For too long now, Autism research has contributed to the marginalisation and stigmatisation of Autistic people, involving too few Autistic voices (even as participants) and refusing to attend to the priorities and needs of the community. Ultimately, despite billions of dollars having been spent globally on Autism research, we really don’t understand Autism very well at all. And, sadly, all the research that has been done has not been translated into tangible benefits for Autistic people directly – our mental health, wellbeing, and quality of life have not been positively impacted by the burgeoning of Autism science.
If you’re an Autism researcher visiting this page, you’re likely ready to challenge the status quo of Autism research and undertake more respectful, more collaborative research which has Autistic wellbeing at its heart.
The research we do should make a powerful, substantial and genuine impact on the actual lives of Autistic people and our families and allies. Yet, when we consider the number of journal publications in Autism (around 8,000 in 2021) the lives of Autistic people are just not changing. We still face stigma, discrimination, exclusion, isolation, inequalities, and poor outcomes across many domains including physical and mental health, life expectancy, education, and employment. The research status quo, then, is simply not good enough: we are not doing enough to make a difference.
As researchers we have the opportunity to make a real difference to the quality of people’s lives. But we can only do that by making sure that those people – Autistic people – are involved in our research in multiple ways and across the complete research lifecycle.
You may ask, how do we ensure our research is respectful, relevant, and meaningful? Luckily the answer is already well attested in other fields and disciplines: participatory research. Participatory research means that we make a commitment to engaging, collaborating, and working directly with the Autistic community to produce any research about our community. Autistic voices are not “optional extras” or sidelined: they inform and shape what research we do, and how we do it.
No longer can we be content to think about Autism research done to the Autistic community, or even done for us. We must commit to doing Autism research with the Autistic community.
How might this be achieved? We must, of course, build relationships with our Autistic colleagues, co-researchers, advisors, collaborators, contributors, and participants, and these relationships need to be grounded in mutual trust and respect, and in the explicit acknowledgement that experiential knowledge has equal value to research experience. We need to be ready to listen to and learn from the Autistic community, even if that learning challenges us, our assumptions, or our received understanding. Ultimately, we need to be ready and willing to share the power dynamic with the Autistic community, and to offer genuine power to Autistic individuals within our research. The literature on relational ethics of care might provide you a good starting point to understand the dynamics of such power shifts.
Participatory research can be undertaken in many different ways, some of which might feel overwhelming to you right now. Nevertheless, there are some practical next steps you can take to increase the participatory nature of your research.
An obvious starting point is employing an advisory group to guide the full lifecycle of your research (perhaps even before funding is secured for a project), where advisory group members are drawn directly from the researched community.
You might also like to consider employing Autistic researchers and making sure that your research teams include Autistic voices. This will not only benefit the quality, relevance, and translatability of your research, but will likely increase recruitment numbers and ease.
Simply taking the time to connect with your participants, to attend to power relations, to give them the time and space to know and trust you as a researcher, before you look to gather their data, being sensitive to their needs, experiences and journeys, being aware to their lived realities, their pasts and their presents, allows us to be empathetic in the way we engage with the people we are researching. And remembering that the people we research are people, and they deserve more than a transactional approach to the very personal and sensitive data they are likely to share with you.
As researchers, we each have a responsibility to do better. You can contribute by:
Working with Autistic partners might be daunting, and it won’t be problem-free. But the benefits to your research, to its relevance, and – above all – to the Autistic community are manifold.
Here, we’ve covered some of the more common questions we’re asked around things like language and therapies… however, we’re always happy to help. If you have a specific enquiry that you’d like our input with, please feel free to send us a message with any queries.
There’s no right or wrong way to start on your journey to being an Autism researcher who uplifts the Autistic community – you can take whichever steps you need, in whichever order works for you. As researchers we know that learning is lifelong, and there is always new knowledge to acquire and understand!
In addition to the steps we’ve spoken about above, there are some basic things you can do to challenge yourself to be a better researcher. Here are some steps that you might like to consider, in no particular order:
• Learn more about Autism from Autistic people and perspectives
• Read articles or watch videos by Autistic people and learn from their experiences
• Connect with other Autistic and neurodivergent people – our social media channels are filled with likeminded people, and are a great place to start!
• Take a course, professional development or masterclass to gain further insight.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Amangu, Awabakal, Bindjareb, Birpai, Whadjak, Wiradjuri and Yugambeh peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past and present, for their wisdom, their resilience, and for helping this Country to heal.
Donate