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Support group experiences

haciaelvacio

I live in a smaller city, but there don't seem to be any general peer support groups around as far as I know.

I’ve toyed with the thought of eventually trying to set something up (in person, or perhaps online), but the reality is that I’ve never actually attended one myself, and I don't know what to expect. I certainly don’t have the energy to take on anything like that at the moment, so this is purely an exploratory thought for the future.

My only real reference point is what I've seen depicted on TV (like the social groups in Astrid or Patience), and I suspect the reality is rather different.

I would love to hear from anyone who has experience attending, belonging to, or facilitating an autistic or neurodivergent group. What format actually worked well (or didn't)? What were the main benefits, and where were the friction points?

If anyone would like to share your thoughts, please feel free to reply here or via private message if preferred or more appropriate. I'd really appreciate your insights.

PS I may be slow to reply, but I will read everything and respond when capacity allows.

  • in reply to Fibonacci Squid

    This is invaluable information, thank you so much!

    I'm heading out to work now, but I would like to read through what you’ve shared more closely later and perhaps ask a couple of follow up questions, if you don't mind. Absolutely no pressure to reply, of course.

    Thanks again!

  • The only one I went to was the most autsim unfriendly space I've ever been too, it might as well have been in a train station or shopping centre, it was anything but calm and supportive the staff were all NT's from what I gathered, didn't listen, asked what I wanted help with and then said they couldn't do that, it felt like there was some kind of magic words I had to say that would unlock everything.

    I'd love one like Patience goes too, but I reckon thats a TV fantasy of what autism support should look like and not the reality

  • I've done a couple of different support groups style things. One was highly structured and had a few (autistic and non autistic) facilitators. One of the things that really struck me was how easy things were that I'd struggled with at 'mixed' mental health support groups. The autistic peers also all always sat in the same seat, so I didn't need to worry about someone taking mine. We didn't look at each other while talking, that was fine. We also had a lot of developed coping methods in common (e.g. the vast majority of us used whiteboards, or flip charts or notebooks to have large visual lists of tasks).


    I also did a less structured 'problem solving' peer support thing a few times. These were for people who had autism related challenges occurring or coming up to basically get together and brainstorm. That was online which I found more difficult but it seemed to be okay. I got some useful tips from people, a bit like this forum really. 

    I personally felt that the main benefit was that we could relax a bit more, after a few sessions people stopped necessarily playing the neurotypical as much. What worked well was having a structured activity or structured topics that we were talking about, even if we brought those topics. Either specific talking points or a craft or puzzle or board games to do while socialising can happen around it.

    I did also try a 'neurodiversity group' (not impressed with the name for a start) at university but it wasn't structured and it felt like there were much more clashes of needs. It was mostly people with ADHD, the two times I went there was one other autistic person there, and some of the needs run in common but some of the others seemed totally alien to everyone around me or I felt uncomfortable saying that actually no the things they were struggling with wasn't something I did. I also really struggled with working out when to speak as people were going faster than I could keep up with whereas in the autism groups I'd done we deliberately left gaps to give people a moment to process.  I'm sure some more general neurodivergent groups do work or they wouldn't exist, but that one really didn't, and I didn't go back after the second week.