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sly279
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30 May 2019, 11:59 pm

O.o


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Mona Pereth
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31 May 2019, 1:29 am

sly279 wrote:
O.o

I'm confused. Your point is?


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auntblabby
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31 May 2019, 2:54 am

^^^he has posted in other threads about the difficulties in finding suitable meetups.



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01 Jun 2019, 1:46 pm

Mona Pereth wrote:
Later, I'll be posting some thoughts in this thread about what other kinds of organizations I think the autistic community needs, and some thoughts on how they could perhaps be built.
Personally, I think the Autistic community needs to continue building organizations such as these:
* The Autistic Self Advocacy Network:
https://autisticadvocacy.org/
* Association for Autistic Community:
http://autisticcommunity.org/
* Autistic Women & Nonbinary Network:
https://awnnetwork.org/
* Ocate Cliffs:
http://www.divergentlabs.org/ocatecliffs/
* Autistic UK:
https://autisticuk.org/
* Autistic Inclusive Meets:
https://autisticinclusivemeets.org/
* AutAngel:
https://www.autangel.org.uk/
* Autistic Pride Reading:
http://www.autisticpridereading.co.uk/
* AUsome Ireland:
https://www.facebook.com/ausomecork/
* Me.Decoded:
https://www.medecoded.com/
* Autscape:
http://www.autscape.org/
Etc.


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01 Jun 2019, 5:30 pm

Regarding some of the organizations KenG listed:

1) The Autistic Self Advocacy Network (U.S.A.) and what appears to be another similar organization across the Atlantic: Autistic UK:

In order for an advocacy group to thrive, it needs an already-existing larger community to draw its support from. As far as I can tell, the NYC chapter of ASAN seems to have withered due to being cut off from the larger local autistic community. There isn't, for example, an ASAN member who attends local support group meetings and makes announcements there.

It would be desirable to have more activist groups like ASAN, but I think we first need to focus on building other kinds of organizations and somehow facilitate greater collaboration amongst those organizations.

2) Conferences such as Autspace (run by the Association for Autistic Community in Michigan, in the U.S.A.) and Autscape (in the U.K.):

Yes it would sure be nice to have similar conferences in other places. I wish there were one in the NYC area.

Historically, both of the above conferences are modeled on Autreat, run by Autism Network International, which, alas, seems to be inactive these days.

3) Ocate Cliffs:

Yep we certainly need more autistic-friendly work places. Lots more. See my comments about the above page in the following new thread: Autistic-friendly workplaces.

4) Autistic Inclusive Meets - a U.K. group that serves a variety of purposes including support, social, and advocacy, both for autistic adults and for families with autistic children:

It's good to be able to integrate all these different activities under one organization. But, for many of us, it might be easier to create multiple distinct single-purpose organizations and have them coordinate with each other.

5) AutAngel - a U.K.-based foundation that supports various projects run by and for autistic people:

It would sure be nice if, one of these days, some rich autistic people here in the U.S.A. were to decide to do something similar. In the meantime, the rest of us are going to have to come up with things we can do on a shoestring budget.


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


Mona Pereth
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02 Jun 2019, 6:51 am

I found the Meetup group and a relevant Wrong Planet thread for the Seattle Square Pegs group. Judging by the Wrong Planet thread, 4 Years of Square Pegs (Seattle Meetup), posted in April 2018, the group has apparently been around continuously since 2008. Very good for them! Judging by the Meetup site, they apparently still have some satellite groups in other cities around Washington State as well.


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


auntblabby
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02 Jun 2019, 6:54 am

Mona Pereth wrote:
I found the Meetup group and a relevant Wrong Planet thread for the Seattle Square Pegs group. Judging by the Wrong Planet thread, 4 Years of Square Pegs (Seattle Meetup), posted in April 2018, the group has apparently been around continuously since 2008. Very good for them! Judging by the Meetup site, they apparently still have some satellite groups in other cities around Washington State as well.

unfortunately a lot has changed for the worse since 2012, at least some of the splinter groups have gone by the wayside including the olympia one i useta belong to. there was a tacoma one that popped up a year or two ago but i believe it dissolved also.



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02 Jun 2019, 11:51 am

auntblabby wrote:
unfortunately a lot has changed for the worse since 2012, at least some of the splinter groups have gone by the wayside including the olympia one i useta belong to. there was a tacoma one that popped up a year or two ago but i believe it dissolved also.

