Why I love my community

This is why love my community…

Sometimes, despite my best efforts, I’m not able to achieve things on my own. I have to throw things out into the universe and hope that others step up to the plate to back me up.

Yesterday, this happened beautifully after I emailed my mailing list about some new research I’m involved with. You can see the email here: Autistic and Use Social Media? Call for Research Participants

Navigating the world of academic research can be immensely problematic for Autistic people, not only from the perspective of the participant, but also from the perspective of the researcher.  There are barriers and gatekeeping everywhere, and so much compromise has to be made.

When research is undertaken on Autistic people it problematically requires the free labour of Autistic participants, with the vague promise that the research will in some way change things for the future.  When researchers view that free labour as problematic and want to thank participants in some way, that requires having money, which in turn requires funding; and often, when you seek funding you open yourself up to all sorts gatekeeping, because funders often dictate what that money can be spent on and how things must be framed; there are requirements that must be met. Research also, generally, costs money in terms of human and physical resources (people time, travel time, technology requirements etc) and academia covers that cost via funding.

Separate to that, there are ethics committees who also dictate what you can do and how things must be framed and worded, and who demand complex justification for what you are doing. With the irony being that so much seems to easily get past ethics committees with regards to autism research that I would deem immensely problematic and unethical.

I’m co-supervising this piece of research at the moment (Exploring potential benefits of social media in an autistic adult population) that sent out a call for participants yesterday. It’s looking at the experiences of Autistic people using social media, and the interaction between that social media usage with relationships, mental health and masking. Some of you will have seen that email, or my social media post, some of you responded directly to me, and some responded directly to the research lead, Alice (who is an early career researcher and very new to all of this).

And I bloody love that you did get in touch

The research came with restrictions. It was only UK focused and the only participants could be those with a formal diagnosis of autism. I, along with others, have disagreed with those restrictions from the very beginning and made my objections clear about those restrictions to both the wider team, and in dialogue with both the funders and ethics committee. 

UK based – when focusing on social media usage, online relationships and mental health is then being UK-only is, in my opinion, weird (as the whole point of online interactions is that geographical boundaries are defunct in a lot of ways).

Formal diagnosis only – is immensely problematic.  My argument from the beginning has been that we are researching the experiences of Autistic people, not the experiences of people who have a diagnosis of autism; that there are immense barriers to diagnosis among underserved populations, which is why self-identification is particularly valid and all this might feed into the experiences of Autistic people using social media. Rather than gatekeeping access and receiving limited data, opening up to self-identified people actually provides richer data and serves the purpose of the research better.

Like I said, sometimes my voice and opinion doesn’t always carry enough weight on its own, despite all the evidence I can place in front of people. 

I do have faith in my community though, to step up where I fall short, and what I hoped would happen, did happen. 

I could not blatantly say: “please push-back against this”, but I hoped that there would be push-back, and there was.  More than enough to add fuel to my arguments to go back to the ethics committee and funders with. Believe me when I say there were emails and Whatsapp messages furiously flying around until the early hours of this morning.

The number of responses highlighted the seriousness and complexity of the situation to some of my colleagues, and, with due credit to them, this has not been easy.  While some are seasoned researchers, Autism research is new to them, and they are not used to this level of challenge and complexity.  They’ve had to sit with some real discomfort over the last few months, and the last 24 hours particularly, and they have responded to it brilliantly. And not only that, this has enabled them to have the confidence themselves to push-back now.

The responses from community members evidenced a number of arguments I had made:

– About the privilege of researchers, but also the privilege of having access to a diagnostic process that not all have access to (whether I agree with that process or not).

– intersectionality and the barriers and overshadowing faced by those with intersectional experiences, not only on accessing diagnosis, but also accessing self-identity, safety, self-knowledge and understanding.

– The role of participatory work and co-production in decolonising academia and academic research, the active need to challenge normative systems, expectations, and destabilising and challenging the power of a westernised system of academia which perpetually creates barriers in both accessibility and the assumptions it forms.

– The activist aspect of research for disenfranchised and marginalised groups and their allies, as so beautifully described by Monique Botha in their piece: Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production – whereby as Autistic scholars (and our allies), we have to consistently ask “where do I sit?”, “where do I push back?”, “where do I compromise?”, “how do I balance my ethics and morals while remaining complicit in such a problematic system?”

And lastly the power of reframing language, especially in understanding the problematicness of taking a term like ‘self-diagnosis’ at face value. A term like that is interpreted negatively in professional spheres as it devalues a diagnostician’s role.  As a face-value term it is problematic – nobody is diagnosing themselves as Autistic, that is a job for clinicians.  What is actually happening is that people are self-identifying on the grounds of usually extensive research, the recognition of mutually shared experiences, and feelings. So, this discussion has helped others with the research team understand this nuance better.

I have no doubt that discussing all this and having a large number of others backing this up, will also change how the data is interpreted and understood in more powerful ways (and make my life easier at the other end!)

On this specific research itself, I don’t think the UK-only restriction will be lifted, simply because the funding money comes from a place that only wants to measure people living in the UK.  This is irritating, but hopefully this research will provide the platform for further research, which is non-geographically focused.

While I obviously cannot guarantee it, I am very confident that the restriction on formally diagnosed-only participants will be lifted, and that is thanks to you.

So, all I can say is a huge thank you to those who were frustrated and infuriated, and especially to those who took the time to make their feelings clear.

Even if the restrictions end up not being lifted at all, what’s important here is that constructive engagement between the community and front-line researchers has happened. Understanding has been reached, connections have been made, and change has occurred, for this team at least.  Think of the ripples of change that will occur from there. It might not impact this piece of research, but it will shift things for future pieces of research as those team members go off and do more research and work with others.

Change is happening, slowly, and bit by bit, and we’re all part of making that happening, no matter what we role we play.

We can’t always win every battle, nor every battle completely, but even partial victories are huge wins. Even if we feel like we’ve lost, that doesn’t mean that we haven’t won in ways that we might not see evidence of, or recognise. Sometimes it’s as simple as we’ve educated people who want to be allies, to be better allies.

Watch this space, the moment I know more about whether the lifting of restrictions has been approved, I will update you.

Kieran

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