'Adults with Aspergers' support group - total dead loss.

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Ladywoofwoof
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13 Jul 2013, 11:11 am

An 'Adults with Aspergers' support group was started about a year and a half ago.
I went to begin with, but from my perspective it became such a complete dead-loss that I've given up bothering to go altogether.

It was run once a month, for a few hours in the evening.
The venue was nice (like a cosy living room), and provided for free as part of a local initiative.

The guy who runs the group was diagnosed with Aspergers as an adult, and gave a really good talk about Aspergers a while back.
He had no clear plan for how it would be run. The club has some sort of e-mail news-letter.

At the first meeting, there were a reasonable number of people who were adults with Aspergers.
It was possible to talk to other people who are adults with Aspergers, and it was a very informal kind of setting.
A lot of attention was being given to supporting this one woman who has severe autism, because she was having a lot of trouble with government-assigned carers and their inability to understand how Aspergers would affect her.

However with each following meeting there were more and more people who very obviously were not adults with Aspergers at all.
The young woman who was having a lot of trouble stopped talking about her problems at all, and just sat there for hours looking unhappy.
She was there with her mum, who seemed to see no problem with talking to the other people who didn't have Aspergers about her... speculating about how she might think or feel instead of just asking her directly what she thought or felt.
I found that incredibly rude, and not appropriate at all for that kind of group.

At the first meeting I spoke about some of my own problems.... namely that organisations often claim they are a certain way, but when you experience them in reality they're much worse - but then everybody acts like you're crazy for saying so....
And, that it's really difficult to know what to do with myself - because to all intents and purposes I have Aspergers (or so I reckon) but I was never diagnosed with it when I was younger. It sounds like it's pretty much impossible to get diagnosed properly through the NHS even as an adult male.... never mind as a woman. There's nobody within (at a guess) a hundred miles that can diagnose AS anyway.... kids usually need to be sent far away for diagnosis.
At that time, I didn't know anybody else who had AS.... I'd certainly never heard of Wrong Planet or anything like that.
I was going I think mainly to socialise, and to try and discuss my own and others' personal matters relating to being adults with aspergers.

There were perhaps 8 of us at the first meeting... which is an excellent turnout for this rural community.
It was nice... not cramped, and not too loud. Not too many strangers, and anybody who didn't have Aspergers/Autism was there to accompany an adult who did.

But well... that didn't last long.
Rapidly, more and more people began pouring in who didn't have AS... I had no idea who they were.... they weren't even with people who were adults with AS.... my understanding is that a lot of them had kids who either had been diagnosed with AS, or who they thought might have it.

Now, I truly do not mean to offend anybody by saying this. Not by a long way.
But my honest opinion is that those people shouldn't really have been encouraged to come to the group.
It's totally different to be an adult with AS (or suspected AS) than it is to be some NT who has a kid with AS (or suspected AS).
There's a lot more support for those kinds of people than there is for adults who have AS (or suspected AS) and the issues which they face are often totally different.
But the guy running it has the notion that "the more the merrier" and encourages them all to pile in.

The last time I went I actually had to sit outside of the room in the doorway, because there were 16 (16 ! !! !) people all crammed into this one small room the size of the average family living room. So there was literally no room to fit through the door.
There was no ventilation either, and I felt quite ill even during the previous meeting, because of 14 people being crammed into the room together for hours.

To begin with (at the first couple of meetings) the guy running the club would give a short speech of support and then encourage adults with AS (or suspected AS) to speak about whatever they felt would be helpful to discuss.

I was REALLY offended though the last time I went.
Because he gave a general speech about various organisation spokespeople who he was lining up to talk at the group, then declared "okay, I'll shut up now and let the parents talk".
Again I don't mean to be offensive saying this but my honest view is that the NT parents talk far too damn much at that group, and should really be encouraged to shut the hell up so that the adults with AS can get a chance to speak. It was far better as a group before that lot started to pile in. All a lot of them care about is themselves or their own children.... and (as I said to the guy who runs the group) I refuse to discuss personal matters in front of a large group of strangers who don't have AS.

He never really listened though, saying things like "Oh but it's okay to do that. We're all friends here."

Well, no it's not okay. Like I made clear.
I found that the group became really not pleasant to attend... it was just causing the kinds of problems which I was going to it to try and discuss & get a break from.

Many times during a natural break in talking (when it would be helpful to have silence to process everything that was going on, or might be a chance for somebody with AS to talk) all of the thronging NTs would spontaneously start up all sorts of dribble-minded conversations amongst their cliquey friends.

The last time I went I got incredibly upset because it just felt surreal..... people would be sat next to you with their back totally turned away, yacking on to somebody next to them about their hair or something. I just felt so utterly miserable, left out and unable to integrate into the group with everybody doing that constantly. It made me feel even more lonely and socially defective than I do already, which really does take some doing since that was the only time I even went out anywhere.

