I really need to know this, so please boost for visibility:
Are there any people out there on the autistic spectrum that have found a format of living that works for them, that makes them happy?
If you're on the spectrum and feel generally happy or content: do you have a routine, specific coping mechanism(s) or special life conditions that you recommend or feel privileged with? Did you feel happier after excluding some particular element of stress in some way?
If you're on the spectrum and feel generally unhappy: do you think there could be a happy existence for you if society enabled it?
I myself feel quite unhappy. I feel shunned by society, like a burden they're trying to avoid having to deal with.
I think society could do so much better. I like to contribute to the commons, create fictional worlds and experiment with ideas for programming languages and software. I do these things a lot, but I don't want to do it under obligation because I crash under the pressure of expectation.
My state of mind is unreliable, and my abilities drastically vary over time -- even from one hour to the next. This is incompatible with capitalist society. Nobody hires someone who takes a month to do what some tech-bro would do in a week because they don't obsess over details, implementation or about gaining a deep understanding of what they're even doing. If I don't get to obsess, I can't do anything at all.
If society would allow me to do what I'm _able_ to, _when_ I'm able to without worry or stress, I think I could maybe be happy.
I'm both surprised so many are happy and, from a more objective perspective, appalled at how much unhappiness there is.
I don't know how to feel about there being so many who are actually OK or even happy. On one hand it gives me a spark of hope, but on the other it makes me feel like I'm doing something wrong or have the wrong mindset somehow.
My experience in the society I find myself in has been demoralizing enough that I've come to accept being largely excluded from it and even resent the idea of further assimilation. I want off this train wreck, but I can't say I'm looking forward to walking the rest of the way either. Especially if some actually manage to ride it all the way to their destination anyway.
@sudoreboot One of the best arrangements in my life has been working from home as a freelancer/subcontractor: I never have to meet any work-related people, and I can work pretty much according to my own schedule and routines (all I have to do is keep deadlines, which is easy enough). I can also decide myself how much I work, thus being able to minimise time spent on working.
Of course it depends on your field if this is possible to attain or not. I happen to be a translator.
@Stoori Thanks for sharing.
I'd like to work freely, but I don't think working on contracted projects would work for me. Partly because it's not interesting so I would be literally unable to focus or perform, and partly because I can't deal with the stress of expectations and deadlines.
The only way I could see myself earning money is if I could just do what fancies my interest and then get paid after the fact based on the value of my contribution, but I don't know how such a system could be implemented. I've been working for like two months on a feature for an open source game (#Veloren) and people seem really excited about it, but I couldn't do it if I had to or if there was a bounty I had to race for.
@sudoreboot Yes, doing what you like for money is usually a good way to stop liking what you do, I've found out. That's why I've settled for work that isn't too exciting but also not devastating, so that it's just something that I do for a few hours a day and that's it.
Of course I often get the urge to find something more interesting to get enough money for living from, but I soon find out that this is pretty much the optimal situation and any changes would make it worse.
@Stoori Would be wonderful if working for money could be reserved for those who need the carrot and structure while self-motivated people could be allowed to do cool things on their own.
@sudoreboot I seem to receive "help" and meds, and I just have a long list of techniques to "manage", but it doesn't seem it's going to get much better for me than "managing". My subjective sense of wellbeing is low as a rule and I don't know what would take to ever change that. So it feels hopeless, like constantly threading water. I'm tired.
@sudoreboot The better my life becomes on paper, the more hope I seem to lose because it makes it more clear that there must be something in my brain that keeps me feeling like this. I cannot even picture a world or society or life where I wouldn't feel like this. I just live from one distraction to the other basically.
Never found a work arrangement that works, but I also never asked for any special accommodation.
I hope that it will change for the better once we move.
I will ask for all the help and accommodation I can get.
Other than work I feel pretty good when I get to live in a nice place like Iceland or Norrland. Berlin is awful but at least I have my heartfriend. Him + Norrland will be excellent I think.
