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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

  • When I lived in Northern Ireland, the vast majority of the groups I attended were mainly parent-centred, and it sometimes felt as an Autistic Person, whilst they were happy for me to attend, they didn't really seem to like my presence at times, although no one ever told me directly this was the case. 

    As someone who has spent a lot of time volunteering and working at Autistic-led and Autistic-centred events and groups, I will say this; it is a lot of work to take in, and it can be mentally and physically draining. You will often be working with others who are also struggling, and that can start to affect your own well-being. 

    I will also say, that in my experience, the feeling of being able to connect, support and assist other Autistic People can be a wonderfully fulfilling and positive experience, but sometimes it will also be extremely difficult and frustrating as well. It's important at the outset to ensure the guidelines and rules for entry into these social groups are clear and are agreed to in advance. In particular, make sure that it is explicitly spelt out which topics are and are not suitable for discussion. I have been part of many groups where most of the friction comes up from topics that have been very emotionally distressing, and sometimes were not suitable for discussion, but this was not made clear in advance. 

    Please feel free to drop me a message, if you wish to ask me anything, or you can even reply to me here and I can respond so that others can perhaps learn from my experience! 

Reply

  • When I lived in Northern Ireland, the vast majority of the groups I attended were mainly parent-centred, and it sometimes felt as an Autistic Person, whilst they were happy for me to attend, they didn't really seem to like my presence at times, although no one ever told me directly this was the case. 

    As someone who has spent a lot of time volunteering and working at Autistic-led and Autistic-centred events and groups, I will say this; it is a lot of work to take in, and it can be mentally and physically draining. You will often be working with others who are also struggling, and that can start to affect your own well-being. 

    I will also say, that in my experience, the feeling of being able to connect, support and assist other Autistic People can be a wonderfully fulfilling and positive experience, but sometimes it will also be extremely difficult and frustrating as well. It's important at the outset to ensure the guidelines and rules for entry into these social groups are clear and are agreed to in advance. In particular, make sure that it is explicitly spelt out which topics are and are not suitable for discussion. I have been part of many groups where most of the friction comes up from topics that have been very emotionally distressing, and sometimes were not suitable for discussion, but this was not made clear in advance. 

    Please feel free to drop me a message, if you wish to ask me anything, or you can even reply to me here and I can respond so that others can perhaps learn from my experience! 

Children
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