Nobody even noticed me crying, and it was only as the last few people were filing out of the room that the guy running the place noticed. But he ignored what I said about it, and just tried to tell me that it was a good thing... cathartic.... to "let it all out of the system" .... :evil: but I wouldn't need to let any damn thing out of my system if the way his group was run hadn't built "it" up in my system in the first place !

When I tried to talk about a problem I'd been having .... it was to do with my regret over becoming annoyed with an attractive young man who seemed to be being mean to me but I never realised that he had AS and now realise that all of the issues we had with our friendship were caused by one of the other of us having AS (or in my case at the very least having the symptoms of AS) ... he thought I had a problem with him because of him being 'a weird Aspie' and I really truly did not have a problem with that. I never even knew he had it likesay.
I wanted to talk about the tragedy that can come about as a result of people with AS being encouraged to try and 'pass for normal' and the confusion that can result even for friends who have the best of intentions towards those with AS. At the time I also hoped there might be a way to salvage the friendship.... but well, I think now that just leaving the man alone was the best thing to do.

Anyway, I tried to talk about that but people kept getting up and walking off.... eventually I talked about it with a young lady of about 15. She had never been to the group before, and was sitting there looking mildly confused as everybody else broke up into babble-groups all around her. She was really nice, and had a wisdom well beyond her years. It was good talking to her about my problem.
I would probably have got quite upset if she hadn't been there and the same thing had happened.

The other reason I bailed out of the group was because the guy running it seemed to have decided to have every meeting revolve around a speech from some organisational speaker..... with the expectation that everybody else at the group should just sit there quietly.
I have had a very abusive experience of the local advocacy group for example, and I don't think that it's appropriate to expect people with AS to get involved with that organisation. I'm not impressed with being expected to just sit there while one of the advocate speakers come to the group and spouts drivel about how massively supportive, professional and unprejudiced they all are. That's a blatant lie, if my experience of them is any indication.

The rest of the discussion just had nothing to do with adults who have AS or the issues they face.
Again, I really don't want to offend anybody here by saying this.... but as somebody with no diagnosis (an adult with AS issue if ever there was one) I honestly don't want to sit about at the group talking about all of the support which there is for kids who DO have a diagnosis.

I got fed up of people saying "There's X support for people who have AS" when they really only meant "There's X support for people who have medically diagnosed AS ; 99% of whom are kids, and that's all we really care about."

For a while I tried to ask for the main guy's help in finding out how to become qualified to diagnose AS (I think it's ridiculous that it's pretty much just NTs doing that especially given how many horror stories he has about getting diagnosed himself) .... but he was no help at all, and I don't think that he was really bothering to look into it. So, I gave up. Now I want to be a pro graphic designer and artist instead.

Once I stopped going, he also stopped sending me the group's newsletter.
... which to me had a similar effect to calling "make sure the door doesn't hit your arse on the way out, now."

At that time, I also discovered where all of the NTs had come from, and so quickly . They're from some previously established "parents with kids who have AS" group .... which had been lazily floundering along for ages with no real direction. So when the 'adults with AS' group leader started his group and began blithering on about kids who have AS while arranging assorted talks, they were drawn to it like a moth to a flame.... and word rapidly spread once the first one heard about his group.

I really am annoyed by that "I'll shut up now and let the parents talk" comment.
I'm not a parent, but I don't see why that means I should just shut up while a bunch of NTs parp on about their kids.
I spend a lot of my life being made to feel like I don't really exist or have a right to talk, and that was just really unpleasant to experience it again in a group that I regarded as a "safe" zone.

I was wary enough about going at all.... I just don't discuss personal matters with strangers normally, but reckoned that if most of the other people there were adults with AS (or at least AS symptoms) then that made it a lot less intimidating to go.

I can tell I'm not the only one who's naffed off about the group.
At the last meeting (the one where there was no room for me to even fit into the room) there were two new people there.... a cute young guy who I'd seen at the leader guy's talk about having Aspergers and wished I could have spoken to more.... and a fellow who seemed to be his younger brother. The younger guy looked utterly unimpressed and increasingly annoyed as NTs blabbered on about kids who have AS , and they left early.

Me and my mum reckon that it's most likely that he had been encouraged to go "because it might help with the problems you're having" but was as deterred as I was to turn up and find a room full of people wittering on about children who have AS, when it's supposed to be an 'Adults with Aspergers' group.... and that he got so annoyed that they both left early.

I imagine that by now every adult with AS has been driven away by that sort of thing.
I doubt that the guy running the group even cares, to be honest.... just so long as he gets "bums on seats" in abundance I'm sure he will decide that's just great.

