A Critical Review of Academic Literature Constructing Well-Being in Autistic Adults
Gary Yu Hin Lam, Sujay Sabnis, María Migueliz Valcarlos, Jennifer R. Wolgemuth
Abstract
The emergence of critical autism studies has fueled efforts to interrogate how autistic people are studied and described in academic literature. While there is a call for research that promotes better well-being for autistic people, little attention has been paid to the concept of well-being itself. Just as the medical model limits critical understandings of autism in the academic literature, so too may psychological accounts of well-being limit, rather than expand, possibilities of living a good life for autistic people. The purpose of this critical review was to identify and critique how well-being in autistic adults is constructed in research. Based on a systematic search of peer-reviewed empirical research published from 2013 to 2020, we identified 63 articles that involved direct data collection with autistic adults and focused on well-being constructs such as quality of life, life satisfaction, and happiness. We examined the articles using the techniques of critical discourse analysis to discern assumptions underlying constructions of autistic well-being, with special attention to the axiological and teleological contributions of autistic perspectives in the research and writing processes. We identified several approaches through which the literature constructed autistic well-being: (1) well-being as an objective uncontested variable, (2) well-being as personal and not fixed, (3) well-being that warrants a specific measure for the autistic population, and (4) well-being as a situated account that privileges and centers autistic people's perspectives. We subject these accounts to critical analysis, pointing to how they limit and open life possibilities for autistic people. We recommend that researchers and practitioners critically reflect on how they engage autistic adults and use their input to create works that support well-being in ways that are meaningful and ethical to autistic adults, as well as do justice to changing broader narratives of autism in research and society. Lay summary: We recommend that researchers critically reflect on how they engage autistic adults and use their input in research. Promoting well-being needs to be meaningful and ethical to autistic adults. Research also needs to advocate for social justice to challenge how the majority in society understands or misunderstands autistic people.