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.
Listening to Autistic voices about their experiences will prompt research questions that genuinely answer the needs and priorities of the community.
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.
There have been many community-informed priority setting research projects globally in the last number of years, so the results of them are a good place to start. For example, in Australia and New Zealand, the Australasian Autism Research Council (AARC) has released a number of reports around Australasian Autism Research Priorities, which outline the Autistic and Autism communities’ priorities for future research. Of course, having an advisory group drawn from the community will also help you to ask the right research questions that are relevant and meaningful to Autistic lives.
Reframing Autism advises using identity first language (e.g. Autistic person, rather than person with Autism), even for journal publications.
Autism is intertwined with how our brains are wired, and can’t be separated from who we are.
When people say someone “has Autism” or is a “person with Autism”, it has an undercurrent of viewing Autism as an illness or disease. This reinforces stigma.
By using identity-first language instead, you embrace the person’s whole personhood and recognise that they are simply a different type of person – a neurodivergent person – not a person with an illness.
It is really important for researchers to be exposed to the vast diversity of Autistic voices, including intersectional Autistic voices. Often, when we feel comfortable working with Autistic advisors, we continue to work with the same people. Those people will undoubtedly have enormous value to add to your work, but you will, in effect, create an “echo chamber”, since you will be relying on the same experiential knowledge. So, each project needs a bespoke and relevant advisory group, whose lived experience mirrors that which you are researching. Thus, if you are research non-speaking Autistic individuals, your advisory group should include non-speakers.
Or, if you are interested in understanding Intellectual Disability, who better than those who identify as having an Intellectual Disability. Autistic parents are the lived experience experts on Autistic parenting, just as Autistic youth are the lived experience experts on matters pertaining to their age group. As much as possible, matching your advisory group to your research demographic is crucial. If you’re not sure how to go about getting in contact with some of our intersectional community members, ask us! We might be able to help.
First things first, make sure you are absolutely clear on any accessibility needs your collaborators might have, and make sure you make any necessary accommodations. Do your collaborators need an Easy English or plain language translation? Are online meetings accessible, or would email or text-based chatting be preferable? If they are meeting you in person, do they know where to park, how to pay for parking, how to get to your office, or can you meet them somewhere to alleviate some of these anxieties? Send any material well in advance, and make sure any actions to prepare for the meeting (or within the meeting) are highlighted clearly.
Set expectations (and keep to them). Even just a “check in” meeting can have an agenda so there are no “surprises”. Be prepared to be challenged and to sit with your discomfort. We have some more tips for communicating with Autistic people here.
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:
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.