Do you still believe in the Autistic Community & Culture

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wavefreak58
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23 Dec 2010, 2:46 pm

KenG wrote:
Vector wrote:
2) I think Wrong Planet best serves people who are new to the online autism community.
Agreed, but if so, then where should veterans of the Autistic Community go to?


This is a good question. While new to the autism community, I am already confronting the issues of 'what next?'. I find the conflict within the community disconcerting, but feel some compulsion to become involved in some way.


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Jediscraps
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23 Dec 2010, 2:54 pm

I've been participating in a real live community. I like doing that but even there I can feel like not wanting to talk and feel like an outsider in some ways. It can be nice being around them especially these two people who have been real nice to me. I think it might be the only social thing I've ever wanted to do.



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23 Dec 2010, 3:08 pm

wavefreak58 wrote:
KenG wrote:
Vector wrote:
2) I think Wrong Planet best serves people who are new to the online autism community.
Agreed, but if so, then where should veterans of the Autistic Community go to?


This is a good question. While new to the autism community, I am already confronting the issues of 'what next?'. I find the conflict within the community disconcerting, but feel some compulsion to become involved in some way.


Yeah, good question. More questions might help.

1. What makes WP good for 'newbies' and not so good for 'veterans'?
2. What would a next 'stage' online autism community look like/be structured like/need?


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KenG
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24 Dec 2010, 3:05 pm

Moog wrote:
1. What makes WP good for 'newbies' and not so good for 'veterans'?
In my opinion:
Most discussions on WP these days are very similar to most discussions on WP back in 2006. They may still be very interesting for newbies, but they may be too worn out for veterans.
Moog wrote:
2. What would a next 'stage' online autism community look like/be structured like/need?
Here are some possible directions, for both online and offline advancements:
* Have national and regional online forums. (many countries already have them).
* Have larger chapters of the Autistic Self Advocacy Network, or new chapters, in various locations around the world.
* Have additional autistic-run organisations, in various locations.
* Have more people involved in the organisation of Autreat.
* Have more people involved in the organisation of Autscape.
* Have additional Autistic Community gatherings, similar to Autreat and to Autscape, in various locations.


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LabPet
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24 Dec 2010, 3:25 pm

KenG wrote:
Moog wrote:
1. What makes WP good for 'newbies' and not so good for 'veterans'?
In my opinion:
Most discussions on WP these days are very similar to most discussions on WP back in 2006. They may still be very interesting for newbies, but they may be too worn out for veterans.
Moog wrote:
2. What would a next 'stage' online autism community look like/be structured like/need?
Here are some possible directions, for both online and offline advancements:
* Have national and regional online forums. (many countries already have them).
* Have larger chapters of the Autistic Self Advocacy Network, or new chapters, in various locations around the world.
* Have additional autistic-run organisations, in various locations.
* Have more people involved in the organisation of Autreat.
* Have more people involved in the organisation of Autscape.
* Have additional Autistic Community gatherings, similar to Autreat and to Autscape, in various locations.


I think those are good ideas and feasible. Do you think NAS would be of assistance? Maybe they could provide means to organise these various gatherings.


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theexternvoid
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24 Dec 2010, 4:31 pm

Sorry to sound pessimistic, but I don't want to see something like that. It annoys me when other groups do that. Use the most common on the news now: gay pride. Why is that a point of pride? Would you not be proud were you hetero? Why make that your personal identity, as though it is your core defining characteristic above all your other characteristics, making it the eidos of You? Same thing goes to any hypothetical hetero pride movement, or an aspie pride movement, etc.; none of it makes rational sense to me.

I am me. I'm defined by how I live my life, not whether or not I have Asperger's. I'm a vegetarian, but I'm more comfortable around hunters who share my interest in firearms and can engage in "gun talk" than vegetarians that make their entire self-identity revolve around their diet. If you're an omnivore then you probably know the type of annoying activist vegetarian that I'm talking about...

