Authors
Sue Fletcher-Watson, Kenneth Larsen, Erica Salomone, COST ESSEA Working Groups
Publication date
2019/1
Journal
Autism
Volume
23
Issue
1
Pages
175-186
Publisher
SAGE Publications
Description
Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service quality ratings and higher rates of intellectual disability among their children. Parents valued the scientific goals of research, but half of parents also reported that an intervention component would be an essential prerequisite for them to participate in research. If enrolled in a study, parents were positive about most commonly used measures though less favourably disposed towards brain scans for children. They …
Total citations
2018201920202021202220232024242102317