Fletcher-Watson Sue, Apicella Fabio, Auyeung Bonnie, Beranova Stepanka, Bonnet-Brilhault Frederique, Canal-Bedia Ricardo, Charman Tony, Chericoni Natasha, Conceição Inês C, Davies Kim, Farroni Teresa, Gomot Marie, Jones Emily, Kaale Anett, Kapica Katarzyna, Kawa Rafal, Kylliäinen Anneli, Larsen Kenneth, Lefort-Besnard Jeremy, Malvy Joelle, Manso de Dios Sara, Markovska-Simoska Silvana, Millo Inbal, Miranda Natercia, Pasco Greg, Pisula Ewa, Raleva Marija, Rogé Bernadette, Salomone Erica, Schjolberg Synnve, Tomalski Przemysław, Vicente Astrid M, Yirmiya Nurit
University of Edinburgh, UK
Stella Maris Foundation, Pisa, Italy.
Autism. 2017 Jan;21(1):61-74. doi: 10.1177/1362361315626577. Epub 2016 Mar 14.
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.
对婴儿自闭症早期迹象的调查已成为自闭症研究的一个重要子领域。这项工作引发了一些特定的伦理问题，比如使用“有风险”这样的表述、向家长传达研究结果，以及已登记参与研究的婴儿成年后的未来前景。本研究旨在基于对自闭症群体成员观点的理解来开展这一研究领域的工作。在通过焦点小组确定主题之后，一项在线调查被分发给了11个欧洲国家的成年自闭症患者、自闭症儿童的家长以及健康和教育领域的从业者。调查受访者（n = 2317）对早期自闭症研究持积极态度，他们在该领域的优先事项以及描述婴儿研究参与者的首选措辞方面存在显著重叠。然而，也存在一些差异，包括成年自闭症患者相对于其他群体对早期自闭症研究的总体支持度较低，以及除医疗从业者外的所有群体都不喜欢用“有风险”一词来描述婴儿参与者。总体研究结果表明，欧洲的自闭症群体支持早期自闭症研究。研究人员应继续考虑群体观点，努力维持这种支持。
