Do you still believe in the Autistic Community & Culture

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j0sh
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21 Feb 2011, 11:49 am

anbuend wrote:
I've always found it amusing watching autistic people socialize online by saying how nonsocial they are.


Hehe, me too. :-)

And for the record, participating in the AS support group I attend is one of the highlights of my week. I find it refreshing to be in the company of people that don't live in their image and are just themselves.

As an INTJ, I fit the stereotype of constantly asking the question "is this working" and applied that question to existing community models. I question if there are any that fit the needs of the autistic community, or if we should create our own model.



KenG
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23 Feb 2011, 3:27 pm

anbuend wrote:
For many autistic people (and by no means is this related to what most call functioning level), the desire to socialize is very real, they just lack opportunities to socialize with people who understand them and will not judge them. It's not that being social is an "NT thing", just that nonautistic people get far more chances at socializing in environments that are good for them to socialize in.

This is why, before there were any big social meetups of autistic people, individual autistic people would spend huge amounts of money and effort flying and driving thousands of miles just to meet each other. This is also why people still fly and drive those distances for the big social gatherings that now exist. And these are not and have never been just the "least autistic" people who do things like this, in fact most of the people who founded the original events were (by typical standards that I understand but don't share) far "more autistic" than many of the people who say they can't understand why autistic people would ever want to do something like socialize.
Exactly so.
In the early years of the online autistic community, most participants seemed very autistic and very friendly. Almost everybody expressed wishes to visit each other and to attend autistic gatherings.
Nowadays, the online autistic community is huge, yet the number of online participants who express wishes to visit each other and to attend autistic gatherings has increased only slightly.


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KenG
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26 Feb 2011, 5:31 pm

anbuend wrote:
(I actually think more nonsocial autistic people may be being diagnosed now than back then. Because back then most diagnoses were just based on appearance which is often wrong. These days many diagnoses are based on people identifying with the nonsocial stereotype that such appearances evoke in people.)
This seems true to me.


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KenG
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27 Feb 2011, 3:46 pm

LabPet wrote:
I do sense a connection amongst all ASD individuals; I'm an Aspie and the Wrong Planet is such a boon. So many articulate individuals - we are a collective culture.

In all sincerity, I've regarded the Culture of Autism as a collective, quite the borg cube as a collective (honestly, I do not mean this facetiously!) and we each bring our own perspective to a greater organisation: our community. Many Aspies are so very successful and productive with so much potential. As a culture, we need to share this with all others.
I don't understand the borg cube analogy. Other than that, the above is well articulated and true.


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28 Feb 2011, 8:13 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.
True, as usual.


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mikeseagle
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28 Feb 2011, 9:08 pm

KenG wrote:
When I first discovered the autistic community and culture, back in the late 1990's, I had high hopes for its future.
I envisioned a reality in which millions of autistics from around the world are participating in autistic culture events around the world.
For example:
I envisioned national autistic self-advocacy groups who have hundreds of members in each of their local chapters.
I envisioned autistic musicians forming bands together and going on tours together.
I envisioned autistic painters opening galleries together and doing group exhibitions together.
I envisioned international autistic gatherings, such as Autreat & Autscape, being attended by hundreds of participants.
I envisioned local autistic groups, with dozens of participants, holding events together.
I envisioned Autistic Pride Day events all over the world being attended by hundreds of participants.
Etc.

Nowadays, I am becoming a bit skeptical about this.
WP only had 2,000 members when I joined it, and nowadays it has 43,000 members, but it seems the discussions are revolving around the same subjects again and again, year after year.
I was expecting WP to serve as an excellent platform for planning various offline activities, but when we did the European WP gathering, in 2009, we only managed to bring in 8 participants...
Nowadays, I am frequenting WP less and less, because I can't find here enough discussions which actually promote the advancement of Autistic Culture in real life.

How about you? Are you still optimistic about the future of the Autistic Community & Culture?
Do you think the hopes I have listed above will soon become realities?
Or are you also starting to share my skepticism about the future of the Autistic Community and Culture?


I hope I do not offend anyone by jumping on the end of this long thread and interrupting the flow of the thread, but I did want to give my perspective on it.

