Linkspam Friday: September 21

I wish psychologists and therapists didn’t give me the “we will work together to find options but you will have to work to have to implement them” speech. It wasn’t so bad before I had horrific therapeutic experiences, but now, when I struggle to trust medical professionals generally and have little reason to do so, I feel unseen right from the beginning.

That speech has always been the basis of why therapists pushed me towards traumatising-to-me things, like mindfulness meditation. (I will admit that most people won’t have my trauma around mindfulness, but explaining this often didn’t stop psychologists from making me try it for the umpteenth time.) When something wasn’t working for me, I wasn’t working hard enough to implement it. If I couldn’t do something, I wasn’t giving it a fair try. My not trying became the reason describing the failure for all the standard tricks pulled from the therapeutic grab-bag, and that’s now all I hear in that speech. A ready-made excuse that the therapist won’t look past.

I want help with making and sticking to routines, and I’m saying this as someone who has alarms on my iPad, who writes lists, who has tried all the conventional ways to make one work. Like many autistics, I do well with externally-imposed routines, like school, while severely floundering without its supporting structures. (No, the answer isn’t pretend I go to school, because I’ve been trying to do that for over a year!) I don’t know how to make myself not distracted; I don’t know how to stop writing and go to bed like I should. Obnoxiously-loud, jarring thrash metal alarms do not work. Getting up to turn off the iPad several feet away from my desk does not work. Now I’m afraid, because of that cursed speech one session in, that my failure to get a routine going will be my fault. Again. Or that, when I’ve dismissed every single pain-management strategy suggested because they do not work for me, I’ll be branded as difficult. Again.

When I’m constantly trying my hardest against a brain that isn’t and never will be made for an allistic universe, to encourage me to work without recognising my efforts now only makes me feel already a failure. After so many frustrating, bad, terrible and downright traumatic experiences with therapists, such a speech takes my suspicious tendencies and lets them run riot with distrust. After all her reassurances, I already feel like I’m too difficult for her.

If you work in mental health, especially if you’re handling people with more complex diagnoses and disabilities, cut the “you need to work hard to get better” line from your spiel. Start looking instead at the ways we’re already working hard. Because we are. And sometimes it takes all our strength and courage just to get out of bed, and we need the world to see it.

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Linkspam Friday: August 31

I’m still getting used to my new desk arrangement, but I’m finally able to sit at my desk chair for more than half an hour. Excuse me while I sigh, for I’d love to own a body that doesn’t react to new positions with migraines and pain in places that aren’t chronic pain sites. A former psychologist of mine used to argue that I’ve got the advantage of having experienced much of the pain and limitations that come with aging early, as though experience is a consolation prize for not being able to spend my twenties and thirties doing things I should take for granted. In truth, all it does is make me wonder how much worse my life is going to be when I’m sixty if I can’t cope now.

I rather suspect that kind of reframing doesn’t well work on the autistic and anxious.

It breaks me, sometimes, to think on how little I knew about good-for-me psychology and how much difficulty, struggle and trauma it’s taken to even recognise what my needs are. I’ve spent a lifetime trying not to be autistic such that, two years in, I only have an incomplete sense of what doesn’t work. What does work is a grey space of vagary, an eternal question mark. I think that question underpins everything I write–that it’s all one long, rambling conversation between an autistic and their subconscious trying to figure out what’s needed from the world.

Post – My New Desk Arrangement: Here’s a photo of my desk, my new chair height, temporary footstool and test sideways mouse, along with a little rambling on the lack of conversation about office accessibility for tall/short people.

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Survival of Naming

My mother, most of the time, can’t remember my real name.

It doesn’t matter how many times I correct her. She isn’t good at remembering things. The birth name, legal name, dead name, the name that I never speak or use myself, slides from her lips, and she never sees me wince. If I do protest, if I correct her, if I show exasperation or annoyance, she gets angry. I know her reasoning: she has a bad memory. It isn’t fair that I expect her to remember a name that isn’t the name she chose for me, isn’t the name she gave me at birth, isn’t the name ingrained in her understanding of the person I am. It’s too hard, too much, to ask her to think something that isn’t there in her own head.

