MadgePickles

joined 1 year ago

❤️I swear we're gonna get this all sorted out. Maybe not in our lifetimes, but we're gonna help it get there. Just by having these conversations we're gonna make it happen

[–] MadgePickles@lemmy.dbzer0.com 1 points 1 year ago (2 children)

I disagree that it will never happen. I think it's already starting to happen. Part of it is ND tiktok and Instagram and Reddit/Lemmy and YouTube educating people about it and helping people get diagnosed, part of it is research is ongoing allowing therapists/doctors to get better educated about these conditions, and yes part of it is ND people just deciding fuck it I'm done masking in this specific way in this specific environment and learning how to advocate for our needs and ask for accommodations so that it becomes better understood by NT and more commonly seen.

But I agree with you that for now my energy is best spent providing myself my own accommodations and protecting my energy. I love love love talking about this stuff online in the autism communities.

This post went bigger than any of the others I've made so more NTs came in asking to be educated and riling me up, so I have spent more energy talking to them about this than I would ever normally try to do. So far none of those comments seemed to sink in at all lolsob, in accordance with the prophecy. They tend to just ignore what you say and then repeat what they said before and add an "it's that easy" to the end. And then you slap yourself in the face and do some breathing exercises and walk away for awhile.

But the value I get in engaging with ND folks here is life changing. Just sharing our experiences with each other, commiserating. Makes me feel less alone and gives me spoons somehow. Gives me perspective, and sometimes tips, and resolve to prioritize my needs, and forgiveness for when I can't do the things that I feel I'm expected to do.

Anyway I'm rambling again. I just wanted to say I understand your sense that it's hopeless, and I'm sorry that you burned yourself out in that way and I hope you're taking care of yourself and that you have some people who support you.

It's hyperbole yes, but there's a kernal of truth to it.

Consider that this conversation is one example of the hundreds of examples ND people experience every single day for how they are asked to mask their initial reactions/responses/preferences for seemingly arbitrary meaningless reasons "just because" that's how it's been done and no one wants to care about how it impacts us day in and day out.

Consider how it is a cumulative effect that builds up. Frustration, embarrassment, confusion, annoyance, sadness, hurt, yes even rage at the stupidity and injustice of it all.

These are the emotions ND people in your life are experiencing every day all day as they go about trying to survive and fit in in a world that is constantly telling them that they are wrong for the way they instinctively react to things and their preferred ways of being and interacting are not only weird and wrong but somehow disturbing and put a target on their back for disrespect or worse, bullying, being ostracized, fired, or targeted for harassment.

Try to think about that before responding. Really think about what that would be like for someone to live with every single day in every interaction with other people.

Oh, they can pretend. They can pretend so freaking well that loads of people have ZERO idea they are experiencing any of this. They just see them as a little shy and a little weird. A loner. Creepy maybe. Or maybe they are so good at masking you don't even see that. You see a happy friendly person. Meanwhile inside they are so fucking tired.

All of these stupid little dances we have to play in order to be accepted. When being ourselves, why would that be so bad? It doesn't make any sense. But whenever we try to unmask, society very quickly shows us that is not acceptable.

[–] MadgePickles@lemmy.dbzer0.com 2 points 1 year ago (4 children)

"We refuse to learn it and adapt to it at our peril"

See that's the entire whole encompassing point of this post. We are literally "in peril" either way. We are all sick, literally burnt out exhausted from all the adapting and masking we are doing every gad dang freaking day to these arbitrary stupid social protocols that serve no purpose. I'm ready to stop. I'm ready to call it out and ask society to change itself for once. ND are literally killing ourselves to fit in and it barely ever works anyway! Accommodations are for everyone, meaning everyone benefits. Just accepting that this is how it is is fucking bullshit. How about NT have some personal fucking growth and acknowledge that they have not given half a shit about how much ND people have contributed to society while being shat on CONSTANTLY for being socially different.

Our brains work differently. It's equivalent to being from a different culture and speaking a different language. Many NT can learn to accept this and adapt their own behavior out of respect for this other person. It's far past time we stop looking at Neurodivergence as a disorder to be suppressed, and instead as a different way of being that is just as valid and that society needs to accept, truly, and adapt to accommodate our needs.

[–] MadgePickles@lemmy.dbzer0.com 1 points 1 year ago (2 children)

If you are asking this question you haven't read enough of the responses to this post. Consider refraining from commenting until you have read more and listened and reflected on the experiences of others different from yourself.

[–] MadgePickles@lemmy.dbzer0.com 4 points 1 year ago (3 children)

For me, fine would be my preferred generic response to these questions because that's generally how I actually am.

