Social groups in west midlands

Hello everyone,

Hope u are all well and life is treating you well.

I am thinking of joining a social group for adults with autism

Does anyone know any groups to join or recommend any in the west Midlands?

Kind regards

Becky 

Parents
  • Maybe try contacting these guys to see if they run or know of any support groups:

    www.autismwestmidlands.org.uk/

  • They do a few groups, mainly post-diagnosis, and about explaining things concerning understanding your condition, also helping family understand it too from my experience.

    They also do a thing called Aspire, which is very helpful for people trying to get into employment, arranging adjustments, or explaining your condition to employers, and other people who may not understand how your condition affects you.

    I'm not too familiar with the social group stuff. It's a great resource though. Met some good people there. It's an amazing service as far as my experience with them. They really helped me understand the sensory side of things. They have also helped me with my problems with mental heath services, and a few other issues.

    I'd say from my whole experience since diagnosis, AWM have helped me understand more than anyone, how my condition affects me. I'd have had a much harder time without the help of a few people there. The "NT's" there are good people, and so are the autistic people I've been in contact with.

    It's worth getting in touch with them post-diagnosis. It has all been a very positive experience for me.

Reply
  • They do a few groups, mainly post-diagnosis, and about explaining things concerning understanding your condition, also helping family understand it too from my experience.

    They also do a thing called Aspire, which is very helpful for people trying to get into employment, arranging adjustments, or explaining your condition to employers, and other people who may not understand how your condition affects you.

    I'm not too familiar with the social group stuff. It's a great resource though. Met some good people there. It's an amazing service as far as my experience with them. They really helped me understand the sensory side of things. They have also helped me with my problems with mental heath services, and a few other issues.

    I'd say from my whole experience since diagnosis, AWM have helped me understand more than anyone, how my condition affects me. I'd have had a much harder time without the help of a few people there. The "NT's" there are good people, and so are the autistic people I've been in contact with.

    It's worth getting in touch with them post-diagnosis. It has all been a very positive experience for me.

Children
  • We can live in hope that maintenance will resolve the issues on this site!

    I feel like I'm being quite pro-active. It probably helps that I came out of hermit mode last summer and I'm now in 'social butterfly' mode, armed with my handbook on social skills courtesy of Daniel Wendler! But also with a desire to build friendships with other people with ASD regardless of what sub-type. I had a bit of a post-diagnosis wobble a couple of weeks ago but I'm mostly over that. One thing that I'm realising from talking with other people with ASD is that in some ways I'm lucky, this wasn't a good thing to happen but it's stood me in good stead for getting my ASD diagnosis, I've said quite a few times on here that I had an ABI 12 years ago on the 30th of March actually. So while many people who have recently been diagnosed with ASD are having to adjust to being Neurodiverse, to having a neurological disability, to having symptoms to manage and working out ways to manage them, or having to learn ways to look after yourself to ensure best possible brain function. I've already done all of that. Don't get me wrong, realising that I have ASD and fully realising how that affects me is still a big adjustment but maybe not quite as much as it is for some people. In some ways I feel like I've taken to it like a duck to water. I may of course have more wobbles in the future, but at the moment I'm feeling quite positive about things and embracing the whole Autism thing. I think the group that I'm getting up and running is having a therapeutic effect in many ways, It fulfils a need in me and in other people, it provides a much needed resource but at the same time it's giving me a reason to get out there and network with other ASD groups and build connections with other people with ASD.

    I think it's really therapeutic for all of us to chat with and share experiences with other people with ASD, especially when we're still reasonably newly diagnosed. I guess that we all have to go on our own Autism Journey and 'swapping notes' with others on a similar journey is part of that. The boy that you know sounds really insightful, do you ever find that you can sometimes struggle to make conversation with non-autistic people but with another autistic person it's so easy? I'm finding that a lot recently, I can just about manage a short ish reasonable conversation with most people but it's brain ache and I'm having to think about what I should say next/tone of voice/facial expressions/etc where as if my conversation partner is autistic then the conversation just seems to flow really easily. 

