Perspectives of autistic adolescent girls and women on the determinants of their mental health and social and emotional well-being: A systematic review and thematic synthesis of lived experience

Abstract

Autistic girls and women experience more mental health difficulties and poorer well-being than their non-autistic peers. Little emphasis has been placed on the perspectives of the girls and women within the literature. This review aims to provide an overview of the factors that impact autistic females’ emotional and social well-being and mental health, as described in self-report qualitative studies. The protocol for the present review was pre-registered on PROSPERO (CRD42020184983), and this article follows Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PsycInfo, Academic Search Complete and MEDLINE were systematically searched using a pre-defined search string. This yielded 877 unique records, which were systematically screened by two reviewers, resulting in 52 eligible studies. Structured data extraction and quality appraisal were completed. The present review presents the perspectives of 973 autistic females aged 13–70+. Thematic synthesis identified three themes and nine subthemes. Our findings suggest that autistic girls’ and women’s experiences can be conceptualised within a social model, where biological and psychological factors (‘The Autistic Neurotype’) are experienced through the lens of social factors (‘The Neurotypical World’ and ‘Stigma’), together shaping well-being and mental health outcomes.

Lay abstract

Difficulties with mental health and low levels of well-being are more common among autistic girls and women than non-autistic people, but we do not fully understand why. Research does not focus enough on what autistic girls and women could tell us about this. This review aims to summarise the studies where autistic girls and women explain things that affect their mental health and well-being to help us understand how to prevent these difficulties from developing. Three research databases were searched to find possibly relevant studies. There were 877 studies found, which two researchers screened according to particular criteria. They found 52 studies that could be included in this review. One researcher evaluated the quality of these studies and extracted the key information from them. This review summarises the views of 973 autistic girls and women aged between 13 and 70+. The findings from the 52 studies were analysed, and we found many factors that affect the mental health and well-being of autistic girls and women. These factors fall into two categories: (1) difficulties living in a world not designed for autistic people and (2) the impact of stigma due to being autistic.