Autistic well-being: A scoping review of scientific studies from a neurodiversity-affirmative perspective

Authors

Abstract

Background Historically, autism research has focused on the overrepresentation of physical and mental health problems and decreased psychological well-being in autistic people without intellectual impairment. There is a paucity of studies emphasizing what positively contributes to the well-being of autistic people. In line with a recent shift toward investigating autistic health more comprehensively, we conducted a scoping review to map emerging data on autistic well-being within a biopsychosocial context. Methods A Lived Experience Advisory Panel coproduced the review question. The research was collated using Preferred Items for Systematic Reviews and Meta-analyses guidelines for scoping reviews (PRISMA-ScR) with predefined selection criteria. Research based on the deficit-based view of autism and not within the core principles of the neurodiversity-affirmative movement was excluded. Results We collated 89 studies, with biological (N = 8), psychological (N = 70), and social (N = 61) factors. Alongside an increase in affirmation-focused outputs, we identified several themes: ‘Impact of Diagnosis and Self-Identity’, ‘Self-empowering Characteristics’, ‘Cognition’, ‘Role of the Wider Community’, ‘Role of Relationships and Forms of Support’, and ‘Social Adaptations and Lessons from COVID-19’. Conclusions While neurodiversity-affirmative perspectives on autistic well-being are increasingly recognized as an important research area, there is a need for a more stringent exploration of interlinking biopsychosocial determinants. A focused approach within future research will enhance understanding of the promotion of autistic well-being. Lay abstract A lot of autism research focuses on the negative aspects of being autistic, for example, autistic people have a shorter life expectancy and are more likely to have physical and mental health conditions. There is not much research on what improves autistic well-being and quality of life. In this article, we summarize research that looks at positive factors which contribute to autistic well-being. We first asked four autistic adults which questions they think are most important to ask about autistic well-being. Together, we decided that we would look for research that is based on a neurodiversity-affirmative perspective and does not view autism as a deficit. We also decided we would look for biological, psychological, and social factors that positively contribute to autistic well-being for autistic people of all ages. We then used a specific method for searching different databases to see what other researchers had found that could answer our question. We found 89 studies that looked at biopsychosocial factors contributing to autistic well-being. Most of these were on psychological and social factors, with only a few on biological factors. We found that meaningful social connections, forms of support, and psychological factors like individual characteristics contributed to autistic well-being. Overall, we found that autistic well-being is a relatively new interest in autism research and that we need more research in the future to work out how we can improve the quality of life of autistic people of all ages.

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