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自闭症患儿家长与自己患有自闭症的孩子谈论自闭症的观点和经历。

Autistic parents' views and experiences of talking about autism with their autistic children.

作者信息

Crane Laura, Lui Lok Man, Davies Jade, Pellicano Elizabeth

机构信息

University College London, UK.

Macquarie University, Australia.

出版信息

Autism. 2021 May;25(4):1161-1167. doi: 10.1177/1362361320981317. Epub 2021 Jan 4.

Abstract

Previous research examining how parents talk about autism with their children has tended to focus on parents who are not autistic themselves. We collected information on this topic from 34 autistic parents of autistic children (most of whom had told their children about their diagnosis). We found similarities, but also differences, between the views and experiences of autistic parents in this research and those reported in previous research (in studies of largely non-autistic parents). Similarities include the following: it is important to be open and honest about the diagnosis; the diagnosis should be introduced/discussed as early as possible; discussions should be tailored to each individual child's needs; and we should not overlook the challenges associated with autism, but it is important to focus on positive aspects too. Differences include the following: autistic parents used personal experiences in conversations about autism, which was felt to result in increased understanding and empathy with their children; autistic parents overwhelmingly focused on more positive aspects of an autism diagnosis; our sample did not express concerns that discussions could have negative consequences too (e.g. making children more anxious); and autistic parents did not want or need professional support to talk about autism with their children (instead, they felt confident in using their own knowledge/experiences to guide discussions).

摘要

以往关于父母如何与孩子谈论自闭症的研究往往聚焦于自身并非自闭症患者的父母。我们从34位自闭症孩子的自闭症父母那里收集了关于这个话题的信息(其中大多数已经告知孩子他们的诊断结果)。我们发现,在这项研究中自闭症父母的观点和经历与以往研究(主要是关于非自闭症父母的研究)所报告的观点和经历之间既有相似之处,也有不同之处。相似之处包括:对诊断结果保持坦诚很重要;应尽早介绍/讨论诊断结果;讨论应根据每个孩子的需求进行调整;我们不应忽视与自闭症相关的挑战,但关注积极方面也很重要。不同之处包括:自闭症父母在关于自闭症的谈话中会运用个人经历,这被认为能增进孩子的理解和同理心;自闭症父母绝大多数更关注自闭症诊断的积极方面;我们的样本没有表达出对讨论可能产生负面后果(比如让孩子更焦虑)的担忧;而且自闭症父母在与孩子谈论自闭症时不希望也不需要专业支持(相反,他们对利用自己的知识/经验来引导讨论充满信心)。

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