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Attitudes of the autism community to early autism research

2016-03-14Journal article Restricted access
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dc.contributor.authorFletcher-Watson, S.
dc.contributor.authorApicella, F.
dc.contributor.authorAuyeung, B.
dc.contributor.authorBeranova, S.
dc.contributor.authorBonnet-Brilhault, F.
dc.contributor.authorCanal-Bedia, R.
dc.contributor.authorCharman, T.
dc.contributor.authorChericoni, N.
dc.contributor.authorConceição, I.C.
dc.contributor.authorDavies, K.
dc.contributor.authorFarroni, T.
dc.contributor.authorGomot, M.
dc.contributor.authorJones, E
dc.contributor.authorKaale, A.
dc.contributor.authorKapica, K.
dc.contributor.authorKawa, R.
dc.contributor.authorKylliäinen, A.
dc.contributor.authorLarsen, K.
dc.contributor.authorLefort-Besnard, J.
dc.contributor.authorMalvy, J.
dc.contributor.authorManso de Dios, S.
dc.contributor.authorMarkovska-Simoska, S.
dc.contributor.authorMillo, I.
dc.contributor.authorMiranda, N.
dc.contributor.authorPasco, G.
dc.contributor.authorPisula, E.
dc.contributor.authorRaleva, M.
dc.contributor.authorRogé, B.
dc.contributor.authorSalomone, E.
dc.contributor.authorSchjolberg, S.
dc.contributor.authorTomalski, P.
dc.contributor.authorVicente, A.M.
dc.contributor.authorYirmiya, N.
dc.date.accessioned2016-06-23T13:54:45Z
dc.date.available2017-03-15T01:30:10Z
dc.date.issued2016-03-14
dc.description.abstractInvestigation 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.pt_PT
dc.description.sponsorshipThis work was supported by the European Co-operation in Science and Technology (COST) Action BM1004 Enhancing the Scientific Study of Early Autism (ESSEA).pt_PT
dc.identifier.citationAutism. 2017 Jan;21(1):61-74.doi. 10.1177/1362361315626577. Epub 2016 Mar 14.pt_PT
dc.identifier.doi10.1177/1362361315626577pt_PT
dc.identifier.issn1362-361
dc.identifier.urihttp://hdl.handle.net/10400.18/3856
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherSAGE Publications/ The National Autistic Societypt_PT
dc.relation.publisherversionhttp://aut.sagepub.com/content/early/2016/03/11/1362361315626577.longpt_PT
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/pt_PT
dc.subjectAutism Spectrum Disorderpt_PT
dc.subjectDevelopmentpt_PT
dc.subjectEthicspt_PT
dc.subjectInfancypt_PT
dc.subjectPublic Engagementpt_PT
dc.subjectPerturbações do Desenvolvimento Infantil e Saúde Mentalpt_PT
dc.titleAttitudes of the autism community to early autism researchpt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.endPage14pt_PT
oaire.citation.startPage1pt_PT
rcaap.rightsembargoedAccesspt_PT
rcaap.typearticlept_PT

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