Sometimes I feel strangled, as an autistic person who knows with painful understanding what it means to forget names. I should be more understanding, shouldn’t I?

But it’s my name. It isn’t even as though I’ve changed it to something wildly different: I’ve just hacked off six letters. Why is that so hard to remember?

Her anger works. It holds me rigid and silent. There’s no point in correcting if she’ll only yell at me for being an ungrateful arsehole who isn’t considerate of her memory struggles. She’s patient with me, isn’t she? So why can’t I be with her?

Here I am, strangled again.

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A Philosophy of Natural Movement, Part 1

This is a long multi-part essay on the experience of being autistic, the process of gaining the label, and the nightmare (especially the last two years, especially especially the last nine months) it’s been being an undiagnosed autistic person being treated for depression, anxiety and chronic pain in the Australian healthcare system.

So, of course, I’m going to start with my ongoing love affair with metal music.

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Wanted: an audience

Before I begin, a tangent.

Last time I got wordy, you may remember, I wrote about geek feminism. Or feminist geekism. Either way.

Three weeks after writing that post, I went to the Sunday pre-release event for Battle for Zendikar (the latest Magic the Gathering release). As I was early, as the shop was quiet, and as I’d almost finished my current creation on the way up, I got out my girly-decorated game box, my play mat … and a sewing box, a Barbie and a Barbie-size skirt I’d made out of an old bandanna that needed a hook fastener to finish. If I can sew on the train and on the platform, heedless of what people think about my stashing half-nude Barbies in my bag, I can sew in a game shop, right?

The first thing I was asked by an arriving player, one who knew I was there to pre-release (it’s a verb): Did you bring any decks with you?

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Little steps, strength in numbers, the tales we tell ourselves

Before I ramble, I’d like to say that I know there are comments awaiting replies. You see, right now, despite the fact my rational brain knows that most people care about me, the thought of looking at comments and facing the possibility that someone might have said something that my brain tells me I can’t cope with is panic-inspiring. (There’s a reason why the words ‘social anxiety’ have been adopted by various professionals working with me … which is kind of absurd, since I get paid to fucking talk to and at people, and have just finished a course that involves, in essence, facilitating people talking to each other, largely by means of talking. But that negative evaluation thing in relation to anything I do online? Man.) Since that panic means I don’t write at all, I’ve made a deal with myself. Right now, I get to write posts, and I get to work my way back to writing posts on a regular basis, and when I’m comfortable with that as a process I can start poking at the next terrifying thing (comments, commenting on other people’s posts). So, yes, I’m deeply sorry that I’m ignoring you, and you’d better believe I feel like shit about it, and I’m grateful for your love, concern, empathy, time, effort and thoughtfulness, but … well, online social interaction is more frightening for me than talking to strangers in a classroom or at a con. I’ve actually done really well to get back to a point where my phone is mostly on and I can mostly reply to text messages!

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A return to the world of monsters

(As a prologue, this post goes out to the people of my ACT – Acceptance and Commitment Therapy – group, for their encouragement when I spoke about my blog and the fears that have kept me from writing. Also to Julia Kyle, who just doesn’t give up on me. Thank you for making me feel as though I can, maybe, re-become my warrior-writer self.)

I wish I didn’t have to begin with this literal title.

I wish it with all my heart.

At first … at first I thought it would be okay, moving back to my parents’ place. It would only be for six months or so; I’ve got a room at a mate’s place, back in my beloved Melbourne, as soon as his sister moves out. It would give me time to recover from how severe my anxiety and depression have gotten, living in a space where I have to worry less about the basic struggles of just looking after myself. It would give me time to worry less about money, at least in theory, and work on finding a second job so I can support myself with fewer stresses. It would only be for six months. Endurable, right?

Oh, the lies we tell ourselves when we have no other option!

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