• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

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.

DOI:10.1177/13623613211042128
PMID:34482746
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9340132/
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
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5bba/9340132/bf9d6c54ebe9/10.1177_13623613211042128-fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5bba/9340132/bf9d6c54ebe9/10.1177_13623613211042128-fig1.jpg

相似文献

1
: A novel method to access first-person perspective of autistic youth.一种获取自闭症青年第一人称视角的新方法。
Autism. 2022 Jul;26(5):1123-1136. doi: 10.1177/13623613211042128. Epub 2021 Sep 4.
2
Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth.自闭症之声:关于自闭症青少年的需求、挑战及未来希望的观点
Autism. 2023 May;27(4):1142-1156. doi: 10.1177/13623613221132108. Epub 2022 Nov 3.
3
In their own words: The impact of subtle language and communication difficulties as described by autistic girls and boys without intellectual disability.他们自己的话:非智障自闭症男孩和女孩描述的微妙语言和沟通困难的影响。
Autism. 2022 Feb;26(2):332-345. doi: 10.1177/13623613211002047. Epub 2021 Jul 22.
4
What do parents of nonverbal and minimally verbal autistic children think about genomic autism research?非言语和极轻度言语自闭症儿童的家长如何看待基因组自闭症研究?
Autism. 2024 Jul;28(7):1838-1846. doi: 10.1177/13623613231213431. Epub 2024 Mar 9.
5
Benefits and Risks: A Systematic Review of Information and Communication Technology Use by Autistic People.益处与风险:对自闭症患者使用信息通信技术的系统评价
Autism Adulthood. 2021 Mar 1;3(1):72-84. doi: 10.1089/aut.2020.0048. Epub 2021 Mar 18.
6
Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities.假设自闭症青年的能力:捕捉残疾儿童和青年第一人称视角的方法综述。
Autism. 2019 Nov;23(8):1882-1896. doi: 10.1177/1362361319831487. Epub 2019 Mar 27.
7
Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management.极少说话或不说话的自闭症个体的焦虑:一项关于家长经历和焦虑管理的定性研究
Autism. 2021 Feb;25(2):429-439. doi: 10.1177/1362361320962366. Epub 2020 Oct 1.
8
Affective Contact in Autism: A Phenomenological Study of the Emotional Experiences of Autistic Adults.自闭症患者的情感联系:自闭症成人情感体验的现象学研究。
Am J Occup Ther. 2024 Jul 1;78(4). doi: 10.5014/ajot.2024.050502.
9
Eliciting Language Samples for Analysis (ELSA): A New Protocol for Assessing Expressive Language and Communication in Autism.用于分析的语言样本采集(ELSA):一种评估自闭症患者表达性语言和交流能力的新方案。
Autism Res. 2021 Jan;14(1):112-126. doi: 10.1002/aur.2380. Epub 2020 Sep 9.
10
Exploring communicative competence in autistic children who are minimally verbal: The Low Verbal Investigatory Survey for Autism (LVIS).探索低语言自闭症儿童的交际能力:自闭症低语言调查(LVIS)。
Autism. 2023 Jul;27(5):1391-1406. doi: 10.1177/13623613221136657. Epub 2022 Nov 14.

引用本文的文献

1
"There is just too much going on there": Nonverbal communication experiences of autistic adults.“那里发生的事情太多了”:自闭症成年人的非言语交流体验。
PLoS One. 2025 Jul 11;20(7):e0325465. doi: 10.1371/journal.pone.0325465. eCollection 2025.
2
Exploring the Social Validity and Diffusion Potential of Common Naturalistic Developmental Behavioral Intervention Strategies Implemented in Community Preschools.探索在社区幼儿园实施的常见自然主义发展行为干预策略的社会效度和传播潜力。
Behav Sci (Basel). 2025 Mar 13;15(3):357. doi: 10.3390/bs15030357.
3
An 'explosion in the mouth': The oral health experiences of autistic children.

