This piece is part of the Autism and Culture series, in which researchers at the Faculty of Education carrying out studies relating to autism across the globe reflect on new challenges and exciting opportunities. This series was published in recognition of World Autism Awareness Week 2021, and you can view the rest of the series here: https://fersacambridge.com/?s=Autism+and+Culture
Doing research across contexts is a bit like being a secret agent: you must carefully negotiate different worldviews, blend in unfamiliar environments, adopt new habits, establish trust relationships with local informants, and submit reports to outsiders. But would James Bond perform well on a social research assignment? I doubt it. Secret agents are trained to gain new knowledge by hiding their true identity. As social researchers, on the other hand, we can gain extremely valuable knowledge by revealing our true identity (to others, but most importantly to ourselves). In this blog, I draw from my experience in autism research in the UK and in India to argue that reflexivity is our most valuable tool to engage in more inclusive and respectful conversations in global autism research.
Working with Autistica (UK’s national autism research charity) brought about a crucial realization: I am a non-autistic autism researcher. The field of autism research is largely occupied by non-autistic researchers like me, whose perceptions of ‘what matters’ have dominated the discourse. This creates an incommensurate drift between research outputs and the actual needs and priorities of autistic people, with harmful misconceptions being perpetuated and little impact being achieved. In the UK, Autistica challenges this status quo by promoting participatory and inclusive research practices. They aspire to place the voices of autistic people at the heart of the research process: from co-designing projects to using inclusive research methods and impactful dissemination strategies. With an overt awareness of my identity as a non-autistic autism researcher, I make conscious decisions to operationalise these inclusive values. For example, I shaped the focus of my PhD study to address a research priority identified by the UK autistic community (support services for communication disability); I choose my words carefully so as not to reproduce pervasive deficit-based language (such as ‘impaired’, ‘disordered’, ‘poor skills’); and I engage in events within the autistic community, which helps to keep me grounded in the values and aspirations of the people I am working with and for. These are small but necessary actions, for my identity as a non-autistic autism researcher comes with responsibilities.
Collaborating with Action for Autism (India’s national autism NGO) brought to light other facets of my researcher identity: I am also a white researcher from the University of Cambridge. I had begun to reflect on the white Western dominance in autism research prior to my time in New Delhi but being immersed in the field materialized this uncomfortable truth. The so-called ‘state-of-the-art’ research fell short of addressing critical challenges on the ground: the western way(s) of conceptualising autism conflicted with local understandings, diagnostic and therapeutic tools reproduced biases, and methodologies were ill-adapted to the available resources. Upon realising the complexities of my positionality in this context, I knew that I needed to better understand my own biases in order to act more responsibly. And so I spent a considerable amount of time observing and listening to local researchers and therapists. Unfortunately, the COVID-19 pandemic interrupted this process and I was forced to leave New Delhi with a new dilemma: should I pursue the project at a distance, or pause it? On one hand, I knew that introducing the voices of Indian therapists in the autism research debate would be invaluable in contributing to addressing existing inequalities. On the other hand, I was still largely unfamiliar with the field, uncomfortable about the power dynamics at play, and worried that I could misrepresent the views of my collaborators. After serious consideration, I came to the conclusion that the risk of reproducing racial oppression was too great under such circumstances, and decided to pause this project. To me, this was a difficult but necessary action, for my identity as a white researcher from the University of Cambridge comes with responsibilities.
So, this is the start of my journey becoming a more aware white non-autistic autism researcher from the University of Cambridge (…also female, junior researcher, Speech and Language Therapist, non-native English speaker, etc. – but these are stories for another time!). These experiences of autism research in different contexts have built my awareness of my identity as a complex, multi-faceted and active ingredient in the research process. Being connected with my identity allows me to act more responsibly upon my values, to be less afraid to confront my biases, and to be more grounded in the research landscape. This process is ongoing and integral to my scholarly work, as I continuously shape, and am shaped by, my research practices. Better still, reflexivity allows me to better appreciate the identities and practices of others: I am more tuned to their richness and complexities, and mindful of the ways in which they interact with mine. And this is why I am convinced that reflexivity is our most valuable tool to engage in informed, sustainable and accountable conversations in global autism research.
Now, your mission – should you choose to accept it – is to stay connected with your researcher identity to better understand your past worldviews, better appreciate your present experiences, and better inform your future impact. But be aware, reflexivity is a transformative process of deconstructing-reconstructing meaning and internalising-externalising values. It requires both patience and kindness, for your research identity and values will continually evolve through the very act of being challenged. This assignment will not self-destruct in 5 seconds, but self-construct in a lifetime.
Mélanie Gréaux is a trained Speech and Language Therapist and PhD researcher at the Faculty of Education. Her PhD study looks at Speech and Language Therapy provision for autistic children with linguistically and culturally diverse backgrounds in the UK.