#AutisticPhDiary 1 – A Journey Begins…

This is the first post in a new blog-writing project I have decided to undertake during the last few months writing my PhD thesis. I am due to submit my thesis no later than 29 September 2020, and that date is beginning to loom frighteningly close on the horizon. I am feeling lots of things about the imminent end of a 5 year-long “journey”. There are two main reasons why I have decided to document these final few months – the first is personal, as regular writing (particularly for an audience) helps me to document, process, and structure my experiences; thereby making them less overwhelming. The second is that while there are some great examples of literature discussing how the viva process may be adapted for autistic doctoral students, (see for example, Martin 2010; Chown et al., 2016) what I would really like to be also able to read is an account of the experiences, and emotions of an autistic PhD student approaching the submission of her thesis; so I have decided to create such an account. I have written elsewhere (e.g. here) about the impact of my autistic identity on my self-confidence as a researcher, and it is certainly the case that this aspect of me is having an impact on how I am making sense of the prospect of a period of intense hard work alongside significant transition.

Of course it goes without saying that my autism is not the only “part” of me that will be relevant in what I document in this series – other characteristics such as my physical impairments and my part-time employment, as well as the wider social context (not least the fact that we remain in the grip of a pandemic) are factors that influence my views and experiences, and therefore my writing. It should also go without saying that this account is the account of one autistic researcher[1] , and is not in any way attempt to represent the voices of any autistic except myself. It should therefore be approached as a “diary” rather than as a “how-to guide”.

I aim to post a weekly update, each Sunday evening.

Week One – 25th May to 31st May

I am currently working on one of the empirical chapters of my thesis. This one uses interviews with 14 disabled activists to explore their views on advance decision-making. Advance decision-making (including Advance Decisions to Refuse Treatment and Lasting Power of Attorney) enable an adult in England or Wales to make medical decisions in advance of a time when they lose the mental capacity to do this themselves; or, to nominate someone else to make welfare decisions in their best interests. I am interested in the ways in which disability-identity and politics influence the ways disabled people approach this topic, and how we may be supported, and support each other to make informed decisions about this key aspect of our lives. This week, I have been particularly looking at the roles my interviewees envisaged for Disabled People’s Organisations in providing information and support on these topics. I am really excited about this part of the study in particular, as I think it has the potential to generate the kind of “real-world” impact about which I am particularly passionate.

I made an exciting breakthrough in my understanding of the methodology I am using (Thematic Analysis) too this week, as feedback from one of my supervisors pointed out that I had fallen into a trap of beginning each sentence with an individual pseudonym, and basically simply listing the relevant quotes from my data. Having read the feedback, I had a mental conversation with myself that went roughly like this:

“It does sound wrong with so many names at the start of sentences”

“… But if I make it less tied to individuals, I’m going to be generalising beyond that which is supported by the data. That feels uncomfortable…”

“Why is that?”

“… It’s because you are only listing quotes. You’ve rushed into writing and haven’t allowed your thinking to “cook” sufficiently. This means you haven’t actually added any analysis in what you’re writing. It feels wrong because it is wrong. You need to go beyond the individual quotes and think about what they tell you about the topic.”

I know that there is fabulous methodological literature on Thematic Analysis, that expresses precisely this issue much more eloquently than I have put it here, but there was something very special about the fact that this was my discovery (having been pointed in the right direction by my supervisor) in relation to my data that made this a powerful learning experience. I always find it easier to learn from concrete experiences like this, rather than from general, theoretical teaching. Obviously nobody likes having mistakes pointed out but if there is one thing I have particularly enjoyed about my PhD experience, it has been the opportunity to have time and space to really “grow” my thoughts and my writing over time and to be able to treat feedback as the kind of learning experience that I think it is supposed to be.

I have also begun working through the requirements for submitting my thesis. I have had a lot of support from my disability coordinator at Uni to help me locate the relevant information, and we are getting together a plan. For me, this includes having as much concrete information as possible, as soon as possible so that I can picture what the processes of submission and my viva will look like – preferably in a visual format. I have also worked with my learning support worker to make a condensed contents of the guidance for thesis submission so that I know what’s where when I need to find things. This is an important process, as it stops me being overwhelmed by too much information. These are the kind of thing that are the absolute hardest for me, and other parts of the PhD of which I’ve been most afraid throughout. My “survival strategy” is a combination of pragmatism (making sure I have all the relevant information when I need it, and being proactive in making sure I have access to this) and “escapism” (I am able to “lose myself” in the writing, and imagine myself doing it for its own sake – because I have something to say, much the same as my approach to writing this blog). This combination of approaches means that everything gets done that needs to be done, but I also have clear headspace, with anxiety under control, that enables me to get on and write. I will keep you up-to-date with the success (or otherwise) of this approach!

