Autism

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A general Autism discussion and support group on the fediverse.

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founded 11 months ago
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Hello, i have created this community as a substitute to the unmorerated lemmy.world community. that is seemingly abandoned. I hope the discussions about autism can be had here. If you have any sugestions please write them below this post!

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I pick my gums. I usually bite a fingernail off and use it to pick with. I enjoy the sensation of pain from having a sharp thing in between my gums and my teeth immensely (not sexual, but a sensation that I cannot really compare to anything else)

I have tried all sorts of solutions to try to stop this, and I’m not really wanting them right now. I have managed to stop biting my nails for a time, but this will instead be replaced with grinding my teeth/picking without biting the nail off first/flossing or tooth picking to the point of bleeding.

What I would really like is harm reduction here. I don’t know what I would say to a dentist or doctor. I will wash my hands before biting my nails to at least make an effort as far as bacteria and infections. I imagine this will lead to long term damage down the road/already, but maybe there are things I can do that will at least fuck me up less in the long run.

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I feel bad about posting this because for the most part I only use this account when I'm too beat down by the reality of the last 9 years of my life to cope, so then I log on and vent and then run away and don't respond to the helpful comments I get for months because processing what people say in reply is another Task on the Pile of Tasks, many of which are actively on fire, needed to be done years ago, both, etc.

I'll try to stay engaged this time, I clearly need space to communicate about this shit and people to communicate with more than my therapist (half my age bless her heart, but she listens and has ADHD herself) and my one friend with more profound ASD than me who can really only process 2 to 5 texts a day. Who is super loyal and a big help btw.

I will try to make this as concise as I can but it's gonna be long as fuck. I flamed out of my "career" in software over a decade ago when my biofamily imploded, and lost my home about a decade ago. Since then I've lived in a succession of friends' houses trying to get back on my feet, but what I didn't understand before losing my home was that I have an absolute requirement for a certain degree of 1) predictability and 2) quiet / stillness / social downtime. I have hypersensitive hearing and vision, and if I don't get those things, it drives me into unrelenting autistic burnout which at best decimates my ability to do tech work and at worst destroys my ability to think, make decisions, use written & spoken language, and exist as a human being in my own skin.

Nearly a decade I've lived like this, and I'm currently in the second least-worst place I've lived during that time, and I still don't have access to what I need to pull myself out of it. I live on a couch with no door and no privacy and a WFH housemate around the corner 16 to 17 hours a day who is one of those people who never stops moving and making noise for more than 5 minutes unless actively gaming or watching TV. At which point the speech noise from the game or TV (plus that of the other housemate who is able to remain still but who watches Youtube all day at 1.5x speed) would drive me absolutely bugfuck insane after a couple weeks continuous exposure if I didn't have white noise playing 24/7 and if I hadn't finally broken my compulsive need for situational awareness after years of brute force battle in order to wear noise canceling headphones much of the day.

I am aware I am extremely lucky thru all of this, and that many people in my situation have ended up on the street and/or literally dead (as in physically deceased) whereas I have not. There are a lot of reasons for that, I'm sure white privilege is one, my ingenuity in making it work is another (I taught myself to cook, people put up with a ne'er-do-well houseguest a lot longer when that houseguest can feed them delicious lowkey-gourmet meals on the relative cheap with consistency, so that's one way I contribute back). But this is my last stop before true outdoor homelessness.

I don't have any friends left who I could potentially stay with whenever my time is up here. I've been housing insecure for over a decade and food insecure for at least half of that and the reason I haven't got myself out of it since 2016 when I lost my home is because I've had no control of my physical environment, and I can't meet my sensory or social needs because at least one person in every single environment I've inhabited since then has not behaved like how my parents did when I was imprinting or whatever.

When at rest my parents tended to stay at rest, when in motion they tended to stay in motion, my brain attuned itself to that, that is now "predictable," and the other pattern which many humans have - being relentlessly active at fucking random the entire time they are awake, whether continuously or in intermittent small bursts - is absolute kryptonite which freezes my brain like nothing else. I have been trying to adapt for all these years and at this point I'm maxed out. If people would communicate about what's happening in a shared space so I knew what to expect, I could probably cope much better, but I have also discovered that what I thought was normal human behavior - using words to coordinate living in a house together - is not only apparently rare as fuck, but something a great number of people hate so much that they would rather have their skin flayed off or their eyes gouged out by wild birds. To this day this finding astounds me but I have no choice but to accept the evidence that this is how it is.

I honestly don't even really know if there's a point to this, I came here to lament that even though where I am now is less awful than some of the places I've lived since 2016, the level of emotional nourishment I get from my housemates is absolute zero, and I'd probably be chronically suicidal if not for one of their cats, plus the absolute godsend of having found a highly effective medication stack by 2018. But the total lack of warmth or engagement of any depth here is killing me all the same. I endure all the downsides of living on a couch in a sensory torture chamber with none of the benefits that living with more compatible people in the past has offered. I've been here a year and me and my housemates haven't eaten together even once, even when there's a meal prepared for everyone, which is frequent. Not even on Christmas. I hate it so much. I'm beat down, I'm nearing my existential wit's end, my sleep cycle is a mess due to strong incentive to stay up all night due to that being the only time I can have any peace, and after years of positive control since finding that med stack, I have learned that lax circadian control means I will have a bona fide depressive episode sooner or later. I was grazed by one this spring, and in my situation, getting depressed could straight up kill me because it's a risk factor for ending up outdoors (again).

