Your gripes about peer-led autistic adult support groups?

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Mona Pereth
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19 Dec 2020, 1:36 am

If you've participated in any autistic peer-led in-person support groups (for adults), what were they like?

In particular, did you have any issues with the way those groups were run, or with the people in those groups?

I'm asking this to help me become a better facilitator of my own support group (which currently meets online but will hopefully meet in-person again after the CoViD crisis).


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NeilM
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20 Dec 2020, 1:55 pm

I facilitated a small group last year. I became involved with an organization that provided a place for autistic (and other) adults to go during the day while parents worked. Some of these people had part time jobs but some didn't work at all. I don't recall that any of them could drive. They were in the 20 - 30 yo age range.

Anyway, with me being a retired high functioning autistic they considered me a valuable resource for these people. I have done quite a lot in my life: I went away to university, was in the military, have been married twice, was employed 95% or more of the time. So there was quite a bit I could impart just from my own experience.

I had sessions on relationships, employment, bullying, diet/health/hygiene, among others. Mostly geared toward helping them toward the goal of living independently. There were 8 sessions in a set and I conducted two sets of the 8 sessions with different people. We had a third set planned when covid hit which of course halted everything.

Those are the high points. Let me know what other info I can give you.


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Mona Pereth
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21 Dec 2020, 1:20 am

NeilM wrote:
There were 8 sessions in a set and I conducted two sets of the 8 sessions with different people. We had a third set planned when covid hit which of course halted everything.

Have you or the organization considered holding meetings via Zoom, and/or via text chat?


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21 Dec 2020, 4:07 am

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.



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21 Dec 2020, 11:51 am

Mona Pereth wrote:
Your gripes about peer-led autistic adult support groups?
The ones I checked out all quickly devolved into "echo chambers" run by the most vocally dominant members -- anyone who disagreed with them on any subject was immediately "diagnosed" as a neurotypical and told to get out.


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NeilM
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21 Dec 2020, 1:36 pm

Quote:
Have you or the organization considered holding meetings via Zoom, and/or via text chat?


To my knowledge, no. As I said this was a place where these adults could go during the day while their parents worked or at least got a respite. And it is my understanding that the place totally shut down once covid hit. I have had no contact with anyone there since April when I emailed my contact person about the sessions we had scheduled. He said he was just responding to emails from home.

Hopefully with the coming of the vaccine they can re-open before too long.


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Mona Pereth
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30 Jul 2021, 2:48 am

Does anyone else here have any issues with any autistic peer-led autistic adult support groups (or other kinds of autistic peer-led groups) they've been a part of?

My point in asking is to help me prepare for next week's meeting of the Autistic Peer Leadership Group, in which the topic will be various things that can go wrong in an autistic peer-led group -- and ways to avoid those pitfalls.


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05 Aug 2021, 11:05 am

I feel like a lot of these types of groups (or at least the ones I know of) tend to have an older average age, which is not what I’m looking for as someone in his mid-twenties. And these older folks grew up in a time where the job market was less competitive, housing was more affordable, and going to university didn’t mean taking on tens- or hundreds of thousands in student debt, so they don’t get how difficult it is for younger people nowadays.

Due to these gripes I actually founded my own little social group in my area for autistics age 18-29 (this will probably be amended as I approach 30 years old), that currently has 9 active members. We usually meet via zoom, though we have had a few in-person meetings as well since the entire group is vaccinated.


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05 Aug 2021, 11:14 am

The group I was in started out strong and congenial. It devolved into a hierarchical echo chamber where people were not treated equally. Individual weaknesses, needs, and challenges were frowned upon so that everyone could play by the same ableist rules. Unfortunately the rules were different for those in charge, and the rules changed so frequently that I couldn't keep track. I gave up.

It sucked.



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05 Aug 2021, 11:31 am

Fnord wrote:
The ones I checked out all quickly devolved into "echo chambers" run by the most vocally dominant members -- anyone who disagreed with them on any subject was immediately "diagnosed" as a neurotypical and told to get out.
IsabellaLinton wrote:
The group I was in started out strong and congenial. It devolved into a hierarchical echo chamber where people were not treated equally. Individual weaknesses, needs, and challenges were frowned upon so that everyone could play by the same ableist rules. Unfortunately the rules were different for those in charge, and the rules changed so frequently that I couldn't keep track. I gave up. It sucked.
It seems we have both been involved in groups where the leaders have extremely narrow opinions on what we could and could not talk about, and that anyone who thought otherwise was no longer welcome no matter how much they needed support.  It sucks, big time!

One group I joined was controlled by one member who dominated six consecutive meetings by reciting the same litany of rejection and misery over and over again, and no one was allowed to change the subject or say anything that was not in total support of her dramatic performance.  The final straw was when the facilitator openly reprimanded me for asking "Does anyone want coffee?" during break.

During.  Freaking.  Break.

That was the last time I attended, and is also the last time I will ever attend a "support" group again.


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05 Aug 2021, 11:55 am

inclusivity


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IsabellaLinton
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05 Aug 2021, 12:23 pm

Also, there's too much division of people by gender and politics.

People who think for themselves or don't parrot the groupthink get gaslighted, ghosted, or banned.



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05 Aug 2021, 12:43 pm

IsabellaLinton wrote:
Also, there's too much division of people by gender and politics. People who think for themselves or don't parrot the groupthink get gaslighted, ghosted, or banned.
Golly ... it is as if they were all run by members of this very website!


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IsabellaLinton
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05 Aug 2021, 12:57 pm

Not at all. It was a FB group.



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06 Aug 2021, 10:31 am

IsabellaLinton wrote:
Individual weaknesses, needs, and challenges were frowned upon so that everyone could play by the same ableist rules.


This is actually something we talked about a lot at our last women only -support group live meeting when we were discussing about what kind of rules we should have (the group is new.) The main idea that the two leading members had was that rules could be bent around a little bit depending on the person due to differences in capabilities, but I pointed out that that creates the risk of people feeling that they're being treated unfairly if someone else gets away with something they wouldn't. Fortunately, they understood my point, and we all agreed that we'd work on it so that if someone felt like they were treated unfairly, it would be talked out and explained why one person gets to do something the others don't or why one person doesn't have to do something that others do. If this will actually work is yet to be seen of course.



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06 Aug 2021, 10:58 am

↑ While this is all well-and-good, there is still the issue of facilitators ignoring one person's expressed weaknesses, needs, and challenges until those same issues are express by someone they like.  This puts the first person in the position of feeling unwanted, insignificant, and ignored -- issues that may inhibit that person from ever expressing their issues in the group, including their feelings of being unwanted, insignificant, and ignored.

Why try to draw attention to one's self when the person knows no one else cares?

This is why the needs of the truly needy often go unanswered.


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