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 that doesn’t align with our lived experiences.

Using the American Psychological Association’s framing 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 in autism diagnosis. The idea that our neurotype is understood through impairment is difficult to read about over and over.

Being encouraged to reference the APA is difficult, so I often reference Autistic Self Advocacy Network’s definition. The use of “grey” literature reviews are becoming more common, meaning blogs and other information sharing can be referenced in academic work. This means community knowledge can inform academic knowledge more directly.

Unfortunately, some autism research continues to focus on what everyone else around the Autistic person feels: our parents, carers, support workers, teachers, psychologists, anybody who is connected to us but not us. Talking to Autistic people when you’re talking about us seems taboo in research. Work which solely focuses on others experiences of us often upholds that neuro-normative people know us better than we do. There is something very worrying, controlling and oppressive about that.

This stems from the idea of supposed vulnerability of Autistic people. Of course this is true for many Autistic people, especially those with complex medical needs. However, to assume that all Autistic people are vulnerable is untrue. This assumes that we have no knowledge, understanding and insights, and undermines our autonomy. And this autonomy is more often undermined or ignored for the u non-speaking, global majority and complex needs.

When I finished my MRes (Master of Research) on transgender and non-binary Autistic narratives, I did not want to be held hostage by cisgender neuro normative people. I did not want, or need, to overhaul my work to fit their journal brief. Especially around my continued use of identity first language. I should not need to explain this time and time again, especially when other more harmful and inaccurate terms still exist in research (including “mental r*tardation).

Furthermore, my work does not belong to me solely, it is also belongs to the participants who honoured me by sharing intimate parts of their lives. Do they get a say in how their lives are presented and in what journals? This is why I’m taking a participatory approach in my PhD (more on that here).

Even through my scrutiny of the data as a trans Autistic person, I am still potentially overlooking important information. If my work is put through a cisgender neuro normative filter more of the information will be lost or misinterpreted. Yet these are the very journals that would benefit by sharing my work because those are the exact people who need education on trans Autistic lives.

As researchers we need to think carefully about where to publish our work – what’s more accessible, what is free (or cheaper) to read, what journals appreciate a plain language summary. I do not believe that people should have to pay to read academic work. I want disabled people, Autistic people, and trans people to be able to read my work, and putting that behind a pay wall makes it less accessible. Knowledge should not be gatekept and hoarded by the elite who can make whatever comments they like about marginalised people behind closed doors and pay walls.

There are probably hundreds, if not thousands, of unpublished works from Autistic autism researchers that will never see the light of day. What a waste of important and beautiful knowledge.