December 3rd is International Day of Persons with Disabilities. In this Q&A, Hanna Bertilsdotter Rosqvist and David Jackson-Perry, editors of The Palgrave Handbook of Research Methods and Ethics in Neurodiversity Studies, highlight the importance of research in Neurodiversity Studies and the use of neurodivergent-affirmative methods.

What does your handbook, The Palgrave Handbook of Research Methods and Ethics in Neurodiversity Studies, aim to achieve?

Two things really. Firstly, Neurodiversity Studies (NDS) is becoming increasingly popular, but there is very little detailed reflection and guidance about methods and ethics in Neurodiversity Studies, and we really wanted to change that! Researchers might want to develop their neurodivergent-affirmative methods but just not know where to start, and here they will find lots of accessible and detailed examples ‘under one roof’, as well as some more theoretical—but still accessibly written—reflections concerning ethical considerations. Secondly, we really wanted to showcase neurodivergent talent, both established and emergent. Both editors and most contributors to this volume are neurodivergent, which is pretty unique in an academic handbook!

What is the impact of inclusivity when it comes to research methods and ethics? What are some of the injustices that surround knowledge production around neurodivergence?

The title of this volume separates methods from ethics, but this is really a bit of an artificial distinction. The editors and contributors in this collection share their passion for, and the mechanics of, their participatory and neurodivergent-affirmative work, and address ethics alongside methods. In fact, methods are at the heart of ethical research in NDS: methods are how we operationalize our ethical ambitions.

This involves acknowledging—and resisting and mitigating—possible power dynamics between researchers and participants. Neurodivergent-affirmative research methods require rethinking what we think we know, resisting traditional scientific assumptions of the possibility of complete objectivity, and acknowledging the complexity and potential of experience. In turn, this implies that researchers, whatever their neurotype, need to explicitly reflect on how their own characteristics and those of their collaborators and/or participants might differ, how this differing might impact the research process, and how to navigate it to mutual advantage. To challenge the notion of a non-situated, objective researcher, is therefore both an ethical and a methodological proposition. We want to shake things up a little!

Your question about inclusivity is a great example. Inclusivity is generally conceived as a move by, for example, non-disabled or neurotypical researchers to include disabled or neurodivergent folk in their research processes. In this book, we suggest, a little tongue-in-cheek, to reverse this, to rethink what we even mean by inclusion. Why not think about inclusion as disabled or neurodivergent researchers including non-disabled or neurotypical colleagues! We seek not just to question the role of neurodivergent folk in research processes, but also to explore the possibilities of evolving roles for all researchers regardless of neurotype. NDS is therefore inclusive: but reframes the question of what inclusion can mean!

How has the field of Neurodiversity Studies evolved over the years?

Neurodiversity Studies as an academic field is actually quite recent, and this is only the second volume dedicated to it since the publication of Neurodiversity Studies: A New Critical Paradigm (eds Bertilsdotter Rosqvist et al, 2020). NDS has been referred to in various ways. At its simplest, it can be seen as a cluster of research informed by neurodiversity approaches. This implies a difference approach to neurodivergence drawing on social models of disability, and an acknowledgment of the importance of, for example, participatory research and theorizing developed by neurodivergent scholars and lay communities. Two really successful examples of the latter are the Double Empathy Problem, first proposed by Dr Damian Milton, and Monotropism, first developed by Dr Dinah Murray.

However, of course NDS would not be possible without all the great work that has been done regarding neurodiversity approaches more widely, and we pay considerable homage to these throughout the volume, including our reference to Steven Kapp’s Autistic Community and the Neurodiversity Movement. Just as the notion of neurodiversity developed from community theorizing in the 1990s, so NDS has a great debt to community advocacy and other frameworks, such as Critical Autism Studies.

What challenges do you face while conducting and publishing research in an emerging field?

Many of the chapters in the book address this question. The barriers and challenges are both structural/traditional (academic hierarchies and traditions for example in research funding application, leadership and decision making in research, formal ethics application), material (including research funding, access to academic employments and research education) and personal (lack of knowledge of how to do participatory research/research involving communities, difficulties in advocating for both one´s own needs and research participants needs as well as neurodivergent-affirmative approaches in academic environments dominated by deficit/pathology approaches). But even if NDS is an emerging field, research informed by a neurodiversity approach is no longer new. This means there has been a gradual build up of a diverse range of practical ‘know-how’, research infrastructures, support systems, and publications, including new and not so new academic journals in the field increasingly centering research from a neurodiversity approach (e.g. Autism in Adulthood, Autism, Ought, and Neurodiversity). While contributors may represent forerunners in the field, they are also paving the way for emerging researchers currently at MA and PhD levels who will hopefully benefit from being “2nd generation” researchers working from a neurodiversity approach, where the forerunners or “1st generation” researchers and community members have done much of the foundational groundwork.

How did you bring together this group of contributors for the handbook?

Similar to Neurodiversity Studies: A New Critical Paradigm (which arose during the summer 2018 as a result of discussions in the only Facebook group at that time for autistic autism researchers (Autistic Autism Researchers), this book is the result of a broader neurodivergent researcher collaborative project “Autism and Social model”. The broader project was led by Bertilsdotter Rosqvist and initiated by Richard Woods in 2022 with a posting in the Facebook group Autistic Researchers Researching Autism (ARRA). In his posting Wood sought collaborators to “to do something to mark the 40th anniversary of the social model" (Mike Oliver´s book Social Work with Disabled People (1983)), but also of the 30th anniversary of the neurodiversity movement (Jim Sinclair´s presentation “Don´t mourn for us” at the 1993 International Conference on Autism in Toronto (Sinclair, 1999)). Several members of the group were interested in participating in the project and the call “to do something” also has been spread outside of the Facebook group. As the project idea started to unfold, Bertilsdotter Rosqvist took on the role as PI, and this handbook is one of multiple projects that grew from there. Early on Hanna Bertilsdotter Rosqvist invited her long-term collaborator and friend David Jackson-Perry to become her co-editor on handbook.

How do your personal and/or academic backgrounds inform your research?

We are both neurodivergent, and our backgrounds are in sociology, social work, queer theory, Critical Autism Studies, epistemic injustice, critical disability studies, and feminist studies, to name just a few! So, following in the footsteps of Critical Autism Studies and other critical movements, the question of interdisciplinarity was there for us from the word go!

How might this handbook support future research in the field of Neurodiversity Studies and the social sciences more broadly?

This handbook is very much intended as part of an ongoing discussion rather than a definitive “laying out” of the field. The large number of contributions, many of which lay out in detail processes used during research projects, showcase a wide range of methods that researchers can draw from, adapt, or even reject for their own projects! Beyond methodological considerations, we also hope that the highly reflexive positioning of authors as they carried out their research will be useful to any social scientists interested in thinking outside the box. The social sciences more broadly are in a period of profound evolution—take, for example, the increasing acceptance and proliferation of autoethnography as a valid methodological tool. The interest of this handbook is therefore not limited to those undertaking research concerned with neurodiversity, but anyone thinking around questions of epistemic injustice, methodological creativity, and reflexivity in their research practice.

Hanna Bertilsdotter Rosqvist is a sociologist and professor in social work at Södertörn University, Sweden.  

David Jackson-Perry is a sociologist and visiting scholar at Queen’s University, Belfast, UK. He is also a specialist in sexual health and HIV project manager at the University Hospital of Lausanne, Switzerland.

Image credits: Andi Lehner (David Jackson-Perry, left) and Kristina Sahlén (Hanna Bertilsdotter Rosqvist, right)