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Autism Adulthood. 2023 Sep 1;5(3):263-274. doi: 10.1089/aut.2022.0039. Epub 2023 Aug 30.
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Autism Adulthood. 2022 Jun 1;4(2):104-109. doi: 10.1089/aut.2021.0050. Epub 2022 Jun 9.
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"I Knew She'd Get It, and Get Me": Participants' Perspectives of a Participatory Autism Research Project.“我就知道她会成功,也会帮到我”:参与者对一个参与式自闭症研究项目的看法
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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
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Autism Adulthood. 2020 Jun 1;2(2):132-143. doi: 10.1089/aut.2019.0079. Epub 2020 Jun 10.
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通过以自闭症患者的声音为中心来消除自闭症研究中的污名:定性研究的联合访谈指南

Combating stigma in autism research through centering autistic voices: a co-interview guide for qualitative research.

作者信息

Kaplan-Kahn Elizabeth A, Caplan Reid

机构信息

Center for Autism Research, Children's Hospital of Philadelphia, Philadelphia, PA, United States.

Accessible Academia, Washington, DC, United States.

出版信息

Front Psychiatry. 2023 Aug 15;14:1248247. doi: 10.3389/fpsyt.2023.1248247. eCollection 2023.

DOI:10.3389/fpsyt.2023.1248247
PMID:37654987
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10466038/
Abstract

As autism has gained increased attention in the past few decades, autistic advocates have adopted the phrase "Nothing about us without us," illustrating the idea that autistic people should be centered in all conversations regarding autism. However, in a large portion of autism research, autistic people are still not meaningfully engaged throughout the research process, leading to continued stigma in research through biased methods. Thus, stigma about autism influences not only the content of autism research, but the ways in which neurotypical people conduct research alongside (or without) autistic people, ultimately resulting in less valid conclusions or research that actively harms the autistic community. One way to address this stigma is through involving autistic individuals as equal partners in the research process, such as by including autistic co-interviewers in qualitative studies of autistic people. In this perspectives piece, we will highlight the benefits of participatory research practices within qualitative research. Furthermore, we will outline methods for conducting co-interviews with autistic research partners and share insights from our experiences implementing this practice. We hope this piece provides researchers the practical resources and inspiration to continue working toward decreasing the stigma surrounding autism in research spaces.

摘要

在过去几十年里,随着自闭症越来越受到关注,自闭症倡导者采用了“没有我们的参与,就没有关于我们的一切”这句话,阐明了自闭症患者应成为所有关于自闭症讨论的核心这一观点。然而,在很大一部分自闭症研究中,自闭症患者在整个研究过程中仍未得到有意义的参与,导致通过有偏见的方法在研究中持续存在污名化现象。因此,对自闭症的污名化不仅影响自闭症研究的内容,还影响神经典型人群与自闭症患者一起(或不与自闭症患者一起)开展研究的方式,最终导致得出的结论有效性降低,或者研究对自闭症群体造成实际伤害。解决这种污名化的一种方法是让自闭症患者作为平等伙伴参与研究过程,比如在对自闭症患者的定性研究中纳入自闭症共同访谈者。在这篇观点文章中,我们将强调定性研究中参与式研究实践的益处。此外,我们将概述与自闭症研究伙伴进行共同访谈的方法,并分享我们实施这种做法的经验见解。我们希望这篇文章能为研究人员提供实用资源和灵感,促使他们继续努力减少研究领域中围绕自闭症的污名化现象。