用正确的方法测量错误的东西?是时候重新思考自闭症研究工具了。

Sandra C Jones
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引用次数: 0

摘要

人们对自闭症的认识和理解在不断加深,有时是循序渐进,有时是模式转变。这在很大程度上是由自闭症倡导者推动的,他们作为自身生活经历的专家,其声音日益得到认可。自闭症患者作为参与者、顾问和(共同)研究者,越来越多地参与到自闭症研究中来,这给自闭症研究的质量和相关性带来了变化。我们看到更多由自闭症研究人员进行的研究,更多关于对自闭症患者重要的问题的研究,以及更多利用能引起自闭症患者共鸣的方法进行的研究。然而,我们仍然依赖于技术上 "有效 "和 "可靠 "的测量方法,而不是相关的测量方法。只要存在这种情况,我们就会继续看到以不能反映自闭症患者经历的方式 "解释自闭症 "的研究发表。自闭症研究仍在逐步改变,是时候进行范式转变了。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools.

Awareness and understanding of autism are increasing, sometimes in small incremental steps and sometimes through paradigm shifts. Much of this is driven by autistic advocates, whose voices are increasingly recognized as experts in their own lived experiences. The growing presence of autistic people in autism research-as participants, advisors, and (co)researchers-has brought about changes in the quality and relevance of autism research. We are seeing more studies by autistic autism researchers, more studies on issues of importance to autistic people, and more studies utilizing methodologies that resonate with autistic people. However, there remains a reliance on measures that are technically "valid" and "reliable" rather than relevant. As long as this is the case, we will continue to see studies published that "explain autism" in ways that do not reflect autistic experiences. Autism research is still making incremental changes and it is time for a paradigm shift.

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