以自闭症患者的内心体验为中心:自闭症特质自我评估的发展。

Allison B Ratto, Julia Bascom, Sharon daVanport, John F Strang, Laura G Anthony, Alyssa Verbalis, Cara Pugliese, Nicole Nadwodny, Lydia X Z Brown, Mallory Cruz, Becca Lory Hector, Steven K Kapp, Morénike Giwa Onaiwu, Dora M Raymaker, John Elder Robison, Catriona Stewart, Ren Stone, Emma Whetsell, Kevin Pelphrey, Lauren Kenworthy
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引用次数: 0

摘要

目前用于识别自闭症的工具因缺乏特异性和敏感性而受到批评,尤其是对于年龄较大、语言能力较强或有明显代偿技能、且非顺性别男孩的自闭症患者。这可能反映了以下几点:自闭症研究历来侧重于白人(顺性别)男性、中上层阶级儿童;对自闭症患者内心和生活经历的兴趣有限;自闭症的缺陷模型占主导地位。据我们所知,自闭症患者描述的自闭症特征的临床自我报告测量方法是首次尝试。我们认为这是方法论上的一个进步,因为之前自闭症特质/诊断测量方法的开发工作都优先考虑非自闭症临床医生和科学家的观点。该量表是在两名自闭症研究人员的领导下开发的,通过利用自闭症患者对自闭症的描述来生成项目,旨在使用基于力量的易懂语言来涵盖自闭症患者的各种经历。该团队利用自闭症专家小组的反复反馈来完善和改进这一名为 "自闭症特质自我评估"(SAAT)的量表。它面向 16 岁或以上的人群,采用的格式旨在提高自闭症受访者的可及性和可接受性。未来的工作将报告 SAAT 的初步心理测量结果,其长期目标是促进我们对自闭症患者内心体验的了解,并加强对自闭症的临床和科学评估。
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Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits.

Current tools for identifying autism are critiqued for their lack of specificity and sensitivity, especially in autistic people who are older, have higher verbal ability or significant compensatory skills, and are not cisgender boys. This may reflect the following: the historical focus of autism research on White (cisgender) male, upper and middle class children; limited interest in the inner, lived experience of autism; and the predominance of a deficit-based model of autism. We report here on the first attempt of which we are aware to develop a clinical self-report measure of autistic traits as described by autistic people. We believe this is an advance in methodology because prior work in the development of autistic trait/diagnostic measures has prioritized the perspectives of nonautistic clinicians and scientists. The measure was developed under the leadership of two autistic researchers and constructed by leveraging descriptions of autism by autistic people to generate items designed to encompass the range of the autistic experience, using strength-based, accessible language. The team utilized iterative feedback from a panel of autistic experts to refine and enhance the measure, called the Self Assessment of Autistic Traits (SAAT). It is intended for people 16 years or older and uses a format that is designed to increase its accessibility and acceptability for autistic respondents. Future work will report on the preliminary psychometrics of the SAAT, with a long-term goal of advancing our understanding of the inner autistic experience and enhancing the clinical and scientific assessment of autism.

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