I've found WP extremely useful for self-discovery. When I joined I had just stumbled upon Asperger's on the Internet by accident, and this place answered so many questions for me. It's given me much clarity in understanding Asperger's and how it relates to me. I'm very thankful for for that. It's more of a resource for me than a community.

I don't consider myself a part of any community. (In fact it's one reason I moved to Amish country, to reside inside a community that would not try to make me a part of that community.) I think by definition you're not going to see aspies do these sorts of things. Being the center of attention in a crowded pride parade surrounded by large crowds of strangers, coming together for large crowded social events...sounds very NT to me! Even if I did want to make Asperger's the center of my life, I don't think that I could enjoy participating any of those things.



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24 Dec 2010, 5:31 pm

The idea that autistic people are asocial and nonautistic people are social is a complete myth. So is the idea that more social autistic people are less autistic. If that were true, then there would not be autistic people of all subtypes who travel from all around the world just to spend a week with other people who understand them. It's much like the myth that cats are asocial.


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theexternvoid
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24 Dec 2010, 7:55 pm

From what I've read of aspies (not sure about other types of autistics) they tend to have anxiety around crowds, even if they do want to be social. Some don't, and some that do are are able to get over that. But even though the asocial presumption is not universally true, it seems to me that the odds are still stacked against getting a large group of aspies to march in a parade, for example.



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24 Dec 2010, 9:38 pm

Wallourdes wrote:
Molecular_Biologist wrote:
Moog wrote:
Delirium wrote:
Basing a culture around a mental disorder seems strange to me. :-/


A lot of us don't call it a disorder.



Then perhaps the reason no "autistic culture" has developed is because it is far more than just a "difference" as some claim.

I would venture to say that their aren't enough highly functioning individuals to create such a culture.

From everything I have seen, except for a lucky few with extraordinary abilities, autism is a disease that severely degrades the quality of life for the vast majority of those it afflicts.


Here you are making a claim AGAIN that autism is a disease while you haven't even replied to my answer in http://www.wrongplanet.net/postxf145872-0-60.html on your reasoning why autism is a disease.

Your more sounding like a fearmonger then a contributer.



Why the hell should I respond to you?

I don't owe you anything.

My point was clear enough and you made a muddled response which I ignored.



ooOoOoOAnaOoOoOoo
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24 Dec 2010, 11:51 pm

anbuend wrote:
The idea that autistic people are asocial and nonautistic people are social is a complete myth. So is the idea that more social autistic people are less autistic. If that were true, then there would not be autistic people of all subtypes who travel from all around the world just to spend a week with other people who understand them. It's much like the myth that cats are asocial.

For some reason, when an autistic person doesn't feel like being social, there's talk of stereotyping and myths. Some autistic people don't feel social and that's reality,



KenG
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25 Dec 2010, 4:54 pm

anbuend wrote:
The idea that autistic people are asocial and nonautistic people are social is a complete myth. So is the idea that more social autistic people are less autistic. If that were true, then there would not be autistic people of all subtypes who travel from all around the world just to spend a week with other people who understand them.
Exactly.
Throughout my involvement with the autistic community, I am guided by the following lines, from Jim Sinclair's "History of ANI":
Jim Sinclair (in 'History of ANI') wrote:
Donna's description of the experience reads in part:

Despite thousands of miles, our 'our world' concepts, strategies, and experiences even came down to having created the same made-up words to describe them. Together we felt like a lost tribe. 'Normal' is to be in the company of one like one's self.
[]
We all had a sense of belonging, of being understood, of being normal . . . all the things we could not get from others in general. It was so sad to have to leave. 'Why can't we all live together?' we had each asked at some point or other. (p. 186)

My own recollection of this meeting is of feeling that, after a life spent among aliens, I had met someone who came from the same planet as me. We understood each other. At one point I overheard Donna talking on the phone to someone associated with her book tour. Apparently the caller had asked her something about how the visit was going. I heard Donna's answer: "We don't get a lot of cooking done, but we speak the same language."

