The pain and the anguish of being an Autistic autism researcher

pile of books

Reading through autism research as an Autistic student or researcher can be emotional and traumatic, especially when so many of us are encouraged to use research which doesn’t align with our lived Autistic experiences.

Using the American Psychological Association’s idea of autistic embodiment, in particular, does not fit with how I know autistic experience to be. During my undergraduate the ‘triad of impairments’ were still criteria within an autism diagnosis, the idea that our neurotype is understood through impairment is difficult to read about over and over.

Additionally, there is work which focuses on what everyone else around the Autistic individual feels, our parents, our carers, our support workers, our teachers, out psychologists, our anybody who is connected to us but not us. There’s almost a taboo of talking to Autistic people when you’re talking about us. This work upholds the idea that non-Autistic (usually neuro-normative) people know about us better than do we. There is something very worrying, controlling and oppressive about that.

When I finished my MRes on transgender and non-binary Autistic narratives (which you can find for free here), I did not want to be held hostage by cis non-Autistic people. I did not want to be told how to overhaul my work to fit their journal brief. My work is not just mine, it’s also the participants who honoured me by sharing the truly intimate parts of their lives. Even through my scrutiny of the data as a trans Autistic person, I am still potentially missing out nuggets of information. If the work then goes through a cis non-autistic funnel a lot of the information is going to be lost completely. Yet these are the very journals that would be beneficial to the sharing of my work because those are the exact kind of people who need education on this.

As a researcher we are so often stuck in a catch-22 of where to publish out work – what’s more accessible, what is free (or cheaper) to read, where will allow a plain language summary beside it. I do not want people to pay for my work because I want disabled people, Autistic people, and trans people to be able to read this and many of us don’t have much money. There are probably hundreds, if not thousands of unpublished works from Autistic autism researchers which will likely never see the light of day. What a waste of beautiful and important data.

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