Rethinking Autism, Communication, and Community Involvement: Exploring Involvement in Online Communities, Communication Preference, Autistic Identity, and Self-Determination

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 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