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“我们已经走了很长很长的路”:克服自闭症的耻辱感:英国犹太社区的阐释现象学分析。

'We've come a very, very, long way' Overcoming stigma of autism: An interpretative phenomenological analysis within the UK Jewish community.

机构信息

University of Oxford, UK.

University of Cambridge, UK.

出版信息

Autism. 2022 Nov;26(8):2066-2083. doi: 10.1177/13623613221075099. Epub 2022 Mar 22.

Abstract

Autistic people contend with high levels of stigma in a wide array of cultures worldwide. There is a scarcity of literature on stigma in relation to autism in faith communities, with some limited research on this issue in Christian, Muslim and Hindu populations. There is virtually no research focussing on this topic in Jewish communities and to our knowledge, none at all within UK Jewish contexts. In this study, we aimed to explore experiences of stigma towards autism and sought views on what steps have and can be taken to reduce such stigma. Using an interpretative phenomenological analysis approach, we conducted semi-structured interviews with 10 participants within the UK Jewish community, including parents, rabbis, SENDCos, teachers, and headmasters of autistic children in both mainstream and specialist autistic schools. Interviews were conducted over 2 months in 2020. During analysis, 5 superordinate (central) themes and 13 subordinate themes were abstracted from the data. Superordinate themes included 'Stigma not specific to the Jewish community'; 'Considerable strides made'; 'More a lack of knowledge or denial than stigma'; 'Fear of stigma is a real concern but not widely prevalent'; and 'Potent factors that reduce stigma in the Jewish community'. We recommend workshops for greater awareness and training for teachers and parents on autism and autistic children's experiences. We also recommend the formation of specialist autism schools in other communities and promotion of positive narratives concerning autistic people, as this successfully reduced stigma within the Jewish community.

摘要

自闭症患者在全球各种文化中都面临着高度的污名化。关于宗教社区中自闭症污名化的文献很少,只有一些关于基督教、穆斯林和印度教群体的有限研究。在犹太社区中几乎没有针对这个问题的研究,据我们所知,在英国犹太社区中也没有任何研究。在这项研究中,我们旨在探讨自闭症污名化的经验,并探讨可以采取哪些措施来减少这种污名化。我们采用解释性现象学分析方法,在英国犹太社区中对 10 名参与者进行了半结构化访谈,参与者包括自闭症儿童的家长、拉比、特殊教育协调员、教师和校长,他们的孩子在主流和专门的自闭症学校就读。访谈在 2020 年进行了 2 个月。在分析过程中,从数据中提取了 5 个上位(中心)主题和 13 个下位主题。上位主题包括“污名化并非犹太社区所特有”、“已经取得了相当大的进展”、“更多的是缺乏知识或否认,而不是污名化”、“对污名化的恐惧是一个真正的问题,但并不普遍”和“在犹太社区中减少污名化的有力因素”。我们建议为教师和家长举办更多关于自闭症和自闭症儿童经历的意识和培训研讨会。我们还建议在其他社区建立专门的自闭症学校,并宣传关于自闭症患者的积极叙述,因为这在犹太社区成功地减少了污名化。

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