Worlds of Autism

Worlds of Autism: Across the Spectrum of Neurological Difference

Joyce Davidson
Michael Orsini
Copyright Date: 2013
Pages: 368
https://www.jstor.org/stable/10.5749/j.ctt4cggsn
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  • Book Info
    Worlds of Autism
    Book Description:

    Since first being identified as a distinct psychiatric disorder in 1943, autism has been steeped in contestation and controversy. Present-day skirmishes over the potential causes of autism, how or even if it should be treated, and the place of Asperger's syndrome on the autism spectrum are the subjects of intense debate in the research community, in the media, and among those with autism and their families. Bringing together innovative work on autism by international scholars in the social sciences and humanities, Worlds of Autism boldly challenges the deficit narrative prevalent in both popular and scientific accounts of autism spectrum disorders, instead situating autism within an abilities framework that respects the complex personhood of individuals with autism. A major contribution to the emerging, interdisciplinary field of critical autism studies, this book is methodologically and conceptually broad. Its authors explore the philosophical questions raised by autism, such as how it complicates neurotypical understandings of personhood; grapple with the politics that inform autism research, treatment, and care; investigate the diagnosis of autism and the recognition of difference; and assess representations of autism and stories told by and about those with autism. From empathy, social circles, and Internet communities to biopolitics, genetics, and diagnoses, Worlds of Autism features a range of perspectives on autistic subjectivities and the politics of cognitive difference, confronting society's assumptions about those with autism and the characterization of autism as a disability. Contributors: Dana Lee Baker, Washington State U; Beatrice Bonniau, Paris Descartes U; Charlotte Brownlow, U of Southern Queensland, Australia; Kristin Bumiller, Amherst College; Brigitte Chamak, Paris Descartes U; Kristina Chew, Saint Peter's U, New Jersey; Patrick McDonagh, Concordia U, Montreal; Stuart Murray, U of Leeds; Majia Holmer Nadesan, Arizona State U; Christina Nicolaidis, Portland State U; Lindsay O'Dell, Open U, London; Francisco Ortega, State U of Rio de Janeiro; Mark Osteen, Loyola U, Maryland; Dawn Eddings Prince; Dora Raymaker; Sara Ryan, U of Oxford; Lila Walsh.

    eISBN: 978-1-4529-4023-6
    Subjects: Education, Sociology

Table of Contents

  1. Front Matter
    (pp. i-iv)
  2. Table of Contents
    (pp. v-vi)
  3. Acknowledgments
    (pp. vii-viii)
  4. INTRODUCTION. Critical Autism Studies: Notes on an Emerging Field
    (pp. 1-28)
    Michael Orsini and Joyce Davidson

    It is difficult to think, much less write, about autism today without some reference to the statistics. Talk of “exploding” prevalence rates and a public health crisis of “epidemic proportions” dominates the landscape (see Nash 2002). The onward march of statistical knowledge about autism—from a prevalence rate of 1 in 150 in 2000, to 1 in 110 in 2006, and 1 in 88 in 2008 (Centers for Disease Control and Prevention 2012)—communicates a sense of undeniable urgency (Rice et al. 2007). Autism is depicted as unstoppable and difficult to contain. Failing to intervene early, parents are warned, can...

  5. PART I. Approaching Autism
    • 1 Autism in an Age of Empathy: A Cautionary Critique
      (pp. 31-52)
      Patrick McDonagh

      “Empathy is among the most important of human characteristics,” writes Simon Baron-Cohen. “It enables not just social relationships and communication, but is a major basis for our moral code and for the inhibition of aggression. And whilst empathy may have some simpler equivalents in non-human species, its remarkable flowering in the human case is unique” (2006, 536). Baron-Cohen is not alone in his belief in empathy’s fundamental importance to human identity. “Empathy,” says philosopher Lou Agosta, “puts the human in human being,” whereas “the loss of empathy is equivalent to the loss of the individual’s being human” (2010, xiii–xiv)....

