What do parents of children with autism expect from participation in research? A community survey about early autism studies.
Parents skip early autism studies that lack an intervention, so build one in to boost recruitment.
01Research in Context
What this study did
Fletcher-Watson et al. (2019) asked parents of young autistic kids what they want from early autism research.
They used a community survey. Parents shared what would make them join a study.
What they found
Half of parents said they will not sign up unless the study offers an intervention.
Parents felt positive about research, but they want real help for their child, not just tests.
How this fits with other research
Tromans et al. (2018) show most autism trials are tiny. Sue’s finding explains why: studies without an active treatment lose half of possible families.
Jurek et al. (2023) add that parents who do join parent-mediated programs feel stress yet still value the work. The two papers together say, “Offer treatment, then support the parents hard.”
Rojas-Torres et al. (2020) confirm that parent-led early ABA works. Sue et al. simply show parents already knew this and vote with their feet.
Why it matters
If you run or recruit for an early autism study, build in a real intervention arm. Advertise coaching, parent training, or direct therapy. You will double enrollment and keep families engaged.
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02At a glance
03Original 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.
Autism : the international journal of research and practice, 2019 · doi:10.1177/1362361317728436