My issues with the greater autism community.

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starkid
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10 Oct 2013, 6:35 pm

1401b wrote:
I don't think that math accuracy was his point.
I think his point was something about an amazingly high posting output.
in

30,000 posts is not an amazingly high posting output if it is spread out over three years, so accuracy concerning the time period is relevant to the OPs point.



wozeree
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10 Oct 2013, 6:40 pm

Have you ever seen the kind of posts that Cornflake makes? He's the fixer/explainer guy. He probably made half those posts just explaining why a like button is a bad idea.



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10 Oct 2013, 7:23 pm

Northeastern292 wrote:
I'm sorry for this rant, but I do need to question the autism community on these things. This (and I STATE THIS CLEARLY) is not an attack on anyone, but more questioning the mentality of our community. Or am I just being totally unfair?


I think there's no pressure from any corners for anyone on the spectrum to be actively involved in the wider autism community nor wear their autism on their sleeve. Each to their own.

I myself don't know anyone with Aspergers or autism in my daily life other than here on WP. I certainly don't even think about autism at all when I talk to NTs. This will be different for others whom are perhaps made aware of their differences and so do have to deal with their autism in any interaction they have with the NT world.



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10 Oct 2013, 7:26 pm

daydreamer84 wrote:
The thing is that autistic people are likely to become obsessive about specific topics and perseverate on things. Therefore it makes sense that at-least some of us become obsessed with our condition and it becomes our whole lives when we set out to learn about it or meet others with the same disorder ect. It's a very autistic thing to do. :lol:


Daydreamer is right; AS and autism are one of my special interests, but that doesn't mean I dwell on the negative aspects of them. I use my understanding of the disorder to make my own life easier (such as discovering I need and subsequently finding sensory integration tools to lessen my physical discomfort, for example) as well as spreading awareness of the condition and what it's really like to friends and family in the hope that they'll spread it even farther. Joining groups like WP and AU can also give an otherwise friendless person a place to go and be understood, thereby lessening their loneliness and possible depression. As long as it's kept positive and informative, I see nothing wrong with delving deep into ASDs. Not to mention, you can't entirely blame the autistic person who gets obsessed by autism or anything else; more often than not we don't choose our interests, they choose us. I for one have been obsessed by some pretty weird crap before. Like left handedness... and eyeglasses, for no reason at all.


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btbnnyr
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10 Oct 2013, 9:54 pm

I don't know anything about facebook autism community, but I didn't like tumblr autism community.


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Verdandi
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10 Oct 2013, 10:22 pm

Northeastern292 wrote:
I'm sorry for this rant, but I do need to question the autism community on these things. This (and I STATE THIS CLEARLY) is not an attack on anyone, but more questioning the mentality of our community. Or am I just being totally unfair?


I think you're reading a lot into things that aren't there.

Not everyone has lives like you or priorities like you. Nor does their participation on this forum or Facebook or wherever reflect the entirety of anyone's life. This is a forum for autistic people, so naturally people are going to spend a lot of time discussing autism here. You may find that many of us also participate on other forums and discuss other things.

As far as criticizing post count, that's unnecessary and inflammatory, whatever your intention behind doing so.

And I'm not particularly bothered as long as it's okay to find attitudes like those you expressed repulsive. Because they kinda are.



vickygleitz
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11 Oct 2013, 9:42 am

I spend quite a bit of time on here. I am one member. Not that it's any of your business but I am here because my treatment for cancer has side effects that pretty much physically disable me. It also turns my mind to jello hindering other activities as well.

In addition I am here because I need the emotional support. I am clawing my way out of a deep pit of despair and I am thankful that so many WP members are here helping me to climb out.

I am putting together a mini retreat for other autists and people on WP are giving me fantastic ideas.

I guess I take some sick thrill into interacting with people who accept me.

I am sure every WPer has his/her own unique reasons for being here. Including, maybe especially those who post over 10000 a year.

You say that you do not intend to offend anyone but I find it difficult to believe that was not your intention.



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11 Oct 2013, 10:10 am

I don't think you're being unfair bringing this up.

I don't think it's the community at large, but rather a select small percentage of it that may behave this way - as with almost anything, pareto's law applies. It's not fair to paint the entire "community," with the same brush ie applying the halo effect to your view of other autistic spectrum'd people. Other than that there's no issue with bringing it up.

30K posts a year = obsessive special interest in this forum, nothing more nothing less - it is what it is. That persons interest may fade/change/disappear in time as all special interests may. But maybe not. Nonetheless, it's not you nor your time nor interest so who cares? Live and let live.

But I hear ya.. being on the spectrum doesn't have to be one's whole identity for sure, and I'd never want to make it so for myself. About 1.5 years ago when I first realized I was on the spectrum and began learning about it, it became a special interest for me and a friend of mine would have to point out that I was annoyingly discussing nothing but this crap... and I appreciated that he did so, as I didn't want to be a bore. I've long since moved on from my obsessive learning and talking about it as I went. Thank God lol. Now it's just an ever smaller part of who I am & that's it. Maybe those who are currently way overdoing it will find a better balance themselves in time?


