Being, Knowing, and Doing: Importing Theoretical Toolboxes for Autism Studies

The aim of this article was to think with and elaborate on theories developed outside of autism research and the autistic community, and through this support the production of new autistic-led theories: theories and concepts based on autistic people's own embodied experiences and the social worlds we inhabit. The article consists of three different sections all of part of the overall umbrella, Being, knowing, and doing: Importing theoretical toolboxes for autism studies. In each section, we import useful concepts from elsewhere and tailor them to autism studies. Throughout, we mingle our own autoethnographic accounts and shared discourse in relation to research accounts and theories. Illustrating being, we explore and discuss the possibilities of critical realism in autism studies. Illustrating knowing, we explore and discuss the possibilities of standpoint theory in autism studies. Finally, illustrating doing, we explore and discuss the possibilities of neurocosmopolitics including epistemic (in)justice in autism studies. Our proposal here is for an epistemic shift toward neurodiverse collaboration. We are inviting nonautistic people to work with, not on, us, aiming at to make autism research more ethical, breaking down bureaucratic structures, and questioning poor theory and shoddy methodology. Acknowledging intersecting axes of oppression in which an individual seeks to renegotiate and reimagine what it means to belong also means to understand what needs changing in society, as it is and how we might do things differently. Community brief Why is this topic importantPeople are starting to realize that good autism research should include autistic people (as researchers, participants, co-designers, for example), which means working in neurodiverse teams (teams that include autistic and non-autistic people). So far, a lot of ideas that researchers have had about autistic people have said that they (we) are impaired, which is hurtful and can make it hard to work together. If we are going to create better research, and better spaces to do research in, we need to find new ideas and ways to work. It is important that these new ideas are based on how autistic people see themselves and the world around them (us). What is the purpose of this article?In this article, we (a group of neurodivergent researchers) look at how we can apply ideas about how knowledge is made, how we use knowledge, and how knowledge impacts people, to creating better autism research. We use ideas from philosophy and think about how they can help us to share our experiences with each other. What do the authors suggest?We start by exploring how a theory called 'critical realism' can be used to understand differing autistic experiences, by taking into account how our identities and experiences are shaped by different social environments and affect we think about the world. Next we apply standpoint theory, which looks at the importance of acknowledging the impact of a researchers own identity in research. Finally, we explore 'neurocosmopolitanism', which hopes for a future where our differences can be celebrated and accepted. We also think about 'epistemic injustice', where research that is done 'on' instead of 'with' leads to inaccurate or harmful knowledge about us. We argue that by applying ideas such as these to autism studies, we can create spaces where fair and just autism research is created. We argue that these ideas will help both autistic and non-autistic researchers to understand each other better, because they are based on what it is like to be autistic, and not what being autistic looks like to non-autistic people. What do the authors think should happen in the future?The authors think that more researchers should think about what they say about autistic people. Autistic people should be recognized as the people with the most knowledge about what it is like to be autistic. We think that this will create a kinder way of working for both autistic and non-autistic people and research will be more useful and ethical. How will this study help autistic people now and in future?This research will help autistic people in two ways. First, it will make sure that autistic people's ideas and experiences will be taken more seriously by non-autistic colleagues. Second, it will lead to better autism research, benefitting autistic people who are not just researchers. This is because the ideas will be more closely related to the experiences of autistic people, instead of outside interpretations of what it is like to be autistic.