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Autism. 2017 Jan;21(1):61-74. Epub 2016 Mar 14.

Attitudes of the autism community to early autism research.

Author information

1
University of Edinburgh, UK sue.fletcher-watson@ed.ac.uk.
2
Stella Maris Foundation, Pisa, Italy.
3
University of Edinburgh, UK.
4
Charles University, Prague, Czech Republic.
5
Université François-Rabelais de Tours, France.
6
Universidad de Salamanca, Spain.
7
King's College London, UK.
8
Instituto Nacional de Saúde Doutor Ricardo Jorge, Biosystems and Integrative Sciences Institute, Portugal.
9
Birkbeck College, UK.
10
Università degli Studi di Padova, Italy.
11
Oslo University Hospital, Norway.
12
University of Warsaw, Poland.
13
University of Tampere, Finland.
14
Macedonian Academy of Sciences and Arts, Macedonia (FYROM).
15
The Hebrew University of Jerusalem, Israel.
16
University Clinic of Psychiatry, Macedonia (FYROM).
17
Université Jean Jaurès Toulouse, Institut Universitaire de France (IUF), France.
18
Norwegian Institute of Public Health, Norway.

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.

KEYWORDS:

autism spectrum disorder; development; ethics; infancy; public engagement

PMID:
26975669
DOI:
10.1177/1362361315626577
[Indexed for MEDLINE]

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