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一种获取自闭症青年第一人称视角的新方法。

: A novel method to access first-person perspective of autistic youth.

机构信息

McGill University, Canada.

The University of British Columbia, Canada.

出版信息

Autism. 2022 Jul;26(5):1123-1136. doi: 10.1177/13623613211042128. Epub 2021 Sep 4.

Abstract

The perspective of autistic individuals is often left uncaptured, and as a result they are often excluded from making decisions that impact them. Conventional communication can be challenging for many autistic individuals, especially those who are minimally verbal or who have an associated intellectual disability. Currently, a lack of appropriate methods to capture voices across the spectrum is a barrier. In the present study, we developed the protocol using universal design principles to capture the perspectives and experiences of autistic youth with a range of language or intellectual abilities. This protocol was then used with 33 autistic youth aged 11 to 18 years. A scoring rubric was developed to capture the unconventional communication used by the participants and the mitigation strategies used by interviewers to facilitate the interview. Many components of the protocol were found to effectively facilitate communication between the participant and interviewer, including the use of picture cards to support verbal questions/prompts, the fact that participants could respond with their preferred communication methods (writing, texting, pointing), and the fact that interviews were applied flexibly to adapt to each participant. Unconventional communication and mitigation strategies were mostly observed in interviews with minimally verbal individuals, but a fine-grained analysis showed participants were still communicating something through this unconventional communication. Our protocol could help promote the inclusion of more autistic individuals in research and showed that unconventional modes of communication like echolalia provide an understanding that participants' are invested in conversations and certain topics are more meaningful than others.

摘要

自闭症个体的观点往往未被捕捉到,因此他们常常被排除在影响他们的决策之外。对于许多自闭症个体来说,传统的沟通方式具有挑战性,尤其是那些语言能力较弱或伴有智力障碍的个体。目前,缺乏捕捉谱系内各种声音的适当方法是一个障碍。在本研究中,我们使用通用设计原则制定了方案,以捕捉具有不同语言或智力能力的自闭症青少年的观点和经验。然后,该方案用于 33 名 11 至 18 岁的自闭症青少年。制定了评分标准来捕捉参与者使用的非传统沟通方式以及访谈者使用的缓解策略,以促进访谈。该方案的许多部分被发现能够有效地促进参与者和访谈者之间的沟通,包括使用图片卡来支持口头问题/提示、参与者可以用他们喜欢的沟通方式(书写、发短信、指点)来回答,以及访谈可以灵活应用以适应每个参与者。在与语言能力较弱的个体的访谈中观察到了非传统的沟通方式和缓解策略,但精细的分析表明,参与者仍然通过这种非传统的沟通方式传达了一些信息。我们的方案可以帮助促进更多自闭症个体参与研究,并表明像回声语言这样的非传统沟通模式提供了一种理解,即参与者参与对话,某些话题比其他话题更有意义。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5bba/9340132/bf9d6c54ebe9/10.1177_13623613211042128-fig1.jpg

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