Your gripes about peer-led autistic adult support groups?

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Trust me, I was there, I spent 5 years + trying to solve these issues and work with people, it really did come down to the fact that a group for high functioning people has little in common with a group for the lower functioning, and trying to do both eventually leads to the low functioning taking over. I'm aware that this is not a popular observation in this community, but I don't see anyone else with actual organizing experience chiming in here.



We did do potluck, our format was that myself and the event host were both enthusiastic cooks, so we'd provide a sort of main course or backbone food, e.g. burgers or pizza, with everyone else bringing whatever they wanted (we never imposed a requirement to bring anything. People would still complain that they didn't like what we made or demand we make a special version for them (again, for free), and then not eat it if they didn't personally like it, while also not making any effort to provide for their own special needs. The other stunt people would pull would be to hoard all of something that was intended for everyone, such as we'd put out bacon for burgers and someone would try and take the entire plate and eat just that, or I'd make guacamole and someone would try and take the entire bowl for themself. It got very old.



That's not what my group was about, we were providing a social group for people who had difficulty socializing, not a discussion group or skill building group. There is a real difference between someone who works in tech and has some odd hobbies and few friends and someone who lives in a group home or with their parents because they can't function in the world, and it requires different groups with different approaches to support them.

Also, when I say difficult people, one of the things I'm talking about is guys that make women very uncomfortable, we had a real issue with a guy that would essentially corner women and talk "at" them about these graphic snuff clips he'd watch on ogreish or whatever the site was back then, and follow them around even after being asked to stop; that particular guy was one of only 2 people we ever actually kicked out, but we had similar issues with quite a few.



Notice my join date vs yours? Things used to be different around here, and the change has not been in a good way. There's a reason that I haven't been around for nearly 5 years, and most of the other high functioning people with critical thinking skills have fled as well. Some of that can certainly be put down to the rise of social media vs forums like this, but the exodus had already been happening years ago, it's most noticeable in the News and PPR sections, in case you don't spend much time in those areas.

Thanks Mona. I wasn't suggesting that you've done anything wrong. I hope it didn't look like I was ranting at you. It seems like your groups are really well structured, and I know you contribute a lot to autism research / education.

I take the idea of "lower functioning" from my diagnostic report which refers to my "functional" level in a number of measures. In a practical sense, I don't function very well so I'm OK with the label. As you know, that doesn't diminish the fact that I'm highly educated and well-read. I have never done a formal IQ test but I'm an accomplished academic with strengths across many disciplines. Day to day living is another story altogether. I've managed to do quite a few things which are outside of my comfort zone -- mostly by necessity rather than choice -- but it's taken it's toll. I'm in permanent burnout mode and have been done with society for many years.

I know that "lower functioning" used to refer to a person with limited IQ. It's just a little frustrating when people (not you), still think that all bright autistic people are "high functioning". This includes most medical and mental health providers. There is so much advocacy about the high achievement and creative ability of autistic people, that our daily struggles aren't readily understood by insurance companies, disability rights groups, and health care providers. It's hard to strike a balance between a public message that we're intelligent or resourceful, and public awareness that our lives are often quite difficult. It's hard to be taken seriously, even with HFA or the moniker-du-jour of pop culture.

Despite my pathetic-looking list (sorry for that), I'm a happy person when I'm on my own in a safe environment. I think I'm quite empathetic and intuitive. I'm generally optimistic, I have an ironic sense of humour, and most of the time I'm in a good mood. I stim 24/7 but I spend most of my time in a pillow fort reading philosophy or literature. I'm quite a series of contradictions but I love my life and I like being autistic.

Back to your original question, I don't want to be segregated into a different community just because of my life skills, my needs, or my interests. I like having a diverse community to chat with, including people of all ages and abilities. I don't know what the answer is, in terms of planning a peer-led autistic adult support group. I certainly couldn't do it and I tip my hat to anyone who can. I know it's a very difficult job to accommodate people's differences while also maintaining group standards. School teachers manage to implement individual education plans for every student, if needed, while still maintaining a homogenous or unified classroom feel. I don't know how to translate that into support groups, but I think the answer lies in an acceptance of our unique personalities, rather than a further division into parts.

They do. Here in NYC, there are at least a few peer-led support groups (one of which has been around continuously for about 10 years) and at least several professional-led support groups that I know of.

My aim is to diversify the autistic community beyond just generic support and social groups.


A vast oversimplification.

While I'm "capable of communicating and socialising," I'm not capable of socializing in typical NT ways. I have huge difficulty with multi-person chitchat, for example.

