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切入点:通过自闭症患者的叙述理解特殊利益群体。

Access Points: Understanding Special Interests Through Autistic Narratives.

作者信息

Long Rebecca-Eli M

机构信息

Department of Anthropology, Purdue University, West Lafayette, Indiana, USA.

出版信息

Autism Adulthood. 2025 Feb 5;7(1):100-111. doi: 10.1089/aut.2023.0157. eCollection 2025 Feb.

DOI:10.1089/aut.2023.0157
PMID:40151658
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11937755/
Abstract

BACKGROUND

Although autistic people have shared how important their interests can be, sometimes using the phrase "special interests," autistic interests are commonly pathologized. Research has begun to recognize the benefits of special interests for autistic people. These benefits are often investigated primarily in childhood and in relation to neuronormative aims. In addition, existing research leaves the definition of "special interests" unquestioned. This study adds to the literature by examining not only what autistic adults mean by "special interests," but how they explain why these interests matter.

METHODS

The researcher interviewed 15 adult autistic advocates in the United States about their "special interests" to understand what this term meant to them based on their own life experiences. Through critical qualitative analysis of interview transcripts, including iterative inductive-deductive coding, hierarchical code organization, and positional mapping, the researcher looked for similarities and differences in how participants conceptualized special interests.

RESULTS

Participants used three different narrative strategies to describe special interests and their importance: explaining the amount of time spent on the interest, discussing how they experience the interest, and comparing special interests with other types of interests. Autistic people said that their interests mattered to them personally, as well as helped them communicate and connect with others. Participants also shared that it was important for non-autistic people to know about why special interests matter to autistic people and create a more accepting society.

CONCLUSIONS

The concept of "special interests" meant different things to the autistic people in this study. Even so, participants saw special interests as generally important and an aspect of their lives that should be societally supported. The narratives of special interests collected in this project challenge stereotypes of autistic people as disconnected and asocial. Instead, this study demonstrated how special interests take on increased individual and societal importance for autistic people.

摘要

背景

尽管自闭症患者已经分享了他们的兴趣是多么重要,有时会使用“特殊兴趣”这个短语,但自闭症患者的兴趣通常被病理化。研究已经开始认识到特殊兴趣对自闭症患者的益处。这些益处通常主要在儿童时期进行研究,并且与神经规范目标相关。此外,现有研究对“特殊兴趣”的定义未加质疑。本研究不仅考察了自闭症成年人所说的“特殊兴趣”是什么意思,还考察了他们如何解释这些兴趣为何重要,从而为该文献增添了内容。

方法

研究者采访了15位美国成年自闭症倡导者,询问他们的“特殊兴趣”,以便根据他们自己的生活经历了解这个术语对他们意味着什么。通过对访谈记录进行批判性定性分析,包括迭代归纳 - 演绎编码、分层代码组织和位置映射,研究者寻找参与者在如何概念化特殊兴趣方面的异同。

结果

参与者使用了三种不同的叙事策略来描述特殊兴趣及其重要性:解释花在兴趣上的时间量、讨论他们对兴趣的体验方式,以及将特殊兴趣与其他类型的兴趣进行比较。自闭症患者表示,他们的兴趣对他们个人很重要,同时也帮助他们与他人交流和建立联系。参与者还分享说,让非自闭症患者了解特殊兴趣对自闭症患者为何重要,并创造一个更包容的社会很重要。

结论

在本研究中,“特殊兴趣”的概念对自闭症患者来说有不同的含义。即便如此,参与者认为特殊兴趣总体上很重要,是他们生活中应该得到社会支持的一个方面。本项目收集的特殊兴趣叙事挑战了将自闭症患者视为脱节和不爱社交的刻板印象。相反,这项研究表明了特殊兴趣对自闭症患者如何具有越来越大的个人和社会重要性。

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本文引用的文献

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"In a State of Flow": A Qualitative Examination of Autistic Adults' Phenomenological Experiences of Task Immersion.“心流状态”:对自闭症成年人任务沉浸现象学体验的质性研究
Autism Adulthood. 2024 Sep 16;6(3):362-373. doi: 10.1089/aut.2023.0032. eCollection 2024 Sep.
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Autistic Adults' Experiences of Camouflaging and Its Perceived Impact on Mental Health.自闭症成年人的伪装经历及其对心理健康的感知影响。
Autism Adulthood. 2021 Dec 1;3(4):320-329. doi: 10.1089/aut.2020.0071. Epub 2021 Dec 7.
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Avoiding Ableist Language: Suggestions for Autism Researchers.避免使用歧视性语言:给自闭症研究者的建议。
Autism Adulthood. 2021 Mar 1;3(1):18-29. doi: 10.1089/aut.2020.0014. Epub 2021 Mar 18.
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'It's being a part of a grand tradition, a grand counter-culture which involves communities': A qualitative investigation of autistic community connectedness.“这是参与一个宏大的传统、一个宏大的反文化的一部分,其中包括社区”:对自闭症社区联系的定性研究。
Autism. 2022 Nov;26(8):2151-2164. doi: 10.1177/13623613221080248. Epub 2022 Mar 23.
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Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production.学者、活动家还是倡导者?愤怒、纠缠与兴起:对自闭症知识生成的批判性反思
Front Psychol. 2021 Sep 28;12:727542. doi: 10.3389/fpsyg.2021.727542. eCollection 2021.
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Personal Identity After an Autism Diagnosis: Relationships With Self-Esteem, Mental Wellbeing, and Diagnostic Timing.自闭症诊断后的个人身份认同:与自尊、心理健康及诊断时机的关系。
Front Psychol. 2021 Jul 30;12:699335. doi: 10.3389/fpsyg.2021.699335. eCollection 2021.
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"No Way Out Except From External Intervention": First-Hand Accounts of Autistic Inertia.“除了外部干预别无出路”:自闭症惯性的第一手描述
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