Advocacy and burnout

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I’ve been through two cycles of autistic burnout in as many months. These episodes were brought on by a combination of habitual overextending, interconnectedness-of-all-things-thinking (#dirkgentlyreference), lack of sleep, letting the anemia kick in again, and overall, no self-care.

It started with me trying to find supports on campus for research scholars with disabilities. Finding none and me, being me, I started to talk, and write to anyone who would listen and seemed to be the right person to reach out to. This led to me being set up for a meeting with the deputy vice chancellor to present a case for higher degree research students with disabilities. In order to feel prepared, and not be dismissed as an angry brown girl (which I am), I compiled a folder of all relevant research spanning legal perspectives on inclusion, inclusive research outputs, gaps in systemic supports nationally and such. I might have overwhelmed her, and the person who headed the research students peer network who was also at the meeting. They listened without interrupting me for twenty minutes and then, one of them said, “We do have a PhD candidate in a wheelchair who participated in the three minute thesis competition last year”…

Erm, facepalm. Congratulations, you have your token student-with-a-disability.

Anyway, long story short. They listened and said I wasn’t going to change the world in a day. I said thank you for listening, came home and crashed. For two days. Mercifully, my child’s father could have her overnight for at least one of those nights so it helped to not have to care for another human being while I let the exhaustion manifest!

I haven’t quite recovered properly and have toned down the advocacy because I am not sure I’m achieving very much. That said, I’m a few months in and very grateful for my supervisor who has been stellar in helping me not take on additional projects (which I keep wanting to take on because it all seems interesting and connected).

I found this image on an autism women’s advocacy group on Facebook so go check them out if you like this image on autistic burnout:

(Credit: https://m.facebook.com/awnnetwork.org/photos/a.131169816899804/1804285882921514/)

Whatsitsname, this feeling?

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I’ve always had more ideas than I could breathe life into. Research has been no different. I’ve been learning the hard way that bringing ideas to life in academia requires a combination of mentors, networks, their influence, persistence, and one’s ability to wear the necessary cloaks to present and bring your idea to life. Ah, the stench of neo-feudalism. If you’re young-ish, and/ or belong to a minority group with not much wealth, a pedigree academic background, other forms of social capital (accents, dressing, conformance to a host of other socio-economic conformance parameters and markers) and so on, you can brace yourself for many rejections and grab some chocolate and coffee, while digging your heels in. I had a folder on my laptop which used to be called “Rejection badges of horror”, which I’ve recently renamed to “Upon these ruins, I shall build”. So melodramatic!

Point being, I had many ideas around my PhD project, some of which revolved around autism. As I continued to read the most cited literature, however, a growing sense of unease fed my hesitation to continue down the path of attempting to add to the body of work that isn’t created by psychologists around autism. There seem to be two worlds – one, driven by neurodiverse activists and the other, clinicians. I was on the brink of joining the latter camp wearing my neurodiverse-speckled skin. My mandate was to attempt to bridge the gap between the two camps and translate phenomenology examined only by those of us who are neurodiverse, but that which doesn’t find representation within clinical discourse. The idea I was encouraged to pursue was that this translation between worlds might lead to improved diagnosis, recognition and outcomes for autistic people. On the face of it, this sounded noble enough. But I couldn’t shake the sense of mustard yuckiness that sat at the base of my throat at the thought of translating “autistic burnout” into a clinical category separate from depression, but as something that a psychologist could slap onto someone like me, in order to allow access to sick leave, subsidised mental healthcare services or whatever else. Long story short, I decided not to run with anything related to autism. I don’t want to fight that battle. I would rather gain the skills that a researcher needs to be employable inside and outside academia and just do my thing within the mainstream, without making my autism invisible to those around me for their benefit. I’m not sure if I’ve chicken out?

So, here’s to the next three years while I hide under tables, studying and writing about how clinical culture and organisational behaviour within healthcare can be improved. So far, my two supervisors have been nothing but incredibly kind, encouraging and accepting of my strengths and differences. I’m excited and apprehensive about what lies ahead.

Is it worth attempting to shift neurotypical discourse?

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Trigger warning: I reference suicidal ideation

Since my last post, there have been a few things that have transpired that has made me wonder what the balance is between taking care of one’s infant acceptance of one’s neurodiversity, and one’s ethical responsibility to the neurodiverse community.

