Navigating postgraduate research into disabled communities and the politics of autism research
Being a postgraduate is hard enough as is. We are told repeatedly of the mental health crises and long hours we are not just expected to have happen but we see those around us experiencing every day. Masters courses and beyond are there to ready us for the realities of conducting research, meeting tight deadlines and compiling large projects over increasingly shorter amounts of time. Stress and increased pressure are things that we can ‘accept’ when studying and researching but their impact becomes increasingly more difficult when we consider the intersections postgraduates and particularly psychology postgraduates are faced with.
Psychology is an area that (very) broadly looks at the human brain, behaviour and when things aren’t always what we expect. For those that are curious, it draws in people to learn more about what they might be struggling with in a format we are told is structured, objective and academically rigorous. Those struggling with mental health issues may have an increased interest in finding out more about clinical aspects of psychology, someone who has poor eyesight might be intrigued by eye tracking software and in my case, someone diagnosed as autistic may want to learn more about the experience of other autistics.
Traditionally, research into specific conditions, such as autism, has included those with the condition taking part in research through Patient and Public Involvement groups (PPI), and in some fields these people have conducted research themselves either covertly or overtly. For research into autism this approach has faced a couple of challenges and changes.
First is the movement towards participatory research methods (away from researcher defined priorities) which includes but is not limited to autistic people guiding the research questions, designing studies, conducting research and co-producing articles.
Second is the movement away from autistic people being considered unreliable narrators of their own experience based on previously held beliefs that autistic people all struggle to access their thoughts and feelings which might just be verbalised or expressed differently.
Third and almost most importantly are the changes that have been effected from conducting research through a ‘nothing about us without us’ viewpoint. By involving autistic people stigma is reduced, preferences such as language are developed and our research methods move from tokenisation to the possibility of participation and inclusion at all levels.
However, I wasn’t aware of these models when starting my master’s year. I had my own thoughts about what I would have liked to see in research and the papers I liked generally used methods I would have taken part in or confirmed anecdotes I had already heard from the autistic community. As an autistic person I wanted to get involved with autism research that I thought would be meaningful not just to myself but also for the community I’m fondly a part of. This is the same for many who are interested in research, they are motivated to change in systems that they feel aren’t working.
Priorities for including autistic voices in research are often centred around two things: payment of those involved and meaningful participation in guiding research questions and methods. So, while I, as an autistic person, could guide research methods as an autistic voice – and I did for my master’s research – I also needed to source experiences that weren’t my own for how to research my chosen topic.
This is where participatory methods came into my research and these methods are how the autistic community overwhelmingly wants research to be now and in the future. Participatory methods can be difficult for master’s students, PhD students and post-doctoral researchers to put into place. Unfortunately, if like me they are learnt of participatory methodology after project planning begins or after grants have been applied for this can impact on the resources you can devote to including autistic voices and expertise. It can be difficult to bring autistic voices into research once the ‘cogs’ of research have started turning but is still something that can be achieved.
Using the example of my research project into the autistic experience of therapy for anxiety I guided the initial approach based on my own experiences, widened this to young autistic people, autistic researchers, autistic parents and clinicians. Without the suggestions and feedback of autistic people in various parts of the autistic community I would not have developed an inclusive interview schedule, thought as much about the sensory environment or guided my approach as precisely to my young autistic audience. Finding a variety of voices to bounce ideas off and question my practice both in the best interest of my autistic peers but also in the best interest of rigorous research ultimately made my research far better than guessing at research practice or basing it on a research area that has no evidence.
There are several places you can reach out to the autistic community as a postgraduate researcher, not all methods are fool proof or garner opinions for the widest variety of the spectrum. Twitter has a vibrant #ActuallyAutistic community who can be reached for answers via #AskingAutistics, many autism researchers are on twitter and are happy to share callouts or recruitment tweets. Not all autistic people exist on twitter and while it can be a great resource not all voices are on twitter and often the most vocal are represented through social media platforms. To reach more autistic people, collaborators or co-researchers you may need to widen searches to local groups, local charities, parents/ carers as a proxy and build a network through autistic people themselves.
As a postgrad I found this new community and politics intimidating as with any group there are often unspoken rules that have developed as preferences for how people like to be spoken to, the language terms they prefer and how to approach participation activities. I quickly learnt that the best approach is to ask rather than assume, mistakes are made during the learning process and there are types of research that autistic people severely distrust with a rich history of where these beliefs developed.
What is the point I’m trying to get at?
- When planning research concerning a specific community you should always involve the people you are researching in the processes- from the very start!
- For disabled students, being an expert by personal experience can be very different from academic evidence bases. Navigating this transition can be uniquely difficult but provides understanding that no one else will have.
- The thinking around autism research is changing and needs to change at all levels of research, small changes in postgraduate research can lead to bigger changes.
 Objectivity in research can sometimes be a questionable endeavour as we apply our own inferences to statistics and the tests we run.
Sarah O’Brien is a recent Clinical Aspects of Psychology MSc graduate from the University of Reading, and currently works as a Participation and Policy Assistant for Ambitious about Autism.