本文引用的文献

1
Including Speaking and Nonspeaking Autistic Voice in Research.在研究中纳入有语言能力和无语言能力的自闭症患者声音。
Autism Adulthood. 2020 Jun 1;2(2):128-131. doi: 10.1089/aut.2019.0002. Epub 2020 Jun 10.
2
The Development and Feasibility Study of a Multimodal 'Talking Wall' to Facilitate the Voice of Young People with Autism and Complex Needs: A Case Study in a Specialist Residential School.多模态“有声墙”的开发与可行性研究:以一所特殊住宿学校中的自闭症和多重需求青少年的声音为案例
J Autism Dev Disord. 2020 Dec;50(12):4267-4279. doi: 10.1007/s10803-020-04476-6.
3
Mapping the Autistic Advantage from the Accounts of Adults Diagnosed with Autism: A Qualitative Study.
口腔中的“爆炸”:自闭症儿童的口腔健康经历
Autism. 2025 Mar;29(3):627-641. doi: 10.1177/13623613241288628. Epub 2024 Nov 8.
4
Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities.能够做自己:从智障成年自闭症患者的角度理解自主性和自主性支持。
Autism. 2024 Dec;28(12):3092-3104. doi: 10.1177/13623613241254432. Epub 2024 May 17.
5
The Social Validity of Behavioral Interventions: Seeking Input from Autistic Adults.行为干预的社会效度:征求成年自闭症患者的意见
J Autism Dev Disord. 2025 Apr;55(4):1172-1186. doi: 10.1007/s10803-024-06297-3. Epub 2024 Mar 12.
6
Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study.阐明自闭症青年对其医疗保健体验的看法:一项定性研究。
J Dev Behav Pediatr. 2024 Jan 1;45(1):e39-e45. doi: 10.1097/DBP.0000000000001228. Epub 2023 Oct 23.
7
Do Children Think it is Important to Predict Learning and Behaviour Problems, and Do They Think Genetic Screening Has a Role to Play in This?儿童是否认为预测学习和行为问题很重要,他们是否认为基因筛查在此方面发挥作用?
J Autism Dev Disord. 2024 Jun;54(6):2368-2385. doi: 10.1007/s10803-023-05966-z. Epub 2023 Apr 6.
8
Facilitators and Barriers to Physical Activity Involvement as Described by Autistic Youth with Mild Intellectual Disability.轻度智力障碍自闭症青少年所描述的身体活动参与的促进因素和障碍
Adv Neurodev Disord. 2022 Dec 12:1-13. doi: 10.1007/s41252-022-00310-5.
9
Social Validity of Pivotal Response Treatment for Young Autistic Children: Perspectives of Autistic Adults.针对幼儿自闭症的关键反应治疗的社会效度:成年自闭症患者的观点
J Autism Dev Disord. 2024 Feb;54(2):423-441. doi: 10.1007/s10803-022-05808-4. Epub 2022 Nov 24.
10
Barriers to access and utilization of healthcare services for minority-language speakers with neurodevelopmental disorders: A scoping review.神经发育障碍的少数族裔语言使用者获取和利用医疗服务的障碍:一项范围综述。
Front Psychiatry. 2022 Aug 25;13:915999. doi: 10.3389/fpsyt.2022.915999. eCollection 2022.
从成年自闭症患者的叙述中探寻自闭症优势:一项定性研究
Autism Adulthood. 2019 Jun 1;1(2):124-133. doi: 10.1089/aut.2018.0035. Epub 2019 Apr 13.
4
Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities.假设自闭症青年的能力:捕捉残疾儿童和青年第一人称视角的方法综述。
Autism. 2019 Nov;23(8):1882-1896. doi: 10.1177/1362361319831487. Epub 2019 Mar 27.
5
'I definitely feel more in control of my life': The perspectives of young autistic people and their parents on emerging adulthood.“我确实感觉对自己的生活更有掌控感了”:青年自闭症患者及其父母对成年早期的看法。
Autism. 2019 Oct;23(7):1765-1781. doi: 10.1177/1362361319830029. Epub 2019 Feb 28.
6
What interests young autistic children? An exploratory study of object exploration and repetitive behavior.年轻自闭症儿童的兴趣是什么?一项关于物体探索和重复行为的探索性研究。
PLoS One. 2018 Dec 31;13(12):e0209251. doi: 10.1371/journal.pone.0209251. eCollection 2018.
7
Hearing me hearing you: Reciprocal effects between child and parent language in autism and typical development.听到我听到你:自闭症和典型发育中儿童和父母语言的相互影响。
Cognition. 2019 Feb;183:1-18. doi: 10.1016/j.cognition.2018.10.022. Epub 2018 Nov 2.
8
Making the future together: Shaping autism research through meaningful participation.共同创造未来:通过有意义的参与塑造自闭症研究。
Autism. 2019 May;23(4):943-953. doi: 10.1177/1362361318786721. Epub 2018 Aug 10.
9
Parents' and young adults' perspectives on transition outcomes for young adults with autism.家长和青年对自闭症青年过渡结果的看法。
Autism. 2018 Jan;22(1):29-39. doi: 10.1177/1362361317699585. Epub 2017 Oct 11.
10
Tracing the temporal stability of autism spectrum diagnosis and severity as measured by the Autism Diagnostic Observation Schedule: A systematic review and meta-analysis.通过《孤独症诊断观察量表》衡量孤独症谱系障碍诊断及严重程度的时间稳定性:一项系统评价与荟萃分析
PLoS One. 2017 Sep 21;12(9):e0183160. doi: 10.1371/journal.pone.0183160. eCollection 2017.