Has Anyone Here Have/Had Difficulties In Autism Groups?

[Amethystgirl]

So last fall and winter I was in a virtual Asperger group and I had difficulty knowing what to say to people in the group. I was silent quite a bit of the time and when I did speak I didn't say very much. It's somewhat weird that I was silent in a virtual group and yet in real life I'm often loud. Also one of the leaders of the group addressed everyone in the group once saying " hi friends". This leader I emailed said I knew people in the group but I went to that group for some months and didn't really learn anyone's name except for the leader and 1 woman's name I remember and the people in the group kept changing so I could barely keep track of anyone's name. I don't feel comfortable thinking of a bunch of strangers as "friends". I haven't been to the group since January. Anyone have a similar experience in a Asperger/autism/disability/mental illness group?

 

[Misty Avich]

Yeah, I went to this group thing over 10 years ago, not exclusively for autistic people but for people with any mental health conditions or neurological disorders/disabilities, although no doubt there were likely a few autistic people there. But I felt very shy for some reason, and hardly spoke a word to anyone. We sat around a table doing arts and crafts, but I found it more relaxing to sit and colour whilst listening to rather interesting conversations between these two loud people who talked about everything and anything. I don't think they were autistic but I could tell they had a learning disability. Usually I'm sociable but I just didn't know what to say to anyone there.
I often feel embarrassed about being shy because I always think people judge me for being this mute person sitting in the corner like a mannequin, even if they're Aspies or other non-NTs.

 

[Amethystgirl]

One thing they did in the the Autism was talk about mental health. I didn't want to talk about my mental health with people I don't know. And another thing, the group wasn't my idea. My worker suggested the group to me and she mentioned about me making connections, which is something didn't happen.

 

[Misty Avich]

Yeah, I'm more likely to form connections with people I meet in the workplace (which usually are NTs) than attending a group session for people with disabilities/mental health.

 

[Amethystgirl]

I felt my worker was being pushy about her idea and I didn't like her so called encouragement.

 

[Suzanne]

I have joined a few virtual groups before being formally diagnosed and did not enjoy the atmosphere and in truth, anyone can join, which means probably not everyone has Aspergers.

I know a few who are at least neurodiverse and we get on fabulously, so I sense that if I met someone with Aspergers, we would get on, because of knowing how neurotypical this world is.

This is the first forum I have stayed with and feel that I am amonst like minded people.

 

[paloftoon]

I felt my worker was being pushy about her idea and I didn't like her so called encouragement.

They were probably being paid to do that to some extent, or it's a reputation thing

 

[Seladon]

Sounds as if the size of the meeting and the rotation/change in members caused you anxiety, @Amethystgirl? (please say if that's not correct). This is natural for many ASD people; we can struggle with surprises, the unknown, multiple sources of mental/sensory input, and having to adapt to speak to different people at once (how does one wear so many masks at the same time??? Argh!!!) No wonder you've felt ill at ease. Perhaps a smaller or more fixed group would suit you better?

And it's an awkward. painful and isolating feeling like you can't speak up in a group or follow the discussion, I get that too. Generally, though, this reluctance can be overcome by pushing through and past it, or even just sitting with it and honouring it/hearing it out until the anxiety dies down--probably not the answer you wanted, but it's true! Less pressure on yourself from yourself to speak could, ironically, liberate you from the stress of masking, performing, inhibiting etc.

As for ASD/ND groups, fwiw I have had a few bad experiences, however that was because of nature of said groups not separating and streaming participants by function level, education level, bio sex, etc. Am all for inclusion, and not saying we should be segregated, but if you're trying to run therapy and connect vulnerable people with like minds, you cannot traumatise or endanger one group just to tick a box, and because you were too lazy to administer group support properly.

 

[paloftoon]

I suggest looking for other group(s). I can understand why it's uncomfortable talking to people who are essentially strangers because there is too much turnover. It sounds like a safe space, but it doesn't feel entirely humanizing.

Especially if you aren't able to build personal friendships with at least someone else before they leave, etc.
People working in this environment- you can safely assume you can't be personal friends with them outside of the group because they are there to work and it might be the unspoken conflict of interest sorta deal. I never liked feeling like I am always feeling lower or never valued enough in that sense.

 

[Amethystgirl]

The size of the group and the talk about mental health bugged me but I don't really do well in most kind of groups. For example I went in Special Olympics and I couldn't make friends with anyone because quite of few of the people are low functioning but the problem with the autism group the virtual autism group are too high functioning. I don't really fit in any group very well since I'm in the middle, not low or high functioning.

 

[Amethystgirl]

They were probably being paid to do that to some extent, or it's a reputation thing

 

[paloftoon]

The size of the group and the talk about mental health bugged me but I don't really do well in most kind of groups. For example I went in Special Olympics and I couldn't make friends with anyone because quite of few of the people are low functioning but the problem with the autism group the virtual autism group are too high functioning. I don't really fit in any group very well since I'm in the middle, not low or high functioning.

