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cyberdad
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28 Oct 2019, 4:40 am

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 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.


Yeah my daughter has attended two of these here in Melbourne run also by "young upwardly mobile psychologists". Your description is identical to the ones here except the age group is around 13-14s.

They fail on two fronts. Firstly the children seem to sense the contrived nature of the gathering so the psychologists organises ice breaking exercises and group activities to involve the children. Afterward there is an opportunity for the children to interact over pizza. I notice many of the girls come with either an NT friend or sibling so go straight to them and talk/socialise ignoring other kids. I wonder why the parents even bother bringing them if the purpose was for their daughters to socialise? the others bring a smartphone and play video games. My daughter seems to be the only one there who legitimately is there to socialise.

The second failure is that these gatherings are sold as a networking opportunity for the parents to meet with other parents. Here the aspiration utterly fails. I have never met a single parent from the multitude of autism social groups I have attended whom has shown any interest in networking. I think to be fair parents are so self-absorbed in their children they seem to lack the social space to include new families. But there is also the ever present social class/comparisons thing that goes on. Most parents take one look at me and decide I'm not worthy of socialising with (despite being articulate and a good speaker). what can you do? :shrug:

Then of course there's other parents who are too shy to interact and find me intrusive or unsettling when I speak to them. And then of course there are those who live vicariously through their other NT children and think they are somehow different to the rest of us.

Anyway...good intentions...not such great outcomes. For the psychologists it's a nice money earner and an opportunity to put something on their portfolio/resumes.



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30 Oct 2019, 9:50 am

cyberdad wrote:
Yeah my daughter has attended two of these here in Melbourne run also by "young upwardly mobile psychologists". Your description is identical to the ones here except the age group is around 13-14s.

They fail on two fronts. Firstly the children seem to sense the contrived nature of the gathering so the psychologists organises ice breaking exercises and group activities to involve the children. Afterward there is an opportunity for the children to interact over pizza. I notice many of the girls come with either an NT friend or sibling so go straight to them and talk/socialise ignoring other kids. I wonder why the parents even bother bringing them if the purpose was for their daughters to socialise? the others bring a smartphone and play video games. My daughter seems to be the only one there who legitimately is there to socialise.

Probably because most autistic kids are averse to socializing in groups? IMO, to help autistic kids make friends, there needs to be an organized system for matching them up with other kids of similar cognitive profile who share their interests. What do you think?

cyberdad wrote:
The second failure is that these gatherings are sold as a networking opportunity for the parents to meet with other parents. Here the aspiration utterly fails. I have never met a single parent from the multitude of autism social groups I have attended whom has shown any interest in networking. I think to be fair parents are so self-absorbed in their children they seem to lack the social space to include new families. But there is also the ever present social class/comparisons thing that goes on. Most parents take one look at me and decide I'm not worthy of socialising with (despite being articulate and a good speaker). what can you do? :shrug:

Then of course there's other parents who are too shy to interact and find me intrusive or unsettling when I speak to them. And then of course there are those who live vicariously through their other NT children and think they are somehow different to the rest of us.

Did any of these groups include any organized activities/ice-breakers, or at least group discussions, for the parents too?

I think most groups of people in general naturally tend to be cliquish unless they make a specific effort not to be.

cyberdad wrote:
Anyway...good intentions...not such great outcomes. For the psychologists it's a nice money earner and an opportunity to put something on their portfolio/resumes.

Do you have any thoughts on how these groups could be organized better?

(Note: Parents/family/kids groups aren't the main topic of this thread, which is the autistic adult community; but it may be interesting to note similarities and differences between the parents/family/kids groups and the autistic adult groups.)


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cyberdad
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31 Oct 2019, 1:43 am

Mona Pereth wrote:
Probably because most autistic kids are averse to socializing in groups? IMO, to help autistic kids make friends, there needs to be an organized system for matching them up with other kids of similar cognitive profile who share their interests. What do you think?

