What are peoples’ views and perspectives on current UK autism research?
between researchers and the communities they study.
In the second part of the consultation, participants were presented with the summary of UK research funding (see Figure 1, p.23). In the context of participants’ priorities, it is not surprising that, when asked how satisfied they were with the current funding pattern for UK autism research, the four stakeholder groups reported being dissatisfied. Researchers were the most satisfied of the four and autistic adults the least. Autistic adults, family members and practitioners also felt that this pattern did “not really” map on to their own priorities, while academics felt that it “somewhat” did.
In the UK, this need for partnership in the research process is recognised to varying degrees by government funding agencies including the Research Councils and the National Institute of Health Research (NIHR). Research Councils UK (RCUK) is committed to funding research that makes a significant impact on society. RCUK states that “working in partnership generates new ideas, policies, and insights into stakeholders’ needs, but also leads to an improved understanding of the research and skills needed for particular sectors.”24 Deliberate expansion of public participation has also been seen across the National Health Service (www.invo.org.uk).
In focus groups and interviews, many people suggested not that we should invest less in certain research areas but that research funding should be more evenly distributed amongst the primary research areas – that is, that autism research needed to be much more “balanced” than it is currently. “Philanthropic groups in the US have been able to change the conversation around autism; to help validate the advice parents can access, to understand how best to work with their kids, to help their children fulfill their potential. My sense is that we’ve not done as well as that.” Charitable funder
What are peoples’ experiences of engaging with researchers? An increasing priority for research funding agencies across science – both public and philanthropic – is that research should be a partnership
To date, in the autism field there is little information as to how successful researchers are at such forms of engagement and, furthermore, how satisfied nonresearchers (autistic people, family members and practitioners) are with the attempts that researchers make at such engagement activities. This consultation offered a unique opportunity to address this question. We asked both researchers and nonresearchers about how frequently they experienced such engagement activities (see definitions opposite) and how satisfied they were with these experiences. While the majority of researchers said that they ‘frequently’ or ‘very frequently’ engaged in public dissemination and dialogue only a minority of autistic people, family members and practitioners shared