Autistic participation: a question of ethics

R.WoodDr Rebecca Wood is a former teacher and autism education practitioner who has recently completed her PhD on the inclusion of autistic children in the curriculum and tests in mainstream primary schools. She is currently an honorary Research Fellow at the University of Birmingham, and was the project manager on the Transform Autism Education programme, a tri-national scheme funded by the European Commission. Rebecca gives presentations at national and international conferences, as well as seminars and workshops on a visiting lecturer basis. She has had articles published in The Conversation, The Times Education Supplement and Network Autism. Her co-authored article ‘Reflections on the value of autistic participation in a tri-national teacher-training project through discourses of acceptance, othering and power’ is due to be published by the British Journal of Special Education. Rebecca has been commissioned by Jessica Kingsley to write a book based on her PhD, for which there are ten child and adult autistic contributors. This is due to be published next year.

ACERblog1We hear a lot about ‘autistic participation’ these days, and this is undoubtedly a good thing. And when I set off, a few years ago, on the long, winding and sometimes rocky road of my PhD on the educational inclusion of autistic children, I was determined that autistic people were going to be involved in some way.

There are certainly many important reasons for involving autistic people in autism research. There are legal prescriptions and precedents in the form of disability legislation, and the simple fact that researchers need to ensure they are identifying the right priorities for autistic people and their families. And in my own case, it was also a methodological issue: I felt that it was only by involving a range of perspectives – school staff, autistic children, their parents and autistic adults – that I could reach some sort of understanding about the immense difficulties experienced by many autistic children in schools. And that’s assuming they haven’t been excluded, which a worrying number have.

ACER blog2The university ethical review processes, when you want to involve disabled children in particular, are pretty complex. It’s important, of course, that before researchers are released – all keen and brandishing questionnaires and interview schedules – into ‘the field’, they have thought through, and planned for, all of the various ethical issues which might crop up. Even so, it can be difficult to accept filling out long documents detailing everything about recruitment, consent, data storage and numerous other issues, when you see TV programme-makers invading schools, with little by way of evident protections, or education staff and charities cheerfully posting photos of children on social media, for example.

In my view, and although I grumbled a fair bit about having to do it at the time, the ‘gold standard’ of university ethical review is absolutely essential in research. It protects the researcher as well as other people involved, and serves as a constant reminder to always be careful about the role and feelings of others. It helps you to realise that ethics underpins every stage of the research process, and in the increasing drive to further ‘autistic participation’ in autism research, it’s all the more important to plan all of this ethically.

As far as methods are concerned – the ways in which you might gather data in your study – diversity and flexibility are key. Not only do you have to make sure that this is all planned for in your ethics review, but that any further changes, which might be necessary once you meet your participants, are reviewed by the ethics committee. So yes, it means getting the forms out again, filling them in, and drumming your fingers while you wait for them to be checked. But it has to be done. You won’t get very far with autistic participation if you just have a single, unbending way of involving autistic people. And that in itself has all sorts of implications for your research as well, such as the nature of your study and how more broadly applicable your findings might be.

In fact, for me, this is one of the biggest issues concerning autism research today in the context of increasing the participation of autistic people. What one autistic person expresses may well be different from the views of another, and even contradict them entirely. There’s also a huge problem with the lack of visibility of autistic people who are in care homes, for example, effectively hidden from view and, frankly, a million miles away from participating actively in autism research. This particularly applies to autistic people who might have limited communication skills, or who don’t use speech to express themselves.

There’s also a huge problem with the lack of visibility of autistic people who are in care homes, effectively hidden from view and, frankly, a million miles away from participating actively in autism research.

It’s important too to consider that autistic participation doesn’t just mean having autistic people in your study. It’s about reading accounts written by autistic people, and learning from autistic-led events and research. And, depending on the kind of research you are carrying out and what you want to achieve from it, it’s also about considering the most appropriate participatory models.  What it’s not is simply co-opting a few autistic people for your own immediate purposes and then skipping away when you no longer need them. If you have promised feedback, for example, you must give it, and in an accessible form.

summer 4As far as the ten children in my own study were concerned, there were a lot of hurdles involved before getting to the point of actually recruiting them as participants. You have to negotiate your way through a series of gatekeepers before you can include them, and must continue this mediation throughout the data collection process. This not only whittled down my sample size, but meant that participation was as much about those who made it through the various obstacles as anything else. Again, this places limitations on the ways in which you can interpret your findings.

But despite these issues, it is absolutely worth the effort to involve autistic children and adults in autism research, which of course, I am still learning about myself. When I was analysing my data, time and again, the views of school staff and parents would be completely reframed by those of the autistic adults and children. It meant that I ended up with a study which I feel was deeper and more evolved than those centred on ‘strategies for inclusion’ or ‘interventions’. I realised, for example, that educational inclusion is much more about understanding and acceptance of the learning styles of autistic children, rather than applying endless techniques or bolting on strategies. And for me, having a diversity of views, rather than a uniform, ‘autistic perspective’, was a factor which enriched my PhD, not detracted from it.

Autistic participation is also about reading accounts written by autistic people, and learning from autistic-led events and research.

Also, the time I spent with the ten autistic children, which was much longer than for the other participant groups, was really quite special. As you might expect, they were all very different to each other, but I thoroughly enjoyed their company, as they were generous with their time, tolerant about being video-recorded, and patient when I misunderstood them. Of course, I had to think carefully about my rapport with them, trying to ensure they were relaxed, but at the same time not leaving them feeling upset when I had to disappear out of their lives for good. In fact, this final point was really seized upon by the research ethics committee. What was I going to do to ensure the children would not be impacted negatively by my departure? they asked.

In the event, I hope I managed to strike the right balance by trying to enable a clear but positive farewell, and leaving the children with a sense that they had done a good thing in helping me. For example, on my last day in school, I gave each of them a book related to their interests. But in fact, because I then had to transcribe the video recordings, meaning that I sometimes played the same sections with the children repeatedly to capture them accurately, they remained very present with me long after my data collection had finished. I subsequently wrote up my findings, and so again, I had to delve into the words, actions and worlds of the autistic children in my study. And because of this, I continued to remain quite attached to them, and no doubt missed them a lot more than ever they missed me, if they missed me at all. Which, of course, is exactly as it should be.

With thanks to my PhD supervisors: Dr Karen Guldberg, Professor Gary Thomas and Dr Kerstin Wittemeyer.

A recording of the event ‘Learning from Autistic Perspectives’ (2017) hosted by ACER, and featuring Sarah Hendrickx, Dr Wenn Lawson and Dr Damian Milton can be found here. See also #autisticperspectives on Twitter.

Links to the ‘Autism and Ethics’ conference (2014), an autistic-led event run by Autism Rights Group Highland (ARGH), and in which Rebecca participated, are here.

Rebecca was a panel-member at ‘Participatory Autism Research’ (2018) run by Dr Laura Crane from the Centre for Research in Autism and Education (CRAE) and hosted by King’s College, London. See #Aut2Engage on Twitter.

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