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自闭症专家技能:对自闭症研究中知识生成的批判性反思。

Autistic expertise: a critical reflection on the production of knowledge in autism studies.

作者信息

Milton Damian Em

机构信息

University of Birmingham, UK

出版信息

Autism. 2014 Oct;18(7):794-802. doi: 10.1177/1362361314525281. Epub 2014 Mar 17.

Abstract

The field of autism studies is a highly disputed territory within which competing contradictory discourses abound. In this field, it is the voices and claims of autistic people regarding their own expertise in knowledge production concerning autism that is most recent in the debate, and traditionally the least attended to. In this article, I utilise the theories of Harry Collins and colleagues in order to reflect upon and conceptualise the various claims to knowledge production and expertise within the field of autism studies, from the perspective of an author who has been diagnosed as being on the autism spectrum. The notion that autistic people lack sociality is problematised, with the suggestion that autistic people are not well described by notions such as the 'social brain', or as possessing 'zero degrees of cognitive empathy'. I then argue, however, that there is a qualitative difference in autistic sociality, and question to what extent such differences are of a biological or cultural nature, and to what extent interactional expertise can be gained by both parties in interactions between autistic and non-autistic people. In conclusion, I argue that autistic people have often become distrustful of researchers and their aims, and are frequently frozen out of the processes of knowledge production. Such a context results in a negative feedback spiral with further damage to the growth of interactional expertise between researchers and autistic people, and a breakdown in trust and communication leading to an increase in tension between stakeholder groups. The involvement of autistic scholars in research and improvements in participatory methods can thus be seen as a requirement, if social research in the field of autism is to claim ethical and epistemological integrity.

摘要

自闭症研究领域是一个争议极大的领域,充斥着相互矛盾的论述。在这个领域中,自闭症患者关于自身在自闭症知识生产方面专业知识的声音和主张在辩论中是最新出现的,且传统上最不受关注。在本文中,我运用哈里·柯林斯及其同事的理论,从一名被诊断为自闭症谱系患者的作者的视角,对自闭症研究领域内各种关于知识生产和专业知识的主张进行反思和概念化。自闭症患者缺乏社交能力这一观念受到质疑,有人认为用“社交大脑”等概念或“零认知同理心”来描述自闭症患者并不恰当。然而,我接着指出,自闭症患者的社交存在质的差异,并质疑这种差异在多大程度上是生物学或文化性质的,以及在自闭症患者与非自闭症患者的互动中双方能在多大程度上获得互动专业知识。总之,我认为自闭症患者常常对研究人员及其目标产生不信任,并且经常被排除在知识生产过程之外。这样的情况会导致负面反馈循环,进一步损害研究人员与自闭症患者之间互动专业知识的增长,破坏信任和沟通,导致利益相关群体之间的紧张关系加剧。因此,如果自闭症领域的社会研究要宣称具备伦理和认识论完整性,那么自闭症学者参与研究以及改进参与式方法可被视为一项必要条件。

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