My social life has always revolved around oddball subcultures of one kind or another. Looking back on it, I strongly suspect that nearly all the friends I made back in my twenties and thirties were probably also on the autism spectrum.

In any case, my partner is not NT.


As far as I can tell, the vast majority are not "living normal lives."


This is probably why the autistic adult community has grown only very slowly -- but it nevertheless has grown. It may grow faster if it becomes more widely publicized.


This doesn't happen very often, in my experience.

How do you know? even cursory investigations by researchers suggest 25% of autistic people are undiagnosed. Those who experience problems in life get a diagnosis. However the level of problem probably doesn't always necessitate joining a support group.



well if those joining get benefit (you claim these groups have existed for 10 years) then that's good. Just curious what the gender breakdown is from those seeking support?

I'm sure there are plenty of people who "experience problems in life" but don't get a diagnosis. There's a shortage of psychotherapists qualified to diagnose autism in adults. And most other psychotherapists, psychiatrists, etc. don't know enough about adult autism to refer people for a diagnosis. Nor is it covered by most insurance. Hence it's likely that there are lots and lots of autistic people who cannot afford a diagnosis, and to whom the possibility was never suggested in the first place.


A peer-led support group is at least a whole lot cheaper than a psychotherapist. (It's good to have both if possible.)


Mixed in-person groups tend to be very much predominantly male. There are also separate women's groups.

Support groups are a sort of artificial environment. Bringing seemingly random people together who don’t know each other from Adam at first. If one desires to lead such a group, one has to keep that in mind.

However, they are useful in alleviating loneliness, and in giving gentle nudges out of comfort zones.

Perhaps, instead of classifying people as "high-functioning" vs. "low-functioning" (terms whose very definition is controversial at best), it might be better for a group to have a clearly-stated set of rules, and state that only those people who can understand the rules and who are willing and able to abide by them are welcome to attend. Seems to me this would exclude a lot of the nastiness you've attributed to people being "low-functioning."


Perhaps it might have been better to require, or at least strongly encourage, people to bring something? Especially the people with very narrow food requirements?


Did you put these items on a separate table labeled "condiments," or whatever the appropriate general term for these items would have been?


That might be a problem right there. For many autistic people, including many "high-functioning" people, including myself, generic socializing -- simply for the sake of socializing -- is much more difficult than socializing in the context of something more specific and focused. So, for me at least -- and, I suspect, for many others too -- it's better to have (1) discussion groups and (2) social events revolving around a specific activity or theme, rather than just people hanging out.

Additionally, as our community grows, I think it's crucially important that as many of us as possible learn autistic-friendly (i.e. non-masky) variants of assertiveness, active listening, and conflict resolution skills. Otherwise, I fear that our community will drown in drama.


That's true. But I don't think the labels of "high functioning" and "low functioning" are the best way to make this distinction.


Ugh. This is indeed likely to be a recurring problem in the autistic community -- and probably not limited to so-called "low functioning" men, alas. Again I think this is best dealt with by having clear, well-defined and well-publicized rules, and promptly expelling anyone who violates the rules (especially the more serious rules) more than once.


Well, I'm glad you're back, at least for now. It's nice to compare notes with a fellow organizer.


Seems to me there has been a loss of "critical thinking skills" in the U.S.A. as a whole and perhaps the world as a whole, especially on political matters.

This thread began with the following post:

I would like to request that all further replies in this thread be made only by people who have "participated in any autistic peer-led in-person support groups (for adults)" -- or perhaps other kinds of autistic-led in-person groups.

I would also like to request that replies be confined to the kinds of feedback that could help leaders/facilitators do a better job.

Please do NOT derail this thread with arguments against the very idea of autistic peer-led in-person support groups, if you are a person who has never participated in such a group.

Please, also, do NOT derail this thread with arguments against the above request.

I hereby also request that any subsequent derailing posts be removed by the moderators as off-topic.

@ Mona:

I think you're getting a little hung up on my use of high and low functioning; for me they're basically shorthand, not scientific terms, for describing the two major types of people who showed up at my group. I'm not trying to be judgmental or insulting when I use the terms, it's more about pointing out that the two groups require different types of support, and that failing to realize that and being too nice to enforce an "I'm sorry, this group is not for you" kind of policy ended up causing my own group to implode over time. I'm also going to add that I was in my late 20s when I co founded that group, and that none of the founders had any experience with organizing up to that point, with the exception of our host, who managed IT personnel and had run meetings before.

