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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.

Parents

  • 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

  • in reply to TheCatWoman

    Yes, I’ve been reading around the topic since posting, and Patience definitely portrays a simplified version that probably doesn't match the reality, and the complexity on the ground.

    Your experience in that group sounds dreadful. It’s somehow baffling when spaces meant to support autistic people end up having the sensory profile of a busy shopping centre, run by staff who don't understand baseline communication needs.

    Thank you for sharing your experience. It’s a very helpful reality check.

Reply
  • in reply to TheCatWoman

    Yes, I’ve been reading around the topic since posting, and Patience definitely portrays a simplified version that probably doesn't match the reality, and the complexity on the ground.

    Your experience in that group sounds dreadful. It’s somehow baffling when spaces meant to support autistic people end up having the sensory profile of a busy shopping centre, run by staff who don't understand baseline communication needs.

    Thank you for sharing your experience. It’s a very helpful reality check.

Children
  • in reply to haciaelvacio

    Thanks I'm glad you found my reply helpful, I was afraind you'd find it negative, but it is the reality as I've experienced it, I really hope others have better ones. The group I went to couldn't cope with my lack of tech skills I spent 20 mins explaing to the woman on the phone how hard I find it and at the end she told me to join a facetime thingy they do and was totally shocked that I didn't know how to do it and didn't have the equipment. She sent me a map to get to the meeting place that was so tiny I would of needed something like the hubble space telescope to read it, she couldn't cope with me not having a satnav or similar on the smart phone I don't have.