@owl I've had "accommodations" in the workplace, but you know those work environments at for-profit, top-down companies.. they think accommodations is like a ritual that optimises your productivity, they don't care about your mental health or happiness.
In Sweden, "accommodations" for disabled is just something a company promises to get a partial refund on your salary from the state. I have no hope of ever being able to work for a faceless company run by capitalists. Not for long, anyway.
When I lived in a spacious flat in Oxelösund I felt quite happy. I was privileged with inherited money back then still; just enough to delay worrying about the future for a couple of years.
Now I'm deeply unhappy, living in an ugly, shitty area around shitty people (frat-kids), in a region I desperately want to escape, with no money, no plans, no hope for the future and the "only" support I'm getting is a 45 min counselling session per month and meds.
And the fact is that I'm still privileged..
@sudoreboot I was hoping to find a non-profit job, maybe working for the municipality.
That would be less soul-crushing for me.
I've already done the "successful tech startup" thing and it only burned me out.
Nobody can say I didn't try the normal way, at least.
@owl Yeah, public sector tends to have a much more relaxed work environment.
I have no experience with coops so I tend to idealise them, but I suppose they're only as good as the people who work there.
Non-profits sometimes have a constrained budget to work with, so I suspect those positions can be both hard to get and not always the most highly paid. Again, probably highly depends on the people involved.
I imagine the best environment for disabled people is a coop where everyone has each others' back, with very well-thought out and accommodating distribution of labour.
@sudoreboot I strongly agree with you. My abilities vary drastically over the course of a day. My coworkers are frustrated because they are consistent and I am not. Everything takes me longer than the others on my team. I also have difficulties doing a task unless I'm able to gain a deep understanding. Throughout my career I've been told "easily falls into rabbit holes".
When I was self-employed I was dating a woman who handled accounting and paying bills and focus switching things. It worked!
@sudoreboot I also was able to slowly grow my skills and abilities because I would only take on tasks I knew I could do in a reasonable time. I was able to say "NO" to tasks that I believed were unrealistic or tasks I knew I would accomplish poorly.
@sudoreboot The most frustrating part about wildly varying abilities are those rare days where I accomplish a week's worth of work in less than a day. My coworkers usually expect that to be the new normal. It's not 😞
@shapr Very familiar!
I did some archery in the past year and some days I felt like Robin Hood, others I would have trouble just hitting the paint. Let's not even talk about my cello playing. I'll never agree to sit on stage before I know what state I'll be in, that's for sure.
@sudoreboot I have found that my lability can be decreased with a "healthy lifestyle" though it took me years to discover that only meant "regular and consistent amounts of food, sleep, and exercise and as close to zero alcohol as possible".
@sudoreboot Days where I get 8 hours of not-interrupted sleep, I spent 45 minutes pushing myself with cardio, and I remembered to eat enough food ... I can do much! Most of the time.
I need to keep track of life stress and reduce that as much as possible, that can also push me out of balance.
On the good side, when I can get things in balance, I can do amazing things!
@sudoreboot i live in a hell-city right now, which makes it hard to cope/slid me right into burnout, after trying to get used to stress, pressure and constant irregularity of things, some of which were work-related and some weren't. heartfriend and i are looking to move away from here, and i expect that being in a quieter place will at least improve things in the sense that the environment won't be as constantly overwhelming as it is right now.
@sudoreboot the trickier part will be that i cannot continue to do the work i used to do. so i will have to focus on what else i can do, hopefully by then i'll be properly diagnosed and can maybe access some accommodation. i can't function in a full-time job, with irregular working times, deadlines, and/or lots of interactions with a lot of different people. i hope i will be able to find something that i can do once the other issues are somewhat dealt with.
@crowlad I recommend getting in line early to get a diagnosis and receive support. They can be several years long!