Even though I'm new here I do have hope that the above things will happen on their own schedule if we are persistent not some imposed schedule. I grew up in the darkness where no one knew that I was screaming on the inside because of the frustration I felt from not being able to conform to the NT world. This frustration caused problems with gatherings, conventions and other social gatherings that I did everything possible to avoid them. Now that I am in the light with participating on this web site, the idea of going to a convention or other gathering even with other autistic people would scare the hell out of me. I would love the idea of doing that but the nightmares of the dark still haunt me strongly.

Maybe one day, people like me will participate more as we overcome our past fears. That slowly over time numbers at conventions will increase slowly but steadily. Especially when the younger generation who are getting diagnosis early, learning coping mechanisms and therefore will not have the same emotional baggage as people like me. Those people will move things forward when they can express themselves

The fact of the matter that maybe your goals, KenG, will not happen in your lifetime. Great changes in human history sometimes doesn't happen in your lifetime. Does that mean you should give up on it? No. Future generations will be thankful for the work you did today. I look forward to the day that a person with autism can spend their life in the light, be accepted by themselves and society for who they are and not try to make them into someone they are not. That they communicate in a way that works for them and not just the NT form of communication.

Anyway I hope I made some kind of sense here, I feel like my thoughts are a little disjointed because I do feel strongly about it. I guess in the end what I'm saying, KenG, is not to give up because progress is not what you think it is. There is a progress, its just at a snails pace.



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02 Mar 2011, 2:09 pm

anbuend wrote:
Yeah. Worse, I can't fly and Autreat has no train access. That means I have to rent a wheelchair van. Which is ultra-expensive and only worked one year when my agency had not spent all my funds by the end of the fiscal year.
Autreat 2011 will be in Johnstown, Pennsylvania: http://www.wrongplanet.net/postt153612.html
Johnstown has the advantage of being more accessible by major highways, and has daily rail service.

Travel information is at:
http://members.bellatlantic.net/autreattravel/
or
http://tinyurl.com/autreattravel

While the closest major city for air travel is Pittsburgh, Johnstown's rail connection with Pittsburgh, Philadelphia and
NYC is such that people arriving by public transportation may find it easier to schedule through Philadelphia and take the
train from there:

http://members.bellatlantic.net/autreat ... stown.html
or
http://tinyurl.com/flytorailtojohnstown

It is also possible to connect by train from Southwest Airlines' (WN) Baltimore hub (BWI airport).

=========================================
Here is the full set of travel pages:
=========================================

- INDEX -
http://members.bellatlantic.net/autreattravel/
or
http://tinyurl.com/autreattravel
or
http://preview.tinyurl.com/autreattravel

- FLY TO JOHNSTOWN (JST) -
http://members.bellatlantic.net/autreat ... stown.html
or
http://tinyurl.com/flytojohnstown

- RAIL TO JOHNSTOWN -
http://members.bellatlantic.net/autreat ... stown.html
or
http://tinyurl.com/railtojohnstown

- FLY TO RAIL TO JOHNSTOWN -
http://members.bellatlantic.net/autreat ... stown.html
or
http://tinyurl.com/flytorailtojohnstown

- DRIVE TO JOHNSTOWN -
http://members.bellatlantic.net/autreat ... stown.html
or
http://tinyurl.com/drivingtoautreat

- FLY AND DRIVE TO JOHNSTOWN -
http://members.bellatlantic.net/autreat ... stown.html
or
http://tinyurl.com/flyanddrivetojohnstown

- "RIDE THE DOG" TO JOHNSTOWN -
http://members.bellatlantic.net/autreat ... stown.html
or
http://tinyurl.com/takethedogtojohnstown

- ACCESSIBLE TRANSPORTATION INFO -
http://members.bellatlantic.net/autreat ... sible.html
or
http://tinyurl.com/autreataccessibletravel

- INTERNATIONAL TRAVEL INFO -
http://members.verizon.net/~autreattrav ... ional.html
or
http://tinyurl.com/autreattravelinternational


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wavefreak58
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02 Mar 2011, 2:36 pm

Too bad there isn't a weekend calendar of events for those of us that can't get away during the week.


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02 Mar 2011, 6:54 pm

I have been watching this thread now for weeks and weeks and feel like I can articulate a bit how I feel now on this matter.

