Your gripes about peer-led autistic adult support groups?

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So then it's incumbent on the group to ensure their benchmark rules are not above anyone's capacity.

My group was run by several NT people, some undiagnosed people, and many HFA.

There was no accommodation or recognition of the fact others had clinical diagnoses with lower functioning levels and a documented need for greater levels of support. Unfortunately the word "functioning level" wasn't even allowed to be mentioned, and those with more needs were expected to sink or swim.

I choose to step out of the pool.

What are some of the specific individual weaknesses, needs, and challenges that were frowned upon, that you think could and should have been accommodated? And how should they have been accommodated?


I question whether this is really possible, especially when people have conflicting access needs. For example, many autistic people have a strong need for structure, order, and predictability, and would thus need meetings to be highly structured and focused, whereas someone with the conjunction of ADHD and autism might thrive better in a more free-flowing conversation.

Also, I don't see how any kind of discussion group could accommodate those of us who don't have the ability to carry on a meaningful language-based conversation in any form, spoken or written, structured or unstructured. It is certainly possible to accommodate literate non-speakers and people with mild-to-moderate intellectual disability. (Wrong Planet manages to do so.) But I don't think it's possible to accommodate absolutely everyone.

I do think a group should try to accommodate people with as many different kinds of disabilities as it can.


What specific kinds of support did they require, that the group was unable or unwilling to accommodate?


One doesn't need to use the term "functioning level" to recognize a variety of dis/abilities and support needs.

Last edited by Mona Pereth on 06 Aug 2021, 5:33 pm, edited 1 time in total.

↑ Those excuses seem to be based on the "One size should fit all" concept.  There is no reason why there cannot be different groups tailored to different needs: Male/Female/Other, Structured/Unstructured, LFA/MFA/HFA, et cetera.  Being the only Autistic Adult Support Group in town is great, because it means that all available resources flow into that group; but if that one group accepts only one narrowly-defined type of autistic adult, none of the available resources will ever be used to support those autistic adults who do not meet the standards of the group...

... or its leader.

My trackpad is acting up so I'll have to consider one question at a time.

I don't like to use the word weakness but I think we can agree some people are stronger than others with interpersonal skills, problem solving, expressing feelings, theory of mind, prediction, understanding cause-and-effect, or dealing with emotional dysregulation / co-morbids like depression, trauma, anxiety, meltdown, etc.

What I noticed is that some members would try their best to post articulate, carefully worded and introspective statements or questions. They were often rebutted with rude or even dismissive responses from the moderator(s), and quite often their comments were blocked for responses because they might have said one word which wasn't deemed politically correct. The moderator(s) would say "This topic is closed for comments because you said XYZ" -- often something innocent and not in the least way offensive. Then others would "like" or "love" the moderator's comment. That seemed like gaslighting. If the member's comment was against the rules for some reason, then I believe the moderators should have messaged that person privately or in some cases even deleted the posting altogether rather than publicly shame them for making an error, and having others jump on board with their smug-little "likes".

I would give examples but I wouldn't want to shame anyone from FB further by repeating what I've seen.

It felt like the group was expected to meet NT or almost-NT standards. People were told they could only expect as much support from the group as they were capable of giving to others. Some people didn't have the capacity to write long or insightful advice / supportive comments to others. They would try saying "I'm sorry that happened", but then be told they weren't contributing enough, and shouldn't expect to receive concern or compassion in return.

The problem solving I witnessed was quite ableist at times. Suggestions like, "Get outside more" (what about agoraphobic people?), "Stop worrying about it" (um, we ruminate?), "Join a group" (many people don't want to socialise or don't have the ability because of exhaustion), or even "You've already talked about this _____ times, and we told you to ...." (dismissive / ableist / not respectful of mental health or looping thoughts). I've even seen people teased or ridiculed for poor spelling and grammar by others who excuse themselves by claiming to be "pedantic" or "a grammar Nazi".

People with traumatic responses were sometimes but not always referred to as snowflakes.

People with many diagnoses were told not to talk about their diagnoses / needs, or to label themselves as having specific needs, because accommodations couldn't be met and functioning levels weren't supposed to be mentioned. I understand the idea or intent of not using functioning labels. I know we all fluctuate and that levels can be damaging to people over all. I get that. But when a person has more pronounced functioning needs (e.g., not to be ridiculed on public media, to be respected within reason if they have a bad day (e.g., trauma trigger), recognition that they can't always contribute the way more literate or emotionally aware people can, undue expectations that they should manage their own emotional needs despite possible depression or anxiety disorders -etc), I think it begins to seem elitist.