We really played the whole thing by ear, we actually started out as a more conventional discussion type group where we'd go around a table and talk, but the group grew so quickly that one day we had to get everyone to stand up to rearrange the seating, and what ended up happening was that while everyone was standing they started forming groups and chatting, and we never did end up sitting back down for a group discussion. The new, all social format we then went to turned out to be far more popular than the group discussions were (we had a real problem with people rambling when it was their turn to talk and taking up all the time), and so we retooled the group as a social mixer for those on the spectrum.

I should add, we did have one thing that might be a little controversial, in that we served alcohol at our meetups. We never had anyone get drunk or anything, but the effect it had on loosening people up was dramatic, it really was a game changer in terms of changing the whole tenor of the events and making them into true social mixers for the terminally awkward. On a personal note, it was also handy as an event host who was expected to circulate and converse with as many people as possible, since I could keep a beverage in my hand at all times, and if I got buttonhooked by say someone who's intent on describing the intricacies of the Seattle area bus schedule in minute detail (true story), I could polish off the drink and simply clink the ice cubes, "whoops, gotta go get a refill!", and move to the other side of the room.

On a side note, I looked it up, and apparently the group has managed to reform and reconfigure itself into a new, more spread out form, with far more members than during my tenure:

https://www.meetup.com/Squarepegs/

The name and logo are my creations, but it looks like all of my content is gone, and I'm certainly no longer among the leadership team, but it's nice to see that something I helped create has continued to help people; we even had several eventual married couples meet during my time there, and I hope that tradition has continued.

Nothing wrong with having standards. And indeed a group's standards, whatever they might be, do need to be enforced somehow.

My suggestion is that the standards should be as clear, specific, and unambiguous as possible, rather than referring to them by vague, inflammatory labels with a long history of controversy. Regardless of whether you intend to be judgmental or insulting when you use the terms "high-functioning" and "low-functioning," they are IMO a bad choice of words, due to both their history and their ambiguity.

Moreover, I think a group's standards should be related as directly as possible to the needs of the group, e.g. "must be able to understand and abide by our rules and guidelines".

Having the standards be clear, specific, and unambiguous also makes them easier to enforce.


How did you promote/publicize your group, besides your Meetup site?


Did you try having both social events and discussion meetings for a while, or did you immediately switch to having just social events only?

If the latter: Since the group was growing anyway, it's hard to say which format would actually have been more popular in the long run -- although, had you kept the discussion meeting format in addition to the socials, you probably would have needed to split the discussion group into smaller groups to keep it manageable.

Also, how many people were attending at the time of the switchover?

There's a group here in NYC called Aspies for Social Success (AFSS), which, before COVID, held all four of the following kinds of events: (1) general support group meetings (two per month, one on a weekday evening and one on a weekend afternoon, to accommodate different people's schedules), (2) after-meeting dinners, (3) themed/activity-oriented social events, and (4) generic stand-alone social events.

I attended mostly the support group meetings followed by after-meeting dinners. I am under the impression that the support group meetings were the organization's most popular type of event, more popular than the generic social events. But perhaps that might be because the meetings are held in rented space, free to attendees, whereas the social events are held in a diner or restaurant.

Having a variety of different kinds of events is a good thing, IMO. Different kinds of events work well for different people.

AFSS met in Manhattan. I re-started a separate, smaller group that met in Queens and met at a diner, with plans to rent space for meetings once we grew to a dozen or so regular attendees. Alas, the COVID crisis happened before we could reach that goal.

I may respond to other parts of your post later, if/when I have time to do so.

Anyhow, thanks very much for participating in this thread! I am very glad to hear from a fellow organizer.

Just to be clear, I never said anything like this when I was actively organizing, what you're hearing from me now is sort of a post mortem of how I saw the group break down over time, hence the blunt language. That's actually a little intentional, as I'm trying to impress upon people what a big deal this turned out to be, so others can hopefully avoid some of the mistakes I made.



Don't laugh, but Craigslist was my biggest early advertising success. I don't know if they still allow this, but back then you could advertise gatherings for free, and I made a number of flyer type adds for our "social group for anti-social people" that really helped jump start the attendance early on. That ended fairly quickly as word of mouth spread in the community and I didn't need to advertise further, but that's what worked for me.



I remember it happening pretty quickly, our group strongly preferred the social mixer format, and the group grew rapidly once we changed over from the discussion round tables.



We were very loosely organized, the event host would hold the one big meeting per month, but anyone was free to organize their own smaller subgroups under our banner, and some did, but they never managed to hold together very long. They had a lot of problems finding spaces to meet, they'd try to lay down ground rules and get caught up making the rules for weeks at a time, the would be hosts would be super flaky, etc. Much later, closer to when I dropped out, several satellite groups formed that used a discussion format, one meeting in a church in a smaller city nearby, one meeting in a bookstore as a women's group (that eventually turned into a trans group, but that's a different story), but the main group pretty much stuck to the social mixers while I was in leadership.



