) it logically implied for autistic people. She discussed the indirect, rhetorical— but also direct, emotional, and physical—violence that such a dialectic framework could impose on autistic people, herself included, in what she called an “autie-ethnographic narrative” (Yergeau, 2013, para. 2). Further analysis and discussion of this text takes place later. Despite Yergeau's protestations, Theory of Mind is still the leading framework used for defining autism. Key Concepts Whether located in problems attributed to individual or to family mental development or operationally defined as a distinguishing factor among those with a limited capacity to attribute mind independently to others, autism as a phenomenon benefits from having light shone on it through the prism of recent concepts of social science such as Anthony Giddens' (1990) take on modernity, or Gil Eyal et al.'s (2010) approach of autism as a matrix. Modernity Modernity. In The Consequences of Modernity (1990) Giddens discusses the transition from traditional forms of society to modern ones, and the reflexive nature of modernity itself. That dynamic is comprised of three related, interconnected mechanisms: the separation of time and space, which “provides means of precise temporal and spacial [sic] zoning,” development of disembedding mechanisms “[that] lift out social activity from localized contexts, reorganising social relations across large time-space distances,” and the reflexive appropriation of knowledge, in which “[t]he production of systematic knowledge about social life becomes integral to system reproduction, rolling social life away from the fixities of tradition” (Giddens, 1990, p. 53). NARRATIVES IN THE AUTISM PARADIGM 31 Matrix Matrix. The evolution of autism in(to) contemporary cultures of technical, social, and public practice offers a model to test Giddens’ observations. Indeed, while autism does appear to be a biological/diagnostic condition, it is also a process of institutional modernization. Gil Eyal (2010) described this as the “Autism Matrix” where autism emerges in its connected, transitional modern forms with the shift from the institutionalized orientations toward mental illness (specifically mental retardation) to community based care and therapy. Eyal asks rhetorically: What if ‘idiocy,’ ‘feeblemindedness,’ ‘mental retardation,’ ‘autism,’ ‘the spectrum’ are all interpretations we superimpose over the longue durée of practices, and the real events take place not with the proliferation of this or that interpretation (such as the autism epidemic), but when a whole institutional matrix of practices gives way to another? (Eyal, 2010, p. 8). Genealogically, the locus of the phenomenon shifts from individual or social explanations to understanding the condition as an outcome of ordering categories within which groups can be diagnosed, categorized, treated, or generally defined. The institutional orientation was a highly traditional one. As recently as 1961, the mentally ill were turned over into the care of an all-encompassing system in which all decisions were made by experts vested with unquestionable (and well-enforced) authority. Like priests in pre-modern times, psychiatrists and mental health authorities served as both authorities on and intermediaries for the mysterious realm from which proper care and treatment sprung. Patients were sorted according to assessments which prioritized the level of impairment over the nature of the condition, and from there treated according to potential for improvement. There was relatively little incentive for progress beyond basic function within the institutional context; institutions were where the mentally ill and impaired were supposed to be, the sites of best care NARRATIVES IN THE AUTISM PARADIGM 32 and proper situation, not the world at large. The asylum model began to change and people who were or would have been institutionalized were instead accorded living space among 'normal' people. So, there arose a need for new models to replace the expert system inherent in the institutional framework. Institutional psychiatrists and psychologists lost their hold on absolute authority, and a matrix of specialists, parents, paraprofessionals and others settled in to fill the vacuum. A matrix in the sense I use it for the study, constitutes a web of activities that organizes identities in terms of bringing to notice characteristic human capacities and limits among named populations. The asylum works from a social organized, structured, expert basis of authority. A matrix constitutes a self-organizing assembly or network of operations that places stakeholders in the position of cooperation and contestation over definitions, causes, qualities, potential, and doing justice to needs in the context of difference. The autism matrix is constituted by a changing confluence of public health activities by science, medicine, legal experts and insurance working with and against personal exchanges, popular narratives, and media narratives. The matrix is stressed because the condition pushes the culturally acceptable, socially recognized, and medically definable boundaries of communication. The dissertation turns to analyze the rhetorical stresses on these narratives. Identity-first or person-first Identity-first or person-first. Throughout this dissertation, references to people on the autism spectrum take multiple forms. “Autistic [person],” “Person with autism,” “Person with ASD(s),” as well as the occasional “Aspie” or even “Autie,” particularly when quoting. None of those terms (or the variations thereof) are accepted as the proper way to express the condition, and ample debate is waged in regards to which term to use, or conversely why that same term might be offensive, inappropriate, or simply wrong. The main point of contention lies in the NARRATIVES IN THE AUTISM PARADIGM 33 binary of identity-first or person-first, whether one is autistic (and a person), or a person (who happens to be on the spectrum). “Person with autism” seems to be the politically correct approach of journalists and other (typically neurotypical) people having to reference it. There is little argument that it is more proper to speak of a person with a disability, and not from a “disabled” as a noun. Similarly, while the disease still exists, it has thankfully been a long time since one last referred to someone as a “leper.” This has been the logic of attempts at inoffensive phrasing in regards to disabilities or other (presumed negative, or at least Other) traits, such as disabilities, or diseases. In defiance of those who would have autism defined as a disability or disease, however, the prevailing opinion among autistics themselves seems to be an identity-first nomenclature. While most people suffering from schizophrenia would be offended to be referred to as “a schizophrenic,” many autistic people insist that their condition, their autism, is as much a part of themselves as their gender or ethnicity. While it is in part in opposition to the cure-based language of organizations such as Autism Speaks, that is certainly not the entirety of the message. Many bloggers have tackled the subject, and their views overlap for the most part. Their arguments are fairly straightforward: Autism is not a negative attribute and should not comply to the same semantic standards as disabilities; Autism is an inherent, and defining, characteristic of the person; Autism is permanent, not something that can be separated from the person. This is reminiscent of arguments made by other groups of people joined together by their differences or disabilities, more so even when it alters communicative ability with the rest of the population. Particularly striking is the example of the deaf community. With their own language, their own community among which communication is much easier than interfacing with the rest NARRATIVES IN THE AUTISM PARADIGM 34 of the world, they have developed into what some claim should be understood more as an ethnicity than a community or interest group, the Deaf-World. The Deaf-World not only has its own language, but also its own culture, values, history, arts, and so on (Lane, 2005). Similarly to autism, the Deaf-World is threatened by cure-first approaches (though the science behind said cures is much more advanced, from cochlear implants to prenatal genetic testing that the community doesn't hesitate to compare to eugenics, a comparison made all the more salient when one remembers that the deaf communities were already directly targeted by the eugenics movement of the late 19th and early 20th centuries), and might offer a (rather worrisome) glimpse of the future for autism communities. Chapter 2: Paradigm and Narrative The realm of autism research is unstable, its borders and dimensions contested, porous, and blurred. The condition itself has yet to be fully defined, let alone adequately theorized or interrogated. A unified and complete definition of the issues associated with the spectrum has yet to be proffered, much less vetted or accepted. Indeed, attempts to posit a truly unifying theme or definition of the sort would be wasted. Any such answer would either be hopelessly jumbled or so vague as to be useless. Rather than aspiring to construct a single vision that did not and could not (yet) exist, the study examines patterns in existing discourse, those commonalities running through the myriad iterations of the story of autism. Those patterns are narratives, ways of organizing and attributing information into (more or less) coherent stories about how things work. Narratives regarding autism appear to script communication problems in various ways. Paradigm In “Narration as a Human Communication Paradigm: The Case of Public Moral Argument”, Walter Fisher (1984) defined a paradigm as “[a] representation designed to NARRATIVES IN THE AUTISM PARADIGM 35 formalize the structure of a component of experience and to direct understanding and inquiry into the nature and functions of that experience—in this instance, the experience of human communication” (p. 2). Autism and autism research exist in a tangle of competing and contradictory stories, a snarl of events, arguments, politics, controversy, and scandal. It is situated firmly (for some value of firm) within the day-to-day happenings of the world, yet the phenomenon is also inextricably entwined with itself in the abstract, its history, its growth, and evolution as a thing unto itself. This complexity, this formless, borderless, endless morass of thought and (inter)action and artifact, is what I call the autism paradigm. Though it may seem strange to use the term “paradigm” to refer to such an unmanageable mess, it suits the case of autism just fine. Capitalized “Autism,” as commonly used, is a paradigm. It is shorthand for the phenomenon at large, a signifier of the whole as defined by the needs of the user. Indeed, it serves that function within this very text, its form and capitalization serving to delineate the nature and boundaries of the phenomenon being invoked: Autism with a capital “A” to denote (id) entity, phenomenon, existence. Un-capitalized “autism” is a modifier, or a general term referencing (but not invoking) the whole of the paradigm, but only in context of the specific discourse in which it is used can one study autism (in whatever way and for whatever value of autism) or be an autistic person (for whatever dimensions of autism one chooses to identify). To be a person with autism, however, in using “with autism” as a secondary qualifier (as further explored in the discussion on “person first” versus “identity first” discourse), serves the opposite purpose—invoking the whole and excluding that with which one is most closely affiliated. This is an important distinction between person-first (a person with autism), defining autism as just an attribute, a marked, but secondary specificity, and identity-first (an NARRATIVES IN THE AUTISM PARADIGM 36 autistic person), whereby autism is a defining aspect of one's being and identity. Another aspect of the paradigm is invoked by the use of the term Autism Spectrum Disorder (ASD). Autism-as-condition (or illness or disorder) is formally known as ASD, the latest iteration of the term as dictated by the American Psychiatric Association (APA) and accepted by the US government on Dec. 19, 2006 under PL 109-416 (Combating Autism Act, 2006). In common use, ASD refers to the entirety of the medico-empirical work and perspective; to use ASD in a sentence is to specify the physical (neurological, biological, genetic), symptomatic (developmental, behavioral), and occasionally diagnostic aspects of Autism. Just as the simple act of capitalization refocuses the understanding of the paradigm, so too does the addition of a letter. As mentioned earlier, I use ASD(s) to highlight the fact that despite formal, authoritative consolidation, there exist a number of discrete (if not necessarily distinct) positions on the spectrum, with contexts and experiences that are clustered in such a way as to merit their own designation and/or study. This formulation provides a claim to coherence and depth to the paradigm it might otherwise lack; from this perspective, one could lift out, isolate, and examine the experiences of different groups, and the context, history, and practices defining them. Discourse (communities), and genre theory Discourse (communities), and genre theory. This model, these paradigms and narratives, play well with some times, and at others, off against adjacent communicative/rhetorical models. Theories that would position the phenomenon in terms of discourse communities, for instance, might be applied to more strictly order aspects of context going in, or to sort the resultant stories in application and audience. Genre theory can be applied to analyze discourse and authorship, refining both construction and analysis in many aspect of the model with regard to autism-as-condition. NARRATIVES IN THE AUTISM PARADIGM 37 Discourse communities and genre theory are cousins that should make appearances in the sorting efforts of my work—bolstering, complicating, and challenging the nature of the paradigm as it unfolds under the stress of analysis and discussion. The theories are under scrutiny as much as any other tools in the model building toolkit. For instance, discourse communities represent a school of thought made to challenge theories of singularity of thought and cognitive (dys)function in (student) writing, knowing, and knowledge-making: arguments acknowledging the complex social and communicative context of writers—and thus writing and knowledge- broadened (and complicated) discursive and analytical analysis, doing for rhetoric what standpoint theory did for sociology. However, the benefits of the model end there; writers and writing are left passive constructed by their membership in each circle, simplified into place by theory, flat and static no matter how many circles one stacks or arrows are added (Yergeau, 2010). Genre theory draws on and moves past that flat, passive construction, losing the appeal of simplicity and easy visualization; rather, trading heuristic force for a theory in which members of discourse communities are agents rather than products. Genre theory retains the opportunity for flexibility, connecting (human) agency and social context in its very structure. Yergeau (2010) critiques the “typical autism essay,” as an invitational form: [The] typical autism essay is its own genre (a text, broadly defined, that conforms to certain “acceptable” features and styles and commonplaces and discourses and that represents and enacts social action of real human users) (Bawarshi et al.). It has its own discourse (a subset of genre, an “identity kit,” a way of knowing the world and/or a culture by means of language, broadly defined). And it has its own author(s) (real people who govern discourses and genres). (para. 2) NARRATIVES IN THE AUTISM PARADIGM 38 Of course, this level of broadness and flexibility brings with it its own difficulties; as the context changes, so too do the genres. Beautifully specific, intricate, and accurate, but ephemeral and fleeting, one cannot pin down (that kind of boundary defining) genre, thus one cannot (meaningfully) analyze it for long, as such stories will have moved on with the contextual tide, leaving empty, inaccurate work behind. A genre cannot be left to stand on its own. Therefore, this is where narrative dwells, in the space between context and genre, ways to continue to sort stories, no matter the shifts in context and perspective. One need not analyze all autism stories and their respective themes over all times, however. Universalism betrays the very particularities of encounters. To narrow things down, I focus in this study on the dynamics of power and privilege and perspective. One need only follow the lines constructing one's object of analysis to begin with. That is: [We] need to focus only on the ways in which genres and discourse conventions are themselves institutionalized or normalized constructs. … Rather than merely serving as textual categories, genres [can] help us define and organize kinds of social actions, social actions that these texts … rhetorically make possible … Typical autism essays [for example] are entrenched in — are rhetorical byproducts of — typical autism advocacy, activism, and action. (Yergeau, 2010, para. 2) The sections chosen for analysis—law, diagnosis, research, (social) science, media, (inter)personal (inter)action—are genres, contain genres, and analyze genres. The narratives use genre-theoretical discourse in addition to overall context (including genre-theoretical authors) as material to create stories, which can be analyzed as genres, sorted into discourse communities, or fed back into another narrative to create another story entirely. These tools—genre theory and discourse communities—are flawed (as are all tools, when turned to thing they were not NARRATIVES IN THE AUTISM PARADIGM 39 designed for), but they are by no means irrelevant. They will be employed where they fit (and ignored where they do not), and hopefully provide greater depth and insight to the paradigm. Narratives of types and narrative of mechanics connect and disconnect definitions, attributions of recognition, importance of interventions into the discovery of causes, offsets, diagnosis, treatment, adjustment and accommodation. Narrative Types The attribution of causation (origin) largely determines where the burden lies and boundaries of intervention and exchange are put into play; the extent to which a person can be said to have had no choice and/or recourse generally correlates to the degree to which they are allowed to need help (Rushford-Spence, 2014). The following rhetorical toolkit specifies the common identifiers and descriptive qualifiers representing how a condition such as autism can be illustrated, along with their connotations and implications for the resulting discourse. Disease and/or disorder Disease and/or disorder. These stories find a condition that has biological causes and can be treated, cured, or contained. Origins are paramount, as they hold the key to fixing, eliminating and/or preempting the symptoms. The burden of responsibility is on caretakers, researchers, and the government. This carries an inherently negative connotation. Autism needs to be cured with an emphasis on pathology. Research focus is put on cures and (preventative) treatment. Legislation is pushed forward, and the approach is to throw money at it (to make it go away). This framing is caregiver-centric, and the binaries of charity versus advocacy, and pity versus sympathy/empathy lean toward the former (Eyal, 2010, p. 128). Disability Disability. As a disability, autism may be framed as an inherent or imposed feature of the life of a population. Disabilities can be overcome, accommodated, or treated. This again carries a slant toward charity and pity, but the focus for funding supports accommodation, with less or no NARRATIVES IN THE AUTISM PARADIGM 40 focus on cure or treatment. The condition is generally considered permanent. Technological and legal advancement may be encouraged, but a genetic or parental approach is eschewed in favor of societal accommodations, constructs, and/or institutions (Eyal et al., 2010). Difference Difference. Difference, like deviance is defined by its relationship to whatever is constructed as normal. Where deviance is hierarchical, however, difference is a directly relational measure. There can be (and often are) multiple relative levels of deviance—some behaviors/traits may be considered more or less deviant, depending on the context. For each level of deviance, the perceived distance increases between the norm and the trait or behavior in question, and so does the attached stigma. Difference (in theory, if not always in practice) maintains the concept of normal and distance (in many of the cases being evaluated, that is), but removes the stigma attached to the distance. However, like deviance, using a narrative of difference to construct, define, or explain autism does not make for a strong argument for funds or assistance. Hence, as a variation on the human condition, those with autism need to do what everyone else does, suck it up and deal. If an autistic trait or behavior causes a problem, it is up to them to change or compensate for it like anyone else would any other traits or behaviors. Ordinary difference does, however, lend itself to some positive benefits. Integration, for instance, is a goal clearly in reach if there are no categorical reasons to keep people in specific programs or groups. Likewise, equality of opportunity demands that anyone capable of acting a certain way or attaining a certain goal can (and should) be allowed to join, participate, or compete in the same things as any (every) one else is capable of those same things. What might be called "mainstreaming" in a school context is simple integration in social, cultural, legal, and employment contexts. NARRATIVES IN THE AUTISM PARADIGM 41 Constructing autism as difference also helps speed along (the possibility of) reduction (or changes) in social stigma, with ASD(s) and autistic people alike. A close social parallel might be found in the context of the de-pathologization of homosexuality in the 1970s. Social pressure brought the issue up in scientific discourse in the field of psychology. In turn, pressures generated changes in the categorization of homosexuality from disease to difference, opening a number of legal doorways and providing a much needed bolster to the turning tide of public opinion. Attribution of autism to difference may happen in this (mostly) social neutral, (theoretically) apolitical manner, or they may be mobilized along specific social and/ or ideological lines, such as those for, from, and against the neurodiverse models frequently deployed by (self-) advocates and activists such as the Autistic Self-Advocacy Network (ASAN). While neurodiversity is a rather straightforward concept, conceivably open to (almost) any perspective(s), its use has (for historical, ideological, and territorial concerns) become identified with certain social groups, positions, and accompanying arguments. Difference, in the (socio- cultural) context of autism is a more volatile concept than it seems on the surface. The stories of difference identify a phenomenon that is internal/inherent and can be overcome or accommodated. Condition origins are largely irrelevant; the symptoms are the differences and vice versa. Responsibility lies largely with the person designated by the story as exhibiting sets of symptoms. Focus is put on neurodiversity, Individualized Education Programs, genetic research on inheritability, savant status, Asperger's. It calls for increasing the range/detail of the spectrum. People framing autism this way may be willing to fund anything, but prenatal genetic screening (Eyal, 2010, p. 113). NARRATIVES IN THE AUTISM PARADIGM 42 Mechanics Attached to these defining narratives of type, there exist narratives of mechanics, approaching the problem at hand from an ontological standpoint, narrowing down on its essence, and what that means vis-à-vis (re-)action. Those are defect, deficit and deviance. Defect Defect. These are pieces that are simply missing, broken, or non-functional. A narrative of defect is one that requires accommodation or preemption, as defects (in the narrative sense) cannot be corrected. This is language like “my child will never be able to love me … [My son’s] derpy little brain is broken” (pianomikey, 2015, para. 2) a common theme within charity and caretaker support discourse. Many parents of autistic children also perpetuate the myth of the non-existence of autistic adults. In doing so, parents become the de facto spokespersons for the disability, displacing the adults who actually experience the disability. Parents then appropriate the majority of rhetoric about autism, and with ample media reinforcement, the discourse revolves around only children. (Stevenson et al., 2011, p. 4) This implies something inherently wrong (the inverse of Difference) or a personal failure and is frequently accompanied by a tendency toward institutionalization (Eyal et al., 2010). Deficits Deficits. These, like defects, are missing, broken, or non-functional thoughts/behaviors/ competencies. Unlike defects, however, deficits can be corrected or at least compensated for. A deficit in social skills can be filled by instruction and practice. A cognitive deficit can be accommodated and ameliorated. The implication is that all that is needed is training; the blame is thus put on other’s failures (parents or institution responsible for said training). The focus for amelioration is to make people act normal by essentially encouraging expected social behavior (eye contact, etc.). ABA is an illustration of that (outward-oriented) framework. NARRATIVES IN THE AUTISM PARADIGM 43 Deviance. Deviance. This perspective identifies an alternate or extra sets of symptoms, behavior, or modes of thought recognized by and attributed to communication behaviors. The fact that deviance is a relative concept necessitates a framework for explaining the nature of the relationship between “normality” and “deviance,” and the way things (people, concepts, actions) can move between one state and the other. This relationship can be conceptualized in many different ways, however, each of which has its own implications. If things may be sorted into one category or another, collapsing everything into a single category is not only senseless, but also provides no new readings or insight. What is left is not a new category, but a failed one, the product of a system unable to properly do the job it was constructed for. It also invalidates the concept of choice within the binary system: one does not choose to engage in any specific (sortable) manner, so those choices are meaningless. It is not that they have somehow become normalized by their inclusion in the normal framework, it is simply that those choices no longer matter. They cannot be analyzed with any particular focus, since the characteristics sorting them, such as the relevant traits placing things in one camp or another, have been stripped of any significance they may have once held. Labeling something as deviant makes no claims as to the nature or origin of the symptom, nor its treatability, but rather focuses on the changes themselves, compared and contrasted against something else. The repercussions of this model can be significantly different depending on the way one reads the resulting equivalence. The approach, hinted at in the deficit section, consisting of normalizing the affected by making them act in a manner consistent with the norm, is completely unviable in the binary system of "normal" versus “deviant.” The issue(s) of sameness versus equality is further explored in Chapter 3. NARRATIVES IN THE AUTISM PARADIGM 44 Meta-Narratives These narratives may be loosely grouped into two meta-narratives, each of which shapes the overall ‘message’ conveyed by the story being told. Each suggests a different mode of reading/understanding the narratives as written. Debilitation Debilitation. This is by far the most common narrative; it asserts that no matter the specifics of a given example, what is happening is debilitating by nature. Most often used by outsiders studying autism and/or autistic people, it focuses more closely on the ontological identity of the condition, which, by history, context, and culture, remains frequently constructed in a negative register. Authors (and agents) invoking (meta-)narratives of Debilitation seem to take this idea not from outcomes (quality of life scales, statistics about employment and independence, self-reports by autistic people, either online or in other papers), but from the set of symptoms themselves: the deficits, (possibility of) severity, and other research with similar narratives. It is a self-sustaining cycle, in which authorial biases influence the content of their work, and the work supports the findings. This is not to say that there is no justification for or important work in that type of research, far from it. Studies of the consequences of symptoms are important as they provide indications of scope, severity, and nature of the deficits involved. Research into the mechanics of the condition is fundamental to both understanding and addressing the situation at large. Where it gets tautological is the circular quality of the narrative; the symptoms are debilitating because they are described as debilitating, which can be as much of a value judgment rather than one supported by direct evidence. Obviously, in narratives of severity, that framing is appropriate—at the extreme ends, almost any condition can be (seen as) debilitating. However, NARRATIVES IN THE AUTISM PARADIGM 45 in other work, the narrative becomes problematic, such as with research on prevalence or mechanics or diagnosis. The allocation is, in telling ways, a closed circle. The debilitating condition is inherently bad, no matter the actual results. It is debilitating because it is debilitating. No measures are needed to back this up (though they do show up on occasion); if something is said to be debilitating, it is both definitionally (because it frames the connection) and practically. In this narrative, autism is conceived of as an external force, acting upon its victims to cause their symptoms (and ensuing consequences). In this way, all agents are involved, such as primary caregivers (parents, guardians, long-time medical staff), secondary caregivers/people who affect their lives such as teachers, family, the government, institutions, society, even the afflicted themselves. Every negative consequence traces directly back to the debilitating factors; thus, Autism is anthropomorphized and constructed as the enemy. As debilitation focuses on the nature of the connection between agents, symptomology, and consequences, it provides a neat bridge between the focus of collateral narratives and aspects of the illness less explored. Rather, it frames the connection between the two. Thus, autism (for whatever value of autism given) is a condition that debilitates otherwise (potentially) normal (neurotypical) people in such a way that they end up handicapped and thus disabled-by-society and must deal with the problems that arise as a result. Likewise, for both difference and disease—the latter of which focuses more on proximate causes, rather than eventual consequences—a narrative of debilitation does limit/shape the way the problem is addressed. If something is debilitating, the natural (logical) approach is to remove that link, thereby limiting the cause (making intervention irrelevant) or changing things so that the cause is no longer a debilitating one (thus eliminating the effect). This lends itself to two major approaches— cure and treatment. While a narrative of difference may take a similar form, NARRATIVES IN THE AUTISM PARADIGM 46 its consequences are entirely different. Likewise for disability, neither approach is remotely relevant; neither cure nor treatment are options. Divergence Divergence. This holds that the autistic experience is so different from ‘normal’ that it can be neither understood nor described in any meaningful way by outside standards. The implied uniqueness and exceptionality puts one thus defined above judgment. Almost always invoked by caregivers and those somehow close to autistic people and/or autism, it is frequently used to reframe stories and events in (relatively) positive ways. Thus, even a highly medicalized disease narrative operating via the logic of defect can be (somewhat) positive within the divergence meta-narrative. (“These 'broken' people need to be cured and made complete, but on what grounds is someone else to make that decision for them?”) Similarly, a human-rights oriented difference model with a positive deviance framework can fall into the relatively negative meta-narrative of debilitation. (“These people need rights, and respect for their difference, but I'd still rather not hire or work with one, they're weird.”) The divergence meta-narrative seems at first to be a particular subset of difference, as it takes as its premise the notion that autism and/or autistic experiences are inherently different from those of the mainstream. The more or less neutral (and specific) narrative of difference as a whole simply positions autism as a variation from the theoretical norm of neurotypicality. Within the divergence meta-narrative, however, autism, autistic people, and the people using the narrative are conceptualized as distinct offshoots from the neurotypical. It is frequently a third party designation—one whose invocation is used to reflect on the person using it rather than autism or autistic people themselves. Note that difference is a spectrum, encompassing behavior, biology, diagnosis; whatever autism really is can be constructed as an axis along which the spectrum is measured. That axis, NARRATIVES IN THE AUTISM PARADIGM 47 however, is limited to autism itself, and people are placed along it as needed. Divergence, on the other hand, relies less on the phenomenon/tangible traits and more on the experience of autism, largely from the point of view of people with connection to autistic people than autistic people themselves. It is a narrative of exceptionalism, for autistic people and/or caregivers: autistic people are either exceptionally impaired or gifted in some way, and no matter which it is, caregivers are exceptional for knowing, caring for, or otherwise dealing with them. This is a narrative figuring highly in what is called the “Autism Parent” model, to which I frequently return. While not exclusive to parents (or even people, as seen in analysis of the organization Autism Speaks), it very much privileges the experience of parents and other, similarly positioned caregivers. In this model it is not uncommon to hear neurotypical caregivers say things like “we have autism,” positioning themselves as both expert and