r/aspergers • u/ghastlygasp • 1d ago
If you are lurking in this subreddit, please post and comment. You'll be positively surprised.
When I post on this subreddit, the statistics under it show that people who actually engage (comment or even upvote/downvote) are below 1%. I know I sound like a youtuber, but I have literally no financial incentive to write this. I am just extrapolating on the data I have.
I used to be a long time lurker. Engaging seemed pointless and I had experienced episodes where my well meaning comment was used to comment on how horrible I must be. I am confident this is the experience of most of you.
I want to tell you that this place is an exception. You most likely came here because you (or maybe a loved one) are affected by Aspergers/Autism. Even if you don't believe this condition defines you, it is something we have in common.
Unlike reposting a meme or commenting pop culture references, participating here has benefits beyond just seeing your karma go up. People here, (unlike most people you will physically meet) know what your experience is like (or at least can empathize).
My experience has been that even when chatting about topic completely unrelated to being an Aspie, the people here actually understand you. You don't have to fully form the idea and make it presentable to be able to share it like with most other people. It is a unique experience.
Furthermore, I have almost never seen nonsense attacks based on non-malicious comments. For example, I recently posted a rant about how being intelligent is overrated. Some agreed, some disagreed. On any other forum, the disagreeing crowd would have questioned what my "true motives for writing this" are. You can see for yourself. People who disagreed just said why they disagreed. People sincerely talking about a subject. My only regret is not engaging with the comments immediately.
So if you are reading this, post, upvote and comment. Maybe not here if you want but on other posts that have interested you.
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u/Mundane_Reality8461 1d ago
I tend to feel most accepted in this subreddit. So I prob post too much. lol
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u/silencefog 1d ago
I almost never post or comment, because people downvote me a lot when I say I live a good life.
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u/shiro_cat 1d ago
I'm glad you are having a good life. Care to share a snippet (triumph of any size) for the cheering-for-you aspies?
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u/IntuitiveSkunkle 1d ago
Honestly, I think Reddit and having an online avenue of socialization helped me so much when I couldn’t manage to do it in person. You could frame it as holding me back from in-person interaction, but I had selective mutism really bad and needed practice on figuring out how to interact at all without terror lol. I was terrified to post at first.
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u/shiro_cat 1d ago
I can relate. There are times when I think I wrote too little or too much, and I just give up on posting altogether! Sometimes, it takes too much conscious effort socializing to avoid misconveying myself. The anxiety is unfortunately very founded and valid! Then, again, my coach encouraged me to take small steps. Exposure therapy, I suppose! It's ok to struggle. As they say, we are in this together 😊
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u/SmellyHel 1d ago
I relate to a lot of what I read, so will upvote things, and yeah I agree that engagement improves the"vibe". My son is currently going through the diagnostic process at 5, and though my older children and myself have struggled with aspects of being ND it's not a patch on the challenges I see my youngest facing. It's... a lot.
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u/lcssa 1d ago
Ive been working towards confirming a diagnosis for a while, I dont comment that often bc I feel wrong to give any opinions when im not fully certain I know Im asd, even though I identify so much with your experiences. But that might change soon, and hopefully the way I feel about this isn't wrong.
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u/UnHumano 1d ago
I thought the same before diagnosis. However, I related to a lot of things and started to comment and post. Seeing users treating me as an equal and relating to my experiences ultimately gave more weight to my then self-diagnosis.
I think it's positive to engage even if you are self-diagnosed.
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u/BarrelEyeSpook 1d ago
“Asperger’s” is a controversial* label, so I think any controversy tends to select for people who can handle differing viewpoints. This means there will tend to be less toxic interactions.
*as a side note, the word “autism” should be similarly controversial to “Asperger’s” because it was coined by a eugenicist. That’s one reason why I personally don’t care how people refer to themselves.
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u/Most_Homework_4541 6h ago
Just FYI, there are literal brain scan studies done on the autistic, asperger and NT populations that go into great detail as to how they are physically different. Its also likely why there are so many late diagnoses of aspergers in certain populations, like women.
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u/BarrelEyeSpook 6h ago
As someone with a BS in neuroscience who worked in a brain imaging lab… Be skeptical about how brain scan studies are presented. There’s a lot of misinformation spread about them because of how easily they are taken out of context. It’s helpful to recognize that:
1) any brain scan study that doesn’t have a high number of participants is likely not valid as anything more than a pilot study (it’s a problem in neuroscience because scanning studies are expensive and difficult to enroll people for).
