Our team includes both neurotypical and autistic researchers. You can find out more about our team by visiting the ‘About Us’ page above. As a team, we have been reflecting on what it is like working with people who think differently to us.
In this blog, our autistic researchers asked our non-autistic colleagues some questions about what it has been like collaborating with people with autism ('experts by experience') .
Did you find anything surprising when working with us?
"There is such value and richness to working together for a shared purpose” (Ben)
Kate: “I’ve been lucky to work alongside autistic people in a few previous projects. Something I love about doing this is that many autistic people have great strengths in thinking logically about research methods and plans, even without having had any research training or experience. So, it hasn’t surprised me, exactly, but I have been delighted to work with such sharp minds!”
Ben: “Like Kate, I’ve worked on several projects with autistic people, but each time has been a joyful and insightful experience. I learn so much and there is always something new to consider with our research and projects. I know first-hand there is such value and richness to working together for a shared purpose. It does still surprise me sometimes, but it really shouldn’t!”
Annabel: “This project has been my first time working with autistic colleagues. Even though I’ve always believed what they say: ‘when you’ve met one autistic person, you’ve met one autistic person’, getting to know our team has really emphasised this point to me. It’s felt like working with any other bright, funny and insightful colleagues – we all have our own quirks and personalities! What also surprised me was how easily they just slotted in and got involved. I can feel a bit nervous joining a new team, but if they were nervous, they didn’t show it!”
What adjustments did you make for us, and how has working with experts by experience changed the way you have carried out research?
"The use of much clearer and concise agendas and plans for meetings… it has also proven really helpful for me personally, to get my thoughts in order” (Annabel)
Annabel: "The first thing that comes to mind is the use of much clearer and concise agendas and plans for meetings. I would absolutely continue to do this in the future, as it has also proven really helpful for me personally, to get my thoughts in order and ensure meetings cover exactly what they are intended to."
Kate: "Something I’ve had to pay lots of attention to is not slipping into using jargon and acronyms. This has helped me focus on the important principles and ideas behind how trials work, rather than getting caught up in complicated jargon."
Ben: "Respecting communication styles to enable comfortable and meaningful contribution. We mostly work online so we make sure that we encourage different ways of communicating. Example adjustments could be using the chat function, video camera’s off or providing ways to feedback after meetings. I’ve also learnt that some people may switch the way they communicate between meetings so I will make sure in the future to always re-iterate the different ways we can communicate together."
Why did you want to have us on the team?
“I wanted to make sure that this project had autistic individuals as genuine partners at a leadership level” (Kate)
Kate: "So much autism research happens without talking to autistic people. There has also been a tendency to include autistic people’s perspectives in a tokenistic way. I wanted to make sure that this project had autistic individuals as genuine partners at a leadership level."
Ben: "I am passionate about empowering autistic young adults to directly influence projects and research that affect them; it is very important to me. Having co-produced the online course together with autistic young people at Ambitious about Autism, it makes complete sense to work together on the research and would frankly feel odd not too!"
Annabel: "Given that the main researchers on this project (and most academics!) are not autistic, it was important to us that people with lived experience of autism were involved in each stage of the project. Involving people with lived experience in research has been shown to increase the relevance of the work, and its practicality in a real-world context. You can also get caught in the same research pitfalls if you don’t get some fresh perspective!"
What have been your key take-aways from working with experts by experience?
“ A lot of things are just really unnecessarily inaccessible.” (Annabel)
Annabel: "Firstly, I’ve found it really revealing. It has made me much more acutely aware of how assumptive, and frankly confusing, so many processes are. This is both regarding research practices (for example the jargon we use!) as well as business processes, such as onboarding new colleagues. A lot of things are just really unnecessarily inaccessible.
"I’ve also found it empowering, having learnt from my colleagues about the power of advocating for how I like to receive information. I’ve always assumed it is a reflection on my abilities if I can’t follow large, new chunks of information (particularly in academia). I’ve never questioned the way the information has been presented to me! There is definitely something to be said about challenging the status quo, even regarding communication styles."
Ben: "I’ve found it refreshing, but also a supportive environment. As my background isn’t academia, it has benefited me as Lucy and Leon have asked questions and clarifications that I may not have thought of or may be a bit too shy to ask!
"My key takeaway is however big or small the task at hand is, there should always be autistic people involved at every stage to enable meaningful research."
Kate: "I have loved working with experts by experience. I think it forces us to make every part of the research accessible and grounded in lived experience of autistic people. And if we’re not doing that, what is the point?
"A key takeaway for me in leading this project is how important it is to ask funders for more time and money to make coproduction happen in a way that fairly rewards everyone involved. We can’t create meaningful change without giving the proper time and compensation to those involved, to really respect their input. There are often systemic barriers to making this happen, but it is important to push against this wherever possible."
Why do you think experts by experience are not used more often in research projects?
“Work which takes more resource, such as coproduction, but which may not result in extra publications, is not always rewarded. A shift in research culture needs to happen” (Kate)
Ben: "Honestly, I think that if you haven’t worked together in this way before, it can be quite daunting for all involved with lots of uncertainties and unknowns. There is so much important research that has taken place to support autistic people without autistic people being directly involved but I think we are reaching a turning point where we recognise the value and benefit of co-researching with autistic people. I’m very much believe in the fusion of lived experience with professional experience. Hopefully the ATAG blogs and other amazing research that has been undertaken with autistic people can inspire others!"
Annabel: "I think there are likely many reasons for this. People have a preference for the status quo, preferring to not change their working practices or ways of thinking. I think ignorance and stigma can also then compound this; assuming that working with people who think differently might be ‘difficult’ or require more time and energy to reimagine things. My experience with ATAG is that the reverse is true - it has actually demystified a lot of the research process BY involving experts-by-experience, and made a lot of research processes simpler. It has only been the inaccessibility of already established systems that has slowed things down."
Kate: "I think there is so much time pressure on researchers, and a sense that we should be producing a very high volume of work at all times. This means that doing work which takes more resource, such as coproduction, but which may not result in extra publications, is not always rewarded. A shift in research culture needs to happen to support researchers to meaningfully work alongside those they are studying. I think it is essential that we support systemic change which rewards and values researchers for doing this sort of work."
What advice would you give to researchers who work with autistic people?
Annabel: "Educate yourself on what adjustments may be required, but also get to know your autistic colleagues. Be led by them, their motivations and their needs."
Kate: "Think carefully about how you are going to present the research process and jargon so that autistic people can fully contribute to your work as equal partners. This will take time!"
Ben: "Talk to researchers and charities who work with autistic people in this way! And also autistic people who have been co-researchers. There is so much good practice out there but also passion and willingness to share experiences. Sharing the not only the benefits of working in this way, but also the challenges and providing solutions to overcome them can be very powerful."
Would you work with us again?
Annabel: "Absolutely! No hesitation. You have challenged us so much to think harder and be more creative to overcome challenges that researchers can often become lazy about. There’s something so refreshing about how you sometimes cut through our research ‘waffle’ with a simple: “So how are we going to fix this then?”. It’s helped us avoid so many of the excuses and circular discussions that can otherwise prevent solutions being explored."
Kate: "I very much hope we will!"
Ben: "Always! It’s an absolute joy and pleasure. Best part of my job!"
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