oppressed, as if the burden of their charge is theirs to bear as well. Divergence as a narrative pays little heed to the origins or “true nature” of autism itself. Where it comes from matters far less than how it feels and its impact on those affected by it. The nature and extent of this impact is its defining characteristic. It is so deep and so all- encompassing that the differences which give rise to it may as well create separate spheres of existence. The culture surrounding this narrative, however, cares very much about the origins and nature of autism, as it gives rise to some important trains of thought. If autism is a disease, particularly a genetic one, it is difficult for a parent (or to a lesser extent, other caregivers) to celebrate the unique traits of their autistic charges, even positive ones. Under this narrative, two things are made evident. First, that the autistic person is extraordinary for overcoming tragic NARRATIVES IN THE AUTISM PARADIGM 48 circumstances, and second, that the caregiver(s) are exceptional for raising an inherently broken child. Given this, narratives of loneliness and struggle pervade discourse, and there is often a strong inclination toward cure, or at least extensive intervention geared toward encouraging neurotypical behavior (Stevenson et al., 2011). If autism is a straightforward difference, however, the discourse shifts to stress just how different difference is. Autistic people are aliens, angels, foreign entities who cannot hope to be fully understood by anyone but their primary caretaker(s), and perhaps not even then (Piepmeier, 2012). If they can be understood, it is by virtue of the hard work put in by said caregiver(s) (or, in certain circumstances, other caregivers, representatives and/or institutions, such as Autism Speaks); it doesn't matter what the person may actually be saying (or typing, or signing or thinking) the real meaning is in the mediated interpretation (Ashby, 2011; Bryen & Wickman, 2011; Stubblefield, 2011). If someone can express an opinion to the contrary, they are either not really autistic or they are not really the one(s) communicating/thinking/speaking (Yergeau, 2013). Caregivers, in this case, are valorized for their work with/for people so completely different from themselves. This is the case no matter the degree of function or nature of the impairment. If the autistic person is high functioning or in some way gifted, they may be extraordinarily good at appearing normal or better-than-normal—another manifestation of the divergence narrative. Their caretakers, friends, affiliated institutions, or otherwise relevant entities are extraordinary for being able to support them/help them enough to function so well in ordinary society. On the other hand, if the person has significant impairment and cannot be raised up to normalcy or integrated into wider society, they become a special burden only their caregivers can bear. These burdens may be terrible, threatening diagnoses and behaviors that NARRATIVES IN THE AUTISM PARADIGM 49 must be fought or life changing developments that strengthen families and make superheroes out of regular parents (Ashby, 2011; Bryen & Wickman, 2011; Stubblefield, 2011). Interaction in paradigm The topic of (inter)action within the Autism Paradigm is, fittingly enough, socially awkward at best. The nature of autism-the-condition and historical context of autism-the- phenomenon automatically construct(s) a number of actors and agents, separated along lines of conflict and faction: autistic people (“auties” vs. “aspies”; “low-functioning” vs. “high- functioning”), caregivers (parents of autistic people vs. “Autism Parents”; individuals vs. groups), institutions (sociological, physical, historical; then versus now), and aid/advocacy groups (self-advocate vs. charity). They also entail abstract, conflicting positions/perspectives, including: The nested Ds of narrative (difference/disease/disability, deviance/defect/deficit, debilitation/divergence); models of disability (medical, social, rights-based); models of aid (charity, (self-)advocacy, policy); goals (cure, acceptance, accommodation, assistance, integration/assimilation); concepts of ASD(s) (spectrum, neurodiversity, disability, handicap); and power (privilege) structures (caregiver bias, diagnostic privilege). Therefore, it is no wonder that conflict and confusion are the hallmarks of the Autism Paradigm. In any given choice, conversation or activity, no matter how casual or inconsequential, a half-dozen factors may be in play, leaving (inter)action fraught with unseen landmines. Some blowups are spectacular and ongoing, such as the persistent friction between Autism Speaks and the autistic community (or autistic people as a whole, despite differing opinions/loyalties), while others burn slowly, such as the eternal fight for more and better resources, what constitutes “better resources,” who needs them, where they (should) come from, and why. NARRATIVES IN THE AUTISM PARADIGM 50 Chapter 3: Authoritative Texts This chapter analyzes the ways autism becomes structured into texts. Specifically, I examine texts ordinarily invested with status or authority: academic (social) science, diagnostic and technical-practical (treatment), work, scientific research, and legal writing. Such texts are produced by those in positions of trust, and the ones to which most appeals are made. Parents and caregivers appeal to these texts in their response to the condition and associated behavior. This textual authority moves laterally through parents and caregivers; such authority is directed toward the people in their care, about whom they claim to have the most unique knowledge. Obviously, the terrain covered by this chapter is broad, as formal texts come from different backgrounds, contexts, and approaches, and draw from the discourses around them, which vary from moment to moment. Indeed, the constantly changing interactions between discourse, texts and authority bring into question the very foundations on which conventional institutional knowledge and action depend: What counts as legitimate scientific research? What should be the nature of the relationship between research, theory and practice? How should scientific (and academic) communities respond to social changes, especially if those social changes challenge or invalidate fundamental doctrines? How is personhood constricted, and who has the right to determine, audit, and curate it? They reflect the complexity and controversy of the Autism Paradigm—the same set of fact(or)s can be used to prove a point, provide an alternate reading, attack or dismiss the premises of an argument, and/or be used in a different discourse (or even discipline altogether [Yergeau, 2010]). Therefore, to gain any traction on this slippery landscape, it is easier to divide subjects not by specific components or questions, but rather to choose a type of text, and see what the NARRATIVES IN THE AUTISM PARADIGM 51 paradigm looks like in that general area. This approach allows analysis to be narrowed along any topical dimension one could construct. In this case, the dimension pursued is authority, specifically, the areas of authority that include aspects of science, the law, and therapy. As there was no way to explore fully any of these areas, it is appropriate to think about textuality more broadly in order to understand how the concrete artifacts it represents claim disciplinary standing and knowledge of a nebulously abstract concept. Defining texts are vested with authority for much the same reason: they are tangible (if not always physical) representations of dominant and/or influential positions on a topic with unseen foundations and intangible discourse. Texts are tools for localizing indexicality—when someone points to something and says “that is autism,” the subject is defined internally by the assumptions, content, and parameters specified within the text itself, and externally by its type (genre). Authoritative texts create and serve as evidence of expert systems; their existence is proof of the existence of expertise on the subject, and (inter)action under its purview as evidence of a system with that expertise as its standard. One does not need to know anything about a subject to make a substantive claim; the expertise and legitimacy are intrinsic to the status of the text itself. Autism issues are so current and dynamic that the boundaries of what is known, the legitimacy afforded to orientations, and even the subject at hand change so rapidly that institutional practices—normally regarded as settled—become contested, tentative and searching. Writing about the subject provides an entry point and guide, lending dimension and shape to the narratives invoked and information privileged. Modern institutionally anchored texts are coded in the key terms that form the toolkit, previously discussed, even as these terms are not given seamless equivalents across institutions (medical, legal, clinical, social and economic) claiming NARRATIVES IN THE AUTISM PARADIGM 52 authority over an individual or group. Diagnostic writing, for example, is by nature silent on the issue of legal rights and responsibilities; discussions regarding the essential characteristics of the cluster of traits called “autism” are distinct from those regarding the legal repercussions of their conclusions. Asperger, for instance, mentioned the possible benefits of specialized education for the type of people he studied but stopped short of concrete suggestions; his positions on the issue of rights and/or responsibilities may at best be inferred from the manner in which the section is written. However, it remains imperative to note that the converse is not the case. Legal decisions must depend upon diagnostic work to determine what is needed and who qualifies for which interventions. Without a definition of autism, for instance, the Combating Autism Act (2006) would have no target(s) for its provisions. A framework for identifying people on the spectrum, even with suggestions about interventions, is almost incidental to whether it is treated as a disability requiring (worthy of) accommodation or a difference to be dealt with and overcome. In the following argument, I examine textual authority in four different subject areas: Research (what the condition consists of); Law (how institutions respond to it); Diagnosis (who is affected by it); and Social Science (what it looks like). From these elements, or some ideologically motivated selection within, through the perspective of their relative afforded authority, comes the ontological understanding of the condition. It follows, therefore, that before analyzing specific texts we must first explore the nature of authority itself. Authority itself In Beyond criticism: The authority of the school text, (1983) Luke, de Castell, and Luke argue: [T]he power of the “word” of the textbook is premised on the social rules governing the NARRATIVES IN THE AUTISM PARADIGM 53 environment of the reader, as much as on the intrinsic structural and linguistic features of the text. [And] meaning is contingent on the interaction between the reader's prior knowledge, the institutional setting within which the reading task is situated, the teacher who teaches the text, and the distinctive features of the textbook per se. This relationship … is delimited and constrained by the rules of schooling which position teacher, text, and student in hierarchical levels of power and authority. (p. 125) The teacher, in this case, mediates and legitimates (readings of) the text, standing in, in some ways, for the distant/absent author. Returning to the metaphor of pre-modern Christianity, it could be said that as priests interceded between commoners and God in pre-modern times, so too do large scale (para-)professional organizations, such as Autism Speaks, stand between distant/untouchable authority and the everyday lives of the lay persons. Such influential actors summarize, reify, and (re)present scientific breakthroughs, legal changes, developments in treatment(s), and other authoritative texts or events (Luke et al., 1983). The authority of these texts/events is further heightened by the perceived distance between reader/listener and author/source (Luke et al., 1983). This theory, espoused by David R. Olson, holds that this distance, intrinsic to textual language, is “a device for managing authority” (as cited in Luke et al., 1983, p. 121). Though Olson is concerned exclusively with textbooks and the classroom, this disjunction extends readily to the circumstance surrounding authoritative texts of all kinds. Theories, opinion, (re)presentations, and actions are given legitimacy by, among other things, distancing themselves from their originators/origins/authors. What begins as one person's opinion on a subject might be transformed to anonymous, authoritative fact by virtue of displacement onto or authorization by an institution or entity of sufficient power and/or reputation. By removing an author's name, authorship (ownership) of the text is transferred from NARRATIVES IN THE AUTISM PARADIGM 54 a singular, specific actor to the entity with which it most closely associated. This might be a social institution (the government), a form of media (television), an organization (ASAN, Autism Speaks), or an abstract concept (science, the Academy). Incidentally, these are the areas with which I wished to engage. This process of textual abstraction is one of modernization, specifically the dynamics of disembedding and reembedding. Text is taken from its originating context—a lone writer at a desk, a gaggle of undergraduate students in a classroom, actors and screenwriters frantically collaborating on set—transformed, stripped of its most obvious markers of authorship and perspective, and (re)produced as clean, authoritative text. It has been disembedded from the marked, unique time and space from which it emerged and re-embedded in the larger framework of abstract, authorless, authoritative work seen by the world at large. In The Consequences of Modernity, Giddens (1990) illustrates the concept by writing about his environment: Simply by sitting in my house, I am involved in an expert system, or a series of such systems, in which I place my reliance. I have no particular fear in going upstairs in the dwelling, even though I know that in principle the structure might collapse. I know very little about the codes of knowledge used by the architect and the builder in the design and construction of the home, but I nonetheless have "faith" in what they have done. My "faith" is not so much in them, although I have to trust their competence, as in the authenticity of the expert knowledge which they apply-something which I cannot usually check exhaustively myself. (p. 27) Just as he believes and participates in expert systems whether he wants to or not, so too do people live under laws (whether they want to or not). NARRATIVES IN THE AUTISM PARADIGM 55 The modernizing dynamic of textual authorization can be most easily seen in the case of law. Laws, while technically collaborative documents involving multiple authors backed by research, lobbying, and untold amount of work by low-level staff, seem to more or less just happen, as if no actual people were involved. Indeed, they seem almost to pop into and out of existence like storms, waves, or other natural phenomena. This is due as much to practice as to actual politics. Legal systems, particularly those in the US, are designed to deliberately erase authorship, simultaneously reinforcing their authority and fostering a sense of shared ownership. This has been the case since the inception of this country. The U.S. Constitution itself begins with “We the people” (U.S. Constitution, pmbl.). This country is, was, and ever shall be a victim of (and beneficiary of) this discursive “we.” The production and enforcement of law is steeped in and circumscribed by attempts to break down and delineate just who exactly counts as this “we,” and to what degree the other laws (their rights, responsibilities, and repercussions) ought to actually apply. These decisions are bound up and masked by the authorless authority of legal text— whoever is targeted by (or benefited from) it is constituted by their very existence within the legal framework. Although the larger contours of law and legal writing are well served by genre theory and narrative analysis, the nature of group selection and constitution is a perfect setup for analysis as discourse communities. As laws are fashioned, actors are separated into increasingly circumscribed groups, layering circles on circles until their target(s) are successfully isolated. It is a mechanical enough dynamic that even the hardest/most extreme reading of discourse community theory might prove illustrative; it fits Melanie Yergeau's (2010) quote from Patricia Bizzell (1999) perfectly: NARRATIVES IN THE AUTISM PARADIGM 56 These elements [discourse conventions] are so powerful that the discourse could be said to take on a life of its own, independent of individual participants; it could be said, even, to "create" the participants that suit its conventions by allowing individuals no other options if they wish to be counted as participants. (as cited in Yergeau, 2010, para. 2) Laws have no author because “we” are the author(s), no matter how little overlap there might be between the “we” doing the writing and the “we” doing the reading, or experiencing the effect(s). The arcane format and often inaccessible language of legal text opened the door to the sort of modernizing interlocutors mentioned before, middleman interpretive agents, such as advocacy organizations, popular bloggers, and people in the “parent and professional” publishing industry (Murray, 2006, 2008). Recently, many government agencies (and other institutions) have been using their online platforms to do this sort of middleman work as well, providing brief, accessible documents, such as Fact Sheets and FAQs, which use simple language and highlight the parts of the text most relevant to the readers they want to reach (Center for Disease Control [CDC], National Institutes of Health [NIH], Interagency Autism Coordinating Committee [IACC]). These entities and actors (collective and individual alike) interpret texts for lay persons, allowing them to engage with the content of work they might otherwise be unable to examine. Interpretation is not a neutral act. However literal a translation, even a direct copy of unedited text, the information transmitted changes with the context in which it was received. As Luke et al. (1983, p. 118) noted, the mediator (interpreter, translator, middleman) is placed within a hierarchical relationship with the person receiving the information. The stronger the reputation, influence, or institutional context of the mediator, the more pronounced that hierarchy NARRATIVES IN THE AUTISM PARADIGM 57 will be. The more the mediator engages with the text—even simply reformatting for easier viewing or simplifying language for ease of understanding— the stronger their personal influence on the reader's perception of the text (Dymphna, 2013). When [interpreters convey information] they cannot help but … discuss in an individually selective manner. As Elbaz (1981) has noted, [interpreters] are not “passive transmitters of knowledge.” Tacitly and intentionally, [interpreters] will emphasize and de-emphasize, select and exclude. This … interpretation of what is to be learned from the text helps define … what must be acquired as text knowledge. (Luke et al., 1983, p. 118) From institutional expertise to practical decision-making From institutional expertise to practical decision-making. The history and development of Autism has produced a peculiar culture of expertise in treatment and intervention for people (particularly children) with ASDs. The unusual evolution of ASD as a clinical phenomenon, particularly in conjunction with changes in approaches to treatment of mental illness produced the phenomenon of the “Autism Parent” (Leiter, 2004; Eyal, 2013; Momma Dulock, 2014; Mouland, 2014). Although development and implementation of programs and interventions are largely left to experts and institutions, the final arbiters of success are not the creators/implementers of those interventions, but rather the parent(s) themselves. Parents assemble into groups that are self-invested in a kind of expert authority derived from translating diverse experiences into possible interventions. The Autism Parent is the ultimate expert on their child, intimately familiar with the quirks/specifics/details of his or her condition and the factors which influence it. As a result, the success or failure of a given intervention is held to be evident, as the expert observer has both background and access to the child and their behavior. The most authoritative texts, and by far the most impactful, are thus the products of that experience, as described by parents (or parent NARRATIVES IN THE AUTISM PARADIGM 58 organizations) themselves. One aspect of the Autism Parent phenomenon is a tendency to form organizations. While this is the case for every condition or demographic group, the Autism Parent community has a particular affinity for assembling into groups. From the disparate letters and cases represented by Kanner to the current slew of parent-centric advocacy organizations, self-identified Autism Parents have banded together to share ideas, experiences, resources, research, and authority. These groups, as collective representations of expert knowledge (Giddens, 1990) produce/provide sources of aggregate knowledge on a range of relevant topics, and, as was often the case, become/are seen as more authoritative as they grow and gain popularity/traction. From this perspective, one might hold the information provided by Autism Speaks to be (one of) the most authoritative sources around. As the largest, best funded, and most prominent organization of its kind (Stevenson et al., 2011), it partners with public and private entities, funds research, provides testimony, and advises government on issues regarding ASD (Vimes, 2015). Their publications, posts, (re)presentations, and recommendations are often taken as canon (and appealed to as such) and influence parents, policy, and practice. In contrast, writing (and action) by Autistic people, particularly Autistic adults, is often very different in focus. While many do share tips and experiences, the emphasis is rarely on/framed as treatment or intervention. Indeed, much treatment-related writing is about the experience of/need for such measures in the first place. This is especially true of medically invasive and cure-related discourse. It is important to note that Autism Speaks, as with many other advocacy organizations, is an explicitly parent-centric organization. It is also explicitly and exclusively neurotypical. Until 2015, there were no autistic people on the board or in positions of influence. The closest was NARRATIVES IN THE AUTISM PARADIGM 59 John Elder Robison, who eventually left due to the unrepentantly violent imagery being used (Brown, 2013b; Robison, 2013; Silberman, 2015). It would be difficult to imagine the NAACP without African-American leadership, or the NOW without female leadership…so how can an organization which claims to benefit autistic people exist without autistic leadership, and insist that it can speak for autistic people? Additionally, the first, last, and only advisory board member on the autism spectrum, John Elder Robison, resigned in protest over their inflammatory rhetoric that compares autistic people to kidnapping victims, amongst other things (ravenswingpoetry, 2014, para. 3). As one can imagine, the divide between "Being Autistic" and "Putting up with someone else's Autism" is quite significant, given how social sleights and other communication issues are part and parcel of Autistic behavior, even though it doesn't have to be. As a result, with such lopsided representation, they can hardly presume to speak "for" Autism in any sense (Keslensky, 2012, para. 6). There are two major factors involved in the parent-centric skew of treatment/intervention authoritative texts, trends, and recommendations. The first, and perhaps most directly salient, is the fact that, by and large, ASD is still considered a child's disease. Even with increasing portrayals of Autistic/ASD adults in media, the image conjured by the word “Autism” is that of a child, helpless, cold, violent, and/or nonfunctional, in need of constant care and management. This is even reflected directly in the language and mandate of ASD-related law. Although legal documents are thorough and include caregivers other than parents, even those specify parents first, setting them apart from other caregivers, implicitly privileging that particular type of relationship. Therefore, as those vested with agency and/or legal power, parents are most NARRATIVES IN THE AUTISM PARADIGM 60 emphasized by relevant texts. The disconnect between the popular image of the damaged child and agentic adult frequently becomes an issue here, with dissenting Autistic people being told that, since they have and are capable of expressing an opinion, they must not really be Autistic, or if so, are not “Autistic enough.” Alison Tepper Singer, former Senior Vice President of Autism Speaks, spits out the discourse conventions of the typical autism essay: it's easy for anyone outside of the LFA [a/n “Low Functioning Autism.”] circle to denounce cure — they might have autism, but they're so far removed from, or so very only slightly overlapping with, the LFA circle that their ethos numbers range in the negatives. Writes Singer: I'm sure a lot of thought went into the decision to include Asperger Syndrome as one of the autism spectrum disorders. On a scholarly level I understand that Asperger Syndrome is an expression of the extreme social deficits that characterize all those on the spectrum. … But the "differing abilities" of persons with Asperger Syndrome are nothing like my daughter's autism. When we at Autism Speaks use the word cure, we are most often focused on the people at the lower end of the spectrum. I have not met a person with Asperger Syndrome who seemed anything like my daughter. … It is hard to consider her "differently abled" because she is not "abled." [emphasis added] (as cited in Yergeau, 2010, para. 4) Conflicts of interest complicate things, as the needs of caregivers and the needs of Autistic people (particularly adults) are frequently different, if not directly at odds with each other. A caregiver who desperately needs their charge to sit still and speak when spoken to has a radically different standpoint from the Autistic person who finds those things painful, NARRATIVES IN THE AUTISM PARADIGM 61 frightening, and might experience attempts to change their behavior as traumatic. The needs drastically vary from individual to individual as well. Buten (2004) suggests that clear definitions and descriptions of autism are frustratingly elusive. There are violent, hyperactive autistic people,'' he writes, ''and there are inert and gentle autistic people, verbal ones and nonverbal ones, heartbreakingly retarded ones and astonishingly brilliant ones, graceful ones and clumsy ones, obsessive-compulsive ones and easy-to-please ones, beautiful ones and ugly ones. (Buten, 2004) Additionally, he notes that even though people with autism might not read the emotions of others, what was certain was that emotions could be transmitted to them. ''I was amazed to learn, some years ago,'' he wrote, ''that many people who work with the autistic do not take the trouble to look them straight in the eye'' (Buten, 2004, p. 4). Examples of clashing perspectives like this characterize relatively common treatments, such as Applied Behavioral Therapy and Facilitated Communication (Sequenzia, 2015; Vismara & Rogers, 2010). Other, more extreme practices (chelation, MMS, chemical castration, hyperbaric oxygen treatment, stem cell harvesting) were at best useless, and always objectively damaging despite their continued use (Heasley, 2010; Gorsky, 2012; Sullivan, 2012; Diament, 2013; Emily Willingham, 2013). Some of these severe electroshock “aversives,” such as those used in the Judge Rotenberg Center (Gonnerman, 2012) have even been declared torture by UN Officials (specifically the previous and current United Nations Special Rapporteurs on Torture, Manfred Nowak and Juan Mendez), and are in the process of being curbed by legislature (Brown, 2013a). The other part of the disparity in representation/authority is that much writing about treatment and intervention does not match up. Rather than (or in addition to) differing NARRATIVES IN THE AUTISM PARADIGM 62 perspectives on specific courses of action, many Autistic people (and organizations) engage/address the purpose of/need for such things in the first place. The reasoning behind, rationale for, legitimacy, purpose, and ethics of treatment are all called into question. How does one then create an authoritative text on treatment including the voices of those arguing that they are ineffective, inhumane, misguided, unnecessary, even (at times) deliberately cruel? The unfortunate truth is that one can't. The existence of authoritative texts on treatment presupposes that treatment is necessary (or at least happening) and that there exists expertise regarding its function, implementation and performance, at least some of which is influential and frequently referenced for argument and action. As success grows it seems that the risks of scientific development increase disproportionately faster; when put into practice, solutions and promises of liberation have emphatically revealed their negative sides as well, and these have in turn become the objects of scientific analyses. And, paradoxically enough, in the scientifically partitioned and professionally administered world, the future perspectives and possibility for expansion of science are also linked to the critique of science. The expansion of science presupposes and conducts a critique of science and the existing presence of experts in a period when science concentrates on science, and therefore scientific civilization is subjecting itself to a publicly transmitted criticism that shakes its foundations and its own self-conception. (Beck, 1992, p. 4) Therefore, this is an important truth: at the highest level, in the texts/common knowledge most strongly relied on, there is an entire section in which Autistic voices are silenced (Stubblefield, 2011). While the language and focus of many of the authoritative texts mentioned here elide, avoid, or have no place for the agency/personhood of Autistic people, it is only in the NARRATIVES IN THE AUTISM PARADIGM 63 realm of action that they are excluded. It is perhaps most unfortunate that it is also the section that most directly touches their daily lives. These conflicts might be seen more closely in the next chapter. Medical and Scientific Research State-of-the art definitions of a disease are embodied in documents that delineate the scope of research and address. Research agendas define where questions of investigation should be oriented in order to better fulfill policy objectives. Public institutions in the United States shape questions that specify pragmatic choices to constituents. The departments connect expert research and textual knowledge to questions of public access. When it comes to autism, research agendas fall under the purview of the Interagency Autism Coordinating Committee (IACC). The federal government defines autism The federal government defines autism. Initially established by the Children’s Health Act of 2000, the IACC is comprised of federal agency representatives and members of the public appointed by the Secretary of Health & Human Services (HHS). The IACC produces a report (a “strategic plan”) on the state of (federally funded) research on Autism Spectrum Disorder(s). The work of the committee is to translate the best research and medical findings into a set of practical questions that allow for reliable—even if informal—detection of the conditions within a family or among partners or clients of an institution. At the time of writing, the latest strategic plan released is the 2013 update (Interagency Autism Coordinating Committee, 2013). It is organized around seven general topic areas, represented as “consumer-focused Questions” (formatting in original): Question 1: When Should I Be Concerned? Question 2: How Can I Understand What Is Happening? Question 3: What Caused This To Happen And Can It Be Prevented? NARRATIVES IN THE AUTISM PARADIGM 64 Question 4: Which Treatments And Interventions Will Help? Question 5: Where Can I Turn For Services? Question 6: What Does the Future Hold, Particularly for Adults? Question 7: What Other Infrastructure And Surveillance Needs Must Be Met? (Interagency Autism Coordinating Committee, 2013) Effects and narratives Effects and narratives. Each question invokes a topic area that is filled out by (1) a summary of the existing science, and (2) a review of all funded projects. Specific research goals are coupled with key aspirational objects, thereby either addressing the underlying problem or improving the situation, or both. These goals do not necessarily reflect or answer the corresponding question, but rather provide a window into the priorities and concerns of the committee in the form of a vision of the world as it should be. The oversight entity is comprised of people who represent a range of interests and backgrounds (including at least one person with an ASD diagnosis, parent or guardian of a person with an ASD, and members of various Federal and associated entities). The goals appear to address the needs and desires of a wide segment of the population and the institutions that support it. One can thus treat this as a sort of meta- authoritative text, lent legitimacy not only by virtue of content (Zachar & Kendler, 2012), but also by context (aggregate data by federal entity) and the composition of its members (representatives of every major invested group to which one may appeal). Author, text, and reader stand in different relation where texts derive their authority from being "authorized" rather than "authored." The document functions with stylistic claims for the public similar to a scholarly textbook for students. Luke at al. explain, extending analysis from David R. Olson (as mentioned earlier in the “Authority Itself” section). Olson parallels the relationship of speaker/ utterer/hearer with that of author/text/reader. NARRATIVES IN THE AUTISM PARADIGM 65 Within this schema, to accept or criticize the utterance, the hearer consults or questions the speaker. To accept or criticize the text, on the other hand, the reader consults or questions the author necessarily on the basis of the authored text. Both situations presuppose that the authority to adjudicate questions of meaning rests with the originator of the text or utterance. [T]he authority of the textbook comes, not in virtue of its authorial origin, but in virtue of