Your gripes about peer-led autistic adult support groups?

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Mona Pereth
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12 Aug 2021, 3:41 pm

kraftiekortie wrote:
Labeling these meetups “support groups” is probably not going to attract many lonely people. Many people don’t like the concept. Too much like going to a shrink or group therapy.

Like Smudge said, people want to have fun—like in pubs. Like playing pool amid a discussion that wasn’t formally labeled a discussion. People would get together to play pool. If a discussion happens….cool. If not….cool, too

Something more informal that’s not explicitly meant as a therapeutic situation. Or a political situation.

What you put forward—discussions about “special interests” without support group implications, is probably more many people’s speed. Then, perhaps, these discussions might evolve into a support group.

I might propose an autism rights discussion, say. And there might be takers. But don’t label it a “support group.” You wouldn’t get as much of an audience.

That’s just my take on it. I’m not seeking to screw with your plans. I wouldn’t protest against your notion of things

Hopefully we can all agree that the autistic community needs many kinds of groups other than just support groups. And, of course, not everyone needs or wants a support group.

Nevertheless, support groups still are one of the essential kinds of groups that the autistic community (as a whole) needs (even if there are plenty of people in the community who don't need one).

Now, with that out of the way, hopefully we can get back to the topic of how make autistic peer-led support groups better?


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Mona Pereth
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12 Aug 2021, 4:17 pm

EDIT: Here's a link to the new thread What kinds of groups does the autistic community need?.

Everyone, I would appreciate it very much if further discussion about autistic-led groups other than support groups could go there, so this thread can go back to its original intended topic.


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Last edited by Mona Pereth on 12 Aug 2021, 7:56 pm, edited 1 time in total.

ezbzbfcg2
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12 Aug 2021, 5:13 pm

Mona Pereth wrote:
ezbzbfcg2 wrote:
I've heard some people discuss horrible experiences having been in Autism support groups.

What kinds of horrible experiences have you heard about? (Without naming the groups or the people.)

A lady butted heads with the leader of the group she was in and her top two cohorts. The ringleader lady accused the victim of not being "Autistic enough" and ousted her. But after the lady was kicked out, other members of the group whom she'd gotten along with ceased communication because the group leader instructed them to have no further contact, even outside of the group. Apparently, they all complied for fear of being the next target.

To me, a group for social misfits, ideally, should be the one place where this doesn't happen...as every member of that group would be the misfit in a "normal" group dominated by NTs. Hypocrisy.

Mona Pereth wrote:
ezbzbfcg2 wrote:
While there are two sides to every story, when an Aspie is kicked out of a group made for Aspies, it means he's either really out there, or the group has become a microcosm that's trying to "play neurotypical."

Or the group has fallen into lazy autistic-unfriendly habits, such as expecting people to "just know" how to fit in, or expelling people without telling them exactly what they did wrong.

In a sense, that is playing NT, even if subconsciously. I think some Aspies, when given some power, either consciously or unconsciously try to emulate what they've been the victims of, like it's their turn to be "normal."



Mona Pereth
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12 Aug 2021, 5:43 pm

ezbzbfcg2 wrote:
A lady butted heads with the leader of the group she was in and her top two cohorts. The ringleader lady accused the victim of not being "Autistic enough" and ousted her. But after the lady was kicked out, other members of the group whom she'd gotten along with ceased communication because the group leader instructed them to have no further contact, even outside of the group. Apparently, they all complied for fear of being the next target.

Ugh! Sounds downright cultish (in the authoritarian/abusive sense). Certainly a support group leader/facilitator has no business telling members what to do, or whom to associate with, outside of the group.

ezbzbfcg2 wrote:
To me, a group for social misfits, ideally, should be the one place where this doesn't happen...as every member of that group would be the misfit in a "normal" group dominated by NTs. Hypocrisy.

What you've described sounds far worse than what a typical "normal" group dominated by NTs would do.

ezbzbfcg2 wrote:
Mona Pereth wrote:
ezbzbfcg2 wrote:
While there are two sides to every story, when an Aspie is kicked out of a group made for Aspies, it means he's either really out there, or the group has become a microcosm that's trying to "play neurotypical."

Or the group has fallen into lazy autistic-unfriendly habits, such as expecting people to "just know" how to fit in, or expelling people without telling them exactly what they did wrong.

In a sense, that is playing NT, even if subconsciously. I think some Aspies, when given some power, either consciously or unconsciously try to emulate what they've been the victims of, like it's their turn to be "normal."

Perhaps so, and that's very unfortunate.

I would be interested in any thoughts you have on how to avoid falling into this anti-pattern.

My own thought, as I've already said, is that what's necessary is for as many of us as possible to learn autistic-friendly, non-masky variants of assertiveness, active listening, and conflict resolution. What do you think?


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Mona Pereth
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12 Aug 2021, 5:51 pm

Summer_Twilight wrote:
Years ago, I attended a peer support group which was a guinea pig group that was funding by a university. They never wanted to do any activities outside of the bi-monthly meetings. There was always some sort of excuse. They were also very rude.

One of the members always came and seemed to enjoy being the center of attention by playing the victim card while taking away time with the leader

Someone was always yelling at other members all the time for different things which caused a lot of new people away. I ended leaving for that reason.

A few members of the group picked on me for being too hyper, talking too loud. Yet, they had no patience

Thanks for posting this. All of these situations are likely to come up in support groups (and other kinds of groups too), and are worth pondering how to handle.


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12 Aug 2021, 8:42 pm

AquaineBay wrote:
A gripe I have is that in groups(that I have attended) forming friends and relationships seems to not really be a big priority. You don't really get help in that aspect and kinda left to your own devices to figure out how to do that. Yes they do talk about it but other than that, you don't get coaching on it or any real info on places to go, help with the type of people you may best get along with, or even social media advise to help find and form these things. Also if you struggle with the concept of friendship and relationships(romantic)(such as myself) then you are just basically screwed. No break-down of the concepts or anything just the good ol' "You'll know when it happens" or "You'll figure it out".