I wonder about the interaction with The Eye that caused mental harm, and left me feeling utterly isolated. I had one very strong reason to not cave – my daughter. But it really makes me wonder about the numerous students who I’ve encountered over the last couple of years who have chosen anthropology because they believe the discipline values difference. These students have worn various labels, and some have been on precarious paths and at various stages of recovery and reclaiming their place under the sun. I wonder what if a bright 20something year old had been called delusional and incapable simply because the way they experienced the world and “produced” work was different. It leaves me with a paralysing ache in the pit of my stomach, because I know what I would have done if I didn’t have a really strong reason to keep going.

Over the last couple of days, I’ve been working with a community organisation speaking to people about mental health and work. I’ve encountered individuals who have felt so defeated because similar events transpired in their lives. I’ve wondered if it’s worth persisting and attempting to earn a seat at the table in order to attempt to shift knowledge production and policy, if only to a miniscule degree. Or even simply by just being visible and not hiding, not masking. I don’t know. I’d love to hear how others have navigated this dilemma.

Self-doubt, fuck off!

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The marker’s reports for my thesis are in – and I scored a 93%! They told me I would fail. They told me I was delusional. They told me I was misguided. They told me my arguments and methods didn’t make sense. “They” being my department.

I want to be all grown-up and generous spirited, but right now, I’ve just been doing a mental-in-your-face-mooning-dance! Oh, and the silence from the department has been resounding. I’ve been mentally cackling like an unhinged and dangerous witch since I heard. Might as well own it, eh? Take that, you bastards.

Supervisor shopping

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If you’re supervisor shopping as a young researcher, it’s easy to go with brilliance if you’re also autistic and not really great at picking up social cues. So here is what I wish someone had told me before I started:

1. How do they treat others? Do they talk others down? Do they patronise, condescend and bully others? If you are their best bud now, you can be sure you’re just one misdemeanour away from being treated shabbily. People who treat others like dirt will certainly treat you like dirt too. Just give it time. Better still, don’t.

2. Empathy over brilliance. It doesn’t matter if your supervisor is the most brilliant person in your field if they lack the ability to see you and hear you. My supervisor’s eyes would glaze over in 30 seconds after I started talking. Simply because I didn’t emulate his style of communication. Don’t settle for that. The supervisor who took me under her wing to help me see my thesis through was a young research fellow. I didn’t know much about her work before I was assigned to her. She, however, took the time to actually listen to me, and others, when they spoke.

3. Generosity. Is your supervisor generous in pointing you to opportunities that will help further your career and your ideas? The Eye didn’t point me to a single conference or journal or any resources around getting published, even when our relationship was going swimmingly. His response to hearing that I’d published an article around my findings was lukewarm at best. You need someone in your corner, someone who will be your mentor and show you the ropes in an intimidating industry.

Autistic scholars, don’t do this when working on your thesis

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1. Don’t. Underestimate timeframes. Time fucks with my mind. Nearly four decades into life, I still can’t accurately estimate how long I might take on something. Energy, parenting, paid work are only some of the variables that play a role. Build in buffers – 48 hours over what you think you can manage. At least. And let your team know that this is a phased approach to delivery. That you will aim for x, but if you can’t deliver, you still have 48 hours.

2. Don’t. Shut down communication. When you’re unable to achieve what you set out to, let people know. One text – I’m struggling, one email – need another day please, one phone call. It seems impossible in the moment, but when you are five minutes past deadline and you haven’t managed to pull together what you thought you would, let someone know.

3. Don’t. Live in an academic echo chamber. Academics are all kinds of unhealthy. The acceptance of abuse and harassment is so ingrained among younger scholars that your friends in academia won’t necessarily be the allies you thought they would be. Talk to friends outside academia. Tell them you need to vent, ask them if what you said would seem acceptable to them if it happened in their work environment.

4. Don’t. Think less of yourself. I embodied imposter syndrome till I discovered that what I was saying in my work was being echoed by other researchers around the world. I, in fact, did have something significant to contribute. Know that you bring something very valuable in a way only you can.

5. Dont. Dismiss your ebbs and flows. Some days, I’d knock five thousand words in an hour. Some days, ten words through the entire day. I know that people say you need to sit down and write irrespective of what you feel. Sure, if that works for you. I’d encourage you to identify and work with your natural rhythm, and build that into your routine. Work with somebody else to build a routine if you don’t have one. An empathetic supervisor or peer would be a great person to work with to develop this.

6. Don’t. Shy away from medication. Getting medicated for ADHD was one of the best things that has happened to me. It felt like someone switched a light on in a dark room where furniture was strewn. If, like me, you have come to this with an adult diagnosis, you will be unlearning and re learning ways of being in the world. Some tools that are stigmatised can actually save your life.