Maybe 10-12 that showed up regularly, there were a lot that signed up and never showed up in person.



Yeah, that's way more than we were equipped to do, we did one meeting a month on a Saturday night, and then the members were free to setup whatever they wanted using our site and resources.



Based on my experience, that's likely correct, we could not get anyone to help pay for anything ever, and the handful of times we tried meeting in restaurants it was a disaster. We did do a very small pub event a few times, but that was limited to people we knew a little better and who were more functional and financially solvent than most of the other members.



No problem, like I said I hope my experience is useful to someone, at the time I was doing it this stuff was completely unknown, so we really had to make it up as we went along, and I learned some very interesting things along the way.

Thanks for the info. How and where did you distribute the flyers?


I think that if one is going to spawn multiple groups, it's a good idea also to have a leadership council and/or leadership self-training group for the leaders and would-be leaders of groups.

Currently I lead/facilitate or co-lead/facilitate six groups that meet via text-based chat (at least until COVID gets under control). One of them is the Autistic Peer Leadership Group.

About the "women's group (that eventually turned into a trans group, but that's a different story)" -- how did that happen? Did cis women just stop attending after the group started explicitly welcoming trans and/or nonbinary people? I ask because I'm thinking of starting a women's group myself, and I'm trying to figure out how best to make it welcoming to trans and nonbinary people as well as cis women, without turning off people in any of these categories. (Note: on this specific issue, please reply in the separate thread Trans-inclusive language question rather than here.)


How did you go about trying to get anyone to help pay for things?

Currently, fund-raising is not an issue for us because all meetings are in a free online chatroom, but I'm sure it will be an issue for us eventually.


How was it a disaster?

I've heard some people discuss horrible experiences having been in Autism support groups. 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."

Human nature, etc. All Aspies are different, etc.

But the one place that should be more tolerant and less exclusionary is a group filled with otherwise socially excluded people. The one place where the leadership should "know better," and be more lenient can be a real drag when it turns into an attempt at neurotypicality.

I myself have never been in one of these Autistic support groups. In late 2019, I thought about going to an in-person meet-up in Manhattan when the weather got nicer, but then COVID became our reality.

Still, I would suggest the leader of any such group know who his/her contingency is and not resort to alienating the already alienated (especially since the leaders themselves are alienated everywhere else).

Oh, they weren't physical flyers, that was just the format I used for the Craigslist posts.



Yeah, just to try and clarify, all of us had full time jobs and this was a casual thing we did, it really wasn't that regimented or organized. I actually went to a spinoff group for a while that tried to do more like what you're saying here, and what ended up happening was endless meetings about the rules and how to draw them, it was like an autistic constitutional convention with all the detail various people were insisting on, and it just dragged the group down. The final straw for me was when that group tried to do a movie night and picking the movie took several hours with several rounds of nominations and vetoes and strikes for cause, it just got absurd.



We sent out email blasts to our membership soliciting donations a few times, and toyed with charging a nominal admission ($1 IIRC), and people did not respond well at all.



Endless debate about the restaurant, hand wringing about the cost, people with special dietary needs vetoing anything that might have otherwise worked, etc. Mostly it was about the money, no one was willing to spend anything, and all the attempted restaurant meetings only had 2-3 people show up.

Was the entire group (or at least all the regulars) involved in the decision-making, or was there a steering committee?

In my groups we didn't have an "autistic constitutional convention." I just wrote a draft of the rules, then solicited feedback from people individually via email or Wrong Planet PM, and then made modifications in response to feedback, then briefly discussed the rules in one of our chat meetings. Further rules were added as needed, as we gained experience.

Also it seems to me that things like selecting a movie for a movie night shouldn't need to be done at a physical meeting, but could better be done via email, or via a Meetup message board.


Hmm. So I guess the Queens discussion group was doing pretty well with 4 to 7 people (including myself) showing up at our diner meetings.

Last edited by Mona Pereth on 12 Aug 2021, 4:19 am, edited 2 times in total.

After 5+ years and over 1,000 members, my group only ever kicked out two people; one was a guy who wouldn't leave women alone, he would physically corner them and talk about graphic videos he was into (he was warned repeatedly about this behavior), the other was a Korean man who spoke very poor English who repeatedly got in full on screaming matches with other people for reasons we often couldn't figure out at all (I think he had issues beyond autism). We had some really strange people in my group, but it took a lot to get kicked out.