Tag Archives: actuallyautistic

Linkspam Friday: October 19

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Last week, I had four medical appointments at the end of the week and nowhere near the organisational skills required to get a post organised before then–a feat not helped by a dire lack of content to post about.

This week, I still don’t have a lot of @aroworlds content. I’ve been working on the long-awaited post collecting allosexual aromantic media and hammering out a last-minute first draft for a vaguely-Halloween-ish short story about a necromancer’s summoning her outspoken great-aunt’s ghost to talk about her struggles with cute girls and romantic attraction. It results in a whole horde of local ghosts coming out as various shades of aro-spec and a terrible overuse of the word “bosom”. I would have appreciated the idea coming to mind sooner than Tuesday night, but, on the positive side, I have a complete 7k first draft written in three days despite more pain than I like (because I am not recovered from Kit March, of course). I think that’s the fastest I’ve ever, without stopping, written a complete story like that; more often, I write, get distracted by something else in the middle and finish the story days, weeks or months later.

I want to publish it properly, because it works wonderfully as a prequel for Love is the Reckoning, but I’ll post it here sometime before Halloween regardless of its polishing. I think having a friend, the fabulous @crimsonsquare, encourage me on its progress has helped me be able to sit and work to get it done. It’s easier to write when I feel like someone not me is interested in the story…

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Linkspam Friday: September 28

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This is one of those weeks that hasn’t been all that remarkable, beyond the worst migraine of my life, to the point that I was considering discussing the terror that strikes the autistic-inertia of my heart every time I open up my dashboard and see WordPress cheerfully promoting the Gutenburg editor. (I still use the .org layout because it’s quicker to load than the current “improved” editor, which never seemed in any way improved to me.) In some ways I feel change doesn’t bother me too much, at least in the sense of someone asking me to go somewhere without little preparation or offering up an unexpected activity; I can handle the disruption of someone coming in and upending my plan for the day. When people ask me about change, that’s the sort of thing that comes to mind. Of course I can handle it … can’t I?

Thinking on any change to WordPress has my toes clenching. (Tumblr is a disaster of constant changes I don’t like; the new coloured text ability is just awful, partly from the glare of the green against a backlit screen and mostly because I’m not accustomed to seeing coloured text. Thank all gods for XKit.) Changes to foods I like are a nightmare of why did they do that made worse by the narrow selection of foods I do like and the horror of trying new ones. Then when I consider the nightmare in going somewhere new and how many panic attacks I had last week over a new therapist, I realise that yes, I do not handle change. Not to mention that all the worst mental health spirals I have suffered took place against the context of change for which I wasn’t prepared for or supported in…

In many ways, I don’t understand it myself. I like learning new things and I like experimenting with design: part of the reason I find Adobe CS enjoyable is the wealth of discovery! I love trying out new crafts I saw online. It seems as though these things should be similar, change and learning, but they’re not, and I don’t know why I like trying new things in a complex program while I fall apart at the thought of having to try a new brand of microwave rice.

All this has made me realise that my goal in Kit March is to get both Darius and Tes comfortable in a new place and circumstance: to showcase the growth of a sense of stability after a change neither can quite handle, and then (perhaps not metaphorically) burn the house down. I have no plan to end the story there, mind, but I do plan to disrupt what looks like a happy mid-point.

Lastly, my severe anxiety has left me struggling with a few ordinary things like checking my PayPal account. This is an extremely belated expression of gratitude for this reason, but I do want to thank the people who have been so kind as to buy me a ko-fi. Thank you, so very much, for your support: it means the absolute world to me!

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Linkspam Friday: September 21

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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: September 14

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In the last fortnight, I’ve written twenty-eight thousand words on Birds of a Feather. It isn’t the reason why I didn’t put a post up last week–medical appointments and my birthday were the reason–but it is the reason why I didn’t work on the post earlier in the week, knowing that I had things going on which would likely stop me from posting. A complete 40k first draft, though, is worth it to me, and the time spent writing meant I didn’t have enough links for last week’s post anyway, so…

In personal news, I am yearning for the chance to have a proper shower. I’ve got stitches right where my thigh and hip meet, which is proving an inconvenient spot for conventional and commercial-but-affordable ways of sealing a wound against water. They should be coming out tomorrow and I’m praying that the wound will be okay to risk getting slightly damp after that. Showering as quickly as possible with my leg poking out is awkward, and not washing my hair every day (to try and limit showering time) is driving me to distraction. I’m sure this will sound quite privileged, but small changes like the amount of oils in my hair bother me. I can feel the oils left by someone else’s hands on my Tangle after they’ve touched it, so I can definitely feel two days’ worth of oil in my hair. Since short hair is a stim toy attached to my body for stimming convenience and I’m always running my hands through it, I badly want it back to its usual daily-washed state.