To me, good means actively happy. But generally speaking I'm more neutral. If there's nothing that has made me actively happy at that moment, and I'm also not actively annoyed or upset about something, then I'm just existing, neutral.

But people tend to question you when you do that. "Fine? Not good? What's wrong?🤔🥺" Which is annoying because I thought we were playing the game where you ask a question you don't want the answer to... But they want you to answer in very specific socially acceptable ways and fine is apparently negative to NT.

My favorite response is in Russian. Im Not Russian and don't even know if this is actually culturally accurate but being taught Russian in America we learned: "как дела?" (Kak Dela?- how goes it?) "нормальный" (normal'nyy - Normal¯⁠\⁠_⁠(~⁠)⁠_⁠/⁠¯)

[–] MadgePickles@lemmy.dbzer0.com 4 points 1 year ago (7 children)

This comment gets under my skin because in this community for autistic folks we have heard this kind of thinking our e-n-t-i-r-e lives and NT never ever ever ever understand just how much effort it takes for us to mask in order to fit in with their arbitrary ass rules that we consider hella dumb. I long for the day when a NT person comes into communities of autistic people and says, "wow, you know what, all this you're saying makes a lot of sense and this social protocol IS hella dumb and doesn't actually serve any valid purpose and I'm with you! I'm going to help out and join the movement to making society more accommodating to different brains preferred way to be, instead of assuming like everyone always does that the way society is is by definition the right and only way it should and could be." How about calls for personal growth that aren't ableist and full of unexplored privilege and ignorance about what masking actually does to us. Because I'll tell you right now that it is 100,000% devastating and the fact that many of us are keeping it together enough to survive is FUCKING MIRACULOUS and we honestly deserve monetary awards and rest and a fucking break.

[–] MadgePickles@lemmy.dbzer0.com 9 points 1 year ago* (last edited 1 year ago) (4 children)

Yes, it is genetic. If you are a woman, that makes a lot of sense as the diagnostic criteria is only now starting to catch girls more frequently, even though it's still very flawed. Girls (and non-white people) are missed because the diagnostic criteria was developed studying young white boys exclusively. It turns out symptoms of autism are very variable and girls are much more likely to mask their symptoms and fly under the radar as just shy or quirky.

Here's Kate Kahle on why autism is missed in girls https://youtu.be/UI6kObHls-4

Here's a YouTube channel from a mom who was late diagnosed after her child was diagnosed https://youtu.be/zoXmrGtybts

Autism Instagram talking about how the older generations of their families are all full of autism and just don't know it https://www.instagram.com/p/CvMwpDNxiPL/?igshid=MzRlODBiNWFlZA== https://www.instagram.com/p/Ct1VlsMxrSn/?igshid=MzRlODBiNWFlZA== https://www.instagram.com/p/CmFFZuDMjXJ/?igshid=MzRlODBiNWFlZA==

Scientific paper on heritability of autism "heritability was estimated to be 83%, suggesting that genetic factors may explain most of the risk for ASD. " https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5818813/

Haha how is this so universal. Definitely have used these scripts.

[–] MadgePickles@lemmy.dbzer0.com 2 points 1 year ago* (last edited 1 year ago)

There's a couple different issues at hand here. There's the social protocol being stupid and annoying part which is what I think you're referring to. I don't analyze my day like that with a stranger like a retail worker, or anyone at work. I know the social protocol. I just think it's a dumb game and I don't want to play.

Then there's another aspect which I was thinking about when I wrote the above comment. I was thinking about how even with dear friends, even with my partner who truly want to know how I am, I personally get tired of the question. And maybe that's unreasonable of me, and I know they mean it out of kindness and love. But it can feel formulaic, like ok are you just initiating a conversation and therefore don't need the full answer or are you really truly asking? Because when I know someone cares about me and wants to know that's when I feel like I need to run the above algorithm.

But chances are when people ask me how I am, honestly I'm probably dissociating right now in order to not be overcome by how exhausted and burnt out I am just trying to survive. So a. I don't really know how I am most of the time unless im in the middle of an emotional experience. And b. I don't really want to go and pull all those emotions up and relive them in order to analyze the words to summarize and describe them. That honestly makes me feel worse.