@sudoreboot thanks. i'm trying to do it while we're still here. but the only appointment i was able to make (which i had to wait for almost 2 months already) got postponed, so now i have to wait until the end of this month, and i don't know what they'll do and how long it might take. and the pandemic sure doesn't help with stuff like this either. so maybe i'll have to start anew once we have moved.
@crowlad the worst irony is that you have to be proactive and pushy about receiving the support you're eligible for. They'll try to find ways to forget and/or deny you. Thankfully you can appeal decisions.
@sudoreboot sounds like pretty much everything here so at least i have some experience with that, even though it exacerbates exhaustion and other burnout stuff each time.
@crowlad I should maybe not generalise all my complaints though. For all I know things are a bit better elsewhere in the country.
Tangent: some of the systemic problems are at least recognised by media (to little political effect, unfortunately):
long-ish answer (200 words)
@sudoreboot i'm really torn on this one
on the one hand, the question of work hasn't really ever arisen, as i was diagnosed after burning out of both work and a second degree course, and went straight onto disability benefits. i've found a way of living that i can at least cope with, which is more or less complete isolation
on the other hand, for 10 of the 12 years i've been on disability benefits i've been living under a government that's been pretty open about wanting to get rid of them... by getting rid of all the people claiming them. so every day i'm terrified that i'll wake up to discover that today is the day i've been kicked off them and no longer have an income
i also don't have any support or anything, aside from occasional contact with psychiatric services to help with comorbid MH issues - which again, is a very mixed blessing
and the accommodation i'm living in, while mostly warm and dry, feels extremely insecure and doesn't keep out noise at all, whether from next door or from the street outside; but because of the conditions imposed by the government moving at the moment is all but impossible
@sudoreboot I have severe ADHD, it causes problems, but I'm still mostly okay with the way my life is going?
Perhaps I don't see a way to improve, so I just suck it up and try to survive?
I want a fifth option "This really sucks but I'm surviving and don't know a path towards improvement".
@shapr I suppose I never thought of anything below "OK" as anything but unhappy.
I couldn't have added more options (I wanted to), but I appreciate your take on it. It's an interesting perspective I hadn't considered.
@sudoreboot I have nearly fifty years of thoughts on how to deal with ADHD in a world of capitalist tech-bros. I'm happy to discuss my thoughts at greater length, but also don't want to ramble about things you may not find interesting.
@shapr Feel free to ramble :) I can't promise I'll have the energy to reply but I'll read your rants with interest.
@sudoreboot Är du svensk? Jag bodde i sverige fem år, och det var samma tid när det mest fungera bra för mig.
Not quite sure how to best vote here, but most of my unhappiness comes from my more adhd traits, not my more autistic traits
@sudoreboot I had the same question 20 years ago. I use Maslow's Pyramid to solve it. I have to ensure that I have enough fibre, water, fruit, vegetables, minerals, vitamins in my diet, (and not too much.) Daily calisthenics, (I did taichi, but I currently find yoga more effective.) I need work where I can get into a flow state and feel productive and appreciated; weekly exercise; and people that want to give me hugs when I need them. When I have these I feel happy.
@sudoreboot Things that contribute to me feeling mostly pretty good actually: a real-life community of queer trans liberal-to-leftist neurodivergent people who genuinely get each other and love and support each other. a software job that makes really good money with a manager who gives me space to just sit back and work instead of weird neurotypical shit. It hasn't been without challenges, and I went through most of my life not having those things, but right now I'm mostly good.
@sudoreboot I think I'm autistic (self-diagnosed due to funds, never negatively diagnosed, and lots of psyche people agree I prob am)
I'm quite happy with my situation :>
(I have no contact with society at all outside the internet XD''' )
But debilitating loneliness is the downside (but interactive social interactions, like voicechat or minecraft or etc. fix that completely I've found :'3 )
(And I'm sure someone will want to spend time with me soon..I hope, so I put "expect to change") :3
@sudoreboot Interestingly, the negative effect on my mental health due to only being able to eat rice and beans and not having totally clean drinking water and living somewhere the inside never gets above the temp of a refrigerator (40°F) and I can't shower during all of winter..
is hardly anything compared to the positive effect of not being in society / having a job anymore X'3
overall I'd say I'm vastly better off mentally (even considering the extreme loneliness, and esp. if that's cured!)