    I think our families play such a massive part in how we behave as adults. My dad never used to show his emotions but then he was a child of the 40's and men showing emotions wasn't really a thing then. My mum as I've said I'm sure also has Aspergers but there's more to it with her, I always found her very attention seeking, controlling, histrionic quite narcissistic actually and as I said, I've always tried not to be like her, I tend to fall more into line with how my dad was. I still remember when I was about 8, my mum had apparently heard somewhere that smashing plates was a good way to vent pent up emotion so she went into the kitchen and started throwing all the plates everywhere and shouting. It wasn't even like she'd lost her temper, she just decided to do it one evening. Which I found very odd, so did everyone else. It's funny how you mention that your grandad was one of the most balanced people you've ever met. My Grandma was like that, my dad's mum. She didn't talk much, probably because she was so deaf, but when she did say something it was grounded and based on common sense, I used to really value her advice, I spent a lot of time at my grandparents when I was growing up and was very upset when she died in 2012. I miss her calming influence.

    I think that I'm better than I used to be when it comes to weighing up whether applying that intense focus to something is beneficial or not. But as you say, once it kicks in it can be difficult and it seems that we don't choose when it kicks in! Have you ever had the situation where you've ended up perseverating about perseverating? This has happened to me, where I've been so determined so stop an obsession with something that stopping the original obsession has also become an obsession. So I've ended up with this horrible inner conflict where the original obsession and the obsession to stop it are equally as strong and it's like this constant push pull in my head, because I'm stuck on the original obsession but at the same time I'm also stuck on stopping that obsession. I don't know if I'm explaining it at all well or even making sense. But it's where the initial obsession is really strong but I've decided to apply that focus to stop it, but because the original obsession is so strong I'm not actually able to stop it despite maximum effort and neither can I stop the obsession to stop it because I've set my mind to that task and I've put too much effort into it to stop it and I won't let it beat me. Some kind of unique mental torture I'm sure! And yeah, probably not for any positive outcome!

    I'm not as much of a perfectionist as I used to be but I still can be, especially with certain things. If I've started a job then I like to see it through myself, not do half of it and then let someone else finish it. I think I may need to do some work on allowing other people to help me when they are willing as I would probably end up saving myself hassle and work and while they might not do it exactly how I would do it, they probably would do an ok job of it.

    I'm not spreading myself too thin with the group. I would have done when I was younger but I've got the sense now not to over do things, to rest if I need to rest and to leave something until the next day if I'm too tired. I'll update you on the group as I'm quite proud of what I've achieved in less than a month :-) I've got 3 other ladies to help me run the meet ups, one other with ASD and two non-ASD but with experience working with ASD (one OT and one support worker both friends of mine) I have been good and shared out responsibility for running the meet ups, we've got the activities for the first 4 meetings planned and we've organised one each (the main meet ups will be once a month, possibly with an in between one in a local coffee shop or similar) so in April we will be doing soap making; in May we're doing some sketching; in June we have a lady coming in to do a mindfulness and meditation workshop and in July we are going to be making Terrariums! I have the venue sorted, as I'm a Beaver Scout leader my Scout Group is letting me use the Scout Hut which is very kind of them. I've sorted out public liability insurance (I suddenly thought while buying the soap making ingredients - what if someone spills melted wax on themselves!) and I had a really informative conversation with a lady at HMRC the other day, she's emailed me a list of organisations that offer advice and support to people setting up social enterprises. I've made links with a couple of nearby ASD social groups, so we can share each others events, as the more signposting the better really. If there's just one group then that's one maybe two events a month for people to go to but if there's a few groups in reasonably close locality, all signposting to each other, then that is a lot more social events for people with ASD to go to. I need to make up a flyer tomorrow and get it distributed.

    I know what you mean about noticing more sensory stuff. I tend to say that I don't suffer too badly from auditory sensitivity but actually there's a reason why I have to go for a drive for an hour to level out after running beavers, an hour of kids screaming fries my brain! actually more than one sound at once tends to be bad for me. The other week I was at my friends and she was talking to me but then mine and her children came downstairs and were all screaming, while I was still trying to listen to what she was saying. I actually had to put my hands to my ears, I was like oh my days please stop! 

    I'm glad that you saw some friends and got out a bit more than you have been. I also need to buy some more shoes, or more precisely some more shoelaces. I have always had a thing about needing my shoelaces to be done up really tightly, I can't stand loosely done up shoes, but this means that I frequently break my shoe laces from pulling them too hard!

    Hope you have a good weekend!

