everyone should know - RED INSTEAD 15

everyone should know, when something is described as a "life long developmental condition" that means people don't grow out of that condition. there will be 5 year olds with that condition. there will be 35 year olds with that condition. there will be 85 year olds with that condition. this is important.

routine - RED INSTEAD14

I don't need routines, except when I do.

I didn't think I needed routine, because doing things outside an arbitrary, prescribed order causes me no anxiety. I'm not Sheldon Cooper, insisting that Tuesday night is laundry night. I'm more of an "erm, what day is it today?" person.

and that's why I need routine. if Tuesday night was laundry night, but I have to do something else on a given Tuesday, I could do laundry on Monday or Wednesday. if I don't have a planned laundry time, undergarment emergency day becomes laundry day. if I'm busy on a given Undergarment Emergency Day, I can't do it the day before due to lack of time machine, and I can't do it the day after because it's Undergarment Emergency Day. I become Sheldon and I hate it.

routines are great, because they take the brain out of the equation. an established routine means almost mindlessly following the steps rather than having to remember all the things I need to do. the problem comes with establishing the routines in the first place.

I've felt out of step recently. I love my new job, but the hours feel really chaotic. I work evenings & overnight when my metamour works. they follow a 5 week rota, with 1 "relief week" which could be literally anything and they can't tell me until they find out a week before. I sort of have 2 homes, which need different routines, and struggle to switch between home-Lambeth mode and home-Croydon mode, so days are lost pissing about online in the executive function equivalent of jet lag. the result is I feel like I have no time for projects I want to do. hmm.

now I have something to think about, at least.

family - RED INSTEAD 13

well, that's a complicated prompt.

they love me, but the geek social fallacies run rampant.

I love them, but they drive me mad.

favourite charity - RED INSTEAD 12

I can't think of any that operate in my country and are actually decent.

ASAN is doing great work, but not here.

NAS... run support groups for parents and not much else...?

Autscape is autistic lead, but also a clique that repeats some of the dysfunction of the worst parent-lead groups.

so I don't have a favourite.

stims - RED INSTEAD 11

stim on.

this is like coming out, in that it's often the most visible sign of my neurology. therefore I owe it to myself to stim on whenever it's safe to do so.

fortunately, it's almost always safe for me to stim. my job is informal enough that I could probably do it in my pajamas. my friends accept all of me. my girlfriend thinks it's cute.

I'm very lucky, but it should be that way for everyone.

sensory life - RED INSTEAD 10

I've written about sensory stuff on here before, when trying to make sense of the issues and come up with some practical solutions.

I'm not sure re-hashing my specific sensory profile here is productive. I seek some, I avoid some, I get confused when stress makes me avoid something I usually seek or vica virca.

the most infuriating thing is that I had to make sense of it on my own. if I attempt to crowd source answers, I get a whole lot of "if your child does X, Y might help". fine, parents need help too, but:

- every time I read the words "your child", it's a reminder that people like me don't matter to the experts.

- many issues that I have as an adult are ignored. "your child" might have issues with food & clothing, but they probably don't have to cook for themselves or go to job interviews. there probably are ways to make formal clothing more comfortable, but I can't google them because everything is so kid-focused so I have to work everything out for myself.

favourite autistic owned business - RED INSTEAD 9

I...erm...I have no idea.

favourite autistic blog - RED INSTEAD 8

Radical Neurodivergence Speaking. hands down.

autistic community? - RED INSTEAD 7

just over a year ago, I'd have said I was still looking for my place in the autistic community.

there are fabulous bloggers who give me glimpses of what it could be. who's writing feels like coming home. who want us to do better.

then there is every group I've found. they fall into one of 2 types, the information hub and the social group. information hubs are fine and useful, but they're not community. social groups have positive moments, but regularly descend into self pity, toxic masculinity or ablesm.

I will never find a home in an autistic space that isn't also feminist and actively queer friendly. it's so easy to build spaces that support creepy behaviour by autistic men, because maybe he doesn't know any better. as a woman who uses public transport, for my own safety I need to assume strange men who keep talking to me when I'm alone and clearly uncomfortable are dangerous. too many groups protect the feelings of an accidental creep over my feelings of safety AND his opportunity to learn not to be accidentally creepy.

after a particularly disastrous attempt to find community (where an event organiser accused me of being ablest because I complained about being harassed by one of the regulars), I realised something. I have my autistic community. it's called BiCon. it's a real, meat space community full of autistics. it's not meant to be, but because of all their work on accessibility over the years (and the relatively high number of autistics who are queer) a disproportionate number of regular attendees are autistic. we can have the big, "me too!" conversations, stim openly and socialise on our own terms. we can come home.