its having been authorized by an administrative source, whose authority in turn is institutionally bound and not solely based on authorial peer group membership. The school text, unlike most other print information, such as scholarly journals, mass paperbacks, magazines and newspapers, is unique in its culturally stipulated role of authority. The legal enforcement and sanction of public schooling ensures not only a universal right to education, but also enforces participation. Thus, the textbook has a legally assured captive audience. Government prescribed and authorized texts constitute a common, almost universally shared experiential and linguistic basis upon which each generation's fundamental literacy and knowledge are based. (Luke et al., 1983, p. 122) Government reports document problems, just as school texts authorize narratives. A review of the 2013 IACC (Interagency Autism Coordinating Committee, 2013) report yields insight into themes in focus as well as trends in implementation/interest. For each question, a number of research objectives are specified and budgeted. A breakdown is included of the amount spent, progress, extent of relevance, and findings. “Gaps, Needs and Opportunities” bound unknown things, by bringing what is to be done in order to know into the orbit of textual authority. There are significant variations in activity and results for objectives identified, thereby releasing interest in and calls to research extended projects. No question is deemed fully NARRATIVES IN THE AUTISM PARADIGM 66 answered, but many meet or exceed desired budget allocations. The IACC employs that information to produce several other reports and papers, addressed to different demographics and comprehension levels. The 2012 Global Landscape of Autism Research report (Interagency Autism Coordinating Committee, 2012) for example, is a highly accessible and visual summary of their methods and findings. As an overview of the IACC researchers' project, the report avoids engaging with the specifics of ASD entirely, focusing instead on the breakdown and interpretation of the results of research. This circumvents most issues related to rhetorical/narrative choice, leaving it as, at most, an artifact organizing into topics data worth noticing. Government institutions operate within legal definitions of policy that exhibit different orientations toward human needs as the product of disease, disability or difference. Law and Policy Legal texts are authoritative by definition and design. As such, laws are written in ways that appear authorless, a fact appearing entirely in the institutional landscape as if it had always been there. Therefore, legal framing has the most tangible effect on the treatment and perception of ASDs and autistic people in terms of employment, education, and quality of life. Where healthcare is concerned, group membership is paramount. People are separated into neatly bounded and constructed groups—discourse communities; categories constructed through the absolute delineation of legal definitions arrange people much more directly—and categorically— than the organic bounding process of identity and rhetoric. From that separation derives the need for action, both toward the identified population, and encouraged, or demanded from, said group. The narrative(s) applied to the resulting decisions (the grouping itself, as well as the actions decided upon), through the filter of the surrounding legal, cultural and scientific contexts, NARRATIVES IN THE AUTISM PARADIGM 67 produce the story explaining the events occurring, and shape the interpretation and application of the law beyond the letter of the legal framework itself. There are such legal frameworks in place for disease, disability, and difference, each having its own definitions, criteria, authority/ies, and means of enforcement. These frameworks do not all go together, leaving room for competing definitions and treatment under the law based upon the circumstance of a case that comes to adjudication. The law sorts people into victims and potential victims (of crime, circumstances, or in this case a condition and those affected by it), the former requiring treatment and the latter protection. While individuals are socially deemed responsible for their own health and care, each person does so within a framework of institutional expertise and risk assessment. Legally, institutions are obligated to direct funding for treatment/cure, as well as modes of managing/minimizing the risks presented to the public. In the case of autism, these two frameworks differ in attribution scheme and thus on responsibility/blame. If autism is a disease, everyone is a potential victim, and it falls to the government and other institutions with the resources and expertise to manage and cure it in the name of the public good. If autism is a disability, however, autistics are its victims, and it falls to individuals to manage, with the government's role being to provide guidance and redress for discriminatory or dangerous action. Disease requires care, treatment, and cure, while disability requires accommodation and respect for autonomy. Both disease and disability are states in which actors are out of sync with what is considered to be the normal state for the demographic and contextual niche they inhabit. They are (or produce) differences, and differences come with increased risk of discrimination, no matter how benign or trivial. To the extent that these differences may be said to increase the risk NARRATIVES IN THE AUTISM PARADIGM 68 of (what some might call) unfair or negative discrimination, the law is compelled to provide protection from that risk. This holds true no matter the origin of the difference. Unfair treatment is unfair treatment; therefore, the question becomes: What constitutes unfair treatment? Disabilities Disabilities. These (as defects, differences, or deficits) are afforded a measure of legal protection, but disabilities generally invite interventions at the individual and/or institutional level. The onus is on the person with a disability to identify and prove their disability and to act accordingly, requesting accommodation and assistance as needed in individual situations/contexts. While the law serves to encourage, circumscribe, and direct institutional development and behavior (requiring wheelchair-accessible bathrooms, affordance of reasonable accommodations in public service), it is primarily a means for remedy, addressing violations/problems after the fact. Diseases Diseases. These, on the other hand, are identified on a larger scale by population research. Although demographic associations are discovered by epidemiological inquiry, it is generally accepted that illness can, in theory, strike almost anyone. For that reason, disease is treated as a public issue, monitored and dealt with by agencies whose mission is to control, treat, and manage them as they appear. Illnesses are generally understood to be temporary and largely out of one's control. As such, institutions are less compelled to accommodate individual cases in the same way they do for other, more easily defined disabilities. Given the potentially communicable nature of disease, however, it is also generally understood to be in the best interest of institutions to deal with and/or manage all incidences (and those afflicted) with a measure of care. Chronic and severe diseases or illnesses occupy an alternative, more liminal space, being external, inescapable, faultless, but not temporary (and often far less communicable). With the NARRATIVES IN THE AUTISM PARADIGM 69 sheer number of variations and circumstances, legislation regarding the treatment/management of specific diseases at the institutional level is considered less than tenable. Individuals are seen as free actors/agents, and thus responsible only for their own health; no action/responsibility is expected or required beyond avoiding active and malicious endangerment of others. Legally, the framing of autism-as-pure-neurological-difference is at best irrelevant, at worst counterproductive; if autism is just another mode of being, there is nothing for the law to do. Autistic people are (technically) given the same rights and responsibilities as the rest of the public. Read positively, this could mean that autistic persons in need of services would be able to access them individually, on the basis of their specific needs, whether they be educational assistance, employment access, or use of more generic disability services. Read negatively, it would mean the removal of ASD(s) as a valid reason for claiming any benefits, and removing autistic people from the class of vulnerable persons. Regardless of whether or not autistic people are allowed access to general disability services, if autism is no longer included in the purview of legislative influence (that is, no longer requiring remedy, prevention, or management), existing state commitments would no longer require funding, including both social services and scientific research. Should such a thing come to pass, it would certainly be used to increase pressure on the APA to remove ASD(s) from the DSM, the details of which are discussed elsewhere in the section. The various narrative interpretations of autism, combined with complex legal structures, together, form a matrix of textual authority where governmental responses and responsibilities become a site of controversy. Controversy. Controversy. Paula Durbin-Westby (2010) points out that Public Law 109-416 (“the Combating Autism Act of 2006”) sets up an adversarial relationship from the beginning, in both NARRATIVES IN THE AUTISM PARADIGM 70 in the title and the repeated use of the term “surveillance.” Just as the “war on poverty” and the “war on drugs” were set up to motivate state intervention, so the “war on autism” features autism at the outset as not only a condition to be treated, but also as an active, agentic enemy to be combated. The language centers largely on autism itself as the focus of engagement; people and other entities/institutions are just foot soldiers in a public army assembled to conquer autism itself. The rhetorical vehemence of this focus is somewhat peculiar in its target, however, in light of the vague characterization of the disorder itself, and the complete lack of discussion of its effects or ramifications. Despite its name, the Combating Autism Act (2006) contains remarkably little about autism, autistic people, or why, exactly, it should be combated in the first place. Instead, it lays out broad strokes for research and action, mainly aimed at early detection and intervention and raising awareness. The Combating Autism Act (2006) was uncomfortable from the start. The war metaphor is a rhetorical figure that arouses the public while thwarting its own cause. From its inception, many autistic people have taken offense at the war rhetoric in the title, with its implication of violence to bodies, in this case autistic bodies. People who desire a cure for, or prevention of, autism often point to the short title as "proof" that autism must be combated aggressively, endorsing an "anything goes" philosophy, and eschewing anything less than the complete eradication of autism. The "combat" metaphor tends to encourage the many untested and unproven treatments which sometimes have resulted in devastating and even fatal outcomes for autistic people and other people with disabilities. (Durbin-Westby, 2010, para. 4) The war metaphor relies on narratives of debilitation, defect, and deficit. Although people in general figure relatively little in the overall wording of the text, there is a clear caregiver bias NARRATIVES IN THE AUTISM PARADIGM 71 in evidence. Autism and other developmental disabilities are constructed as children's disorders, for which other caregivers are responsible. Independent, agentic individuals are almost always referred to in conjunction with caregivers, while children and implied incapable individuals appear in a few other contexts. The assumption that autistic people are (primarily) children is also implied structurally, as the text goes immediately from “individuals” to “children” at the first mention of autistic people: To increase awareness, reduce barriers to screening and diagnosis, promote evidence- based interventions for individuals with autism spectrum disorder or other developmental disabilities, and train professionals to utilize valid and reliable screening tools to diagnose or rule out and provide evidence-based interventions for children with autism spectrum disorder and other developmental disorders. (Durbin-Westby, 2010, para. 2) The Combating Autism Act (2006) references children directly and/or indirectly four more times before returning to “individuals and their family members, guardians, advocates, or authorized representatives; providers, and other appropriate individuals” (as cited in Durbin- Westby, 2010, para. 2). The terms “child” or “children” appear six times and are further implied another four. Caregivers, in the form quoted above and otherwise, appear seven times and are implied in one more. Adults are mentioned only once and further implied in another four, all but one of which include the caregivers indicated above (Combating Autism Act, 2006). The rhetorical implications of the Act are clear: autism is a harmful force targeting children and childlike individuals incapable of caring for themselves, making decisions, or speaking on their own behalf except as a token representative (Durbin-Westby, 2010). The NARRATIVES IN THE AUTISM PARADIGM 72 condition must be fought by any means possible on any front to be found, “including pathology, developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, neurobehavioral development, endocrinology, gastroenterology and toxicology” (Durbin-Westby, 2010, para. 2). As an enemy, individuals occupied by the affliction must be kept under clear and constant watch, surveilled, tracked, and assessed. Autism appears as a boogeyman, a threat with no clear attributes, no modes of attack, no evident harm entailed, but frightening nonetheless. The omission might seem natural—other diseases, disasters, and violence do not need their consequences enumerated in law. Rather, human adverse events stand out like a beacon against similar laws relating to disability. The law the act is most closely related to, both citing and amending (Developmental Disabilities Assistance and Bill of Rights Act, 2000) begins with acknowledgment of the rights, responsibilities, and personhood of the people under its aegis. In contrast to Combating Autism Act (2006), Developmental Disabilities Assistance and Bill of Rights Act (2000), focuses on people rather than their condition. Developmental Disabilities are differences, which might present challenges, but in no way lessen the worth, agency, or personhood of the person(s) affected. Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society. (Developmental Disabilities Assistance and Bill of Rights Act, 2000) The rights of individuals are placed in a defensive posture that require protection through NARRATIVES IN THE AUTISM PARADIGM 73 “mainstream” inclusion efforts, aggressively integrating individuals within a population into society. International agreements, such as the 1975 UN Declaration on the Rights of Disabled Persons share similar traits, with language such as: Disabled persons have the inherent right to respect for their human dignity. Disabled persons, whatever the origin, nature and seriousness of their handicaps and disabilities, have the same fundamental rights as their fellow-citizens of the same age, which implies first and foremost the right to enjoy a decent life, as normal and full as possible. (“Declaration on the Rights of Disabled Persons,” 1975) The United Nations even provides an explicit link to mental disabilities, covering both categories under which autism is argued to fall. Whenever mentally retarded persons are unable, because of the severity of their handicap, to exercise all their rights in a meaningful way or it should become necessary to restrict or deny some or all of these rights, the procedure used for that restriction or denial of rights must contain proper legal safeguards against every form of abuse. This procedure must be based on an evaluation of the social capability of the mentally retarded person by qualified experts and must be subject to periodic review and to the right of appeal to higher authorities. (“Declaration on the Rights of Mentally Retarded Persons,” 1971, para. 7) The Americans with Disabilities Act (1990, as amended with the ADA Amendments Act, 2008) also contains language regarding the challenges, needs and demographics of the people concerned, while explicitly (re)affirming their dignity and humanity. The ADA declared that people with disabilities are welcome throughout American NARRATIVES IN THE AUTISM PARADIGM 74 society. The ADA assumed, rather than doubted, that people with disabilities can be productive workers contributing to our economy and the support of their families. Perhaps most important, the ADA was a formal acknowledgment that people with disabilities are American citizens with the same rights as other Americans: a right to belong, a right to participate fully in the American experience, and a right to have dignity and respect in the workplace and beyond. (Obama, 2007, para. 1) In reality, of course, the rights of autistic people differ markedly along some lines of identification, diagnosis, and intervention. Government policy appears stressed by commitments to intervention that conceptualize the condition as warranting intense intervention, while at the same time needing restraint in order to respect the rights and dignity of the individuals. In practice, this restraint is too rarely enforced (Gonnerman, 2007; Brown, 2014; Davies, 2014). Just as the legal framework defines who falls under its purview, offering or refusing rights or aid, so too do diagnostic science and nosology determine the authenticity of claims to the condition, and delineate the contours of autism. Definitions and changes in the diagnosis affect not just the individuals it labels themselves, and whether they can or should be subjected to the aforementioned legal process, but also their social surroundings and the organizations they form, cementing or fracturing the bonds of identity and group belonging. Diagnosis The Diagnostic and Statistical Manual of Mental Disorders (DSM) (American Psychiatric Association, 1952, 1968, 1980, 1987, 1994, 2000, 2013) has been the primary diagnostic reference for mental health professionals since 1952, particularly in the US. The DSM is accorded a particular authority, deployed in law, education, medicine, and any institutional setting where it might conceivably be relevant. Part of this authority is the appearance of NARRATIVES IN THE AUTISM PARADIGM 75 absolute neutrality and objectivity (Zachar & Kendler, 2012). Even in controversies, such as that currently surrounding the changes between the DSM-IV (APA, 1994) and the DSM-5 (APA, 2013), arguments generally center around issues regarding the ordering (arrangement and content) of the manual, not the changes as socio-politico-cultural statements in and of themselves. The authority of the texts draws upon the respect for its specified procedures, adapted by protective, diagnostic, treatment and support institutions of intervention. It also draws upon (the perceived objectivity of) science, when its progressive outcomes warrant change. The question of diagnosis in the individual case is particular and state-of-the-art standards of judgment in cases of autism remain uncertain. The role of contestation within institutions, generally, has become the subject of critical inquiry. Greenberg (1997) and Zachar and Kendler (2012) argue that there is much more to diagnostic decisions than what is first seen. Contemporary discussion regarding ASD(s) resemble the arguments over the definition and classification of planets, as well as the status of homosexuality as a paraphilia, in Zachar and Kendler’s (2012) article: “The removal of Pluto from the class of planets and homosexuality from the class of psychiatric disorders: a comparison.” Diagnosis poses not only a question of what disorder or paraphilia actually is, but also which evidence to choose or how to frame it or even whose views to privilege, and even what kind of science should be considered valid, what the mission of the APA is, how science and policy should come together, what expertise is, what role experts should play in the process, and how scientific and institutional decisions are made in general. Institutional contestations, of course, are complicated by the infighting and conflict endemic to large organizations of any sort. The existence of a clandestine “Planet Definition NARRATIVES IN THE AUTISM PARADIGM 76 Committee” (opposing the official IAU “Working Group on the Definition of a Planet”) is a relatively amusing example; the “Ad Hoc Committee Against The Deletion of Homosexuality” (in (preemptive) conflict with the APA’s “Committee on Nomenclature and Statistics”) rather less so. Definitions matter. Initial classifications assume authority, and are difficult to change, much less dislodge. Institutional inertia accounts for a fair bit of the resistance to change. The construct of homosexuality has immense sociocultural significance. It has long been considered a perversion that is both immoral and illegal (see Leviticus 18:22 for male homosexuality). In modern astronomy, the scientific classification of the nine planets became a tradition to which people were committed. In psychiatry, commitment to a tradition preceeded the classification, primarily because cultural, religious and legal prohibitions against homosexuality predated the birth of modern psychiatry. (Zachar & Kendler, 2012, p. 2) The matrix of motives within the autism paradigm exhibits similar stresses, particularly when nosological classifications create grounds for diagnostic determination for populations and individuals. Such determinations regulate questions of access, qualification, and care. Definitions matter. Definitions change over time. In the first iteration of the DSM (APA, 1952), autism was mentioned only as a subset of what was then known as childhood schizophrenia, heralded by some as the 'only true childhood disease' (Eyal et al., 2010). Though still mentioned as a facet of childhood schizophrenia, the DSM-II (APA, 1968) expanded the definition to include “autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother's; and general unevenness, gross immaturity and inadequacy of development”, related to but distinguished from mental retardation, which might be comorbid NARRATIVES IN THE AUTISM PARADIGM 77 with the disorder. The first (official, diagnostic) mention of autism as a phenomenon in and of itself was in 1980, with the DSM-III (APA, 1980). These criteria were listed: • Onset before 30 months of age. • Pervasive lack of responsiveness to other people (autism). • Gross deficits in language development. • If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal. • Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects. • Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia. Like previous iterations, autism was classified as strictly a children's disorder, but now it was divorced from childhood schizophrenia. The DSM-III designation marked the beginning of Autism's framing as being primarily social in nature; the communicative and developmental aspects were (already) being shunted off, to be left in a space that would later evolve into Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). The DSM-III-R (APA, 1987) was the first to describe autism as not exclusive to infancy. It was also the first to give variation/scope to the condition; offering a definition that was broken into three sections—social, communicative and developmental—with a total of 16 criteria (“items to choose from”). Only 8 of the 16 criteria were required for diagnosis, of which two must be social, while only one was required from each of the other categories. (The last criterion, NARRATIVES IN THE AUTISM PARADIGM 78 “onset during infancy or early childhood” was not specified as mandatory for diagnosis, though its placement in the section strongly implies that it may as well have been). The characterization of autism as a primarily social disorder was thus less direct than that of the DSM-III (APA, 1980), but no less present. The DSM-IV (APA, 1994) and DSM-IV R (APA, 2000) retained the flexibility of the DSM-III as a list of criteria, but reduced the requirement to only six items. Though the distribution experienced no quantitative change, their functional importance was amplified: the emphasis on social symptoms now comprised fully a third of the diagnostic criteria. The DSM- IV (APA, 2000) also introduced the categories/diagnoses of Asperger Syndrome and PDD-NOS, a catchall for the cases that didn't quite fit. At this point the spectrum concept had taken root, with the correlation between age and impairment. The DSM-5 (APA, 2013) represents a radical change, reducing the emphasis on social impairment as characteristic of ASDs, and removing Asperger Syndrome completely. The very nature of the diagnostic tools shifted as they became more descriptive than prescriptive/ diagnostic; “examples are illustrative, not exhaustive” (APA, 2013). Moreover, the categories were regrouped in terms of a developing political-economy of communication skills; that is, into deficits “in social communication and social interaction across multiple contexts” and development, specifically “Restricted, repetitive patterns of behavior, interests, or activities (req. 2)” (APA, 2013). While it is necessary that symptoms are “present in the early developmental period,” (APA, 2013) it is also acknowledged that they “may not become fully manifest until social demands exceed limited capabilities, or may be masked by learned strategies in later life” (APA, 2013). The structure of the “Autism Spectrum Disorder” in the DSM-5 (APA, 2013) maintains NARRATIVES IN THE AUTISM PARADIGM 79 the primacy of social deficits in characterizing autism, but only barely. While social elements are still listed before the others, diagnosis no longer requires more social symptoms than others; all three facets—social, developmental and communicative—are given equal weight. In some ways this might be said to better comport with current conceptions of autism. While it is often spoken of and represented as a social-communicative phenomenon, when funding, policy, and appeals to authority come into the picture, the developmental/behavioral issues are those invoked. Assistance is more likely to be directed toward allowing children to reach developmental milestones than allowing them to fit in. [The DSM-5] is expected to combine the subgroups of Asperger's syndrome, pervasive developmental delay (PDD) and autistic disorder into one broad category—autism spectrum disorder, or ASD. While some wondered if combining the criteria for these subgroups in DSM-5 would lead to fewer people being diagnosed with autism, a study … suggested it will have little effect in that regard … data collected from 12 university- based sites suggests that removing these subtypes will make it easier to make accurate, consistent ASD diagnoses … On a practical level, having one overarching diagnosis in DSM-5 may help some people with ASD access additional treatment and support, Hanson notes. People with diagnoses such as Asperger's have not always been eligible for certain services. (Glickman, 2012, para. 2) Contrast with Chamaka and colleagues (2008): The most striking observations were that all of them pointed out that unusual perceptions and information processing, as well as impairments in emotional regulation, were the core symptoms of autism, whereas the current classifications do not mention them. Our results suggest that what has been selected as major signs by psychiatric nosography is NARRATIVES IN THE AUTISM PARADIGM 80 regarded as manifestations induced by perceptive peculiarities and strong emotional reactions by the autistic persons who expressed themselves. These considerations deserve to be taken into account by professionals to better understand the behavior and needs of autistic persons. (Chamaka, Bonniaua, Jaunay, & Cohen, 2008, p. 271) What one—the DSM and people working on classification—frames as defining criteria for diagnosis, another—autistic people and other scientists—may see as mere side effects or consequences of what they identify as the real defining characteristics of autism. This is the first place significant disjointedness between popular understanding of what autism is and the diagnostic umbrella term of autism surfaces. The formula applied to formally determine a categorization as autistic is separated almost fully from the autistic experience, both as observed by a third party and as lived by an autistic person. This schism is reflected in policy and treatment priorities as well; despite continued perception/representation of autism as a primarily social phenomenon, practical and theoretical work(s) alike focus on communication, development, and behavior of the individual. Diagnosis and identification of needs are certainly pragmatic issues; of the elements of autism, social deficits are least likely to cause harm to self or others. They are also the most difficult for outside forces to deal with, manage, and influence, which makes them the most visible, heavily reinforcing the persistent narrative of autism as a social phenomenon. This might, in part, be due to the fact that for most people, social deficits are the only ones they encounter as autism, particularly in media. More severe symptoms tend to be associated with larger and more nebulous concept of mental illness, especially due to the relative lack of balanced/accurate information available. The choice to eliminate Asperger Syndrome as a separate category—folding what was NARRATIVES IN THE AUTISM PARADIGM 81 known as Autistic Disorder into the more general term Autism Spectrum Disorder—is one of the main points of debate and discussion coming from these changes. There are three main discursive themes drawing from and fueling controversy: identity (who is, and what it means to be, autistic), process (why and how diagnostic criteria are changed, and the implications thereof) and consequence (financial and policy implications). The document changes are technical, but these carry significant implications. Identity Identity. Many people with Asperger syndrome (generally self-identified as “Aspies”) feel that the DSM changes constitute a denial of their identity as well as their diagnosis. This is a visible enactment of the argument between person-first and identity-first language. Under a person-first paradigm relatively little would have changed; rather than being a person with a set of symptoms called Asperger Syndrome, they became a person with a set of symptoms known as Autism Spectrum Disorder. Under an identity-first construction, however, persons who identified as Aspie(s) have been stripped of their current identity and forced into another, one already occupied by “Auties” (Autism and Oughtisms, 2012; Brown, 2012; Heilker, 2012; Monje, 2014; musingsofanaspie, 2014). Although closely related, the Autistic and Aspie communities sustain discrete (if not necessarily distinct from an outside perspective) culture, language, and perspectives, much of which is situated within direct conflict between the two (Baggs, 2010). Process and consequence Process and consequences. Inherent in discussions of textual changes is the issue of what, exactly, is being altered. Adoption and deletion, editing and revision of categories matter. The nature of what is called a disorder goes beyond a question of narratives and becomes interpolated into the realm of nosology, where experts feel out the boundaries of what is and is not within their purview for classification. NARRATIVES IN THE AUTISM PARADIGM 82 Expert definitions set out expert parameters for diagnosis and trigger protocols of intervention. This discourse is not usually directly accessible to those targeted for intervention. Obtaining the DSM is an expensive endeavor, and for those unfamiliar with diagnostic terminology, reading it can be a daunting task. Even if one does understand the language and notice the differences from edition to edition, it takes a certain amount of familiarity with the context in which the changes are occurring to truly understand the implications. An interpretation regime provides a window into that otherwise inaccessible discourse. This is an area where the ‘middlemen’, groups, such as Autism Speaks, ASAN, newsblogs, and other ASD blogs and communities flourish, posting updates to criteria and discussing the repercussions of updates as they come along. The middle discourses are taken by stakeholders into common discussions. The interpretation communities extend over the longer term to the social science community that researches various aspects of outcomes, and disability writers whose compositions work to express the stories of autism from different points of view. (Social) Science While the other types of text might be examined for narratives—explicit and implicit alike—social science work is doubled, both having and generating narratives of its own. The goal of a social-scientific work is to observe or investigate a group (or institution, idea, person), and tease out patterns, provide descriptions, pose questions, and offer hypotheses. Social scientists are, in a way, all about creating narratives and taking a thing apart and showing the world how it works. It makes the strange unstrange and the unstrange strange. This work does not happen in a vacuum, however. Social science inquiry is not free of its context and creator(s), and those come with narratives of their own. Disciplinary lenses highlight aspects of the world in different ways; an artist might look at a painting and see technique; an NARRATIVES IN THE AUTISM PARADIGM 83 (art) historian, a time, a place, a movement; a psychologist, the melancholy of a face or disturbing imagery, and so forth. Accepted theories (even those a study intends to challenge) give direction; well-worn narratives of well-worn subject matters offer a jumping off place from which to view the world. Social scientists work in ongoing fashion. Personal context too—the beliefs of the author(s), the choice of subject matter, the assumptions made, limitations accepted, the data considered relevant or irrelevant—all construct and circumscribe the narratives a social scientist layers into one's work. The time and place, common knowledge and common sense, cultural context, boundaries of acceptable and taboo, a narrative that seems obvious and benign in one context might be offensive or literally incomprehensible in another. All of that comes into play before the work is even started, just like everything else in life. Social science papers take on all of these elements, then attempt to lay out explanations about