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

Deguchi, Naoko Kumada; Asakura, Takashi; Omiya, Tomoko

doi:10.1007/s40489-020-00228-5

Cited by 12 publications

(10 citation statements)

References 51 publications

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“…Several reviews have found that parents/caregivers perceive and experience courtesy stigma by association with their autistic child, which can become internalised and develop into affiliate stigma (Deguchi et al, 2021;Liao et al, 2019;Papadopoulos et al, 2019;Salleh et al, 2020). A systematic review by Papadopoulos et al (2019) also found consistent evidence of the harmful effects of autism-related stigma on caregiver mental health.…”

Section: Stereotypesmentioning

confidence: 99%

A systematic review on autistic people's experiences of stigma and coping strategies

Han¹,

Scior²,

Avramides³

et al. 2021

Autism Research

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Autism can be understood as a concealable stigmatised identity. This is the first systematic review to synthesise the literature on autistic people's experiences of stigma and coping strategies. 2877 studies were screened and 27 were included in this review. The reviewed literature demonstrates that autistic individuals are acutely aware of being stereotyped, judged, and discriminated by others. Autistic people also show signs of internalising stigma, rendering them more vulnerable to low self-worth and poorer mental health. To manage the impact of stigma, the included studies suggest that autistic individuals may use these strategies: concealment and camouflaging, selective disclosure and self-advocacy, as well as positive reframing and reconstructing identity. However, the evidence is limited and mixed in terms of how helpful and effective these strategies are. Future studies should include autistic populations with a wider range of intellectual abilities and explore interventions that can support autistic people in managing stigma to supplement interventions that seek to reduce stigma towards autistic people. The power of language in perpetuating and challenging stigma also has important implications for research and practice, underscoring the need for researchers and practitioners to reflect carefully on the messages they are communicating about autism. Lay summaryThis review has found that autistic people often experience stigma, which refers to negative attitudes and treatment from others. Because of that, some autistic people also have negative beliefs about themselves, which may affect their self-worth and mental health.While research suggests that autistic people use a range of strategies to manage stigma, the evidence is limited and mixed in terms of how helpful these strategies are.

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Section: Stereotypesmentioning

confidence: 99%

A systematic review on autistic people's experiences of stigma and coping strategies

Han¹,

Scior²,

Avramides³

et al. 2021

Autism Research

View full text Add to dashboard Cite

show abstract

“…Much of the literature on autism stigma has revolved around the perspectives of the public, such as surveys of the general population (detailed above), and the perspectives of parents/caregivers of autistic children. Several reviews have found that parents/caregivers perceive and experience courtesy stigma by association with their autistic child, which can become internalised and develop into affiliate stigma (Deguchi et al, 2021;Liao et al, 2019;Mitter et al, 2019;Papadopoulos et al, 2019;Salleh et al, 2020). A systematic review by Papadopoulos et al (2019) also found consistent evidence of the harmful effects of autismrelated stigma on caregiver mental health.…”

Section: Stereotypesmentioning

confidence: 99%

“…The following databases were searched: PsycInfo, MEDLINE, Web of Science, Scopus, ERIC, and ProQuest Dissertations & Theses. A search string was developed based on previous systematic and scoping reviews on similar topics (Deguchi et al, 2021;Mazumder & Thompson-Hodgetts, 2019;Salleh et al, 2020). To achieve a comprehensive search strategy, using both free-text terms that increase sensitivity and Medical Subject Headings (MeSH) terms that increase precision is recommended (if available on the database).…”

Section: Search Strategymentioning

confidence: 99%

A systematic review on autistic people’s experiences of stigma and coping strategies

Han¹,

Scior²,

Avramides³

et al. 2021

Preprint

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Autism can be understood as a concealable stigmatised identity. This is the first systematic review to synthesise the literature on autistic people’s experiences of stigma and coping strategies. 2877 records were screened and 26 studies included in this review. The reviewed literature demonstrates that autistic individuals are acutely aware of being stereotyped, judged, and discriminated by others. Autistic people also show signs of internalising stigma, rendering them more vulnerable to low self-worth and poorer mental health. To manage the impact of stigma, the included studies suggest that autistic individuals may use these strategies: concealment and camouflaging, selective disclosure and self-advocacy, as well as positive reframing and reconstructing identity. However, the evidence is limited and mixed in terms of how helpful and effective these strategies are. Future studies should include autistic populations with a wider range of intellectual abilities and explore interventions that seek to support autistic people in managing stigma. The power of language in perpetuating and challenging stigma also has important implications for research and practice, underscoring the need for researchers and practitioners to reflect carefully on the messages they are communicating about autism.

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“…The characteristic difficulties of autism can present families with many challenges and stressors. These may affect all aspects of family life, education, work and social inclusion and can lead to experience of stigma and social isolation [5,6]. Families' experiences are subject to a range of variables that can variously act as mediators and moderators.…”

Section: Introductionmentioning

confidence: 99%

“There Isn’t Really Anything around Here…”: Autism, Education and the Experience of Families Living in Rural Coastal England

Preece

Lištiaková

2021

Education Sciences

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Autism affects over 2% of the school population in England. Education has proven to be an effective intervention strategy that improves the quality of life of children with autism and their families. However, governmental austerity policies have increased disadvantage in coastal areas of England with a detrimental impact on people with disabilities. This qualitative study explored the lives of families living with autism in rural coastal England. Mothers, fathers, grandparents and young people from 21 families living with autism in West Norfolk and Cornwall shared their experience through semi-structured interviews that were conducted in early 2019. Families identified positive and negative aspects of living in these areas, including barriers preventing access to and inclusion in education. Barriers were related to poor infrastructure, sparse specialised services (resulting in diagnostic delay and difficulties), limited autism awareness, lack of trained professionals, and the impact of austerity across health, social care and education. Families’ struggles are amplified by the intersectionality of (a) autism-specific needs, (b) physical distance and small-community life related to rurality and (c) the seasonal and peripheral nature of coastal life. Access to education for children with autism in rural coastal areas of England could be improved by acknowledging and addressing the intersecting factors intensifying their marginalisation.

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

Cited by 12 publications

References 51 publications

A systematic review on autistic people's experiences of stigma and coping strategies

A systematic review on autistic people's experiences of stigma and coping strategies

A systematic review on autistic people’s experiences of stigma and coping strategies

“There Isn’t Really Anything around Here…”: Autism, Education and the Experience of Families Living in Rural Coastal England

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