Life in General

There is so much going on in the world, and in my life right now that sometimes there is a risk that my PhD gets lost in it all. These are genuinely worrying times in which to be alive – especially as a disabled person. I feel frightened about being identifiably disabled and about being as “open” and vocal as I am about disability -related aspects of my life. However, I accepted a long time ago that I am incapable of being quiet, and of “playing the game” – that ship has definitely sailed. And therefore, I am relishing doing everything I can with the circumstances I have been given (e.g. check out the Autistic Mutual Aid Fund which is open for contributions and applications).

Also, it is almost impossible to explain how much of a full-time job just being a disabled person is. Before we even get to work, or study, or any other aspect of citizenship, we have to negotiate a daily onslaught of self-advocacy demands. At present, I am attempting to get some specialised mobility equipment that I need while in Lockdown, as my flat is not sufficiently accessible for my needs. The equipment will cost £130, but while I have a supportive physio who is doing her best, she is unclear as to how to obtain the funding required. In the meantime, I have had to use inappropriate equipment which is caused even more shoulder and back pain than I usually experience, and has left me with yet another reminder of just how much my dwarf body does not “fit” in this world. I have then had the humiliating experience of having to explain to the physio the exact nature of my body’s failure to conform. Self-advocacy is supposed to be “empowering”, but when you are up against an oppressive system that requires you to articulate your “need” in relation to its deviance from social norms it does not feel empowering. It feels like embarrassing disgrace. I succeeded in getting the information across to the physio, and now need to wait an unspecified length of time for a decision on whether we will be successful in gaining funding. If not, I will have to spend more of my own money on being as mobile as possible, and holding back the deterioration of my joints as much as I can. Compared with the roughly £10,000 my mobility has cost me so far this is a tiny amount, but my savings have now evaporated, and anyway – it’s the principle!

You may wonder what any of this has to do with a PhD. The answer is “nothing” – and that’s the point! I include this anecdote simply as an example of one of the countless additional tasks that are necessary alongside my PhD, and all the other necessary aspects of life. It may not seem like a big thing, and in fact, compared with other things that are also going on for me personally, and for us globally, it is a small thing. But these things get inside your head. They take up time, they divert your attention, and most of all they leave you wondering how anybody with so many “needs” is ever going to cross that PhD finish-line.

The Bright Side

Things that help me:

  • I have a lot going on, and my attention is easily distracted. I use my ability to hyper- focus to my advantage, and I concentrate entirely on whatever I happen to be doing at that precise moment. This could be working on my thesis, it could be activism, it could be making food, making my bed, taking a bath… any of the things that my day involves. The key thing is, it gets all my attention. Everything else will still be there when I have finished.
  • If I get feedback on any of my writing drafts, I print out the annotated draft and work the amendments into my original. I then save the amended original, but I don’t save the annotated version (the one from my supervisor) with my drafts. It is still available (in a folder in my emails) but it doesn’t get confused with other versions of the draft.
  • Linked to this, I found it easier to separate out the different “themes” of my analysis as the chapter is growing. It makes them much easier to navigate – especially as my visual processing is not always reliable.
  • Speaking of “processing” (and sensory/physical issues to do with working) I use dictation software, and a screen reader to help me produce my work. Dictating not only dramatically reduces the strain, and therefore the pain on my arms, shoulders, and neck, but it enables me to work when pain and fatigue would otherwise make this impossible. The positive impact on my self-esteem is quite amazing – as my life becomes much less a series of failures to navigate the hurdles my body puts in my way – and much more a routine of succeeding. Likewise, a screen reader enables me to listen back to what I have written, and to proof-read, in a way that my brain can hold onto. This means that my work feels much more “controlled” and much less a process of guess-work.
  • I have a whole heap of art projects, and books on the go. I immerse myself in these when not working with all the intensity I devote to anything I do. I am really lucky as it happens, that all my favourite pastimes now necessarily can be done from home. It makes Lockdown much less of a disruption than it must be to more sociable, physically-able people.

This week, I will be carrying on writing up the analysis for the Advance Decision chapter. I will let you know next Sunday how things have gone.


[1] Incidentally, the widespread tendency to insist that any autistic speaking or writing be prefaced with the qualification that “I don’t speak for all autistics” is something with which I am profoundly uncomfortable. This is not because I believe it to be untrue that all autistic people are unique and possessed of their own individual “voice” but because this is so obviously true as to make me suspicious that the insistence on its repeated emphasis serves more than anything to atomise, depoliticise, and ultimately silence autistic “voice” and sabotage attempts at autistic community-building. Autistic people are (at least) as individual, and heterogenous as any other social group. However, our experiences of the social world and its oppressive and exclusionary nature, tend to be boringly, frustratingly repetitive.

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