Looks like the Tacoma group has come back from the dead. The Square Pegs Meetup site has an annoucement of a Tacoma group meeting on Wednesday, June 5, 2019.

Anyhow, my previous message contained an error: The Wrong Planet thread about Square Pegs was started in 2012, not 2018.


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


Mona Pereth
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02 Jun 2019, 2:20 pm

Other kinds of groups I think should be built:

1) Groups for autistic and autistic-like people in particular professions or job categories.
2) Groups for autistic and autistic-like people with particular hobbies.
3) Local support groups with the additional aim of helping members acquire what I call autistic-friendly social skills.

Below are more details on each of the above three categories:

1) Groups for autistic and autistic-like people in particular professions or job categories, or who aspire to same. For example:

(a) A group of programmers and aspiring programmers.
(b) A group for people who work, or want to work, in health-related professions.
(c) A group for people who work, or want to work, in civil service.

The existence of some of these groups would make it easier for Autistic-friendly workplaces to recruit the kinds of workers they are looking for, and would thereby also make it easier for the groups' members to find work in autistic-friendly workplaces. The groups could even facilitate the creation of some autistic-friendly workplaces in the first place.

The proposed groups could also function as a support network for those members who have, or are seeking, jobs in traditional NT-dominated workplaces as well. In some cases (e.g. the group for civil service workers), the groups could collaborate with any disability-related support services offered by relevant labor unions, and/or could perhaps aid labor unions in the creation of said services.

2) Groups for autistic and autistic-like people with particular hobbies. These would be the best places for many of us to make friends. In addition to holding their own events, these groups could organize excursions to larger, NT-dominated gatherings as well, helping us to feel more comfortable in the latter, and in some cases asking for accommodations.

3) Local support groups with the additional aim of helping members acquire the autistic-friendly social skills that will help us continue to get along with each other and help minimize potential infighting within all the other kinds of groups I've proposed (and in all the other groups that already exist in the autistic community). These skills include autistic-friendly versions of:

a) Assertiveness (without being aggressive)
b) Active listening.
c) Giving and receiving constructive criticism.
d) Conflict resolution.

It would be nice to have formal, expert-led group trainings in these skills. But, in the absence of funding for same, it seems to me that groups can learn these skills on a self-help basis using tutorials and role-playing exercises that can be found on the web (and ignoring aspects that are not autistic-friendly, such as the stuff about eye contact).

In my opinion, many of us are capable of learning most of these particular skills without the help of therapists or other experts (whereas other kinds of "social skills" are much harder for most of us to learn and practice without the help of therapists/experts, if indeed we are capable of acquiring them at all). I think many of us can learn autistic-friendly social skills on our own, and with each other, as part of the process of building our own community.


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


auntblabby
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02 Jun 2019, 10:45 pm

if only the tacoma one had more practical hours for me [weekends during the day] i would be able to attend it.



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20 Jun 2019, 10:44 am

Here, in the thread "Just be friendly.":

Mona Pereth wrote:
It's kinda hard to have "good family values" apart from a larger sense of community that your family fits into.

Church or another religious body can fill that role for religious people. Nonreligious people need something else to fill that role -- a need that many people in the West don't even recognize, or have no idea how to fill even if they do recognize it.

Mainstream modern mass culture doesn't cut it. It's too superficial, and it's not something the vast majority of people can participate in directly. And it's not a stabilizing influence even on the people who CAN participate directly -- the stars -- who, if anything, have an incentive to have endless drama in their lives, as a way to keep themselves in the news.

There are organizations intended to fill a church-like role for atheists: the Ethical Culture Society, the Sunday Assembly, and various organizations with the word "atheist" or "humanist"/"humanism" in their names. The vast majority of atheists do not feel drawn to participate in these organizations, however.

Another way to fill that role is participation in a subculture of people who face common challenges. Thus the autistic community, if it were to become much better organized, could fill that role to at least some extent. Only problem is, due to its lopsided male-to-female ratio, it wouldn't, by itself, be very helpful to the men in finding partners.

(What MIGHT work, as an indirect way to bring SOME autistic men together with a pool of available women, might be for someone to launch a support organization for single and divorced PARENTS of autistic children and recruit autistic adults to work as volunteers in fund-raising events, etc. The single and divorced parents who join such an organization would, in all likelihood, be mostly women. Of course the only men who could appeal to these women would be men who have steady jobs and an ability/willingness to help care for children.)

In the last paragraph above, I mentioned one more of the many kinds of groups I think our community needs. In the remainder of that post I discussed a more general kind of benefit that a community/subculture can provide, in addition to the many other benefits mentioned earlier.


