Participatory Research

“So my name is Zeph and I'm an adult diagnosed autistic. Um, the way that I got involved with the UVM Autism Collaborative is that I answered an ad for one of the researchers to do one of their research projects. And it was this really cool project where they put this neural network of electrodes over your head and had you watch cartoons and answer questions about language. And throughout the course of the several meetings that Emily and I had to do this research project, we kind of developed a rapport.

And then it was a couple months later that I got an email from her and she's like hey I know you're, you like research and we have this collaborative where autistic people are involved in research and would you have an interest in being a part of it. And I think I like, wrote out my application to be a part of it before I even joined a meeting. And my first meeting they voted on my um, on my participation in it.

At one of the autism collaborative meetings we all go around and and we all introduce ourselves and talk about what our interests are. And I'm really interested in adult-diagnosed autistic issues so when Laura mentioned that those topics were of interest to her, I like I just reached out to her and I'm like hey I'm really interested in the topics that that you're working on let me know if I can help out with anything.

And from there we just created a really cool working relationship. We generally will have um, meetings on a weekly basis where we do co-work with other autistic partners. Um and then there's some stuff that's assigned in between the meetings for us to read up on. But we've done qualitative analysis as a part of the group work but a lot of um. One of the projects we're at the phase where we're working on a lot of the language regarding the IRB and the disclosures and the recruitment materials and how to best convey the information that we need to convey but how do we also collect the information we need about, while being respectful of equity issues.

It's been fun. I've learned a lot.”