"Autism is me": an investigation of how autistic individuals make sense of autism and stigma
"Autism is me": an investigation of how autistic individuals make sense of autism and stigma
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DOI：
10.1080/09687599.2020.1822782
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发表时间：
2020-10-02
影响因子：
2.4
通讯作者：
Frost, David M.
中科院分区：
文献类型：
--
作者：
Botha, Monique;Dibb, Bridget;Frost, David M.
对自闭症的理解有很多不同的视角。这些观点可能每个人都传达了不同程度的自闭症患者的耻辱。这项定性研究旨在了解自闭症患者如何理解他们自己的自闭症，并体验与自闭症相关的耻辱。这项研究使用了关键的扎根理论工具。参与者(N=20)讨论了自闭症是他们身份的核心，是他们是谁的不可或缺的一部分。虽然参与者认为自闭症是价值中立的，但他们表达了社会如何赋予自闭症和自闭症负面意义。研究结果还表明，对自闭症的不同理解会带来不同程度的耻辱。参与者表达了对耻辱的持续暴露，并以不同的方式管理这种耻辱。这些方法包括重建对自闭症的更积极的理解，重新使用语言，以及战略性地使用隐瞒和披露。这些发现的意义将在文章中进一步讨论。有趣的是，自闭症研究参与者认为他们的自闭症是中性的-类似于任何其他特征，如种族或发色。参与者认为，社会认为他们的自闭症是一种不好的特征。参与者在如何看待自己与他们认为社会如何看待他们之间的紧张关系中苦苦挣扎。参与者在透露自己患有自闭症和隐瞒自闭症之间左右为难，但无论哪种方式，他们都觉得自己受到了负面对待。参与者使用“自闭症”这个词来恢复自闭症的污名，并重新构建人们对自闭症的理解，使之不那么消极。
There are many different perspectives for understanding autism. These perspectives may each convey different levels of stigma for autistic individuals. This qualitative study aimed to understand how autistic individuals make sense of their own autism and experience the stigma attached to autism. The study used critical grounded theory tools. Participants (N = 20) discussed autism as central to their identity, and integral to who they are. While participants thought of autism as value neutral, they expressed how society confers negative meanings onto autism, and thus, them. The findings also indicate that different understandings of autism confer different levels of stigma. Participants expressed constant exposure to stigma and managed this stigma in different ways. Such methods included reframing to more positive understandings of autism, the reclamation of language, and using concealment and disclosure strategically. The implications of these findings are discussed further in the article.Points of interest Autistic research participants consider their autism to be value neutral - akin to any other feature like race or hair colour. Participants feel that society sees their autism as being a bad trait to have. Participants struggled with the tension in how they see themselves, versus how they believe society sees them. Participants are caught between disclosing that they are autistic and concealing it, but feel they are treated negatively either way. Participants use the word "autistic" to reclaim autism from stigma, and to reframe peoples understandings of autism to be less negative.