Doing autism research well: Building a participatory framework for autism research

We were delighted to see so many people (around 70!) from a good mix of backgrounds and experiences come along to the 4th seminar in our ESRC Shaping Autism Research series. This particular seminar focused on autistic involvement in autism research, or participatory autism research.

Day One …

To kick off the day, Liz Pellicano provided an overview of the A Future Made Together study, the results of which had provided the impetus for this seminar series. She reminded us that although there has been a substantial increase in research activity on autism during the past decade, little research has concentrated on the everyday needs of autistic people and their families and even less has been shaped directly by the autistic community. Liz went on to suggest that involving community members actively in research – beyond being a passive participant – is one key way of ensuring that a greater portion of research has an impact on those who need it most. She ended with a key question: how can we make sure that community involvement in research is genuinely participatory and not just tokenistic, where autistic people and other key stakeholders are co-producers of the research or in control of that research and its application? 

Before we got stuck into answering that question, we asked attendees to spend 15 minutes chatting with their neighbour or thinking to themselves about what participation means to them – so that they were primed and ready to discuss this issue in more detail for the workshop in the next session. 

The first part of Session 2 saw Peter Beresford, Professor of Citizen Participation at the University of Essex, and Simon Denegri, National Director for Patients and the Public in Research at the National Institutes for Health Research (NIHR), together in the panel titled, “Methods of participatory research”. Peter introduced us to three different types of participatory research, with increasing degrees of involvement: user involvement, collaborative research and user-controlled research. He emphasised that traditional research methods fail to recognise different forms of knowledge and who can make claims on knowledge. This meant that certain knowledge sources have been denied a voice in research – which he referred to as “epistemological injustice”. Instead, he stressed that we needed to be more inclusive in our process, especially of hitherto “unwanted voices” and to recognise diversity. Simon spoke from his wealth of experience at NIHR and suggested some key ways to make research more participatory, including (1) a strong belief that change can happen, (2) clear expectations and consequences if it doesn’t happen, (3) owning up to the principles of participatory research (4) and clarity around what we actually mean by “participatory research”. He emphasised that such research requires capacity – that participation doesn’t work unless it is funded, including resources (training) for all members. Simon asked us to consider two key questions: What is our long-term vision for autism research? And what can be our “quick wins”?. He also left us with some “grand challenges” or ways to measure our success, including (1) REACH (the extent to which people and communities are participating and involved in autism research), (2) RELEVANCE (the extent to which autism research reflects the autistic community’s priorities) and (3) REFINEMENT (showing how community involvement is adding value to autism research excellence). 

Kabie Brook provided the first plenary feedback for the day on Session 2’s panel discussion. She emphasised that co-production means many things to different people and relayed some of her own experiences of being involved (or not) in research and service provision initiatives. She asked attendees to consider several key questions, including: How can we move the conversations beyond this room? What are people’s experiences of involvement? And when the research is published, do the participants agree with how it is interpreted and disseminated? She stressed the need for relationships to be authentic. 

Session 3 examined the experiences of participatory methods from researchers outside the field of autism. Stan Papoulias from the Service User Research Enterprise at King’s College London gave us some excellent examples of projects that involved service users. She also asked us to be mindful of power inequalities and ways of making sure that service user voices get heard. Lisa Doughty, also from SURE, and Katie Bogart (from the Young People’s Mental Health Advisory Group), also made the case for greater involvement by service users in research. Katie talked about how she was part of a “hard-to-reach” group (young people), which actually is only “hard to reach” because researchers don’t know how to reach them! Katie explained how she was given training in research methods – including what research is, how it happens and what happens exactly – and was paid for her time, which enabled her to be more involved in the research. Finally, Sarah Lyall from the New Economics Foundation and Sandra Jacobs from Skills Network talked about community research focusing on the example of Skills Network’s “What’s our story” programme, which combined research and campaigning to address the issues faced by women in Lambeth, London. Like all the speakers on this panel, Sarah and Sandra emphasised that participatory research is hard work! But that it can be rewarding for community members (including learning new skills) and bringing fresh, creative thinking to projects. They stressed that relationships are key – ones that are open, honest and authentic in their interactions. 

Immediately following the panel discussion, the attendees dispersed into groups to consider more about what participation means to them, through an art-based workshop facilitated by Susy Ridout. You can find the outputs from this workshop here.

For the final session of Day One, we gave a special welcome to our Keynote Speaker, Prof. Christina Nicolaidis from Portland State University, USA. Christina introduced us to participatory approaches, noting that they have been traditionally used to address racial and ethnic disparities or improve outcomes in marginalised populations. She emphasised that a lack of inclusion in the research process can lead to low participation rates, poor science, questionable impact and continued disparities. To this end, Christina described how she co-founded, together with autistic self-advocate Dora Raymaker, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE). Although she noted that there are many different “flavours” of participatory research, AASPIRE have largely conducted Community Based Participatory Research (CBPR) in which there is equal partnership between researchers and non-researchers. She gave some wonderful and inspiring examples of some of the CBPR projects that she has been involved with AASPIRE and beyond – all of which she felt were hard work, but definitely worth it. One issue that arose during the Q&A was the challenges involving autistic people who have difficulties with spoken communication – something which Christina admitted that she had not yet mastered but something for us all to consider.  

