What do parents of children with autism expect from participation in research? A community survey about early autism studies

Abstract

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 valued direct contact with the research team and openness in data sharing. We interpret our findings in terms of lessons for the early autism research community and for stakeholder engagement projects.

“It’s Like Stealing What Should be Theirs.” An Exploration of the Experiences and Perspectives of Parents and Educational Practitioners on Hebrew–English Bilingualism for Jewish Autistic Children

“…Participants preferring to talk to the researcher were interviewed via Skype or Zoom software. This virtual, face-to-face, direct engagement with parents via video-call accorded with research finding that parents of autistic children value direct contact with research teams (Fletcher-Watson, Larsen, & Salomone, 2019 ). The interview schedule featured 14 questions focussed on bilingualism, monolingual approaches and decision-making factors, and was administered in a semi-structured way, allowing interview discretion to follow up on certain points.…”

Making the future together: Shaping autism research through meaningful participation

“…Historically, parents of autistic children have been listened to somewhat (Silverman and Brosco, 2007), and autistic people less so. Parents, like practitioners and third-sector workers, can advocate on behalf of their children and may often be stakeholders in research themselves – they should be included in the participatory agenda (Fletcher-Watson et al, 2017b). For this reason, we have referred throughout to engagement with both the autistic and the broader autism community.…”

Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?

“…22 Studies of parental reasons for allowing child participation in observational research also identified altruism and perceived personal benefit as reasons for participation, [23][24][25][26][27] along with reputation of, or trust in, the investigators or institution conducting the research. 28 Most were conducted outside the United States (US), and only two reported reasons for participation in autism spectrum disorder (ASD) or neurodevelopment research. 28,29 The few studies conducted in the United States have examined reasons within hypothetical or general health research, 28,30,31 biobanking for genetics research, [29][30][31][32] or focussed on specific medical conditions.…”

“…28 Most were conducted outside the United States (US), and only two reported reasons for participation in autism spectrum disorder (ASD) or neurodevelopment research. 28,29 The few studies conducted in the United States have examined reasons within hypothetical or general health research, 28,30,31 biobanking for genetics research, [29][30][31][32] or focussed on specific medical conditions. 15,17 The range of reasons reported may be truncated because many studies provided only fixed-choice responses.…”