their subject within context of these background narratives. Disability writing (and feminist writing and writing by other marked groups) increasingly foregrounds some of those elements, locating the author in time and space and context with respect to the work. A few examples spring readily to mind: “The Blurring of Boundaries between Research and Everyday Life: Dilemmas of Employing One's Own Experiential Knowledge in Disability Research” (Mogendorff, 2013); “You're such a good friend: A woven autoethnographic narrative discussion of disability and friendship in Higher Education” (Castrodale & Zingaro, 2015); and “This is the Anthropologist, and she is Sighted: Ethnographic Research with Blind Women” (Hammer, 2013). For the purposes of illustration, however, there is no better example than Melanie Yergeau’s work, “Clinically Significant Disturbance: On Theorists Who Theorize Theory of NARRATIVES IN THE AUTISM PARADIGM 84 Mind” (2013). She begins with an extended anecdote from her life: a situation in which she was involuntarily committed to a psychiatric ward, exploring her reactions, as well as the discourse of others during the event. Yergeau emphasizes the surreal quality of the experience, and the way she went from being a thinking, agentic individual to a helpless vessel for her so-called problems. Protests and queries were ignored or dismissed—“that's just your autism speaking” (Yergeau, 2013, para. 2). In one of the worst possible ways, publicly, on campus, a new-minted professor just starting her tenure-track job, she was granted an intimate view of an experience relatively few in mainstream academia experience from the inside. Fewer still are able to write about it, much less apply it to their work as thoroughly as Yergeau, clear testament to both her rhetorical-analytical skill, and the essential embodiment of autism and disability studies. This analysis repeats fractally, with Yergeau attempting to prove sanity and wholeness of mind by first deploying general academic knowledge and mastery of her field's background, then personal achievement and analysis, sliding into analysis of the event itself, reflexively processing and questioning the mechanisms and implications of the physical, mental, and rhetorical violence being done to her. What is ethos. What is reason. Who is the Other and when are they a what. What is kairos. What is of the moment, this slow, agonizing moment, wherein I am trying to convey my authentic self. Questions became statements, and statements became symptoms, and symptoms became my arhetorical body, a body restrained and discarded. Regardless of what I said, it was my autism saying it. My body became site for ventriloquist rhetoric, words that never were. (Yergeau, 2013, para. 2) The theory of mind has long been used, both implicitly and explicitly, to dehumanize autistic people. This dehumanization often proceeds beyond the figurative denial of rights or NARRATIVES IN THE AUTISM PARADIGM 85 reason, slipping into literal denial of personhood, of humanity itself. Autistic people are likened to ghosts, furniture, denied inclusion in the category of primates (a stellar feat of biology if ever there were one), they are deemed incompetent (as a class) to recount their thoughts, feelings, history, even that which took place moments before the recounting. Autistic thought is suspect, writing uncertain, and scholarship nonexistent. Those capable of such feats—compelling writing, academic scholarship, (self) advocacy—are aberrations, feigning their work, their autism, or both. Anything more is at best an exotic trick, a clever specimen aping humanity, such as Clever Hans, the famous “counting” horse of old (The London Standard, 1904; Pfungst, 1911; Radford, 2012). Such language, such argument puts one in mind of early achievements by other people deemed inferior, such as Phyllis Wheatley, a slave poetess whose words and personhood were put to trial—in Europe, as no state in the union would even entertain the notion—before being deemed possible, let alone hers. More recent parallels are found in contemporary feminist and anti-oppression work. The fact that autistic thought must be verified by nonautistics very much recalls the manner in which women’s thoughts must often be verified or repeated by men before they might be heard or considered valid. Of course, this held true for many marginal identities, as illustrated in an excellent skit from The Daily Show with Jon Stewart, (O’Neil, 2006) wherein Senior Race Relations Correspondent Jessica Williams found herself interrupted enough that she hired a ‘helper whitey’ to speak for her and pave the way. However, as with most intersectional sites, scholarship and practice fall short of their true potential for transformative change. Despite readily apparent parallels and the obvious potential for alliance and cross-pollination, disability studies and feminist studies are often little more than acquaintances in power and product. Feminist and disability activism share more in practice, but NARRATIVES IN THE AUTISM PARADIGM 86 sabotage and compete with each other more often as well; feminist writing is in some ways notorious for ableist language and appropriation of disabled experience, while disability advocacy groups fall prey to the same sexist, misogynist issues endemic to even the most progressive groups. Furthermore, disabled, non-neurotypical, and transsexual women share the same sort of doubled-yet-singular oppressions as that of other intersectional identities, such as Women of Color (WoC), but are only recently coming into their own as distinct, recognized, and theorized populations. This chapter has reviewed the manifold nature of textual authority in the latticework of Autism as a modern, social condition attributed to a population of humans who are in need of diagnosis and interventions. Textual authority is an abstract concept which, through representation, is invoked at the general and individual levels. Social institutions structure power through legal, scientific, diagnostic and other texts that distinguish known from unknown issues, topics that need to be addressed to justify intervention, and appropriate kinds and levels of intervention and access for individuals and their associates, a combination of parents, caregivers, friends and others. Texts with technical definitions of autism have changed over time, necessitating varied interpretative groups to assemble, translate, question, contest, and advance through their investment and relationship with people so categorized. The interventions shape and are shaped by the variabilities established by the spectrum and the disagreement over ambiguous features of difference from conventional norms of communication. Where there is difference, there are opportunities to dramatize conflicts among agents and society. The next chapter turns to the range of autism in the dramas of popular culture as they portray and extend to everyday life. NARRATIVES IN THE AUTISM PARADIGM 87 Chapter 4: Popular Culture Popular culture in the United States has a long, shadowy romance with madness, and an obsession with the Other. Difference produces drama, mystery and thrills. Parallel to the growth of communications on the internet, networks of computing, and digital communication exchange is the portrayal of difference in the media. Individualism has long been a theme in American media. 21st century plotlines emerge, putting before audiences a protagonist who appears at once socially awkward yet mentally interesting, with an ability to shed or ignore criticism and drive single-minded efforts to success. The lives, frustrations and triumphs of geniuses have inspired a number of interesting dramas, featuring the individual against convention. In contemporary cultural drama, autism functions as an inventional resource for characters, drama, and minds engaged. Writers and directors have it both ways. The qualities of autism provide an implicit script for the persona of a key character in a drama, who is not labeled with the condition; sometimes, the script presents a character who is negotiating an identified condition, autism, into dramatic episodes of action. Protagonists in these dramas encounter conflict, in part due to organic restrictions on access to the available means of communication. The genre cashes in variously on the tension between fictions and realities. Television Drama Autism in television takes many forms. Severe cases are frequently found as small roles, where autism is often the sole dimension to the character. Echolalia, sensitivity to stimuli, self- soothing behavior (“stimming”, rocking, odd gestures), avoidance of eye contact, rigid thought patterns and difficulty with change, violent or self-injurious behavior, severe communication difficulty or lack of speech altogether are some of the defining traits of such characters. Their purpose within the show is usually as a victim or a roadblock. They might have witnessed or NARRATIVES IN THE AUTISM PARADIGM 88 learned of some important piece of information that is effectively “locked” within their heads, and “breaking through” their autism is the key to resolving a situation. This is frequent in, but not limited to crime dramas. In sitcoms, on the other hand, ASD traits tend to be emphasized for comedic purposes—bizarre speech patterns, emotional miscuing, extreme linearity, hyperfocus, odd behavior, and narrow interests contrast with “normal” behavior in ways that are silly, perplexing, or absurd, opening new spaces for engagement. In the case of main or major characters, regardless of the genre, a mixture of both elements comes into play, usually leaning heavily toward the second. As the programs analyzed in this section will show, one of the defining characteristics for autistic characters on television hinges on whether they are officially diagnosed as such. For example, Dr. Robert (Bob) Melnikov in the show ReGenesis (L’Ecuyer, 2004) is explicitly diagnosed as having Asperger syndrome, and that fact is integrated into the storyline of the show as a whole. Drawing from both of the aforementioned dramatic constructs, his condition is occasionally a source of comic relief, but also taken seriously, and a staple of character development, whether he draws from it or works around it. In contrast, Gil Grissom, in CSI: Crime Scene Investigation (Fink & Lewis, 2000) is a character that displays some quirks and behaviors generally associated with autism spectrum disorder, but is at no point diagnosed as such in the show. While not exactly comic relief, his strange habits act as counterpoint to the seriousness of the crimes investigated, and serve to make the character unique and likeable. Somewhere between officially diagnosed and undiagnosed characters lies Sugar Motta from Glee (Falchuk, 2009), “I have self-diagnosed Aspergers so I can pretty much say whatever I want. I'm so much better than you. Sorry, Asperger's.” (Stoltz, 2011) Purely comic relief, her condition, or the loophole she finds in it, define the entirety of the character, adding “Sorry, NARRATIVES IN THE AUTISM PARADIGM 89 Asperger's” to the end of anything that may sound rude. Demanding a place on the Glee club despite her inability to sing and constant consideration for her self-diagnosed condition, the character is in itself a reflexive manifesto against accommodation for disabilities. Given this range, the analysis narrowed it down to some representative cases, avoiding extreme outliers such as Sugar Motta. The following analysis of (re)presentations of autism samples television dramas, using two shows to investigate the way(s) autism is portrayed, both explicitly and implicitly. One, Alphas (Penn & Karnow, 2011), features Gary Bell, as a character who is explicitly diagnosed as autistic. The second, Criminal Minds (Davis, 2005), prominently features Dr. Spencer Reid, a character with “word of God” diagnosis by the actor portraying him, who, at the time of writing, is nonetheless undiagnosed in the show itself. These two shows were chosen both for familiarity, and the contrast between the severity and range of symptoms each displays. Gary Bell displays unusually severe symptoms for a major character, making him a closer illustration of the first archetype mentioned above. Spencer Reid, despite not being a comical character, displays milder symptoms, skirting the line of detection and diagnosis, illustrating the second archetype. They are also close in age (20 and 23, respectively) and occupation, making evident the contrast between their development as people and the evolution of their condition. The two shows are contrasted, to an extent, with a third show: Scorpion (Santora, 2014), in which autism is replaced conversationally by “genius,” illuminating the degree to which the historico-social implications of the term “autism” mediate the presentation and perception of autistic traits in entertainment television. While the “genius” of Scorpion is not, himself, diagnosed or recognized as being on the spectrum, the show does include an autistic child, but while illustrative of the victim archetype in its construction, the show refuses to engage with NARRATIVES IN THE AUTISM PARADIGM 90 autism, reframing even the child's condition as genius as soon as an actual diagnosis is offered. As such, it serves merely as an illustration of the link between television representations and the abstract concepts of genius and savant behavior. The characters I analyze in the two programs are widely agreed to be on the spectrum and to display accurate spectrum behavior (blue_sunflowers, 2011; Watson & Bring, 2012; Wrong Planet, 2011). Each character is examined on his own and as part of the cast, as well as the show as a whole, with emphasis on where the character fits overall, and what the show says about autism—specific to the character and in general. What narratives are applied to produce the stories (plots, episodes, and characters), and how do those narratives connect, parallel, contradict or transmute each other between the stories onscreen and the information conveyed to the viewer(s)? The answer is complex, and it becomes even more so when contrasted with depictions of autism and mental illness in other entertainment media. Given the nature of the media in question—serial dramatic entertainment with ensemble casts and occupational/procedural structures—the autistic traits are generally taken (dealt with) as differences, whether they are ascribed to/described as so or not. Only during character arcs focusing on or emphasizing those special or peculiar traits are any explicit ascriptions deployed or invoked in any significant way; and in the case of main and major characters, the drama pushes stylistic limits to how ‘broken’ they are allowed to be. A close look at each show will illustrate such limits, both characters analyzed occasionally skirting the line between “quirky” and “broken” Alphas. Alphas. SyFy Network’s Alphas (Penn & Karnow, 2011) ran from 2011 to 2012, spanning two seasons and 24 episodes. Zak Penn and Mark Karnow are are credited as creators, with Producers Michael Karnow, Nick Copus, Julie Siege, Kevin Lafferty and Executive NARRATIVES IN THE AUTISM PARADIGM 91 Producers Ira Steven Behr, Zak Penn, Gail Berman, Lloyd Braun, Gene Stein and Robert Hewitt Wolfe. The series is a fairly standard crime show/procedural in design, revolving around a team of (mostly) extraordinary people who use their abilities to solve crimes and investigate strange occurrences. Much like the current Marvel universe, Alphas is set in what appears to be an expanding shared world in the SyFy network, with Alphas linked to two other SyFy shows: Eureka (Cosby & Paglia, 2006) and Warehouse 13 (Espenson & Mote, 2009). Alphas was canceled after its second season, and thus the story never came to a conclusion. Despite a successful premiere, it did not maintain its ratings and narrowly escaped being canceled after the first season. Critical reception was mixed as well, with a general consensus that the setting was less than wholly original, “a mini-me version of the X-Men … without the fancy costumes and big special-effects budget” (Hale, 2011). The approach to superpowers as being less absolute than usually depicted, framed closer to a disability than a gift, was noticed and remarked upon, but that too drew both positive and negative opinions: “Alphas presents [the characters] as a kind of special-needs class, a group of individuals with a neurological tweak that leaves them—in the favoured language of empowerment—differently abled” (Sutcliffe, 2011); “[the show] wanted to make a point of its characters’ essential ordinariness. That’s one way to engage an audience, but in the absence of strong writing or really distinctive performances, it can also be a route to inconsequentiality” (Hale, 2011). Alphas stars David Strathairn as Dr. Lee Rosen, who is the only ‘normal' human on the team. As a psychiatrist and neurologist, he specializes in not only identifying, but defining and naming their abilities, including the term “Alphas” itself. The group he leads is composed of five Alphas in the first season, and expands to six in the second. Gary Bell (Ryan Cartwright) is a young man whose power is “transduction,” or the ability to see electromagnetic wavelengths and NARRATIVES IN THE AUTISM PARADIGM 92 process information as fast as any computer, eventually expanding from purely technological signals to those of concrete objects such as forks and trees. Cameron Hicks (Warren Christie) has “hyperkinesis”, which gives him the ability to process and react to movement at a superhuman rate, allowing superhuman reflexes, reaction time, and accuracy with anything thrown, shot, or otherwise movable. Rachel Pirzad (Azita Ghanizada ) has “synesthesia” which, in direct counterpoint to the meaning of the word, allows her to focus her senses to levels akin to microscopes or parabolic microphones. This heightened sense comes at the expense of all others; rather than having mixed senses, when using her power, she essentially only has one at a time. Nina Theroux (Laura Mennell) has the ability to manipulate people by “pushing” them using “hyper induction” to override their free will. Bill Harken (Malik Yoba) can send his endocrine system into overdrive to give him the super strength, speed, endurance and durability of a person in the throes of a severe “fight or flight” experience; unfortunately, using his power also brings with it all of the physical stress and crashing a person under those circumstances would feel. Kat (Erin Way), who joins the group in the second season, has exceptional procedural memory, learning subjects and skills instantly and flawlessly executing anything she sees or does once; her mind is so highly biased toward procedural memory, however, that her declarative memory only lasts a month and she has to be continually reminded of who she is, who they are, and what’s happening. Drawing from procedural crime shows, they form a team working for the Department of Defense to investigate crimes. Using their powers, they track down other Alphas, most of whom, they realize, are working for a competing (criminal) group called Red Flag, which uses the language of “neurodiversity” to justify their occasionally violent and extremist actions. The science fiction and procedural aspects are joined by a fair bit of drama exploring the characters, NARRATIVES IN THE AUTISM PARADIGM 93 their powers, consequent or adjacent weaknesses, and daily struggles, drawing from both their banal humanity, and their outlandish superpowers to paint a contrasted picture—that could in some way also be seen as a wounded narrative, entirely tainted but not wholly defined by the difference that makes the team special. This is reflected in the tag line for the show: “Super. But Human.” In some ways, the makeup of the show is fairly diverse. Their abilities span a neat spectrum from passive to active: Gary and Kat have purely passive powers, requiring only accommodation and direction in their use. Cameron and Rachel have semi-passive powers, needing training to sustain, focus, and (in Rachel’s case) suppress their abilities when necessary. Nina and Bill both have purely active powers, which require them to be able to judge when and how to use them, and what the consequences may be. Thinking along other lines, both Kat and Rachel’s powers can be read as disabling, with Kat’s continual memory loss and Rachel’s paralysis and pain when she loses control in the slightest. Gary, the focus of this analysis, is autistic, and it is hinted that his condition—the only one with a formal diagnosis—is either a consequence of his powers, or to an extent the cause for his powers. He is however not the only one negatively affected by his abilities. Nina is addicted to her power and has the same issues with control (harm, danger, recklessness) as any other addict. Bill has similar issues with control, as his power takes a heavy toll on his body which he refuses to admit to (despite taking heart medication and promising his wife he’ll slow down), and eventually joining a ‘fight club’ of a sort, which is where he meets Kat. Racially, the show follows the conventions of the genre, with a mostly white cast (including the primary ‘bad guys’), but Rachel, whose family is Afghani and Bill, who is black (along with the main lower-level antagonist from another department) more than fill the ‘diversity’ quotient. NARRATIVES IN THE AUTISM PARADIGM 94 The show revolves entirely about the cast's difference, and the difficulties that difference causes. Neurologically empowered but also impaired, Alphas are second-class citizens because of their (dis)ability, even in their official investigative role, where they see themselves relegated to a run-down office and lacking funding. The societal oppression only grows through the show, ending the first season with a plan to round up and imprison all alphas, blurring the lines of the original dichotomy of the 'good' alphas investigating 'evil' alphas, into something closer to (neurotypical) society as a whole versus alphas in general. The second season shows the flip side of this with the rise of a charismatic extremist(s) leader whose alpha-rights views turn out to rest on anti-'neurotypical' violence, a struggle framed (by him) as that of oppressed minorities rebelling against the genocidal majority and their corrupt institution(s). This analysis explores Alphas as a whole, and more specifically, the ways in which Gary Bell and his autism drive and are (re-)presented on the show. His eye-catching powers and odd behavior make him the most prominently featured, and most visible character in Alphas. Gary Bell Gary Bell. Gary Bell displays clear symptoms of classic autism, and those traits are both marked as and understood to be the cause of much of his abnormal behavior. At 20, he is the youngest main character, both within and across the shows engaged here. When Alphas begins, Gary is still under the care of his mother, Sandra. While technically an adult, his behavior and dynamic with his mother is very much like that of a teenager. He has a strict routine and becomes significantly agitated when people (and to a lesser extent events) contrive to disrupt it. His mother organizes their lives to provide the order and structure that he needs, following his routine and specific needs/desires at every level, from the temperature of his water after he brushed his teeth to the placement and content of his breakfast. Like most children, however, he often chafes under her care—he wants to drive, while she wishes he would not, he wants NARRATIVES IN THE AUTISM PARADIGM 95 independence, she wants him safe, and so on. The dynamics are familiar to anyone with even passing acquaintance with entertainment media; however the details are rather distinctive: Gary’s autism is always a factor. His mother’s protectiveness merges with her needs as caretaker, and when speaking to anyone else, her concern is almost entirely phrased in terms of his Autism rather than his age. When she argues with his boss, Dr. Lee Rosen, leader of the Alphas group, she talks about the things that he needs and the many ways things can go wrong (Penn & Karnow, 2011). Dr. Rosen, on the other hand, uses a language of difference, likening it to Gary’s other point of singularity, that of his powers. Although his dismissal of Gary's mother's concerns is clearly more functional than philosophical in nature (he just wants Gary to come to work), he does his best to treat Gary's needs the same way he treats the quirks of every member of the team. His autism and allowed agency as a result (or lack thereof) is a central point of contention between Gary, his mother, and Dr. Rosen, as they debate whether, how, and to what extent he can participate in any given activity. The struggles around this factor are attributional as well as emotional/logical. His mother tends to see him as a child, and she emphasizes the impairing elements of his diagnosis. She highlights the things he needs/wants done for him, the things he can not/is not allowed to do (which is probably one of the reasons he keeps asking for the car keys), and the possibility that he may be harmed (which may or may not be explicitly linked to his autism—after all, no television mother wants to expose her child to that sort of danger). Those tensions are there throughout the show, though most prevalent during the beginning of the series. They come to a head in Episode 4 of Season 2, titled “When Push Comes to Shove” (Penn, Karnow, Madha, & Levy, 2012). Then, Gary decides that he wants to move out NARRATIVES IN THE AUTISM PARADIGM 96 of the house. He does so by moving into the office, and despite it being a far better choice than others he might take, he and his mother fight (briefly). Eventually, she gives in and makes the most of it, bringing him things he needs to manage his routine and live comfortably. His rebellious streak is not entirely due to his youth, nor is it entirely a result of an autistic failure to read social cues or follow social conventions. It is an aspect of his personality, recurrent over the series, and profoundly influential to his behavior and the course of events. It is difficult, then, to separate what is intended to be representative of autism and what is intended to be representative of his immaturity, to say nothing of those elements that were purely Gary, facets of his personality that have nothing to do with his age or position on the spectrum. Despite displaying all of the indicators of classic autism, including behavior that looks like self-soothing or stimulatory “stimming” (Grandin, 2011, para. 1). His most powerful motivations are about love, care, and protectiveness. Although he stands side by side with his team and is willing to risk his life for theirs as a matter of course, he shows extreme protectiveness toward those he sees as in need of help, particularly when it involves people acting in ways that violate his idea of caring/socially acceptable interpersonal behavior. One such example is that found in the Season 2 episode, “Life After Death” (Penn, Karnow, Tobin, & Tuchman, 2012), in which a woman gives a baby with Alpha traits to Gary. He takes a liking to the child, to the point of being broody, carrying it everywhere, and tending obsessively to its needs. When people claiming to be the child’s parents arrive, Gary barricades himself in a Image 1: Gary holding "Adam" (Penn & Karnow,2012). NARRATIVES IN THE AUTISM PARADIGM 97 conference room with the baby, yelling at the team that the so-called parents are not trustworthy. This turns out for the best, as they do indeed turn out to be assassins intent on killing the baby. Although Rosen eventually discovers that the child’s power is to form affective bonds with people and make them protect it, there is clear evidence that Gary’s distress is merely amplified rather than fabricated entirely. He is upset not merely that the child was abandoned/in distress, but also because in doing so, the parents broke what he understood to be the social contract, the duty of parents to love and care for their children. While that encounter lasted only an episode, a much more lasting arc takes place in the story of Anna. When Gary first meets her, in the episode “Rosetta” (Penn, Karnow, & Gaviola, 2011), Anna Levy appears nearly catatonic and incapable of communication. While the catatonia is quickly discarded, she displays no signs of communicating via speech or engaging in typical social behavior. Instead, she wanders around the room hitting things, rubbing textures, clattering objects, and generally making noise. The others quickly dismiss her as severely cognitively impaired and move on with the investigation that brought them to her in the first place. Gary stays with her, however, and is the first to understand that her bizarre actions are a form of communication rather than random motions or tantrums. He devises a translator, turning the sounds into English, and proceeds to form a friendship with her. Their shared bond is affected not only by mutual interest and affinity, but also by his recognition of and sympathy to the state of being different, wired in a way that made little sense to outsiders and complicates communication at a very basic level. He is indignant at the way she is treated, the way she became something of a nonentity when she was seen as nonverbal and her actions inexplicable. As it turns out, Anna’s distress was (partially) feigned, a way to throw off Rosen and his NARRATIVES IN THE AUTISM PARADIGM 98 team. Although she does indeed communicate nontraditionally and is physically impaired, she can interact more or less normally with people using a translator program and computer. Indeed, she is the leader of Red Flag, the group the team was after in the first place. Red Flag is a radical group espousing neurodiversity in a way reminiscent of both traditional rebel civil rights movements and so-called eco-terrorism. She does her best to convince him of her cause, arguing that he needs neither his mother nor Dr. Rosen to survive. Although he chooses to stay with his team, he also begins to assert his independence more directly, such as telling his mother in Episode 6 that he does not need her to hover/fret/interfere when she brings him a cup of water. Despite their disagreements, Anna and Red Flag remain important elements of Gary’s story. Over the course of the arc, he and Anna fall in love, and her inevitable 'fridging' (Simone, 1999) becomes a galvanizing force in his life. Gary’s power as a “transducer” is perhaps the most distinctive power on Alphas (Penn & Karnow, 2011). His ability to see electromagnetic signals allows him to passively use them (e.g. surfing the internet or picking up transmissions of various types) without the aid of technology. The ability manifests itself as a visual landscape visible only to him, screens, waves, and colors streaming by as he navigates the world. For some reason, whether from biology or choice, he controls the display manually, using his hands to flip through the channels and Image 2: "Inside" view of Gary using his powers (Penn & Karnow, 2012). NARRATIVES IN THE AUTISM PARADIGM 99 manipulate the incoming data as if displayed on a physical screen. From the outside, then, what one sees is a young man waving his hands in the air in a set of fixed motions, occasionally talking to himself, and reacting to things no one can see. This behavior would be suspect in anyone, no matter how neurotypical or otherwise normal/ healthy they were. As an Autistic character, it takes the (visual) place of stimming (repetitive self- soothing movements), providing some of the more extreme and recognizable traits in a context that nonetheless assures the audience that the character is not really as autistic as he seems (or at least that his autism lies elsewhere). As the most visually dramatic power on the show, it serves to draw attention to him, providing an almost expository touch by showing off his bizarre behavior. Gary’s alpha-stim moves are consistent, using a certain set of gestures to produce certain results. The images of his power, likewise, are (more or less) consistent in their display after the first episode or so, and his hand-gestures interact with it in a fairly consistent way. Everything else, then, is just twitchy stim-like behavior. None of the non-alpha-stimming behavior is stereotyped in the way that autistic stimming is; his most visible, (stereo)typical/classic autistic behavior is linked more to him using his power than to the more normal stimuli he encounters. Contrast this to Cassandra Cillian from The Librarians (Rogers, 2014), who has a similarly expressed power filmed in similar ways (‘inside’ Image 4: "Inside" shot of Cassandra using her powers (Rogers, 2014). Image 5: "Outside" shot of Cassandra using her powers (Rogers, 2014). NARRATIVES IN THE AUTISM PARADIGM 100 shots show the power in use, ‘outside’ shots show her making random gestures in the air), but whose gestures are largely meaningless and inconsistent, especially given the nature of her power—the equations and other information are just there, not being actively manipulated or interacted with. The series contains several moments where Gary’s autism is portrayed as not merely unproblematic, but actively helpful, protecting him from various attacks and stressors. His mental rigidity, for example, renders him immune to “pushing” - powers that induce micro- seizures in people’s brains to render them susceptible to mind control. A more significant example is that found in the Binghamton arc; backlash resulted in the creation of special facilities for dangerous Alphas, who were implanted with “pacifier” chips to keep them docile and powerless. When Gary was chipped, he shut down so completely that when he was freed it seemed like he rebooted, having not really been present during the ordeal (Penn & Karnow, 2011). Despite the obvious difficulties it frequently implies for the affected characters, Alphas holds true to its initial message that difference, even one as visible and disabling as Gary's autism, can be a positive force. Despite some similarities in settings, one would be hard-pressed to find such a positive outlook from the next object of analysis. Criminal Minds Criminal Minds. Alphas and Criminal Minds are both procedural shows with ensemble casts, relying on the specific expertise of the individualities on the team to solve crimes and apprehend dangerous people. Both teams work for the government, and despite being part of a larger entity (the Department of Defense in Alphas, the FBI for Criminal Minds), they tackle all issues within their teams without relying on any outside help, with very few exceptions. Organizationally and structurally similar, these shows however diverge fairly drastically in their NARRATIVES IN THE AUTISM PARADIGM 101 approaches. Alphas is a fantasy show, with superpowers, world-threatening underground networks and conspiracies, while Criminal Minds is decidedly normal. As a violent crime show, this normality, banality almost, is a driving