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Self-Stigma of Families of Persons with Autism Spectrum Disorder: a Scoping Review

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Abstract

This review aimed to understand the dimensions of self-stigma that are unique to the families of persons with autism spectrum disorder (ASD) and the conditions in which self-stigma in families of persons with ASD arises. We reviewed the self-stigma dimensions in families of persons with ASD. Seventeen studies met our inclusion criteria and provided qualitative information on the dimensions of self-stigma. The identified dimensions were social misunderstanding, negative prejudice, social rejection, isolation, emotional reactions, and stigma management. The dimension of social misunderstanding was unique to families of persons with ASD. This review adds insights into self-stigma theory, and, by clarifying the dimensions of self-stigma, suggests areas for future self-stigma research among families of persons with ASD.

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Notes

  1. The final search strategy for Web of Science and PsycINFO was (Autism Spectrum Disorder* OR ASD OR Autistic Disorder* OR Asperger* syndrome OR Asperger* Disorder* OR Asperger* Disease* OR Child Development* Disorder* OR Pervasive Development* Disorder*) AND Stigma* OR Courtesy Stigma* OR Associative stigma* OR Affiliate stigma* OR Self Stigma* OR Perceived Stigma*) AND (Famil* OR Parent* OR Mother* OR Father* OR Spous* OR Marri* OR Partner* OR Sibling* OR Child*). In Ichushi Web References, we used the same terms in Japanese. In PubMed, we used the same terms, but we used MeSH terms as follows: “autism spectrum disorder”[MeSH Terms], “autistic disorder”[MeSH Terms], “asperger syndrome”[MeSH Terms], Stigma[MeSH Terms], Family[MeSH Terms], Parents[MeSH Terms], Mothers[MeSH Terms], Fathers[MeSH Terms], Spouses[MeSH Terms], Siblings[MeSH Terms], Child[MeSH Terms].

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Acknowledgments

The authors are grateful to representatives of The Japan Science Society of Public Interest Incorporated Foundation.

Funding

This work was supported by the Sasakawa Scientific Research Grant from The Japan Science Society (grant number 2018-1015).

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Authors and Affiliations

  1. Department of Public Health Nursing, Faculty of Medicine, University of Tsukuba, 1-1-1 Tenno dai, Tsukuba City, Ibaraki, Japan

    Naoko Kumada Deguchi & Tomoko Omiya

  2. Laboratory of Health and Social Behavior, Tokyo Gakugei University, Koganei, Japan

    Takashi Asakura

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  1. Naoko Kumada Deguchi
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  2. Takashi Asakura
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Correspondence to Naoko Kumada Deguchi.

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Deguchi, N.K., Asakura, T. & Omiya, T. Self-Stigma of Families of Persons with Autism Spectrum Disorder: a Scoping Review. Rev J Autism Dev Disord 8, 373–388 (2021). https://doi.org/10.1007/s40489-020-00228-5

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