    • 2 Autism and the Posthuman
      (pp. 53-72)
      Stuart Murray

      In Not Even Wrong (2004), his book on the history of autism inspired by his relationship with his autistic son Morgan, Paul Collins pauses for a moment during his wider argument to note a particular way in which the condition interacts with an idea of the human:

      Autists are described by others—and by themselves—as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin to understand what it means to be human. Think of it: a disability is usually defined in terms of...

    • 3 Cerebralizing Autism within the Neurodiversity Movement
      (pp. 73-96)
      Francisco Ortega

      The 1990s were officially launched by then–U.S. president George H. W. Bush as the “Decade of the Brain” (Bush 1990), and some believe that the first hundred years of the new millennium will be its century (Dowling 2007). Such gestures support the drive to solve the puzzle of human consciousness and unravel the secrets of an organ described as the most complex of the universe. But proclaiming a decade or a century of the brain also signals the omnipresence of the brain as a major icon of contemporary culture—from literature and the plastic arts to medicine and the...

    • 4 Autism as a Form of Biological Citizenship
      (pp. 97-114)
      Charlotte Brownlow and Lindsay O’Dell

      In this chapter, we discuss the ways in which a biological explanation of autism has been refashioned into a neurological account of neurodiversity. The neurodiversity discourse functions as a critical tool with which people with autism may engage with negative and disabling mainstream models of autism. We outline the development of the neurodiversity movement, which claims autism as a difference from (and often as a superior identity to) “neurologically typicals” (NTs). The chapter draws on the concept of “biological citizens” alongside a construction of neurodiversity. The concept of biological citizenship has become part of a new critical engagement with various...

  6. PART II. Researching the Politics and Practice of Care
    • 5 Autism and Genetics: Profit, Risk, and Bare Life
      (pp. 117-142)
      Majia Holmer Nadesan

      In 2007, the U.S. Centers for Disease Control reported that autism-spectrum disorders affect 1 in 150 children. Parents, educators, medical professionals, and social-service providers demand that autism’s causes be identified and its social and economic risks be addressed and managed, despite considerable controversy over what autism actually is (see Nadesan 2005). Some autism advocates see autism as an inborn or environmentally caused medical condition that requires treatment and cure, whereas others see autism as a difference that requires accommodation.

      This chapter considers competing causal explanations and discusses the politics inherent within and informing these competing frameworks for interpreting and treating...

    • 6 Caring for Autism: Toward a More Responsive State
      (pp. 143-168)
      Kristin Bumiller

      Fewer than thirty years ago, the biomedical definition of autism gained acceptance over psychological explanations that often placed blame on the family (Bumiller 2009). This change in the understanding of autism ushered in new possibilities for treatment and forms of parent advocacy (Silverman 2011). This transformation was coterminous with a major shift in responsibility for the care of disabled children that began in the late 1970s. Children with disabilities were no longer fated to become wards of the state; the movement for family-based care revolutionized the disability world. The deinstitutionalization of care transformed expectations about the potential for a normal...

    • 7 Participatory Research with Autistic Communities: Shifting the System
      (pp. 169-188)
      Dora Raymaker and Christina Nicolaidis

      The relationship between scientists, minority communities, and mainstream society is complex and interconnected. Interactions between scientists and minorities can affect how society views, treats, and funds both community projects and academic research. Each year in the United States, hundreds of millions of dollars are poured into programs and research for people on the autism spectrum. But how many of these projects address the priorities of individuals on the spectrum?

      Traditional approaches to science—which typically do not include members of the population being studied in the development of the research—have a history of failing minority communities. Minority communities, in...

  7. PART III. Diagnosis and Difference in Autism
    • 8 Capturing Diagnostic Journeys of Life on the Autism Spectrum
      (pp. 191-212)
      Sara Ryan

      Autism-spectrum disorders (ASDs) trouble conventional understandings of the concept of diagnosis. As Judy Singer, drawing on her personal experiences as a person with ASD, suggests, “Whereas the traditional image of ‘diagnosis’ is of something reluctantly sought, dreaded, resisted and imposed from outside, people with ‘marginal’ neurological differences clamor at the gates, self-diagnosed and demanding to be let in” (1999, 65). Singer seeks to capture the peculiarity of the medicalization of autism in that, for her, ASD is ontologically linked to personal identity; it is not a condition that people have, but rather an identity that people are. Yet, for many,...