  • That's ok, no worries. I'm also sorry for not replying earlier. I haven't been on here for a few days as I'm rather preoccupied with and hyper-focused on the group that I'm setting up. Incidentally, I met up with one of the other members last night, she is going to be one of the meet up team leads with myself and two others so it was good to meet her in person. It was good to sit and chat with someone else with Aspergers and talk about Aspergers, I hadn't planned to talk about that specifically but we just ended up having a 3 and a half hour conversation of "do you find that you do this?" and "oh yeah actually I do", symptoms comparison. I think/hope that it was mutually therapeutic. It's odd because it almost felt that there was a kind of 'autistic bubble' around us while we were talking! 

    No problem at all Kitsun! I'm still not getting reply from you and a few others.

    Sounds like you have been pretty proactive! It's good that you are meeting up with other people with Aspergers, you will learn a lot. There are a lot of similarities between us, but so many differences too. You can meet someone who has not many similarities, but you'll hit one aspect which can be really relevant to your own experiences. Then you'll learn how they manage, channel, or apply that aspect to life. Meeting any autistic person in general, not just in the "Aspergers category" can be enlightening. I know a 15 year old with "classic autism", who I met, and he had figured out a lot of strategies to cope with the sensory stuff, that were very, very, helpful. A very, open clever young man. In fact his openness, and insight have been very helpful. He's a friends wife's friends son, the minute he heard I was autistic, we got chatting, and I learned a lot. He's pretty confident, and one thing he said was "I just enjoy things that I find cool, and my friends like the same stuff, they think it's cool too". Sounds simple, but at the time I was in the "post-diagnosis fallout", and I looked at my friends and realised that the niche interests I have actually have benefited a lot of my friendships in a big way.

    I think it's a good point that not asking for help and having to cope can be part of a routine that we get into. I know also, being reflective, my own Mother could never cope with anything, but I feel that it was very put on with her not genuine, and after my parents divorced when I was 10, I lived with my dad and whenever he told me off he'd say "don't you dare turn out like your mother!".

    Lol, yeah, family habits, and ways do become part of that routine. My dad barely speaks, unless it's about horses, when quiz shows are on, or the odd thing. Very stoic most of the time except for sulks, tantrums, and the odd smile. My mom doesn't stop talking, but it's always about anything that isn't depressing, or stressful. Random stuff. If there is a problem she just plans it out and gets on with it. Never really too emotional, or demanding attention. Mom has had issues with mental health, but even then she didn't really express too much. I spent a lot of time being brought up by my grandparents too. My nan tackles things head on, crash and burn style, and my grandad was one of the most balanced people I've met. I try to be like him the most, but bits of the others do play their part. It's weird that they are all opposites though, but the slog on, be quiet about it, and get it done mentality is there in all of them. No wonder it took so long to be diagnosed. Oh well!

    I get how focus can affect it too. I know myself that once I set my mind to something, I will see it through, no matter what. Once I've committed to one line of action I can't change it. Even if there's a thousand reasons why it's the wrong course of action, once I've decided that that's what I'm doing, then that is what I am doing. I'm very fixed. Totally get the tunnel vision thing, I've always been aware that I had this but never used to understand why.

    It's a blessing and a curse. I'm the same. LOTS of people you speak to will be the same. The strategy I was given by my mentor is weigh up the effort, time, and stress, against the end result. It's hard to put into place once that thing kicks in, very hard, but the times I've put it into place, and just thought *** it, it's like I've beat something. It's great when it's for a positive outcome, but that focus can be soul-destroying when the situation is negative. The smallest thing can keep you awake at night, and eat at you all day until it's over. Sometimes for no positive outcome.

    I also think partly, I think that if I allow someone else to help me then it won't get done in the same way that I want it to be done. I can be a bit of a lone worker in that way, there are often people that would help but I want to do it myself. I guess maybe though people want to help.

    That's another thing, control, and perfectionism. I think Voltaire said it, "Perfect is the enemy of good". You can slow things down, or ruin them by getting too fussy about it. I'm a perfectionist, but I'm trying to let it go. I won't cut corners, but I wont stay awake for days, or do something alone, if I don't need to anymore. The amount of things I've wrecked trying to make it perfect is long!

    Focus can be a useful tool. Even before I realised why I have that focus, I have been aware of it and have learnt how to harness it to my advantage. I used it to get my eldest over the worst of an eating disorder a few years ago and now with the group, I'm aware that my hyper-focused state may only last a few months but I figure that if I get all the ground work done while I'm in that state then I'll have all the foundations in place for when I'm not as focused. 

