I want to reflect on my experience as a research assistant at a UK university some years back. The project was meant to support young people within a pupil referral unit (PRU) to make meaningful pathways from school to further education, work or volunteering. The project took a whole family approach, to support them to support their young person. Many of the students at the PRU were Autistic. The research assistants were chosen for our skill sets and because we both were neurodivergent, which brings some other skills, especially around connecting with similar young people.

Our team had done all the preliminary work on this project before it was paused due to Covid-19 restrictions. It was known that I was Autistic at the interview, and I thought this was a green flag that the other research assistant was also openly neurodivergent. The job was zero-hour and the administration to get paid from the university was awful.

Time sheets were online (not a great start for me) and had to be in at a set time each month (cool, I’ll put a reminder in my diary and phone). I didn’t need to email the person from finance that I would assume I should, I had to email another person, but they were away so I needed to send it to this person. There is nothing more frustrating than not understanding admin. I was consistently getting high scores at university but could not fill in a form, what on earth was I doing trying to get into research in the real world?

The first month of doing this I thought “Gods that was a pain in the arse but at least I’ll know how to do it next time.” Wrong. The next month was also a massive bureaucratic nightmare, so I shared this with both researchers. I told them I needed specific help every month with these forms as I was getting confused and frustrated with the needless complexity of trying to get paid. My executive function was no match for their system. I thought that this was a clear and simple request and fitted in with the needs we were likely to encounter with our participants.

One of the researchers said the timesheets needed to go through them anyway so they have everything lined up for the funders. Fab, then they can pass them on to whomever on my behalf to avoid stress and possible meltdown for me. But it was not that simple, my dear reader.

Five months in, I could no longer deal with these issues. I shared that the meltdowns I had previously talked about were usually self-injurious as I thought that this would make them take my very simple request seriously. The next thing I knew they were writing a risk assessment for me, completely ignoring that this harmful behaviour was due to the administration that I had asked three times in writing to get help with.

This risk assessment was saved to the shared drive which could be accessed by all the other team members. This finally made me understand that this was an unsafe space for me. My resignation letter was put on the shared file too. I was fuming at this complete disregard for my privacy and dignity, and I told them to take both off the shared drive for these reasons. They did but my trust had already gone.  

This project still went ahead, in some manner or other, although I believe the other research assistant quit soon after I did. The lead researcher is well regarded and therefore the work and any outcomes from it will be too, whether their research assistants have gone through hell and back just to get paid every month. I took this position in my late 20s, if I had been much younger, I would not have had the confidence to say “No, I need help with this.” I would have carried on doing the work until something quite awful happened to me. It made me think about the families and young people within the project who may not have had the confidence, resources and ability to advocate for their needs – how were they supported throughout that project?             

This whole situation has put me off working with other people who are not neurodivergent. It’s a shame because the project could have made a big difference to families in my community, underpinned by the research assistants’ combined 60-odd years of being neurodivergent. Goodness knows what they ended up experiencing in the end. When there was some stress earlier this year about my PhD supervisor’s position there was no way I was settling for a non-Autistic first supervisor, I deserve to be understood and supported, and so do my co-researchers and participants.