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Communicating Autism on the Internet the Emerging of Neurodiversity Movement in Indonesia

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School of Media, Creative Arts and Social Inquiry Communicating Autism on the Internet The Emerging of Neurodiversity Movement in Indonesia Hersinta 0000-0001-5050-8820 This thesis is presented for the degree of Doctor of Philosophy of Curtin University October 2020 Declaration To the best of my knowledge and belief this thesis contains no material previously published by any other person except where due acknowledgment has been made. This thesis contains no material which has been accepted for the award of any other degree or diploma in any university. Hersinta Date: 4 October 2020 ii Abstract The ways Autistics use the internet for self-expression and social inclusion has received significant academic attention in recent years. Brownlow and O’Dell (2006) for example, explore how people on the spectrum use online discussion groups to construct their voice while Davidson (2008) investigates the impacts of the internet for virtual communication and cultural expression among Autistics. Judy Singer coined the term “neurodiversity” for recognising Autism as a “variety of human wiring” – this later became closely associated with the Autistic self-advocacy movement (Davidson & Orsini, 2013). This neurodiversity movement influences the way Autism is perceived. Autism is not only a medical label that marks a person’s biological psychiatric condition, but it also becomes a socially, culturally, and historically constructed category of disability. To date, investigations of the use of the internet and Autistics’ presence has not been covered before in Indonesian studies about Autism. This doctoral thesis aims to provide a study of Autism and advocacy movement on the internet from Indonesian cultural context, particularly to fill the growing need of broader cross-cultural literature in these areas of study. This thesis applies a critical disability studies approach to examine the rise of an Autistic-focussed online presence in Indonesia – particularly by looking at the idea of Autism as being socially constructed. The voices of various stakeholders are included in the discussion of this thesis, from the public voice on Twitter represented largely by the news media and Autism organisations, to the voices of Autistics and parents. By using textual analysis of Twitter messages and in-depth interviews with Autistics and non-Autistics, this thesis has found that the way Autism is interpreted in Indonesia is still largely related to traditional or medical approaches. It found that in Indonesia, Autism has been represented mostly by non-Autistic people, including parents who have the first-hand experience in engaging with Autistic individuals. Beyond the medical approach to understand Autism, this thesis also found that online platforms have opened the way for some Autistics in Indonesia to understand their Autism as part of their valuable, politicized identities. What is significant is that the internet plays a critical role in providing the platform for Autistics to share their self- iii narratives. Those self-narratives are likely to contribute in the informative stage, although not yet contribute to the transformative interpretations of Autism in Indonesia. The thesis concludes that Autism culture on the internet, in the form of the neurodiversity movement, provides a form of self-awareness among some Autistics in this study – to view themselves beyond the medical definition of Autism that perceives them as ‘disabled’ by a mainstream or neurotypical culture. iv Table of Contents Declaration ............................................................................................................. ii Abstract ............................................................................................................ iii Table of Contents ...................................................................................................... v List of Figures ......................................................................................................... viii List of Tables ............................................................................................................ ix Abbreviations ............................................................................................................ x List of Publications .................................................................................................. xii Acknowledgements ................................................................................................. xiv Dedication .......................................................................................................... xvi Chapter 1. Introduction ........................................................................................... 1 1.1. Background of the study ............................................................................... 1 1.1.1. The internet as a new space for advocacy or “neurodiversity” ...................... 3 1.1.2. Autism and the online movement in Indonesia .............................................. 7 1.2. Significance of the study ............................................................................. 10 1.3. Research questions and the context of the study ........................................ 11 1.4. Structure of the thesis ........................................................................................ 13 Chapter 2. Critical concepts underlying study .................................................... 16 2.1. Introduction ........................................................................................................ 16 2.2. The concept of Neurodiversity and its surrounding controversy ....................... 17 2.3. Critical disability studies .................................................................................... 21 2.4. Critical Autism studies and the social construction of Autism .......................... 26 2.5. The internet, social media, and disability ........................................................... 29 2.6. The potential use of the internet and social media for Autistics ........................ 31 2.7. Conclusion ......................................................................................................... 33 Chapter 3. Methodology ........................................................................................ 35 3.1. Chosen research strategies ................................................................................. 35 3.1.1. Case studies as a research strategy ............................................................... 35 3.1.2. The grounded theory approach for synthesizing strategy ............................. 37 3.2. Data collection procedures ................................................................................. 39 v Chapter 4. Autism awareness and the online advocacy movement ................... 42 4.1. Introduction ........................................................................................................ 42 4.2. Definitions and historical aspect of Autism ....................................................... 42 4.3. The rise of parental Autism movement .............................................................. 45 4.4. Autistic activism: The emerging of self-advocacy and the neurodiversity movement .................................................................................................... 46 4.5. The internet as a platform for disability movements and advocacies in Indonesia ..................................................................................................... 50 Chapter 5. Autism in Indonesia ............................................................................ 55 5.1. Introduction ........................................................................................................ 55 5.2. How Autism is situated in Indonesia ................................................................. 56 5.3. Cultural and societal impacts of Autism: The stigma ........................................ 61 5.4. Autism representation in Indonesian media ....................................................... 64 5.5. Parental Autism movement in Indonesia ........................................................... 70 5.6. Autism self-advocacy in Indonesia .................................................................... 72 Chapter 6. Framing on Autism ............................................................................. 75 6.1. Introduction ........................................................................................................ 75 6.2. The Traditional and Progressive Models of Disability ...................................... 75 6.3. Media framing on Autism .................................................................................. 78 6.4. Framing on Twitter ............................................................................................ 82 Chapter 7. Tweeting Autism in Indonesia: Investigating the Dominant Frames .............................................................................................. 86 7.1. Introduction ........................................................................................................ 86 7.2. Data collection procedure .................................................................................. 87 7.3. Data analysis ................................................................................................... 89 7.3.1. Main issues about Autism discussed on Indonesian Twitter .......................
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