I have only been recently diagnosed and before that time you could not get me to care RE autism or about any sort of community. I was functioning just fine (better than most NTs). I fail to see how you think that you can reach out to undiagnosed or even include them in your numbers.

While his beliefs are wildly unpopular on here I have to agree with Molecular Biologist (I think that is his name) when he says that you get so few people traveling long distance to meet up because of the fact that MOST of the people with Autism are (in fact) so crippled by the disorder that they cannot make such a trip.

As soon as I was diagnose (and had picked myself off the floor) I began to seek out organizations that I could participate in to learn of the disorder and perhaps to help. I got connected with the two autistic groups here in the Portland area for adults. I went with an expectation that I might find "like" people but what I found was largely not "like" people. Very few of the adults there were employed and those who were were also largely under employed. Over the weeks, I got to talking to them and their stories are tragic. I got a "first-hand" glimpse of this disorder and how crappy it really is to so many people and I got a sense of gratitude for having as much faculty as I do despite my ASD.

During this same time, I began to moderate for our local ASAN group and I established an ASD special group for BBBS as well as started an ASD support group at my company. My eyes keep telling me the same thing. Unless you happened to be very blessed, ASD will render you unable to support yourself in any traditional way which will make it impossible (or nearly so) to attend a function such as Autscape.

Now on to the people (the very small percentage) who can afford the 1K or so to make such a trip.... During my past weeks of research, I too, had some ideas about getting the capable autisitc people together for some sort of "common" good... So I researched what existed already and we have already some pretty amazing options....

If I was going to make a trip to an autistic sort of event, I would definately consider joining forces with this group...

http://campaign.r20.constantcontact.com ... ER.BLOCK10

As you can see they have an amazing board and resources and also have a conference with PhD speaker panels and agendas already set up.

http://www.ariconference.com/

Whether or not you believe that Autism is treatable/curable or whatever, you have to admit that their lineup and especially the track on "adult services" is pretty amazing.

In contrast to the one you are forming which has yet to post an agenda even.

This sounds somewhat negative I know, but it seems to me that you are shooting at stars that are out and reinventing wheels here.

The whole "social" thing and this conference is very "meh" to me. I get more than enough ASD talk here on this board and in the two local groups to last me a life-time. Most of our discussion (on this board as well as there) is negative as it pertains to Autism. The crap this disorder places upon us is pretty daunting still to me as I wade through post after post of mental illness (comorbidity) and disabilities and social issues. I prefer to spend my social time absorbed in my special interests instead as that has a more positive spin to it.



KenG
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04 Mar 2011, 4:11 pm

kfisherx wrote:
I fail to see how you think that you can reach out to undiagnosed or even include them in your numbers.
I reach out to undiagnosed by publishing articles about the Autistic Community in mainstream media.
(undiagnosed people read such articles and start to understand how varied the Autism Spectrum is. After they read enough, they self-diagnose as autistic. Later, they go and get formal diagnoses, if they so wish).
kfisherx wrote:
During this same time, I began to moderate for our local ASAN group
ASAN has been present at Autreat since 2007.
At Autreat 2007, ASAN's president, Ari Ne'eman, presented about Neurodiversity and the Autistic Community:
http://www.autreat.com/aut07presentations.html
At that same Autreat, ASAN's vice president, Scott Michael Robertson, presented about Information Technology & The Autistic Culture. (his presentation's abstract is in the same link as Ari's presentation's abstract).
At Autreat 2008, Ari Ne'eman presented about "Public Policy and Social Change Advocacy for the Autistic Self Advocate Community", while Scott Michael Robertson presented about Emerging Partnerships Between Autistic Self-Advocates & Researchers in Academia:
http://www.autreat.com/aut08presentations.html
At Autreat 2009, Ari presented about "Tensions Within the Disability Community", Scott presented about "Emerging Autism Research and Its Impact on the Autistic and Allied Community", and Paula (ASAN's Northern Virginia's chapter director) presented about "Experiences at Interagency Autism Coordinating Meetings":
http://www.autreat.com/aut09presentations.html
At Autreat 2010, Ari presented about "Common Forms of Prejudice Against Autistics", Scott presented about "Countering Bullying and Cyberbullying", and Paula presented about "Effective Local Advocacy":
http://www.autreat.com/aut10presentations.html
kfisherx wrote:
Unless you happened to be very blessed, ASD will render you unable to support yourself in any traditional way which will make it impossible (or nearly so) to attend a function such as Autscape.
Autscape is in the UK. Autreat is in America.
kfisherx wrote:
During my past weeks of research, I too, had some ideas about getting the capable autisitc people together for some sort of "common" good... So I researched what existed already and we have already some pretty amazing options....