I barely ever contributed to that board because I was afraid of making a misstep or being humiliated. It felt like it was moderated by Neurotypicals. It felt like I was back in High School, afraid to hang out with the big kids because I wasn't cool, savvy, or good enough.

I'm a very literate person. I can contribute easily about many topics, which is more than many others can do. Regardless, if I I felt intimidated by the clique-in-charge, I can only imagine how others felt when they were humiliated, dismissed as "too dramatic", or told they have to jump through hoops to be accepted by a group designed for those already at odds for their weakness in social skill.

The more you describe that website, Isabella, the more familiar it seems.

The really sad part is that you could be describing any or all of dozens of alleged "support" websites, not just on FB.

I feel like this gripe isn't specific to autism groups. Many people that were born in the 1960s-1980s tend to think that it is still easy to get jobs and that going to college will guarantee you a job. In my autism group I have my facilitators tell me to go to college a lot despite the fact that they have people in the group that went to college and still work at places like Krogers or Wal-Mart(basically part-time jobs that back in the day only teenagers would do and doesn't make enough money to live independently). As far as poor individuals go they also think getting off welfare(such as SSI/SSDI and housing) is easy by just "getting a job".

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 think we're kind of comparing apples and oranges. I'm referring to FB groups, or groups where people post at will and others respond by choice, if they feel so inclined. These were "peer-led autistic adult support groups" like you've named in the thread title. You lead groups with set times for meetings, and set topics for group discussion. Those are still "peer-led autistic adult support groups" (and I applaud you for it), but they're structured much differently than those I've joined.

People might need structure, order, predictability, and focus like you've mentioned, but that's not always possible in the framework of Facebook groups or even autism forum platforms like WP (I'm not complaining about WP, however). FB and forums aren't designed for that type of structure.

My concern wasn't about intellectual ability, but more related to people's emotional resilience, written communication skill, conflict resolution, and theory-of-mind. Many people don't know they're writing something offensive or they can't pick up on the nuance of others' posts. They are sometimes treated as being oblivious or rude, which is exactly what we're trying to avoid when seeking inclusion in autism support groups.

I think with this kind of thing, it's better to ask the experts, so NTs. There are books about it if you want to have normal friendships and relationships. While these showed me I'm just incompatible with humans, you might be way more normal and find use for them?

But the most important thing is to know what exactly do you want out of relations with humans? Depending on that, strategies might be different.

Of course it would be desirable to have lots of different groups accommodating lots of different people. However, in this thread, Isabella, Fireblossom, and I were all talking about attempts to accommodate everyone within one group. I don't think that's possible, which is one of the many reasons why we need lots of different groups per major metro area.

I've said many times, elsewhere here on WP, that the autistic community is exceedingly under-developed. We need many different groups, of many different kinds, that don't yet exist. For a non-exhaustive list of some of the many different kinds of groups I envision, see my page Longterm visions for the autistic community.


Agreed. Having just one big group is a bad idea, for many reasons.

Ideally, at least some of the many groups would be part of a network that would be happy to refer prospective members to whichever group(s) would most likely fit their needs best.

But my main reason for starting this thread was to gain insights into how an individual group (hopefully one of many) can function better.

Actually, I consider Wrong Planet and similar message-board forums to be well structured. By having sub-forums for specific topics, they can be much better-focused than your typical FB group is likely to be. Message-board forums like WP are typically structured to segregate the more controversial topics (e.g. politics) from other topics more central to the forum's mission, which goes a long way toward helping us all get along better here.


Yep. This is why my group has monthly discussions that are usually focused on what I call "autistic-friendly social skills," including autistic-friendly variants of assertiveness and active listening, to help us all get along better.

I agree. I should have elaborated a bit more, but I didn't want to be too wordy. Yes, message boards are structured in terms of subfora and topics, with appropriate rules for each section. What I meant is that message boards (and FB) don't have set times for people to meet and discuss predetermined topics. Someone can post and not find any responses for several days, or at all. There is no onus on other members to respond at all, if they aren't interested in the topic or they don't want to participate. They might not even see certain posts in a timely fashion, or at all, and there might not be a moderator or administrative support available if things go off track.

I haven't tried your format of meetings but from what I understand there is a topic posted ahead of time. People RSVP and attend if they are interested / able, and the conversation takes place in that time frame with your leadership or moderation present.

I think there are pros and cons to each format, but I was just pointing out that they're a bit different in terms of structure. I've thought about joining some of your groups and I still might. I have ADHD and I'm hit-and-miss whether I'll have energy on any certain date for any certain topic. I try not to commit myself to anything ahead of time (real life or online), because I hate backing out or disappointing people if I don't attend. I also think in a really divergent way with my focus going all over the place. One minute I might be writing something very serious and the next minute I'll be playing Leap Frog or otherwise zoning out. It's hard for me to sustain focus on any topic for a prolonged period of time, to follow a timeline, or to interact if I'm mid-shutdown.