    • 9 Divided or Opposed? The Level-of-Functioning Arguments in Autism-Related Political Discourse in Canada
      (pp. 213-238)
      Dana Lee Baker and Lila Walsh

      Autism exists on a spectrum. Though ongoing debate among autism-policy stakeholders surrounds the question of whether the “D” in “ASD” should be “difference” or “disorder,” replaced with “conditions,” or dropped entirely, the designation “spectrum” tends currently to inspire less discursive interest.¹ The latter designation, which has also been used, for example, with fetal alcohol syndrome, signifies diversity of experience. One of the most influential sources of definitions of neurological differences is the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM), in which autism has been included as a distinct category since 1980. Each time the DSM has...

    • 10 Autism and Social Movements in France: A Comparative Perspective
      (pp. 239-258)
      Brigitte Chamak and Beatrice Bonniau

      Social movements in the field of health have emerged to challenge health-care access and quality of care, as well as to advocate for broader social change (Brown and Zavestoski 2004). Scholars interested in health-related social movements explore the dynamics that propel actors to mobilize collectively around health issues, and they examine, as well, the links between health-related and other social movements that are organized around cleavages such as race, gender, and class, among others (Barnett and Steuernagel 2007).

      This chapter provides a comparative perspective on autism advocacy using insights gleaned from the study of health-related social movements. In the field...

  8. PART IV. Cultural Productions and Representations of Autism
    • 11 Narrating Autism
      (pp. 261-284)
      Mark Osteen

      The rapidly rising tide of autism diagnoses has brought with it a large collection of autism stories. Despite the widely divergent abilities of persons with autism, however, many of these stories are strikingly similar. In this chapter, I outline a set of rules that these stories follow and that have threatened to collapse autism’s diversity into a menu of formulas. But these formulas constitute only one aspect of what I call “the narrative problem of autism.” A second element lies in the nature of autism itself. Because autistic people often tend to think less linearly than neurotypical folks, and because...

    • 12 The Shifting Horizons of Autism Online
      (pp. 285-304)
      Joyce Davidson and Michael Orsini

      This chapter investigates the perceived importance of the Internet for individuals on the autism spectrum. The larger project from which it draws was designed to look in more depth at significant themes that emerged from an earlier study of autistic autobiographies. These first-hand accounts frequently highlight the increasingly central and often facilitative role played by the computer, and specifically the Internet, in many autistic persons’ lives (Davidson 2008). In what follows, we aim to build on these findings, questioning in particular whether online activities expand or contract the social and emotional horizons of autistic lifeworlds.

      The potential importance of the...

    • 13 Autism and the Task of the Translator
      (pp. 305-318)
      Kristina Chew

      In writing about autism, whether by an autistic person or any other individual, representation is always an issue. In my son Charlie’s life, he is regularly being represented—by a teacher in his communication notebook, by a therapist on a progress report, and by me here. The quandary in representing Charlie is that he, the one being represented, is, all too often, limited in his ability to speak back and up about himself. I write about my son knowing that I may be very wrong about what he experiences, that it may be a very long time before he uses...

    • 14 “All the Things I Have Ever Been”: Autoethnographic Reflections on Academic Writing and Autism
      (pp. 319-330)
      Dawn Eddings Prince

      When neurotypical people picture people on the spectrum, usually stereotypes come to mind in spite of the ongoing efforts of those on the spectrum who are able to bridge the communication gap and tell their own stories in their own words. Perhaps this is human nature; certainly there are examples everywhere, in every clique and niche, of people whom one might describe as having “autistic” tendencies, or perhaps more accurately as having stereotypically autistic tendencies: singularity, an insular view of reality, a certain rigidity and love of reliable patterns that exclude or prohibit an easy flow, or a kind of...

  9. Contributors
    (pp. 331-334)
  10. Index
    (pp. 335-348)