force for its dramatic structure, a reminder that the depicted deviant killer could be living next door. Where Alphas presents a struggle between factions (Alphas, “evil” Alphas and the government), Criminal Minds offers a fight between society and individuals. As protectors of society, the FBI team is highly visible and respected, a fortiori for repeatedly saving the innocent victim from the depraved lunatic. Meanwhile, Alphas work in the shadows of secrecy and disregard. Particularly relevant to the topic of analysis however is the nature of difference in both universes. Even as they are mistreated, the difference defining Alphas, if it is not always a source of respect, at least inspires awe. Meanwhile, the most visible difference in Criminal Minds is the pathological urges of the endless stream of murderers, rapists, or torturers, and difference as a whole is seen at best as a liability, at worst as a clear and present danger. Created by Jeff Davis for Fox network, Criminal Minds (Davis, 2005) revolves around a department of the Federal Bureau of Investigation called the Behavioral Analysis Unit, or BAU. It has been and continues to be a very successful show, having run for 11 seasons since 2005 with no signs of stopping, while maintaining a respectable position in ratings and a consistent roster of stars in its major roles, most of whom have attained a measure of fame either before the show or because of it: Mandy Patinkin, Thomas Gibson, Lola Glaudini, Shemar Moore, Matthew Gray Gubler, A. J. Cook, Kirsten Vangsness, Paget Brewster, Joe Mantegna, Rachel Nichols, Jeanne Tripplehorn and Jennifer Love Hewitt. Despite this, critical reception has always been mixed, polarized between effusive praise NARRATIVES IN THE AUTISM PARADIGM 102 and stinging criticism. Some, such as the Wall Street Journal, praised the show for its characters and intelligence “the show's character and tone have more than average flair and spirit … Intelligence, as well as social and psychological data, come flying from all directions from characters on the team … seriously gratifying [in] its total absence of psychic-detective claptrap … [the show] may be a hit, and deservedly” (Rabinowitz, 2005), while others were decidedly less convinced, such as USA Today, describing it as a “patently phony "profiler" procedural, one of those shows that turns investigative work into hocus-pocus, mind-reading nonsense”, which “plays like a how-to guide for sexual predators”, and criticizing a formula for shows that “struggle to find new, ever more disgusting forms of abuse” (Bianco, 2005). The show certainly is frequently graphic and violent, showing gruesome murders and assaults, and squarely locating their origin in a mix of traumatic past and mental illness, tying the two in a short-hand approach to psychology that relies on a significant degree of oversimplification. A relatable, likeable cast makes up for the violence to an extent, and more care was put into describing the struggles of the main characters, be it with their work or personal lives, than are given the eponymous Criminal Minds. The BAU is an existing entity, part of the National Center for the Analysis of Violent Crime, whose purpose is to produce threat analysis and criminal profiles, as well as offer more general suggestions to local, state, federal or even international enforcement agencies that request assistance from them. Their expertise lies in “unusual or repetitive violent crimes, threats, terrorism, cyber crimes, white collar crimes, public corruption, and other matters” (Federal Bureau of Investigation, 2016). While the real BAU is split among units specialized in crimes against children, crimes against adults, cyber crime, and terrorism (FBI, 2016), the fictional BAU of Criminal Minds is a single unit, tackling all of the above, with a focus on serial NARRATIVES IN THE AUTISM PARADIGM 103 murders. Also unlike the BAU as described in the FBI's documentation, the cast of the show takes a much more “hands on” approach to cases, occasionally butting heads with local police, but almost always entirely in charge of the investigation. Briefings regarding the profile of the suspect (referred to as an “unsub”, or unknown subject) serve mostly as exposition for the reasoning of the team, rarely leading to local police identifying the culprit, and the ultimate arrest (or, frequently, shooting to defend a victim being threatened) of the criminal is almost inevitably done directly by the show's cast—as is, of course, expected from a storytelling standpoint, but demonstrates some creative distance taken from the real-life inspiration. As such a long-running show, cast members have come and gone, but the structure of the group has remained stable: the Unit Chief, involved in operations but principally in charge of interfacing with local authorities, usually the person bringing in cases and dispatching the rest of the cast on investigations, a Senior Supervisory Special Agent (SSA), offering experience and expertise, frequently presented as a main character, and a variable number of Supervisory Special Agents, specialized (in theory) in various fields. The show's core group consists of Unit Chief Senior SSA Aaron Hotchner (Thomas Gibson), Senior SSA David Rossi (Joe Mantega) in Gideon’s place, SSAs Derek Morgan (Shemar Moore) and Dr. Spencer Reid (Matthew Gray Gubler), Communications Liaison turned SSA Jennifer “J.J.” Jereau (A.J. Cook), Technical Analyst & Communications Liaison Penelope Garcia (Kirsten Vangsness). While the cast is repeatedly said to be comprised of complementing experts in multiple domains, however, the unit presents rather similarly to many other crime shows, with a Sherlock Holmes-like detective (the senior agent) piecing together the case as a puzzle, showing superhuman ability for analysis and deduction, helped by a crew of Dr. Watsons offering insight NARRATIVES IN THE AUTISM PARADIGM 104 (and the occasional breakthrough). The reason for the discrepancy is the character this analysis focuses on, agent Spencer Reid, genius and encyclopedia, who ultimately denies specific expertise from all other characters by claiming the roles for himself. The other agents, in comparison, seem to more closely resemble normal police officers: capable, smart, frequently pivotal in breaking cases, but ultimately at their best doing footwork, questioning witnesses, and chasing or shooting down suspects. Not unlike Alphas, though with an entirely different (one could argue, opposed) focus, Criminal Minds is a show premised entirely on the difference of its characters, criminal and crime-solving alike. The members at the BAU are trained to study, predict, and apprehend people whose deviant psyches drive them to commit (or in one particularly tragic episode, merely fantasize about) horrendous crimes. To do this, they must partly be able to put themselves in the shoes of the criminals they pursue, aligning their own thoughts and lives with the horror they have to touch and experience through the perspective of criminals and their victims. No matter the subject matter or situation, all deviations from the norm are immediately and explicitly framed negatively and read as something sinister or threatening, happening or waiting to happen. Team members are afforded a measure of leeway, either through friendly obliviousness (for example, Garcia’s exacting organization and the stress engendered when her space is disturbed, visible enough to remark on—and thus significant enough to set off warning flags in other contexts—are consistently overlooked, and the few times they are acknowledged they aren’t respected or analyzed), deep background knowledge (Hotch’s refusal to smile and limited range of affect are accounted for by his job and personal life), or deployment of the “quirky” and “eccentric” narratives (neither Gideon’s distant and erratic behavior nor Reid’s peculiarities can really be written off, not when they have identified/indicated others for so much NARRATIVES IN THE AUTISM PARADIGM 105 less), but even within that context, fairly rigid standards of conduct and appropriate thought patterns are in place. Elle, for instance, was abducted and (almost) raped, yet is fired in response to a “questionable shooting” in which she killed her assailant—not for the shooting itself (which was cleared in investigation), but because she does not display (or pretend to) the right amount of remorse for his death. Despite the host of good reasons for her to leave—not least because the PTSD is affecting her works—all of which come up in conversation, that, the lacks of ‘proper’ remorse was the reason cited and emphasized. [Morgan] Elle made her own choice. That's on her. [Gideon] <on the phone to Hotchner> She hasn't admitted anything? [Hotchner] No. [Gideon] Well, you're doing the right thing. [Hotchner] Yeah, I know that. [Gideon]: So I’ll see you in a few hours. [Hotchner] Ok. <hangs up> 42:40 [Elle] <to Hotchner, from the doorway to his office> Gideon? [Hotchner] Yeah. [Elle] Tell him I said good-bye. <places her gun and badge on his desk> 42:41 [Elle]: This is not an admission of guilt. [Hotchner] Right. [Elle] You know, when I first started this job, the sound of my phone ringing, a call from the bureau, I used to get so excited. The blood would race through my veins. And now, that same sound, it paralyzes me. I'm not the same person anymore. That night at Lee's, if I had to do it all over again, I wouldn't change a thing. NARRATIVES IN THE AUTISM PARADIGM 106 [Hotchner] Even though you killed someone. [Elle] <looks away and sighs> [Hotchner] I guess that's it then. [Elle] You know, when I first joined the team, I couldn't figure out why you never, ever smile. Now I think I'm actually gonna miss that. (Davis, 2005; Davis, Boyum, & Bushell, 2006) Outside the group, every behavior, every suspect, every piece of evidence is run through the most negative of narrative constructions. While one might argue that it is the point and purpose of their work as profilers to explore the world their targets live, it is made clear on multiple occasions that this process can backfire spectacularly, losing time at the least, endangering lives at worst. Therefore, the focus and attention lent to so many details of the behaviors and mental states of characters (protagonists, criminals, witnesses, and victims alike) makes all the more evident the omissions, the traits, and signs that are not directly addressed. For the purposes of this dissertation, I have chosen to look more closely at what is hand waved away as quirks and eccentricities, particularly in the case of Dr. Spencer Reid. Spencer Reid. Spencer Reid. While Gary’s diagnosis is evident to even the casual observer, it would be easy to dismiss Reid's quirks as a slight, almost adolescent awkwardness. Where Gary, at least during the first season, is entirely dependent on his mother, Reid is independent, his own mother locked up in a mental institution because of her schizophrenia, a condition that looms on his future much darker than his mild foray onto the autism spectrum. When Gary has a breakdown, it is nearly expected, and the situation, as well as its causes are seen as benign. When Reid breaks down, it is only due to massively traumatic events that would easily send an otherwise neurotypically presenting character into as deep a self-destructive spiral, and every member of NARRATIVES IN THE AUTISM PARADIGM 107 the team immediately understands the gravity of the situation. They both recover more or less completely, showing a resilience people would not necessarily associate with their condition. More than the severity of their symptoms, it is perhaps the sheer amount of time Reid is allowed to develop that sets him apart—one of the perks of a long running show. Dr. Spencer Reid begins his tenure on Criminal Minds (Davis, 2005) as a shy, eccentric genius with poor social skills and fashion sense, as well as a complete lack of combat ability or training. His appearance and deportment belie his status as an FBI agent, causing him to have to explain himself in nearly every new exchange. An IQ of 187 and three Ph.D’s allow him to be part of the elite team despite his young age. While the other characters may be easily sorted into roles typical of procedurals, Reid manifests a subtle, but persistent off-ness, slight glitches in his affect, an uncanny valley reflection of the standard team genius. The agent's character experiences major changes over the course of the series, perhaps moreso than any others. The initial strangeness softens quickly into a more relatable awkwardness, highlighted by and enacted within his bond with fellow teammate Derek Morgan, who takes a sort of fraternal position, alternately mocking him for his social ineptitude and teaching him to overcome it. In many ways, Morgan serves as a guide, providing detail and exposition of Reid’s social failures. Morgan is neither a parent or caretaker, but rather a peer who occupies an off-the cuff, informal and charitable corrective role. Reid’s otherness is strongly constructed and enacted in this manner—an expository short-hand signaling to the audience that the behavior is odd, and that it is intended to be a marked characteristic. The most pronounced evidence of this oddness is social awkwardness, a trait represented as a general inability to read and/or respond to social cues. This involves such behavior as babbling, returning conversations to topics long after they have moved on, overly literal NARRATIVES IN THE AUTISM PARADIGM 108 interpretations or responses, as well as directly expressed confusion about social expectations and communication. When the topic of autism and/or his (potential) position on the spectrum is raised, however, Reid is noticeably unresponsive or avoidant. Indeed, the show seems to go out of its way to bring up the possibility, and equally far out of its way to deny it. In the fifth episode of Season 1, for example, a villain explicitly mentions his “autistic leanings,” only to have that fact soundly ignored. That exchange is particularly odd, in fact, as the villain’s other observations are about events in or details of the other characters’ personal lives, but the only mention of Reid is in the context of autism. The issue then goes unremarked for several seasons, only to resurface in “Coda” (Davis, Hardy, & Dunkle, 2011) the obligatory Autism Episode in Season 6, where it is once again explicitly ignored and avoided. It is approached most directly in Season 8, “Through the Looking Glass” (Davis, Downs, & Watson, 2012) during the following exchange: [Reid] Braden certainly would be vulnerable. Unlike classic autism, language ability is intact in people with Asperger's. They appear to lack empathy and have trouble reading social cues. Albert Einstein supposedly had it, as do some well-known Silicon Valley types. [Alex] <from several seats away> Well, how about you? [Reid] <absently> What's that? A short time later: [Alex] You know, by the way, no offense earlier when I suggested you had Asperger's. [Reid] None taken. When did you do that? [Alex] And that's what I love about you. You're not overly sensitive like some people.I mean, think about how much time we'd save if everyone just got straight to the point. NARRATIVES IN THE AUTISM PARADIGM 109 [Reid] Yeah. Cut out all the handshakes and how-do-you-dos. (Davis et al., 2012) While it is tempting to read this as avoidance of the possibility of mental illness in a main character (particularly in this case, as it would bring them uncomfortably close to the persons they profiled), mental illness is actually a significant aspect of Reid’s character and backstory. His mother Lynn, played by Jane Lynch, has a moderate-severe case of schizophrenia. Between the genetic components of the disease and the aftermath of certain traumatic childhood events, the possibility of mental illness is an ever present concern. Indeed, an entire episode in Season 6, titled “With Friends Like These” (Davis, Foerster, & Barrois, 2011) is dedicated to his worries regarding the possibility of developing the disorder. This family history might explain to some extent why he avoids the subject of ASD. Schizophrenia is scary enough without contemplating a spectrum diagnosis and all its attendant social issues and stigma. It might also be an element of otherness; he has grown up with schizophrenia and can separate stigma from symptomology (though he is not unscarred by the reality), but ASDs have only recently been portrayed in this way, and his intellectual comprehension and responses may not reflect that. This is where the “word of God” comes in. Though it has been stated that Reid would not be diagnosed with a spectrum disorder (and, if it is anything like other shows, no diagnosis of anything will be forthcoming, no matter how the character’s actions and history might call for it), the actor who portrayed him, Matthew Gray Gubler, stated in an interview with About.com's Rachel Thomas (Gubler, 2014): “[Reid]'s an eccentric genius, with hints of schizophrenia and minor autism, Asperger's Syndrome. Reid is 24, 25 years old with three PH.D.'s and one can't usually achieve that without some form of autism” (para. 4). That is, his portrayal is explicitly designed to imply or invoke spectrum status. It is therefore not entirely unreasonable to conclude NARRATIVES IN THE AUTISM PARADIGM 110 that the elements of the character’s behavior and deportment which lend themselves to an interpretation of spectrum status, are intended to imply or affirm that reading. That is, to the degree one can look at Gubler’s character and go “that’s (probably) autism!” It may not be canonically true (it may, in fact, even be canonically untrue) that Reid is on the autism spectrum, but the behaviors that implied otherwise were meant to read that way—they are a collection of cues intended to convey the message that This Is Autism. As the series progresses, the character’s deportment and affect evolve, eventually arriving at the image of a competent field agent, confident and (hipster) fashionable, who just happens to also be a genius. The only major carryover from one state to the other is his diction—the rhythm and cadence of his speech, rapidfire questioning, elaboration, and slight abruptness. Therefore, it is no wonder that Gubler's depiction of Reid received some approval even among autistic self- advocates, recognizing themselves in part in the character. The character's maturation and development while maintaining the autistic (or aspie) identity and behavior illustrates what advocacy has been clamoring for: a marked spectrum character that can be identified by his autism, while not wholly defined by it, and able to function within society. The show's refusal to officially establish the character as autistic does him a disservice however, as a (mostly) positive representation loses its impact if it can be handwaved away as “not really autistic.” In the show's defense, mass media as a whole seems to have issues grasping the concept of autism, not unlike medicine or academia. As a result, approximations of the condition are based on better- understood notions of mental difference with which they have more experience. Autism as a Sum of its Parts Another way to expose representations of difference is to look at parallel representations of genius, social awkwardness, and personal resourcefulness in other genres that feature self- NARRATIVES IN THE AUTISM PARADIGM 111 challenged protagonists, particularly science fiction and fantasy; stylistically, the more different a character, the more attention is drawn to spectacular and powerful abilities, in equally suspenseful and involving settings. The accompanying trait for autism and autism-related conditions is generally genius, frequently in the form of savant behavior. However, another important facet of autistic representation is an emphasis on the distant and emotionally stunted nature of the character. As a result, depictions of autistic characters fall somewhere between traditional depictions of geniuses, and that of psychopaths. Psychopathy Psychopathy. In Psychopathy and the Cinema, Leistedt and Linkowski (2013) follow (the evolution of) portrayals of psychopathy over the course of 95 years (1915-2010). They find a distinct relationship between scientific understanding, (sensational) news or current events, and portrayals of psychopathy and psychopaths in media (specifically movies, as that was their field of study and data source). As information and events make their way into the popular consciousness, representations of psychopathy move with them (as have many mental illnesses, disabilities, and other marginalized traits, identities or conditions), shaping and being shaped by the sociocultural and political landscape in which they exist. For example, the 1970s saw a shift away from “the more sensationalistic aspects of the past … to avoid association with slasher films,” opting instead for villains “who often represented the ‘banality of evil,’ mirroring the cultural events of [the time]” (Leistedt & Linkowski, 2013, p. 171). Interestingly, when the authors describe “a well-designed prototypical idiopathic/primary psychopath” (Anton Chigurh in “No Country for Old Men” [Coen & Coen, 2007]), they provide a list of “arguments and detailed information about his behavior” (Leistedt & Linkowski, 2013, p. 172), which led to their diagnosis. Identifying features include: Active, primary, idiopathic psychopathy: incapacity for love, absence of shame or NARRATIVES IN THE AUTISM PARADIGM 112 remorse, lack of psychological insight, inability to learn from past experience, cold- blooded attitude, ruthlessness, total determination and lack of empathy [as well as the way the character seems] affectly invulnerable and resistant to any form of emotion or humanity. (Leistedt & Linkowski, 2013, p. 172) Although the contexts are different in almost every way, this roster of character features could easily have been used to describe an Autistic person or character today. Popular explanations, (such as the show scripts being analyzed in this chapter) typically cite the appearance of, inability to, or difficulty with demonstrating and/or understanding emotion, single-mindedness, and disregarding problems with “normal” behavior. For instance, in an episode of the television show In Plain Sight (Maples, Lerner, & Lieberman, 2010), the Marshals must protect a witness with Asperger Syndrome. The condition is described in the following exchange: Marshall Mann: Asperger's has a number of symptoms of which you should be aware. Mary Shannon: [sarcastically] Oh, yippee. Marshall-pedia. Marshall Mann: Off the chart recall. Total inability to relate emotionally on any level. Mary Shannon: So, my dream witness. Marshall Mann: Also, it's difficult for some people with Asperger's to lie or even grasp the concept of lying. Stan McQueen: Which is why this is her third relocation in six months. Mary Shannon: Aces. (Maples, Lerner, & Lieberman, 2010) In dramas where the autistic person is not an object of sympathy (victim, innocent bystander, eyewitness, family member), these traits are described/portrayed far more closely to Leistedt and Linkowki's (2013) description above. NARRATIVES IN THE AUTISM PARADIGM 113 The main difference between (mildly) psychopathic representation(s) and non- sympathetic (severe) autistic representation is that autistic violence is generally directed inward (banging against walls, flipping out), and/or reactive (punching someone for being too close, kicking when moved), while psychopathic violence is both outwardly oriented and (almost always) active and agentic. Indeed, even the construction of the sentences (using the same or similar wording) generally reflects that matter of agency; psychopaths, for all their condition compelled them, are read as capable of and actively planning whatever harm they inflict, while autistic people are seen as incapable of active violence, no matter how significant their harmful actions might be. Genius Genius. Genius in its modern use is a conflation of two seemingly opposite notions. Originally, the latin word genius (“to bring into being”) refers to the divine nature of a person, family or place. On the other hand, ingenium (“innate talent”, from which not only ingenuity, but also engineering, are derived) refers to skill and inventivity. The concept of genius seems to combine both in an interesting way. The romantic movement of the 18th century draws mostly from the first meaning in its use of the term. Musical or artistic passion and creativity are the hallmark of a genius that is entirely free of objective assessment. Genius itself is opposed to any form of measuring, and attempting to quantify it is an affront to its purity. In direct opposition to the rationalism of the time, genius finds its root in the essence of being. The specific experiences of people, places, concepts are what make up their genius, and the truth of genius is self-evident through the inability of one outside of it to grasp it. Freed from rationality and concepts of value, genius is seen as the raw energy of the pursuit of a truth that is its own. While still used in current parlance, the word genius used in that sense generally demands a prefix, such as a musical or NARRATIVES IN THE AUTISM PARADIGM 114 artistic genius. On the other hand, for Francis Galton, the 19th century anthropologist and statistician, genius finds its origins in the second latin root word and is squarely associated with intellect. “Hereditary Genius” (Galton, 1869) frames genius as a Darwinian product of evolution. Galton describes inherited abilities and skill within families. Later in his career, he went on to suggest objective measurement of intelligence, and created tests which paved the way for French psychologist Alfred Binet to develop what we now know as the intelligence quotient (IQ) (Jensen, 2002). In this context, almost diametrically opposed to the romantic notion, genius is a descriptor of skill and excellence, the proof of genius being in its application, in what it creates and the tangible quality derived from the demonstration of skill. Genius is in mastery, and the value it creates and by which it is measured is the advancement of humankind. Colloquially, popular understanding of genius draws mostly from this second approach, but the “divine” notion of the latin genius still pervades how genius is presented. A genius, thus, is at once both a mystical creature far above the fray, one gifted with superhuman qualities in every domain unless specific flaws are mentioned, and one whose rich inner world provides a vision that transcends reality. A genius is not only smarter and more able, but inherently right, even when the claim being investigated is purely an opinion. Their superior character, inherited from the simple mention of genius, carries with it the assumption that even if their reasoning or actions are flawed or demonstrably wrong, there must be a missing factor that they alone took into account, forcing not just a burden of proof on opposition, but casting doubt on the proof itself if provided—or throwing away opposition altogether as inapplicable. Genius is not bound by rationality or proof, rather creating its own truth by its very existence, all the while gifted with absolute logic and flawless thinking. A genius is a visionary, seeing things not NARRATIVES IN THE AUTISM PARADIGM 115 just as they are but as they will or should be, bypassing the need to comply with current facts or explain the reasoning behind their actions. This almost automatically implies an otherness and eccentricity. By their superior ability to think, their vision and understanding of the world, they place themselves outside of it, unbound by its rules. They see further ahead, deeper into, and faster through each problem or question than a normal mind can cope with, forcing a disconnect that makes them sound incoherent or even absurd to the casual observer. Their minds skip the steps necessary for understanding, gaining absoluteness in their argument by never allowing skepticism to properly catch up to dismantle the reasoning. Only their own mind could offer a counterpoint to their argument. This genius otherness is particularly salient to the study of autism because of how it ties in with Theory of Mind. The autistic deficiency in Theory of Mind, so frequently repeated as a fundamental factor of autism, implies difficulty realizing the importance of a continuous explanation: A logical conclusion they arrived at might well be assumed to be self-evident to the autistic mind, and thus not worth mentioning. Logical leaps form gaps in the autistic discourse. Autistic people do not however, as a rule, benefit from the suspension of doubt that geniuses are offered. Where a genius' argument is legitimized by those skipped steps as a demonstration of superior intellect, the autistic person's argument is dismissed on the assumption that the missing steps are faulty. Ironically, in a way, the visible difference that is autism creates a feedback loop in the listener, lifting their own Theory of Mind, rendering them unable to gasp that the autistic person does, indeed, have a mind of her or his own, able to understand things they might not. Thankfully, there is a convenient label for autistic (and other) people displaying such incomprehensible ability. NARRATIVES IN THE AUTISM PARADIGM 116 Savant Savant. Savant syndrome is a rare, but extraordinary, condition in which persons with serious mental disabilities, including autistic disorder, have some ‘island of genius’ which stands in marked, incongruous contrast to overall handicap. As many as one in 10 persons with autistic disorder have such remarkable abilities in varying degrees, although savant syndrome occurs in other developmental disabilities or in other types of central nervous system injury or disease as well. (Treffert, 2009) The “island of genius” can be artistic talent, arithmetic ability, or a spectacular memory. The estimate of one in ten has been contested however: “it is now more realistically held that at most one or two in 200 of those within the autistic spectrum disorder can justifiably be regarded as having a genuine talent, though a reliable frequency estimate does not exist as yet” (Hermelin, 2001). Whether the number is closer to one or ten percent, unfortunately for the vast majority, savant behavior is frequently the only way in which brilliance is ascribed to autistic people. Savant behavior is essentially a backward genius, yet frequently the closest autistic people are allowed to get to genius. While a genius can display autistic tendencies, they are a genius, not autistic, and the behaviors read as autistic are merely a price they pay for being so exceptional. They just appear autistic to ordinary humans unable to comprehend brilliance. Autistic people however can be seen as savant, solving problems or knowing things that they should be unable to. Where a genius is assumed to get from the problem to its solution through an untold, but logical, rational or visionary thought process, the savant gets to the solution through a glitch, no steps are assumed to be taken in the savant mind, the answer simply appears to them magically. They are not able or capable, but rather the passive vessel of an unexplainable phenomenon. A savant is a black box, a machine taking an input and offering an output, but with NARRATIVES IN THE AUTISM PARADIGM 117 nothing to observe inside, whereas a genius takes the same input and transforms it into the same output through (what is assumed to be) an observable mechanism which just happens to be impossible for anyone else to comprehend. Coding autism as genius Coding autism as genius. In Scorpion (Santora, 2014), genius is defined not only by incredibly high IQ, but also by many symptoms commonly associated with autism (e.g. aversion to touch, social awkwardness, and savant skills). The show features a group of such geniuses, solving various problems from terrorist threats to technological disasters. At the time of writing, the show is on its second season, despite lukewarm popular reception and mixed reviews. Belying its ambitious premise, the series deploys mostly as a standard procedural show, bringing little new to the table, and as such inspired some negative reviews: “characters are pretty one- dimensional, that one dimension being their social awkwardness” (Hyman, 2014); “ludicrous technobabble … It’s a show about geniuses that gets stupider and stupider until it explodes.” (Stuever, 2014) The drama is premised on the life of Walter O’Brien (who is also an executive producer for the series), and it includes many verifiable elements of his life. His claim to genius (as described) is authentic, and he really does run an organization named Scorpion, which offers consultations on a wide variety of subjects, from terrorism to corporate redesign and more. From the beginning, it leverages these facts to appeal directly to the viewer to accept its tales as true (or at least significantly similar on important dimensions). The authority of representations by entertainment media, such as books, movies, and TV shows, is a somewhat tricky issue. On the surface, it seems an easy task to determine whether a work is fictional and the content, context, and behavior of characters are to be taken with a grain of salt. In practice, however, separating fact from fiction can be a bit of a challenge. Fisher’s NARRATIVES IN THE AUTISM PARADIGM 118 narrative categories would have us look to narrative coherence and fidelity, an unfolding of truth in the context of unusual sense making attributions to characters. Scorpion (Santora, 2014) also relies on an element of borrowed authority: the “real life origins.” Media claiming to be based on, inspired by, or representing real people, places, or things gain both the authority of authenticity and the freedom (and necessity) of artistic license. There is no way to tell fact from fiction without prior knowledge, and even in the case of prior knowledge, it is entirely possible for details to change or readings to shift. “My name is Walter O’Brien. I have the fourth highest IQ ever recorded, 197. Einstein’s was 160. When I was eleven the FBI arrested me for hacking NASA to get their blueprints for my bedroom wall. Now I run a team of geniuses tackling worldwide threats only we can solve.” (Santora, 2014). Given the seemingly fantastic nature of the things he has accomplished, there is an allure of authenticity that pushes the borders of the believable. For example, uploading data from a laptop to a plane by ethernet cable while driving (riding) in a convertible pushed to match its speed is cool, but strains the imagination, and gives the description of genius a bit less authority as a result; if the result of genius, in that context, is absurd, then the definition is probably absurd as well (Santora, 2014). Genius, in this case, is manifested in strange behavior, rendered explicable only by other geniuses, specifically by Walter, the main character and stereotypical genius, who is arrogant, socially