Ugh. Yep, FB groups generally are notorious for that sort of thing. Part of the problem is the design of FB itself. If I'm not mistaken (correct me if I'm wrong; I haven't used FB in ages), FB group moderators don't have the ability to EDIT someone's post like WP's moderators can. That, in conjunction with contacting the user privately, is really the best solution to offensive remarks in a post.


That last issue is one for which the structure of forums like WP can be very helpful. For the good of the forum/group, it is necessary to prevent any one member from monopolizing the entire forum by posting tons of repetitious messages endlessly about problem X. However, instead of telling the person to stop posting about topic X, they can instead be told to post about topic X only in relevant sub-forums and limit the number of threads devoted to topic X, while allowing them to post as many posts at they want in those threads. It's harder to do the equivalent of this on an FB group.


Spelling flames. Not cool.


Agreed.


Yuck. Certainly, forum moderators and group leaders should aim to avoid intimidating their members in such ways.

Re: Facebook

I don't know if moderators can edit. That's a good question, but I don't think so. I'm pretty sure they can't.

I don't use FB apart from keeping contact with a small number of friends / family on Messenger. I haven't posted anything on my account in years, and all my settings are "private" or "only me" - just so I could keep the photos accessible in one place.

I didn't even know what a Facebook "group" was until I joined the one I did, for Autism. It was a huge mistake. I was so offended by the way people were treated that I refused to post anything. Reading was sometimes helpful but more often than not, I was shocked at the way people espoused hurtful generalisations against other groups of people. There seemed to be a LOT of hypocrisy (e.g., saying they were liberal-minded, but judging men, judging less able autistic people, judging people's opinions, etc). It was an exercise in artifical groupthink. I felt like I was masking all the time, just by reading posts and imagining how my responses would be censored.

Re: People who monopolise a conversation or spam the place with similar posts ad nauseum. I agree that there should be rules about cross-threading. A person should have the right to their own space, their own topic, their own issue, and their own feelings, but like you, I prefer it to be kept in consistent places. It's likely easier for the poster that way, as well.


Re: "It's the best solution to offensive remarks in a post ..." (quote) (sorry my trackpad is screwed up)

Yes it's the best way. I just wanted to point out, however, that the posts which I saw shut down by moderators weren't offensive at all. I had screenshots at one point because I was so shocked. If I can find them I will PM them to you for your opinion. I'm sure some people post truly offensive things sometimes in some places, but I really didn't see it in this FB group. People would even preface their posts with "I'm struggling with how to word this", etc.., and then they would say something personal or emotional. The response would be "I'm closing this post for comments because you are offensive (insert adjective), and you cannot write this way on this forum", or something equally embarrassing.

I was appalled by the lack of common courtesy, and didn't want to be associated with such blatant ableism.

Not all of us older folks think that way. Those of us who have been paying attention know that this is not the case.


What kind of "autism group" was this? Autistic peer-led or professional-led?


To avoid taking this thread off-topic, see my separate new thread General thoughts about college education (and jobs).


Ugh! Sounds like these "facilitators" are rather clueless about adult autism (or at least about the majority of autistic adults), and about the lives of disabled people more generally.


Well, friendship just happens to be the topic of my main support group meeting (via text-based chat) next week Tuesday. We're mostly NYC-based but others are welcome too. (Please RSVP on Meetup.com if you plan to attend.)

What kinds of topics did your group focus on, if any?

If it were up to me, I would have divided it up based on some criteria. Exactly what kind of criteria would make sense would depend on who is in the group. Keeping already-existing friendship groups together would probably desirable.


I agree that keeping political discussion out of a peer support group is important. Alas, it can sometimes be difficult.

In my own groups, we eventually decided to have two additional separate groups just for discussion of politics -- one for general politics and one for autism politics). And, in the politics discussion groups, there's also quite a bit of meta-discussion on how to discuss political disagreements in a civil manner, how to politely tell someone they said something that offended you, etc.

It became easier to keep politics out of the main peer support group meetings after we created the separate politics discussion groups.


Very important, yes.


I would suggest asking one of the facilitators to talk to him about it privately and explain to him exactly why it is annoying.

Yes this sounds like the online group my teenage daughter was involved with called "teen talks", The teens were girls and NTs with social anxiety, ADHD and one or two HFA and others with various other conditions. One of the problems I had was the group moderator would talk about boyfriends and sex which my wife and I weren't comfortable with. I could hear them encourage my daughter to talk about whom she has a crush on at school. It resulted in my daughter getting obsessed with boys.