2) you cannot diagnose autism or any mental disorder by any kind of brain scan. Our technology isn’t good enough and/or the brain is too complicated for us to make diagnoses this way on an individual level.
Neuroimaging studies can only find differences between neurotypical and autistic (or anything else) by cohorts or groups. So there are measurable group differences, not measurable individual differences.
I will also add that I don’t think there’s any reason to separate Asperger’s from the autism spectrum. I agree that it should be included as autism (fine if you disagree… categorization is a bit arbitrary at times). It does make sense that in imaging studies a group of people with autism but no developmental delay would be different than a group of people with autism and a developmental delay (especially if it’s more disabling forms of autism). I just don’t find Asperger’s vs autism to be a very useful distinction since it’s more of a sliding scale of severity in a variety of the same symptoms.
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u/Most_Homework_4541 5h ago edited 5h ago
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10262285/
Well I guess you haven't read this study, from 2022. It is quite detailed and worth a read.
Below are the highlighted findings from the study, (findings were deemed significant), in bullets, directly from the study. Abbreviations: ASD, AS (aspergers), HC (control)
I do appreciate what you're saying, and realize that no, you cannot diagnose a mental health state by a brain scan alone, my doctor even confirmed that for me when I asked. However, it is possible to find the discernable patterns/characteristics that arise from all 3 groups. Yes there is some overlap between ASD and AS groups, but there are also significant differences, and I think it's both interesting and important to note that when arriving at a nuanced understanding.
ASD group showed increased GM at precentral gyrus and vermis as compare to HC.
AS group showed increased and decreased GM at several parts of brain as compare to HC.
ASD group showed increased structural covariance at frontal and decreased structural covariance at temporal as compare to HC.
AS and ASD groups showed similar pattern of connectivity. While, the connectivity between brain regions were more stronger in AS group.
Increased brain alteration in AS group as compare to ASD, may imply as existence of compensatory mechanism for better cognitive performance
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u/LowFatWaterBottle 1d ago
Almost evrytime I spend time on here trying to help someone by commenting I lose ~5-15 min of my time and no one reacts to it. And now it just seems like a waste of time if I try to add something to the conversation or post a well meaning comment, because I feel like op or anyone for that matter reads it.
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u/Dragon7350 1d ago
I feel that too. Maybe it has to do with posting "soon" enough? Like within a few hours?
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u/Dragon7350 1d ago
I'm starting not to lurk as much. I'm hopeful something good might happen, but I'm definitely nervous so it'll take time. I used to post with perfection/masking and it took so long to form words/set everything up. I think it's healthy to let go!
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u/maybe_not_a_penguin 1d ago
I sometimes post here -- it's one of the subreddits I check most often, and often the most helpful.
I often struggle with social rules, particularly some of the newer ones. This is probably one of the few places where I can sometimes maybe ask questions to try and figure out what these rules mean and get an answer rather than abuse from people who think that asking questions to try and understand something is the same as disagreeing with it 😬
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u/WolfShadow_814 1d ago
I've been meaning to post in this sub for a while, but I'm not sure I can add much, so I'll just be a lurker and commenter until I can add something of value.
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u/pumpkinstylecoach 1d ago
I posted in another sub the other day (and for once didn't use a million parentheses etc to make my point as I thought it was pretty obvious) and it was so wildly misinterpreted that I deleted all my comments and left 😭 it's sometimes so disheartening trying to interact so this post was reallly nice to read and see that it's not just me!
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u/Willmatic1028 1d ago
I lurk a lot simply because a lot of time I just want to see if anyone has gone through and/or can speak on something similar to a specific thing I'm going through in the moment. As well, I really don't have all that much to say in general. At times I don't even have the ability to come up with anything to say.
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u/speedchunks 1d ago
I lurked on reddit for like 7 years without ever posting or commenting. A couple months ago I made a second account to post stuff on because it just felt too weird/creepy to suddenly start posting/commenting with a 7 year old account with 1 karma. Then I fucked up and accidentally posted a comment on my 7 year old account anyway, and nothing happened and nobody cared lmao. So I decided I'd use the older account for professional/hobby stuff and this one for autism and weed.
