Your gripes about peer-led autistic adult support groups?

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What kinds of accommodations were they asking for? Do you feel that the accommodations they wanted were themselves unreasonable, or just that they were unnecessarily nasty about it?


How long ago was this?

I'm under the impression that this was a much bigger issue 5 to 10 years ago than now, and mainly because the parents' groups and professionals were insisting on "person-first" language. (See the separate thread Identity First Language regaining acceptance.)


What kind of project was this?


I think it's important to distinguish between what I call "autistic-friendly social skills" and efforts to blend in with NT's. By "autistic-friendly social skills," I mean the kinds of skills we would need in order to get along with each other (and with autistic-friendly NT's) even if we were not under any pressure to conform to NT norms. On the other hand, by "efforts to blend in with NT's," I mean things like fake facial expressions, fake body language, forced chit chat, and pretending to enjoy things we hate.

I think it's highly desirable to have autistic self-help groups that focus on learning autistic-friendly social skills. On the other hand, efforts to blend in with NT's are a known source of mental illness for autistic people.

Last edited by Mona Pereth on 10 Aug 2021, 1:45 pm, edited 1 time in total.

It sounds like you are referring to masking which I heard can cause burn out.

Right, and this is one of the reasons why some autistic people react against "social skills training." Too many "social skills training" programs, apparently, are training in how to mask.

Last edited by Mona Pereth on 10 Aug 2021, 9:04 pm, edited 1 time in total.

Something I have been trying to politely explain to Mona is that target for these "peer led" adult support groups don't actually exist.

Here's why. High functioning people with Aspergers who are capable of communicating and socialising (the type you and Mona are aiming for) don't need these type of groups because they already have NT social networks and NT friends and partners. It would be nice of them to spare one of their time to volunteer, but why should they, when they are living normal lives?

The segment of Aspies you desire who don't have friends or a partner may consider joining these groups are too busy trying to establish a career and hold down a job (it takes them more effort to assimilate with NTs so they are tired and exhausted after work). Whatever free time they have they want to play online video games or fix stuff at home.

This leaves the unemployed Aspie adults who live with their parents or in a group home, They don't want to join these groups because they are social awkward or anxious about comorbid conditions they have. It takes some effort to get them out of their shell.

That leaves the parents of lower functioning adults who see these peer led adult groups and proactively bring them. Alas this group Mona and you don't want to see or help because Aspies are basically no different to NTs and don't really want to spend time around people with intellectual disability.

So these are the challenges.

Not all lower-functioning people are unemployed, or live with their parents / in a group home.

Some have pushed themselves past the point of no return, in the absence of a diagnosis or meaningful therapeutic support. Some have children. Some are caring for elderly parents. Some live alone, or isolate almost entirely from society. It's easier and easier to do this with work-from-home opportunities, savings, or family support.

I'm lower functioning but I worked many years because I had no choice as a single mother. When the choice is "Keep your income or keep your child", people mask, compensate, or go to desperate measures to keep their job. I was lucky to have a union and job protection. My career also provided me with the opportunity to claim LTD when I eventually suffered nervous breakdowns and a stroke from exhaustion. I will earn a pension as well.

I have a very hard time finding online, autistic support communities that acknowledge people being lower than HFA. There's a lot of assumption and presumption that anyone with clever writing skills or a history of employment must be higher functioning.

These are exactly the types of stereotypes we need to address.

I'd suggest addressing this to Mona and Dox47 as they are the ones who have a sign at the door of their support groups saying "low functioning folk not welcome"

I've given up looking for the types of support that I need.

I've tried quite a few options, but I always crash and burn when people can't understand me.

It always comes back to "you aren't welcome here, because you're an enigma".

I'm happiest here. It's not perfect, but it's better than blatant rejection or humiliation in other places.

I've made some very close friends, and the word games are a nice distraction to my day.

All the rest is gravy.

I think the reality is that the vast majority of autistic adults are members of online groups.

My daughter loves online support/social groups who have a real diversity and mix of people, backgrounds and functionality.

Where aspies might want to meet other aspies in person is where they share common interests e.g. coding, comics, video games, trains etc.....otherwise (I'm guessing) they would get bored.

The danger with aspies meeting other aspies to discuss coping with NTs is that it could become an echo chamber to diss NTs (I see this sometimes on WP). That's not healthy.

Apparently the sign wouldn't work in your case as you failed to read the part in my post where I specifically said we didn't turn anyone away.

In what sense are you "lower functioning"?

