title: Attitudes of the autism community to early autism research.
abstract: 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.
authors.affiliation: University of Edinburgh, UK sue.fletcher-watson@ed.ac.uk.
authors.forename: Sue
authors.initials: S
authors.lastname: Fletcher-Watson
authors.affiliation: Stella Maris Foundation, Pisa, Italy.
authors.forename: Fabio
authors.initials: F
authors.lastname: Apicella
authors.affiliation: University of Edinburgh, UK.
authors.forename: Bonnie
authors.initials: B
authors.lastname: Auyeung
authors.affiliation: Charles University, Prague, Czech Republic.
authors.forename: Stepanka
authors.initials: S
authors.lastname: Beranova
authors.affiliation: Université François-Rabelais de Tours, France.
authors.forename: Frederique
authors.initials: F
authors.lastname: Bonnet-Brilhault
authors.affiliation: Universidad de Salamanca, Spain.
authors.forename: Ricardo
authors.initials: R
authors.lastname: Canal-Bedia
authors.affiliation: King's College London, UK.
authors.forename: Tony
authors.initials: T
authors.lastname: Charman
authors.affiliation: Stella Maris Foundation, Pisa, Italy.
authors.forename: Natasha
authors.initials: N
authors.lastname: Chericoni
authors.affiliation: Instituto Nacional de Saúde Doutor Ricardo Jorge, Biosystems and Integrative Sciences Institute, Portugal.
authors.forename: Inês C
authors.initials: IC
authors.lastname: Conceição
authors.affiliation: Birkbeck College, UK.
authors.forename: Kim
authors.initials: K
authors.lastname: Davies
authors.affiliation: Università degli Studi di Padova, Italy.
authors.forename: Teresa
authors.initials: T
authors.lastname: Farroni
authors.affiliation: Université François-Rabelais de Tours, France.
authors.forename: Marie
authors.initials: M
authors.lastname: Gomot
authors.affiliation: Birkbeck College, UK.
authors.forename: Emily
authors.initials: E
authors.lastname: Jones
authors.affiliation: Oslo University Hospital, Norway.
authors.forename: Anett
authors.initials: A
authors.lastname: Kaale
authors.affiliation: University of Warsaw, Poland.
authors.forename: Katarzyna
authors.initials: K
authors.lastname: Kapica
authors.affiliation: University of Warsaw, Poland.
authors.forename: Rafal
authors.initials: R
authors.lastname: Kawa
authors.affiliation: University of Tampere, Finland.
authors.forename: Anneli
authors.initials: A
authors.lastname: Kylliäinen
authors.affiliation: Oslo University Hospital, Norway.
authors.forename: Kenneth
authors.initials: K
authors.lastname: Larsen
authors.affiliation: Université François-Rabelais de Tours, France.
authors.forename: Jeremy
authors.initials: J
authors.lastname: Lefort-Besnard
authors.affiliation: Université François-Rabelais de Tours, France.
authors.forename: Joelle
authors.initials: J
authors.lastname: Malvy
authors.affiliation: Universidad de Salamanca, Spain.
authors.forename: Sara
authors.initials: S
authors.lastname: Manso de Dios
authors.affiliation: Macedonian Academy of Sciences and Arts, Macedonia (FYROM).
authors.forename: Silvana
authors.initials: S
authors.lastname: Markovska-Simoska
authors.affiliation: The Hebrew University of Jerusalem, Israel.
authors.forename: Inbal
authors.initials: I
authors.lastname: Millo
authors.affiliation: Instituto Nacional de Saúde Doutor Ricardo Jorge, Biosystems and Integrative Sciences Institute, Portugal.
authors.forename: Natercia
authors.initials: N
authors.lastname: Miranda
authors.affiliation: King's College London, UK.
authors.forename: Greg
authors.initials: G
authors.lastname: Pasco
authors.affiliation: University of Warsaw, Poland.
authors.forename: Ewa
authors.initials: E
authors.lastname: Pisula
authors.affiliation: University Clinic of Psychiatry, Macedonia (FYROM).
authors.forename: Marija
authors.initials: M
authors.lastname: Raleva
authors.affiliation: Université Jean Jaurès Toulouse, Institut Universitaire de France (IUF), France.
authors.forename: Bernadette
authors.initials: B
authors.lastname: Rogé
authors.affiliation: King's College London, UK.
authors.forename: Erica
authors.initials: E
authors.lastname: Salomone
authors.affiliation: Norwegian Institute of Public Health, Norway.
authors.forename: Synnve
authors.initials: S
authors.lastname: Schjolberg
authors.affiliation: University of Warsaw, Poland.
authors.forename: Przemysław
authors.initials: P
authors.lastname: Tomalski
authors.affiliation: Instituto Nacional de Saúde Doutor Ricardo Jorge, Biosystems and Integrative Sciences Institute, Portugal.
authors.forename: Astrid M
authors.initials: AM
authors.lastname: Vicente
authors.affiliation: The Hebrew University of Jerusalem, Israel.
authors.forename: Nurit
authors.initials: N
authors.lastname: Yirmiya
mesh_terms: D000328:Adult; D001294:Attitude to Health; D001321:Autistic Disorder / Q000523:psychology*; D035843:Biomedical Research; D005260:Female; D017144:Focus Groups; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology
keywords: autism spectrum disorder; development; ethics; infancy; public engagement