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Rethinking Autism, Communication, and Community Portland State University PDXScholar Dissertations and Theses Dissertations and Theses Winter 3-31-2015 Rethinking Autism, Communication, and Community Involvement: Exploring Involvement in Online Communities, Communication Preference, Autistic Identity, and Self-Determination Colleen Anne Kidney Portland State University Follow this and additional works at: https://pdxscholar.library.pdx.edu/open_access_etds Part of the Psychology Commons Let us know how access to this document benefits ou.y Recommended Citation Kidney, Colleen Anne, "Rethinking Autism, Communication, and Community Involvement: Exploring Involvement in Online Communities, Communication Preference, Autistic Identity, and Self-Determination" (2015). Dissertations and Theses. Paper 2224. https://doi.org/10.15760/etd.2221 This Dissertation is brought to you for free and open access. It has been accepted for inclusion in Dissertations and Theses by an authorized administrator of PDXScholar. Please contact us if we can make this document more accessible: [email protected]. Rethinking Autism, Communication, and Community Involvement: Exploring Involvement in Online Communities, Communication Preference, Autistic Identity, and Self-Determination by Colleen Anne Kidney A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Applied Psychology Dissertation Committee: Eric Mankowski, Chair Katherine E. McDonald Greg Townley Christina Nicolaidis Laurie Powers Portland State University 2015 i Abstract Autistic individuals experience marginalization and stigmatization, and are often not connected to mainstream services or organizations fostering peer relationships (Boundy, 2008; Jaarsma & Welin, 2012; Robertson, 2010). Therefore, the accomplishments of the online Autistic community in building a community for self- advocacy, peer-support, friendships, and identity development (Brownlow & O’Dell, 2006; Kidney, 2012) are important to recognize, empirically examine, and promote (Blume, 1997a; Davidson, 2008). Utilizing a community-based participatory research approach (CBPR; Israel, Schulz, Parker, & Becker, 1998) the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE; www.aaspire.org) conducted the AASPIRE Internet Use, Community, and Well-Being Study, and collected data from 151 autistic adults and 173 non-autistic adults. The current study utilized data from the AASPIRE Internet Use, Community, and Well-Being Study on involvement in the online Autistic community, communication preferences, Autistic identity, and self- determination. The aims and rationale for the study were to contribute to the small body of quantitative literature on the online Autistic community, including expanding on findings that support positive outcomes of involvement in the online Autistic community (Kidney, 2012), and whether communication preference influences the relationships. The study also sought to examine the fit of an integrated model of associations among involvement in the online Autistic community, Autistic Identity, and self-determination in autistic adults who do and do not prefer online communication. Additionally, the ii study aimed to promote positive Autistic research and the voices of autistic participants and CBPR partners by challenging common misperceptions about autistic individuals and community/social interactions, understand the impact of communication preference, and inform policy and education designed for autistic individuals. The study used data to develop a multi-dimensional construct of involvement in the online community as well as explore the Autistic Identity Scale. The main findings included positive relationships between involvement in the online Autistic community and Autistic identity (r=.33, p<.01), as well as between involvement and self- determination (r=.38, p<.01) in autistic adults. Exploratory analyses yielded mixed results in the cross-sectional sample that was relatively limited in demographic diversity and small considering the number and type of analyses (n=324). Main findings include no moderating impact of preference to communicate online or population type (autistic or non-autistic) on the significant relationships between (1) involvement in the online community and self-determination or (2) involvement in the online community and Autistic identity. However, exploring the relationships among the variables with structural equation modeling, analyses indicated that no significant relationship exists between involvement in the online Autistic community and self-determination in autistic adults who do not prefer online communication. Findings indicate the need for further research on the complex impact of communication preference in larger samples of autistic adults. Despite sample limitations and mixed results from exploratory analyses, the findings mostly support the associations of involvement in the online Autistic community with Autistic identity and iii self-determination. The discussion addresses implications of the findings for theory, research, and action. For example, findings may influence how autistic individuals are provided education about and access to new media for fostering community, or lead to the development of online interventions or techniques for the promotion of positive outcomes in autistic individuals. iv Acknowledgments The study was funded by Portland State University’s Faculty Enhancement Grant to Dr. McDonald. The Burton Blatt Institute and Michael Morris provided additional support for the involvement of community partners. I would like to express my deep gratitude to the AASPIRE Well-Being team members, including Christina Nicolaidis, MD MPH, Dora Raymaker, MS, Katherine McDonald, PhD, Elesia Ashkenasky, Sebastian Dern, Cody Bosclair, PhD, Amanda Baggs, Steven Kapp, Angie Mejia, MA, Ren Morrill, and Marcie Tedlow. I’d also like to acknowledge and thank the other Gateway Council members for their input through the development of the AASPIRE Internet Use, Community, and Well-Being Study, Morton Gernsbacher, PhD and Jennifer Stevenson, PhD. Lastly, I would like to thank my dissertation committee members: Eric Mankowski, PhD, Christina Nicolaidis, MD, MPH, Greg Townley, PhD, Laurie Powers, PhD, and especially my advisor, Katherine McDonald, PhD, who has pushed my ideas and persistently encouraged me throughout the dissertation process. v Table of Contents Abstract ................................................................................................................................ i Acknowledgments............................................................................................................... iv List of Tables ...................................................................................................................... vii List of Figures .................................................................................................................... viii CHAPTER I: Introduction and Overview .............................................................................. 1 Study Aims and Rationale ............................................................................................... 6 CHAPTER II: Context of the Study ..................................................................................... 13 The Academic Autistic Spectrum Partnership in Research and Education ................... 14 Study Approaches ......................................................................................................... 17 Defining and Characterizing Autism in the Medical Model .......................................... 27 The Disability Rights Movement and the Socio-Ecological Model of Disability ............ 31 The Autistic Self-Advocacy Movement and the Autistic Community ........................... 38 Re-Defining and Characterizing Autism within the Self-Advocacy Movement ............ 55 CHAPTER III: Review of the Literature .............................................................................. 60 Involvement in the Online Autistic Community ............................................................ 60 Frequency of involvement in online communities. ...................................................... 69 Communication Preferences in the Online Autistic Community .................................. 80 Autistic Identity ............................................................................................................. 86 Self-Determination ........................................................................................................ 93 Involvement in the Online Autistic Community, Identity, Community, and Well-Being ..................................................................................................................................... 108 Research Questions and Hypotheses .......................................................................... 117 CHAPTER IV: Methodology ............................................................................................. 124 Research Context ........................................................................................................ 124 Study Development ..................................................................................................... 125 Measures ..................................................................................................................... 127 Participants .................................................................................................................
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