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


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01 Aug 2019, 8:24 am

Several years ago, I regularly taught a two day job skills seminar to refugees in my area. I was a volunteer with our local refugee and immigration organization here in my city. It was popular and I think successful. The organization is still doing my seminar. :)

I made a similar seminar for autistic people a couple years ago. It had three subjects: job readiness, college readiness, and relationships. I was going to teach them with an aspie girl who was going to college here. It’s a long story why it didn’t happen, but it didn’t happen. I’m being honest it was probably a good part of why I stopped wanting to work in autism. Such a simple, useful thing and no one would do it. Lots of people here on WP, IMPORTANT people, helped me put the material together, and I feel their effort was wasted. It still bothers me.

To do something like what you’re talking about, you need focused, clear direction and activities to get people to commit. And it has to be easy for them. It is a mammoth effort for many autistics to go do something like a group at all, so you can’t give them reason for it to be “too much trouble”. Make it enticing, fun, easy. Once you have a few good people participating, that will get more.



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01 Aug 2019, 11:22 am

SocOfAutism wrote:
I made a similar seminar for autistic people a couple years ago. It had three subjects: job readiness, college readiness, and relationships. I was going to teach them with an aspie girl who was going to college here. It’s a long story why it didn’t happen, but it didn’t happen.

I'd appreciate it very much if you could give us at least the general gist of why it didn't happen. For example, were you unable to find a venue? Did local autism-related organizations refuse to mention you in their newsletter, or did local therapists refuse to refer their clients? Or did everything go as planned until the last minute, but then nobody showed up? Or did you try to get a local autism-related organization interested in sponsoring your event, but they refused for some bureaucratic reason, like requiring that all their events be led by licensed psychotherapists or social workers?

SocOfAutism wrote:
I’m being honest it was probably a good part of why I stopped wanting to work in autism. Such a simple, useful thing and no one would do it. Lots of people here on WP, IMPORTANT people, helped me put the material together, and I feel their effort was wasted. It still bothers me.

The autism community (meaning not just the autistic community, but the larger community of mostly parents and professionals) seems to have some weird politics and lack of communication between different sectors.

SocOfAutism wrote:
To do something like what you’re talking about, you need focused, clear direction and activities to get people to commit. And it has to be easy for them. It is a mammoth effort for many autistics to go do something like a group at all, so you can’t give them reason for it to be “too much trouble”.

This is the reason why we need neighborhood-based support groups -- to make it easy to get to.

Also I think many of the organizations I've proposed will need to be primarily online -- but, at the same time, group people by locale and/or by profession / occupation / career goal, rather than being the sort of online community that (like WP) brings people together from all over the world.


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.


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02 Aug 2019, 11:47 am

Hi Mona!

There were a few problems. I was having problems finding a venue that people could reasonably get to. Some people involved were college people and I anticipated that we would have many college aged people going, but somehow colleges did not want to give up a room. I was down to begging local churches, but I was getting a flat no from some of the bigger cities I wanted to target.

The autism organizations around here wanted nothing to do with me. I do not have any “credentials” in education or childhood autism “therapy” and so that meant we were not on the same team. Autistic adults as a sociological population does not really exist in their world. I knew from grad school that my view of autistics as being equal to non-autistics was not cool to their sort, so I played that down, but I guess they saw through me. I think I was saying things like “differently abled” and “strength based” and so on. The secret handshake words they seemed to be looking for were things like “independence goals” and “quality of life”. You know, as if you guys are all drooling in a corner, looking to be released from your ice fortresses.

One of those places I went to had a teen boy who had sensory issues and didn’t like to touch doorknobs (smart kid-they are filthy). No one was allowed to open a door for him, so he would pace back and forth, waiting for someone else to go through so he could dart after them without touching anything. Why the h*ll didn’t someone just give this kid some Lysol to spray things with? I mean, come on. Great schooling. This is what they were doing with his time. HIGH SCHOOL age. Give him a practical solution and move on so the kid can go to college or get a job.

What I imagine is that they were thinking that I would sabotage young people with my ideas of diverting focus from acting normal to developing their interests and talents. Just working around the things that are problems for society. Again, I didn’t tell them my radical ideas, but I think they knew. They could tell I didn’t feel sorry for autistics. So if you are dealing with this NT parents and teachers crowd, I would say make an effort to represent autism as a problem, because that’s what they want to hear. Hate to tell you that.