Part two of my undoing

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The highlights of part one for those who have stumbled upon this post are: I refused to be complicit in my department’s protection of a sexual predator who was teaching speculative garbage in the guise of evolutionary psychology in order to justify his own depraved beliefs and behaviour. Unrelated to this, but central to my story are my adult diagnoses of autism and ADHD. My attempt to stop masking led to the breakdown of my marriage. This was playing out around this same time period as me writing a thesis.

I’m in a field that is predominately occupied and shaped by white men. Academics are discouraged from activism in this country (Australia), which I find surprising because Indian academia is intrinsically shaped by and linked with grassroots activism. Reputation takes precedence over values and performance of competence has a very specific shape and form. I can’t possibly be competent if I present differently to those who have gone before me. So, of course, my ex-supervisor, The Eye, dismissed my sketch of ideas as unworthy of consideration.

He had previously dismissed my diagnosis. He had been travelling and had not made an effort on his part to actively supervise my writing, because of his travelling and teaching commitments overseas. He had failed to manage my work entirely. Unrelated to how I’m supervised, is the fact that I work best when under pressure of a looming deadline. I have done it before, over and over. To him, however, such a working style and the output he saw, translated into deluded idiocy. The reality of my “disability” dawned on me during this period. I hadn’t seen my disability coach at uni for this period, because my mental health plan had run out, and I had other more practical considerations that had built up during the year like accomodation and daily provision for my daughter and I. Neither had I seen my psychologist because of the cost involved – my psychologist had become a luxury I had dispensed with as a result of making choices that led to me leaving my marriage and supporting my daughter and myself on a very modest research stipend.

However, the narrative that was forced upon me was – woman unhinged from marriage breakdown, unable to perform, is incompetent. I was forced to apply for leave without pay and provide documentation to support this narrative that my marriage breakdown had left me incapable of performing. Humiliating, yes. Invalidating, yes. The extension I had asked for in the first place was granted eventually when the university discovered that what had transpired was in fact illegal. I had not been given the supervision I needed, the supports to complete my job, when I had asked for a lengthier extension, I had been told I would not be granted this extension and had been asked to apply for a shorter extension which worked within my supervisor’s travel schedule, but not for me. The university ombudsman on hearing about these details had offered the sage advice: suck it up if you want to continue in academia.

After the meeting with The Eye where things had spectacularly fallen apart, I had gone to see the emergency mental health services at my university. For the first time in a year, I had felt suicidal. It had felt like all the gains I had made in working through my challenges had come undone. A friend told me that The Eye had said the things he did because he cared for me. That if I was feeling suicidal, the problem was probably with me – a deeper problem that simple how The Eye had treated me. “Do you believe you can do this?,” the psychologist had said. “Yes,” I’d replied. “Do it then,” she had reassured me, giving me the one thing I had desperately needed. Belief and confidence in my ability to deliver what I knew I could. My mood slump lasted 48 hours – it had in fact been a result of the meeting – not a deeper problem as I had been forced to claim it was. I had asked The Eye to tone down the vitriol in our communications after a harsh email from him. I didn’t hear back. I realise now that he needed to paint a picture of me as a volatile person, in order to excuse himself from not having performed his responsibilities or duty of care as my supervisor.

I was then assigned a team of supervisors by the department to ensure I would complete my thesis. I reworked the document I had sent him that had ink ited his wrath, and this new team received it with more than passing surprise because it turned out that I had done what I said I would – write up a coherent document about my findings. Sure it needed work but it wasn’t the product of an unhinged mind.

To her credit, my new primary supervisor listened to me when I told her about my diagnoses and what it meant in practical terms. She worked with me to my strengths and even though my working style didn’t change – I still did the last minute marathon – she was my ally in believing that I could do what I said I would. Even though I worked differently from the way she did.

The point of this long ramble is creating a space for myself to present my defence. I have not been given a chance to.

I turned down the offer from the medical department that was waiting for me at the end of this thesis, because The Eye had been one of my referees. Even though that offer is still open to me, and the department has been happy for me to join them if I changed my mind, I don’t want to “play the game” strategically anymore. I was reminded of the anti racism conference where I was listening to an Aboriginal academic talking about how she had no choice but to advocate for her people in her work. I understand what she meant now. I might have the luxury of being able to pass as typical in certain circles of academia. However, after being baptised through fire into the code of silence and bullying that glosses the sarcophagus that is my department’s culture, I’m letting myself out, thank you very much. I had had another offer from a professor who studies autism with autistic people. Many researchers on her team are autistic and she actually walks the talk. I had previously thought that holing myself into a superspecialised research area would be sabotaging my academic career. I’m not so sure any more. Because I’ve asked to be invited to her party again. And she has agreed. If there is one thing I have learned from the events over the last few months, it’s that atypical voices and ways of being in the world need to be seen and heard more. It might not be worth the fight in the end – where I am measured against parameters that disadvantage me from the very start. But time will tell, and I still believe that research is my sweet spot. So here I am trying to figure out a way that I can make it work for me.

