Changing Conversations Around Autism: a Critical, Action Implicative Discourse Analysis of U.S
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CHANGING CONVERSATIONS AROUND AUTISM: A CRITICAL, ACTION IMPLICATIVE DISCOURSE ANALYSIS OF U.S. NEURODIVERSITY ADVOCACY ONLINE by JESSICA M.F. HUGHES B.A., Boston University, 2000 M.A., Lancaster University, U.K., 2004 A thesis submitted to the Faculty of the Graduate School of the University of Colorado in Partial fulfillment of the reQuirement for the degree of Doctor of Philosophy DePartment of Communication 2015 This thesis entitled: Changing Conversations Around Autism: A Critical, Action Implicative Discourse Analysis of U.S. Neurodiversity Advocacy Online written by Jessica Marie Fridy Hughes has been approved for the Department of Communication Robert T. Craig Karen Tracy Lisa A. Flores David Boromisza-Habashi Amy C. Wilkins Date 5/6/2015 The final copy of this thesis has been examined by the signatories, and we Find that both the content and the form meet acceptable presentation standards Of scholarly work in the above mentioned discipline. IRB protocol # __13-0600_______ iii Hughes, Jessica M.F. (Ph.D., Communication) Changing Conversations Around Autism: A Critical, Action Implicative Discourse Analysis of U.S. Neurodiversity Advocacy Online Thesis directed by Professors Robert T. Craig and Karen Tracy This dissertation offers a critical, action implicative discourse analysis of neurodiversity (ND) advocacy online. The neurodiversity movement is a contemporary disability rights movement aimed at autism acceptance grounded in an understanding of autism as natural neurological variation. ND advocacy is a site of discursive struggle where advocates work to redefine autism and combat stigma. This study takes a novel, hybrid discourse analytic approach in an effort to understand why ND advocacy is needed and how its emancipatory potential might be developed. Using a critical discourse analytic lens the author first examines dominant autism discourse in order to better understand how oppressive discursive mechanisms disadvantage autistic individuals in the U.S. Next, ND advocacy practices are reconstructed using action implicative discourse analytic methods to foster normative reflection about what ND advocacy ought to look like. The author finds that, while ND advocacy is making important strides in changing public conversations around autism, the young movement has yet to address its own problems of exclusion. The concluding chapter offers some ideas for ways in which advocates might work to include disenfranchised members of the autistic community and more parent advocates. iv Acknowledgements I feel very lucky to have found my way to the smart and supportive community of scholars that I’ve had the pleasure of working with the past five years. In particular, I’m deeply indebted to my mentors, Bob Craig, Karen Tracy, and David Boromisza-Habashi, for pushing me as a scholar, writer, and teacher from the beginning. I’m also grateful for the support, valuable feedback, and tough questions I received from my committee members and professors, Lisa Flores, John Jackson, Amy Wilkins, and Pete Simonson. To Jerry Hauser and the members of the dissertation writers’ workshop: Thank you so much for your insightful comments and your immeasurable support during the dissertation slog. To my CU cohort, especially Megan Morrissey, Christy Sims, Susana Martínez Guillem, Rex Parks, Marc Rich, Pascal Gagne, Bing Xiong, Elizabeth Eger, Kristina Ruiz Mesa, Meghan Dunn, and Jenna Hanchey: Our conversations have made me a stronger thinker and a better friend. Finally, to my family born and chosen, especially Joe and Jean Fridy, Goat and Ellis: I could not have done it without you. v Table of Contents Chapter 1 Analyzing Neurodiversity …………………………………………………… 1 2 The U.S. Disability Rights Movement and Communicative Approaches to Autism and Neurodiversity …………………………………………......... 16 3 Metatheory: Integrating GPT and CDA …………………………………….. 27 4 Methods and Materials ……………………………………………………… 53 5 Dominant Depictions of Autism as Tragedy ………………………………... 84 6 Divides in the Autism Community ………………………………………….. 130 7 Dilemmas of Neurodiversity Advocacy and Concluding Thoughts…………. 190 References …………………………………………………………………………… 221 vi Tables Table 1: Autism Speaks case study corpus overview ………………………. 61 Table 2: DDM case study overview ………………………………………… 65-6 Table 2: Self-advocate/parent divide case study corpus overview ………….. 