TY - JOUR
T1 - Attitudes of the autism community to early autism research
AU - Fletcher-Watson, Sue
AU - Apicella, Fabio
AU - Auyeung, Bonnie
AU - Beranova, Stepanka
AU - Bonnet-Brilhault, Frederique
AU - Canal-Bedia, Ricardo
AU - Charman, Tony
AU - Chericoni, Natasha
AU - Conceição, Inês C.
AU - Davies, Kim
AU - Farroni, Teresa
AU - Gomot, Marie
AU - Jones, Emily
AU - Kaale, Anett
AU - Kapica, Katarzyna
AU - Kawa, Rafal
AU - Kylliäinen, Anneli
AU - Larsen, Kenneth
AU - Lefort-Besnard, Jeremy
AU - Malvy, Joelle
AU - Manso De Dios, Sara
AU - Markovska-Simoska, Silvana
AU - Millo, Inbal
AU - Miranda, Natercia
AU - Pasco, Greg
AU - Pisula, Ewa
AU - Raleva, Marija
AU - Rogé, Bernadette
AU - Salomone, Erica
AU - Schjolberg, Synnve
AU - Tomalski, Przemysław
AU - Vicente, Astrid M.
AU - Yirmiya, Nurit
PY - 2016/3/14
Y1 - 2016/3/14
N2 - 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.
AB - 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.
KW - autism spectrum disorder
KW - development
KW - ethics
KW - infancy
KW - public engagement
UR - http://www.scopus.com/inward/record.url?scp=85002701925&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85002701925&partnerID=8YFLogxK
U2 - 10.1177/1362361315626577
DO - 10.1177/1362361315626577
M3 - Article
AN - SCOPUS:85002701925
VL - 21
SP - 61
EP - 74
JO - Autism
JF - Autism
SN - 1362-3613
IS - 1
ER -