Quality of life outcomes associated with stigma in autistic adults and their families: a systematic review.

Background: Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterized by impaired communication and repetitive and/or restricted behaviors or interests. Autistic adults face stigma in several forms including discrimination, negative judgement and stereotyping, which may contribute to poorer quality of life (QoL) outcomes. Whilst the impact of stigma on QoL in autistic pediatric populations have been extensively studied, autistic adults and their caregivers represent a gap in the literature. Aims: To examine different types of stigma faced by autistic adults and their family/caregivers and its impact on their quality of life, guided by World Health Organization QoL (WHOQOL) domains. which include physical health, psychological health, social relationships and environment. Methods: A systematic literature search was conducted in APA PsycInfo, Ovid MEDLINE (R) and Embase for keywords related to ASD and stigma. Studies that were eligible were peer reviewed English articles from 2013 onwards including autistic adults or their caregivers that examined at least one subtype of stigma as defined by this review. Stigma subtypes explored included internalized, public, structural, intersectional and affiliate stigma. Results: A total of 53 studies were included. Experiences of autism related stigma overwhelmingly led to poor quality of life outcomes across mental and physical health domains, relationships and in employment, social and healthcare contexts. Internalized stigma emerged after repeated exposure to experiences of public and structural stigma, resulting in reduced self-efficacy, lowered help seeking behaviors and increased pressure to mask autistic symptoms. Public stigma was largely associated with social exclusion, exacerbating feelings of shame and low self-esteem. Structural stigma, especially in healthcare and workplace environments, reinforced stigma related trauma and reduced participation and engagement. Affiliate stigma placed further strain on family and relationships, brewing resentment and alienation within families. Intersectional stigma across many marginalized identities such as gender, ethnicity and sexuality, compounded the damaging effects of autism related stigma. Conclusion: Autism related stigma acts at structural, societal and individual levels, contributing to poor QoL outcomes for autistic adults and their family/caregivers. Future studies should consolidate causal relationships between stigma and QoL, while combatting stigma at multiple levels.