I had no idea how common quicksand death traps like this are for AuDHD/ASD people. But I personally know multiple others in very similar situations, some worse, some better. My friend who can give me a few texts a day has a body covered with self-harm scars and has been thru electroshock and god knows what else because she is trapped with a loud go-getter parent who doesn't care about the impact their behavior has and doesn't give a fuck about the knock-on effects of that. I have a second-degree relative in the same scenario, minus the cutting and electroshock but with just as many psych ward stays, with a hyperthymic autistic parent of the loud sensation-seeking type who sleeps 6 hours a night max and hoards animals like you would not believe (multiple waterfowl next to the cooking area etc etc etc) and thinks their own flesh and blood needs to "toughen up" and so forth. And then two other friends in lesser scenarios than mine, and me in the middle.

Millions of us have lived and died exactly like this. And now I know it.

I'm getting to the point where I don't really see a way out of this for myself. I've had good luck with physical health thus far but I'm in my 40s and I have a hunch that my luck is soon to run out. I have been trying to get back on my feet as a developer (just doing web shit to start) most of this time because it's so much more lucrative than anything else I could do, when I'm able to do it, which is rare due to chronic sensory & social burnout literally removing my ability to think. I strongly doubt I will survive as long as either of my parents managed to do, and I'm near the point of no longer really giving a shit about that. The friends I still nominally have are burnt out and atomized and completely occupied with either struggle or pointless distractions or both. And I'm one of them! There is less to live for every year, people no longer bother to communicate and just leave each other on read, and now far too many of my friends are dead. It used to be from drugs or stupid behavior but now I'm at an age where it is starting to be from random health problems.

I don't have much fight left in me, even with the relative miracle of pharma propping me up. I manage to get a few precious weeks a year of alone time to keep myself alive and nominally sane by watching people's cats when they go on vacation, but it's never anywhere near enough to make progress on my tech projects that will get me some dev cred and open some doors, and it's nowhere near consistent enough to really allow me to work much or pull myself out of high impact burnout. My best friend died 3 years ago, and nothing has even come within a light year of filling that hole. I haven't had even a glimmer of romance in a decade, and at this point I'm so done with inescapable unwanted social contact that I'm legit terrified that a significant other would end up destroying my peace in the same way that all the people who've tried to help me all this time have done.

My only real approach to pull out of it at this point is to somehow ???-profit my way into owning a vehicle large enough to GO AWAY and obtain solitude, and be able to work (tech work) while I am wherever AWAY is. I don't have the vehicle, but over the last 5 years I have cobbled together the gear and the skills necessary to at least be able to work from anywhere with power and wifi/LTE (which is more complicated than most people think when you do actual development work and are too burnt out to rely on shitty always-changing Big Tech infra, or to consistently pay for cellular data, but that's another story).

I guess I will find out what becomes of me, time will tell.

The nice part is that I do feel better having belted all this out, and as an AuDHD with (well controlled) ultrarapid cycle bipolar 2, I've learned how to lean in to my moodiness and, with the help of the meds, rarely ever get stuck feeling irreparably shitty for too long. And having gone thru hundreds of cycles before getting that mood disorder under control, I have the gift of perspective to know that even the worst feelings can change.

If you read to the end - thank you - I will try not to hide from the cognitive load of reading & responding to any comments for 3 to 6 months like I usually do.

I still believe it's possible, in some future timelines, to get out of this and have a life (more) worth living, even if I can't see how from where I am now. Thanks for reading.

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submitted 3 months ago* (last edited 3 months ago) by Reverendender@sh.itjust.works to c/Autism@lemmy.dbzer0.com
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I've come to know a number of people who show lots of neurodivergent traits but who aren't necessarily autistic or otherwise neurodivergent, or are but only just cross the border. Do we have specific terms, research, or anything towards these types of people. I know at one point there was the term BAP (Broad Autism Phenotype), but this sounds very clinical. It's also personally been unusual to deal with as I can't really treat them like I would any other autistic person, or like a neurotypical.

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cross-posted from: https://beehaw.org/post/20753965

In this video oliSUNvia goes deep into neurodivergence, the western ideas about mental health and the expectations and assumption this brings about people, their brains and how things should or should not be in society.

A very good watch!

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until the last several years of my life I had no good understanding, and then what I suppose must have been my bad karma ripened and the Universe decided to teach me over and over and over again:

it is 100% possible to be an introvert who prefers quiet activities, and also be a motor-driven, always doing something Type A personality who has no concern whatsoever for stillness

I thought I would be okay living with introverts 🥲 but in practice after ending up with ones like this, nothing could be further from the truth 🥲 it is literally destroying my life while shortening my lifespan 🥲

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I'm a very typical late diagnosis case: "gifted" underachiever, sensitive, obedient afab. I'm about half way through my career, about 15 years in engineering. I'll let you do the rest of the math.

