Bottema-Beutel Kristen, Kapp Steven K, Lester Jessica Nina, Sasson Noah J, Hand Brittany N
Lynch School of Education and Human Development, Boston College, Chestnut Hill, Massachusetts, USA.
Department of Psychology, University of Portsmouth, Portsmouth, United Kingdom.
Autism Adulthood. 2021 Mar 1;3(1):18-29. doi: 10.1089/aut.2020.0014. Epub 2021 Mar 18.
In this commentary, we describe how language used to communicate about autism within much of autism research can reflect and perpetuate ableist ideologies (i.e., beliefs and practices that discriminate against people with disabilities), whether or not researchers intend to have such effects. Drawing largely from autistic scholarship on this subject, along with research and theory from disability studies and discourse analysis, we define ableism and its realization in linguistic practices, provide a historical overview of ableist language used to describe autism, and review calls from autistic researchers and laypeople to adopt alternative ways of speaking and writing. Finally, we provide several specific avenues to aid autism researchers in reflecting on and adjusting their language choices.
In the past, autism research has mostly been conducted by nonautistic people, and researchers have described autism as something bad that should be fixed. Describing autism in this way has negative effects on how society views and treats autistic people and may even negatively affect how autistic people view themselves. Despite recent positive changes in how researchers write and speak about autism, "ableist" language is still used. language refers to language that assumes disabled people are inferior to nondisabled people. We wrote this article to describe how ableism influences the way autism is often described in research. We also give autism researchers strategies for avoiding ableist language in their future work. We believe that ableism is a "system of discrimination," which means that it influences how people talk about and perceive autism whether or not they are aware of it, and regardless of whether or not they actually believe that autistic people are inferior to nonautistic people. We also believe that language choices are part of what perpetuates this system. Because of this, researchers need to take special care to determine whether their language choices reflect ableism and take steps to use language that is not ableist. Autistic adults (including researchers and nonresearchers) have been writing and speaking about ableist language for several decades, but nonautistic autism researchers may not be aware of this work. We have compiled this material and summarized it for autism researchers. We recommend that researchers understand what ableism is, reflect on the language they use in their written and spoken work, and use nonableist language alternatives to describe autism and autistic people. For example, many autistic people find terms such as "special interests" and "special needs" patronizing; these terms could be replaced with "focused interests" and descriptions of autistic people's specific needs. Medicalized/deficit language such as "at risk for autism" should be replaced by more neutral terms such as "increased likelihood of autism." Finally, ways of speaking about autism that are not restricted to particular terms but still contribute to marginalization, such as discussion about the "economic burden of autism," should be replaced with discourses that center the impacts of social arrangements on autistic people. Language is a powerful means for shaping how people view autism. If researchers take steps to avoid ableist language, researchers, service providers, and society at large may become more accepting and accommodating of autistic people.
在这篇评论中，我们描述了在许多自闭症研究中用于交流自闭症的语言如何反映并延续残障歧视意识形态（即歧视残疾人的信念和做法），无论研究人员是否有意产生此类影响。我们主要借鉴了关于这一主题的自闭症学术研究，以及残疾研究和话语分析的研究与理论，定义了残障歧视及其在语言实践中的体现，提供了用于描述自闭症的残障歧视语言的历史概述，并回顾了自闭症研究人员和普通民众呼吁采用替代性的言说和写作方式。最后，我们提供了几条具体途径，以帮助自闭症研究人员反思并调整他们的语言选择。
过去，自闭症研究大多由非自闭症患者进行，研究人员将自闭症描述为一种应该被纠正的不良状况。以这种方式描述自闭症会对社会看待和对待自闭症患者的方式产生负面影响，甚至可能对自闭症患者如何看待自己产生负面影响。尽管最近研究人员在撰写和谈论自闭症方面有了积极变化，但“残障歧视”语言仍在使用。残障歧视语言是指那种假定残疾人不如非残疾人的语言。我们撰写本文是为了描述残障歧视如何影响研究中经常描述自闭症的方式。我们还为自闭症研究人员提供了在未来工作中避免使用残障歧视语言的策略。我们认为残障歧视是一种“歧视系统”，这意味着它会影响人们谈论和理解自闭症的方式，无论他们是否意识到这一点，也无论他们是否真的认为自闭症患者不如非自闭症患者。我们还认为语言选择是使这个系统长期存在的部分因素。因此，研究人员需要格外注意确定他们的语言选择是否反映了残障歧视，并采取措施使用非残障歧视性语言。自闭症成年人（包括研究人员和非研究人员）几十年来一直在撰写和谈论残障歧视语言，但非自闭症的自闭症研究人员可能并未意识到这项工作。我们整理了这些材料并为自闭症研究人员进行了总结。我们建议研究人员了解什么是残障歧视，反思他们在书面和口头工作中使用的语言，并使用非残障歧视性的语言替代词来描述自闭症和自闭症患者。例如，许多自闭症患者觉得“特殊兴趣”和“特殊需求”等术语带有优越感；这些术语可以用“专注兴趣”和对自闭症患者具体需求的描述来替代。诸如“患自闭症风险”这样的医学化/缺陷性语言应该用更中性的术语如“自闭症可能性增加”来替代。最后，那些不限于特定术语但仍会导致边缘化的谈论自闭症的方式，比如关于“自闭症经济负担”的讨论，应该用以社会安排对自闭症患者的影响为中心的论述来替代。语言是塑造人们如何看待自闭症的有力手段。如果研究人员采取措施避免使用残障歧视语言，研究人员、服务提供者和整个社会可能会对自闭症患者更加接纳和包容。
