Which terms should be used to describe autism? Perspectives from the UK autism community
Which terms should be used to describe autism? Perspectives from the UK autism community
复制标题
DOI：
10.1177/1362361315588200
复制
发表时间：
2016-05-01
期刊：
影响因子：
5.2
通讯作者：
Pellicano, Elizabeth
中科院分区：
文献类型：
--
作者：
Kenny, Lorcan;Hattersley, Caroline;Pellicano, Elizabeth
最近的公开讨论表明，关于自闭症是什么以及应该被描述的方式有很多分歧。这项研究试图引出英国自闭症社区成员-自闭症患者，父母和他们更广泛的支持网络-关于他们用来描述自闭症的术语的观点和偏好。共有3470名英国居民参与了一项在线调查，调查内容是他们描述自闭症的首选方式以及他们这种偏好的理由。结果清楚地表明，人们使用许多术语来描述自闭症。最受认可的术语是自闭症和自闭症谱系障碍，其次是自闭症谱系障碍，社区团体对此达成了共识。然而，各小组在若干术语的使用上意见不一。“自闭症”一词得到了很大比例的自闭症成年人、家庭成员/朋友和父母的认可，但得到专业人士认可的却少得多;“自闭症患者”得到了近一半的专业人士的认可，但得到自闭症成年人和父母认可的却少得多。对一个开放式问题的定性分析揭示了受访者偏好的原因。这些研究结果表明，没有一种描述自闭症的方法被英国自闭症社区普遍接受和偏爱，一些分歧似乎根深蒂固。
Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members - autistic people, parents and their broader support network - about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were autism' and on the autism spectrum', and to a lesser extent, autism spectrum disorder', for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term autistic' was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; person with autism' was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents' preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK's autism community and that some disagreements appear deeply entrenched.