In an ideal situation you would have some type of application like a dating site which matches children on the spectrum based on their cognitive profile. However that would be reliant on people subscribing to such a platform so if there's a limited pool of willing participants we are back to square one.

Mona Pereth wrote:
Did any of these groups include any organized activities/ice-breakers, or at least group discussions, for the parents too?

No

Mona Pereth wrote:
I think most groups of people in general naturally tend to be cliquish unless they make a specific effort not to be.

Yes

Mona Pereth wrote:
Do you have any thoughts on how these groups could be organized better?

I think they should be organically organised through parent groups rather than by professionals. We have Asperger associations here in Melbourne but they have weird requirements like a "diagnosis" to join. I stay clear.

Mona Pereth wrote:
(Note: Parents/family/kids groups aren't the main topic of this thread, which is the autistic adult community; but it may be interesting to note similarities and differences between the parents/family/kids groups and the autistic adult groups.)

Point taken...the "autistic community" only includes high functioning adults...message received loud and clear



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31 Oct 2019, 3:34 am

cyberdad wrote:
Point taken...the "autistic community" only includes high functioning adults...message received loud and clear

Depends you mean by "high functioning."

Obviously, people who can't communicate at all can't participate in a community of any kind.

But, here on Wrong Planet and other autistic online forums, there are at least a few people who can't talk but can type. (Example: Ezra here on WP.) Also here on WP, there are quite a few people who have identified themselves as being Level 2.

Also, in one of the support groups I attend, there's at least one person with mild intellectual disability. (He often mentions being a participant in the "Special Olympics," which are for intellectually disabled people.)

There's more that the autistic community can and should do in order to be more inclusive of relatively severely disabled autistic people -- although there are, unfortunately, limits to how far we can go in that regard.


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31 Oct 2019, 4:49 am

Mona Pereth wrote:
There's more that the autistic community can and should do in order to be more inclusive of relatively severely disabled autistic people -- although there are, unfortunately, limits to how far we can go in that regard.


I'm not disagreeing with you, just pointing out that you referred to this as an "autistic community", I think what you mean is you are trying to create an "Aspergers" community.

Some years ago I met a fairly wealthy business owner who an his own IT company. As we talked he revealed he had Aspergers (there was a couple of things he was self-conscious about and thought he should explain to me).

Like you he had plans to create a community of adults but he was very particular he wanted a network of "successful" professionals with Aspergers. His idea actually had merit.

I didn't keep in touch despite accepting his facebook friendship, main problem I had was an attitude that people like him didn't want to have anything to do with lower functioning people on the spectrum as if they don't matter. I think part of the issue was he lacked a filter for politeness/refinement but he may have developed values (growing up) that autism was associated with not progressing. As I said he was quite wealthy and successful so I had nothing but respect for his tenacity and hard work. But lets be fair, he demonstrates better than anyone that there are two autistic communities in the world.
- Folks who live with dependents
- Folks who are independent



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31 Oct 2019, 1:15 pm

cyberdad wrote:
I'm not disagreeing with you, just pointing out that you referred to this as an "autistic community", I think what you mean is you are trying to create an "Aspergers" community.

No, certainly NOT that narrow. I myself don't quite fit the DSM IV definition of "Asperger's disorder." (I was developmentally delayed, including speech delay.)

EDIT: I consider this misunderstanding between us to be a derailment of this thread. If you still want to claim that the adult autistic community is an Aspie-only community, or that I'm trying to build an Aspie-only community, please do so in one of the threads linked below, rather than here in this thread.

I just now created the separate thread The autistic community and the autism parents' community, and I've replied to the remainder of your post here in that thread.

Alternatively, if you wish to argue a separation between "Aspergers" and "autism," perhaps we can have that discussion in "Autism" definition wars thread.


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cyberdad
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02 Nov 2019, 12:20 am

Actually how am I derailing this thread? we are talking about "building" the autistic community

I correctly pointed out that you are giving people the impression there is one autistic community when infact you contradicted yourself saying that there are exclusion criteria against children, low-moderate functioning autistic people and their parents.