awkward, blunt to the point of rudeness, obsessively into whatever project he is working on, and smart enough that one puts up with him anyway just to see what he will do next. This leads, of course, to the tagline of the show: “You translate the world for us, and we'll help you understand your son” (Santora, 2014). The defining concept of genius is a characteristic portrayed as both affirming and NARRATIVES IN THE AUTISM PARADIGM 119 problematic. Despite the characters’ insinuated unique quirks, nowhere is autism mentioned; the closest they come is Paige's admonishment of Walter early on to leave her son alone because he is “challenged” (Santora, 2014). Their life is portrayed, at first, much like standard autism ads; Paige’s son does not hug her, shies away from contact in general, does not speak or make eye contact. This parallels the very image of a commercial talking about how one’s son or daughter will never love them. Paige does not react the way the commercial narrative would have her react. Instead of grief and horror, confusion, or helplessness, she takes the time to get to know her son; she might not be a genius, able to fully understand his behavior into something suitably cool and audience-friendly, but she is certain of his love, respectful of his needs, and loves him unconditionally, no matter how strange his behavior might be. Furthermore, the characters on the show are awkward—almost cartoonishly so—but each has a specific area of expertise: Toby’s our behaviorist. Sylvester is a walking calculator. Happy, a mechanical prodigy. Agent Cabe Gallow is our government handler. And Paige? Well, Paige is not like us. She’s normal, and translates the world for us, while we help her understand her genius son. Together, we are Scorpion. (Santora, 2014) Paige's interactions with her son (and the group at large) serve to counteract some of the silliness of the show, wearing away at the insulating bulwark of absurdity. As the “normal” one (the only “normal” person with whom the cast regularly interacts), she is coded as the arbiter of appropriate behavior and a model of (neuro-)typical thought. She is the one who points out the absurdity of their plans, contextualizes things so that they understand what others are thinking or why a system works or does not work the way it does. She could, in some ways, be considered the voice of the audience (at least, those who identify as more-or-less “normal,” and/or enjoy picking things apart for inconsistency). NARRATIVES IN THE AUTISM PARADIGM 120 Therefore, the list of characteristics and behaviors that are and are not “normal” hardly needs analysis to bring out. Likewise, by exclusion, the behavior that is not “normal” must be “genius.” This is a type of social algebra that takes a lot of plain undesirable behavior, such as rudeness, talking over, condescension, and attaches it squarely to “genius,” furthering the stereotype(s) of the unpleasant genius loner. The genius both looks down on and feel detached from others, making social connection difficult or undesirable. The implication then is that free rein must be given to “geniuses” to do and be as many of those behaviors/stereotypes because they simply cannot help it; it is a part of “genius” as much as intellect and ability. Not only that, it seems that however disruptive or rude geniuses are, they are also generally purer of intent and more capable of action, once the parameters for said (inter)action are laid out. Geniuses are often bullied and/or misunderstood (in this case, by adults rather than children), and their uneven distribution of skills makes them, in some ways, incapable of independent life. [Walter]: I thought we were paying the bills after the Credit Nationale job? [Sylvester]: I was. I worked for three days on this great loss algorithm for credit risk. [Walter]: <resigned, cutting him off before he can continue to babble> You got lost in the numbers and you forgot to pay the electric bill. [Happy]: And the water bill and our rent. And the payment was all in cash, which got misplaced. [Sylvester]: It's somewhere close. [Walter]: When's the last time you ate? [Sylvester]: You mean, like, food? (Santora, 2014) This format—explicit coding of “normal” as good and deviant as “Genius”—subverts the NARRATIVES IN THE AUTISM PARADIGM 121 insulating factor of suspension of disbelief; hence, everything has already been sorted out for the viewer, leaving audiences free to indulge in the outrageous without having to parse the message intended. Already constructed as geniuses, these characters are freed from the burden of doubt that falls onto autistic people, the deviance is simply part of their genius, and should not be given more thought. Even if they display many ASD-like behaviors and quirks, they are, first and foremost, geniuses, and in its construction, the concept frees them from normal social expectations, and, as a result, immunizes them from a spectrum diagnosis that would cast doubt on their intellect and abilities. Genius finds itself turned on its head when ascribed to an autistic character. Autism itself Autism itself. Autism is causal, not comorbid; if one is recognized as autistic, and to a greater extent yet if diagnosed, then the presence of genius is merely a consequence of autism. Autism itself carries the seeds of genius and brilliance in its very construction. Recoded (if not necessarily explicitly) as savant behavior, flashes of insight or mental gymnastics take on a supernatural hue, and autism itself, rather than the character, solved the problem or produced the result; the autistic character becomes simply a vessel and conduit. Perhaps this is why producers, directors, and writers often refuse formal diagnoses for characters displaying ASD-like traits; if the character is diagnosed as being on the spectrum, their quirks, struggles, and accomplishments, their entire story becomes about and because of their spectrum status. They go from being characters with a set of quirks, strange behavior or eccentricities to autistic characters, who might or might not have backstories, goals, or plot-relevant traits. This kind of identity-first construction might seem like the reifying recognition desired by advocates, but it is quite the opposite; rather than an autistic person, whose autism is a simple but fundamental aspect of the character’s personhood, such as gender, height, or sexual NARRATIVES IN THE AUTISM PARADIGM 122 orientation, the character becomes autism (no matter the details, severity, or relevance), which just happened to have a body attached to it and a plot to follow. The autism and personhood are divorced, just as much as they are in person-first language. This is where the major issue of entertainment media comes to the forefront again: by giving a formal diagnosis in that manner, and framing it as if autism is the sole impetus for the character's thoughts, behavior or role, the message becomes painfully clear: This, whatever it might be, is autism. These traits are how one recognizes autism. As an afterthought, in very small print, it mentions that This Is Autism… in this particular show. Like other marginalized people (and the characters supposed to represent them, no matter how offensive or inaccurate that representation might be), the character stand as representative and exemplar of their entire (perceived) identity group: Sometimes, I am the first black woman that someone has interacted with, dated or developed a friendship with. At times, I am that "one" that surprised you. And there are times where it doesn't matter who or what I am, because you knew who I was the instant you saw me. (Gray, 2012, para. 2) As discussed above, this representative authority is compounded by a common attribution error: Not only does this character represent their entire identity group; as a single (or isolated) data point, it is easy to confuse or forget the context in which one acquired a particular piece of information and attribute it to more authoritative, non-fictional sources. As rampant an “epidemic” as some clamor autism is, for many, these media representations are the first and only image that autism conjures. For others however, autism is a major part of their everyday life, be it because they are autistic themselves, or are responsible for (or otherwise related to) an autistic person. Far from a dramatic, but distant plot point for an episode that is forgotten once NARRATIVES IN THE AUTISM PARADIGM 123 the next airs and tackles a different social issue, autism is to them an omnipresent element of their media consumption and participation. This is the realm of associations, groups and loose gatherings offering advice, resources, aid and assistance, but also advocacy, representation, debate and protest. From an outsider's point of view, these places of communicative activism may appear powerless and frequently ignored—until, for a day, social media calls for wearing a colored ribbon—but for its participants, they are often a locale of emancipation, social activity and engagement. Chapter 5: Activism and Advocacy Until recently, the primary mode of activism for disabled or handicapped people —such as it was—was the charity model. The people being “helped” were painted as poor, pitiful wretches who could only be saved by the selfless gifts of strangers. They were (and still are) frequently infantilized using the imagery of childhood, or if no children were to be found, the semblance of childlike simplicity and helplessness (Stevenson et al., 2011). One of the defining characteristic of such “activism” was that it was spearheaded and managed by caretakers, families, people “burdened” with the charge of the disabled or handicapped person, whose status as victims of both the disability and the disabled person themselves were frequently put forward to incite sympathy and donations. As self-advocacy efforts became more viable, alternate viewpoints have become more visible as well. The slogan “Nothing about us, without us” crystallized the issue at the heart of the charity versus advocacy model debate. The phrase finds its roots in general political discourse; but in English, it became strongly tied with the disability rights movements. The origin of the slogan in that context is unclear, with the first attributed mention going to South African activists Michael Masutha and William Rowland, though they themselves had heard it from an East European disability activist NARRATIVES IN THE AUTISM PARADIGM 124 at a conference (as cited by Charlton, 1998). It represents the demand for the disabled people themselves to have a say (or ideally, be in charge) of what is done to help them. Of the things discussed, the one that caused the most conflict was the assertion that autism did not necessarily need a cure, or even treatment. It was not just that autistic self- advocates did not want to be cured. Rather, they did not need to be cured because there was nothing wrong with them in the first place. While obviously not a universal consensus, the argument was shocking enough, and forceful enough, to cause a considerable stir. The idea of seeing autism as a difference, one that might not need fixing, dates back to the late 1980s and early 1990s. It made waves, then, and now truly has gained traction. The idea has made headway in media and the general public in the 2000s (Harmon, 2004). The notion has congregated in recent years around organizations such as the Autism Self-Advocacy Network (founded in 2006), which has been spreading the message with more success and recognition than its predecessors. Communication activism in academia Communication activism in academia. One visible absence in the ongoing discussion about charity, advocacy and self-advocacy is communication science. While there is ample academic material supporting the charity model, with countless works exploring effective persuasion methods and fundraising techniques, a notable lack has long been observed when it comes to communicative advancements in the fields of social progress and justice of the kind that ASAN and other self-advocacy groups pursue. Established structures of support and action within a capitalist charity framework still find too little resistance in academic fields of communication for which such entities have traditionally been a partner, in the form of public relations and advertising efforts. Recent attempts at reframing and reorienting communication activism into a force for social justice and radical social change are worth mentioning, but they NARRATIVES IN THE AUTISM PARADIGM 125 are still far from the dominant trend in an academic field whose strengths lie in objectives-based persuasion. Lawrence R. Frey is one such scholar that has explored the potentialities for social justice inherent in communication research. This is how he sums up the dichotomy between charity and advocacy efforts: The commitment to identification with others, sometimes expressed as "solidarity," should not be confused with friendliness or charity. That is, social justice is not a matter of "us" being hospitable and welcoming "them" into "our" community; it is an insistence that a community of integrity cannot exist if some are excluded. Social justice is not done when "we" in our largess donate some of our disposable resources to "them"; it is done when we act on our recognition that something is amiss in a society of abundance if some of us are well off while others are destitute. Social justice is not done when "we" give our time and energy to help "them" escape from oppression; it is done when we realize that none of us is truly free while some of us are oppressed. (Frey, Pearce, Pollock, Artz, & Murphy, 1996) Beside (and beyond) the charity model, his and others' research explore the direction and impact of communication research and activism, demonstrating the potentialities the field possesses for both social transformation and maintenance of the status quo. As Dwight Conquergood argues, it is entirely possible that in doing such research, one must make the choice of sustaining or opposing established structures of power and dominance. The choice is no longer between pure and applied research. Instead, we must choose between research that is “engaged” or “complicit.” By engaged I mean a clear-eyed, self- critical awareness that research does not proceed in epistemological purity or moral innocence: There is no immaculate perception. Engaged individuals take responsibility NARRATIVES IN THE AUTISM PARADIGM 126 for how the knowledge they produce is used instead of hiding behind pretenses and protestations of innocence … As engaged intellectuals we understand that we are entangled within world systems of oppression and exploitation. Our choice is to stand alongside or against domination, but not outside, above, or beyond it. (as cited in Frey, 1998) Actors and outlook Actors and outlook. The organizations involved in the discussion about autism today can be separated into two groups, with some, but relatively little overlap. First are the research, charity, or awareness based organizations, chief among which by its visibility and funding is Autism Speaks. There are larger funders for autism-related research, but that money comes from groups such as the National Institute of Health (NIH) and the Simons Institute, which are dedicated to scientific and health related work in general rather than autism in particular, and remain, by design, neutral rather than implicating themselves into the active debates. While the attention paid to Autism Speaks in this dissertation (and elsewhere) might seem disproportional compared to other awareness, research or charity organizations, it is in fact only reflective of its importance, dwarfing most other such associations. Founded in 2005, it had, by the end of its first year, already merged with two of the most prominent organizations in the field, the Autism Coalition for Research and Education (ACRE) and the National Alliance for Autism Research (NAAR) (both organizations focused on biomedical research and awareness), raised “an unprecedented $40 million through donations and fundraising events”, and signed on celebrity supporters such as Jerry Seinfeld and Paul Simon (Autism Speaks, 2007). Today, it is reasonable to speak of a behemoth, with a reported revenue of $68.4 million in 2014 (Autism Speaks, 2015), countless celebrity supporters, and events held all across the nation. When it comes to funding, the next largest non-profit organization is probably the Autism NARRATIVES IN THE AUTISM PARADIGM 127 Society of America (ASA), founded in 1965 by Ruth C. Sullivan, with O. Ivar Lovaas and Bernard Rimland, with a comparatively measly revenue of $2.7 million in 2014 (Autism Society of America, 2015). A few more organizations have a revenue of more than $1 million, such as Talk About Curing Autism (TACA) with $1.58 million, or the Autism Research Institute (ARI) with $1.31 million (Autism Research Institute, 2015; Talk About Curing Autism, 2015). Even if they were to all merge together, it is highly unlikely that other non-profits could rival Autism Speaks when it comes to funding, or influence. Nor would they necessarily care to, as the goals and missions of many are fairly similar to those of Autism Speaks: “funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families” (Autism Speaks, 2016a). There are however notable exceptions, as well as significant distinctions, be it in focus, priority, or goals entirely. A first rift was caused by Autism Speaks' support of the theory linking vaccines to autism. No mainstream autism non-profit organization supports the notion anymore, but both ARI and AS voiced their interest, or support, for the theory—support they since retracted. In 2009, Alison Tepper Singer, a senior executive of AS, left the organization in disagreement, and went on to form her own non-profit, the Autism Science Foundation (ASF). Beyond that rift, the lines of demarcations lie mostly in focus. Some organizations are focused almost entirely on research on causes, such as ARI or the Autism Science Foundation. Others prioritize providing support, assistance and information to families, such as TACA or Autism Now. The ASA is a bit of an outlier in this category, arguably fitting in the next section, or at least somewhere in-between. Their Guiding Principles actually offer an introduction to what NARRATIVES IN THE AUTISM PARADIGM 128 differentiates advocacy groups from the mentioned awareness, charity and research organizations: • We provide services without regard to a person’s age, race, religion, disability, gender, sexual orientation, income level or level of need on the autism spectrum • We strongly encourage and welcome families, professionals and individuals living with autism with opportunities to participate in our governance, on our committees, and as staff members • We partner with others to advance the well-being of all living with autism • We promote individual choice and self-determination of individuals living with autism, aided by parental and guardian advocacy • We recognize a person living with autism can and should be able to maximize his/her quality of life and oppose any denial of their opportunities • We oppose any discrimination and harm directed towards individuals living with autism and their families • We are transparent, responsible and accountable to those we serve, those who support us, and the general community in our stewardship of funds • We assure the confidentiality of our services—and adhere to required confidentiality laws, and regulations pertaining to such services • We strive to ensure our programs, services, and decisions are outcome-driven • We maintain independence from political partisanship and commercial interests • We respect the work of our affiliates and do not engage in actions that enhance one organization at the expense of others NARRATIVES IN THE AUTISM PARADIGM 129 • We support data and evidence-based analyses of options informed by broad knowledge of educational, research, clinical, government, business and program services experience • We support an options policy and provide information on all options so individuals can exercise freedom of choice in their decision-making (Autism Society of America, 2016) As a shorthand, focus on the autistic people, their rights, and their representation are what differentiates groups that fall into the advocacy category. The autism advocacy movement is made up of many such groups, taking the form of proper associations, loose groupings of people congregating into blogs and forums, or yet looser associations of blogs themselves under various labels. As such, the structure of the movement is hard to delineate into specific approaches, missions or philosophies. There are some differences in focus, though the core tenets are the aforementioned “Nothing about us, without us,” and the belief that autism does not need a cure. Another commonality is the much lower revenue than associations from the previous category. In 1992, the Autism Network International (ANI) was co-founded by Jim Sinclair, Donna Williams, and Cathy Grant. Sinclair is credited as the first person to advance the argument that autism was not a condition in need of cure (Solomon, 2008). ANI identifies explicitly as an organization run by and for autistic people (Autism Network International, 2012). As of 2012, their philosophy was listed as: • The best advocates for autistic people are autistic people themselves. • Autistic lives are meaningful and worthwhile lives. Supports for autistic people should be aimed at helping them to compensate, navigate, and function in the world, not at changing them into non-autistic people or isolating NARRATIVES IN THE AUTISM PARADIGM 130 them from the world. • Autistic people of all ages and all levels of ability and skill are entitled to adequate and appropriate support services. • Autistic people have characteristically autistic styles of relating to others, which should be respected and appreciated rather than modified to make them "fit in." • In addition to promoting self-advocacy for autistic adults who are able to participate independently, ANI also works to improve the lives of autistic people who, whether because they are too young, or because they do not have adequate communication skills, are not able to advocate for themselves. (Autism Network International, 2012) The next major organization to spring up in the United States is the Autistic Self Advocacy Network, which uses the slogan “Nothing about us, without us”, and localizes itself squarely as an expansion of the global disability rights movement into autism. They argue that “the goal of autism advocacy should be a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens” (Autistic Self Advocacy Network, 2016). Other groups have sprung up with slightly different foci, such as the Autism Women's Network, which is “committed to recognizing and celebrating diversity and the many intersectional experiences of Autistic women” (Autism Women’s Network, 2016). AWN has a variety of projects and initiatives, such as their “Committee on Autism & Ethnicity”, which “studies the impact of race and culture on Autistic lives [and searches for] ways to support individuals and families in multiple marginalized populations,” and “DIVERgent: when disability & feminism collide,” which “[explores] the impact of sexism and ableism in disabled and nondisabled communities” (Autism Women's Network, 2016). NARRATIVES IN THE AUTISM PARADIGM 131 Much of self-advocacy happens outside of such properly defined organizations, however. Instead, loose coalitions or communities are sites for engagement and activism. One influential group is the Thinking Person's Guide to Autism (TPGA), centered on a blog named for a book of the same title. It presents itself as “the resource [they] wish [they]'d had when autism first became part of [their] lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals” (Thinking Person’s Guide to Autism, 2016). Another platform for advocacy is Wrong Planet, a “web community designed for individuals (and parents / professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences” (Wrong Planet, 2016) which facilitates the sharing of information and hosts debates which generate and strengthen individual and group advocacy efforts. This diversity of modes and methods of engagement is not conducive to a coherent movement, but broad trends are made visible through their engagement. If mass media made autism public by turning it into an entertaining condition using a romantic, or at least dramatic, approach to even the most debilitating symptoms, advocacy groups as a response labor to provide a more realistic, practical (in their grass root efforts to improve the situation on the ground), and balanced representation of autism not just as a condition, but also as a difference and culture. Autism Speaks' “I am Autism” campaign, while technically belonging in the sphere of advocacy, takes a step back toward dramatization, but sheds the romantic or attractive aspects of media narratives, instead fostering debate and dissension through an alarmist, simplified, and if one is to believe the most vocal reactions, thoroughly offensive depiction of autism through a parent centric, cure-focused message. NARRATIVES IN THE AUTISM PARADIGM 132 “I am Autism” The video “I am Autism” (Cuarón & Mann, 2009) and the events surrounding its release and reception serve as a perfect illustration of the dynamics between Autism Speaks and autistic (self-)advocates, and more generally between the autism-as-disease/disability and the autism-as- difference approaches to the phenomenon. In this text, it serves as a representative anecdote, a synecdoche illustrating the complex web of interactions within the autism paradigm. The film itself is analyzed and expanded on to paint a picture of autism as seen and lived by Autism Speaks, its promoters, and many Autism Parents and caregivers. The response(s) from the autistic community serve as a counterpoint, illustrating the problematic nature of the message. Film analysis Film Analysis. “I am Autism” was shown at Autism Speaks' “World Focus on Autism” in 2009. The panel is now on its eighth iteration (as of September, 2015), and is arguably Autism Speaks' most important and visible event, drawing dignitaries and first spouses from many countries, and hosting discussions on the “state of autism” (Autism Speaks, 2016b). The short film, lasting just under four minutes, was made by Autism Parents Alfonso Cuarón and Billy Mann (2009)—a well-known and respected director, and a very successful artist and music producer, respectively. It draws from video clips sent by families with autistic children, following a call for submissions on the Autism Speaks website. As per the video submission requirements, the film follows a simple three part structure: first, the autistic child alone; then, the same child standing (or sitting) with their family; finally, interactions between the child and family (smiling, hugging, etc.). In the first part, the lone children are shown accompanied by a threatening voice-over by Autism, then, as the families enter the scene, their voices respond to Autism, mounting into a chorus as the smiles and interactions are shown. The transcript for the film is in the appendix. NARRATIVES IN THE AUTISM PARADIGM 133 Part 1: Autism speaking Part 1: Autism speaking. The movie opens on a child, alone, looking around as if lost, and soon enough, the voice of Autism comments, “I am Autism.” The association between “Autism” and the child is made immediately; this child, despite displaying no symptoms, despite looking just like any child would if told to stand around alone while parents filmed him, is now labeled, marked, and perhaps even entirely replaced by Autism itself. Throughout the first part, that is all one sees: children (and perhaps one adult) looking around, either bored, distracted, or somewhat confused, but decidedly autistic, not because of how they act or anything the audience might be told about them or their lives (nothing is said of their lives or experiences at all, in fact), but because that is now their role. The behaviors on screen, despite showing no indication that anything is wrong with the children in question (some might be in distress or throwing a tantrum, but essentially, those are things children might do regardless of whether they are autistic), are now to be read as ominous, signs that not only something is very wrong with those children indeed (and potentially, all children), those are not even the children anymore, they are Autism. Autism has a deep, threatening voice befitting a classic movie villain. The cadence and emotive qualities of its speech recalls both classic horror dialogue and contemporary action posturing, with the macho territoriality of the latter occasionally bubbling through the subtly off monotone of the former. Autism's calm, almost gentle tones belie the horror of its words, only to burst forth with uncharacteristically pointed aggression. A low pitched tone is heard throughout its speech, accentuated by occasional squeaky, higher pitched noises reminiscent of a haunted house. The sounds of children crying, and some wailing, join in. An eerie cacophony underlines the voice. The contents of its speech are no less scary sounding. Powerful imagery is invoked, such as the notion of robbing people of their children—one of the main points of contention with NARRATIVES IN THE AUTISM PARADIGM 134 advocacy groups. The implications go beyond the fairly common dehumanization of children- turned-Autism (where the children, now autism itself, are not themselves, or even human anymore), going as far as to deny the existence of the children themselves. In another controversial aspect, the threats are directed solely at parents, despite the unspeakable torture it wants to inflict to children: now wholly trapped, replaced by Autism, they are no longer there to talk to, and, stripped of their voices and language, wouldn't understand if they were. The message itself leaves some verification to be desired, as at the very least, the claims of failed marriages and how fast autism works (a strange concept if, as current scientific consensus would have it, it is a condition present at birth) are contradicted (or unsupported) by evidence. (Freedman, Kalb, Zablotsky, & Stuart, 2011; Park, 2010) The message is at times heavy handed and obvious, at others convoluted and bumbling, and sometimes, both at once. Seemingly nonsensical statements, such as “I speak your language fluently,” (Cuarón & Mann, 2009; a really strange threat, given that Autism spoke English throughout the film) needs to be read through a double prism of context where the film was shown (a UN-adjacent forum involving, or at least welcoming non-English speaking nations), and visual association (the Parthenon was shown on screen when the words were spoken, a symbol of universalism to counterbalance the almost purely English focus of Autism Speaks, and appeal to a global audience). Somewhat similarly, the focus on Autism's absence of moral compass might seem odd when the film describes it as decidedly evil (if one ascribes to such a concept at least), doing harm for its own amusement or benefit: “I will bankrupt you for my own self-gain … I relish their desperation … I derive great pleasure out of your loneliness” (Cuarón & Mann, 2009). In this case, however, the insistence on an absence of notions of good and evil or morality brings to NARRATIVES IN THE AUTISM PARADIGM 135 mind a more insidious concept: the widespread notion that with autism comes an absence of empathy and morality, easily one of the most damaging stereotypes, occasionally leading families to consider their autistic child possessed or cursed. The general impression from the first part of the film, however, is clear. Autism is coming for everyone, and ignoring its threat is akin to inviting it in. Part 2: parents (and caregivers) respond Part 2: parents (and caregivers) respond. A gentle electric guitar tone, children's giggling, and laughter: the tone is drastically different right from the start. The speech itself has multiple voices this time, sometimes overlapping, sometimes in chorus, hinting at diversity (including in the choice of speakers, both male and female with varying tones, cadences, vocal qualities, but not accents or languages, even when listing countries). This sense of unity and hope is strengthened, but also occasionally betrayed, by the images: children being joined by their families and hugged, kissed, but also crowded in a way that, for some, is clearly distressing. Quite a few of them are clearly much less comfortable than when they were on their own, some even in a visible state of panic as they are grabbed and forced into unrequested contact and affection. The message, meanwhile, is steadfast: “We will spend every waking hour trying to weaken you … we will not be intimidated by you … You are alone. We are a community of warriors … Autism, if you are not scared, you should be.” (Cuarón & Mann, 2009) A very war- like message in response to Autism's threats, and solely directed at Autism itself—not donors, families, or autistic people themselves. “I am a father, a mother, a grandparent, a brother, a sister … this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists” (Cuarón & Mann, 2009) just as the first part is targeted at people around, but not including, autistic people themselves, so does the response come from families, caregivers, NARRATIVES IN THE AUTISM PARADIGM 136 people involved with autistic people and autism. There is a clear, if tacit, agreement with Autism's claim that autistic people lost their voice and language. They, not autistic people, will fight Autism and “… knock … down [the wall their child lives behind] with [their] bare hands.” (Cuarón & Mann, 2009) The “stolen” and “trapped” metaphors could be seen as another illustration of the “changeling” story, “in which a human child is stolen in the night by evil beings (such as trolls or fairies) and replaced with a non-human child (Chew, 2007). Despite the evident antagonistic nature of the speeches, due to their nature as a response to Autism itself, a message of love is repeated multiple times; but, this seemingly innocuous message is tainted by some of the visuals and some of the associated rhetoric. The implications of love as the only language that matters are more worrisome when the backdrop is that of a child whose body language is essentially yelling “please stop hugging me.” Similarly, breaking down the wall behind which an autistic child lives is a powerful image, but also a terrifying one for the child who put it up as a defense mechanism. Hopeful sounding, but ultimately problematic statements abound: “You think because some of our children cannot speak, we cannot hear them?” (Cuarón & Mann, 2009) for instance, carries the image of a “voice of the voiceless”. However, the reality is that not all autistic people are unable to speak, and the power dynamics of the interpreter frequently puts the parent's, researcher's, or