Post #1787614
2026-04-29 20:20 UTC
Replies (19)
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@Azzura@lgbtqia.space 2026-05-05 08:18
@pathfinder@beige.party In my experience, who grew up constantly hearing I am wrong and I am supposed to do things other ways, asking or even accepting offered help most of my life felt dangerous. It felt the help from others would replace my way of seeing or solving things. The fundamental experience is when help is offered, I did not have a say in how it goes. I believe most of us, who are diagnosed late, are so internalised that help means accepting ‘their’ way of thinking, we have a hard time grasping the concept of someone genuinely wanting to help and willing to do it in our terms. When this happens and someone accepts how I want to solve things, to this day, it feels really strange, unknown. This dynamic, what we bring from our childhood, maybe more detrimental than any rigid thinking or yearning for independence. If help does not look safe, who would blame us for hesitating to accept it? @autistics@fedigroups.social
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@CuriousMagpie@beige.party 2026-04-29 20:37
@pathfinder oh interesting! As I read your post, I decided that I want to live independently just like your neighbor - an independent node in a web of kindness.
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@BlinkWithAKink@mastodon.online 2026-04-29 20:39
@pathfinder @yourautisticlife true of blind people also regarding attitudes towards independence
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@ActuallyAutistic@autistics.life 2026-04-29 20:45
@pathfinder @autistics This was a great read. I also want to be as independent as I can.
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@adelinej@piaille.fr 2026-04-29 21:07
@pathfinder Do you think it will still be possible these days for this neighbor to live the same way? Will she get the same amount of help?
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@brunogirin@mastodon.me.uk 2026-04-29 21:14
@pathfinder @autistics My grandmother lived mostly independently in her flat until she was 94. This was possible thanks to friendly neighbours and to the fact that she had shops and public transport on her doorstep. A friend just celebrated her dad's 90th birthday. He lives independently thanks to the community network in the village. He has an old people's group where the younger ones (60+) who can still drive pick up the older ones to go for a meal or drink.
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@misaimed_brain@mas.to 2026-04-29 21:43
@pathfinder @autistics Yes, I'd love to have an unrealistic level of independence. Partly that is because I have a tendency to feel constrained by others, and partly because any support offered can be taken away.
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@Ailbhe@mendeddrum.org 2026-04-29 22:19
@pathfinder @autistics Nobody is actually independent, really; we live interlaced lives and rely on all kinds of community and infrastructure. What I think that old lady might have had which others don't is autonomy. People helped her to do the things she wanted to do, not constrained her. Absolutely lovely and I hope to achieve it myself, somehow.
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@Sh41@androiddev.social 2026-04-29 22:25
@pathfinder @autistics interesting, very thought provoking. Autism and independence are Indeed a tricky couple, in many ways.
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@HarmonthSeeker@caneandable.social 2026-04-29 23:39
@pathfinder @autistics I see it in interdependence. which is a good thing.
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@transience@beige.party 2026-04-30 03:34
@pathfinder @autistics Oh wow, what an excellent point!
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@KaCi@autistics.life 2026-04-30 05:38
@pathfinder @autistics Thank you so much for this important post, that makes us think and write about individualism, community and disability, for pointing out, that needing support doesn’t mean that we are not independent. Similar to @Susan60 I don´t see the root cause for this individualistic view of independence in autistic black and white thinking, but in capitalism and white supremacy culture. The personal is very much political here. Capitalists believe that the one who hoards the most resources and exploits the most people is the most independent, which is nonsensical in itself. For us as autistic people “normal” often doesn’t work, because we are different, we experience the world differently, process information differently and communicate differently. For that reason, we have a strong drive for autonomy, we like to do things our own way, which is then pathologized as PDA. Your conclusion, that autistic people feel bad for needing support, because of our black and white thinking, reminds me a bit too much of the trope of the stubborn disabled person. This is how we are portrait in media so often, that we are the problem and that there’s a happy end as soon as we just accept the support, that is offered to us. It shifts the responsibility for lack of support to the individual instead of understanding it as a systemic issue. But the truth is, that most of us do not have access to the support we need and that we have to give up our autonomy for the little support we get. So, for me as an anarchist your heartwarming story about this old lady shows that we do not need a state, that makes us prove over and over again how disabled we are, which not only costs us energy, but is also a waste of resources, but that we need community. It’s part of my bottom up thinking as an autistic person. Unfortunately for us autistic people finding community is even more difficult, because of our differences, which makes us being even more isolated and in danger of our autonomy being taken away from us by a system that frames us as the problem. Capitalism takes peoples capacity for mutual support away and then sells it back to us, which makes access to support a privilege, a class issue.