I think online only or a hybrid online/in person is a great idea.



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02 Aug 2019, 12:56 pm

SocOfAutism wrote:
Hi Mona!

There were a few problems. I was having problems finding a venue that people could reasonably get to. Some people involved were college people and I anticipated that we would have many college aged people going, but somehow colleges did not want to give up a room. I was down to begging local churches, but I was getting a flat no from some of the bigger cities I wanted to target.

The autism organizations around here wanted nothing to do with me.

Approximately where is "around here"? (Just asking for a very general geographic locale, not anything specific enough to compromise your privacy.)

SocOfAutism wrote:
I do not have any “credentials” in education or childhood autism “therapy” and so that meant we were not on the same team.

Given their rejection of you for not having the kind of “credentials” they wanted, how did you manage to stick around long enough to discover the other issues that you mention below? Or did you discover these issues in other, earlier contexts (e.g. in the context of doing your research) rather than in the context of trying to offer a workshop?

Based on my own experience with a local professional-dominated autism org, I gather that these groups regard professional credentials as a sine qua non, without which they would never, for even a millisecond, ever even remotely consider sponsoring a workshop held by you, even if they were absolutely head-over-heels in love with your ideas.

SocOfAutism wrote:
Autistic adults as a sociological population does not really exist in their world. I knew from grad school that my view of autistics as being equal to non-autistics was not cool to their sort, so I played that down, but I guess they saw through me. I think I was saying things like “differently abled” and “strength based” and so on. The secret handshake words they seemed to be looking for were things like “independence goals” and “quality of life”. You know, as if you guys are all drooling in a corner, looking to be released from your ice fortresses.

Some of the professional-dominated orgs do have a more enlightened attitude than that. In particular, the New England-based Asperger/Autism Network (AANE) and the former Aspergers and High Functioning Autism Association (which recently merged with AANE and changed its name to AANE-NY) seem to support a strength-based approach. Also at AANE-NY's most recent Long Island-based conference, there was a lot of talk about how the professionals should listen more to autistic adults. Nevertheless, even they require that any and all events they sponsor must be led by fully-qualified professionals.

SocOfAutism wrote:
One of those places I went to had a teen boy who had sensory issues and didn’t like to touch doorknobs (smart kid-they are filthy). No one was allowed to open a door for him, so he would pace back and forth, waiting for someone else to go through so he could dart after them without touching anything. Why the h*ll didn’t someone just give this kid some Lysol to spray things with?

Or a packet of tissues, or a pair of gloves, so he could avoid touching the door knobs directly?

SocOfAutism wrote:
I mean, come on. Great schooling. This is what they were doing with his time. HIGH SCHOOL age. Give him a practical solution and move on so the kid can go to college or get a job.

In what context(s) did you visit this place? When doing your research, or when looking for places to hold your workshop?

SocOfAutism wrote:
What I imagine is that they were thinking that I would sabotage young people with my ideas of diverting focus from acting normal to developing their interests and talents. Just working around the things that are problems for society. Again, I didn’t tell them my radical ideas, but I think they knew. They could tell I didn’t feel sorry for autistics. So if you are dealing with this NT parents and teachers crowd, I would say make an effort to represent autism as a problem, because that’s what they want to hear. Hate to tell you that.

Well, no, I don't think we should compromise our principles. It seems to me that they'll change their tune if/when, and only if/when, we ever manage to build a sufficiently well-organized community of autistic adults.

Some progress has already been made, thanks to the existence of a few famous autistic people like Temple Grandin, and thanks to the existence of ASAN. Unfortunately, ASAN can be easily dismissed because there's no well-organized larger organized autistic community that ASAN could serve as the activist wing of. Insofar as ASAN has managed to be effective at all, its effectiveness seems to rely (as far as I can tell) primarily on its ties with the larger disability rights movement, rather than on its ties with any larger autistic community beyond a few well-known autistic bloggers and their fans.

SocOfAutism wrote:
I think online only or a hybrid online/in person is a great idea.

We need an in-person component in order to be taken seriously, and also to enable us to make friends. Yet we probably need most of our groups to be primarily online, for convenience.


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- Finally diagnosed with ASD in May 2019, after having suspected it for over ten years, and after having deeply explored the autism community for over one year while waiting for and obtaining diagnosis.
- In longterm relationship with boyfriend who was diagnosed with Asperger's Syndrome in 2001.
- Long history of participation in various oddball subcultures.
- My "Getting to know each other" thread: Hello from NYC.