I'm sorry to hear this. I agree that friendship is a very important concept. I also suspect that friendship tends to be a bit different for autistic people (those of us who have managed to find friends) than for NT's.

For more discussion about friendship, please see the thread Thoughts about friendship.

I also responded here to other parts of your post.


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Mona Pereth
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12 Aug 2021, 8:51 pm

Fireblossom wrote:
I started going to one last year. At first it felt a bit like a waste of time since there were so many of us in one room, so there was really no time for everyone to talk in the two hour meeting all that much. Things got better after they started to divide it in to two groups, with no criteria on who's in which group, aside from the fact that there had to be a voluntary instructor, preferably more than one, in both groups. But honestly, even that's a bit like Russian roulette since you can't know who you end up in the same group with. There are certain people who I enjoy talking with, both about very serious and not serious at all stuff, even though we have different views on some things. It's possible to enjoy talking to them since they aren't the type to try to push their opinions to others even when they disagree. However, there are also some with strong opinions on politics. I do too, but the difference is that I avoid bringing them up in our support group. Technically, the rule there is that it's okay to bring up one's own religious and political views, as long as one doesn't try to push them on others, but the ones who're supposed to keep up order aren't really keeping an eye on this and stopping political talk. That's one thing I'd consider a fault; talk about politics should not, in my opinion, belong to a peer support group. So if you're going to lead one, don't let anyone, be they left or right, talk about their political views too much. That can be stressing to people, even when they agree with some of the political talk.

Another thing is that sometimes some people talk too much, and others don't have the chance to speak. This is something I feel like I end up being guilty of pretty often. Not on purpose and I try to tune it down, I even often tell the instructors to just tell me to shut up if I've talked too much, but I still feel like I don't give the others enough chances to talk. Not that I think I'm the only one; there are others who talk as much as I do, if not more. Then there are those who talk for a very long time once it's their turn. What I'm saying is that it's good to keep an eye on that one or two people don't take all the time to talk, be it conversations between a few active talkers or a long monologue from someone. Make sure that everyone who wants to talk gets to talk.

My support group also has this one guy who always seems to have the need to tell his own opinion about everything someone else says, even when it has nothing to do with him. Gets annoying in the long run, but I have no idea how to guide someone out of doing that, so I don't know how to advice you on avoiding letting anyone do that.

We've also had a few women only -meetings, and that's been good especially for relationship talks since the main group is... well, a little sexists, if not down right misogynist, sometimes. If things work out, you could at some point check if there's a need for women only (or men only) groups. Not just for relationship stuff; when it comes to workings of one's own body, those things are easier to discuss in a same sex group. I still remember that one meeting where Mr. Gotta Have An Opinion On Everything belittled one woman's birth giving pains... I didn't see her again after that until we had our women only -group.

Thanks for the above detailed reply to the original post. You've described lots of situations worth pondering how to deal with.

I replied here to some of the issues you raised above. (Just calling your attention to it because it got buried in this thread.)


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19 Aug 2021, 4:10 pm

Mona Pereth wrote:
Summer_Twilight wrote:
Years ago, I attended a peer support group which was a guinea pig group that was funding by a university. They never wanted to do any activities outside of the bi-monthly meetings. There was always some sort of excuse. They were also very rude.

One of the members always came and seemed to enjoy being the center of attention by playing the victim card while taking away time with the leader

Someone was always yelling at other members all the time for different things which caused a lot of new people away. I ended leaving for that reason.

A few members of the group picked on me for being too hyper, talking too loud. Yet, they had no patience

Thanks for posting this. All of these situations are likely to come up in support groups (and other kinds of groups too), and are worth pondering how to handle.


In the beginning I loved the group because I felt like I could relate to the people in the group. I had even developed a crush one of the people in the group who I later learned was not for me. When I saw the other drama, I left.



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20 Aug 2021, 11:58 am

One of the main problems I ran into with this group was that it can be very hard to connect with others on the spectrum for the following reasons

1. Misreading each other's body language and social cues
2. Could not do certain activities around some of the members - For example, one member got mad at another one for playing games on his flip phone (This was 2004 and 2005.) "You can't play that in here anymore."
3. Someone was always putting the other one into sensory overload. Then they would yell at at other members, which turned others away
4. Some people needed a little more time to process what another member was saying - When I was younger I would talk so fast others could not understand what I said. The leader would often tell me "Talk more slowly?" "Can you say that again?"
5. As I said, they got mad at me for being too loud - The leader even said "Now the last time you were here, you busted my eardrum."


The leader of the group had good intentions and qualities but he had some problems of him own.



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23 Aug 2021, 4:58 pm

Personally, I've found one-on-one sessions with a therapist experienced with the Autism Spectrum to be the best "ice-breakers."

I've participated in a couple of Autism support groups of not more than five people. I immediately sensed that the other participants experienced deeper difficulties that I was personally experiencing; sometimes I felt memories of the traits I had overcome long-ago.

Most support groups only experienced a limited interest- and hence only existed for a short time to accommodate only a few weekly meetings.

Personally, I've found support groups to approach my experiences with the Autism Spectrum from the wrong angles. Support groups encourage participants to mainly focus on difficulties - that is efforts on discussing difficulties in which I have long overcome, and are best left in the (distant) past.

From what I've heard, (even here on WP), it's best to focus on activities which reassess one's strengths in order to overcome one's weaknesses - that is activities, objectives, etc. involving NT-like people with High Functioning Autism (HFA)-- who've also found that Autism support groups were unnecessary.