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Review
. 2022 Mar 1;4(1):76-91.
doi: 10.1089/aut.2021.0005. Epub 2022 Mar 9.

Understanding Stigma in Autism: A Narrative Review and Theoretical Model

Alice Turnock  1 , Kate Langley  2 , Catherine R G Jones  2
Affiliations
Review

Understanding Stigma in Autism: A Narrative Review and Theoretical Model

Alice Turnock et al. Autism Adulthood. .

Abstract

The experience of stigma by autistic people is relatively understudied, despite contributing to a range of poor outcomes and having an overarching impact on well-being. The current review of the literature synthesizes research to determine what is currently known and presents a theoretical model of autism stigma. Autism stigma is primarily influenced by a public and professional understanding of autism in combination with interpretation of visible autistic traits. Moderating factors include the quality and quantity of contact with autistic people, cultural factors, sex and gender, individual differences, and diagnostic disclosure. Stigma can reduce well-being as well as increase the presence of camouflaging behaviors, which mask autistic traits. Caregivers of autistic people can experience stigma by association, that is, affiliate stigma, which can impact their own well-being. A variety of interventions and approaches to reduce stigma are discussed, including "autism friendly" spaces, positive media representation, educational and psychosocial training for the public and professionals, as well as cultural and systemic shifts that foster inclusivity and recognize neurodiversity.

Keywords: attitudes; autism; discrimination; neurodiversity; stigma; well-being.

Plain language summary

Why is this topic important?: Autistic people are known to experience stigma. This means that they can face ignorance, prejudice, and discrimination.

What was the purpose of this article?: The purpose of the article was to review research on autism stigma. We wanted to better understand autism stigma. We looked at why autistic people and their families experienced stigma. We also looked at what factors influenced stigma and the impact of stigma. Last, we discussed how to reduce stigma for autistic people and their families.

What do the authors conclude?: We summarized the research findings into a model. Autism stigma is affected by people's understanding of autism and by visible autistic traits. Poor understanding of autism means that visible autistic traits may be viewed negatively. Certain factors influence the amount of stigma. One factor was the quality and quantity of contact that autistic people have with others. Another factor was cultural differences, such as specific beliefs about autism. Sex and gender were important, as were other differences such as education and age. Last, whether an autistic person had shared their diagnosis affected stigma. Autism stigma had a negative impact on well-being. This included poor mental and physical health, as well as reduced social connections. Autism stigma also led to increased “camouflaging” of autistic traits. Family members also experienced stigma, which can affect their own well-being. Reducing autism stigma is important. To reduce stigma people should create more “autism friendly” spaces. They should include more positive representations of autistic people in the media. They should also improve the autism education of the public and professionals. Last, they should support neurodiversity.

What do the authors recommend for future research on this topic?: We need to better understand the factors that lead to autism stigma. We also need more effective ways to reduce stigma for autistic people and their families. Including the autistic community in this research process is very important.

How will this review help autistic adults now and in the future?: The review shows how stigma affects the autistic community. Autistic adults may find that the model helps them understand their own experiences of stigma. We hope the review will help develop more research into how to reduce autism stigma. Reducing autism stigma will improve the lives of autistic adults.

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Conflict of interest statement

No competing financial interests exist.

Figures

FIG. 1.
FIG. 1.
Theoretical model of causes and impact of autism stigma. Red circles indicate stigma, with Enacted stigma represented by the convergence of public and professional understanding of autism and expressed autistic traits (observed variables). Felt stigma and Affiliate stigma are experienced through Enacted stigma (black arrows). Purple rectangles indicate factors that have a moderating effect on the observed variables. Blue circles indicate the impact of stigma, including Well-being, measured by three observed variables, and camouflaging. Black arrows indicate the direct effects between Enacted stigma and Well-being and Camouflaging, as well as the indirect effects through the effects of Affiliate and Felt stigma. The curved black double- headed arrow illustrates covariance between public and professional understanding of autistic traits and expressed autistic traits, and between Well-being and Camouflaging. The bullet points above the dashed lines indicate interventions that may reduce stigma.
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