Worlds of Autism
Across the Spectrum of Neurological Difference
Publication Year: 2013
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.
Published by: University of Minnesota Press
Download PDF (150.9 KB)
Download PDF (52.9 KB)
Download PDF (47.6 KB)
We would like to acknowledge the generous financial support of the Social Sciences and Humanities Research Council of Canada. Many of the contributors to this volume presented drafts of their chapters at the 2010 Critical Autism Studies workshop at the University of Ottawa, and this event could not have taken place without the substantial funding pro-...
INTRODUCTION. Critical Autism Studies: Notes on an Emerging Field
Download PDF (204.0 KB)
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). ...
PART I. Approaching Autism
1. Autism in an Age of Empathy: A Cautionary Critique
Download PDF (176.7 KB)
...?Empathy is among the most important of human characteristics,? writes Simon Baron- Cohen. ?It enables not just social relation-ships 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 ...
2. Autism and the Posthuman
Download PDF (151.2 KB)
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 among humans. But there?s an irony to this, for precisely the op-posite is true. They are us, and to understand them is to begin to ...
3. Cerebralizing Autism within the Neurodiversity Movement
Download PDF (201.7 KB)
We are a world of funny brains, and neuroscience will help us to 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 ...
4. Autism as a Form of Biological Citizenship
Download PDF (142.7 KB)
In this chapter, we discuss the ways in which a biological explana-tion 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 neuro-diversity movement, which claims autism as a difference from (and often ...
PART II. Researching the Politics and Practice of Care
5. Autism and Genetics: Profit, Risk, and Bare Life
Download PDF (213.1 KB)
In 2007, the U.S. Centers for Disease Control reported that autism- spectrum disorders affect 1 in 150 children. Parents, educators, medi-cal 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 en-...
6. Caring for Autism: Toward a More Responsive State
Download PDF (185.2 KB)
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 par-ent advocacy (Silverman 2011). This transformation was coterminous with a major shift in responsibility for the care of disabled children that ...
7. Participatory Research with Autistic Communities: Shifting the System
Download PDF (232.7 KB)
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 pro-grams and research for people on the autism spectrum. But how many ...
PART III. Diagnosis and Difference in Autism
8. Capturing Diagnostic Journeys of Life on the Autism Spectrum
Download PDF (155.6 KB)
Autism- spectrum disorders (ASDs) trouble conventional under-standings 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? neuro-logical differences clamor at the gates, self- diagnosed and demanding ...
9. Divided or Opposed? The Level-of-Functioning Arguments in Autism-Related Political Discourse in Canada
Download PDF (197.2 KB)
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 in-spire less discursive interest.1 The latter designation, which has also been used, for example, with fetal alcohol syndrome, signifies diver-...
10. Autism and Social Movements in France: A Comparative Perspective
Download PDF (173.3 KB)
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 ac-tors to mobilize collectively around health issues, and they examine, as well, the links between health- related and other social movements that ...
PART IV. Cultural Productions and Representations of Autism
11. Narrating Autism
Download PDF (182.1 KB)
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 ...
12. The Shifting Horizons of Autism Online
Download PDF (166.3 KB)
I feel that my world has expanded because of the Internet, and I have 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 ...
13. Autism and the Task of the Translator
Download PDF (131.8 KB)
But over the years of working at it [Catullus poem 101], I came to think of translating as a room, not exactly an unknown room, In writing about autism, whether by an autistic person or any other in-dividual, representation is always an issue. In my son Charlie?s life, he is regularly being represented? by a teacher in his communication note-...
14. “All the Things I Have Ever Been”: Autoethnographic Refiections on Academic Writing and Autism
Download PDF (99.4 KB)
When neurotypical people picture people on the spectrum, usu-ally 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 na-ture; certainly there are examples everywhere, in every clique and niche, of people whom one might describe as having ?autistic? tendencies, or ...
Download PDF (60.6 KB)
DANA LEE BAKER is associate professor in the School of Politics, Philosophy, and Public Affairs at Washington State University. Her pri-mary research interests are neurodiversity, neuroethics, and disability- policy design. She is the author of The Politics of Neurodiversity: Why Public Center in Medicine, Sciences, Health, Mental Health, and Health Policy) ...
Download PDF (712.1 KB)
Page Count: 368
Publication Year: 2013