Empowering Autistic people in research
We’re joined on the blog by Guest Contributors, Katie Munday and Naomi Jacobs, sharing their experiences as Autistic researchers and their passion for research conducted with Autistic people, not just about Autistic people.
Who tells our stories?
Autism research has traditionally been shaped by non-Autistic perspectives. Research about us has often perpetuated harmful narratives that frame autistic people as in need of fixing. Autistic people’s own knowledge about ourselves has been overlooked, and we have struggled to tell our own stories. This epistemic injustice (Fricker, 2007) impacts the ways Autistic people are thought about in society – by educational and medical professionals, policymakers, and others in power.
However, we are beginning to see more research which includes Autistic people, our knowledge and stories, and aims to create a more equitable understanding of Autistic lives by focusing on our thriving rather than deficits.
We are two Autistic researchers who believe there is a better way to do research. We share this view with many others who want to do research with us, not about us. Only by involving us meaningfully in research can researchers understand the barriers we face, and influence those in power to address these barriers.
Autism research and power
Autism research is big business, worth £4 million a year in the UK. Most of this money is spent on studying causes of Autism – the brain, biology and genetics – with only 1% of research looking at social issues, such as our access to education or employment (Pellicano et al., 2014).
Autism research grounded in a medical model of disability is influenced by competing political interests. Industries and policymakers may have an interest in research that represents us as having needs that cannot be met, helping to justify spending decisions that limit care and education. Even research that claims to focus on our wellbeing can be questionable. The Spectrum 10K Project aimed to collect DNA and qualitative data from 10,000 Autistic people in the UK. Many Autistic people argued that there were ethical issues with this research, with a lack of transparency about the intentions and potential applications of this genetic data. The project was cancelled through the combined efforts of the Boycott Spectrum 10K campaign group and the wider Autistic community.
The political motivation to find a cause for Autism is not going away. In the US this year, Health and Human Services Secretary Robert F. Kennedy Jr. announced a programme of research on what he called “the Autism epidemic”. Autism is not an illness. Many of the ‘causes’ this research is investigating – like vaccines – have already been debunked. As government-funded research, the programme may reinforce negative stereotypes that complicate the lives of Autistic and other Neurodivergent individuals.
Whilst projects like this have the power to shape narratives about Autistic people, many Autistic researchers are scrutinised for our ‘bias’ in Autism research. Autistic researchers have reflected on the challenges we encounter in our work (Botha, 2021). We are discouraged from writing our cultural histories, and from righting the wrongs of research which has harmed us. Our narratives are only deemed relevant when they highlight our suffering, leaving valuable insights overlooked on Autistic joy. It can feel impossible to talk about how Autistic people can live good lives and contribute to society when research is focused on everything that is ‘wrong’ with us.
Autistic people’s priorities for research about Autism
Autistic people would like to see Autism research priorities flipped. More studies where researchers work with us to improve our lives, looking at issues like wellbeing, timely diagnosis and support, and changing attitudes towards Autistic people (Cageet al., 2024). Such research is often underpinned by the neurodiversity paradigm – the idea that Neurodivergent people are different, not deficient. That perspective moves researchers away from the idea of changing us,to working towards a more equitable society, where everyone can thrive.
Transforming research, from the beginning
Autistic researchers and activists have challenged the ableist and dehumanising beliefs that have historically lurked beneath so much Autism research. We are seeing more co-produced research, which challenges power imbalances between researchers and Autistic people. Some of these projects involve Autistic and other Neurodivergent people at every stage of research, from planning to co-writing papers (Williams et al., 2024; Kakoulidou et al., 2024). The AASPIRE toolkit shares good practice for participatory research, and the Participatory Autism Research Collective has been promoting Autistic people’s involvement in research for over a decade.
As Autistic researchers who work with Autistic people, we want to give people a voice in our research from the beginning.
“I have recruited a group of trans and gender diverse Autistic co-researchers to support the direction, theming and dissemination of my ESRC-funded PhD project. Together, we explore health and social care inequity experienced by trans and gender diverse Autistic adults in the UK. As a group, we are particularly interested in the intersections of oppression that affect racialised women and gender minorities (Crenshaw, 1989). The insights and experiences of these co-researchers, along with their understanding of the community, are crucial to this project, making it important for me to recognise their work through compensation and optional co-authorship. Feel free to keep up to date on our work together on my PhD Journal.
In a world where powerful research agendas control the conversation about Autism, we need more studies that share power with Autistic people – research that tells a different story about the value of our lives.”
“I am in the planning phase of research on Autistic people’s thriving. As an academic researcher, I have power when working with participants. So before I apply for funding, I’m asking Autistic people if they think the research I’m proposing is worthwhile. We began with planning workshops to discuss ideas; some people are now contributing to funding applications. These consultants are keen to see Autistic co-researchers fully involved in future research, from writing journal articles to sharing findings in accessible, engaging ways. Thanks to a small budget from my university, I can pay people for their time. Funding is competitive, but I believe that any research that goes ahead must be meaningfully shaped by Autistic people.”
References
Botha, M. (2021) ‘Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production’. Frontiers in Psychology, 12. Available at: https://doi.org/10.3389/fpsyg.2021.727542.
Cage, E. et al. (2024) ‘What are the Autism Research Priorities of Autistic Adults in Scotland?’ Autism: The International Journal of Research and Practice, 28(9), 2179–2190. Available at: https://doi.org/10.1177/13623613231222656.
Crenshaw, K. (1991) ‘Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women of Color’. Stanford Law Review, 43(6), 1241–1299. Available at: https://doi.org/10.2307/1229039.
Fricker, M. (2007) Epistemic Injustice: Power and the Ethics of Knowing. Oxford University Press.
Kakoulidou, M. et al. (2024) ‘Deepening the Participation of Neurodivergent Youth in Qualitative Mental Health Research: Co-development of a General Approach and the Evaluation of its Implementation in a Study on Emotion’. JCPP Advances, 4(4). Available at: https://doi.org/10.1002/jcv2.12287.
Pellicano, E., Dinsmore, A. and Charman, T. (2014) ‘What should Autism Research Focus Upon? Community Views and Priorities from the United Kingdom’. Autism: The International Journal of Research and Practice, 18(7), 756–770. Available at: https://doi.org/10.1177/1362361314529627.
Williams, G.L. et al. (2024) ‘“Building our Own House” as an Insider-Only Community-Partnered Participatory Research Council: Co-Creating a Safe Space for Autistic Knowledge Production’. Autism [electronic print ahead of publication]. Available at: https://doi.org/10.1177/13623613241253014.
