Anecdotally I know that there are many PhD candidates out there with ASD: Autism spectrum disorder. I have quite a few family members and friends who are not neuro-typical, so I’m uncomfortable with the word ‘disorder’. As my nephew, who was diagnosed as being on the spectrum around age 7, puts it: “you say ASD like it’s a bad thing, when it’s just how I am”.
He’s totally right. ‘Neurotypicals’ are sometimes blind to the unique skills and capabilities that people with ASD have. The world is built around neurotypical ways, which makes studying while being on the spectrum particularly hard. I often get asked about PhD strategies for people with ASD, but, despite experience living and working with people on the spectrum, I am no expert. I was happy when Kim sent in this post and I hope it might encourage others living with ASD to share their experience.
Kim Kemmis has spent the last ten years working full time and pursuing postgraduate study in the Department of History at the University of Sydney. He recently completed his PhD on the life and career of the Australian soprano Marie Collier. His interests include Australian cultural history and the history of sexuality, and is currently writing on opera as a social phenomenon in Australia.
When I started my PhD I knew there would be challenges. For people with Autism Spectrum Disorder (ASD) there’s a huge boulder blocking the road, stopping us from turning intention into action. The way we process information and respond to the world affects how we work and how we connect to others, and for the HDR student there are some particular difficulties.
If research were only sitting in the archive working on documents it would be the best of all possible worlds. I can focus on the detail and feel the brain fire up with new information and connections and ideas. Back in the university study space where the work is more varied I need routine and habit, working at regular times in a quiet, unchanging working place, with minimal environmental noise like air conditioning hum or banging doors, where people don’t constantly walk past your desk or change your computer settings or move your books around. You will know this place by the unicorns roaming outside. Hot-desking is a vicious variation on the hell of open-plan, where even neurotypicals suffer.
Even in optimal conditions my brain won’t do what I want it to. At my worst, is not a matter of diving-in but zeroing-in. The brain takes its own time to engage with the text I’m working on. It doesn’t connect with anything beyond the immediate phrase I’m looking at. I circle around the text, looking for a phrase to spring off the screen or to catch my attention, to coax the brain into comprehension. Every few minutes I have to give the brain a break, preferably by doing something work-related or tuning into my music rather than social media. But usually it’s five minutes on, fifteen off until I get back to where I was. Sometimes I have to drag the brain back, with the to-do list, or by breaking the task down so I can do it in baby steps—any structure I can use to keep moving in the right direction.
On good days form takes care of itself. On bad days syntax and sentence structure fail catastrophically. The brain switches off between phrases and jumps to something else; I grab at what I thought I was writing, but my thinking has moved on and the sentence is a series of non sequiturs. My advanced writing skills need conscious reinforcement, and I can’t see if I’m making sense until I finish the sentence.
But after three-quarters of an hour teasing out the phrases and connections I suddenly get into the zone. Words start flowing out through the fingers and the actual ‘writing’ happens, and I have some sentences, even paragraphs that I can come back to and polish.
Connecting with others is difficult; activities such as class participation and supervision are complicated, and you become estranged from many of the collegial experiences. In my undergraduate days I was criticised for not joining in the discussions, even though I was probably working the hardest of anyone: trying to establish what people what were saying, analyse it, draw conclusions, then find a way of verbalising them, while not being able to read the class dynamics. Now that happens in supervision meetings. I try to work out the nuances (‘What exactly does she mean by subjectivity? Whose? Is that what I call subjectivity or is it something else?’), but there is no time to linger, and I have to hold the idea unresolved and try to pick up cues from the rest of the conversation. After twenty-minutes I run out of stamina, and I can’t express myself verbally. I have lost count of the follow-up emails starting, ‘I tried to say…’ or ‘I should have said…’, or even pretending ‘It’s occurred to me that…’ (NB I didn’t disclose my ASD to my supervisors: in retrospect, a big mistake.)
As a historian I have to interview people. It’s a misconception that people with ASD don’t have empathy. But using that empathy is exhausting, and so are the burdens of initiating and maintaining conversation, and the emails and phone calls required to keep the relationship going.
As a research student you have to make contact with peers and influencers and grow your network. That’s why we have conferences, which can be another circle of hell. You can stick with people you know and connect through their connections. But otherwise it’s cold calling, talking to people while pouring a coffee, using the pre-prepared starters, ‘What are you writing about?’, ‘How many years do you have to go?’, and the one-sentence, thirty-second or three-minute summaries of my research, formulated to avoid the full-immersion experience to which I have been known to subject people; all the while fighting the chaotic and exhausting coffeebreak noise, and the anxiety that as you lurch from sentence to sentence you will lose the thread or not be able to reply.
During papers I try not to be distracted by the rustling of pens scratching on poor quality notepaper, or the suspicion that the weird smells from the seats are possibly organic in origin. I enjoy the para-conference that Twitter provides; distilling the essence of a paper to 280 characters including the conference hashtag helps me engage, and the online interaction complements the more difficult physical socialising.
Presenting isn’t a problem. Once I’m at the lectern the technique kicks in and the anxiety starts to dissipate. But I stink without a script. Every word is prepared, even the impromptu remarks. Questions can be an adventure: remembering not to over-answer, monitoring the questioner’s expression to see if I have to ask ‘Am I answering your question or have I missed the point?’
Now I have finished my PhD I look forward to life as an Early Career Researcher and ask, ‘Does it get easier?’ No. But I have found ways of working that work for me—which is what the PhD is all about, for all of us.
Thanks for sharing your experience Kim! I’m wondering what you think – have you been diagnosed with ASD, or suspect you might have tendencies? What strategies do you have in place to cope with the challenges? Love to hear your ideas in the comments.
My own go to expert on all things thesis with autism is Daveena at the Scholar Studio blog – check it out.
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