caregiver's analysis and opinion above the stated wants or needs of autistic people themselves. Again, the images do not necessarily fit the intended message, and when the voices say, for instance, “We will not be intimidated by [Autism],” (Cuarón & Mann, 2009) and a startled child on screen was kissed on the forehead without warning, the meaning seems closer to: “We will not respect our children's space if we want affection.” Ultimately, that seems to be the response given to Autism's threats: “You came for our NARRATIVES IN THE AUTISM PARADIGM 137 children, now we are coming for you.” They will soldier through with their family, by breaking walls and by not being intimidated (even to the point of disregarding the discomfort of their children), to speak the language of love through hugs and affection. Additionally, from there, they will march on to conquer Autism itself, using any means necessary. Mentioning research and technology in the same breath as prayer and voodoo, simultaneously gives the impression of desperation, as well as that of an “anything goes” approach reminiscent of the madman theory. Not unlike the first part, the second part seems intent on drawing a line between the community and the autistic person. Not only are they never mentioned, the film itself sums it up best: “When you came for my child, you forgot: you came for me.” (Cuarón & Mann, 2009) The parents/caregivers “have a voice,” while autistic people do not; even if they could speak, they could not speak for themselves, at least, not through this community. The terse, short, bold statements of the transcript take on features of a manifesto, a statement of belief, an assertion of self. In making itself present in uncanny ways, the "I," the self, is there in spite of and against the denials of invisibility, uncertainty, and misstarts. "I," "we," and "you" constitute a performative array for the self in relation to others. Problematic nature Problematic Nature. Because of the varying quality and resolution of the source material submitted, but perhaps also for a feeling of authenticity, the film looks amateurish, with simple effects (fade in, fade out, cut) and no retouching of the pictures (not even to remove/blur timestamps or adjust aspect ratio for consistency). More surprisingly, despite not being family- submitted material, the audio is also frequently over-saturated, slightly distorted, and even more startlingly, one of the microphones throughout the second part has an audible static whistle. It is difficult to imagine that a Grammy Award-nominated songwriter and record producer simply did not notice, and it seems fair to assume that the resulting amateurish effect is in fact intentional. NARRATIVES IN THE AUTISM PARADIGM 138 Perhaps this is to give the impression of authenticity, a self-published film by the families from whose home videos it was compiled. This would not be a problem were it not for the fact that after submitting their videos, the families had no say on the resulting film, nor its message, and given the very different tone and appearance of the page asking for submissions, it seems safe to say that most probably did not expect their family videos to be used the way they were. The main points of contention, however, lie elsewhere. The complete exclusion of autistic people from the equation, both as people able to talk for themselves and people worth listening to in general, as well as the purely caregiver-centric angle of the message, is a problem within the “I am Autism” (Cuarón & Mann, 2009) video, just like it is within Autism Speaks as an organization. The infantilizing rhetoric is omnipresent—quoting all such references would result in copying most of the transcript—and in fact no mention is even made of the existence of autistic adults. Furthermore, the personification of Autism, as a replacement for autistic people as an interlocutor, forces a disconnect between their bodies, their being, visible on the screen, and their minds, locked away, stolen by the villain that is Autism, and while they are essentially talked to, but not with, they are further insulted as a passive object for both sides of the argument: a burden for parents, a puppet for Autism. The rhetoric used by both sides of the conversation is also worrisome for the tacit agreement between the two factions arguing: Autism needs to be eradicated, its walls broken down, its threats responded to twofold, while Autism itself acknowledged a cure as the only weapon for parents and families. Validated even by the villain, the proposed solution has a bitter aftertaste of eugenics. Reactions Reactions. The campaign sparked an avalanche of negative reactions from a wide range of people, autistic and not, organizations and individuals. These reactions took the form of blog NARRATIVES IN THE AUTISM PARADIGM 139 posts, open letters, campaigns, protests, forum discussions, video responses, etc. They focused on many different facets of the film: its making, its message, its use. They were addressed to the world at large, specific individuals associated with the campaign (or not), Autism Speaks, organizations working with or helping fund Autism Speaks, or simply responses or messages to others within the community. They pointed a finger at Autism Speaks, at one or both of the people who made the movie, at autism parents as a group, at the autism parent as a concept (see description of the autism parent in the “Community” section). They simply decried the underlying mentality and beliefs illustrated by (and in) the film, or called others to action. Positive responses to the film were scarce and rarely verbose. Frequently, they were responses to the reactions themselves, pointing out exaggerations, attempts at cooling off tempers, or non-committal support for anything that sparks dialogue—which the “I am Autism” (Cuarón & Mann, 2009) campaign certainly did: Think about the opportunity to open up a debate this video has at least created. It may not paint any pritty [sic] pictures, or even show any real objectivity there; but, however, where is the harm in discusing [sic] autism or bringing it into further theatres of debate, by whatever means thought appropriate? (Jake, 2010) This is not to say Autism Speaks received no support, nor were positive reactions entirely absent. A blog post by “Autism Dad” sums up many of the arguments advanced for support of Autism Speaks (in this case, the subject is specifically Suzanne Wright, grandmother of an autistic child and co-founder of Autism Speaks): [A]n impassioned grandmother who has watched her low functioning grandson struggle for years and her daughter shed quite a few tears along the way … she was presenting the worst case scenario of autism … it was meant to get the attention of the politicians and NARRATIVES IN THE AUTISM PARADIGM 140 the general public, to make them aware of the struggles of some (lots?) of autism households. … To get what you want you need to paint a gloomy picture and say how dire the situation is … Yes it painted a gloomy picture. Yes if I had autism and could understand what she wrote I would probably be upset...until somebody explained to me that this is how you get things done in this crazy country of ours. (Autism-daddy, 2013) The underlying message is understandable, but through it, a familiar pattern is visible. Autism Speaks speaks for the autistic enough. If a child can understand the terrible things they are saying about them, that means the video was not about them to begin with. That said, the responses are overwhelmingly in agreement. Some activists share the pragmatic approach of the author, determining the worth of Autism Speaks and its message through a cost-benefit approach: "Without a big name, celebrity- endorsed, big money organization the fight would not have gotten as far as it did, and my little guy (non-verbal, low functioning) would not be getting the five-days a week therapy he is now getting" (Heather, 2013); "She wants dollars for autism. Does it matter what she says to do that." (Anonymous, 2013b); "People need to look at her comments with logic and not emotion" (Curious Bug, 2013). Also a reflection on the views of the author, some locate their support for Autism Speaks in the imagery of a “worst case” of autism, both as more efficient for spreading the message and garnering funding and support, and as more authentic and representative of the families who need help the most: My child needs help and they are fighting to get me that help. I am so glad for the people with autism who can speak and express their disgust for her and Autism Speaks, but my child doesn't have that ability and these people are fighting against him receiving that NARRATIVES IN THE AUTISM PARADIGM 141 help. It's infuriating! (Dannene, 2013) the only way we got anyone to listen to us was to put a REAL face on autism, and accurately portray it's [sic] biggest challenges (Pollard, 2013) The 'purity' of low-functioning autism, its authenticity as 'true' autism, only hinted at by the author, is much more visible in some of the responses as well: "Any one that criticizes her is Welcome [sic] to come and spend a week with me and see what life is like when one of your children has Classic Autism" (Crampton, 2013); "It doesn't matter if you can speak or not, if they can write a blog, then they are high functioning. Sheesh!" (Anonymous, 2014). Rarely disputed, but not usually mentioned within explicitly positive comments, the cure- first approach of Autism Speaks (2016) had vocal supporters as well: This whole high functioning vs low functioning this I think is bs [sic]. I believe my son would be just as amazing and awesome without autism because he is awesome and amazing. The autism part can hit the road as far as I'm concerned! (Unknown, 2013); If we don;t [sic] want to cure Autism, why to we do therapies and spend hours on ABA and getting the best school services and making sure everyone is aware and included? If we just want to accept autism and be done then why try and advocate? If one day my child loses his diagnosis, I will be happy..if not I will also be happy, but it doesn't mean we don;t [sic] try for better for our kids..all our kids. (Anonymous, 2013a) Mainstream media coverage was not so emotionally charged. Its attention mostly came as a result of the reactions rather than the campaign itself, and ranged from simple reports of the criticism (Vo, 2010; Wallis, 2009) to rather firm agreement with the film's detractors, generally in the form of editorials (Biever, 2009; Silberman, 2015; Willingham, 2013). Compared to the sheer volume of blog and forum reactions, however, media coverage was rather lacking and NARRATIVES IN THE AUTISM PARADIGM 142 seemed limited to anglophone readers (primarily identifying or presenting themselves as in or from the USA). Self-advocacy organizations responded more visibly, with online pushback and offline demonstrations. The Autism Self-Advocacy Network (ASAN), in what was far from their first altercation with Autism Speaks, published a call to action, mentioning a “new low” for Autism Speaks in response to the “horrific statements” contained within the film (Autistic Self Advocacy Network, 2009). They also encouraged members and sympathizers to help stop Bruce Springsteen's association with Autism Speaks and contact his publicist, even providing contact information. However, the most outspoken criticism came from blogs and forums. These contributions can not be ranked on any meaningful scale, so instead they will be presented along the broad lines of their origins, targets, or content. Many wrote open letters to various contributors, board members, or (sometimes loose) associates of Autism Speaks. In “An Open Letter to Suzanne Wright of Autism Speaks,” blogger Corina Becker (2009) summed up what was a fairly widespread reaction: The latest video of your organization Autism Speaks, “I am Autism”, completely disgusts me. It present [sic] an inaccurate presentation of autism, as if it were some disease, a blight or a growth that can be torn out of a person. Autism is a part of who I am. By presenting autism in the way that you have, not only have you demonized autism, but you have demonized and victimized autistic people. You show no compassion or empathy for autistic people in the way that you have represented us, or rather, the way in which you lack to represent us. (para. 2) The “open letter” format saw widespread use during this campaign, demanding withdrawal of financial support for or association with Autism Speaks, cancellation of specific NARRATIVES IN THE AUTISM PARADIGM 143 events, even resignation of affiliated personnel. One such example was Alan Griswold's (2009a) “Open Letter to Geraldine Dawson” (Autism Speaks' Chief Science Officer at the time), calling the campaign “hostile and offensive to autistic individuals” and “calling on [her] to reconsider [her] employment with Autism Speaks” (para. 2). The rhetoric of the letter escalated, culminating with: Your association with this video, as well as your association with the organization that stands behind it, calls into question more than just your reputation as a scientist. It calls into question your very humanity. (Griswold, 2009a, para. 4) Another, “An Open Letter to Laurent Mottron” (Griswold, 2009b) by the same blogger, was different in tone, no doubt due to the more autism-friendly attitude of the receiver, as well as his position as a researcher funded by, but not directly employed, by Autism Speaks. It urged: Openly denounce the “I am Autism” video. Use your influence as a respected autism scientist to urge your colleagues to do the same. And if your efforts to reform the deeds of Autism Speaks do not succeed, I call on you to reconsider the wisdom of continuing to accept funding from such a repulsive organization. (Griswold, 2009b, para. 2) Both letters saw a response, the former accompanied by an announcement of the removal of the video from Autism Speaks' site (Griswold, 2009d), the latter agreeing with the damaging nature of the video, stating “I have the same profound repulsion for this video as all of you have.” It goes on however to stress the importance of Autism Speaks’ supporting his research: “long-term effect of this research is more important than the ethical issue raised by the way AS gets this money” (Griswold, 2009c, para. 1). Other reactions were directed at the filmmakers, particularly Alfonso Cuarón and Mann. Cuarón’s success as a filmmaker made him the more visible face of the duo, and elicited some NARRATIVES IN THE AUTISM PARADIGM 144 rather extreme responses. One of the more moderate examples is a petition demanding an apology: I love your feature films. Harry Potter 3 may be the best in the series, Children of Men was a masterpiece. So why did your short film “I am Autism” have to be so offensive, so dehumanizing, so focused on scare tactics? (Baron, 2012) On a lighter tone, though more definitive in her judgment, Rita Skeeter (2009) wrote a satirical piece set in the world of Harry Potter, casting an “underpants curse” on both Cuarón and Susanne Wright: Whatever their reasoning or lack thereof might have been, their Bigots-R-Us store-brand underpants are now on display for the whole world to see. Nobody who watches that video will ever again think of Cuarón as anything but a third-rate propagandist. (Skeeter, 2009, para. 2) In a slightly more aggressive response, his character is attacked in a post by blogger Autisticbfh (abfh, 2009b), on a post castigating him for his signing of a petition to free Roman Polanski: That's so disgusting, it just boggles the mind. Cuarón seems to believe that autistic people should be kept locked away forever, as indicated by the statement in the video that it is "virtually impossible" for autistics to go out in public, but at the same time Cuarón evidently thinks it would be just fine to turn a confessed child rapist loose to prey on other vulnerable little girls. (abfh, 2009b, para. 2) The post concluded, “The despicable attitudes toward children shown by Alfonso Cuarón and Autism Speaks have no place in our community” (abfh, 2009b). Many responses were targeted to Autism Speaks as a whole rather than individual contributors or associates as well. Frequently accusatory, these response came from autistic NARRATIVES IN THE AUTISM PARADIGM 145 people themselves, but also families and parents. For example, in a post called “Autism is a color,” Susan Etlinger (2009) wrote: But I am happy. My son and husband are happy. So I reject you, Autism Speaks, for mongering fear and hatred with this hideous new video. For forgetting that people with autism deserve respect, and for demonizing them even as you seek to raise funds to support and treat them. (Etlinger, 2009) Some of the criticism aimed at Autism Speaks was more specific. An article pointed to the original call for video footage, saying it “deceived parents” and calling it a “bait and switch” (abfh, 2009a, para. 2); it quoted the YouTube comment of a parent: "I do have 2 autistic children and a husband on the spectrum. When they first suggested a video I was eager to send them one till they outlined what they wanted. My children and husband don't want or need to be CURED what they do want is people to treat them the same as anyone else, stop the bullying and put more staff in schools to support them…" BarrysDaughter (as cited in abfh, 2009a) Others bemoaned the large forum offered by the United Nations to Autism Speaks and the film: “United Nations is concerned with peace and security, human rights, and humanitarian affairs. There is nothing about the above message that speaks to my soul about human equality and human rights” (Ashkenazy, 2009). Also focusing on human rights, another assesses that “the ‘I am Autism’ video directly contravenes [the UN Convention on the Rights of People with Disabilities]” (Annear, 2009, para. 2). The specifics of the film itself elicited some response as well. The cinematography and message reminded at least one blogger of the film “The Birth of a Nation”: [“The Birth of a Nation”] glorifies the KKK, showing them as rescuers. Most NARRATIVES IN THE AUTISM PARADIGM 146 disturbingly to me, it takes the attitude that integration is simply impossible. The movie's African Americans are subhumans who cannot be integrated into society. I see a similar attitude in the “I am Autism” video from Autism Speaks that many people were offended by when it was released this week. (Bryce, 2009, para. 2) Another pointed out the disparity between the audio and video, calling the words “offensive” but the video “most ineffective”: [T]he pictures subverted the negative words. The narration told us that "I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain." while we are shown a movie of a lot of presumably autistic people (mostly boys) who are generally sitting around or standing around in public places not bothering anyone (Marlene, 2009, para. 2) The film also inspired some parodies, in the form of both text and video responses, frequently sarcastic or simply turning the message back around. From “I am Socks” (Wady, 2009) to a couple versions of “I am Autism Speaks” (MisterZonkerHarris, 2009; NonSpeakingNotSilent, 2015). As Wady explains in the film's description for I am Socks, “You can make a short film like this listing the bad points about every religion, race, nationality, physical and mental condition, state of being, you name it. You can also do the complete opposite.” (Wady, 2009) Removal and backpedaling Removal and backpedaling. Fairly quickly in face of the backlash, Autism Speaks, through their Chief Science Officer, Geraldine Dawson, announced the removal of the video: Thank you very much for sending me your letter and telling me about your perspective and feelings regarding the “I am Autism” video. I understand and respect your perspective and I am truly sorry that the film offended you. The video was not intended NARRATIVES IN THE AUTISM PARADIGM 147 to reflect Autism Speaks broader viewpoint or attitude toward persons with autism spectrum disorder. Rather, it was created by two fathers of children with autism—Billy Mann, a Grammy-nominated songwriter, music producer and. It is based on a personal poem written by Mr. Mann. It is an intensely personal expression by these two fathers. It was their hope that the piece would inspire other voices and artists in the autism community. It has greatly offended some people, however, and we have removed it from our website. Again, thank you for writing to me and sharing your thoughts. You can rest assured that I will continue to advocate for a respectful and compassionate attitude and support for persons with autism spectrum disorder. (as cited in Griswold, 2009d, paras. 1–2) This response, a victory in some ways, was not entirely seen as such. In a response to publishing the above letter, Griswold (2009e) described the answer as inadequate: Autism Speaks' strategy in the wake of the “I am Autism” controversy appears to be a disavowal of responsibility for the video, placing the obligation solely on Mr. Mann and Mr. Cuarón. That strategy is disingenuous at best. It was Autism Speaks, through a direct appeal from Suzanne Wright, that solicited family footage for the “I am Autism” video, and it was Autism Speaks that presented the video with great fanfare for the United Nations, and it was Autism Speaks that displayed the video prominently on its website and made it the centerpiece of a $100 million fund-raising campaign. It was not Mr. Mann and Mr. Cuarón who foisted this offensive and exploitative video upon the world— it was Autism Speaks. (Griswold, 2009e, para. 1) No further official comment about the video or its removal was issued by Autism Speaks, NARRATIVES IN THE AUTISM PARADIGM 148 and to this day, because of this and other campaigns, the rift between autistic people (and self- advocates) and Autism Speaks has yet to be bridged, despite their addition of autistic board members in December 7, 2015. While seen by most as a step in the right direction, one they clamored for over many years, the Autism Self-Advocacy Network (ASAN, 2015) summed up the community's general opinion after that decision: The appointment of two Autistic people to their board does not rectify this damage, nor does it signal an appreciation of the damage done, or a recognition of a need to fundamentally transform organizational priorities moving forward. Unless and until Autism Speaks makes significant changes to their practices and policies of fighting against the existence of autistic people, these appointments to the board are superficial changes. Barring such changes, Autism Speaks will continue to fail to be an organization that can create real, positive change for the Autistic community. (Autistic Self Advocacy Network, 2015, para. 3) While the long-clamored-for appointment of autistic board members within Autism Speaks is undoubtedly a step toward proper representation for autistic people, the real obstacle toward the “nothing about us, without us” hopes of ASAN and other self-advocacy groups is not the makeup of Autism Speaks' board, but Autism Speaks' importance itself. As earlier mentioned, Autism Speaks' position as not just the most prominent, but frequently the only visible autism-related organization in media and the news, as well as its very name, ignore that it is not representing autism, or speaking for autism, but a representative body for its members, donors, supporters, very few of which are autistic themselves. It is then logical to ask: For whom does Autism Speaks speak? NARRATIVES IN THE AUTISM PARADIGM 149 Thus Spake Autism Speaks Prominently, parents (and caregivers) are the main demographic represented by Autism Speaks, and as a result, it is common to see a certain glorification of the position of “parent of a child with autism” (a predilection for person-first language is also part of Autism Speaks' rhetorical toolkit). The notions of autism parent and its corollary, that of the heroic nature it demands (or creates) within them are both worth exploring, due to their narrative and rhetorical weight and presence. Autism parents The recruitment of parents and partners as helpers is sought traditionally for problems of illness. However, there are peculiar communicative issues that arise with each disease, and particularly in the context of mental conditions, disease, or illnesses. The “autism parent” of today and the “parent … researcher” (Eyal, 2010, p. 54) of a few decades ago share many similarities such as their dedication to their children, dogged pursuit of any possible resources, and encyclopedic, almost obsessive knowledge (and observation) of their child. They differ substantially in others however: The constraints and opportunities afforded by contemporary settings have dampened the need for (direct, participatory) parent research and provided more easily accessed information on treatment, resources and intervention, allowing more parents to involve themselves in their child's treatment and education. Activism, likewise, has broadened beyond recognition and resources and into the realms of advocacy (for personhood, for sympathy, for support) and access (to resources, to funding, to diagnoses, and treatment). What has not changed, at the institutional level, is the defensiveness (Eyal et al., 2010) involved. As mentioned earlier, the fight to separate autism from mental retardation was a complex and difficult one, requiring complete reframing of the condition, withdrawal from the NARRATIVES IN THE AUTISM PARADIGM 150 established, dominant hierarchies and (socio-structural) institutions concerning mental health (and related conditions, many only just beginning to differentiate and define themselves), and (re)creating a different kind of system. Decentralized and diverse, the new model created and entailed new models of objectivity, credibility, and radically altered the relationship(s) between clinicians, researchers, parents, and autistic children. Early parental advocates advanced theories of autism as a neurobiological condition rendering their children helpless and/or infantile and in need of (funding for) constant care and research. As perpetual children, autistic people were (and often are) considered categorically incompetent both colloquially and technically: their very biology preventing them from ever attaining the skills necessary for basic communication, let alone independence or legal competence. That move pulled parents to the fore, vesting them not only with the agency to make decisions and perform treatment, but also the imperative to do so; parents not taking such an active part—by necessity or by choice—became in some way 'bad parents,' or at best helpless victims, the very stigma the initial framing sought to avoid. The contemporary autism parent is faced with something their predecessors weren't, however: autistic adults, most notably autistic self-advocates. Although autistic adults have been around for as long as autism has, they have only recently become visible enough to force engagement. With the advent of the internet and its rapid development of social communication and coordination tools, autistic people (like many marginalized groups) quickly formed communities, banding over shared experiences and expressing their personalities, analysis and feelings—in open defiance to the belief (still frequent among autism parents) that autism has stripped them of the ability to express (or even experience) those very things. (Super) heroes (Super) heroes. A hallmark aspect of discourse surrounding autism, families, and NARRATIVES IN THE AUTISM PARADIGM 151 parenting is the concept of parents (and other care providers) as superheroes. It is difficult to pinpoint a specific origin for the concept of superhero as applied to Autism Parents or caretakers, but it bears mentioning for its overwhelming presence, from T-shirts to stickers with messages such as “I'm raising a child with autism. What's your superpower?” (Zazzle, 2016) or “Super heroes speak autism” (Represent, 2016) to awards offered to “Autism superheroes” given by multiple local associations (Autism West Midlands, 2014; Race for Autism, 2016). Discursively, its foundations are fairly straightforward, once one breaks down the concept into “heroes” and “super powers”. Similar in some ways to the 1980s concept of “Supermom”, finding time to raise children and maintain the familial home while working, the super powers of Autism Parents shed the gender requirement, as well as the employment aspect, but raised the bar on what constitutes raising the children, specifically those on the autism spectrum. Parent-researcher (Eyal et al., 2010), but also parent-therapist, parent-counselor, or parent-activist, they not only cater for the special needs of their child, but also take up the banner of autism itself, educating their acquaintances and strangers alike on what autism is, the proper ways to respond to it, speaking for better governmental support and aid, or spreading the word on their situation and the state of autism on the soapboxes of blogs and forums. The many responsibilities ascribed to such parents, and their uncanny knowledge and understanding of their autistic child can easily be described as super powers: I often feel the weight of the world on my shoulders, just like Superman: needed, essential, and indispensable. I usually take my autism momma superpowers in stride — cleaning up explosive poop, using my x-ray vision to decipher the needs and wants of my non-verbal child, exercising superhuman strength during a time and community where NARRATIVES IN THE AUTISM PARADIGM 152 the feelings of hopelessness and despair are ubiquitous and commonplace, flying with superhuman speed from one adventure to the next – (everywhere from fermenting coconut water to saving my neurotypical toddler’s face from being mauled or to catch my toothbrush from becoming the next toilet scrubber), and of course my powers of eidetic memory, allowing me to remember each and every symptom experienced by my son, almost like time-travel through my mind to the very incident, date and location of previous occurrence, triggering a memory of causation or relief to call upon for the present day’s behaviors or expressions. (Thinking Moms’ Revolution, 2012) When it comes to the heroic aspect of the “superhero” concept, Amos Fleischmann (2005) explored the way that parents of autistic children recount their experiences after learning of their child's condition; comparing blogs and online writing, he studied 33 such stories, and found a strong coherence with the traditional journey of a hero: 1. Innocence: prior to the advent of the epic tale. 2. Call to learning: where the protagonist awakens to a crisis that is not always the hero’s doing. 3. The test: where the hero must exhibit great boldness of spirit or strengths that the hero does not yet possess and therefore entails crises and pain. 4. Empowerment: where the hero, in the wake of an arduous trail that spurs the development of new talents of the self, is able to overcome obstacles he or she faces that in the past seemed insurmountable. 5. Emergence: where empowerment enables a ‘new self’ to emerge. 