I'm outwardly successful but miserable and it's hurting my family too. A lot of the problem is burnout and I believe the only way to stop this is to just learn to live with my limitations (e.g. go feral, stop pretending in something I'm not) I thought that meant somehow figuring out how to work less and actually doing that instead of being in a constant panic.

Today I solved a problem that's been causing my client issues for YEARS. Things have always seemed off, but I was one voice against many telling me "that's normal" or writing me off as someone who isn't smart enough, professional enough, etc.

So anyways shit has gone off the rails and I'm told to drop everything and work on it. Finally, the closest to uninterrupted time to do my actual job versus all the bullshit I have to spend my limited energy on day to day!

Well, I've figured it out and it explains SO MUCH ABOUT EVERYTHING THAT'S WRONG WITH THIS PLACE. I'll spare the details (y'all know I'm publishing this shit later) but everything is just kind of "off" along the process path however the end result is really good so all the slightly off stuff gets ignored. For decades. Some of the stuff that's "slightly off" is costing big money. Like several times my salary big. I think I found the cause and now I just need to figure out the least risky way to get where we need to be. We're having runaway reactions (expensive, not dangerous) and it's poisoning itself so we need to be careful or we'll kill the whole thing.

I feel like I'm vibrating so hard I'm going to come off centre like a washing machine. I guess this is what stimming is? I've never allowed myself to feel this joy. Like, maybe a few times when I've been alone on a job site I'd shake a little when I figured something out. Or I'd do a 3 second long exaggerated cele, totally for the amusement of others and not because I physically can't stay still, nope not at all...

This fucking rules and I'm not going to hold it back any longer.

I'm fucking invincible if you just give me the time to process. My brain spits shit out faster than I can understand especially when I'm otherwise over stimulated. So it's like I miss everything and need to start again, and again... Like a constant loop of frustration.

I've been very angry at work, crying a lot too. People are acting weird around me because I'm at my limit and can't hide it. So I ask politely to only be contacted for emergencies, telling people I'll get back to them instead of dropping everything and people REALLY don't like that. I can see their reaction to my attempt to take care of myself and that sends me spiralling because it's just reinforcing that I'm not allowed to have limitations.

The past week I'm just so beyond my limit I just said fuck it and ignore all sorts of things and then ignore all the trouble I'm in about in. My bosses really don't care because they are also at their limits and I've got enough clout that I get some leniency before I have to deal with things. So I've been doing shit I love (with the aim to solve the problem). I've been in the lab - first serious time spent in one for years. I realise no one here really knows why they are doing certain tests or what to do with the results. Fuck. I'll have to deal with it later but for now I'm focused on listening to my own weird brain and going along for the ride.

Over the last couple of years I've started down so many lines of inquiry, so many investigations frustrated by having no "free" time. So I forget. I know something's not quite right but I don't have enough uninterrupted time to investigate. I took that time in the last two weeks, whether people wanted to give it to me or not.

A few months ago I started down the path of creating a new position for myself. I got a lot of what I asked for, but I think I can use this absolutely fucking massive result to finally get left the fuck alone to solve my puzzles.

Thanks for letting me scream that into the void 💕

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I'm learning French, long ago I found the idiom "c'est la vie" (this is life), and I like it quite a lot, it describes struggles that are common to human life, but then I found this one "c'est la vie de l'autiste" "this is the life for the autistic (person)", and I kinda fell in love with the idiom.

I think it is a beautiful idiom to describe our common struggles and hardships we face as autists, our shared problems and experience navigating trough life, and I thought I would like to share it, because I think is such a nice way to describe what unite us as autistic persons, the common struggles.

We get misunderstood, we misunderstand, we don't get the context, we hurt people without intention, we can't tolerate food, noises, textures, we get obsess on the topics we love only to find people don't care as much as we do, and so much more, for sure, for most autists, only some of these things are true for them, but on average, they are very real.

And yeah, I'm only focusing on the sad, there are a lot of good things about being autistic, but this idiom isn't for that.

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Autistic people are usually portrayed as change-adverse, and a lot of times traditional-tending people, and for sure some are, i have meet a few, but at the same time, a lot of new or alternative stuff is full to the brim of autists as well, like here, the Fediverse, is reasonably easy to find autists here, linux is another great example, linux spaces are full of linux-autist too.

In my experience, some autistic people are way more open to give a chance to new or different stuff than most people, not all autists, for sure, but many enough to notice this pattern, i think all people i have ever convinced to try linux are autistic, not even a single NT.

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cross-posted from: https://lemmy.dbzer0.com/post/38445203

I just launched a website for us all. The reason I created it is because good quality and relevant websites FOR us are hard to find. I mean, there are organization-owned websites that push political agendas, but ugh. I felt like there is a need for this.

I’m also looking for contributors! I want this website to have voices from all over the world. This is not my blog, I want it to be a valuable resource.

Please feel free to check it out, and give feedback on how it can be improved.

The link: https://www.thedigitalaspie.com/

The “aspie” part of the website name was chosen because it sounds less clinical or rather more casual/friendly. Please know that no offense is meant.

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