That's tough. Try regular groups that aren't specifically for on the spectrum. Try to pick interests you can obsess about even and look through meetup.com. Those you have more in common with, it'll be easier to build to where you need to be if not there at first.

Learn as much stuff as you can and be as independent and healthy as you can be so that you can level well enough with the higher functioning people.

Pretty much all of my experiences are people being too different and/or narrow-minded or being too low functioning for me, but I have not been around people that have been too high functioning per se except for video games. My love of video games was strong enough that I belonged and I had my own little niche at the time, but people didn't respect me as a person ultimately even though I held my own enough.

 

[jsilver256]

The size of the group and the talk about mental health bugged me but I don't really do well in most kind of groups. For example I went in Special Olympics and I couldn't make friends with anyone because quite of few of the people are low functioning but the problem with the autism group the virtual autism group are too high functioning. I don't really fit in any group very well since I'm in the middle, not low or high functioning.

I have the same issue with my child. He is ASD2 but gifted. The ABA program coordinator had never seen a case like him, where he clearly needed therapy but also was gifted. When I talk to parents, it is either minimal support ASD1 or they have much more severe cases. I'm grateful to have a child that is not IDD but I am surprised at how rare it is to have strong autism traits co-occurring with giftedness. The media would have you think that Temple Grandin types represent the norm.

I haven't attended any autistic meetup groups but I wouldn't try either due to the language barrier (sign language for me).

 

[Steelbookcollector217]

and at these types of social meetup groups, the people in attendance are male dominated

 

[MNAus]

My personal feeling is that having autism doesn't represent enough of a shared experience or shared interests to spend time dedicated to sitting with a group of autistic folk. I like this place because I can contribute where I wish. There's quite a lot of posts here where I feel I have nothing to add, nor nothing really to gain by joining in. I would guess there are many people here who take absolutely nothing from my posts. As it should be. The idea of spending time with people purely because we have the same disability is bizarre.

I have the same issue with my child. He is ASD2 but gifted. The ABA program coordinator had never seen a case like him, where he clearly needed therapy but also was gifted.

I guess it's not super common, but I'm surprised your ABA coordinator is surprised. My two are really quite clearly challenged and will need a lot of support ongoing, but both pretty smart. Not sure it's super unusual.

 

[vergil96]

If you want to talk about it, what kind of support does ASD-2 require for a child versus ASD-1?

 

[jsilver256]

If you want to talk about it, what kind of support does ASD-2 require for a child versus ASD-1?

This might be inaccurate, but this is my mental categorization:

ASD1 : Mainstreamed with minimal assistance. Like extra test time, sensory breaks, or something.
ASD2 : Unable to be mainstreamed. Requires ABA or special ed or full time aides at school or some combination.

 

[vergil96]

This might be inaccurate, but this is my mental categorization:

ASD1 : Mainstreamed with minimal assistance. Like extra test time, sensory breaks, or something.
ASD2 : Unable to be mainstreamed. Requires ABA or special ed or full time aides at school or some combination.

Thank you for the explanation

 

[MROSS]

I attended a few meeting several years back. I sense that the other participants were experiencing challenges more limiting than my own challenges.

Many support groups don't last long - as many members increasingly feel that support groups are not beneficial. Any specific groups that have lasted for several years, and have large memberships?

 

[VictorR]

Having been in a number of mutual/peer support groups and communities, including this one, and seeing many of them change over time depending on, my observations would be...

1. The greatest value is usually to someone new to the community, whether through self discovery and/or diagnosis, and being able to share stories and feel less alone.

2. Once someone has accepted who they are, after an initial flurry (or in the offline world, going to several events), the majority will move on. There's nothing wrong with that, and in a sense, the group has fulfilled its purpose in being a safe space to learn more about the spectrum.

3. A small number may hang around, whether occasionally, or as regulars. Some may be lurkers, being a member of a community for many years but seldom making a post or attending an event. Some do so because they have difficulty making connections otherwise. Some do so because the community provides a sort of connection, but without the commitment level of friendships. Others may find it a safe space to practice communication.

4. An inevitable challenge will be conflicting needs - for example, one person's favourite topic is a trigger for someone else. A group can try its best to identify and eschew potentially sensitive topics, but leaders / organizers will always face the difficult challenge of inclusiveness (and recognizing that some folks may be inadvertently coming off as offensive) and maintaining a safe space. A variant of this would be members experiencing significant depression who who use a peer group in lieu of professional help - since while ranting and letting off steam is okay, someone who regularly brings a lot of negativity to a group and doesn't contribute back can lead to other members experiencing support fatigue and burnout, placing the entire group at risk.

5. Groups that tend to have the highest recurring turnouts are focused around some sort of activity, be it board games, hiking / nature walks, crafting, or anything else. Basically, something else besides just chatting in general.