I think the group was a total dead loss. I have no problem with parents discussing their kids who have AS.... but for the love of god why do they need to do it constantly at an "Adults with Aspergers" group, when they already have a flipping group for that ?
Wouldn't it have been better to invite the 'Adults with AS' leader to join their group and arrange talks at that.... instead of hijacking the 'adults with AS' group and trying to make everything about themselves and their kids ?

NTs are typically dominant socially.... letting so many NTs call all of the shots at the group killed off what I thought was a gently developing good social dynamic. I have to travel 32 miles (as a round trip) to go to the group, and it's definitely not worth bothering to do that now that it's so impersonal and NT-flooded.

If anybody here starts an 'Adults with AS' support group then please do not run it like this one was.
:cry: I think for me it's done rather more harm than good... and I regret going because of that.



Radiofixr
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13 Jul 2013, 12:10 pm

The two groups in this area I belong to are run by one a person who work with special education student and the other by an LCSW and the people in the group all are on the spectrum and if their parents come they get together with other parents and go out to a restaurant while the meeting is in session-no distractions from those not on the spectrum or interference from people who tell us what we need who are not on the spectrum.


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AardvarkGoodSwimmer
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14 Jul 2013, 12:04 pm

This is a cautionary tale. I mean, Wow. Obviously, this guy should have said to the first parents, This is a group for Adults on the Autism Spectrum, Let me first check with the adult members. Then maybe he could have told them, you're welcome to come to the presentations and the informational meetings. But as far as the discussions, that's for Adults on the Spectrum only.

And I think you've read the situation correctly. For whatever reason, this clown ended up being interested in "bums on seats."



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14 Jul 2013, 4:22 pm

This is an excellent example of how NOT to run a support group. Be glad that you left it.

As someone who works with young adults with ASD, I see behavior resembling the situation with the young woman and her mom all the time...where the NT parents talk about their young adults to the other NTs (instructors/parents) while their young adults are right there.

They will often do this to me too, since I am an instructor as well and pass as NT...though I try to diffuse this by changing the subject. It is completely disrespectful and makes the young adult feel incapable and inadequate. No wonder the young woman shut down...she wasn't being heard. How the h*** is that a support outlet for her when no one is giving HER support?!?

There absolutely needs to be more "safe spaces" where people on the spectrum can express themselves and provide peer support without having parents and/or professionals dominate everything. I am not saying that having their presence is bad every time, but the fact is, both groups need to vent, and they need to do this in different ways.

The guy running the OP's group could have divided the group into two separate meetups: one for the people with AS and one for the parents so that each group is acknowledged and had a chance to be heard.


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Ladywoofwoof
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14 Jul 2013, 5:29 pm

:-) Thankyou everybody for your supportive replies.
It's good to know that I'm not being unreasonable in my expectations - or overreacting to have got in a huff and refused to go any more.

8O I think that "bums on seats" was his actual phrasing.
As in, "The more bums on seats the better"

Something about that turn of phrase kind of offends me for some reason....
:? Perhaps it's because of being referred to primarily in terms of my arse rather than my mind/input.
Or maybe it's because I think it's such an impersonal way to refer to everybody.
Or maybe it's the "quantity rather than quality" approach to the group which offends me.
I'm not sure. Maybe it's all of those. Do you guys know what I mean about that, though ?

Looking now, I see that sometime during January this year the timetable for the venue has stopped listing the group as being an "Adults with Aspergers" support group, and is now listing is as an "Aspergers support group" .... but this has happened a long time after I stopped going because of the reasons I mentioned..... like, a year after that or something.

At the absolute very least I think the guy running the group should have officially declared that it was no longer an 'Adults with Aspergers' support group before the last session which I went to (The "I'll shut up and let the parents talk" meeting) ; instead of there being (what to me is) an awkward, confusing and uncomfortable anxiety-fuelling 'drip' effect.... where it was done more furtively over a period of time, and adults with AS (or AS symptoms) were just left to figure that out on their own.



Ladywoofwoof
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14 Jul 2013, 5:36 pm

Looking a bit closer at that venue timetable, I have also just noticed now that the last reference to the group was back in March.
It normally runs monthly, and the timetable lists events even if they have been cancelled or postponed.... so I wonder whether the 'Aspergers support group' went completely down the tubes back in March.

:roll: 8O :? :?: :o :wink:



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14 Jul 2013, 5:52 pm

I hope the frequency of things like that described in the OP drops as more offline groups are run by Aspies.


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Ladywoofwoof
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14 Jul 2013, 6:09 pm

The guy running the group has/had diagnosed Aspergers.
He was diagnosed as an adult, and gave quite a good talk about it to the local community.

:? Unfortunately though, having AS doesn't make people immune to being kind of a tool about running an AS support group it would seem.