Doing a PhD with Autism Spectrum Disorder (ASD)

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.

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My own go to expert on all things thesis with autism is Daveena at the Scholar Studio blog – check it out

24 thoughts on “Doing a PhD with Autism Spectrum Disorder (ASD)

  1. Hello Inger,
    You note that you are uncomfortable with the word ‘disorder’. I agree. ‘Condition’ is an alternative. But as the mother of an extremely intelligent kid on the spectrum, I’m uncomfortable with your choice of the word ‘afflicted’. This to me is a much more jarring word than disorder. As you point out, language matters. Thank you for sharing Kim’s experience.

  2. I’m an autistic PhD student – diagnosed mid PhD. For me, the most important useful thing was reading the blogs and books of other adults on the spectrum. Thinking of autism as an identity and culture and focussing on self-advocacy was a much more empowering approach to what I encountered from psychologists and other support groups run by NTs.

    I recommend http://autisticadvocacy.org/ as a good place to start. And I agree with Katya and your nephew that ‘person afflicted with autism spectrum disorder’ is a poor choice of words. Here’s a good blog from that site on the debate between ‘autistic’ and ‘person with autism’: http://autisticadvocacy.org/about-asan/identity-first-language/

  3. Thanks for sharing your experiences.

    I can empathise to a point; I have ADHD. It’s been quite the roller coaster attempting to finish my PhD. I know what it’s like to hear annoying sounds (argh, why do people insist on chewing gum in lectures, clicking biros or the B****y leaf blowers outside every day?), but luckily for me, I can take medication which allows my brain to silence much of the previous nuisance factor.

    I was never diagnosed until my second year of the PhD, throughout school and my undergraduate degrees I was always told I was lazy, strange and stupid. Those comments really do tend to impact on your opinion of yourself. Even though I have published a few articles in my field and have nearly wrapped it up, I feel like a bit of an imposter.

    But onwards and upwards- academia, at least in my neck of the woods, is full of people who approach life in different ways. I don’t entirely feel out of place anymore. Like Kim, you have to find ways and people that can help you adapt enough to succeed.

    • I’m glad you found your way through. You’re right, you have to find your own way, and the right people. Thanks.

  4. Thank you. I feel so much less alone reading this post. The thing about reading… YES. And using up all my energy to interact with others… YES!
    As someone who presents fairly neuro-typically, it can be so hard to explain what is going on under the surface. Everyone should read this!

    • Thanks Tegan. It’s frustrating and tiring isn’t it! We’re like swans, sailing majestically along while paddling madly under the surface. I like to say that I have a Daffy Duck brain in a Bugs Bunny body (an analogy completely lost on Disney fans).

  5. Firstly Kim what a beautifully written post. Your words resonate with me in so many ways although I suffer from a different disorder with its own set of extreme difficulties. Try explaining to other people how your condition impacts your life and all you get are blank stares, disrespectful comments and dare I say it, sheer stupidity. Phd students with a disability do it tough and no one has any conception of the layer of complexity it adds to an already demanding task. You are so amazing to have reached the end and completed your thesis. In my mind that makes you really special. Well done!! You are an inspiration to others.

    • Thank you Helen, you’re really kind to say that. I don’t think there’s anything special about me, it’s just that I have developed a lot of discipline, I had supportive people around me (who did not all know about my issues), and I really enjoyed my research topic. And I’m pretty stubborn. I think developing all of those is part of the PhD journey, we just have to do it harder.

      • Kim you have such a beautiful writing style where you capture so clearly in words that are so expressive how you deal with life. You have such a deep understanding of how your condition impacts your life and your ability to convey its effects on you provides others with the depth of difficulties you are experiencing. As I said your ability to convey in an almost “poetic” expressive clarity how it feels to be you takes amazing insight and I have read your post several times because I really want to relate to your experience. Once again, kudos for completing a daunting task under extremely arduous circumstances.

  6. I know a student who is only in high school and hasn’t been diagnosed with Autism but struggles so much with many of the same things Kim does. She feels angry and awful when others find her difficult or upsetting. It’s good to see that he’s able to work through it.

    • One of the things that annoyed me when I was first diagnosed was the way these issues were always presented as being my fault. If I had difficulty empathising with neurotypicals or presenting myself as a neurotypical, this was used as evidence that I had a disorder. However when neurotypicals fail to understand me or act in a way that makes it really difficult for my brain to function, that doesn’t reflect poorly on them, because I have a disorder that ‘normal’ people can’t be expected to understand!