So what I wish I could figure out how to communicate to my loved ones is that I will tell you what I want you to know when it occurs to me to say it. And if you want to connect with me and talk to me, why don't you just tell me what's on your mind? What are you feeling if you have any feelings, or what are you doing? Or what's your current interest? Literally anything. I always want to hear from you and listen to what you've got to say and let the conversation grow from that. Because that's how I approach conversation. I just start talking to you about whatever it is I'm thinking about. If I just feel the urge to connect with someone I haven't spoken to in awhile, I'll usually say something like "thinking of you, hope you're well" because that's literally what's happening to me right now.

For me when I'm asked how are you? It feels as much pressure as a phone call. Like, please don't call me! It's such an imposition demanding attention immediately. I much prefer text so I can think about, draft and edit my response, and respond when I'm ready on my own time. So same with how are you? Like maybe I don't want to think about that right now. Maybe it's painful to think about how I am. Maybe I'm not ok but I'm just a saran wrap covering of keeping it together. So talking about it directly is too risky. But I want to talk to you.

Anyway, I can go on and on so I'm going to stop treating this like betterhelp. Hope some of that helped explain why I said what I said although I'm betting probably not. I think something you might have missed was that the post was intended for discussion among those who feel similarly, and really not asking for help. Because there is no help. It's just the way it is. We understand the social protocol, we just would prefer it to be different and find the whole charade to be one of the hundreds of daily ways we feel othered by society, showing us we don't fit in, which is often very unnerving and/or frustrating. And when you are feeling those things every day in every interaction with people, it's a cumulative effect. Ok I'm stopping for real

Agreed, I always love when I get to work with construction guys because they are some of the realest people I get to meet.

 

I read this article this morning and here are some highlights I think you'll appreciate

"The core difference between masked Autistics and PDA Autistics tends to be their approaches to external expectations. Masked Autistics strive to game out unspoken social rules, and to perform the roles expected of them, in order to avoid detection as disabled. PDA Autistics, in contrast, are often viscerally incapable of doing so."

"But the line between a masker and a PDAer is shaky, and may really just be a matter of one’s point of view. An Autistic person who strives with all their might to be easygoing and agreeable might still be viewed by ableist outsiders as too emotionally flat and hard to be around. Even when we parrot social scripts perfectly, research shows that neurotypicals still dislike us. So in many ways, masking and PDA are just two sides of the same isolating coin."

"PDAers are often misdiagnosed with related disorders such as ADHD or oppositional defiant disorder as children, or with conditions like Borderline Personality Disorder or Narcissistic Personality Disorder as adults. Though the PDA profile of Autism has been championed by a number of parents’ groups and clinicians, it currently is not listed in either the Diagnostic and Statistical Manual of mental disorders, or the International Classifications of Diseases."

"People sometimes get very attached to an understanding of disability that is rooted in biology, because they believe that is the only explanation that grants them permission to not function up to society’s punishing, impossible standards. But the reality is that neurotypicality’s punishing standards are not attainable to anyone, and so nobody should feel defective or broken for failing to meet up to them."

"While it may bring relief for a parent to believe their PDA Autistic child is failing to meet standards because of something neurologically wrong with them, questioning the standards themselves will prove way more fruitful."

"In a world where Autistics are conditioned to become passive and compliant, I’m thankful that my reflex is to reject and disappoint instead. It’s a good thing that sometimes I can be a little difficult to deal with."

"As a public-facing Autistic person, I receive many worried emails from the parents of PDA Autistic kids. They want my advice for how to “make” their kids feel better, “make” their kids do better, “encourage” their kids to do more. Instead, I wish most people could be more like PDAers. Perhaps if we all collectively refused to be pressured into painful compliance, the world would already be a lot more friendly to difference of all sorts."

 

I recently asked for recommendations elsewhere regarding a cost-effective phone with the best camera that's a reasonable price. Almost unanimous recommendations for a Pixel a couple years old. I'm a total noob for privacy stuff but joining Lemmy under the dbzer0 instance, I'm feeling more motivated to learn more and get out from under the thumb of major corps as much as possible.

Can you have a Pixel and still de-google? It seems unlikely... Any advice?

 

I've made a spreadsheet with a bunch of phone options. Mostly Samsung, Pixel, but there's a couple Motorola and One Plus. I'm most comfortable with Samsung Galaxy but I'm open to changing. I looked up the main considerations and it seems like Megapixels is pretty much the biggest factor but I want something that can zoom in and still get a decent focus.

I can't bring myself to spend $800 on a phone, I think the most I've ever spent is $350 and it felt painful but I'm also tired of being disappointed in my camera quality so I'm willing to go a little higher. My point being that I'm not asking for the best camera on the market because I'm sure I can't afford it. Even used S53s are being sold for like $700 lol. So I'm guessing something a couple years older. Please advise 🙏

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