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devark
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11 Oct 2013, 10:14 am

For me autism means, that those without autism have identified or associated me as, an individual with autism. Merely a label, a useful categorization for others to use to help understand me, but nothing more. I also observe the same "trends" that you pointed out, however I never gave them much thought.


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11 Oct 2013, 3:35 pm

Northeastern292 wrote:
By no means am I attacking anyone personally, and if anyone sees it this way, I would hope that a moderator locks this topic and fast.

Lately, I've found myself more and more repulsed by other auties and Aspies. In general, I know several, on here and on Facebook who drown their lives in autism. There's more to life than our conditions. Let me paraphrase a (semi-celebrity) crush: Autism doesn't define me, yes, it's part of who I am. But there's more to me than my autism/Asperger's. Yes, I do understand that there are some, even on Facebook, who have it a LOT worse than I have it.

From a Facebook post this morning:

Quote:
just to keep you updated, we've had issues in this group with things being called "creepy" so in the future please try to use another word?


When did "creepy" become another "r" type word? I didn't know what "creepy" was offensive! My challenge to my fellow WPers: find words in the English lexicon that are synonymous for "creepy".

Third: I still don't get how you can have been a member here for a year and have 30,000 posts. Just don't get it.

And lastly: the Âû Facebook Fad: As almost all of you know, Âû is short for the invisible Autism Union (or is it Autism United), which I see as no more than a FAD. I'm all for autism solidarity, but I'm not going to have it tattooed. There is more to my life than having an autism diagnosis: my friends and family, my interests, my passions.

I'm sorry for this rant, but I do need to question the autism community on these things. This (and I STATE THIS CLEARLY) is not an attack on anyone, but more questioning the mentality of our community. Or am I just being totally unfair?

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This (and I STATE THIS CLEARLY) is not an attack on anyone, but more questioning the mentality of our community. Or am I just being totally unfair?

Speaking as an older person whose deepest and most passionate interest is social science with the special focus of the formation of online communities and how certain communities can affect greater humanity, and with almost twenty years of study of this subject behind me, what you are doing is not only sane, but rings a bell of great mental clarity. I have recently started a thread to try to go into this very deeply, Playing the Autism Card May Be Harmful to Humanity, and also a couple of subsidiary threads, one about catfishing and stone puppetry and another discussing two autism videos, but the first thread is the most important, imo.

No time to write now, but the fact that you feel you need to be stating so clearly and emphatically--and I think you do need to here--that you are not attacking individuals, rings another kind of bell, an alarm bell.

Thank you for being a person who loves to enquire and question and so begin to discover more and more as you go along the nature of how things work and how people interconnect according to certain principles.. This kind of enquiry is the beginning of greater doing (or what could be called real doing) and also the foundation for deeply meaningful and transformational relationships which will affect the well being of not only those of us here now but also possibly future generations..



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11 Oct 2013, 4:35 pm

littlebee wrote:
Thank you for being a person who loves to enquire and question and so begin to discover more and more as you go along the nature of how things work and how people interconnect according to certain principles.. This kind of enquiry is the beginning of greater doing (or what could be called real doing) and also the foundation for deeply meaningful and transformational relationships which will affect the well being of not only those of us here now but also possibly future generations..


This sounds really interesting, but I am having a hard time connecting it to the questions in the OP. I don't understand what you are trying to say... can you explain a bit?



LupaLuna
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11 Oct 2013, 6:30 pm

30K in 3 years. that 10K/year or about 27 post/Day or a little over 1/Hr.



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11 Oct 2013, 9:20 pm

littlebee wrote:
No time to write now, but the fact that you feel you need to be stating so clearly and emphatically--and I think you do need to here--that you are not attacking individuals, rings another kind of bell, an alarm bell.

Thank you for being a person who loves to enquire and question and so begin to discover more and more as you go along the nature of how things work and how people interconnect according to certain principles.. This kind of enquiry is the beginning of greater doing (or what could be called real doing) and also the foundation for deeply meaningful and transformational relationships which will affect the well being of not only those of us here now but also possibly future generations..


On the other hand, coming into a community where people are free to discuss their limitations, trials, and tribulations dealing with autism, as well as the positive elements of same, and telling them that it's repulsive because they spend more time than the OP deems appropriate doing so strikes me as playing directly into societal ableism and negativity about disability.

And it takes a lot of unpacking to take ableism and disability negativity apart, even when talking about one's self.

Plus there's the overall fundamental attribution error which the OP is engaged in, by essentially perceiving what he sees on this forum or on facebook as the entirety of people's lives, without consideration of those lives outside of the context that he has personally encountered.

So, really, this thread is more of the "disability bad" thing that's culturally ingrained and seems more focused on sabotaging autistic people's discussions of autism than it is on anything else. And, well, calling people repulsive for trying to understand themselves is not even remotely helpful.

