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自闭症诊断经历:对英国1000多名家长的调查。

Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom.

作者信息

Crane Laura, Chester James W, Goddard Lorna, Henry Lucy A, Hill Elisabeth

机构信息

City University London, UK

Goldsmiths, University of London, UK.

出版信息

Autism. 2016 Feb;20(2):153-62. doi: 10.1177/1362361315573636. Epub 2015 Mar 25.

Abstract

A sample of 1047 parents completed an online survey about their experiences and opinions regarding the process of attaining a diagnosis of autism spectrum disorder for their children. The results revealed that parents usually waited a year from when they first had concerns about their child's development before they sought professional help. On average, there was a delay of around 3.5 years from the point at which parents first approached a health professional with their concerns to the confirmation of an autism spectrum disorder diagnosis. Just over half of the parents surveyed were dissatisfied with the diagnostic process as a whole. Several factors predicted parents' overall levels of satisfaction with the diagnostic process, including the time taken to receive a diagnosis, satisfaction with the information provided at diagnosis, the manner of the diagnosing professional, the stress associated with the diagnostic process and satisfaction with post-diagnostic support. Post-diagnosis, the support (if any) that was provided to parents was deemed unsatisfactory, and this was highlighted as an area of particular concern among parents.

摘要

1047名家长参与了一项在线调查,内容涉及他们在孩子被诊断为自闭症谱系障碍过程中的经历和看法。结果显示,家长通常在首次对孩子的发育感到担忧一年后才寻求专业帮助。平均而言,从家长首次带着担忧向健康专家咨询到自闭症谱系障碍诊断得到确认,这一过程大约延迟了3.5年。接受调查的家长中,略多于一半的人对整个诊断过程不满意。有几个因素可以预测家长对诊断过程的总体满意度,包括获得诊断所需的时间、对诊断时所提供信息的满意度、诊断专家的态度、与诊断过程相关的压力以及对诊断后支持的满意度。诊断后,家长得到的支持(如果有的话)被认为不尽人意,这一点在家长中被特别强调为一个令人担忧的领域。

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