Theorising Autism Project - Engaging Autistic People in the Research Process

Volume 1. No. 2

Theorising Autism Project - Engaging Autistic People in the Research Process

 

July 30, 2014

By Anat Greenstein

 

Abstract:

Review of a seminar day at the Institute of Education


 

Theorising Autism Project - Engaging Autistic People in the Research Process

By Anat Greenstein

The Theorising Autism Project (TAP) is a unique project that runs one-day seminars in universities, bringing autistic presenters and academics together to discuss how autism, and, more crucially, autistic people, are theorised and represented in research. The second event of TAP took place on the 21st of March, 2014. This was a one-day seminar under the title Engaging Autistic People in the Research Process. The day was hosted by CRAE (Centre for Research in Autism and Education) in relation to their report A Future Made Together Shaping autism research in the UK .

The day started with a presentation from Liz Pellicano of CRAE, who presented some of the findings that arose from that project. These revealed the great dissatisfaction by what she called the autism community with the research produced in the UK. Autistic adults, family members and practitioners stressed the need for research that explores areas that affect the day-to-day lives of autistic people and their families, such as public services, life skills and opportunities, and, crucially, research that addresses the place of autistic people in society. Yet, the majority of research funding goes to projects exploring biological and genetic aspects of autism, with very little spent on research of societal and life-long issues (Pellicano et. al, 2013). Thus, at the same time of Government attacks on disabled peoples life chances, through such measures as the closure of the Independent Living Fund, the cut to Disabled Students Allowance, as well as more general welfare reforms and cuts, millions of pounds are spent on research that is divorced from the interests and concerns of autistic people and their families, and which very often promotes the idea that autism should be eradicated. Against this bleak picture, the TAP seminar day was a much needed and inspiring alternative.

Following Pellicanos illuminating report, Dinah Murray and Lyte, two neurodivergent activists, gave powerful presentations that spoke back to the ways autism is being theorised, researched and represented in academia and in mainstream culture. Murrays presentation, Theorising Human, drew on philosophy and art to ask what is distinctly human, and explore how autistic existence is not a limited or deficient form of human existence, as it is often represented in academic research, but indeed has a valued role to play in the human spectrum. She looked at how autistic obsessions, the detailed fascination with specific subject areas many autistic people experience, and which are often described by researchers and practitioners as pathological, are indeed expression of the uniquely human characteristic of multiplication - the creation of much from little, the mass production and mass destruction that are such an essential part of our societies. I must admit that I struggled at times to follow the verbal, logical argument, but the pictures of autistic art that so beautifully conveyed the wealth of nuances and complexities involved in what might appear as repetition, were mind-blowing. And indeed, this form of non-linear, non-rational, divergent experience was what, I believe, Murray was calling us to value. In a presentation titled Under the Gaze: fishbowling, commodification and lenses, Lyte utilised the discourse of the Gaze in art, poetry and painting, to address the power relations involved in research production. The presentation rejected the scientific gaze that is often used to represent autism as pathology, and used Lytes own point of view to look back and talk back at neurotypical society. In a society so fraught with injustice, intolerance and violence, we do not need to think about how to fit more people into current social norms, but rather we need to challenge the concept of norms all together, since, as Lyte stressed when reading this review, the healthiness of current neurotypical society itself is much to be questioned.

Such theorisations by autistic activists and by autistic academics have been proliferating over the last decade(s), with this journal being one notable example. Yet, they often happen outside of academia or at its margins. This seminar day put autistic speakers at the centre of the stage, discussing their theoretical and research agendas inside a major London university, with nonautistic researchers in the role of audience. Ironically, the conference was located at The Space a research lab with CCTV cameras, and one-sided mirrors, hiding spectators galleries behind them. Moreover, the doors of The Space are operated by electronic swipe-card, so workshop participants had to ask academic gatekeepers (literally!) to let them in or out. This was a vivid example of the issues raised at the conference. The very physical space of academia embodies the fishbowling research ideology that Lyte was talking about, with expansive and sophisticated labs that place the objects of the gaze in a tightly contained environment, exposed to the overarching, panoptic gaze of the researcher (Foucault, 1979). This structure prevents dialogue between research participants and the researcher, and constructs scientific knowledge as objective and neutral, and dependent on highly specialised training and equipment. These issues were raised in the concluding workshop of the day as some of the barriers to shaping autism research together. I will return to these points later.