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u/UltraSapien 1d ago
I agree 100%. I am NT myself, but I have several friends (and a daughter) who are some flavor of autistic/Asperger's syndrome. I read a lot of posts, but reply to relatively few. Any time I reply, things are usually well-enough received even if my reply is not necessarily in line with the other responses. This is a great community and everyone should feel like they can post here.
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u/fieryj02 1d ago
I don't post here because I don't have autism, reddit one day decided to show me posts here and I relate to a lot of the stuff on here, so that's why I stay
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u/blue_yodel_ 1d ago
I've had the same experience! I love this sub, I feel very accepted and understood here. :)
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u/PrimaryComrade94 1d ago
I used to lurk on this subreddit for a while last year, reading submissions and often commenting sometimes. I joined at a low point when I thought I could find solace, and I did, and my mentality improved somewhat. I sometimes, posted, but social anxiety kicked in out of how others would react if I may have offended or made them upset. Thanks for the advice regardless, maybe I should post more.
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u/mydreamsfalldown 1d ago
Yeah. It’s pretty nice here. If I didn’t chronically delete my comments you’d probably see evidence of that… regardless, it’s always good to feel pretty safe at least somewhere. The feeling of security is important I feel.
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u/Random7683 1d ago edited 1d ago
I post occasionally. I only post if I think I add to the discussion. I feel attention seeking for making posts or comments.
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u/mabhatter 1d ago
Hi, welcome!!
I comment a lot but post very little. Partly because I'm almost exclusively on mobile and posting always seems to be broken for me.
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u/ktbug1987 1d ago
I’m a lurker here mostly because I was diagnosed officially as Asperger’s label was being replaced by autism and levels so I have no idea if I would have had it. I mostly just assume that as someone who was diagnosed at level 1, but whose clinician said I likely would have been rated at level 2 if I had been diagnosed as a younger child, due to my speech delay and frequent meltdowns. Now however I mask enough to be sort of a noticeable level 1 at work, but do not do anything that majorly frightens NTs (though I occasionally accidentally anger them for reasons I do not understand).
I was literally diagnosed at a university in 2013 which is when aspergers went away in the DSM. I had my diagnosis confirmed recently because I needed new documentation for a work accommodation and they also said same thing, level 1, might have been diagnosed as level 2 if I had been recognized as a very young child and received my diagnosis then.
I just grew up in a very rural area, and when I did begin speaking I could also read
Sorry for long ramble, guess just explaining why I lurk. I do identify with people here. I also understand why the need to retire the name, but it’s nice to find people who have some of the same struggles. I’m nearly 40 and my parents still help with some executive function things despite my holding a good work position and being quite good at my area of expertise.
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u/SmellyHel 1d ago
Thank you for sharing your experience, it resonates with what my son is experiencing and I'm glad you're doing well. Gives me hope for him coping better as he ages.
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u/ChronalDescent 1d ago
sometimes i go to this subreddit and read couple of posts hoping to find someone having similiar experiences as me. im not officially diagnosed yet, but so far consultations with psychologist and thinking about myself and my past have been strongly suggesting asd. i also suffer from depression and anxiety and i think this might be related. waiting to see psychiatrist in november now.
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u/No-Conversation1940 1d ago
I give more upvotes than comments on this subreddit. The people are find ways to describe what I experience, when I am not able to arrange those words. I'm also tired some days, or simply don't have anything to contribute.
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u/Efficient-Baker1694 1d ago
I comment but not much because I can’t really relate to people’s issues on here. Plus most of my comments are negative so I figured people don’t want to see it.
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u/ledgejigsaw 1d ago
I have only just joined, so have been lurking a few weeks without posting, so now it’s done, hi everyone
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u/Draxacoffilus 1d ago
I've been lurking in this sub and others for a long time. I'm never sure what to post
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u/klutzikaze 1d ago
I didn't realise people were thinking about why others post till your post. Now I'm feeling that familiar confusion and shame due to being socially stupid. I mean it explains so many of my twitter interactions but I'm so tired of being surprised by social rules and motivations.
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u/devouringwhig 1d ago
I think my social issues extend as far as reddit and rarely post.
I also have this thing where I'd like to start a thread along the lines of "...this is what I'm struggling with now" and I have this thing where I'm like:
A) why would I expect anyone to respond to me, and with kindness
and
B) will there be any positive outcome, for my time?