Thank you for bearing with my long ramble. I will distill my learnings from these events into a couple of shorter posts that might be relevant to other autistic scholars and mental health sufferers who are trying to carve a space for themselves in academia, so we don’t feel so alone.

Done and dusted, for now

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I’m sorry about the long silence. Lots of shit has gone down. Supervisor breakup. Adhd medication. Thesis submission. Concussion. Moving home. Single-mothering. And trying to slow-the-fuck-down. I intend to write posts that overshare about all these things because I feel like I’m finally in a place where I have processed the events of the months gone by and attributing some vague meaning and form to what transpired and how it has shaped my choices, and me.

So, the most relevant point and possibly the epicentre of the drama: I submitted my thesis. Yay! I will backtrack to six months in order to paint a picture of the things that led to a delayed but successful submission. Prior to submission, I had a nice little offer with the medical faculty waiting for me to finish submission so I could transfer my scholarship to their department and start a role that would allow me to work in what I thought were all my sweet spots – while also being a fabulously strategic move, because the nexus of tech and medical intervention is a where a *lot* of the research funding is at. So how could I go wrong, right? My ex-supervisor was one of my referees. Until… part one of my undoing.

Existential crisis 2.0

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The last time around I felt like this I was single, ten years younger, in love with Russian literature (in translation) and in a country I called my own.

This time around, this sense of gaping meaninglessness has been brought on because over the last three and a half years, I’ve been attempting to fit back into society and reclaim my ideals after having taken a career break for a multitude of personal reasons.

But here I am, so close to the finish line of the mid way point, and I’m burnt out. I can’t seem to muster an intelligent thought, much less articulate it. I feel impotent and defeated when faced by the structural challenges of attempting to force change within a system that is staunchly resistant to it.

I thought I’d been advocating for my students. I was naive enough to think that if I learned to speak the language of the academy well enough, that I could make a dent. Instead, it’s only left me feeling hollow and like I’m cheating myself.

This vocabulary isn’t my own. These paradigms are foreign. The heartache and inequality that I attempt to tame by rationalising and researching, cannot be tamed.

There is no place for me here, because I’ve ripped off my masks and retired them and am refusing to put them on again.

So here I am at another crossroad, at another conference nearly a year after the anti-racism conference that brought on a similar crisis. I am about to abandon a project that I thought would be my purpose for the foreseeable future, because I’m finding the price of admission in these parts is a degree (pun unintended) of inauthenticity.

I’ve lost much this year attempting to rebuild and strip away layers of myself to retain a sense of self I could live with. I’m finding I don’t want to make my peace with what academia is demanding of me. So perhaps it’s time to start packing my bags and start saying my goodbyes.

Resilience

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I hate the word “resilience” with a vengeance. It implies that the responsibility for picking yourself up when you’re dealt a blow is yours and yours alone. Screw the context around the blow, screw the blow itself, but you better work on that resilience so you don’t kill yourself and heaven forbid, someone gets sued in the process.

I’m sorry this post’s a bit dark – it’s been that sort of day. I cycle through hyper focused and productive days and then, there are the days when everything is crumbly. Yet another rejection letter, discovering my bright idea around an interdisciplinary method is not so new after all, and there’s a whole course being taught around it at Stanford, and then, a rabbit hole around whether this gamble with academia is worth it. I love what I’m doing, but it’s depressing reading story after story about the relentless struggle to stay afloat and prove yourself constantly – for decades on end; stories of people more brilliant that yourself ending up homeless and whatnot.

I’m working on writing those paper proposals, stringing together the sketch of my thesis, thinking about plan Bs, being proactive and reaching out to collaborators, putting together proposals for grants and scholarships, and wondering about the point of it all. All I can do is keep trying, I suppose. Like Sisyphus.

“I leave Sisyphus at the foot of the mountain. One always finds one’s burden again. But Sisyphus teaches the higher fidelity that negates the gods and raises rocks. He too concludes that all is well. This universe henceforth without a master seems to him neither sterile nor futile. Each atom of that stone, each mineral flake of that night-filled mountain, in itself, forms a world. The struggle itself toward the heights is enough to fill a man’s heart. One must imagine Sisyphus happy.” – Camus