    I think it's having that awareness of when to apply it, now you have a diagnosis, and are beginning to understand how it is a part of you, you can use that reserve when you need to. It sounds like you already do! I'd say more than me! Great to hear about your kid too, good on you both. It takes a lot to overcome that, your focus, and their strength to change is good to hear about! Yeah, put that focus into building the group, but try not to spread yourself too thin. I have no doubt you'll meet other people with the same focus, and resolve!

    Yeah realising that I do suffer from sensory issues is a funny one, because I guess that's what I thought was normal. Now I'm like ' oh so that's why I can hear literally everything in the supermarket when I'm waiting at the checkout' and 'that's why even when I have sunglasses on the sun half blinds me' (apparently one of the market stalls is selling very dark ray bans for £30 so I may have to invest!) and 'that's why certain labels in clothes have felt so scratchy' the list goes on. It is odd/worrying what we accept for normal when it's actually not.

    Hahaha, yeah, it's our "normal", so we take it as that. You'll notice more! It's looking for practical solutions that can actually be quite simple. Sometimes you'll think "Wow, something like that made that big a difference!". Wearing bucket hats, cutting labels out, certain fabrics, the list goes on!

    Hope your week has been ok?

    Pretty uneventful, I saw some friends, got out a bit more than I have been, which was a bit of a milestone, and got a nice new pair of comfortable, sensible shoes! That's always nice!

  • That's ok, no worries. I'm also sorry for not replying earlier. I haven't been on here for a few days as I'm rather preoccupied with and hyper-focused on the group that I'm setting up. Incidentally, I met up with one of the other members last night, she is going to be one of the meet up team leads with myself and two others so it was good to meet her in person. It was good to sit and chat with someone else with Aspergers and talk about Aspergers, I hadn't planned to talk about that specifically but we just ended up having a 3 and a half hour conversation of "do you find that you do this?" and "oh yeah actually I do", symptoms comparison. I think/hope that it was mutually therapeutic. It's odd because it almost felt that there was a kind of 'autistic bubble' around us while we were talking! 

    I think it's a good point that not asking for help and having to cope can be part of a routine that we get into. I know also, being reflective, my own Mother could never cope with anything, but I feel that it was very put on with her not genuine, and after my parents divorced when I was 10, I lived with my dad and whenever he told me off he'd say "don't you dare turn out like your mother!". So while many people have phobias of snakes/spiders/other, I have a phobia of turning out like my mother! The irony of this is, because after realising that I have AS I also realised that my Mother (and various other members of my family) very likely also have AS, that a lot of what I have fought within myself over the years, in order to not be like my mother, is my own Aspergers! I shied away from people and have always been very conscious not to make a nuisance of myself, because that's what she does; I've always tried so hard to repress my temper and maintain self control because she was always going into one when I was a child, much to the horror of everyone else (this was the early 80's) I have turned a lot of that repressed anger at other people inwards though, which is never healthy! I hate that side of me that is inclined to obsession as she is the original crazy stalker woman, I will go to any lengths to repress that side of me, because I remember how disapproving everyone was when she used to get escorted out of church for harassing the vicar, she's the reason I use a fake ID on facebook as sadly I am her obsession for the last 10 years or so! So basically I've spent most of my life trying not to be autistic so that I'm not like her!

    I get how focus can affect it too. I know myself that once I set my mind to something, I will see it through, no matter what. Once I've committed to one line of action I can't change it. Even if there's a thousand reasons why it's the wrong course of action, once I've decided that that's what I'm doing, then that is what I am doing. I'm very fixed. Totally get the tunnel vision thing, I've always been aware that I had this but never used to understand why.

    I also think partly, I think that if I allow someone else to help me then it won't get done in the same way that I want it to be done. I can be a bit of a lone worker in that way, there are often people that would help but I want to do it myself. I guess maybe though people want to help.

    Focus can be a useful tool. Even before I realised why I have that focus, I have been aware of it and have learnt how to harness it to my advantage. I used it to get my eldest over the worst of an eating disorder a few years ago and now with the group, I'm aware that my hyper-focused state may only last a few months but I figure that if I get all the ground work done while I'm in that state then I'll have all the foundations in place for when I'm not as focused. 