I love you, BiCon.

supports and appreciation - RED INSTEAD 6

so, this prompt is about the supportive people in my life.

support doesn't always look like you'd expect. my parents support me, but it doesn't feel like it. my boss supports me, but it doesn't look like it.

my parents do almost everything for me, and I am ashamed of that. I'm ashamed that I live with them, and we've fallen into the pattern where mum does (almost) all of the cooking and laundry. I'm happy to do those things, provided I can make them work for my wonky brain. the problem is, any slight modification to mum's non-system will be rejected. I suggest a "Tuesday is laundry day" type system, because "undergarment emergency day is laundry day" doesn't work for family laundry (cos I'm not going to monitor dad's supply of clean pants. just no.) and she says that's "too complicated". it's literally less "complicated" than keeping track of everyone's pants, wtf?

my boss can't do everything for me. she's disabled and spends most of her time in bed. my job is to cook dinner for us, help her get ready to go to sleep, and stay at her house overnight in case of emergency (and miscellaneous other things). what she does do to support me is prompt me to start cooking so we eat dinner at a sensible time. I can do all the steps needed to produce reasonably tasty and nutritious meals, but left to my own devices I wouldn't manage to actually do that reliably.

if it was left up to me, I would regularly forget to eat until I felt dizzy, but I don't because (at my parent's) food is provided for me and (at work) I have someone asking "what's for dinner?". both are support for this particular executive functioning issue. I'm not fully independent in either situation, but at work I feel closer to it because at least I'm an active member of our team, doing the bits I can do.

so, maybe that's the difference between support that feels supportive and support that breeds resentment. I don't want servants, I need team mates.

special interests - RED INSTEAD 5

ugh. why? "special" interests.

the term is strangely loaded.

I'm supposed to have that one true obsession. be the expert on that thing. whichever side of the great tragedy/neurodiversity divide, the "special interest" is the cornerstone of autistic culture.

what is my Special interest?

well, this post could go 2 ways.

as a kid, I had to learn the hard way that friends shouldn't be Special Interests. I don't want to write about that, but maybe I should? maybe I will, some day.

the other thing I can think of is my crafting. it's not the typical, obsessively-memorising-facts way to have a Special Interest, but I am a sort-of expert in my preferred media. I know a lot of knitting terminology. I can freeform crochet with a hook fine enough to pass through my ear piercing. I know how to shift colour in 3 dimensions, and build forms that amaze my fellow polymer clay artists. when I grow up, I want to look like Iris Apfel except with all the bright things made by me (and some people in the community have worked this out, and said I look like a younger version of her at workshops).

betting relationships on acceptance - RED INSTEAD 4

it's telling that our community uses "coming out" as a term. as a queer autistic woman, queer coming-outs (and conversations about them) have helped immensely with neurodivergent coming-outs. I was diagnosed young, so neurodivergent coming-outs began long before I was able to understand the implications. when speaking to someone I'm not out to, they have a certain set of expectations about me. unfortunately, the set of expectations that is applied to heterosexual and neurotypical people is a lot more respectful than the set of expectations applied to someone like me. I have a femme gender presentation, and am capable of masking my neurology, so am read as straight & neurotypical unless they know better. on the other hand, I can't challenge those expectations from a closet, and there is a personal cost to maintaining their illusion...

...so, it's a delicate balancing act. how likely are they to respect me afterwards? do they have authority over me? how much time do I expect to spend with them? a new friend my own age is much lower risk than an elderly relative. a course mate is lower risk than a tutor. coming out as queer is lower risk than neurodivergent...

it's usually worth the risk for me.

I've come out nervously, after weeks of deliberation.

I've come out without a moment's consideration.

I've been outed without consent.

I've asked my parents to out me to extended family.

I've come out at various times as a lesbian, bisexual, asexual, autistic & dyspraxic, and one of those things is not like the others. guess which one?

yep. lesbian. let me explain.

