Beyond tokenism: Autistic people in autism research

Damian E.M. Milton on participatory research with autistic people, plus links to our content on this topic.

In recent years there has been an exponential rise in the amount of autism research undertaken, yet much of the narrative has been at odds with voices from the autistic community following the ‘neurodiversity paradigm’ which could loosely be described as applying a social (or post-social) model of disability to autistic (and other ‘neurodivergent’) experiences. 

As an autistic social scientist, ever since moving into autism research I have championed the need for greater participation of autistic people throughout the research process; from design to interpretation and dissemination (Milton, 2017). Echoing the views of autistic and wider disability activists for ‘nothing about us, without us’, I and many others have sought to make a difference in this regard, often in the face of strong opposition. A similar sense of tokenism is often felt among autistic people regarding their representation by organisations set up ‘for’ autistic people who often have limited input from autistic people themselves. 

‘...right from the start, from the time someone came up with the word ‘autism’, the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.’ (Williams, 1996: 14).

Within social science there have long been debates about the usefulness of insider and outsider perspectives on any given issue, such as the concepts of positionality, situated knowledge, habitus and disposition.

Autistic people are marginalised within society, often with limited life chances. Divides and controversies over what autism is exactly, and therefore how best to support autistic people, largely stem from the difference between seeing autism as a medicalised set of deficits to be remediated, and describing a variety of ways of being in the world that need accommodation and understanding. These issues have a direct bearing on what outcome measures are used in autism research and how useful they are in practice.

In the production of knowledge within the field of autism, autistic people have traditionally been seen as subjects of research, rather than in the role of researcher. This is slowly, thankfully, beginning to change. Yet autistic researchers are still a distinct minority within the academy and a participatory ethos more generally can often be held back by financial and bureaucratic constraints. This means that most autism research would not be viewed as having more than tokenistic participation (on a scale such as that devised by Arnstein, 1969). In order to break the cycle, a more collaborative approach is needed in setting the research agenda as well as the design and development of support strategies and methodologies. 

Rather than a prescriptive ‘how to’ guide, participatory research should be conceived of as an ethos or ideal, and often one that is fraught with difficulties in actual practice. Participatory research can relate to a wide range of theoretical and methodological approaches, with the aim of ceding power from the researcher to the participants, with participants in control of the agenda, processes and interpreting analysis of information generated.

There are, however, many barriers to the inclusion of autistic people in research, not least the heterogeneity of autistic experiences and positionalities. The cognitive or linguistic demands of a method may impair the full involvement of autistic people with learning disabilities. Often proxies for autistic perspectives are taken from those close to them, yet this can sometimes be problematic. Of course, just because something is difficult, that does not mean it should not be attempted. Given what is at stake ethically and epistemologically, one could see it as essential to do more toward the participatory ideal.

As an example of this one-step-at-a-time ethos, I was involved in a project called ‘Transform Autism Education’, which involved teams from the UK, Italy and Greece sharing educational practice ideas through building a community of practice. Alongside others on the team, such as Rebecca Wood, I gradually increased autistic participation as the project developed, from holding events and workshops with autistic speakers and co-produced workshops, to helping recruit autistic consultants in Italy and Greece. 

I also worked on a pilot project at London South Bank University, which provided mentoring for autistic adults. This involved mentor training developed by autistic people, autistic and neurodivergent members of the project team and advisory groups, as well as some of the mentors who worked on the project. Everyone involved fed into the process as a whole and goals for the mentoring process were set by the mentees (Martin et al., 2017). Whilst such examples are increasing in number, many obstacles to participatory research with autistic people remain. As an example, few projects successfully involve autistic people with significant learning disabilities, with some notable exceptions including work from Susy Ridout, Anat Greenstein and Sally Brett.

A significant factor in participatory research with autistic people is what I have previously referred to as the ‘double empathy problem’ (Milton, 2017). At its most basic, this concept suggests that rather than framing autism as a social deficit within the autistic mind, breakdowns in interaction are more to do with a mismatch of salience (what is perceived as meaningful and important within a given context) and interactional expertise (or ‘know-how’). Problems in empathy being a ‘two-way street’ have been commented upon since the origins of autistic activism, and recently, research from a range of disciplines has furthered our understanding of such interactional issues. Similarly, work in the area of monotropism or an ‘interest model’ of autism is finally getting some needed attention (Murray, 2019), along with recent discussions on how these ideas intersect with neuroscientific concepts such as predictive coding. Working collaboratively, however difficult that may be, is the only way such work has been able to flourish. Such efforts also increase mutual interactional expertise.

The ‘Future Made Together’ report (Pellicano et al., 2013) examined the spread of autism research within the UK and beyond, and the priorities of various stakeholder groups. Needless to say, there was a disparity regarding the aims and objectives of research. The findings did not necessarily suggest a reduction in basic science, rather a need to increase funding into more participatory and social research with everyday impact. 

