Attitudes of the autism community to early autism research
Attitudes of the autism community to early autism research
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DOI：
10.1177/1362361315626577
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发表时间：
2017-01-01
期刊：
影响因子：
5.2
通讯作者：
Yirmiya, Nurit
中科院分区：
文献类型：
--
作者：
Fletcher-Watson, Sue;Apicella, Fabio;Yirmiya, Nurit
对婴儿自闭症早期症状的研究已经成为自闭症研究的一个重要分支领域。这项工作引发了特定的伦理问题，如使用“风险”语言，向父母传达研究结果，以及参与研究的婴儿成年后的未来前景。本研究的目的是将这一研究领域建立在对自闭症群体成员观点的理解之上。在焦点小组确定主题之后，向11个欧洲国家的自闭症成年人、自闭症儿童的父母以及卫生和教育机构的从业人员分发了一份在线调查。调查对象（n=2317）对早期自闭症研究持积极态度，他们对该领域的优先级和描述婴儿研究参与者的首选语言有显著的重叠。然而，也存在一些差异，包括相对于其他群体，自闭症成年人对早期自闭症研究的总体支持程度较低，以及除了医疗从业人员外，所有群体都不喜欢用“有风险”这个词来描述婴儿参与者。总的来说，这些发现表明欧洲的自闭症社区支持早期自闭症研究。研究人员应该通过继续考虑社区观点来努力保持这一点。
Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as use of at-risk' language, communicating study findings to parents and the future perspective of enrolled infants when they reach adulthood. This study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism and practitioners in health and education settings across 11 European countries. Survey respondents (n=2317) were positively disposed towards early autism research, and there was significant overlap in their priorities for the field and preferred language to describe infant research participants. However, there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase at-risk' to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account.