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, an academic researcher in our team asked our autistic colleagues some questions about what it has been like working on this project from their perspective.
Academic research can be guilty of being ‘about’ neurodivergent people, without actively ‘including’ neurodivergent people in the research. We hope this blog helps emphasise how important and easy involving neurodivergent people in research can be.
What advice would you give neurotypical researchers, wanting to engage autism experts-by-experience in research?
“Understand what autism means for that person and it will be easier to form a good working relationship with that person” (Leon)
Lucy: “Make the aims of the research and also the expectations for us very clear. I really enjoyed feeling part of a team, so including us in as much as possible is definitely something I would recommend to get the most out of us!
“We are skilled in many diverse ways, meaning that we can potentially help with lots of different parts of research, and just like anyone else, it is important that we feel like a valued and respected member of the team. Researchers can make sure that we feel this way by offering adjustments such as clear agendas for meetings, and understandable, concise language, written in a way with isn't potentially overwhelming (e.g. use of bold and italic text, paragraphs, and grammar).”
Leon: “Take the time to get to know the expert by experience. Remember that, while autistic people have traits in common, we are individuals. Understand what autism means for that person and it will be easier to form a good working relationship with that person.”
Has there been anything about working in research which surprised you?
“I am used to feeling like I'm a liability or something to be studied, and for my voice to not be taken seriously, so for people to listen to me and give me feedback on my ideas was really lovely” (Lucy)
Lucy: “It surprised me how respected I felt by the researchers and the team. I am used to feeling like I'm a liability or something to be studied, and for my voice to not be taken seriously, so for people to listen to me and give me feedback on my ideas was really lovely.
"It has been really good for my self-esteem to work in research, as I feel I am able to understand a lot of what was being spoken about, and I am so passionate about the trial and it's cause, so being able to work on this has really made me happy. I was also surprised about how easy it was to ask for adjustments, and for the adjustments to be taken seriously and actually put in place, without a fuss! It made taking part so much more accessible for me.”
Leon: “I was not sure what to expect when embarking on this project, I would say the most surprising element has been how enjoyable and interesting it has been to collaborate on an academic research project.”
What has been the best thing about the experience of working on an autism research trial?
“Having our voices heard and our views considered and incorporated into the research project” (Leon)
Lucy: “I think the best thing about this experience has to be the knowledge that I am actually going to make a difference in a big way, about something which I am so passionate about! I of course love that I have been able to learn so much about the research process, and that I have gained more confidence in my skills and self-worth, but I think the main reason for the research in the first place has to be the best part of the experience.”
Leon: “Having our voices heard and our views considered and incorporated into the research project. I feel that our different experiences as academics and experts by experience have been treated as holding equal value.
“Our active participation has allowed us to get a full sense of how research works. The relationship between us has been harmonious, as there is a mutual respect for each other’s expertise and a willingness for us both to further our knowledge as we continue to develop this study.”
What could have improved your experience of working in autism research?
“It would have been nice if we had a clearer way of laying out next steps for us to do, as emails can get kind of confusing when lots are being sent!” (Lucy)
Lucy: “I think it would have helped to have a clearer picture of what each member of our team were going to do between meetings, as it was a bit of a surprise sometimes to hear what has been going on, and made me feel a bit left out. I think it would also have helped to have more of a calendar on which we can all put in our availability, so we could see more clearly when we are all free for meetings. Also, it would have been nice if we had a clearer way of laying out next steps for us to do, as emails can get kind of confusing when lots are being sent!”
Leon: “Overall, the experience working with the team has been fantastic. At times it has been a bit more difficult when we have had to communicate with others outside the team (e.g. HR and admin teams) regarding matters to do with the study and our roles, so maybe if they were more aware of how to communicate with us that may have helped.”
What would you say to other autism experts-by-experience about getting involved in research?
“Don't be afraid to ask for adjustments! … It can be daunting working with neurotypical researchers... but I have learnt that I am more than capable of this, which means you are too!” (Lucy)
Lucy: “Don't be afraid to ask for adjustments! A lot of the researchers who want to have people with autism on their team know that there may be adjustments that need to be made, so it is important to let them know what can help you. It can be quite daunting when working in research with neurotypical researchers, but I have learnt that I am more than capable of this, which means you are too!”
Leon: “Your views are incredibly valuable to researchers! If you are interested in making a difference in the way autism is understood, I would encourage you to get involved in research in whatever way you find most comfortable.
“It is exciting taking part in research as you are aware that the work you are doing has the potential to make meaningful long -term changes. Working on a study can entail a variety of tasks from planning and progress updates, to working directly with participants and even presenting the development of the project to external groups who have an interest in what you are doing.”
What benefit do you believe has come from this collaboration?
Leon: “I believe that the benefit that has come from collaboration has been the sharing of perspectives. Working with researchers has meant we have been able to shape the study in a way that takes into account the diverse experiences and backgrounds of autistic young people.”
How can someone become involved as a participant?
Leon: “Academics normally share when they are about to conduct research and ask if people would be willing to participate. One of the things we have been working on is exploring ways to make the recruitment process easier and more accessible to those who want to take part in research as a participant.”
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