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SocOfAutism
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05 Aug 2019, 3:16 pm

I’m in southwest Virginia in the US. I’m from here and still live here. I guess I find out things mostly like anyone else does-I just pay attention and keep up with things that interest me.

I purposely tried not to be noticed by the big autism centers around here while I was studying once I noticed that what I was doing was in conflict with what they were doing. They might have seen me as competition for funding and caused problems with I was trying to get my study approved. I didn’t try to get any funding however. The money for autism mostly comes from places that I would not accept it from (organizations trying to eradicate autism) and what is left over us badly needed by other people.

I’m not really sure what you’re asking specifically. I’m pretty long winded and I can easily get off track. If you can guide me back to what you’re looking for I’m happy to answer.



Mona Pereth
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06 Sep 2019, 10:55 pm

From other recent threads:

- Adults with autism combat isolation and learn life skills over dinner by Harriet Tatham, ABC Radio Sydney, Wed, Sept. 4, 2019. About an event held by the Autism Community Network in Australia. See the thread Sidney’s Social Dinner group.

- Autism National committee, an autistic rights organization founded here in the U.S.A. way back in 1990. See the thread AutCom conference Nov 1-2, 2019, in Concord, NH about their upcoming conference.


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Mona Pereth
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07 Sep 2019, 9:46 pm

Here, in the thread Information Links About Autism/Asperges.

Juliette wrote:
On behalf of some older friends/acquaintances who I’ve always thought highly of ...

“Hello friend, now please go away”:
Jane Meyerding(A timeless classic fwiw)...


That article contains the following very important point:

Quote:
Nor can we take it for granted that we will be able to get along comfortably with all people on the autism spectrum. Although this essay is by and about asocial autistics, there are some people on the spectrum who are as much or more social than most NTs (neurotypical people). These social autistics share with us our inability to "read" the social cues conveyed in the huge portion of NT communication that is not verbalized (body language, facial expressions, assumptions about what words and phrases mean when they are used according to convention or otherwise non-literally, etc.). As a result, they are likely not only to make many social blunders but also may be even more of a problem for asocial autistics than a reserved or "good mannered" NT would be. An autistic with a highly social orientation, who probably has suffered many rejections and is hungry for friendship, may be harder for us to relate with than a polite person who is neurotypical and has no notion about autism at all.

Obviously, relatively social autistic people like myself are going to be the ones in the forefront of any and all autistic community-building. We'll need to keep in mind the needs of the asocial folks too when seeking accommodations for autistic people.


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Edna3362
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08 Sep 2019, 5:49 pm

Mona Pereth wrote:
Here, in the thread Information Links About Autism/Asperges.

Juliette wrote:
On behalf of some older friends/acquaintances who I’ve always thought highly of ...

“Hello friend, now please go away”:
Jane Meyerding(A timeless classic fwiw)...


That article contains the following very important point:

Quote:
Nor can we take it for granted that we will be able to get along comfortably with all people on the autism spectrum. Although this essay is by and about asocial autistics, there are some people on the spectrum who are as much or more social than most NTs (neurotypical people). These social autistics share with us our inability to "read" the social cues conveyed in the huge portion of NT communication that is not verbalized (body language, facial expressions, assumptions about what words and phrases mean when they are used according to convention or otherwise non-literally, etc.). As a result, they are likely not only to make many social blunders but also may be even more of a problem for asocial autistics than a reserved or "good mannered" NT would be. An autistic with a highly social orientation, who probably has suffered many rejections and is hungry for friendship, may be harder for us to relate with than a polite person who is neurotypical and has no notion about autism at all.

Obviously, relatively social autistic people like myself are going to be the ones in the forefront of any and all autistic community-building. We'll need to keep in mind the needs of the asocial folks too when seeking accommodations for autistic people.

As an asocial autistic... Who happened to have social and networking skills and experiences... No social anxiety to speak of... With connections on higher places on local scale...
Been born and grew up in a very social and collective oriented culture... Surrounded by serious social models that no amount of masking skills could pull it off.
Seriously, your 'foreign' NTs is comparatively 'aspergerian' from my 'native' NTs.

It's a big irony. :lol:
But heck yeah, I seriously relate to the "Hello friend, now go away" story. It is practically what I feel almost every time someone else is in the house -- even being attached that person and practically a living sanctuary...