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@shadows@beige.party 2026-04-30 06:12
@pathfinder @autistics for me personally it often comes down to expectations. Because if I agree to help in the future, and when the time comes I’m barely hanging on, then I face the nearly impossible choice to likely go over the edge if I do follow through, but being unable to back out. And usually I look perfectly fine even when I’m right on the edge, so others won’t understand it. It works the same way if I accept help. I feel an obligation to return it. Or, if I offer help on something that is a recurring task, then I feel an obligation to keep doing it (even if I only offered help the one time). I really hate that this is the way it works for me. A lot of it also comes down to my baseline levels of stress. The more I have to drive, the higher they will be. The more I’m around people, the higher it will be.
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@jetlagjen@gts.phillipsuk.org 2026-04-30 07:09
@pathfinder @autistics oh, gosh, yes. Independence is a concept that has caused huge damage to my son. Towards the end of primary school, he and his peers were encouraged to be independent. He, undiagnosed at the time, took the autistic understanding of total independence in all ways on all matters. But *nobody* can do that, certainly not a 10 year old autistic kid in our unforgiving world. Trying broke him. We talked a lot about how independence did not imply isolation, and working together to help each other was good for everyone. I pointed out some of the many ways I, an independent adult, relied on others - every product and service I paid for, for a start. We discussed the idea that knowing when to ask for help instead of watching things collapse is itself a form of independence. And we talked about the value of giving things a go, versus not even trying, and how *that* is the kind of independence his teachers were really talking about. He's now at college and the I-word is cropping up again. But this time, instead of just cutting everyone out, he's articulating his desire for increased independence and we're working together on what that looks like. It has taken a lot of work over the last decade to get to that level of communication and collaboration.
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@hauchvonstaub@nrw.social 2026-04-30 12:02
@pathfinder For me it's in part a "cost-benefit calculation". The "emotional labor" involved and the expectations of how to behave often aren't worth the slim prospect of support. Not only are a lot of forms of support treated as a given, while others are not, so is the expected way to deal with this support. For me, even if I'd expect to be able to get help, the search for help and performance of "neediness" and "gratitude" seem more costly than the help I could expect. 1/ @autistics
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@SerenaTori@dragonscave.space 2026-04-30 21:15
@pathfinder @x0 @autistics Yeah, and one of the things that took me so long to learn, is independence doesn’t mean doing absolutely everything yourself with no help. True independence is knowing when you need help and being able to accept it or even ask for it. That is true independence. As you said no humans are truly what we call independent, we all need someone for something at some point on a regular basis. We just don’t think about that.
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@strypey@mastodon.nzoss.nz 2026-05-01 00:07
@pathfinder > because hardly anyone lives truly independently of everyone else Not just hardly anybody. *Nobody*. Not one. Prove me wrong, rugged individualist fedi, I dare you. @autistics
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@pelavarre@social.vivaldi.net 2026-05-02 18:03
@pathfinder @autistics """ Hardly anyone lives truly independently of everyone else. There is always occasional and more than occasional food, or help, or just someone you can call on """ Independence as an absolute doesn't really exist, ... except, perhaps, for us. I don't know whether it is our tendency towards black or white thinking, or ... Liberty or death, aye We're all free to choose death, but how many of us choose without thinking and then die astonished? My father died when he grew too old to care for himself. He fell ill, and he got the surgery he needed. But he argued down the staff at the hospital, and he left days before they felt he was ready Home alone, he then turned off the pain with pills leftover from an expired prediction whose expiry he declined to respect Across the next couple of days that got him sick enough that they couldn't bring him back when he did call for help. He just died, though by then he was unwilling And we know, at his death, he left a loaded pistol behind inside the drawer of his bedside table All of us together didn't persuade him to live differently. Going completely off the grid is eventually lethal Can we still change the thinking of someone similar, but still alive now? Really? How.
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@bakuninboys@aus.social 2026-05-03 00:00
@pathfinder @autistics oh you ended with autistic people. I thought you were going to say "white people". I always thought it was a Christianity / original sin thing.