Your gripes about peer-led autistic adult support groups?

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


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.


Agreed.

Unfortunately, being truly autistic-friendly requires a specific set of skills that no one (autistic or NT) automatically has, and that even leaders or would-be leaders of autistic support groups don't necessarily have. These skills must be learned. I call them the autistic-friendly social skills. They include non-masky variants of assertiveness (without being aggressive), active listening, and conflict resolution.

I personally think it's important for autistic peer-led support groups to have meetings devoted to learning and practicing these skills, in addition to regular general support group meetings.

It's also important, as I said earlier in this thread, for groups to have clear sets of rules and guidelines.

That particular group was new and trying to form, so I guess you could call the six or so people not counting me as the steering committee. I think the issue was that no one really had a plan to start with, and so even getting started on a plan devolved into endless debate about the best way to go about it. Have I mentioned that we had a ton of engineers and tech people in these groups yet?

Were most of these engineers and tech people earning a decent income? If so, why were they so stingy, as mentioned earlier?

Hard to say actually, not all of them were employed at the time, but enough of them were that it was odd that we had so much trouble around money. I was more referring to the mindset though, nothing could ever be simple, it had to be planned out to the nth degree with every contingency accounted for, unless you just did everything yourself and told everyone when and where, which is what we mostly did in the main group.

No, I've never lead a "support group"----but I've been in therapy. Support groups, while not classic psychotherapy, have many elements of it. I do believe people who have been in psychotherapy---especially group therapy---could offer valuable insights.

I don't believe many people here could post here under the "guidelines" proposed by the OP. I guess there is some justification for a discussion amongst people who are experienced in this area, since people who have lead support groups, obviously, could offer some more valuable insights than those who have not.

But the way the "guidelines" were presented, I find, is quite exclusionary. I feel that in my gut. It's not a nice feeling. This feeling prevented me from advancing very far in life. We should, in the autistic community, veer away from social Darwinism.

It's not "what you say"----it's "how you say it."

I used to run a support group years ago. Its style of sitting in a circle and talking invited the lower functioning autistic adults with carers, rather than the more independent kind who more wanted to have fun in a pub group type setting. I think each to their own.

Here, I wrote:

I posted this in order to stop a derailment of this thread that was turning into a flame war. (The worst offending posts have since been deleted by the moderators.) I most definitely did not want this thread to end up getting locked or deleted. I also wanted it to return to being a high-quality, focused discussion.

Note that I did not request that people post in this thread only if they have led support groups -- that would be much narrower than what I did request, above.

Also, please let's not derail this thread with further discussion about my request or its rationale. If anyone wants to discuss it with me, please PM me. (Not all the specific reasons for my request are fit to be aired publicly.)

Last edited by Mona Pereth on 12 Aug 2021, 12:59 pm, edited 4 times in total.

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

I think it's best for the autistic community to have a mix of both highly diverse groups and more-specialized groups. The LGBTQ+ community has this, and so do other disability communities, e.g. the National Federation of the Blind, with its various subgroups. A thriving subculture needs both kinds of groups.

The highly diverse mix here on Wrong Planet works well IMO.

However, most people form friendships with people with whom they have a lot in common. I think it's important to bring people together with people who have enough in common with them to be likely potential friends.

Also, more-specialized groups can serve specific purposes that a more general group can't. For example, a career-oriented group devoted to a specific category of profession / occupation / job, once such a group gets big enough, would be in a good position to encourage relevant employers to accommodate autistic people in both the workplace and the hiring process. (My group Autistic Techies of the NYC Area is not yet anywhere near big enough for this purpose, but hopefully will get there eventually.) And some such groups, such as a hypothetical group of neurodivergent special ed teachers, would hopefully be able to form some sort of working relationship with relevant labor unions.

Last edited by Mona Pereth on 12 Aug 2021, 12:57 pm, edited 1 time in total.

I agree with what you say about having a mix of diverse groups and more specialised groups. Ideally, I'd be in both.

In my case I only have so much energy to devote to autism groups. They all need to be online because I'm not comfortable meeting people in real life, and I'm not interested in making more "real life" or in-person friendships. So then I'm left looking for online, peer-led autism groups. I can picture that I'd need a lot of them for all my different issues. Maybe one for autistic people with trauma, one for autistic parents, one for autistic academics, one for assertiveness or making boundaries with people, etc . That seems a bit overwhelming for me, compartmentalising my issues or deciding which one is most important to join. Then add in the fact I'm lower functioning (whether we use that word or not --- it's true that I have serious limitations to the types of advice I can or will follow, or how much change I can actually achieve).

In my mind no matter which group I might choose to attend as a specialty or niche, it could become divisive between members who are more able and less able. Sometimes I'm in the "more able" group. Let's be honest. Most people I talk to online would have no clue that I'm "less able", unless I tell them. People give me advice or support and I can't always follow it. I don't ask for advice or support very often because I don't want to sound ungrateful if my life doesn't change over time. On the other hand, I don't want to be in a group just for people who a) share my interests and b) function like me, because that sounds far too restrictive. Plus, let's be honest, groups are never going to be that specific. I definitely see the purpose of your groups. I have nothing against them and I think they're great for certain demographics. If I was still working, I might have benefitted from your sessions about employment and autism advocacy.