Following on from that report came the ESRC funded ‘Shaping Autism Research UK’ seminar series (Fletcher-Watson et al., 2018), bringing together autistic people with academics, family members and practitioners. Perhaps unsurprisingly the topic of participation was high on the agenda, with a planned seminar on this theme. Preceding these developments there were events and meetings on the subject run by autistic-led groups.  

I currently chair an open network called the Participatory Autism Research Collective or ‘PARC’ (www.PARCautism.co.uk). The PARC group was set up in 2015, initially at London South Bank University, but it has grown to a network with international interest. This network was set up so that those who wish to see more significant input from autistic people in autism research could share their work, to reduce the isolation of autistic people in academia, and raise the profile of participatory approaches (Milton et al. 2019). 

Traditional methods of consulting and working in partnership may not always be effective, and new avenues for connection may need to be sought, however when collaborative ventures are pursued, and when people on the autism spectrum feel included and empowered, the ability to live as one chooses greatly increases.’ (Milton, 2014).

Damian E.M. Milton
Lecturer in Intellectual and Developmental Disabilities
Tizard Centre, University of Kent

References

Arnstein, S.R. (1969). A ladder of citizen participation. Journal of the American Planning, Association, 35(4), 216–224.
Fletcher-Watson, S., Adams, J., Brook, K., et al. (2018). Making the future together: Shaping autism research through meaningful participation. Autism: International Journal of Research and Practice, 23(4), 943–953.
Martin, N., Milton, D., Sims, T., et al. (2017). Does mentoring offer effective support to autistic adults? A mixed-methods pilot study. Advances in Autism, 3(4), 229–239.
Milton, D. (2014, January). What is meant by participation and inclusion, and why it can be difficult to achieve. NAS Ask autism conference: Participation and inclusion from the inside-out: Autism from an autistic perspective, London. 
Milton, D. (2017). A Mismatch of Salience: Explorations in Autism from Theory to Practice. Hove: Pavilion.
Milton, D., Ridout, S., Kourti, M., et al.(2019). A critical reflection on the development of the Participatory Autism Research Collective (PARC).Tizard Learning Disability Review, 24(2), 82–89.
Murray, F. (2019). Me and Monotropism: A unified theory of autism. The Psychologist, 32, 44–49.
Pellicano, L., Dinsmore, A. & Charman, T. (2013). A Future Made Together: Shaping Autism Research in the UK. London: Institute of Education. 
The Participatory Autism Research Collective. (2019). www.PARCautism.co.uk
Transform Autism Education. (2019). https://www.transformautismeducation.org/
Williams, D. (1996). Autism: An Inside-Out Approach. London: Jessica Kingsley.

Here are our relevant pieces from The Psychologist and the Research Digest…

Time to rethink autism and communication
Rebecca Wood argues for a greater appreciation of different styles

Me and monotropism
Fergus Murray – science teacher, writer and 'autist' – on single attention and associated cognition in autism; a theory with a family connection…

Autism in women
Eloise Stark looks under the radar

Art, autism and identities
Sally Marlow on 'Changing the Face of Autism Research Together', an arts collaboration 

‘Touched by your light’
Hannah Akalu’s poem about her experience of being a first-time parent to a child who is on the autism spectrum

What should we be ‘aware’ of on World Autism Awareness Day?
Views from leading researcher Professor Sir Michael Rutter, and parent / disability equality consultant Graham Findlay

Working for an autism charity
Aleesha Begum describes her work with individuals with autism spectrum disorders

Putting autism centre stage
Ella Rhodes reports on a community project and art/science collaboration 

Autism: Myth and reality
Our October 2014 special issue

See articles relating to autism from the Research Digest

Outstanding theatre in Edinburgh

Society President David Murphy is a regular at the Edinburgh Fringe Festival. This year he’s already caught more than 20 shows; here are his brief thoughts on three that have stood out for him.

‘Trauma is playing out in the theatre of the body’

Kal Kseib meets Dr Peter Levine, the founder of the ‘Somatic Experiencing’ approach to trauma.

Breaking down barriers

Pooky Knightsmith on school-based approaches to mental health.

Difficult conversations in the SpeakEasy

Annie Brookman-Byrne and Jon Sutton report from psychology-themed events at Latitude Festival in Henham Park, Suffolk.


Queer approaches to depathologisation

In this 'long read' chapter from her new book 'Queer Ink: A Blotted History Towards Liberation', Katherine Hubbard considers the contributions of Evelyn Hooker and June Hopkins.

Moving towards a modern Mental Health Act

Sophie Carruthers talks to some key stakeholders in the Independent Review. Do we even need an Act, and if so how do we ensure the best experience for people – particularly those from ethnic minority groups?

August 2019

This month's issue, archive, digital editions and more: Your Psychologist, your way...