Things to think about before getting involved in autism research

photo of a woman thinking

I have been a participant in a fair amount of Autistic experience research (what others may call autism research) and I’ve led and assisted on a few more besides. There’s a few things I look for when deciding whether to engage in such research.

First, I look at who is running the research – are they themselves Autistic? And if they aren’t do they have previous work which shows good intention towards the Autistic community? That is going to mean different things to different people, but for me it this means centering Autistic people in their work, and using language which is neuro-affirming. If the researchers use the words disorder, difficulties, conditions, deficits, it is a red flag for me. These words do not reflect my Autistic experience, so the work which would come from my participation would likely not as well.

Second, I see who is funding the research. There are some organisations which fund work to find a ‘cure’ for autism and to stop people from giving birth to Autistic babies. These companies are funding eugenics, usually connected to autism charities such as Autism Speaks. They do not have the best interest of Autistic people at heart, so that is a no-go for me no matter how wonderful the research may seem on the surface.

If I am happy with the research team, the funders and the research itself (and if I fit the criteria), I then keep a close eye on how much emotional labour these projects want from me. Some research can expect a lot from participants – I need to have the spare time and energy to engage in something that is important to me. Some researchers can give vouchers for participation, some even offer cash, these are likely to be in smaller amount so that they are not considered to bribe participants into giving wanted / expected answers. Gestures like these are more likely to get a response from me as I appreciate that people value my time and knowledge.

I also need to know expectations from the get-go and do not appreciate any surprise elements. A researcher who gives clear instruction and keeps up with communication is always a good bet for me – if people want my time, energy and knowledge they need to earn it. I am not trying to sound arrogant when I say this, I just value my time and hope that others reading this know that they can say ‘no’ at pretty much any point during the research process too (which should be made clear to you at the start).

If the expectations are unclear that shows a lack of understanding and care. This is not always the case as keeping everything organised and together can be more taxing for neurodivergent researchers. That is part of the reason I investigate the neurotype of the person leading the project, as I can understand how this person is likely to communicate with me and understand their needs in relation to my own.

There have been many occasions where I have emailed to show interest to not be answered back. I appreciate that researchers, students or otherwise, are busy people – I’m currently working on many research projects, papers and chapters myself, as well as working and raising a small child, so I understand the overwhelm of busyness. However, it is a missed opportunity when researchers neglect potential participants – these overlooked people could hold such wonderful insight and information! Even if they aren’t used in your current study, they are more likely to engage in other work, either yours or someone else’s, if they are responded to.

So many of us have past experience of being ghosted and of being blamed for miscommunication, and we carry this trauma with us wherever we go. Research which doesn’t appreciate Autistic trauma is likely to fail on many fronts, ignoring a potential participants could chip away at that individual’s confidence in engaging with future work. Even a short message saying ‘I appreciate your time and reaching out, but we are at full capacity now’ could make all the difference to fostering positive public involvement in research.

So, a few things to think about before engaging in Autistic experience / autism research:

  • Do I like the project? Does it fit with my beliefs of Autistic experience?
  • Who are the research team and what are their intentions?
  • Who are the funders and what are their intentions?
  • Does the plan of work make sense to me? Have I been given all the information I need to meaningfully engage in this work?
  • Have accommodations been thought of and do I feel comfortable to ask for them?
  • Do I have the time and energy to share myself?

Much of this information should be quick and easy to gather and in most instances the lead researcher shares their contact details so you can reach out for clarity. Remember, if things feel weird, dodgy or uncomfortable to you, you can always say ‘no’ and stop your involvement with the research. You do not need to give anyone an explanation for why you have done this.

Spectrum 10K is a recent UK research project which exemplifies poor and worrying research.

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