Copyright By Lydia Nicole Bierer 2013 The Dissertation Committee for Lydia N. Bierer certifies that this is the approved version of the following dissertation: Online Community Building by Autistic Adults Committee: ____________________________________ Diane L. Schallert, Supervisor ____________________________________ Marilla D. Svinicki, ____________________________________ Claire Ellen Weinstein ____________________________________ Edmund T. Emmer ____________________________________ Mary Jo Worthy Online Community Building by Autistic Adults by Lydia Nicole Bierer, B.A; M.A. Dissertation Presented to the Faculty of the Graduate School of The University of Texas at Austin in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy The University of Texas at Austin May 2013 Dedication I dedicate this in loving memory of my mom Leila Bierer who left us much too soon last Spring (2012). My mom was my first teacher both in ABA therapy and in life. Many of the things that she told me as I was growing up I didn’t always believe, but now that I have the benefit of time, I can see that she was right all along. It is true that through faith, perseverance and a little bit of luck, anything is possible, even a dissertation. Acknowledgements I would like to acknowledge my committee for all of their tireless work in helping me make this document as good as it could be without driving us all crazy. I would also like to acknowledge my classmates who helped me through the tough times, particularly with all of those weekend and after hours study sessions for statistics classes. I’ll never forget you. Finally, I would like to acknowledge all of the researchers before me and who will come after me. v Online Community Building by Autistic Adults Lydia Nicole Bierer, Ph.D. The University of Texas at Austin, 2013 Supervisor: Diane L. Schallert One diagnostic criterion to identify individuals as having an autism spectrum disorder (ASD) is that their communication patterns, social reciprocity, and interactional competence show qualitative impairment (American Psychiatric Association, 2000). And yet, my experience as an individual who was once diagnosed as ASD and my investigations of Internet websites run by and for autistic individuals led me to see that individuals who identify as ASD are not only interested in communicating with others but highly articulate in self-advocating through the affordances of online communication. My research was focused on exploring the communicative experiences of individuals who participated in two websites designed by and for autistic individuals as a means of self-advocacy, WrongPlanet and AspiesforFreedom. The method used to study the two websites was that of participant-observer. Having joined the online groups by introducing myself, I was able to peruse archived postings and current threads available on the websites. I analyzed threads of postings for themes being discussed and for features showing evidence of what Herring (2004) described as online community. Some of the postings were triangulated by interviewing participants. These interviews revealed more personal information about how one vi chooses to self-advocate and create community online. Results indicated that the forum posts of these two autistic-run websites demonstrated evidence of shared community and self-advocacy through the topics discussed. The autistic individuals I studied seemed to want to be seen as having a difference not a deficit. They acknowledged their struggles, but posited that individuals with ASD have strengths that are uncommon and are currently being under-utilized by society. Their use of the Internet demonstrates how autistic individuals are capable of communicating about a wide variety of topics, and are capable of contributing to the conversation about what makes them similar and different from those whom they call Neurotypical . The significance of this study is that insights I present have a different validity than other studies of autistic individuals conducted by non-autistic researchers. Also, by challenging stereotypes of the capabilities of autistic individuals, a path is created whereby all may benefit from the strengths, talents, and insights they are able to provide. vii Table Of Contents Chapter 1: Introduction ................................................................................................. 1 Prevalence of Autism...........................................................................................2 The Construct of Neurodiversity........................................................................ 5 Autism and The Internet.....................................................................................7 Researcher Disclosure.......................................................................................10 Rationale and Research Questions....................................................................12 Chapter 2: Literature Review.......................................................................................15 Autism...............................................................................................................16 Political Activism Associated with Autism......................................................28 Computer-Mediated Communication................................................................41 Ethical and Philosophical Issues Related to Research with Special Populations and CMC.......................................................................................52 Chapter 3: Method.......................................................................................................59 Pilot Study.........................................................................................................60 Main Study........................................................................................................65 Data Analysis....................................................................................................71 Data Trustworthiness........................................................................................75 Descriptive Statistics.........................................................................................76 Timeline.............................................................................................................86 viii Chapter 4: Results........................................................................................................87 Research Question 1.........................................................................................87 Research Question 2.........................................................................................96 Research Question 3.......................................................................................109 Chapter 5: Discussion................................................................................................119 Findings Connected to the Existing Literature...............................................119 Limitations of the Study.................................................................................127 Implications for Practitioners.........................................................................128 Further Research.............................................................................................131 Conclusion......................................................................................................132 References..................................................................................................................133 ix List of Tables Table 2.1....The DSM criteria for a diagnosis of Autistic Disorder..........................17 Table 2.2....The DSM criteria for a diagnosis of Asperger’s Disorder.....................18 Table 2.3....Behavioral Differences of Autistic and Normal Infants........................20 Table 3.1....Example of Coding table ......................................................................72 Table 3.2....Descriptive statistics of posters for both websites.................................76 Table 3.3....Posters' ASD identification...................................................................77 Table 3.4....Number of Postings and Posters for Threads For Wrongplanet............80 Table 3.5....Number of Postings and Posters for Threads For Aspiesforfreedom....80 Table 4.1....Wrongplanet forum topics.....................................................................87 Table 4.2....Aspiesforfreedom forum topics.............................................................89 Table 4.3....ASD related thread titles grouped into categories.................................91 Table 4.4....General topic thread titles grouped into categories...............................95 Table 4.5....Discourse practice used by posters for thread about lack of encouragement for graduate studies.............................................................99 Table 4.6....Discourse practice used by posters for the thread "why do you have meltdowns?"...............................................................................................100 Table 4.7....Discourse practices used by posters for the thread about getting a diagnosis......................................................................................101 Table 4.8....Discourse practices used by posters for the thread about being rejected for a job.........................................................................................101 x Table 4.9....Discourse