Today we have a guest blog from visiting PhD student, Jackie Ryan.
Recently I tweeted about a project that I am excited to be working on with Sue Fletcher-Watson in the DART lab. I have been on twitter for 10 years, but with a very quiet presence, mainly retweeting interesting posts. Of course, I mentioned Sue in my tweet, and she is much more of a presence on twitter than I. The first responses to my tweet were likes and retweets, and I was happy. Then came the not so favourable responses, to which Sue responded with a fabulous thread. However, I was a bit upset, and Sue was reassuring (much appreciated). Having taken some time to reflect on my first “negative” experience with twitter, I feel compelled to share my reflections.
I am autistic. When that was made explicit, there was a slight change in the tone of tweets. Hmmm, might there be autistic privilege? Was the project given a bit of a break because the lead was autistic? I actually hope so, because I believe, if we are going to shift the system, we need people with privilege to pave the way.
I am a PhD student in Canada. I have not been able to find any published examples of Canadian participatory autism research with #actuallyautistics. Parents are included, as are clinicians, researchers, and service providers, but not #actuallyautistics. My aim is to change that. There are many ways to start the change and I have chosen to start with increasing capacity for participatory autism research. My doctoral research will result in an open-access integrated training package for autistic people and autism researchers that will increase capacity for participatory autism research for both autistic people and autism researchers.
My decision to start with training for autistic people (rather than researchers) was both strategic and fortuitous. Fortuitous, in that Sue agreed for me to come and study in her lab and had this relevant project for me to lead while I was here. We need allies like Sue, and her research privilege, to champion our cause with other researchers. Strategic, in that I feel more comfortable taking my first plunge into this kind of training with autistic people, a group with which I feel affinity.
I hope you will want to come on this journey with me. There are several ways to get involved in our project: respond to our survey about training content (coming soon), volunteer to collaborate with me (more info coming soon), and/or attend the training (which will include an opportunity for evaluation and feedback).
Together we can shift the system so that participatory autism research becomes the norm.