Research Assistant, Sophie Hobson, reflects on the particularities and similarities of creating participatory research experiences that are accessible for people with autism.
As a Researcher at The Audience Agency, I love hearing about the research of others both inside and outside of the arts sector. I recently attended a seminar at Manchester Museum entitled ‘Participatory Autism Research – Opportunities and challenges’, as part of Autism Awareness Week. The seminar was presented by Dr Laura Crane, Associate Professor and Deputy Director of Centre for Research in Autism and Education (CRAE), University College London.
Dr Crane discussed a project commissioned by Ambitious About Autism, which she co-created with a group of young autistic people. The group approached her with their ideas for research into the experience of mental health amongst autistic people, and she helped them to narrow these down to key interview questions and trained them in analysing the findings. However, this was not a one-way exchange – the young people brought their own extensive experience and expertise too.
Participatory experience is not simply a method or set of methodologies, it is a mindset and an attitude about people. It is the belief that all people have something to offer to the design process and that they can be both articulate and creative when given appropriate tools with which to express themselves.
Whilst listening to the process they went through, what struck me was how the best practice for research with autistic people is not overly different to what should be applied to all research, regardless of its focus. Although many may appear obvious, remembering these fundamental details can help make research more accessible, inclusive and effective for everyone.
Being open and honest about your research – what you are doing and why you are doing it – is crucial for you, the participants involved and the people who will eventually read or refer to your work. It’s important that participants know what the research consists of and why it is being done, which helps to minimise any stress or confusion and allows them to make an informed decision as to whether they want to take part or not.
Listening to those around you can provide a better idea of what is needed. Conducting a literature review to ascertain what’s already been done and potentially discover any gaps in existing research helps to create more useful, relevant research.
In this case, Dr Crane highlighted that whilst there is plenty of existing autism research, the majority of it focusses on the biological aspects of autism – the brain and cognition – rather than the actual experiences of those with autism. There is no denying that this is of course highly valuable, but feedback from people with autism indicated a need for research about their everyday lives too.
Providing participants with clear instructions as to where the research is taking place - including maps, photos of the building/room, descriptions of transport links and details of timings - can help to avoid any stress or anxiety in the lead up to the event. Ensuring there is an optional quiet area available throughout the process can also be particularly helpful for those with autism.
In the research discussed by Dr Crane, the co-producers could advise on how to make the research invitations accessible to people with autism, based on their own experiences and knowledge.
This particular piece of research allowed the participants to be interviewed how they felt most comfortable - via Skype, text message, phone call or face to face. If the nature of the research allows it, enabling people to take part from a setting they feel at ease in by utilising multiple methods and technologies can help to gather insightful and honest responses.
The process itself shouldn’t be the only part where accessibility is considered. Once the research is done, think about creative ways to present or share the research in order to make it accessible and digestible for different people. There is often a tendency for research results to be confined to lengthy reports, but short videos and key findings accompanied by imagery or illustrationscan help to widen its reach.
It could be valuable for the participants themselves to hear what the outcomes of the research were and what any future plans for it may be. In this case, a toolkit was released for autistic people to monitor how they are feeling and help them explain this to others who may not understand their autism. The young people involved in the research are also available to provide training for education and healthcare professionals on how to use the toolkit which, like the research itself, was carefully designed and developed by them.
Written by Sophie Hobson, Research Assistant.
Featured in the May edition of The Learning Diaries. Aimed at those working in learning, engagement or participation in the cultural sector, this newsletter will share updates from our team on sector events, ideas from some of our projects and links to new research. To receive The Learning Diaries, visit the sign up page.