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.
Reframing Autism invites parents and caregivers to join Dr Melanie Heyworth for an introductory workshop on parenting Autistic children. In this online workshop, we redefine Autism from an Autistic perspective, examine the ways in which neurodiversity can help you to reframe your thinking about Autism, and discuss how this new understanding can support you to parent with patience, empathy, and respect, for the wellbeing of your Autistic child, and yourself as a parent.
Delivery: Online on-demand
If your child has an NDIS plan that includes a budget line for parent education, and you are plan- or self-managed, you can claim your registration costs for Reframing Autism events from your child’s NDIS funding.
Reframing Autism invites educators and educational support staff to join Dr Melanie Heyworth for an introductory workshop on teaching Autistic children. Very often, Autistic children find schools overwhelming and challenging environments. We will give teachers and other support staff Autistic-endorsed and practical strategies for including Autistic children in your classroom so that everyone, Autistic and non-autistic alike, can thrive.
Delivery: Online on-demand
Duration: 3 hours 20 minutes
Are you an Allied Health, Psychology or Educational professional? Join Dr Melanie Heyworth in this online workshop, as we redefine Autism from an Autistic perspective, examine the ways in which neurodiversity can help you to reframe your thinking about Autism, and discuss how this new understanding can inform the way you approach and support the Autistic children in your care.
The online on-demand PD is grouped around 3 elements – reframing Autism, neurodiversity and implications for practice.
Using the theoretical underpinnings of double empathy and radical acceptance, we explore what Autism is from an Autistic perspective, so that professionals have the requisite knowledge to understand how to foster Autistic authenticity. Part of the learning is focused on some basic neuroscience, so that professionals can understand some of the complexity of the Autistic brain, to be able to work with Autistic neurology. Understanding the Autistic neurotype is key for professionals engaging with their Autistic clients with compassion and empathy.
We also explore the neurodiversity paradigm in more depth, and examine some traditional approaches to Autism (like thinking of the spectrum as linear) from a neurodiversity perspective. From a neurodiversity perspective, we thus explore Autism as an identity, and reframe Autistic communication, body language, stimming, sensory processing and social skills.
In terms of practical information, we also explore the need for relational connections over external motivators, and give some more information about what a strengths-based and person-centred approach looks like when engaging with Autistic children therapeutically.
Learning objectives are thus:
You will also receive:
Delivery: Online on-demand
Duration: 2 hours 30 minutes
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 Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta 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, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.