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自闭症成年人在线话语中个体与集体身份的协商

Negotiation of Individual and Collective Identities in the Online Discourse of Autistic Adults.

作者信息

Kim So Yoon, Bottema-Beutel Kristen

机构信息

Department of Teacher Education, Special Education, and Curriculum and Instruction, Lynch School of Education, Boston College, Chestnut Hill, Massachusetts.

出版信息

Autism Adulthood. 2019 Mar 1;1(1):69-78. doi: 10.1089/aut.2018.0029. Epub 2019 Mar 11.

Abstract

BACKGROUND

Previous studies have shown an increasing preference for online communication within the autistic advocacy community. Yet, little is known about how online communication facilitates the formation of autistic identity. This qualitative study examined online autobiographical narratives about repetitive and restricted behaviors-specifically "stimming"-produced by autistic adults. The primary goal of this study was to investigate how the production of, and online interactions around, these narratives functioned as collaborative resources for empowered autistic identities.

METHODS

Nine blog posts were located that contained autobiographical narratives related to stimming and were analyzed using discourse analysis.

RESULTS

Analysis revealed that individual and collective identities were negotiated within narratives through: (1) situating the self in relation to other story characters and the reader in varying ways and (2) connecting the autistic community and solidifying collective ideologically aligned voices.

CONCLUSIONS

Online blog spaces facilitated the emergence and construction of empowered individual and collective identities for autistic individuals. Future research should continue to focus on how autistic individuals form relationships, create advocacy communities, and cultivate empowered identities within online spaces.

LAY SUMMARY

More autistic individuals are using the internet to communicate, and research has shown that online communication can benefit autistic individuals in various ways. However, there is a lack of understanding of how online communication is related to autistic identity. We examined how autistic bloggers' stories about their stimming experiences contributed to individual and collective autistic identities. Stimming refers to repetitive body movements, movements of objects, and other repetitive and restricted behavior and is considered one of two core features of an autism diagnosis. Although some stakeholders such as educators or parents have tried to get rid of these repetitive movements because they believe that stimming is not an appropriate behavior, autistic and other neurodiversity advocates assert that stimming is beneficial for autistic individuals and is important for developing an autistic identity. We examined nine blog posts written by autistic bloggers using a method referred to as discourse analysis. In each blog post that we analyzed, the author shares their experiences about stimming. Discourse analysis is a method used to explore how people use language to build meaning, including the formation of social identities. Therefore, particular attention was paid to the bloggers told the narrative (i.e., specific word choices to describe characters within the narrative and verb tense). We found that by sharing stories about their stimming experience in the context of blog posts, autistic individuals developed empowered individual and collective autistic identities and challenged dominant and neurotypical social norms. Also, within online space, autistic individuals formed social relationships and connections that contributed to a collective identity. More research on how autistic individuals develop supportive relationships and form advocacy communities within online spaces is needed to promote emotional well-being and overall quality of life in this population.

摘要

背景

先前的研究表明,自闭症倡导群体对在线交流的偏好日益增加。然而,对于在线交流如何促进自闭症身份认同的形成,我们知之甚少。这项定性研究考察了自闭症成年人撰写的关于重复刻板行为(特别是“自我刺激行为”)的在线自传体叙事。本研究的主要目的是调查这些叙事的创作以及围绕它们的在线互动如何作为增强自闭症身份认同的协作资源发挥作用。

方法

找到九篇包含与自我刺激行为相关的自传体叙事的博客文章,并使用话语分析进行分析。

结果

分析表明,个体身份和集体身份在叙事中通过以下方式进行协商:(1)以不同方式将自我与其他故事角色及读者联系起来;(2)将自闭症群体联系起来,并巩固在意识形态上保持一致的集体声音。

结论

在线博客空间促进了自闭症个体增强型个体身份和集体身份的出现与构建。未来的研究应继续关注自闭症个体如何在网络空间中建立关系、创建倡导群体以及培养增强型身份认同。

通俗概述

越来越多的自闭症个体使用互联网进行交流,研究表明在线交流可以在各种方面使自闭症个体受益。然而,人们对于在线交流与自闭症身份认同之间的关系缺乏了解。我们研究了自闭症博主关于他们自我刺激行为经历的故事如何促成个体和集体的自闭症身份认同。自我刺激行为是指重复性的身体动作、物体移动以及其他重复刻板行为,被认为是自闭症诊断的两个核心特征之一。尽管一些利益相关者,如教育工作者或家长,试图消除这些重复动作,因为他们认为自我刺激行为是不适当的行为,但自闭症及其他神经多样性倡导者坚称自我刺激行为对自闭症个体有益,并且对形成自闭症身份认同很重要。我们使用一种称为话语分析的方法研究了自闭症博主撰写的九篇博客文章。在我们分析的每篇博客文章中,作者分享了他们关于自我刺激行为的经历。话语分析是一种用于探索人们如何使用语言构建意义的方法,包括社会身份的形成。因此,我们特别关注博主讲述故事的方式(即描述叙事中角色的特定词汇选择和动词时态)。我们发现,通过在博客文章的背景下分享他们自我刺激行为的经历,自闭症个体形成了增强型的个体和集体自闭症身份认同,并挑战了主流和神经典型的社会规范。此外,在网络空间中,自闭症个体形成了有助于集体身份认同的社会关系和联系。需要更多关于自闭症个体如何在网络空间中发展支持性人际关系并形成倡导群体的研究,以促进这一群体的心理健康和整体生活质量。

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Constructing an autistic identity: AS voices online.构建自闭症身份认同:来自自闭症群体的网络声音。
Ment Retard. 2006 Oct;44(5):315-21. doi: 10.1352/0047-6765(2006)44[315:CAAIAV]2.0.CO;2.
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