It doesn't matter if he says he's not attacking individuals, because attacking a group is one of the methods in which societal power and privilege are wielded over marginalized people. An attack on a group of people is no more acceptable and no more polite than an attack on a single person.

The OP's coming here to attack people as a group for discussing autism is sort of like going to a video game forum and attack people for playing video games.



Kaelynn
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11 Oct 2013, 10:57 pm

Northeastern292 wrote:
By no means am I attacking anyone personally, and if anyone sees it this way, I would hope that a moderator locks this topic and fast.

Lately, I've found myself more and more repulsed by other auties and Aspies. In general, I know several, on here and on Facebook who drown their lives in autism. There's more to life than our conditions. Let me paraphrase a (semi-celebrity) crush: Autism doesn't define me, yes, it's part of who I am. But there's more to me than my autism/Asperger's. Yes, I do understand that there are some, even on Facebook, who have it a LOT worse than I have it.

From a Facebook post this morning:

Quote:
just to keep you updated, we've had issues in this group with things being called "creepy" so in the future please try to use another word?


When did "creepy" become another "r" type word? I didn't know what "creepy" was offensive! My challenge to my fellow WPers: find words in the English lexicon that are synonymous for "creepy".

Third: I still don't get how you can have been a member here for a year and have 30,000 posts. Just don't get it.

And lastly: the Âû Facebook Fad: As almost all of you know, Âû is short for the invisible Autism Union (or is it Autism United), which I see as no more than a FAD. I'm all for autism solidarity, but I'm not going to have it tattooed. There is more to my life than having an autism diagnosis: my friends and family, my interests, my passions.

I'm sorry for this rant, but I do need to question the autism community on these things. This (and I STATE THIS CLEARLY) is not an attack on anyone, but more questioning the mentality of our community. Or am I just being totally unfair?


I agree with you! I was convinced that I was the only aspie who put serious effort towards normalcy. Even though I prefer to wear jeans and a T shirt everyday, I dress professionally for school and work. When I get good news, I'd like to flap my hands, but instead I control my impulses. I could have my mother drive me places, therefore having less responsibility. I have many things wrong with my brain that I could say keep me from driving. But I learned ways around it and I have a license and a car; I am 16. All teenage aspies I know do not drive, do not try to improve themselves and have poor hygiene. (I know quite a few, I go to a school for people with autism.)
I completely understand where you are coming from and I agree.



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12 Oct 2013, 12:20 am

Kaelynn wrote:
I agree with you! I was convinced that I was the only aspie who put serious effort towards normalcy. Even though I prefer to wear jeans and a T shirt everyday, I dress professionally for school and work. When I get good news, I'd like to flap my hands, but instead I control my impulses. I could have my mother drive me places, therefore having less responsibility. I have many things wrong with my brain that I could say keep me from driving. But I learned ways around it and I have a license and a car; I am 16. All teenage aspies I know do not drive, do not try to improve themselves and have poor hygiene. (I know quite a few, I go to a school for people with autism.)

I completely understand where you are coming from and I agree.


The problem with posts like these is the assumption that just because one person can do something that others can do it as well. You try to make it sound like not being able to drive is just an excuse or that controlling one's stims is easy or that learning good hygiene is something that one should be able to do or even properly understand without far more explicit explanations.

As one example, I am 44. I can't "control my impulses" to stim because the stimming starts before I realize it's happening. I can't drive because my attempts to learn to drive have come very close to disaster, and I have been told I am not safe to have behind the wheel. It took me another few years past 16 to know that I had "poor hygiene" because essentially no one told me I had poor hygiene.

This is one of the problems I have with threads like this, is the assumption that everyone has the same abilities, the same impairments, the same support, the same resources, the same overall profile. We don't, and complaining about those of us who do not have the same profile you do as if we're making excuses does more harm than good.

Apparently it is repulsive for some autistic people to legitimately have a difficult time with anything. :roll:



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12 Oct 2013, 1:51 am

Kaelynn that's great that you are able to do those things - and I imagine it doesn't come easy to you, you have to work on this stuff.

I think sometimes the problem with others (I suspect because I know it's true of me) - you get to the point where you feel like you're doing that plugging holes with your fingers thing and eventually it's just too many holes and you start becoming exhausted. Especially when you know that the plugging of no individual hole is going to change much or help you much because the enormity of the hole problem taken together is going to get you one way or another. I tend to focus on the NECESSARY stuff and often just forget to do little stuff that any normal person would do. Or sometimes I just say to Heck with it.

Also when they're 16 they have a lot less life experiences and ability to understand hows and whys. I was 19 before I got my license. I was an extremely slow starter, never graduated from high school, but at 52 am finishing a college degree and have supported myself since around my early 30s (but prior to that I had constant problems).

I understand your feelings about them looking like they're not trying and maybe some of them aren't trying as hard as you, but don't give up on them. You never know what their abilities or ambitions are. :D