Yet in all seriousness.
Asocial just means that; asocial. It doesn't necessarily mean aversive nor needy. It's not even really introversion or low social energy. It's just a trait that means having no social appetite or plain disinterest.
It's just being 'social' is simply a choice than a need. Yet considering the common circumstances of many autistics, many asocially inclined ones would prefer to be not social and not ever desire it.

Yet that doesn't mean asocial autistics cannot be just as social nor not able to relate those who don't.
They can choose to be open, they have the option to practice sociality and understand it on their own volition. But what are the odds that could happen though?


Heck my own case and most portions of my environment might've been 'built' for the socially inclined, yet my personal inclination is and remained asocial no matter what my predisposition and influence I've got.
My own choice here is that I won't be active in any community building or any networking cultivation. Not now, for now.

Then there's the opposite of my case, which seems to be plenty in this forum -- rationally inclined, external and concrete oriented, 'monotonous, cold and logical' alexithymics who would rather have the traits built for the socially inclined because their personal inclination is social. Some figured that they are more socially needy than they might've originally concluded.
If not, socially inclined autistics surrounded by a more monotonous and less socially inclined culture -- if not whichever NT culture they're into isn't very suitable for their individual autistic sociality.


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Magna
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08 Sep 2019, 7:52 pm

You bring up good points, Mona such as: "lack of communication between sectors" and how there should be more neighborhood based groups.

"Community" is a relative term. An 'autistic community' could be a single group of people in a single place and remain autonomous. The members of that group would benefit but no one else would benefit from that group. And, one such group most likely wouldn't even know about another such group. There would be no continuity or inter-group communication.

To build a national or international community I envision a movement being started in which the founders develop an easy to follow template that anyone can use to start their own local autism group. This template would be a very specific "how to" guide with procedures, timelines, meeting outline examples, etc. A kit. The founders would maintain a website which could be used to disseminate information to the local chapters and the local chapters could devote a certain amount of time to discussing autism issues highlighted by the organization.

Picture an apolitical or at least non-hyper political ASAN creating a kit for any autistic person anywhere to use to start a local group which maintains its affiliation to the parent organization. I would hope for a brand new organization with the outlook of uniting autistics of all walks of life to find each other locally and support each other locally but using a similar format. Picture something so unified and similar that a person could move and easily find and hook up that same affiliated group in a new town, city, etc.

I've thought about starting a local autism group where I live. I've googled starting autism groups and from what I recall there was a website from an autism society in a different state that had some good practical advice but nothing step by step. I'm afraid I yearn for a step by step guide....


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AQ-43 (32-50 indicates a strong likelihood of Asperger syndrome or autism).
EQ-14 out of 80
Rdos: Your neurodiverse (Aspie) score: 173 of 200
Your neurotypical (non-autistic) score: 39 of 200
You are very likely neurodiverse (Aspie)


Mona Pereth
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09 Sep 2019, 1:19 pm

Magna wrote:
I've thought about starting a local autism group where I live. I've googled starting autism groups and from what I recall there was a website from an autism society in a different state that had some good practical advice but nothing step by step. I'm afraid I yearn for a step by step guide....

Let's start a separate thread about this, maybe in the "social skills and making friends" section. Also, free free to PM me.

I'm in process of starting a local group too, so maybe you and I can develop a template together from our own experiences.


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Mona Pereth
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09 Sep 2019, 1:29 pm

Edna3362 wrote:
Asocial just means that; asocial. It doesn't necessarily mean aversive nor needy. It's not even really introversion or low social energy. It's just a trait that means having no social appetite or plain disinterest.

Different people mean different things by the word "asocial." The author of the above-linked article seemed to mean an extreme introvert who finds even small amounts of social interaction to be very tiring. Other people may be "asocial" in other senses of the word, but the point of the above-linked article was to discuss the specific problems of those autistic people who find any and all social interaction to be very tiring.


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09 Sep 2019, 1:35 pm

Anaheim has about a dozen aspie/autism support groups, each is run by a young, upwardly-mobile professional psychologist.  None of them seems to be much more than "echo chambers" wherein the same opinions are repeated over and over, or "support groups" that seem to support only one or two members while everyone else sits around and either nods their heads in tacit approval or play with their smartphones.


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09 Sep 2019, 1:43 pm

Fnord wrote:
Anaheim has about a dozen aspie/autism support groups, each is run by a young, upwardly-mobile professional psychologist.  None of them seems to be much more than echo chambers wherein the same lessons are repeated over and over, or support groups that seemed to support only one or two members while everyone else sat around and either nodded their heads in tacit approval or played with their smartphones.

