Researching autism as an autistic

Presentation on 'researching autism as an autistic' to UKC FemSoc December 2018

Being an autistic researching autism

I think a good place for me to start is introducing myself. My research area is exploring autism in differing faith communities. Interestingly, I have neither a psychology, nor a sociology background. Many people assume I did a degree in psychology when I tell them what I do. I firstly trained as a linguist (German and French), and after a few failed jobs that I realised did not fit me, and were slowly killing and breaking me, and too many failed job applications, I went and spoke to my former disability advisor from my university. It was his suggestion...: 'Krysia, have you ever considered doing a masters in autism?' At that point, I was completely against the idea of further study through doing a masters. But this felt different. So thanks to him, I managed to talk my way onto the masters course I did and found the field of autism and faith communities I am so passionate about.

Considering my experience as an autistic researching autism, here are the four key areas I have broken them up into:

• barriers faced
• emotional labour
• being an unintentional activist
• questions of identity

Image description: the four areas I conceptualised impacting my experience as a researcher
1. Barriers faced, 2. Emotional labour and myths, 3. Being an unintentional activist, 4. Questions of identity

(c) krysiawally, 3rd December 2018 for UKC FemSoc

I will take each area in turn and delve into some of the issues and complexities that arise under each area. I could say much more under each part, but will stick to key parts in my experience: 

Barriers faced
Communication and expectation differences can lead to misunderstandings from mentors and colleagues, as we, as autistics, do communicate in a different manner and the communication of expectations is part of this. The viva is one massive fear of mine, given the level of grilling and amount of non-verbal communication that occurs in oral exams, when you could whack me round the back of the head with metaphorical non-verbal cues and I'd totally not notice. I personally am quite scared of the majority of people as I really do not trust anyone. I guess this also links into the next point: academia has an incredibly interpretative and subjective nature, given the huge role of peer review as a means of quality control and that others might bring unconscious biases unintentionally. In a field where communication of a certain type might be misunderstood, paired with the subjective nature of academia, does not always bode well.

Not everyone wants to tell others they are autistic: it is massively stigmatising (when I'm of the opinion it should not be). I am lucky in that I do have supportive supervisors, however it can be pot luck. As I have mentioned before (and will do again), the university system is not always the most flexible to the needs of disabled and/or neurodivergent students... Reasonable adjustments might not always be what is necessary or sufficient in some cases - rather what it actually thought as necessary or cost effective. There's also the thing of different people having a different view of what is 'reasonable', and also that I know from my own experience I have no idea of some reasonable adjustments I could have asked for.

Emotional labour

There are various myths that exist regarding autism and autistic people, of which some in academia seem to be down to autistic people to overturn and challenge, leading to emotional labour (having to point out the obvious to you). There's these recurrent ones that linger in academia of autistic people as white-het-cis male, therefore as a homogenous group. Pfft. The representation of autistics is often incomplete and fragmented, and some demographics missed or neglected, for various reasons (recruitment can be difficult, as any researcher or student including myself can tell you, but sometimes we don't think outside the box enough or are too constrained by these things called time or money - all poor excuses). 

I also have an issue with defining people on contribution to society alone through the usage of 'functioning labels', as they harp back to eugenics (quantifying who is worthy of life through their value to society). Through us using these labels as researchers, we reinforce wider society's usage of these terms. I completely get how difficult autism is to define, but we really need to take a stock check where the terminology we use comes from and what connotations it has. (Maybe this leads onto us reapproaching how we define autism?) Linked to eugenics, the currency that ABA (applied behaviour analysis) has in the behavioural research community and teaching in autism at some universities. I will leave ABA to another blog another time, given it's problematic nature, questions of power dynamics and poor study quality, however I feel my stance, both academically and personally, is quite clear.

Being an unintentional activist

For some people, just being faced with an autistic face to face as an academic peer can confront their perception of autism and autistic people. Often we are seen as 'people who are researched on', not those who 'do credible research' or 'sit face to face with researchers as equals'. Some only see autistic people as children, or those in supported living, or the stereotype of white-cis-het-male who can't xyz. This can be said for some academics and policy makers, where autistic and other groups may not always be a part of the policy making process, rather what is deemed appropriate at that time and moment, with no input from said groups. Just from being present and demanding equity among some individuals is challenging and potentially uncomfortable, and that's just the act of being a researcher, let alone the ideology you might have or your research topic.

Questions of identity

There are various questions surrounding identity that can be opened through study of a topic that brushes so close to you that it is a part of you. Here are the three I thought of while planning:

• My identity vs. society’s perception of autistic people 
• My identity vs. prevalent academic understanding of autism
• My identity vs. broader autistic identity in the autistic community

Finding where I fit in all of this and my own position on things, rather than just aimlessly following any particular group, leads to further critiquing and finding out what I actually think and believe about things. (Looking to the group I was presenting with --) I can say each one of us has had to discover who we actually are and have all been on a journey. I add, for me at least, it is not only the reading and critiquing of academic literature that has formed an important part of my journey, but also meeting other autistic academics, students and well-read people and our allies. I love to listen and question why people think the way they do. Since our voice is not always so present in the world of research, conversation and discussion has been a way to find some of the debate and encouragement I have craved.