71 1 Chapter 1 Analyzing Neurodiversity Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it—and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. (Sinclair, 1993) [T]he focus of the conversation has been on placing the blame for autism, and on trying to make autistic people something we are not and never can be: normal. This focus on a cure has prevented us from actually helping people. There’s been a lot of progress in the disability rights movement over the past 20 years, but people on the spectrum haven’t benefited from it because those representing us at the national level have been focused on causes and cures. (Ne’eman, quoted in Silberman, 2010) Only when the many shapes of personhood are recognized will justice and human rights be possible. (Baggs, 2007) Neurodiversity advocates like those quoted above “represent the disability rights perspective within the Autistic community” (ASAN, 2013a), a perspective characterized by counter-discourses working to change dominant conceptions of autism and disability. The neurodiversity movement is a “new kind of disabilities movement” (Harmon, 2004, p. 1), one that advocates for autism rights in part by redefining autism and other cognitive disabilities as natural, neurological differences, ways of being ‘wired’ (Blume, 1998). Neurodiversity (ND) advocates orient toward a model of disability rights grounded in acceptance for all ways of thinking and being. The concept of neurodiversity draws on the idea that “everyone has a different mind, a different way of being” and that one should not “suppress 2 these differences [but] accept and support them” (Camley, 2005). According to ND advocates, “neurodiversity [is] a natural and valuable form of human diversity which should be considered as similar in many ways to other forms of human diversity, such as racial diversity, sexual and gender diversity, and cultural diversity” (Walker, 2014a). From this point of view, curing autism is not a desirable goal. We need to stop making autism advocacy about trying to create a world where there aren’t any autistic people, and start building one in which autistic people have the rights and support they deserve. That’s the goal . of the neurodiversity movement as a whole. (Ne’eman, quoted in Silberman, 2010) Autism, Autistic Identity, and a Note on Terminology The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) provides criteria for identifying autism spectrum disorders (ASD) that are organized around a triad of impairments, namely “deficits in social communication and social interaction . [and r]estricted, repetitive patterns of behavior, interests, or activities” (Centers for Disease Control and Prevention, 2015a). Autism is characterized as a spectrum disorder because symptoms occur across multiple contexts and can vary significantly in terms of how pronounced they are. Symptoms of ASD can include delays in or failure to acquire spoken communication, difficulties understanding and reciprocating typical non-verbal communication such as body language and eye contact, difficulties developing and maintaining relationships, and tendencies to engage in repetitive movements or self-stimulatory behaviors, commonly called ‘stimming.’ For ND advocates, these ‘symptoms’ are simply differences related to autistic neurology that must be accepted rather than fixed or cured. Autistic first-person accounts often relate “significant differences in information processing, sensory processing, communication abilities 3 or styles, social skills, and learning styles” (Brown, n.d.). Some relate difficulties learning or interpreting pragmatic or metaphoric meaning. Many discuss inabilities to engage in small talk. Many describe being unable to read facial expressions or to produce expected facial expressions themselves. Some autistics write about losing the ability to speak, having difficulties speaking, and being unable to speak at all. Many autistics describe hypersensitivity to sensory stimuli, and using stims such as hand flapping, pacing, or even self-injurious behaviors to help them manage painful feelings of over-stimulation. The Autistic Self Advocacy Network (2015b) lists seven common characteristics of autism, including 1) “Different sensory experiences” like heightened sensitivity and synesthesia, any combination of mixed perception (e.g., hearing color, seeing words and letters as particular colors); 2) “Non-standard ways of learning and approaching problem solving;” 3) “Deeply focused thinking and passionate interests”—what autistics commonly refer to as ‘special interests’ and diagnostic literature calls ‘perseveration;’ 4) “Atypical, sometimes repetitive, movement;” 5) “Need for consistency, routine, and order;” 6) “Difficulties in understanding and expressing language as used in typical communication, both verbal and non-verbal,” and in particular, difficulties expressing emotions or feelings in words; and 7) “Difficulties