Embodied, Intelligent and Empathic: Reframing Autism Using Insider Perspectives

Abstract

Background: To date, academic and clinical conceptualizations of autism have been built on research that reflects the perspectives of researchers and scholars, to the exclusion of the perspectives of autistic insiders. Objectives: To build deeper understanding of autism, especially its associated characteristics and behaviours, by examining the perspectives of people who identify as autistic. Research Process: Adopting a descriptive qualitative approach, I conducted three sequential studies. In the first study, I used inductive thematic analysis of memoirs for an early exploration of insider perspectives and identification of phenomena of interest. Through this, I identified experiences of being misjudged and embodied autism as primary phenomena of interest. In the second study, I used directed content analysis of blogs to pursue a deepened understanding of embodied autism. In the third study, I used the dataset from Study #2 and applied inductive thematic analysis to the blog content to more closely examine insider framings of autism. Results: The informants in this research conceptualize autism and explain its characteristic behaviours in ways that are fundamentally different from the dominant framing of autism. When explaining their autistic behaviours and functional challenges, the informants highlight embodied issues such as difficulty controlling movements and maintaining an adaptive level of arousal. The informants frequently experience being misjudged and misunderstood and express desire for a shift in the dominant framing of autism to better match their perspectives and needs as autistic insiders. Conclusions: Together these studies offer an insider-informed framing of autism that is more embodied, intelligent, empathic, and positive than depictions of autism in dominant literature. This research highlights the feasibility of insider-informed autism research and its potential to enrich autism science and service.