The next part of the day was dedicated to more participatory workshops that allowed for dialogue between autistic and non-autistic, academic and non-academic, participants. It is worth stressing here that the titles autistic and academic do not refer to neatly defined and mutually exclusive groups. Some participants were autistic academics, some were non-autistic academics, some were non-academic and non-autistic, etc. Moreover, challenging the boundaries between academic theorising and activist theorising was a major achievement of the day. This challenge of the boundaries was double-edged first, the demand that autistic peoples needs, interests and understanding will be at the centre of autism research, and second, the use of sociological and philosophical theory by autistic people to turn personal troubles into public issues (Mills, 1959) and create social critique from an autistic perspective.

This last point was at the heart of Damian Miltons workshop Using our Sociological Imaginations to Theorise Autism. Milton explored briefly the main arguments of four sociological theories (Functionalism, Marxism, Interpretive Sociology and Post-modernism) and divided the audience into four groups, providing each with information sheets about one theory and some snippets from his own life. We were asked to construct a Damian according to the sociological perspective given to us. This workshop was highly loaded with information, and it was impossible to take everything in. Nevertheless, the group discussions and materials provided allowed participants to start grappling with the ways social theories are used to construct different representations of lived reality. Susy Ridout, in her workshop Engaging Methods: Actively Constructing Alternatives, demonstrated how collage work, using cut-outs from papers and magazines, can facilitate discussions that draw on visual understandings and enable different forms of conversation. In the group work participants created collages of what they thought of autism research, which they later shared with the larger group. The use of the collage technique fostered a non-threatening environment in which to discuss issues of research production in ways that did not immediately accord power to the academics who are versed in methodological theories. Put together, the two workshops posed a challenge to the traditional methods of academic discussion and research production. They fostered horizontal dialogue as opposed to the hierarchical relations between 'observer' and 'observed' that are embodied in the laboratory model. Further, autistic participants were not seen only as experts by experience who are invited as individuals to give heartfelt testimonials about their lives (what Jim Sinclair calls 'self-narrating zoo exhibits'), or as service users who are asked to provide their experiences to researchers, who then interpret them in their own way. Rather, the workshops were a process of co-constructing knowledge, with autistic people and academics theorising together, transforming personal experiences into social critique, particularly with regards to the disabling nature of much academic research production.

The concluding workshop of the day was aimed at planning the next steps how to push forward more autism research that is done in true partnership with autistic people. One of the main issues such research should focus on according to research participation was quality of life and how to get this for autistic people. In particular, there needs to be a focus on autistic led, critical investigations of what counts as quality of life and who gets to define it. Developing such research would require valuing (and developing) autistic expertise and according them a meaningful place within research teams. This seminar day certainly provided examples of the valued role of such partnerships. With regards to resources such as time and money, the workshop fostered opportunities for networking which participants were hoping could lead to the development of research funding bids. Personally, I have found the day highly inspiring and am keen to foster more research collaborations between autistic researchers and activists and the autism research taking place at the University of Manchester.

References

Foucault, M. (1977). Discipline and Punish: Birth of the Prison. London: Penguin Books.

Mills, C.W. (1959). The Sociological Imagination. Oxford: Oxford University Press.

Pellicano, E., Dinsmore, A., & Charman, T. (2013). A future made together: Shaping autism research in the UK. London: Institute of Education.

Sinclair, Jim <golem@ukanvm.bitnet> Re: Autobiographies <autism%94012300345553@sjuvm.stjohns.edu> in Usenet newsgroup bit.listserv.autism, Sat, 22 Jan 1994 21:49:09 CST.

 

 

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