"coming out" isn't the one-off coming of age event for queer youth that middle-aged straight people think it is. when you come out as a lesbian, you will need to (decide if you want to) come out again when you meet new people. each time, you're gambling. you want to be closer, so you bet the current relationship on this person's acceptance. or maybe you decide it's not worth it right now. it's a lifelong process.

all the other identities I've experienced coming out? they're also lifelong. the difference is that you'll have to keep coming out to the same people. got a new partner? Que a second/third/8th coming out as BISEXUAL to your parents because they're a different gender from your ex. it doesn't matter how often you explain sensory issues or executive functioning, or ask someone not to use offensive language about your neurology, most people don't believe you. or don't care. or both. I mostly don't bother with coming out as asexual at all any more...

...it's infuriating. but it's still better than not trying. mostly.

diagnosis story - RED INSTEAD 3

I don't like this prompt. my diagnosis story is a terrible mix of boring and shitty. the facts are thus:

- at the age of 7, I was diagnosed as dyspraxic
- within about 2 weeks, mum found a gym club for "special" kids just over half an hour's drive from our house
- the gym met twice a week. mum saw it was likely to be helpful, and brought us to every meeting no matter what.
- there were 2 sessions per evening. sessions were an hour long, but families could sign up to a double session if they wanted. well, it's hardly worth going for a single session, right? with a single session, we'd spend as much time travelling as we spent there.
- there were venue issues. the group started meeting 3 times a week.
- at some point, the group started running a swimming club.

(so, in case anyone is struggling to keep track, that's 3 hours [30 min drive, 2 hour double session, 30 minute drive home] 3 nights a week after school, plus 1 1/2 hours [30 min drive, 30 min swim, 30 min drive home] on a 4th night, for a total of 10 1/2 hours of activities outside school that I couldn't opt out of, whatever happened. I also went to brownies.)

- some friendship issues happened in year 6 that I handled extremely badly. because of the stress of my schedule, this made me suicidal.
- I was sent to a psychiatric nurse.
- the nurse said some stuff about bottles and anger that I pretended to understand.
- I didn't understand. because I'd never seen anyone show anger in a way that I would be allowed to, so my options were pretend to be fine or be punished.
- her colleague ran some tests
- ages afterwards, mum told me the reason I was angry was because I had something a bit like mild autism, but it was OK because I only just met the diagnostic criteria.
- I managed to say 2 things. first, that the diagnosis didn't change me. I'd had this thing forever, it was just a diagnosis. second, that I didn't want my younger brother to know.
- mum assumed the first thing meant I was happy about the diagnosis, and completely ignored the second.

years later, my brother yelled that there was something wrong with my brain during a fight. I assumed he meant dyspraxia, so laughed & said he did too. no. he didn't mean dyspraxia.

mum still thinks telling him was justified because [word salad about good intentions]. whenever I remember that, I'm still angry.

philosophical confusion, RED INSTEAD part 2.

so, what do I love about being autistic?

what is being autistic?

because that's what it comes down to, right? for the question to have meaning, I have to know what it means to be autistic. to know what it means to be autistic, I need to be able to separate "me, Jude" from "Jude's autism". if I'm not separable, the whole question twists. how does being me affect me, and how much of that do I love?

I'm not separable.

so, which ways that being me affects me do I love? well...

...thinking in 3 dimensions? that seems like a "me" thing. at polymer clay events, I can see my planned pieces so much more clearly than other people seem to see theirs. I get an idea, I run some brain "simulations" for making that idea, iron out some of the issues, then try it. it doesn't always work out, but it's usually close. not everyone seems to run the brain simulations.

RED INSTEAD!

scraping in at just after midnight, I've decided too late to blog every day in April for autism acceptance. I'm following a meme that had 30 days of prompts. the prompts are....

- intro
- what I love about being autistic
- my diagnosis story
- coming out reactions
- special interests
- supports and appriciation
- autistic comunity
- favourite autistic blog
- favourite autistic-owned business
- sensory life
- stims
- favourite charity
- family
- routine
- everyone should know
- work/school
- accomodations
- someday
- I hate it when
- communication
- one thing other people don't understand
- dispel a myth
- can't live without
- political issues
- symbols
- favourite autism book
- identity language
- dealing with meltdowns
- famous autistics
- acceptance means

...we'll see how long this lasts.

(the meme also had hashtags. I am not brave enough to add those hashtags. I expect to write stuff that will anger the Autism Moms(tm). I expect to write stuff that will anger autistics, especially autistic men. I am choosing not to engage with that anger)