Personal hero – Dr Jac Den Houting

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Just gonna leave this here because Dr JDH says it so eloquently – everything you think you know about autism is wrong.

https://www.ted.com/talks/jac_den_houting_why_everything_you_know_about_autism_is_wrong

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/)

Abuse circuit breaker – part 2

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I’m going to use an analogy inspired by one of my latest obsessions that helps me immensely with regulating my anxiety – woodworking. While working with a drill, if you are against a difficult bit of wood or if you are working the drill at a slow speed, you can see the drill bit twirl. That specific movement (aside from being hypnotic) has given me an important key to understanding and shifting interpersonal dynamics that don’t serve my commitment to being whole and healthy.

Don’t stop, instead, face away: If you can, imagine that you are a drill bit, or perhaps just yourself, spinning. When you’re standing still, imagine that you are facing your aggressor, your abuser, the person you need to shift your dynamic with. Now, as you begin to spin, and your face turns away, if you’re like me and object permanence is decided by a person’s visible presence in your life, this momentary turning away switches off your trigger circuit. Now, slow down the process so that that spin takes forty minutes for a full spin, which means that you have at least 20 minutes facing away. This has been my baby step towards finding the strength to disconnect or asking that the aggression stop. Twenty minutes is my unique magic amount of time because typically, one’s bodily stress response should let up in that amount of time. You can play with this and discover what your magic period of time needs to be.

The next part of the drill bit exercise is its spin- copying it lets me stim! Whether it’s curling up into a tight ball and rocking or twisting and spinning and allowing myself deep pressure and cutting auditory stimulus, this is one of my keys to regaining control over my own body and mind.

As soon as I am aware of the nature of a destructive relational pattern, if I have the luxury of being able to “do the drill”, I, therefore, earn back some precious internal resources to break the circuit of an unhealthy interpersonal dynamic that I might be caught in.

Let me know if this sounds like senseless drivel, and I’ll see if I can explain better. Till then…

Abuse circuit-breaker – part 1

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Autistic people are often accused of lacking empathy. I’m not going to dignify that shit, but instead point to this recent paper on the ethics of autism. If you don’t wanna read it (but why?!) the summary is: yeah, nah, we have truckloads of that empathy thing y’all bang on about. Now, mix in some other neurodiverse qualities such as not always being able to understand social cues and masking, and you’ve got yourself in a sticky pickle.

I was thinking about this today and wondering how many of these pickles in my past fermented out of my neurodiversity or from my co-dependency (recovering). I couldn’t really separate the threads. Instead I came up with a circuit diagram for my unease that begins in an interpersonal relationship (or sometimes even professional circumstances) when I’m stuck in the cycle of overextending myself and burning out. The lowest common denominator for the development of this cycle is an imbalanced locus of control. In other words, I have been unable to reign in my Aspie mirroring, masking and codependent doormat-ing in some situations and dynamics. So historically, if I have been engaged in a dynamic with someone who has been dismissive, patronising and / or abusive, I have bent myself out of shape till I’ve burned out, melted down and shut down. Spectacularly. So here’s my little circuit diagram.

The process of articulating it helped me separate myself from this automatic process, and the involuntary compulsion of needing to overextend myself despite being uneasy. I’m hoping this resonates and helps anyone else who might be in the same boat. Lemme know what you think?

Now, to progress to breaking the circuit…

PS: I’m stopping with the podcast experiment. Figured I’m not comfortable with the medium of sound. There’s another abandoned project. Meh. Oh, well. Onwards and upwards!

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.

Podcasting “In-difference”!

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Yellow!

I’ve been spending a fair bit of time in traffic and have been wading through podcasts listening for voices that would resonate. I’ve struggled to find voices of autistic people, and have instead run into episodes where either psychologists or service providers of some sort are talking about us, or talking to parents about how to cope etc – same shit, different channel.

So, I decided to start a podcast. I intend to keep the episodes under five minutes each and introduce stories and a range of voices over time. Here are links to episode one and two. Let me know what you think and what you’d like to hear.

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.