That means you are creating divisions....



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02 Nov 2019, 5:50 pm

cyberdad wrote:
Actually how am I derailing this thread?

Not just you, but our (your and my) misunderstanding is/was derailing this thread.

If you don't understand why, please just humor me. I'm the O.P. and I said so. See also my more substantive reply here, in the other thread.

Everyone, please don't reply to this message here in this thread. Please reply only to my more substantive reply here, in the other thread. Feel free to continue any meta-discussion there too, in the other thread. Just not here in this thread, please.


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03 Nov 2019, 10:19 pm

auntblabby wrote:
in my last aspie group, it was divided between those with renumerative talents [programming, maths, hard sciences] and those of us lacking any earthly talents. when the talented ones went away to join others of like mind, what was left of the group seemed to evaporate. i was clueless as to what to do about this. a lot of the other members didn't really want to interact, to be honest, preferring to bury their noses in their respective smartphones. a brief rule about no smartphones on the table resulted in sullen silence. threw up hands.

Very good observation ... ! And agrees with no phones at table idea...
But a entire ggeneration has been spoon fed internet access ?
Need something ageeable . Like a large screen monitor . And 1 moderatoe of the meering having control . Verbal discussion based on what the entire group is reading .


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13 Nov 2019, 9:05 pm

My idea is to include some sort of activity with the meeting. My preference would be walking in the woods. I'm sure someone can think of some indoor activities too. My aspie teen daughter attends a facilitated meeting and the leader uses this approach and encourages the group to meet for other activities too.


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14 Nov 2019, 1:02 am

CarlM wrote:
My idea is to include some sort of activity with the meeting. My preference would be walking in the woods. I'm sure someone can think of some indoor activities too. My aspie teen daughter attends a facilitated meeting and the leader uses this approach and encourages the group to meet for other activities too.

Actually would like this based in a real life world. Activities that might transcend .. levels of the spectrum people were on ...... this could go onto several levels , and if peoples found outside commonalities .. so be it .
If sharing , fits , so be i
t .. but reponsible , thinking hfa peoples . Might try to oversee , for potential problems , depending on their own level of social skills and empathy towards others in the group .And endurance levels regarding these type of interactions


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14 Nov 2020, 7:14 pm

A more recent thread on this same topic was started here: building a real life ASD community, in the "General Autism Discussion " sub-forum.


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24 Nov 2020, 4:22 pm

cyberdad wrote:
I correctly pointed out that you are giving people the impression there is one autistic community when infact you contradicted yourself saying that there are exclusion criteria against children, low-moderate functioning autistic people and their parents.
But there is indeed one Autistic Community. It was established in 1992, and it includes about 20 organizations which are run by autistic adults. Participation in the community is open to autistics of all ages and all abilities. If you want to learn a bit about the history of the Autistic Community, you can start with this article, which chronicles the development of "Autism Network International", the Autistic Community's pioneering organization: https://www.autreat.com/History_of_ANI.html

Other organizations within the Autistic Community include the Autistic Self Advocacy Network (US), Autistics United Canada (Canada), Autscape (UK), European Council of Autistic People (European Union), Autistic Pride Alliance (International), Autminds (Netherlands), Autwave (Finland), Jasna Strona Spektrum (Poland), etc. All of these organizations are run by autistic adults, and they all have various links between them.

Another good resource for learning about the history of the Autistic Community is the online e-book "Autistic Community and the Neurodiversity Movement": https://link.springer.com/book/10.1007/ ... -13-8437-0

Depending on where in the world you live, you may have a local group run by autistic adults, which forms a part of the Autistic Community.

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29 Dec 2020, 6:14 pm

I'd argue the main reason is simply because these movements are largely against many of the things that make social groups function.

I.e. most social groups revolve around social competition and common purpose.

