Support group experiences

Hello TheCatWoman,

I have the same expereince as I drive a 50 year old Land Rover using my eyes and a map or from route memory. I drove to Suffolk and back using a paper map. Sure, I took a few wrong turns but worked it out. As for sat nav, pre sat nav I had one or two cars asking for direction but post sat nav it is almost every car. People lose the phone signal and Google maps and have no idea where they are.   

I wanted to check back in and thank everyone for sharing your experiences.

Reading through the replies made me think about what actually makes someone belong to a group or a place, the difference between belonging that feels natural and effortless, versus belonging that feels like a constant effort of negotiation.

Have any of you ever experienced belonging somewhere truly, being genuinely yourself, without having to sacrifice something integral to fit the space?

Thank you again for all the insights.

That lived experience work sounds really worthwhile, and I'm glad it has worked out for you. It feels to me that connection happens much more naturally when people are focused together on a shared, practical task rather than just sitting in a room trying to socialise.

​I've discussed this with my therapist, who suggested looking at local practical initiatives, like conservation or voluntary work, where the common ground is the task itself. I admit that at the moment I'd rather do something with others than talk.

I went to one regularly thrn semi regular and one week I decided to attend as I was in the area and had some time to kill before I went to see the amazing digital circus movie and thought I'd go see everyone it was shut and without use of Facebook there's no way for me to fidbout if they moved or closed they have no website nothing 

I've never actually attended one so I can't say what it is actually like but ones in my area are all aimed at those with high support needs, no independence and are always during working hours. This is great for those individuals but not great for those of us who do work and are able to live alone but need a level of support with social interaction etc.

Same here.  There's nothing local to me.  I also toyed with the idea of creating one and posted something to see what interest there would be on local social media.  The only uptake were people who work with autistic kiddies, or parent carers.  Not quite what I had in mind.  Just wanted a space for Autistic adult to do whatever - manage our own interactions, following our own interests, not be organised by others.  Hey ho!  I do some lived experience work now locally and oddly have found the contacts I was looking for organically through that.

NAS95189 said:

Neighbour 1 : DO YOU REMEMBER COLIN MITCHELL WHO LIVED NEAR BRENDA STEPHENSON I HEARD HIS SON NOW LIVES IN AUSTRALIA

Neighbour 2: YES COLIN HE USED TO WORK AT THE FACTORY OFF THE INDUSTRIAL ESTATE THAT'S ABANDONED NOW

Heh. That's a dead give-away of NT.   I'd be suspicious they were trolling for 'funny' stories about the [insert insult of choice] to amuse their pals in the pub.

Why would someone need to be a good team player to be in an autistic group? Were you split into teams to do things? I would have been out of the door straight away, I'm a terrible team player, my brain freezes ad I become sort of super autistic and dyspraxic

I attended a local support group until it changed venue and time. It was a huge mixed bag, what I hated the most was how every week it was different people, and some people were "good crack" as they say, and some weren't good team players, and that's putting it nicely. It was set up by a local autism charity which for a very small and remote area I cannot criticise to be honest, they did well and the staff were kind and helpful.

It started off fine, a bit dry, a big issue is "adults" is a really broad category. An 18 year old is technically an adult, so is a 30 year old, and a 50 year old, and a 65 year old. I was the baby of the group barring a woman just one year younger. I never ever bonded with any service user, but at times it was pleasant and light hearted fun. I'll never forget a very nice older man explaining how fraking works. There was another man about a decade older than me I occasionally see around town, we exchange hello sometimes. I wouldn't say my interests are that rare but no one there shared mine at all. 

Sadly when things are free they're open to abuse, enter the "neighbours". Two people who, conveniently, lived about 5 doors from each other, and yet both didn't know they had autism until they saw each other at the group....aye...yeah right.

They were awful. I know this sounds like hyperbole, it really does, but please believe me when I tell you this was what the group became.

Craig : Ah you'd have loved Robot Wars then!

Me : Ah yeah, I remember Robot Wars, I think the last season I saw was the one with Tornado and-

Neighbour 1 : DO YOU REMEMBER COLIN MITCHELL WHO LIVED NEAR BRENDA STEPHENSON I HEARD HIS SON NOW LIVES IN AUSTRALIA

Neighbour 2: YES COLIN HE USED TO WORK AT THE FACTORY OFF THE INDUSTRIAL ESTATE THAT'S ABANDONED NOW

I quit the group, but somehow, someway down the line it did come out neither were autistic. I don't know what their motives were and I'd doubt the service would divulge. Anyway, here's a funny one, one day Neighbour 2 turned up on his own, now THAT was funny. Every single person ignored him, and after about 30 minutes he walked out in a huff without saying a word, he looked absolutely fuming. "Hey hey, goodbye" comes to mind, but I can't lie as I type this ELO's Mr Blue Sky comes to mind, like a  big, ugly cloud leaving a room to give us a gorgeous blue sky. 

A week or so later, an email went out, "a group for ADULTS WITH AUTISM". lol.

Hi, I have a few things to say about my experience of autism groups.

You see my situation is quite unique, because I'm autistic but also completely blind and have ADHD and mental health challenges. I really struggle to relate to people in a lot of autism and disability spaces because I have this combination of needs going on and I also do have significant support needs in the sense that I attend an autism day centre with one to one support, can't work or live alone and all that. When many of the discussions are focused around things like masking, working and those kinds of things I just can't relate and feel alone because my experience is so very different from theirs. I also notice that many groups appear to be quite unstructured spaces where people can just chat which works for some people but not for me. I need groups that are quiet and well structured so I can actually participate.

I don't play video games either, or any games for that matter, I'm glad to find myself no longer alone in that.

I think its part of some sort of weird trope that if you're autistic then you must be good with tech and only relate to the world through it.

I tried autistic groups but I found them reallyyyy boring.. I go to different groups now. The autism groups were all online and just plain boring. All about video games. I don't even play video games. Plus one the staff said I wasn't normal too. Laughed back at it lol. People keep telling me to play video games. I don't like video games! It's like people see an autistic guy and think " give him video games" annoys me. 

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.

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! 

Your reply has given me a lot to reflect on.
I've looked into some research, the guidelines and practical logistics since my first post, and it’s clear just how much careful planning, structure and energy is needed to make a space like that actually work well. I had naively assumed that once a few basics were in place, things might just tick along, but the administrative and facilitation load seems enormous, and also we all are so different and have so different needs.

While I have some good experience with teamwork, facilitating something like this would demand far more energy than I have currently to spare. I’m definitely going to park the idea for the foreseeable future.

Thank you again for such a detailed, practical breakdown. It has been extremely helpful.

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.

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.