Talking About Autism and Exploring Autistic Identities

Abstract

Autism is often framed using a deficit lens with ableist beliefs and medical model perspectives promoting the curing, treatment, or camouflaging of autistic characteristics. This contributes to poor outcomes experienced by many within the autistic community, including but not limited to victimization at higher rates (Fisher & Lounds Taylor, 2016; Nansel et al., 2001), lower satisfaction with quality of life in work, education, and relationships (Barneveld et al., 2014), suicidal ideation at higher frequencies (Mayes et al., 2013), and low self-esteem and high depression and anxiety (Cooper et al., 2017). Increased efforts are necessary to better understand how to support positive autistic identity development. This dissertation is comprised of three papers outlined below, aimed at exploring autistic identity. Paper 1 sought to analyze how autistic adults without a formal autism diagnosis construct autistic identities in the narratives they tell about disclosure or talking to other about being autistic. Through interviewing using participant-preferred modalities, narratives were elicited from 15 self-identified autistic adults. Narratives were thematically and then discursively examined using Bamberg’s 3-level model of positioning (Bamberg, 1997). Analysis showed that positioning techniques like reported speech, double-voiced discourse, and juxtaposition of characters were used by participants to reveal doubt experienced in self-identifying, claim autistic membership, and assert autism expertise. For autistic adults without formal diagnosis, discussing autism and sharing their autistic identification can be a challenging experience. Understanding how these exchanges are narrated can offer insight on how to better support and affirm self-identified autistic adults. Paper 2 examined the experiences of autistic adolescents and their caregivers of engaging in talk about autism. Adopting a multiperspectival interpretative phenomenological analytic (IPA) approach, 3 parent-child dyads were recruited and individually interviewed. Parents and adolescents were treated as separate participant groups and analysis of individual interviews was followed by cross-case analysis to identify group experiential themes. Adolescents found that conversations with their mothers impacted their autistic identity by strengthening perceived areas of difficulty related to autism and helping them to better understand themselves and conceptualizing autism. Caregivers noted that conversations about autism with their child felt natural, were spaces to frame autism in particular ways, and were opportunities to guide them through challenging social situations and offer support. This IPA study contributes to autism research in describing the psychosocial experience of autism-related talk between parent and child, appreciating the multiple perspectives involved in these interactions. Using hierarchical regression and mediation models, Paper 3 identified the relationships between (a) awareness and knowledge about autism, (b) orientation to neurodiversity perspectives, (c) level of outness, (d) autism-related stigma consciousness, (e) autistic identity, and (f) mental well-being of autistic adults. A sample of 169 participants completed an online survey comprised of measures indexing these constructs. Autism awareness and knowledge, alignment with neurodiversity perspectives, outness, and stigma consciousness were predictive of autistic identity when controlling for gender, sexuality, and number of years knowing about autistic status. When entered into the regression model together, only orientation to neurodiversity perspectives uniquely predicted autistic identity. Additionally, results showed that autistic identity mediated the relationship between stigma-related consciousness and mental wellbeing. This work offers direction for promoting positive autistic identity development.