Does genetic testing impact stigma in autism: A scoping review

Public stigma is a society’s negative attitude toward a person or groups of people, self-stigma relates to the internalisation of these negative attitudes, and affiliate stigma is experienced by those associated with a stigmatised group. Both autism and genetic testing results can be stigmatised. This scoping review explored relationships between genetic testing and stigma in autism, to understand any perceived positive or negative effects. Embase Classic, and APA PsycINFO via Ovid databases were searched on May 30th, 2023, and updated January 9th, 2025. Included articles related to experiences of or attitudes toward genetic testing or genetic counselling, and involved autistic people, people with autism-related genetic conditions, or their parents, and explored stigma and stigma-related factors. Twenty-five articles were included: three included autistic adults and twenty-two included parents of autistic people or those with autism-related genetic conditions. Stigma-related factors included both autistic people’s and parent concerns surrounding social and insurance discrimination, parental experiences of isolation and ignorance in relation to the healthcare system, and perceptions of labelling. Findings were mixed regarding self-blame, worry and stress among autistic adults. Some parents reported an increase in worry and stress relating to discrimination, while others reported relief related to genetic test results and enhanced biological understanding. This review highlights the lack of focus on perspectives of autistic adolescents and individuals with autism-related genetic conditions, regarding genetic testing impacts on stigma. Future research should address these gaps to inform more supportive clinical and societal practices.