@codepuppy Thanks for your perspective and sorry about the lack of comforts provided to you.
I also feel largely socially fulfilled from online interactions. Sometimes the lack of real life socialisation gets to me, but it tends to pass after a while and I just spend more time living through others socialising in videos and such.
I'm very lucky to have my life partner, without whom I would have felt a lot more lonely.
Hope the best for you!
@sudoreboot im in the middle of recovering from a traumatic event and autistic burnout, so it feels weird to feel like I have input as an "OK" person, but!
I think one of the most helpful things for me has been structuring my life around special interests. For example. Ive built up a freelance career as a DJ amd audio engineer and doing freelance tech installs. I find it incredibly difficult to do anything that isnt a special interest, so I kinda did this naturally before i even knew i was autistic.
I think the other most helpful thing is being able to work from home under (mostly) my own hours. For the most part, i just make music and sites for folx as an expression of my special interests that just happend to pay me. I am lucky that is computers/programming and music performance because I can turn those into work.
Idunno, i guess its all based in being in environments where stimming and social cues arent a problem.
@eclectic Thanks for sharing!
If you don't mind me asking: how do you deal with maintaining connections? That's one of the scary things about freelance to me; I'm terrible at "putting myself out there".
Another is my fear of getting stuck or losing interest mid project. Finishing projects is a great difficulty of mine for that reason, but I also have ADD.
@sudoreboot hmmm... Thats definitely a tough one. Social media is a great way to remind clients i exist, but ive been relying on that less and less these days. I also empower my clients to call me any time, putting that in their court.
When a project has to do with my sepcial interests, the only thing that stops me from getting them done is distractions like people and stimuli. So i cant really relate to struggling to complete projects? For me, its hard *not* to complete projects as they often represent a question that i can answer. (I.e. what does this moment in a game sound like, how do I utilize open source tech to accomplish the thing)
Its also helpful to note that a lot of my freelance gigs are for live shows, where the task is a bit impossible to not complete. I thrive off being left to make shit work for an entire night
@sudoreboot I had to reduce my workload to only part time and put together a strict schedule that includes morning exercise before I found myself to be consistently happy.
I get grouchy if I'm forced out of my comfort zone for more than about 6 hours a day or multiple days in a row, and also tend to fall into depression if exhausted.
@sudoreboot I think I'm able to somewhat function in my field, but I'm genuinely only able to do so because I'm going to much greater lengths than most people in public education would to keep my professional life distinct and separate from my personal life. No one from work can contact me and nothing work-related gets done at any point outside of my contracted hours, and for my own sake, I intend to keep things that way.
@sudoreboot I didn't vote but have a son that is autistic and I work in psychiatric care.
What works is very individual as the spectrum is very wide. What is important to remember is that social interaction is a skill.
Energy is a freshness product and needs a working routine to be optimized. Many I come in contact with are gaming long after midnight. Which means they are depleted during the day. When we accomplish a routine many can go on and get day jobs and more normal lives.
This means you have to put yourself through demands which can be testing. But doing so for awhile improves patience and with that self confidence. So going about and not putting yourself in a testing environment is a bad strategy long term. It's important to learn your limit and have strategies though.
Isolation is easy and the more you do it the harder it gets to break it. In my experience isolation leads to depression. So make sure to go out side as one of the routines.
@sudoreboot I don't think there's a special condition.
Most of my friends are on the spectrum or spectrum-adjacent. I'm in a decent place financially. I'm polyamorous, which is great for short, focused attention on partners (what I'm good at; constant low-grade interactions destroy me).
I write in my spare time, and my first novel is coming out this year.
Sunbeam City is a anticapitalist, antifascist solarpunk instance that is run collectively.