Back in the days when "functioning" labels were used (informally) by the relevant professional establishments, "high-functioning" simply meant IQ test score above 70, and "low functioning" meant IQ test score below 70. Based on your writing style, I get the feeling that that's probably NOT what you mean.

Some other people have used the term "high-functioning" to mean "capable of sufficient masking to appear totally NT" and "low-functioning" to mean "obviously weird." I get the feeling that that's not what you mean either.

So I'm wondering what you mean when you describe yourself as "lower functioning."

By the way, should you ever choose to participate in any of my online chat groups that you might deem relevant, you are welcome to do so.

Last edited by Mona Pereth on 10 Aug 2021, 11:00 pm, edited 2 times in total.

I'm assessed Level 2, with "needs significant support", and "at high risk" in every category.

I have comorbids --

Two strokes (2015, and this past December)
C-PTSD from violence and online sexual assault by a group
Childhood sexual assault
Combined presentation ADHD
99th+ percentile MDD
99th+ percentile GAD
Agoraphobia with panic attacks
Scopophobia
Mutism
Multiple phobias / trauma triggers
Alexithymia
Sensory Processing Disorders (off the chart) - misophonia, photophobia, etc
Sleep Disorders
Public meltdowns
Private meltdowns
Face blindness
No masking skills
Very dysfunctional family including an alcoholic, narcissistic mother
25th percentile Verbal IQ
5th percentile Non Verbal IQ
Plus single parenting for 25 years:
Child 1 -- Adopted, crack mother, ADHD, ODD, violence and defiance
Child 2 -- ASD, ADHD, Lupus Nephritis, Epilepsy, CPTSD

But I'm not supposed to talk about it, or I'm seen as "needy", and told that levels don't exist.

I've been in trauma therapy 12 years. I do speech therapy and comprehensive OT.

I have a regular neuropsychiatrist, too.

I don't have a low IQ in writing, so people don't know what to make of me.

I don't ask for support very often. It's very rare. Most of the time I just want to have fun, play games, or listen to music.
I try to help people as much as I can. I think I offer quite a bit to others.

I have a lot of friends online.

But .... there's always a danger that I can't express my real needs. I can't make mistakes. I can't be myself.
I'm always on guard with my emotional regulation.

I feel a need to convince people I'm not HFA. A lot of people don't believe me, because I can write well.
I've even felt obligated to post my test scores, to validate my existence.

One member said I was a liar. One said I wasn't real. It's unbelievable how judgemental people can be.

I always feel a pressure to act like I'm HFA, or else go to a group for people with low IQ who live in group homes.

Surely, there must be a middle ground somewhere.

I can't be the only person with a life story like my own.

Last edited by IsabellaLinton on 10 Aug 2021, 9:58 pm, edited 1 time in total.

So are you going to have a requirement that adults with IQ < 70 can't attend your support groups? global IQ doesn't identify social deficits. I've also come across people with low IQ who function quite normally socially. Your criteria borders on apartheid.

Why not just call your support "Peer led Adults with high functioning Aspergers Support" then at least you won't be wasting people's time,

I almost forgot - my adaptive functioning scores. (Plus more proof that I exist).

[sigh!]

That's a vast over-simplification at best.

The element of truth in your statement is this: As stated in my earlier post here, one of the types of groups I think the autistic community needs is career-oriented groups for autistic people who work, or want to work, in various specific categories of professions / occupations / jobs. (See Autistic workers project.) Obviously these groups would be of interest only to people capable of working in the relevant careers.

However, another type of group I think we need (see Longterm visions for the autistic community) is hobby-oriented groups centered around specific hobbies or activities. These groups need not be limited to work-capable autistic people. And, depending on the specific type of hobby/activity, some of these groups could easily include intellectually disabled or otherwise severely disabled autistic people.

Then there are the support / self-help groups. Basically, almost anyone capable of participating on Wrong Planet without getting banned is probably also capable of participating in an online chat-based support group. (They may or may not also be capable of participating in an in-person support group.) This intrinsically excludes anyone who is nonverbal in the sense of lacking any language-based communication ability whatsover, but it does not exclude, for example, literate non-speakers.

Of course not. You are seriously, majorly mis-reading my posts. Please read them again.

I believe you when you say that you are Level 2 and that you need significant support. I certainly don't think you are lying.

I'm just questioning the appropriateness of the term "lower functioning."

It seems to me that the DSM 5's levels and specifiers are a lot more nuanced than the old "high-functioning" vs. "low-functioning" dichotomy.