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Voice and Identity in the Autistic Space of the Blogosphere

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This document is downloaded from DR‑NTU (https://dr.ntu.edu.sg) Nanyang Technological University, Singapore. Voice and identity in the autistic space of the blogosphere Seidmann, Vered 2018 Seidmann, V. (2018). Voice and identity in the autistic space of the blogosphere. Doctoral thesis, Nanyang Technological University, Singapore. http://hdl.handle.net/10356/73378 https://doi.org/10.32657/10356/73378 Nanyang Technological University Downloaded on 26 Sep 2021 16:42:42 SGT OF VOICE AND IDENTITY IN THE AUTISTIC SPACE THE BLOGOSPHERE THE VOICE AND IDENTITY IN THE AUTISTIC SPACE OF THE BLOGOSPHERE VERED SEIDMANN VERED SEIDMANN WEE KIM WEE SCHOOL OF COMMUNICATION AND INFORMATION 201 2018 8 i | Page VOICE AND IDENTITY IN THE AUTISTIC SPACE OF THE BLOGOSPHERE VERED SEIDMANN Wee Kim Wee School of Communication and Information A thesis submitted to the Nanyang Technological University in fulfilment of the requirement for the degree of Doctor of Philosophy 2018 Supervisor: Associate Professor Jung Younbo ii | Page ABSTRACT The goal of this study is to explore how autistic identity is constructed through blogs, and, more broadly, to show how communication theory can provide new ways of looking at the communication behaviors of autistic persons in the autistic space of the blogosphere. This study was guided by the following three questions: (1) How do autistic people structure their identity as bloggers and how do they negotiate their identity through their blogs? (2) What does autistic identity mean to bloggers? (3) What are the underlying constructs of autistic identity? To address these questions, a grounded theory approach was applied to organize the main data collection, which included intensive face-to-face interviews, email interviews with bloggers and textual analysis of 2,873 blog posts with more than 10,000 pages of blog pages from 16 blogs authored by bloggers in Australia, Israel, Singapore, United Kingdom and the United States of America. Three main autistic-identity constructs emerged from the data: autism diagnosis, autistic agency and normality. Normality was found to be at the heart of a dialectic negotiation with the social world: rejection of the neurotypical perception of normality and adoption of autistic identity as identity of difference. Autistic diagnosis was found to be a formative construct for autistic identity. Autistic agency was found to be at the core of autistic identity, while self-stimulation- related behaviors were found to be at the core of the perception of autistic identity. Overall, the study’s findings demonstrate that the Internet has revolutionized the ability of autistic persons to communicate, create communities, promote social change through activism and communicate with the non-autistic world. In particular, the Internet has played a crucial role in the emergence of an international autistic community as well as the shaping of autistic identity at both iii | Page the community and individual level. The personal space of the blog provides an arena in which autistic persons can explore their autistic selves and negotiate their identity with followers and the social world. Blogs create a safe space in which autistic persons can redefine themselves using their own voice and construct an identity as an individual and member of a community. In this light, the Internet and blogging in particular are radically reshaping contemporary thinking about autism, moving away from the biomedical conceptualization of autism as "deficiency" or "deficit" toward a socio-cultural view of autism as a manifestation of neurodiversity. The study offers several contributions to our evolving understanding of autistic identity. First, this is one of the first studies to explore autistic identity in the blogosphere, as previous communication studies focused on community platforms such as forums, chatrooms and community websites. Second, ground in communication theory, and in particular the work of Manuel Castells and James Carey, this study provides a conceptual framework that helps explain the roles the Internet and social media play in evolutions of autistic identity. Finally, the study demonstrates that communication approaches provide an important basis for investigating identity negotiation processes with the social world through blogging. iv | Page ACKNOWLEDGEMENTS I would like to thank my advisors for giving me the opportunity to pursue my graduate studies. To Dr Jung Younbo, who introduced me to the use of communication theories in autism- related research and to great possibilities in my scholarly work; and to Dr Natalie Pang, for fruitful discussions that enabled my scholarly work and opened new intellectual doors for me, particularly in the area of communication and social change. I also would like to thank the participants of the study for opening my eyes, forcing me to self-reflect on many assumptions I took for granted and to challenge me intellectually. During the research, I met wonderful people and learned a lot about communication, about greater varieties of social interactions and about friendship. I would like to express my gratitude to Nanyang Technological University for providing me a scholarship to support my graduate degree, and to the faculty, students and staff who made it possible for me to pursue a degree in an area so close to my heart. Finally, I would like to thank my husband, Chuck, and my son Nick, for providing emotional and intellectual support throughout my research. This thesis is dedicated to my mother, Michal, and my late father, David. I would have not been who I am without their love, support, values and intellectual curiosity. v | Page TABLE OF CONTENTS ABSTRACT ................................................................................................................................... iii ACKNOWLEDGEMENTS ............................................................................................................ v PROLOGUE ................................................................................................................................... 1 CHAPTER ONE ........................................................................................................................... 14 INTRODUCTION ........................................................................................................................ 14 1.1. Studying Online Autistic Identity Construction ............................................................. 18 CHAPTER TWO .......................................................................................................................... 23 ALTERNATIVE APPROACHES TO THE STUDY OF AUTISM ............................................ 23 2.1. The Biomedical Approach ............................................................................................. 23 2.2. The Anthropological Approach to Autism Theories and Research ............................... 30 2.3. Disability Studies: The Social and Affirmation Models ................................................ 32 2.3.1. Social Model of Disability ...................................................................................... 34 2.3.2. The Affirmative Model of Disabilities ................................................................... 35 CHAPTER THREE ...................................................................................................................... 38 EVOLUTION OF AUTISTIC IDENTITY VIA AUTISTIC CULTURE, NEURODIVERSITY MOVEMENT AND ONLINE AUTISTIC COMMUNITIES ..................................................... 38 3.1. Autistic Culture .............................................................................................................. 38 3.2. Neurodiversity and the Rise of the Neurodiversity Movement ...................................... 42 3.3. Neurodiversity and Autistic Identity .............................................................................. 46 3.4. Internet and Autism ........................................................................................................ 49 3.5. Internet and Autistic Culture .......................................................................................... 52 CHAPTER FOUR ......................................................................................................................... 54 COMMUNICATION APPROACHES, AUTISTIC IDENTITY AND BLOGS ......................... 54 4.1. Three Approaches to Study of Autism Communication ................................................ 55 4.1.1. Cultural Approach to Communication .................................................................... 55 4.1.2. Convergence and Participatory Cultures ................................................................ 58 vi | Page 4.1.3. Network Society and Sociality................................................................................ 59 4.2. Contributions of the Internet to Autistic Culture & Identity Development ................... 64 4.2.1. Affordances, Autism and Identity ........................................................................... 64 4.3. Collective Individualism: Bloggers and Community ..................................................... 67 4.4. The Autistic Space ......................................................................................................... 70 4.5. Blogging the Autistic Self: On Voice, Exploration and Identity ................................... 76 CHAPTER FIVE .........................................................................................................................
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