Anyway, I'm just rambling. I didn't realise when I first posted to this topic that you were looking for input only as it pertains to "in-person" support groups. That isn't stated in the thread title, and although it's in your OP I must have missed that detail. I wouldn't be comfortable in an in-person support group because of my mutism, CPTSD, agoraphobia, panic attacks, and sensory issues. Online works best for me. I just wish that online autism groups could be inclusive. As I've said before, I notice that less-able members get shamed, teased, ghosted, mocked, and often banned because of their differences with emotional regulation, self-concept, written language, innuendo, or impulse control. It's a shame that those most in need of support are often the first ones rejected by their peers.

I'll step out now since I'm not interested in in-person groups, or being a leader. I just wanted to reply to your comment without leaving it unanswered.

Best wishes.

You want advice? OK.. the very high functioning with decent jobs might attend a support group once, and then never come back. That's my experience. I don't think it's possible to make an AS support group specifically for certain groups work. Perhaps if they were a part of their current workplace and certain qualifications were required, I don't know. I knew people who worked for Goldman Sachs who went to support groups, but they did data entry type level work.

It may not be what you want to hear, but it's my experience after attending lots of support groups over the years since I was a kid, into adolescence, and into adulthood. If you want to meet like-minded people, don't go to or form support groups.

I don't get why you're getting that upset about all of this. People have added some valuable input. So the people whom have led support groups aren't as credible to you as the people who have only participated in them? Aren't the people who have led them the very people you're likely to gain the most insight from?

I was just going to say something along these lines. I wouldn't want to go to a group like that.

Sorry, I should have included online groups that meet via text-based chat, conference call, or Zoom -- especially during the pandemic, but also at other times too. What I should have said, rather than "in-person," was more than just online forums (like Wrong Planet) or social-media-based groups.


You're certainly not the only one. I think online groups will continue to have an important role in the autistic community even after the pandemic. Most of own groups will likely continue to have an online component, and some of them will likely continue to be mostly online with only occasional in-person meetings. I myself wouldn't have the time and energy to race around to monthly in-person meetings of every single one of my groups.


As I see it, the basic problem is that there is a minimum level of social skill that is required in order to be able to get along with anyone at all, including other autistic people. Therefore a group needs to be limited to people who have, or who are at least capable of developing, that minimum level of social skill. Otherwise, the group just can't function as a group.

Moreover, that minimum required level of social skill needs to be higher for an online chat group than for a moderated online forum, and needs to be still higher for an in-person group (or even for a conference call or Zoom chat) than for an online text-based chat.

Ideally, there would be therapists who specialize in helping autistic adults acquire that minimum level of social skill. In many cases this would also mean treating co-occurring conditions (e.g. depression, which in some people makes them extremely irritable, and various personality disorders, which trap people in a vicious cycle of self-perpetuating insecurities).

Ideally also, support group leaders would have handy lists of professionals to refer people to as needed.

And, as noted earlier in this thread, the autistic community does need professional-led support groups as well as peer-led ones. We especially need (but don't yet have very many) professional-led support groups for autistic people with specific co-occurring conditions.

Last edited by Mona Pereth on 12 Aug 2021, 3:55 pm, edited 2 times in total.

We have a misunderstanding here. Of course the people who have led them are the very people I'm likely to gain the most insight from.

I certainly didn't mean to exclude people who have led support groups from this discussion. I just said (as a clarification, in response to someone else's misunderstanding) that I don't want to limit this thread to people who have led support groups. But people who have led peer-led support groups are a subset of, not a set disjoint from, people who have attended peer-led support groups. And the latter are the people I want to hear from.

I'll respond to the rest of your post soon.

Last edited by Mona Pereth on 12 Aug 2021, 3:20 pm, edited 1 time in total.

It's not mine.

My experience, with a wide variety of groups of different kinds, with a variety of different audiences, in a variety of different subcultures, is that nearly all groups have a solid core of regulars, plus a lot of people who attend just once and never come back, plus a bunch of people who attend only occasionally.

And, in my experience with the autistic peer-led support groups I've participated in over the past 3+ years, both in-person and online, neither the regulars nor the one-timers fell into any particular category in terms of support needs, beyond being (with one exception so far, hopefully a one-timer!) capable of participating meaningfully in the group in the first place.


Autistic Techies of the NYC Area (which is intended to be much more than just a support group, although it does serve support-group-like functions among other things) seems to be working fine so far, as an online chat group. It just needs to grow. Our typical meetings have four regulars plus, usually, one one-timer or occasional attendee, which has been a steady pattern since February.


We do need other kinds of groups besides just support groups. For example, in my opinion, we need hobby-oriented social groups focused on specific hobbies.

For a list of some of the many different kinds of groups I think the autistic community needs, see Longterm visions for the autistic community. Support groups are just one of the categories.


I'm not getting upset about "all" of this. There has been plenty of productive discussion in this thread.

Last edited by Mona Pereth on 12 Aug 2021, 3:21 pm, edited 1 time in total.

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. Or even better for autistic folks: Trivia. 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