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: Why was this study done?: More autistic people and researchers have advocated to study autism in critical and positive ways. While it is important to promote better well-being for autistic people, little is known about what well-being actually means to them.What was the purpose of this study?: The purpose of our critical review was to identify how the concept of well-being in autistic people is understood and described in academic literature. We also critiqued how well-being research considers the input and perspectives of autistic adults.What did we do?: We systematically searched for research articles published between 2013 and 2020. We identified 63 articles that involved direct data collection with autistic adults and focused on well-being and related concepts such as quality of life, life satisfaction, and happiness. We analyzed the articles by focusing on how they used language to describe well-being in autistic adults and how they valued the data collected from these adults.What did we find?: We identified several ways that article authors described their understanding of autistic well-being: (1) well-being as an objective and uncontested object, (2) well-being is personal and can vary in nature, (3) well-being warrants a measure that considers opinions of autistic people, and (4) well-being as very specific to autistic people's subjective perspectives. We critically analyzed how these different understandings limit or open life possibilities for autistic people's well-being.How will this work help autistic people?: 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.
Keywords: adults; autism; construct; critical autism studies; discourse; well-being.
Copyright 2021, Mary Ann Liebert, Inc., publishers.