If I was going to make a trip to an autistic sort of event, I would definately consider joining forces with this group...

http://campaign.r20.constantcontact.com ... ER.BLOCK10

As you can see they have an amazing board and resources and also have a conference with PhD speaker panels and agendas already set up.

http://www.ariconference.com/

Whether or not you believe that Autism is treatable/curable or whatever, you have to admit that their lineup and especially the track on "adult services" is pretty amazing.

In contrast to the one you are forming which has yet to post an agenda even.
This seems interesting. I see Valerie Paradiz is a part of this. She has written about Autreat in her book.
I see Zosia Zaks is also a part of this. She has presented at Autreat 2003: http://www.autreat.com/aut03-workshops.html
At Autreat 2007: http://www.autreat.com/aut07presentations.html
And at Autreat 2009: http://www.autreat.com/aut09presentations.html

Autreat 2011's call for proposals is to be published soon. You can submit a proposal, if you so wish.
You can see abstracts of past Autreat presentations (from 1996 onwards) over here:
http://www.autreat.com/past-workshops.htm

Autscape 2011's list of presentation is to be published soon.
You can see abstracts of past Autscape presentations (from 2005 onwards) over here:
http://www.autscape.org/ (click the 'Archive Area').


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KenG
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06 Mar 2011, 4:04 pm

kfisherx wrote:
During my past weeks of research, I too, had some ideas about getting the capable autisitc people together for some sort of "common" good...
Oh, you may want to read Jim Sinclair's "AUTISM NETWORK INTERNATIONAL: THE DEVELOPMENT OF A COMMUNITY AND ITS CULTURE":
http://www.autreat.com/History_of_ANI.html

It explains a lot about the history of the autistic community and of the autistic culture.
What bothers me is not the history of the autistic community, which I know a lot of, but the future of the autistic community.
I'm not sure where we are heading nowadays.


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06 Mar 2011, 4:06 pm

I didn't know there was an Autistic Culture.


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AC
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06 Mar 2011, 6:22 pm

Well, to me 'Autistic Community' is something of an oxymoron, since the core characteristic of Autism, according to some psychologists including Kanner and Asperger who coined the term Autism. is the desire to be alone. We're not good candidates for any community and I'm not surprised that only 8 people showed up.

But then there is Wrong Planet, which still amazes me. It is a kind of community, maybe the only kind that we can participate in.

AC



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06 Mar 2011, 6:32 pm

AC wrote:
Well, to me 'Autistic Community' is something of an oxymoron, since the core characteristic of Autism, according to some psychologists including Kanner and Asperger who coined the term Autism. is the desire to be alone. We're not good candidates for any community and I'm not surprised that only 8 people showed up.

But then there is Wrong Planet, which still amazes me. It is a kind of community, maybe the only kind that we can participate in.

AC


Agreed. It's like setting up a matchmaking/dating service for multiple divorcees and being surprised when most of the matches end up working out poorly.

I find the idea of a culture based around being socially inept to be depressing. I'm honestly not surprised that it hasn't been the roaring success that Ken has hoped it would be.


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08 Mar 2011, 10:30 am

AC wrote:
Well, to me 'Autistic Community' is something of an oxymoron
Then join Autreat's mailing list, over here:
http://health.groups.yahoo.com/group/autreatinfo/
You will witness a strong sense of community among the members of this list.
After reading this list for a while, you will surely stop regarding 'Autistic Community' as an oxymoron.


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10 Mar 2011, 7:44 am

KenG wrote:
AC wrote:
Well, to me 'Autistic Community' is something of an oxymoron
Then join Autreat's mailing list, over here:
http://health.groups.yahoo.com/group/autreatinfo/
You will witness a strong sense of community among the members of this list.
After reading this list for a while, you will surely stop regarding 'Autistic Community' as an oxymoron.
Or look at photos like this one, which also demonstrate strong solidarity within the Autistic Community:
Image


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