It was an amazing and powerful experience to be able to communicate with someone in my own language. I had sometimes been able to establish meaningful communication with people before, but it always involved my having to learn the other person's language and do constant laborious translating. (Sinclair, 1988) Here, with people who shared my language, meaning flowed freely and easily.

The complete article is here:
http://www.autreat.com/History_of_ANI.html
It is a highly recommended article for all members of the Autistic Community.


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anbuend
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25 Dec 2010, 6:11 pm

ooOoOoOAnaOoOoOoo wrote:
anbuend wrote:
The idea that autistic people are asocial and nonautistic people are social is a complete myth. So is the idea that more social autistic people are less autistic. If that were true, then there would not be autistic people of all subtypes who travel from all around the world just to spend a week with other people who understand them. It's much like the myth that cats are asocial.


For some reason, when an autistic person doesn't feel like being social, there's talk of stereotyping and myths. Some autistic people don't feel social and that's reality,


I'm on the fairly asocial end of autistic people, I don't consider that "stereotyping". What's stereotyping is when people say things like "I think by definition you're not going to see aspies do these sorts of things. Being the center of attention in a crowded pride parade surrounded by large crowds of strangers, coming together for large crowded social events...sounds very NT to me!" and other stereotypes about autistic people in general as well as nonautistic people in general (who can easily be as asocial as the most asocial autistic person).


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25 Dec 2010, 6:51 pm

anbuend wrote:
ooOoOoOAnaOoOoOoo wrote:
anbuend wrote:
The idea that autistic people are asocial and nonautistic people are social is a complete myth. So is the idea that more social autistic people are less autistic. If that were true, then there would not be autistic people of all subtypes who travel from all around the world just to spend a week with other people who understand them. It's much like the myth that cats are asocial.


For some reason, when an autistic person doesn't feel like being social, there's talk of stereotyping and myths. Some autistic people don't feel social and that's reality,


I'm on the fairly asocial end of autistic people, I don't consider that "stereotyping". What's stereotyping is when people say things like "I think by definition you're not going to see aspies do these sorts of things. Being the center of attention in a crowded pride parade surrounded by large crowds of strangers, coming together for large crowded social events...sounds very NT to me!" and other stereotypes about autistic people in general as well as nonautistic people in general (who can easily be as asocial as the most asocial autistic person).


I do agree.....with you both. Not to be contrary.

Certainly any Autist is not the social butterly who needs showy parades in crowds - of course not. But we are human beings and, by definition, human beings need contact with others. Only a scant few individuals can live as hermits! Most Autists are kind and sensitive beings with a great capacity for love. True that I lack 'empathy,' but I am highly compassionate and even sympathetic (yes, that's different from empathy). Indeed, all of us are posting on a community right now. I have friends (not many) and I believe in friendship and love. Further, I want to someday be married to a man and I am a romantic/sexual being too. Autists do marry and have families.

Anyhow, asocial is another issue entirely. I really appreciate the link KenG posted. Although I am in a professional position as a PhD student, and therefore have a need for discretion, I am proud to be an Aspie. It's my beautiful mind.


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KenG
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27 Dec 2010, 4:58 pm

Vector wrote:
3) The communicative difficulties of people with autism make organizing and socializing especially challenging for us.
True. It still reminds me of Jim Sinclair's, "History of ANI", though:
Jim Sinclair (in 'History of ANI') wrote:
The American Heritage(r) Dictionary of the English Language (2000) defines "community" in part as: A group of people having common interests," "A group viewed as forming a distinct segment of society," "Similarity or identity" and "Sharing, participation, and fellowship." Its entries for "culture" include "The totality of socially transmitted behavior patterns, arts, beliefs, institutions, and all other products of human work and thought," "These patterns, traits, and products considered as the expression of a particular period, class, community, or population," and "The predominating attitudes and behavior that characterize the functioning of a group or organization."

