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简要报告:当我无法再支持我自闭症的亲属时会发生什么?自闭症成年人家属对未来的担忧。

Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults.

机构信息

Faculty of Medical Sciences, Institute of Neuroscience, Newcastle University, Newcastle Upon Tyne, UK.

National Autistic Society, Newcastle Upon Tyne, UK.

出版信息

J Autism Dev Disord. 2017 Nov;47(11):3659-3668. doi: 10.1007/s10803-017-3254-6.

Abstract

Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were "their needs won't be met" (77% worried weekly), "whether they will be happy" (72% worried weekly) and "who will care for them" (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future.

摘要

自闭症患者及其成年后面临的问题知之甚少。家庭成员通常是自闭症成年患者的主要照顾者,他们经常对未来的情况和可供亲属使用的支持表示担忧。120 名自闭症成年患者的家庭成员完成了一项在线调查,以探讨他们对亲属未来的担忧。最受关注的问题是“他们的需求得不到满足”(77%的人每周都在担心)、“他们是否会快乐”(72%的人每周都在担心)和“谁来照顾他们”(58%的人每周都在担心)。研究结果强调了通过与政府政策、地方委托和慈善机构合作,实施结构化和及时支持的重要性,以帮助家庭成员及其自闭症亲属为未来做好准备。

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