On the positive side, I have a new bout of lived experience to fuel a few fictional characters. Not that it was necessary, but I suppose there’s something to be said for fresh realism. I’ll now have Tes pacing back and forth because the stitches across hir palm won’t stop itching…

Photo – My Gaming Gear and Unicorn Squishies: In which I show off my gaming box, my Meren of Clan Nel Toth playmat and two unicorn squishies, still trapped in their cling-wrap packaging, watching over proceedings. I started going for viewed-as-feminine colours and decorations for my gaming things as a protest, because I had girls come into my old job afraid to pick out pink card sleeves from fear they’ll be mocked or harassed. Being misgendered because of it wasn’t comfortable, but I do feel there was worth in showing that gaming accessories don’t have to be masculine-coded.

Teaser Post – The Performance Magician: In which I post a scene from the first draft of the aforementioned work. Read this if you want spoilers for Amelia’s feline naming philosophy, more of March’s passive-aggressive renaming of elfish people and creatures, why Darius named his pony after the swordseller in Certain Eldritch Artefacts and hints of how Efe is going to drive Darius into throwing a dictionary at the wall. I will confess that Darius’s irritation at words being used the wrong way is mine, and I am also hypocritical enough to not mind when I do it…

Photo – My Redecorated Notebooks: I was given some rainbow washi tape for my birthday, so I covered a notebook and three scratch pads in stripes of bright washi tape. It was nice having an afternoon to be crafty in a way that isn’t writing.

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Linkspam Friday: August 31

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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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Linkspam Friday: August 17

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This week, for various reasons, my anxiety has edged far too close to intolerable. Much of my response to it involves my trying to minimise the outward appearance of said anxiety, which saves me from judgement but denies me the release of expressing it. I’m falling apart so terrifically inside this membrane of skin while Western society is structured in such a way that I have limited ability to safely voice this experience outside it. Not only do I have to survive the pain of a brain that is disabling me, I have to survive both the lack of support this disability gets and that lack making it difficult to try and talk even to those few willing to listen.

In a way the ordinariness of anxiety, as something so common a significant percentage of people suffer it at least at one time, makes it difficult for those of us with severe forms (especially severe forms complicated by other diagnoses, like autism) to be acknowledged and treated as such. In therapy, I’m more often handed things that work for people with mild to moderate anxiety, with the expectation that’s all that’s needed to help me. The psychologists think I’m not trying hard enough, while I don’t feel seen or understood. I’m going back to a normal psychology program to be treated for my current peak of anxiety (this way I don’t have to ring or email anyone, just show up) but I am anxious (oh hear the bitter laughter) that this is going to be another disaster with another psychologist who treats my anxiety as moderate and ignores the autism.

I’ve had a good psychologist in the mix, and I like my current psychiatrist a lot, but that hasn’t erased my trauma. In many ways, it makes me feel that my trauma response is invalid or absurd. I know good medical professionals exist, so why do I panic so much about seeing them? Why can’t I trust that a new one will also be good? But I do and I can’t. New medical professionals terrify me, especially new mental health medical professionals.

I’m thinking about pausing my current projects to work on Ein’s next story (the sequel to The King of Gears and Bone). It might be more distressing than is good for me: that story cut far too close to the bone to write even at a time when I felt (more) stable. It might also give me a way of talking through my character at a time when I am so silenced. I’m feeling the pitch of anxiety, distrust and isolation, so if I must endure this again, perhaps I should make what use of it I can by channelling it into my character.

It’s not as though I’m accomplishing anything off my to-do-list right now, so if writing that out gives me somewhere to go with it all, maybe that won’t be a bad thing.

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Linkspam Friday: August 10

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I’m trying to get used to a new keyboard/desk arrangement on the advice from the OT at the pain clinic, which is making typing difficult for me. Even the slightest of changes in posture and arrangement throw me off to a ridiculous degree in terms of body memory, pain and not triggering migraines–I will get used to it, probably, but the adjustment period is difficult, more disabling for me than my pain. I’ve now also got to hunt down an affordable sideways mouse to see if that helps me use it more comfortably.

On the positive side, I do keep my shoulders and neck in the correct position, and I’ve been using my iPad as well as it is possible to use a tablet in terms of propping it on pillows and my bag. His opinion is more that I shouldn’t be trying to use it with the tucked-in-no-arms-out-everywhere position wielded by everyone else … but it’d be so nice to be able to comfortably use my devices on the train without needing to occupy two seats. I still don’t know how other folks do this. Not being autistic? Souls sold to demons? Who knows, because I don’t.

Apparently I type fast, but I talk, walk and read fast, too, so this should be a surprise to nobody. I’ve never operated at normal human speed.

Post: “Heartfelt”, The Good Doctor and Autistic Character Arc – In which I prove that I am still not over this ableist disaster of an episode by complaining about it and discussing the need to centre our need for representation instead on the works of autistic creatives. I admit that I have a few horses in this race, but I am so tired of seeing The Good Doctor praised for including a character who moves like me when the story is still so focused on seeing Shaun become more allistic. One day I’ll have the spoons to write a long-arse essay on why I am not a fan.

Post: Trans Characters Versus Trans Fiction – In which I rant about the phenomenon of seeing any book with a trans side character (by a cis author) recommended (by cis reviewers) as trans fiction … while trans authors of trans fiction with trans narrating protagonists struggle to get the same recommendations and audience. I have horses in this race as well to say the least, but am I tried of having well-meaning folks recommend me a story as important trans rep only to discover that the character is a side character.

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