6. Celebration of clarity: where, as a product of the struggle he or she has endured, the hero not only emerges with the ability to prevail, but, through the personality NARRATIVES IN THE AUTISM PARADIGM 153 of his or her ‘new self’, goes on to help others as well. (Fleischmann, 2005) Molded into heroes by their tribulations, Autism Parents are empowered into action, their victory over circumstances allowing them hope and optimism in their role, and conferring them the ability, or even the responsibility, to empower others. Their journey makes them capable, and confident, to help and represent other parents in similar situations; their heroic tale gives weight to their words as representatives of the condition. The Autism Parent, as previously discussed, is not just a highly invested parent of an autistic person, but an identity formed around that bond and the life experiences it entails. The Autism Parent identity foregrounds those experiences, structuring itself around what it is like to parent an autistic child: the struggle and challenges and research and care, the mind-boggling amount of time and energy required to access and enact support, the love that drives them to go through it in the first place. They wear each facet as a badge of honor, proudly proclaiming their triumphs and begging understanding for their failures and challenges. This identity structure is inherently primed for superhero discourse. By no means exclusive to autism or parenting, superhero discourse takes seemingly mundane activities and deconstructs them, laying out the complex, taxing, unique, and unseen elements involved, and declares that anyone who could do that must possess extraordinary strength or abilities. As the Autism Parent identity is literally centered around the challenges (and rewards) of raising an autistic child, the connection is a natural one. The connection between heroism and work with autistic children has also been leveraged professionally, in the ongoing battle for legitimacy in theory and treatment. Bernard Rimland’s early 2000s campaign “Autism is Treatable”—also the name of his 2003 statement to congress (Rimland, 2003)—argued for increased funding for (and emphasis on) ‘biomedical’ interventions NARRATIVES IN THE AUTISM PARADIGM 154 such as chelation and dietary regimes (Rocque, 2010). He backed his appeal not only with theory, but with a spectacular display of emotional manipulation: To promote its approach, [the Autism Research Institute (ARI)] launched a campaign called "Autism is Treatable," which encouraged the parents of "recovered" children to share their stories with ARI to counter the prevailing medical view of autism as a more or less static, lifelong disability. These stories of recovery along with their fear-inducing counterpart, stories of autistic regression, feature centrally in ARI discourse. During the 2005 DAN! conference, a video of "recovered" autistic children was shown to attendees. In the video, Lou Diamond Phillips leads approximately 10 "recovered" children through the audience to the stage, with the music of Los Lobos's "La Bamba," from the soundtrack of the eponymous film in which Phillips plays the protagonist Ritchie Valens, in the background. The playing of this song at the moment of introduction recalls for the audience the celebrity of Phillips, thus lending him — and ARI's efforts to "defeat" autism — more authority. Upon taking the podium, Phillips says, "I have the great opportunity many times in my life to portray heroes on film and on television. Today it's nice to be here with some real heroes: these young people, and their families." The shot then cuts to the audience; we see women and men wiping tears from their eyes. Phillips goes on to say that he hopes to help break stereotypes by appearing in a soon-to-be-released film called El Cortez as a character with autism. He then interviews several children, asking them such questions as what are their names, what do they want to be when they grow up, and the like. Except for one child, who is also featured in the PBS video "Finding the Voices," no background information on their dis/ability is provided, only the assertion NARRATIVES IN THE AUTISM PARADIGM 155 that they have all "recovered" from autism. In these children the threat from autism has been neutralized; they and their families are heroes who demonstrate that ARI's therapies work. Rimland and his colleagues also become heroes in this figuration, for it is they who conducted research to develop these therapies, thereby restoring the children's natural potential. (Rocque, 2010, sec. Autism as Threat) Much like Jerry Lewis’s iconic Labor Day telethon for Muscular Dystrophy (for “Jerry's Kids” [as cited in Wiener, 2011]), Rimland’s “Autism is Treatable” campaign trotted out examples of the people he was trying to help. Where traditional campaigns put viewers into positions of (potential) heroism, however, Rimland’s version made the children heroes for successfully regaining their normality, and by extension their parents (who had them treated). By encouraging parents to share stories about treatment and their “recovered” children, they furthered the sense that the families were partners of ARI on the heroic journey to combat autism (Rocque, 2010). If the architecture of the Autism Parent identity made parents superheroes for the things they did, and campaign language made them heroes for trying (and succeeding), some social trends took it even further, hailing people as heroes for simple acceptance and tolerating the existence of autistic people in their lives, or loving someone despite their autism. While clearly complicated in practice, the abstract notions of basic human decency seem poor standards for exceptional behavior. This is heroism granted, as in the original Autism Parent construction, by the simple act of living with an autistic child. Instead of celebrating the work and experiences involved in mediating between the child, their autism, and the world, however, this type of heroism is awarded for having a relationship with the child at all. This construction centers on the concept NARRATIVES IN THE AUTISM PARADIGM 156 of the monstrous other, and the strength of will one must possess to bear its presence. It shows in ads talking about children who would never love, incredulous stares, and unsolicited commentary about the “bravery” of the person with the audacity to be in some way connected to a (potential) problem. This is one of those dangerous edges, where stigma and othering, expectations of care and narratives of relation come together to provide positive (or simply sympathetic) readings of beliefs and behaviors, which would, under most circumstances, be seen as monstrous or incomprehensible. The construction of the autistic as the extreme other creates a space outside of “normal” judgment; if simply being in its presence is enough to be praiseworthy, surely baseline assumptions about acceptable kinds of interaction must be lowered or adjusted as well. If it takes superhuman effort to love an autistic person, is it reasonable to expect others to care and interact well with them? Read this way, it is not much of a stretch to see an autistic person as a dangerous burden, one people might rightly react poorly to, and might even be ethically dubious to inflict on others or allow to use public resources. Written out this way, it seems melodramatic, and when viewed from a distance it certainly is. Unfortunately, that amount and type of distance is all too frequently not taken, as story after story surfaces about autistic people being tortured, neglected, and killed, using that exact set of mental contortions. Many frame their acts as kindness or mercy, and this occasionally edges back into heroism, as they are comforted, commended, and defended for the sacrifices they had to make (Thierry, Watkins, & Solomon, 2006). The archetype of the caretaker-superhero is a longstanding one, manifesting itself variously over differences in time and space. The puzzle-piece buttons and superhero banners are of a piece with the ‘heroic’ killings, not as points on a slippery slope, but landmarks on treacherous terrain. NARRATIVES IN THE AUTISM PARADIGM 157 The Cocktail of Advocacy Players in the world of autism advocacy can be loosely separated into formal organizations, informal groups, and independent actors (bloggers, activists, etc.). "Advocacy," however, is a broad (and contested) term; breaking it down into legal, community-oriented (Autism Community, Wrong Planet, etc.), social justice (ASAN), and interventionist (Autism Speaks) categories helps clear things up a bit. Individual bloggers (and others) may focus more on lived experience, but they generally fall into one of the above camps. No matter the size of the group or focus of the work, however, contact with (viewing, discussing, participating, using) an entity dedicated to the cause of autism activism or (self- )advocacy opens space for engagement with the topic, inviting active thinking on not only the goals and focus of the entities in question, but also the way action and communication work at the individual level. The very existence of these sites demands this, as it is nearly impossible to come across something so very human without relating it in some way to oneself, no matter how removed it may seem from one's life; it is not uncommon for people to encounter material on autism or autistic people for research or other purposes tangential (or entirely unrelated) to the goal of the group or work(s) in question, only to find themselves immersed, or applying what they find to their own lives (Raftery, 2011). Websites and organizations aren’t the only ways to engage issues regarding autism, autistic people and/or (self-)advocacy. The media generated around them—from pointed ‘flash films’ making or reacting to an issue—“I am Socks,” (Wady, 2009), “I am Autism Speaks” (MisterZonkerHarris, 2009; NonSpeakingNotSilent, 2015)—to polished and intentional videos and campaigns (“Autism Every Day” [Thierry et al., 2006]; “I am Autism” [Cuarón & Mann, 2009])—open up different, but not dissimilar, spaces for debate and engagement. The directed NARRATIVES IN THE AUTISM PARADIGM 158 nature of a thought or an argument becomes brighter, stronger, as attribution errors and media consumption processes build up, taking what might have initially been an “intensely personal expression by … two fathers” and elevating it to a somewhat blanket or universalizing statement. The more universalizing the statement, the more visible the product; the more people something claims to speak for, the more space there is for contestation, for dissensus. Every point made public is a point made open to analysis and critique. The internet makes possible connections between people of all sorts, and provides fertile ground for the formation of communities, groups, coalitions and alliances. This is particularly important for those whose circumstances (or shared interests) make meeting or communicating with each other difficult or impossible. The autism community has flourished online, connecting people isolated or severely impaired together and facilitating communication, resource exchange, (inter)action, and (self-)advocacy. A parallel community emerged alongside it, composed largely of people in close contact with autistic people, particularly caretakers or other people responsible for or living with them. Activist and advocacy work, group formation, and (inter)action take place there as well, of course, but the nature of the community, founded on the relationship between themselves and autistic people, fosters a tendency to reaffirm membership and belonging by creating outward signs of group membership such as logos, jargon, imagery and well-developed branding. Branding is such an essential part of community maintenance that some symbols—most prominently the Autism Speaks puzzle piece—spread widely enough to threaten genericization. Of course, as that particular image belongs to an advocacy-oriented group with a desire to reach a wide audience, the near-viral spread of the symbol counts as a significant success. Some groups have used that genericization as a sort of code, incorporating it into designs otherwise NARRATIVES IN THE AUTISM PARADIGM 159 completely unrelated. Others use it as a way to tie together identities that they build using other imagery (and occasionally ideology and/or jargon) with their autism-relationship identities. The “superhero” phenomenon analyzed above is an excellent example of this. The use of the puzzle piece serves as shorthand for group membership; it sends the message that one is (still) a part of the associated community, invested enough that they would wear its sign on their skin, and put their membership on display for all the world to see. The image of a puzzle might ironically be a fitting description for the fractured microcosm of autism advocacy, but its lines of separation are not so cleanly defined, nor is its whole cohesive enough. Rather, it seems closer to a cocktail, its different component enhancing or clashing with others, its whole fluidly settling into a balance of phases, waves of dissensus rippling through, ensuring it doesn't become inert. Chapter 6: Conclusion This dissertation refuses to essay a conclusion in the form of a summation, schematization, or finalization of things found. As the work began with a personal note about the research process, so it must come to a final chapter that is intermediate, featuring a communication subject that continues to thwart sweeping up and shuttling off the residues of texts and performances. Autism constitutes an ongoing controversy over the social boundaries and cultural resources of a meeting between minds, where interaction takes on stresses and becomes sorted into various scientific, legal, medical, social, and activist efforts at control and/or understanding. My final chapter, therefore, includes a new appreciation of the scope and dimensions of a controversy where words and things, helpful and unhelpful interventions, and strategies of empowerment and dominance, arguably, are unsettled in a variety of different equations. The final chapter reposes uncanny questions that continue to appear. Autism, as a NARRATIVES IN THE AUTISM PARADIGM 160 phenomenon, is an incredible mess. The textual structures of identification and authority are unsettled and the performative resources, volatile. Its history is tangled. Deinstutionalization, scientific upheaval, struggles for resources, political place, and shifting notions of blame and responsibility mingling together to take an obscure diagnosis of a fairly rare constellation of symptoms to a multifaceted construct. Science, politics, philosophy, advocacy, identity (and more than a little money) coruscates across endless cycles of new history and reflexive modernization. It is impossible to discuss Autism along only one dimension. To speak of diagnoses is to raise issues about history, symptomology, epidemiology, and pathology, even to call into question the relationship between science, community, and politics itself. To speak of services or advocacy one must confront questions of identity, (dis)ability, voice, perspective, stigma, and the distinctions between aid, advocacy, and charity, awareness, acceptance, and accommodation. Pinning down symptomology goes beyond biology to philosophy, the definitions of normality, humanity, and lack. Law, which should be simple (if not necessarily easy or straightforward), runs into problems with power and privilege (which is normal). Autism challenges the question of true representation, and what it means to speak, where the boundaries of human communication are, and who is allowed to be human (which is rather less normal). It is likewise seemingly impossible to bring up autism in any ordinary exchange without receiving impassioned, opinionated responses about both autistic people and their lives, and impacts on the lives of others. Autism touches everyone in some way, personally, socially, or in the abstract; for better or worse, it is now a part of the US, cultural, media, and legal landscape. Documenting the Landscape If autism is now part of the landscape, it may be useful to look at who paints the NARRATIVES IN THE AUTISM PARADIGM 161 mountains, maintains the forest, defaces the fields or plants a billboard to block the view. The forces at play, myself included, all have very different perspectives taking in the scenery. Lights (or texts) Lights (or texts). As with most conditions and phenomena, texts are used to define and order autism in everyday life. People turn to medical texts, news stories, and advisory documents for information and instruction from trusted sources; foremost among these resources are texts that trade on trust gained by virtue of their participation in the modern constructs of expert systems (Giddens, 1990). In this case, expertise can be said to translate into authority, where the trust vested in them grants and entails the authority of the texts themselves. Texts gain and preserve their authority by virtue of both authorship (the status and context of their generators) and authorization (the status and context of their distributors). This positioning also serves to circumscribe and mandate institutional intervention, obligation and duties. Blame is likewise allocated, ascribed to persons and groups according to the content and structure(s) inherent in the texts in which the subject(s) are constructed. Camera (in media) Camera (in media). Conflict is an essential part of storytelling, which lies at the core of most media presentations today, including representations of autism. Whether it be the juxtaposition between “us” and “them” in a news story, the growth of a character over an epic poem, or the tension between “friends” in a romantic comedy, antagonists and protagonists conflict (or change). The clash makes a drama compelling; struggle makes a drama truly a story instead of a history or a recounting of fact. Mass media, particularly entertainment media, relies on the drama of expressing difference and the conflicts arising from those differences. In the case of autism, the age-old admixture of genius and madness comes into play, presenting a spectrum of behavior ranging from pure ‘madness’ (rocking, shouting, echolalia) to pure ‘genius’ (disproportionate skill in one or more areas of expertise, hyperfocus, intuitive leaps inexplicable NARRATIVES IN THE AUTISM PARADIGM 162 to the viewer). When autism is the focus of the work, the balance between genius and madness often takes the form of savantism, where both proficiency and impairment are taken to their extremes, subject by subject, skill by skill; a savant character may be brilliant at math but unable to tie her shoes (a combination often attributed to Einstein). When the plot or characters are the focus, however, mixed states generally take the form of both-and characterizations; a character may be both highly verbal and have difficulty tailoring their speech to fit the (social) situations in which they find themselves. Action (and activism) Action (and activism). Autism related research, charity, and (self-)advocacy groups (and communities) often network and pursue similar goals but with distinctive signature and stylistic inflections. Autism-interested groups are supported by similar and/or identical means, and often intertwine. Both charity and (self-)advocacy groups frequently fund or work with research groups, for instance, and charities and (self-)advocacy groups share many of the same tactics and resources as well. Despite these similarities, the traits of individual groups and communities vary widely in scale, strategy, structure, goals, philosophy, and resources. Some funders offer vast amounts of money to various groups, but are themselves neutral in their stance toward autism. Others focus on intersectional concerns, political movements, or direct action. Some are simply sites of engagement which facilitate and encourage advocacy, identity work, discussion, research, and action (both on- and offline). Those interested in direct action do so over a variety of platforms, from flash blogs, speeches, video responses, letters (both open and physical), forum discussions, inter-blog discussion, even physical protests and rallies. These events move issues from within their NARRATIVES IN THE AUTISM PARADIGM 163 localized contexts—online groups, formal institutions, ad-hoc coalitions—to a larger, more public context, with the ‘loudest’ and most influential actors giving the appearance of consensus on their particular topics. Representations of consensus—particularly in the case of controversial topics (e.g. vaccines, cure) or objects (e.g. “I am Autism” [Cuarón & Mann, 2009])—necessarily entail opportunities for dissensus, where challenges to the posited consensus open space for dialogue and debate. It’s a wrap It's a wrap. Stories are developed through, shaped by, and (re-)created with a narrative process in which information is taken in, run through various filters, biases and lenses, and transformed into (mostly) coherent ways to understand and order the world. Bound up in texts, woven through performances, pervading daily life, the narrative model of autism not only explains how things work, but why the administrative mechanisms work as powerfully as they do, and what, if anything, should be done. In the case of autism, this process is suspended in the tangle of conflicting information, social ambivalence, and distressing liminality which makes up the Autism Paradigm. Given the oddness of the situation, a Seussical machine seems a perfect way to illustrate the Image 6: The "Narrative Machine." NARRATIVES IN THE AUTISM PARADIGM 164 process. This machine, this dispositif for the theory underlying the dissertation, also serves to contextualize and illuminate the work that the dissertation is attempting to do. At each new sub- function there are moments for choice, for action, and while the process is largely unconscious and instant (especially during daily life), there is room in those moments of choice for great change, learning, and growth. The cartoon dispositif is not Seussical merely because it is cool, nor is it a machine simply because it is a convenient metaphor for the narrative process. The Narrative Machine is based on a tool for young learners called Function Machines. They are illustrations of machines “programmed” with various mathematical functions, which learners then use to transform the numbers they input into (hopefully) correct answers as output. The Narrative Machine parallels and extends these constructs, eschewing numbers in favor of facts, context, and standpoint, and supplying meta-narratives, narrative types, and narrative mechanisms to produce (hopefully) coherent stories about the world. The Seussical nature of the machine indicates the awkwardness and uncertainty of the Autism Paradigm. While there is a more-or-less clear path from beginning to end, there are twists and turns, dead ends and bizarre outcroppings to get lost or distracted in. As with most things written by “Dr. Seuss” (Theodor Geisel), the workings of this machine are, despite their complexity and oddness, visible to the audience. One can watch as a person takes in their context, perspective, and the facts available to them and weaves them together to create a story to explain what they are experiencing (and perforce what needs to be done about it). This process is seen most clearly in context of the representative anecdote analyzed in the previous chapter, the short film “I am Autism.” The organization behind it, Autism Speaks, is in a position of great power and visibility, and its stories reverberate both on- and offline, from blog NARRATIVES IN THE AUTISM PARADIGM 165 posts to individual stories, to campus crusades, to “Light it up Blue,” to releasing the video in question at a UN event, and continues to produce prominent, controversial campaigns and media products. As such a large presence, their work winds up taking the de facto position of The Voice of Autism (advocacy), a perception furthered explicitly by their name, slogan, and rhetoric. This allows their work to be read as representing consensus on autism and related topics, such as the lives (and existence) of autistic adults. That prominence, however, creates an opportunity for dissensus as well. By creating such large works, by showing the world their thoughts writ large, their processes, assumptions, and sources, Autism Speaks sets itself up for dissection, for people to poke at it from every angle. The narratives underlying the stories they present to the world are exposed, and all of the choices can be seen and analyzed. The analysis, critique and conflict engaged in can prompt change—or cause people to dig in their heels and entrench their positions as they feel threatened (or proven right by the behavior of their adversaries). My dissertation is a patchwork quilt, stitching together instances and analyses of these dynamics in different contexts, with different media, in different ways. Once More, With Feeling First, there was autism. Long before it was identified, whether as a disorder, phenomenon, or identity, long before some talked of an “epidemic,” there were already autistic people. There are speculations that such historical figures as Isaac Newton, Nikola Tesla, or Albert Einstein might have been diagnosed as being on the spectrum, had there been such a spectrum to be on during their lifetime (Muir, 2003; Fitzgerald, 2005; James, 2005). Some go as far as retroactively placing Wittgenstein or Hitler on the spectrum as well (Fitzgerald, 2003). There is no general agreement for those diagnoses, and some of them—notably Hitler's—stand NARRATIVES IN THE AUTISM PARADIGM 166 on shaky ground, but autism did not come out of thin air, and while diagnostic tools and categories are relatively recent, autistic people have existed for much longer. They might have simply been considered eccentric or quirky, diagnosed and institutionalized as schizophrenic, or affected with childhood retardation, depending on the time, their wealth, and situation, or the gravity of their symptoms. While the rhetorical difference of having a label for them does not inherently change their condition, one can hope that society has since moved in a direction whereby autistic people might live fulfilling lives without needing to formulate the laws of gravity, invent the light bulb, or invade Poland. One thing is for sure, it is not quite there yet. A term and a diagnosis for it were established—or rather, the first draft of a diagnosis and category still in contention today—from two different angles. Leo Kanner (1943) and Hans Asperger (1944), showed from the beginning—in their phrasing and approach—the first signs of a schism tearing science (social and otherwise) to this day: whether the subject of study (and further, intervention, help, action) was the autistic person, or their family. While both reached somewhat similar conclusions regarding how autism looks and behaves, their foci and attention regarding where to look for a cause, a solution, or improvement differ fairly radically. It would be hasty to conclude that just because both diagnoses have since been folded into a single spectrum, so too their approaches should be seen as facets of the same thing. It is also worth noting that Kanner's (1943) description as autism, be it because of its origin, for chronological, linguistic, or actual diagnostic reasons, has been the de facto standard for how affected people were seen and presented, while Asperger syndrome was generally codified as a “lighter” version even when the two are seen as a single spectrum. From the very beginning, whether a binary or scale, there were already more or less autistic people, more or less affected, more or less “authentic,” and thus more or less relevant to the point one is trying to make about them. NARRATIVES IN THE AUTISM PARADIGM 167 Without a doubt, a lot has been said about them. The science behind autism has been refined since the days of Asperger (1944) and Kanner (1943), from theories about its origin (environmental, genetic, or other), to theories about its implications (altered or impossible communication, cerebral imaging to determine the affected or altered regions of the brain), to attempts at curing or fixing the condition (institutionalization, applied behavioral therapy, but also somewhere in between shock therapy, chemical castration, etc.), to ways to improve the situation for autistic people, their families, or hopefully both (assistive technology, education programs). All the while, each of those steps was debated, argued on ethical, medical or practical bases, shaped preferentially through charity, advocacy, and politics. What emerged was a fractured, messy, oftentimes counterproductive microcosm of associations, families, and individuals pitted against one another for control of what tomorrow's focus would be for funding and effort. The boundaries between social and medical (and diagnostic) sciences are particularly vague in the context of autism, and social scientists and academics have meanwhile been not only debating the relative merits of the different scientific approaches and their consequences, but also forming their own understanding of autism through what it meant about the nature of communication, or even humanity as a whole. Debate rages about how, and whether, autistic people can communicate, and whether what they do say is trustworthy, their own words, representative of other autistic people, or if those words are words and communication at all. The few forays of autistic people into the field are too easily dismissed by the dominant thinking of autism as absence of a Theory of Mind, and its implications about what autistic people can be trusted or heard about. Invested in both the social and diagnostic sciences of autism, associations such as Autism NARRATIVES IN THE AUTISM PARADIGM 168 Speaks attempt to shape the legal, practical, and societal frameworks in the name and for the sake of their members and contributors, predominantly families of autistic children. With celebrity supporters, UN summits, and the ubiquitous imagery of the puzzle piece, Autism Speaks is in many ways the visible face of autism. What the layman on the street knows of autism and autistic people owes more to Autism Speaks and similar associations than perhaps any other source. Through donations and funding, campaigns and information, research and lobbying, their influence can be felt far and wide, and their message and approach shape public opinion and understanding of the issues, as well as the resultant media and cultural representations that cement that image. There is no denying the positive impact on research funding, public acceptance and legal protection that has come from those organizations, but the focus, rhetoric and structure of some (most visibly that of Autism Speaks) is not to the taste of everyone, particularly many autistic people themselves. Despite recent efforts toward being more inclusive, Autism Speaks still is an association of, by, and for families of autistic people, mainly parents, rather than autistic people themselves. If it is criticized for not truly speaking for autistic people, it is partly because, as organizations normally should, it speaks for its members, the vast majority of which are not themselves autistic. There are organizations representing autistic people themselves, however, the most influential of which is the Autism Self-Advocacy Network (ASAN). This group can be generally thought to illustrate a basic consensus for the voices that oppose Autism Speaks and the associative, legal and social advances that tend to follow its directions. ASAN's message is clear and simple in its broad lines: Autistic people are people too, people that might have difficulty in certain domains, but people worth no less than others, no less human than others, and no less NARRATIVES IN THE AUTISM PARADIGM 169 deserving of the rights afforded others—including the right not to be eliminated through a cure or eugenics campaign. The threats autistic people as a community face are not without precedent, and they have reached the same conclusion D/deaf or Little People have before them: that the solution is unity and representation. ASAN seems to be serving the first part of that goal, but representation is still lacking, partly because of the specific nature of autism. Deprived of the right to express their own opinion on the basis that some other people on the spectrum are (assumed to be) unable to do the same, their agency is attacked on all fronts: medicine and psychiatry see them as a problem to eradicate, with a focus on identifying and repairing whatever is 'wrong' with them; social sciences see them as a riddle to solve, a black box of non-communication that they need to decipher; culture and media see in them a fascinating other, that can be used to instill fear both for their well-being as that of those around them, be it as a plot device or a touching campaign; advocacy sees them as a burden for their families, a helpless, voice-less baggage that needs to be spoken for, not with. As a result, ASAN has been eclipsed by Autism Speaks as the voice and visage of autism, and its influence is tragically stunted. Autistic people's absence from almost all major debates about them, from the most basic “What is autism?” to the most specific questions of advocacy, law, or research does not point to a single cause. It is not just because Autism Speaks speaks for them using the excuse that they “have no voice.” It's not just because social scientists tells them they “perceive people as hunks of flesh moving mindlessly through space” (David Smith, as cited in Yergeau 2013) and thus cannot speak for themselves or anyone else, nor that the law frames them as childlike and/or incompetent. It is not just that the media cannot decide if they are babbling (occasionally brilliant) lunatics or entirely mute and hopeless, nor is it that positive portrayals of autism and NARRATIVES IN THE AUTISM PARADIGM 170 autistic people are bound up with notions of genius and madness. It is all of those at once, colliding to present the illusion that autism-the-condition is the entirety of autism-the- phenomenon. Autism is not agentic. It is not a villain or a kidnapper or a monster come to steal away children. Autism is a condition, a cause, an experience and a phenomenon. It is a field of study, a shorthand for behavior, a diagnosis, an identity, a culture. It is a site of engagement, a conceptual battleground, an epistemological quandary. It is contested waters, impairment and ability, gifts and deficits. Autism, no matter how it is framed, as something one has or is or is afflicted by, is an integral part of the lives of autistic people and the people around them. Autism is a paradigm to be lived in, a narrative to be used, a lens through which to see the world. Autism, as all this, ripples through culture, science and media, too big and too complex and too difficult to fit into any single box, no matter how large or precise. To try is to attempt to fit a tesseract into a round hole like a peg in a game. Efforts to circumscribe autism have amounted to chastising it for being the wrong shape, the wrong size, or having too many dimensions. Meanwhile, autism itself has been trying to define itself, banging on the sides of whichever polygon it was tentatively crammed into, crying out that it can find its own place in the world, but falling on deaf ears (so to speak). Throughout it all, one is tempted to repurpose a familiar slogan—betraying its original intent: Autism speaks. It’s time to listen. NARRATIVES IN THE AUTISM PARADIGM 171 References abfh. (2009a, September 25). Autism Speaks Deceives Parents. Retrieved from http://autisticbfh.blogspot.ch/2009/09/autism-speaks-deceives-parents.html abfh. (2009b, October 4). Alfonso Cuarón Praises Child Rapist. Retrieved from http://autisticbfh.blogspot.ch/2009/10/alfonso-cuaron-praises-child-rapist.html ADA Amendments Act, Pub. L. No. 110-325 (2008). American Psychiatric Association. (1952). 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Retrieved February 20, 2016, from http://www.zazzle.com/raising_a_child_with_autism_whats_your_super_power_shirt- 235414383902995005 NARRATIVES IN THE AUTISM PARADIGM 193 Appendix: “I am Autism” Transcript I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently. And with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric aids, cancer, and diabetes combined And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your NARRATIVES IN THE AUTISM PARADIGM 194 dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die? And the truth is, I am still winning, and you are scared. And you should be. I am autism. You ignored me. That was a mistake. And to autism I say: I am a father, a mother, a grandparent, a brother, a sister. We will spend every waking hour trying to weaken you. We don’t need sleep because we will not rest until you do. Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community. I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message. Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons. We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the European Union. We are the United Nations. We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated. We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children. Our capacity to love is greater than your capacity to overwhelm. Autism is naïve. You are alone. We are a community of warriors. We have a voice. NARRATIVES IN THE AUTISM PARADIGM 195 You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness. You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands? You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists. Autism, if you are not scared, you should be. When you came for my child, you forgot: you came for me. Autism, are you listening? (Cuarón & Mann, 2009)

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Creator Brown, Jamaica Ai-Etsuko (author)

Core Title Narratives in the autism paradigm: rhetoric, (re)presentation, and (inter)action

School Annenberg School for Communication

Degree Doctor of Philosophy

Degree Program Communication

Publication Date 06/21/2016

Defense Date 03/22/2016

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag activism,Asperger syndrome,autism,autistics,communicative advocacy,disorders of communication,DSM,law,media representation,narrative,OAI-PMH Harvest,online communities,philosophy,representation,representative anecdote,rhetoric,storytelling,theory of mind,therapy

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Advisor Goodnight, Gerald T. (committee chair), Cody, Michael J. (committee member), Thomas, Douglas (committee member)

Creator Email jamaica.brown@alumni.reed.edu,polanna@gmail.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c40-256735

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