Nearly all the operative terms in those definitions would seem to be at odds with the traditional view of autism as profound impairment in social functioning. Autistic people are seen as lacking the ability to share common interests with others, disconnected from social participation and fellowship, and inaccessible to social transmission of behaviors and attitudes. How, then, can we speak of autistic community and autistic culture?

This article will describe how one particular group of autistic people joined together on the basis of common interests, and grew into a community. Along the way I will tell you a bit about the culture that has developed within that community. It is my hope that through this introduction to my community, you will begin to reconsider many of the assumptions you may have about autistic social characteristics. Is it always correct to view differences between the behavior of autistics and NTs as "symptoms" of some "disorder" in autistic people? Is it necessarily helpful to respond to such differences by trying to teach autistic people to emulate NT social behaviors so they can "fit in" with NT culture? What alternatives might there be for addressing social difficulties between autistic and NT people? These are some questions you should ask yourself as you read this article.

A disclaimer: I can only report about the culture that has developed within the Autism Network International community. Other autistic communities may have very different cultures. To the best of my knowledge, ANI was the first autistic community to be created naturalistically by autistic people, and it remains the largest autistic-run organization to have regular physical gatherings of autistic people.

The complete "History of ANI" is here:
http://www.autreat.com/History_of_ANI.html


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28 Dec 2010, 3:10 pm

Vector wrote:
4) The emotionally charged nature of issues relating to autism makes conversation exhausting and causes people who become leaders to burn out quickly.
Sounds reasonable to me, but many activists within the autistic community have been active for years:
Jim Sinclair has been coordinating Autreat's Planning Committee every year since 1996.
Some other members of Autreat's Planning Committee have also been active in the committee for many years.
Some members of the Autscape Management Committee have been active in the committee since 2005.
Ari Ne'eman has been the president of the Autistic Self Advocacy Network since 2006.
Many other activists within the Autistic Self Advocacy Network have been active in the network at least since 2007.
Some activists in autistic-run organizations in Germany, Israel and Finland (to name but a few countries) have been active at least since 2005.

To me, it seems there is a small core-group of activists who remain active throughout the years, but while WrongPlanet's population grew substantially over the last few years, the core-group of activists doesn't seem to grow at all.
Perhaps it is indeed a matter of time. I wouldn't be surprised if some of the newer members of WrongPlanet haven't even heard about Autreat, Autscape, the Autistic Self Advocacy Network, the London Autistic Rights Movement, etc.


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28 Dec 2010, 5:18 pm

Well regarding the idea of people with AS, HFA (or some other form of autism, sorry the bombardment of alphabet soup is sometimes too much for me being asocial, I know that the stereotype of the person with autism is that they are asocial. But I would say that stereotypes are very rarely encountered. Even Mr "average" is unlikely to be found as for many human parameters the SD is large.

I would like to say that I agree with LabPet that few autists are hermits who have no desire to have social interactions. If we use a little of the terminology of the transactional analysis brigade we can define a social interaction as being a stroke. I know for a fact that some people need and want more strokes per year than others. I suspect that if a decent survey was done of people with AS that their average number of strokes required per year would be lower than the average NT's number of required strokes. Also I suspect that the social thermostat in the average autist is set differently to the typical NT. All people have a comfort zone for social interactions, at one end they have a area outside their comfort zone where they need social interactions (strokes) while at the other end they need solitude (no more stroking).

I will admit that I do have enjoyable "social interactions", I would like to say that much of what the transactional analysis experts have said on some subjects (including autism) is wrong. At least one person from the TA camp seems to have endorsed the "refrigerator mother" hypothesis, a hypothesis which I view as equally wrong and equally distasteful. Thomas Harris claims that the autist is in a state of "I am not OK, you are not OK" as a result of having too few strokes as a child. He also claimed that this caused the child to be in a world of their own and thus have autism.


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