I think it would be better to have groups with more focus and structure, with part of the meeting devoted to some pre-announced topic (preferably a different topic for each meeting) and part of the meeting devoted to general support for whoever needs it.

Also, a good leader is one who makes sure everyone has a chance to speak and is included, rather than letting any one or two people monopolize the discussion.


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09 Sep 2019, 2:00 pm

Mona Pereth wrote:
... a good leader is one who makes sure everyone has a chance to speak and is included, rather than letting any one or two people monopolize the discussion.
Imagine that you are one of those "good leaders" you mentioned.  Now imagine that every time the group meets, the same people simply must discuss their latest meltdown or some obscure traumatic incident from their childhood.  You, as the leader, must then either spend the group's time trying to deal with those same people (over and over again), or risk being dismissed for not doing so.

And dog forbid that anyone else would even hint that the traumatized individual should contain themselves long enough to give another person a chance to speak -- oh, no! -- that is both an insult and a threat to the traumatized individual, who then goes on a rant about freedom of speech and being told to shut up.

At this point in every meeting, I take it as my cue to leave.


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09 Sep 2019, 5:31 pm

I would say that when there are persistent incompatibilities between the needs of different members, then it's time for a peer-led group to split.

Ideally, groups would encourage at least some of their members to learn leadership skills, and train them in same, so that, when a peer-led group needs to split, it can.

If it can be accepted that such splits are inevitable and that they are something to be prepared for, even welcomed as part of the community's growth, then hopefully they can happen on non-hostile terms, with the peer leaders remaining in touch with each other (e.g. via some online-based leadership council, perhaps) and making mutual referrals as needed.


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09 Sep 2019, 8:09 pm

Mona Pereth wrote:
Edna3362 wrote:
Asocial just means that; asocial. It doesn't necessarily mean aversive nor needy. It's not even really introversion or low social energy. It's just a trait that means having no social appetite or plain disinterest.

Different people mean different things by the word "asocial." The author of the above-linked article seemed to mean an extreme introvert who finds even small amounts of social interaction to be very tiring. Other people may be "asocial" in other senses of the word, but the point of the above-linked article was to discuss the specific problems of those autistic people who find any and all social interaction to be very tiring.

Then where are their socialities lie if they can afford sociality?
If they no longer have their anxieties, if they no longer had their negative social conditioning over their heads involving their past circumstances, if they no longer had a very limited stimuli intake stamina that held one back from being social?
Are they still 'asocial' instead of introvert then? :|


I could say the same with varying traits of autism.
Namely about the representation itself.
Think the leader -- or leaders, at least the most of them might had to go beyond the dichotomies to actually have this 'balance' between autistic representations... Instead of the loudest of them all, or the most notable of all. Or heck the most verbose of them all. :lol:


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Mona Pereth
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14 Sep 2019, 5:18 pm

Mona Pereth wrote:
Magna wrote:
I've thought about starting a local autism group where I live. I've googled starting autism groups and from what I recall there was a website from an autism society in a different state that had some good practical advice but nothing step by step. I'm afraid I yearn for a step by step guide....

Let's start a separate thread about this, maybe in the "social skills and making friends" section. Also, free free to PM me.

I'm in process of starting a local group too, so maybe you and I can develop a template together from our own experiences.

I've started a separate thread on one aspect of community-building: Learning LEADERSHIP skills: Not as hard as you might think?


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15 Oct 2019, 6:15 pm

According to the Spectrum News article Young adults with autism flounder in face of service gaps by Valerie Paradiz, 11 August 2015:

Quote:
People with autism are also serving as their own change agents. The Autistic Global Initiative, a program I direct for the nonprofit Autism Research Institute, is made up entirely of adults with autism working in the disability, medical, advocacy and education fields. The initiative develops training programs and provides advice to organizations from the very people they aim to help.

Alas the link to "Autistic Global Initiative" no longer works. Googling, I found two pages here and here about them, both dated 2014, and nothing more. Hopefully someone can start something like this again.


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15 Oct 2019, 6:43 pm

I happen to know Valerie Paradiz. She is the mother of Elijah, and is the primary author of the book "Elijah's Cup," about a young autistic boy who became Aspergian later in life.