Day Two

We were even more pleased to see so many people on the second day of the seminar! Day Two began with a 5-minute post-card exercise in which attendees were asked to think about the ONE thing that they had learnt about participation from Day One and to write it on their Shaping Autism Research postcards.

Following this exercise, we heard from co-organiser, Damian Milton, on the barriers and opportunities of participatory autism research. Damian began by describing some of the barriers to participatory research such as the ‘double empathy problem’ (a lack of mutual understanding between autistic and non-autistic perspectives), before giving some examples of participatory work in the fields of sociology and education. He then went on to describe aspects of his own research that highlighted the tensions and controversies between differing stakeholder groups and asked an important question regarding how researchers and practitioners act in terms of participation – who are we participating with? And what if these participants have widely divergent and often conflicting views? Damian suggested that what was needed was the building of capacity and collaborative communities of practice, where autistic experiential expertise was valued alongside other forms of expertise in the research process. As an example, Damian finished by talking about the Participatory Autism Research Collective (PARC) which he chairs at London South Bank University, as a group set up with these intentions in mind, but also talked about the difficulty of accessing funding for such projects.

Many of the discussions during Day One and also raised in Damian’s talk revolved around the financial costs of involving the autistic community in research. We were delighted therefore to have representatives from two funding agencies, Kate Adcock from the Medical Research Council (MRC) and James Cusack from Autistica on our Session 6 panel discussion. Kate began by introducing people to the MRC, a large broad-remit funder dedicated to supporting high-quality research from a range of different aspects of human health, including autism. She noted that, while the MRC is not directly involved in participatory research, which might be difficult to implement given that they fund across a wide scientific remit, they are nevertheless on a journey with regard to such research. James began his talk describing Autistica’s mission and how, over time, their research priorities have changed to try to reflect the autistic community’s priorities. He explained how autistic adults and parents are included in their science advisory group, in the grant reviewing process, and in overseeing final reports from their grants. He left us with some suggestions for Autistica can improve, including sandpit models, guidelines and training for researchers and studentships/apprenticeships specifically for autistic people. 

Kate and James’s talks led nicely into a group exercise on how we can build capacity for engagement/research in early-career researchers/the autistic community. You can read more about these discussions here and here [add links]. 

After lunch, we were all very excited to hear from Chris Frauenberger from the Vienna University of Technology and Wendy Keay-Bright from Cardiff Metropolitan University, both of whom spoke about their use of participatory design processes. Chris talked about how most technology designed for autistic children seeks to overcome their functional limitations and, as such, ignores their rich and complex lives. Instead, his design work, which engages intensively with a few children over a long space of time, seeks to enhance these children’s positive experiences, well-being and quality of life. He gave some wonderful examples of the intensive work that he has done designing with autistic children, rather than for them. Wendy talked about her personal and professional journey in the world of design research, noting that there was little space for work that was joyfully “pointless”. She also gave fabulous examples of her work that sought to be joyful (giving to the environment, not taking away), experimental (being able to be oneself), unpredictable (opening up, not dumbing down), agile (building bridges), speedy (quick release) and generative (space to grow). Chris and Wendy’s work opened up the discussion for involving autistic children and adults who are typically excluded from the research process. 

Our final session for the seminar challenges attendees to think beyond partnerships, instead championing autistic-led research and initiatives. Larry Arnold, autistic scholar and editor of the autistic-led journal, Autonomy, began by speaking about his rejection of more quantitative research, which he felt has led to the suppression of autistic voices through reducing them to numbers. Instead, he called for research that allowed individual voices of the participants to be heard. Larry talked about his own scholarly journey, from a lone researcher to a series of cooperations and collaborations, and challenged us to think about the purpose of autism research and what does it serve, if not to give back something to the community from which it was derived? Leneh Buckle, one of the founding members of Autscape, an autistic-led charity that runs a large annual residential event for autistic people, spoke about some of the challenges and opportunities of working with autistic (and neurotypical!) people. She highlighted that autistic people are capable of producing things that are truly autistic-led and that is possible for ways and means to be re-invented in autistic ways. Like many others in the seminar, Leneh emphasised the importance of autistic and neurotypical people learning to understand one another. Our final panel discussion speaker was Dinah Murray, an independent researcher and campaigner, who spoke about two of her initiatives. The first was the Standardised Participant Question Report (SPQR), a short series of questions for researchers to put to their participants after they had taken part in their research. The second was the Autistic Space Kit, a mobile app and communication aid for autistic people to use in moments of stress or crisis, supporting their independence and autonomy. Dinah emphasised the need for mutuality: “we can’t have autonomy without other people"”. 

In the final discussion section, Liz presented her speedy analysis of people’s responses to the post-card exercise that people completed earlier in the day, the results of which you can see here and opened it up for discussion about what we people thought should be the next steps. 

Overall, it was an incredibly thought-provoking two days, with many opportunities for people to have their say. There was also a real acknowledgement of common issues and of other people’s perspectives, wants and needs and a willingness to work towards change. There was also a consensus: that we need to work together to make sure that the research that we do really counts.

Liz Pellicano and Damian Milton

August 2016