      The way I see it now, people on the spectrum need advanced empathy and self advocacy skills rather than remedial help. As someone in a neurological minority, you’re constantly going to have to interact with people who think completely differently for you. For these interactions to go well, you’re going to have to understand where they’re coming from and help them understand where you’re coming from (as well as dealing with whatever prejudices and incorrect assumptions they have). This is difficult for anyone, hence the need for advanced skills.

      It’s also reassuring to know that as you get older, you’re more likely to meet other people with these advanced empathy skills – they seem to develop late and you have more opportunities to meet people based on similar interests after high school.

      • I had a boss who, after I had disclosed to her, used my condition to gaslight me. Not a pleasant experience, and it stopped me from sharing it with others. Realising that it was not a failure of character helped me move forward. I agree with you that developing skills is preferable to remedial help, but it depends on the degree of skills you have. It’s taken me over 30 years of work to get where I am.

  7. Pingback: Growth Mindset, Neuroscience, Mr. Rogers and more in this weeks news roundup! - Psych Learning Curve

  8. Thanks for this post! I’m an Autistic PhD student and Postdoc concurrently – I’ve been lucky enough to start my Postdoc a few months prior to thesis submission. My thesis and Postdoc are both in the field of autism, so being Autistic has in many ways been an advantage for me – what my colleagues understand in theory, I understand In practice because I live it every day. I have found, though – unsurprisingly, perhaps – that the academic world is all about who you know, not what you know. I’m very lucky that my networks already include a lot of the “key players” in my field, because playing the networking game while Autistic is almost impossible.
    Like many Autistics, I also struggle with mental illness. I have depression and anxiety, and spent six weeks in a psychiatric hospital at the start of the year (while doing my PhD full-time and negotiating my Postdoc role). I’d love to see more on the blog about PhD-ing while mentally ill!

  9. I’m a PhD student in a branch of medical science and I am autistic. It is definitely challenging. I love my research area but some aspects (particularly seeking funding from grants etc) is very daunting. It’s hard to understand all the different expectations. I have paid the cost of taking things too literally in the past.

    • Rob, I found applying for grants absolutely confounding – not only the paperwork, but having to read between the lines. My university offers assistance with grant applications by students, and I got through it by grabbing a couple of friends in my cohort and asking, ‘What do you think they mean by this?’

      • You say ‘got through it’ as if asking other people for advice is somehow a sign of weakness. I’d say it’s an entirely sensible thing for any PhD student to do.

        While I was doing my PhD, I was very fortunate to coordinate a program for undergraduate student mentors. As part of this, I ran the group interviews for new mentors and we would always have a current student mentor on the panel.

        I’d usually chat to the mentor panel member about how they found it and pretty much all of them commented that when they were a student they had no idea what they were looking for or why they were chosen. However, being on the panel, they were surprised at how easy it would to pick up on things that would make people more or less suited to being a mentor in the program.

        This seems to be a general principle that can be extended to grant & job applications, writing papers, giving talks – you learn so much about what is expected from reviewing other peoples’. I would now never willingly submit one of these applications without seeking advice from people who have reviewed them or attending workshops/consultations offered by my university. Of course, there will be some autism specific difficulties, such as taking things too literally or going into too much detail, but overall I think this approach is useful for all PhD students.

        I like to think of this as one of the ‘gifts of autism’. I’ve noticed that some neurotypicals can get to be adults and still assume that everyone thinks like them, that they always know what other people mean and that if someone approaches a situation differently, this person doesn’t like them or is deliberately out to get them. These assumptions seem to cause them all sorts of anxieties and lead to all sorts of unnecessary arguments with the people around them.

        On the other hand, I don’t think it’s possible to be autistic and not realise that most other people seem to have very different brains. This has forced me to be accepting of diversity (if I only made friend with people who thought like me, I’d be pretty lonely) and realise I need to seek help, advice and/or clarification (which often allows me to perform at a higher level than neurotypicals who don’t do these things).

        • I don’t think asking for help is a sign of weakness – on the contrary, to know you need help is a strength. I said ‘got through it’ because even with the help I got it was a tedious process. I like your last point, that we tend to recognise that people have different brains and are more accepting. You’re right, it is a gift.

  10. Congratulations Jac! Quite an achievement. I’m impressed by the way you made your circumstances work for you. You no doubt have already worked this out, but keep an eye on the self-care. Under the pressure of getting my thesis finished, some family issues and other external factors, I let things slip in the last six months of my candidature, and had a very tough time. Make sure you look after yourself.

  11. I want to cry.

    I was diagnosed (ASD) midway through my PhD. Trying to get my primary supervisor to understand my communication needs was a nightmare – eventually the department stepped in and removed me from her care. I am under new supervision with someone who is much more empathetic and easy to communicate with. Still, the bad brain days are still horrible. You speak to so much of my experience. Thank you.

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