To have this you need social hierarchy. Most of these groups are against the concept for obvious reason.

Without hierarchy it is bloody hard to do anything of value. Want to find a date? It largely function of hierarchical arrangements. Want to find employment, well you have to learn to compete.What to have a group that can produce anything, leadership is required.

And I get this just sounds like ramblings around a particularly narrow view of human behavior, but unfortunately it is not.

For an autistic community to function it needs to embrace the idea that social communities are based on a collection of hierarchies. We're taught that these hierarchies are arbitrary and are simply bad for us, but the opposite is scientifically proven to be true.

But again I'm whizzing into the wind. The science that we need to be made aware of is considered taboo, or worst yet seen as something too complex for us to understand.

The key is to appreciate that by engaging in communities/hierarchies your life will improve. You can get better employment, you can actually have access to sexual relationships, and most magically your special interests can be enhanced. Either by finding like minded people, or by simply having better resources to explore your interests.

The key to understanding hierarchy is that it isn't near as rigid or as vertical as it appears. The science is relatively clear your life will flounder without hierarchy and almost anyone that thrives, thrives within it.



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30 Dec 2020, 10:45 am

ChiefEspatier wrote:
To have this you need social hierarchy. Most of these groups are against the concept for obvious reason

Many autistic groups have hierarchies. For example:

Autscape has a Board of Directors, an Organising Committee, and several Sub-committees:
http://www.autscape.org/

The European Council of Autistic People has an Executive Board:
https://eucap.eu/executive-board/

Autistic UK has a Board of Directors:
https://autisticuk.org/

Aucademy have a hierarchy:
https://aucademy.co.uk/

Reframing Autism have a hierarchy:
https://www.reframingautism.com.au/about-us/

The Autistic Self Advocacy Network have a hierarchy:
https://autisticadvocacy.org/about-asan/leadership/


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30 Dec 2020, 3:17 pm

KenG wrote:
ChiefEspatier wrote:
To have this you need social hierarchy. Most of these groups are against the concept for obvious reason

Many autistic groups have hierarchies. For example:

Autscape has a Board of Directors, an Organising Committee, and several Sub-committees:
http://www.autscape.org/

The European Council of Autistic People has an Executive Board:
https://eucap.eu/executive-board/

Autistic UK has a Board of Directors:
https://autisticuk.org/

Aucademy have a hierarchy:
https://aucademy.co.uk/

Reframing Autism have a hierarchy:
https://www.reframingautism.com.au/about-us/

The Autistic Self Advocacy Network have a hierarchy:
https://autisticadvocacy.org/about-asan/leadership/


I didn't mean at an administrative level I meant on a social level.

nts naturally align themselves in social hierarchies through body language.

It's the process of creating spontaneous alignments that is the issue.

Since we are oblivious to body language it'd have to be done in a more literal way. Which would require some sort of task/goal that would give people places/positions within a social structure.

Again NTS do it so easily they don't even notice, we are oblivious and it is a major major issue.

To contribute to a group/community members have to take on roles, and people have to be motivated to perform in those roles to create a structure that can hoist a community.

When aspie groups are created they unironically emulate the most flimsy of nt styled social groups. We're emulating something we can't do. While paradoxically avoiding the more obvious easy to replicate structures like those found in the military/competitive sports/work environments.

I.e. we seek out groups for non conforming people and wonder why it fails. NT non conforming groups generally revolve around a whole lot of subconscious politicking and competitiveness. I.e. imagine a community of hipster artists all trying to out do eachother. It works because they are so driven by ego, and an unwritten rule that the most successful members of the community are those who can stay inches ahead of the trends.

For aspie groups to work they need to have a strong value of conforming to group needs. The aspie conformists generally avoid aspie groups and end up emulating nts. Most of the people seeking out other aspies are driven to avoid conformity.

The trick is to appreciate that conformity doesn't mean sacrificing your special interests. Ideally you need a broad enough hierarchy that multiple interests can fit under the same roof.