As most people reading this post will probably already know, SARG recently re-launched with a one day event in Edinburgh. While SARG is principally a group led by researchers, for researchers, the event was attended by those who have an interest in autism research for a variety of reasons. Autistic people, those with autistic family members, and practitioners from health, education, social care and the charitable sector were all well represented. This variety made for a hybrid event, which feedback indicates was very successful.
One component of the day was specifically designed to level the playing field. Everyone attending split into small groups to discuss the topic What do we need to make Scottish autism research great? The first goal was to define ‘great’ – something on which we assumed different stakeholders would struggle to agree. However, as this report indicates, there was surprisingly high consensus on the most important goals of autism research. Nearly everyone wanted to see a focus on practical outcomes, delivering real benefits, measured accurately and defined in partnership with communities. The researchers departed a little from other groups – which isn’t to say they disagreed with these goals. They simply had other factors to weigh-up as well: aspects such as methodological quality, theoretical underpinning and interdisciplinary collaboration were all important. It is interesting to consider how many of those issues mentioned by researchers, but not other interested parties, derive from the structures in which most researchers are currently employed and rewarded. For example, Universities and funding bodies alike are putting great emphasis on interdisciplinary work, which bridges traditional departmental boundaries. It is unclear whether, for the autism community, this will result in ‘great’ research.
The second half of the discussion considered what resources might be necessary to achieve ‘great’ autism research in Scotland. Many good ideas were presented and are listed in detail in the summary document. Of note however was the strong emphasis on partnerships across stakeholder categories. It was widely acknowledged that such relationships are hard to achieve, requiring commitment and time on both sides. In light of the recent Action on Autism Research seminar series, drawing on organisations such as Autism Network Scotland, and with the resurgence of SARG, we feel confident that Scotland is on the right path to building meaningful and long-lasting connections. There was also strong recognition of the role of policy-makers and funders in the delivery of great research – groups called for more co-ordinated funding, transparency in priority-setting and specific funding to translate research into practice. All fantastic ideas, some of which are being enacted to some degree, as in this priority-setting endeavour and this UK-wide seminar series.
- Connections. Between researchers, the community and practitioners, in both directions.
- Insight:Researchers understanding what needs to be done ‘on the ground’. Practitioners and communities understanding constraints on research.
- Impact: Translation of research evidence into practice recommendations. Policy based on the cost of doing something versus the higher cost of doing nothing.
- Outcomes. High quality measurement of meaningful progress.
In addition, three challenges to effective, engaged research were also identified. These are:
- Scale: research tends to deal in ‘average’ behaviour in a group, but practitioners and community members need individualised supports
- Funding: the perceived priorities of major research funders seem rarely to correspond with community priorities
- Time: this resource is always in short supply and prevents practitioners from drawing on research evidence, researchers from sharing their findings, and community members from either taking part in research, or sifting through the myriad options being offered by commercial operators.
In consideration of these hallmarks of ‘great’ research, and bearing in mind the agreed constraints, we have the listed some recommendations for all those invested in autism research. However, if you’re too exhausted to get that far (and I wouldn’t blame you) they can be summarised as follows: keep in touch, do your bit, please be patient.
- All stakeholders in autism research – researchers, practitioners from multiple disciplines and settings, autistic people and their families – need to seize opportunities to engage with each other in order to promote great research, and research-based practice.
- Acknowledging the lack of time and structures to support collaborative working, the autism community in Scotland (including practitioners and researchers) should all try to make time to build relationships, share information and develop meaningful partnerships.
- Researchers should evaluate and share results regarding the experiences of participants in their research, considering aspects such as the acceptability of any assessments and the experience of all family members involved in an intervention study.
- Researchers in Scotland can be a team, working together to create a strong foundation for autism services and practice in Scotland, building on strengths and avoiding needless competition or duplication
- Non-research stakeholders are requested to respect the constraints placed on researchers by their employing institutions, ethics review boards, funders, requirement for scientific rigour, and available resources. All of these can make directly applicable research outcomes very hard to achieve.