Abstract
The key to progress is often an appreciation that we share a common goal. In autism research, most people would agree that the fundamental goal is to help autistic people live happier, healthier lives. But this has often been overlooked in the many attempts to drive change by autism researchers, clinicians, parent groups and the autistic rights movement – groups that have all expanded massively over the last 25 years. The perspective of one group has, at least at times, been over-simplified, misunderstood or misrepresented by others over this period. Examples of this issue include claims that researchers or research funders do not care about autistic people, that parents do not understand the potential harm they are doing to their children using certain treatments, and that some autistic people do not adequately or appropriately acknowledge the disadvantages which autistic people face as a group (Silberman, 2015). As in society, more generally, my sense is that these portrayals of other groups are often neither valid nor constructive; they sacrifice nuance in favour of an overly simplistic populist narrative. Differences of opinion between and within groups are much more subtle, varied and complex than is commonly proposed.
Differences are resolvable, and a common goal is achievable, but it requires time, patience, trust, understanding, compromise and mutual respect. As an autistic adult, a scientist, and now the Director of Science for Autistica, the UK’s leading autism research charity, I believe we are closer than ever before to genuine collaboration across the autism community. Working together, I believe we can deliver faster progress for autistic people and their families by providing new and better ways to be involved in research.
Indeed, the report A Future Made Together commissioned by the UK charity, Research Autism, highlighted two major challenges for UK autism research: a lack of authentic involvement of autistic people and families in research (Pellicano et al., 2014a, 2014b) and a disconnect between research investment and the priorities of autistic people and their families.
At Autistica, we are trying to turn this around. We acknowledge that autism research has often not been effective at including autistic people in the research process and that the vision and goals for research over many years were crude and failed to accurately reflect the views of the community. These failures limit the impact of research for autistic people and have often left researchers wasting their time, pursuing questions that either are not relevant or reflect a limited understanding of what autism is.
For these reasons, Autistica undertook a consultation exercise with the autism community to understand in detail what autistic people and families wanted from research. The One in a Hundred report highlighted the desire for research in three areas: (1) early intervention to support families immediately following diagnosis, (2) research to tackle the mental health problems which often have the greatest impact on autistic people’s lives and (3) autism and ageing, an under-researched and poorly understood topic of global importance (Wallace et al., 2013). We have since reflected these views through our subsequent research funding strategy. For the first time in Autistica’s history, autistic people have been named as co-researchers, a step which has been enormously beneficial to the project’s outputs. Autistic people and parents are now at the heart of everything we do, including involvement in our science advisory group, peer review process, scientific review panel and other committees.
We recently took this commitment to community-derived priorities one step further by leading a James Lind Alliance (JLA) Priority Setting Partnership in partnership with local and national autism charities, aiming to set research priorities for Autistica and for all research funders. The JLA is an independent, internationally recognised non-profit organisation with an established transparent process bringing together communities to identify and prioritise research, while taking into account existing evidence. This meant that, for the first time, autistic people, families and professionals worked together to create their own collaboratively generated set of research questions backed by all sections of the autism community (Cusack and Sterry, 2016). These results will now both inform our revised research strategy and influence other major funders such as the UK’s National Institute for Health Research.
But there is still more we can do. During the recent seminar series ‘Shaping Autism Research’ (www.shapingautismresearch.co.uk), funded by the UK’s Economic and Social Research Council (ESRC), autistic and non-autistic researchers and non-researchers discussed the need to educate early career researchers on the importance of involving autistic people in research at all levels. We agree and are committed to further action. We will develop training for early career researchers and are keen to identify sustainable ways to help autistic people get started in autism research.
While the need for change and for increased involvement of all stakeholders in research is urgent, it must be remembered that change takes time. Researchers are often unfamiliar with participatory research and regularly fail to account for the associated costs into grant budgets – despite Autistica stating that they would be viewed favourably. Such a move requires substantial changes in research design which are especially challenging at a time when funding remains scarce. This is why we will patiently, but persistently, make the case for participatory research and provide leadership by rewarding those committed to collaboration.
As a research funder, we are also clear that any money we spend must ultimately demonstrate that it can improve outcomes for autistic people – that includes the impact of participatory research not only on those involved in the research but also on the 700,000 autistic people in the United Kingdom. Hence, we must trial innovative methods for this kind of research with a gradual and progressive mindset, testing it against metrics such as the Public Involvement Assessment Framework and learning from other initiatives such as the Patient-Centred Outcomes Research Institute (PCORI) in the United States.
The history of many medical research, social and civil rights issues has been characterised by an initial disruptive phase highlighting key problems in their emergence. It is my view that autism research has just gone through such a phase where the need for research and involvement of different stakeholders has been highlighted (De la Porta and Diani, 2006).
But continued and circular disruption and finger-pointing described earlier ultimately creates divisions, not collaborations, and acts as a block to the progressive action we so desperately need. Other areas began to make progress when they realised different groups are often trying to achieve the same things but using different language. Thus, we must ensure we continue to engage in productive discussions between parents, researchers and autistic people, always cherishing, understanding and respecting different perspectives, knowledge and skills. I do not believe that any group alone can resolve the disadvantages that autistic people face.
If we work together, the opportunity is enormous. It is us – autistic people, parents, practitioners, researchers and research funders – who together can achieve the progress we all want to see: longer, happier and healthier lives for all autistic people and their families.