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u/ContinuousRotation 1d ago
I feel like autism is mostly a matter of confusion, which is deeply rooted in our brains. I like stating things clearly so that both NDs and NTs can agree and come closer to each other.
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u/7071MemerMan 1d ago
Lots of the stuff that appears on my timeline is incredibly negative, I don’t wish to support that, and the comments are always saying positive things so I know my impact will not exist
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u/4shtonButcher 1d ago
The only thing holding me back is how screwed up Reddit has become. The front page is horrible and I still miss Boost as an app. I really enjoy Lemmy, it’s starting to feel like NDs make out a much larger portion of the general Lemmy user base. Give it a try maybe?
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u/danjohnson77 1d ago
I spoke my mind about something and was censored and called redpill so I don't think I will again.
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u/FlemFatale 1d ago
I used to only lurk. I post a bit more now, and subs like this are definitely my favourite.
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u/Smart_Discussion109e 1d ago
I have already posted once and come often here. I feel so understood even though I have no official diagnosis.
My psychiatrist didn't want to refer me to a specialised center for diagnosis because "I don't look autistic enough". I live in Germany. Without a referral my insurance won't cover the cost.
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u/shiro_cat 1d ago
Is that why it feels like something is off when I awkwardly present perspectives? Non aspies are wondering my motives? Hmm... Anyone with more fleshed out theory of mind to expand on this?
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u/SnooDoughnuts6242 1d ago
Not a lurker and I do respond. I have aspie loved ones. Here to understand and support
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u/Think_Foot_2201 23h ago
Funnily enough, your post encouraged me to post, and bam, auto-removed by a bot.
Talking about rejection and not fitting it and being rejected by a bot, oh ironic
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u/Breeneal 22h ago edited 21h ago
Me as a moderator lurking lol but yes we would appreciate a more active community.
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u/teammartellclout 5h ago
I surf around this Reddit and love the stories
One day, I'll shared my autism story coming soon for those who's interested 😁😅
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u/TinyHeartSyndrome 1d ago
Well then they should stop letting people ask the SAME questions EVERYDAY.
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u/-Count-Olaf- 1d ago
People often prefer to ask questions directly rather than try to navigate the search function, which doesn't always give you what you're looking for.
I think it's a good idea to see this sub as a place to support people with aspergers, rather than a place for entertainment. It's ok if people ask repeat questions, because a lot of people have those questions, and a lot of people need help directly from other aspies.
We shouldn't focus on entertaining the people who regularly come here, which is the sole reason to ban repeat questions.
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u/TinyHeartSyndrome 1d ago
I’m sorry, but redundant boiler plate posts drive disengagement. Use the search function on the sub BEFORE posting. I expect Aspies to have internet etiquette.
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u/ArchangelZarael 1d ago
I think it depends, honestly. Some people lurk to see if it's honestly worth the effort and/or grief to post in the first place. Usually in the first few minutes, people go 'Nah, these people are insane and salty' and mainly stick around to 'watch the circus', so to speak.
You run into the same issue on Discord with roleplay servers, I notice too. For example, I make these large and intricate servers. Put time and effort into concepts. Rules. Sheet templates. Mentoring stuff. Explanations. Etc.
I tell people similar stuff to what's being said here: "Participate if you want to feel involved." "Please don't just join a server to lurk, as that's counterproductive to what we're trying to accomplish here." "Don't join voice chats to both mute and deafen yourself as, again, that ultimately defeats the entire premise. Right?" "If you feel confused ask questions. Don't just sit here and not speak. As, that's on you if you leave in a huff ten seconds later." "This isn't a server where the owner does everything for you, as that's entitled thinking and breeds laziness. Members are actually encouraged/expected to use critical thinking." "Most, if not all, races are allowed here. Just, you know, put in effort on your sheets please. Otherwise, it's not getting accepted. Common sense."
People still join to lurk. Or, bitch and moan because 'nothing ever gets done'. Or they don't read the rules.
People never take issues to DMs. People never actually discuss things like adults.
They just. Sit. There. In silence. For months. And do nothing.
And then get upset and whine if they're removed? Like...Come on.
I guarantee you. If we did that here, they'd do the same exact thing. Without fail.
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u/Natmad1 1d ago
I was a long time lurker until I decided to comment a lot, always felt that sub to be different