Doing it differently: emancipatory autism studies within a neurodiverse academic space

Abstract

In the current research climate, in which many autistic and autism communities are increasingly calling for a move towards collaborative forms of research, we consider how a loosely formed epistemological community may serve to challenge 'business as usual' in the academy. Mindful of the need to move beyond theory, we use this experience to concretely consider how knowledge about autism and neurotypicality can be meaningfully (co)-produced, and made available both to the research community and also to autistic and autism communities. Here, we use our own coproduction of this article to explore how autistic experience may trouble normative meanings of academic knowledge production. We also consider the limits and possibilities of a neurodiverse research collaboration to reflect on ways in which a loose epistemological space may serve to contribute to knowledge about both autism and neurotypicality, adding to debate around collaborative research. Point of interest  It is important to include the voices of autistic people (as both researchers and participants) at all stages of research: this leads to higher quality research. Even though this is often mentioned in articles and studies, it is still unusual to see it happening.  Academic systems (such as the writing of articles, the training of researchers etc.) can be a barrier to the inclusion of autistic voices. We believe encouraging autistic and non-autistic people to work together (as has been done in this article) is a positive step to inclusion more generally.  We explore the advantages (and the difficulties) of collaborative work.  We think of this type of collaborative work as a project that can produce new perspectives and contribute to a move towards new ways of thinking about autism that do not rely on existing 'deficit-based' narratives.  We use the process of writing this article as a 'neurodiverse collective' as a starting point to discuss the benefits and difficulties of emancipatory and participative research more generally.  We reflect on how our theoretical discussion can be applied concretely at various stages of the research process.

Coproduction with Autistic Adults: Reflections from the Authentistic Research Collective

“…To date, there is little coproduced research with autistic people. Calls for emancipatory studies-studies seeking knowledge production beneficial to disadvantaged groupshave been coproduced with autistic individuals, 21 investigating both advantages and disadvantages of such collaboration. One project coproduced a series of seminars between autistic and nonautistic people, and explored the development of a collaborative framework for autism research.…”

Transformative eating disorder research: qualitative research considerations

“…I have begun to question the role of the dominant eating disorder research in stigmatizing my state of being. Informed by principles of community based participatory research [ 9 ], action research [ 10 ], and post-colonial theory [ 8 ], could qualitative eating disorder research occurring with, rather than on, persons living with eating disorders, lead to transformative outcomes?…”

“… 1 I use the term disabled and autistic in solidarity with my disabled friends and allies who prefer identity-first language, and in line with field of Critical Autism Studies [ 6 – 8 ]. …”

From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research

“…Participatory research is a methodology of which a central principle is the disrupting of the 'traditional power imbalance between researcher and participant' (Fletcher-Watson et al, 2019: 2). Closely aligned with the adopted call to arms of the critical disability studies movement of 'nothing about us without us' (see Charlton, 1998;Milton and Bracher, 2013), its often emancipatory aims (Bertilsdotter Rosqvist et al, 2019) are to co-produce research that is mutually beneficial for both researcher and participants.…”

“…Those who overcome these challenges, for example, the viva voce (Chown et al, 2016), and who obtain doctoral degrees, still rarely go on to obtain lecturing or research contracts (Barnham and Martin, 2017;Martin, 2017). The institution of the academy is, by its nature, constructed around (cognitive) norms (Bertilsdotter Rosqvist et al, 2019) that represent everything that the autist stands outside of, having been defined in opposition to them. Indeed, my own PhD journey has been hampered by unpredictable accessibility issues and lack of institutional understanding about autistic needs, and ways of being and working.…”