    Yeah realising that I do suffer from sensory issues is a funny one, because I guess that's what I thought was normal. Now I'm like ' oh so that's why I can hear literally everything in the supermarket when I'm waiting at the checkout' and 'that's why even when I have sunglasses on the sun half blinds me' (apparently one of the market stalls is selling very dark ray bans for £30 so I may have to invest!) and 'that's why certain labels in clothes have felt so scratchy' the list goes on. It is odd/worrying what we accept for normal when it's actually not. 

    Hope your week has been ok?

  • Sorry for not replying earlier, for some reason I never get alerts when either you or Blue Ray are posting in a thread. It'll probably sort itself out next time there's site maintainance!

    No problem Kitsun, hope you find some pointers in there!

    Do you think it’s an Autistic thing, not wanting to ask for help, wanting to be able to cope with everything without any support from anyone?

    I think in part, it's routine. Sometimes it's focus too. Those are two things I've looked at in relation to myself, and spoke to at length with another autistic person.

    We were both saying that once our mids start something it's hard to change course. I was brought up in a relatively supportive environment, but everyone around me, still to this day, hardly ever asks for help. With a job, with money, with situations, and that was the routine. The crazy thing is people would have helped, but I was used to it all. Just press on. Also once something becomes a routine, you just tend to press on, and on, and on, until the job or situation is over, or we snap.

    I guess the last part of that relates to focus too. Focus can consume the autistic mind, it's a strong attribute in a way, but it can become tunnel vision, all consuming tunnel vision. You start and can't finish. I find it hard to start anything, but when I do, I can't stop. Changing my whole life was hard at first, but it is getting easier, now I'm focused on that.

    It's strange how routine, and focus were kind of the enemy. They stopped me getting help for years, but I'm starting to find out how to direct them, and control my energy, plus stress levels slowly.

    I always say that I don’t really suffer from sensory issues, but when I think about it, I do, it’s just that I’ve gone through life not realising that I suffer from sensory issues, if that makes sense?

    Totally. That's your everyday reality. Your perception, so it feels familiar. Even the things that cause discomfort. Once you start to identify certain factors that may be problems, you can work around them, and recognise when they are getting too much.

    It's a pretty strange thing getting used to it all, but slowly things make sense!

  • Thank you Cloudy Mountains for the recommendation, I shall look for it on amazon Slight smile 

    Do you think it’s an Autistic thing, not wanting to ask for help, wanting to be able to cope with everything without any support from anyone?

    I always say that I don’t really suffer from sensory issues, but when I think about it, I do, it’s just that I’ve gone through life not realising that I suffer from sensory issues, if that makes sense?

  • I've recommended this book lots of times here, but as you mentioned about your coming to terms with your sensory issues, and understanding them this book is a very, very, comforting read.

    Sensory Perceptual Issues in Autism and Asperger Syndrome by Olga Bogdashina.

    I used to see things on TV, where people are in some form of altered mind, and think "Well that's my normal". Pretty scary, like you say it does feel like you're going mad. That book was the start of me understanding things.

    I'd say that's the best place to start, reading what was troubling you.

    It has scientific studies, coupled with some people with autism's stories, and experiences. Which are pretty profund. Like I say it was pretty comforting reading, I hope you find it the same!

  • Thank you for your advice, I think I shall enquire to see if there is any support available. Yes please do recommend some books that you think may be useful, I do like a good book :-)

  • Yeah, they are very helpful, and very understanding.

    I've been starting to wonder the last few days if I should ask my local Autism centre if there is any help available for me.

    Why not? There's nothing to lose, and in my experience quite a bit of knowledge, plus help to gain. I went in knowing pretty much nothing about autism, and I've learned lots in relation to my personal development. Go for it! They will be able to signpost you to services, and give advice on things like workplace adjustments, benefits, mental health, clubs, and the like. Well that's what I've seen at my centre.

    I've got the sort of personality where I just ant to be able to cope with everything all the time, I don't like admitting that I need help but I think it might be helpful to have some sort of counselling or something to help me while I'm going through the post diagnosis adjustment process.

    I think from reading this, working on these things would be something that you could definitely explore. I would force myself on, and on, never asking for help or giving up, until I was forced to get help, or overloaded, or worse. I've learned to ask for help, accept it, and how to pace myself, just say no to things I know I can't cope with at times, plus how to find parts of my autism that actually relax me.

    I was going to say in my last post, well done coping all those years! The sensory side of things is absolutely terrifying at times. I think that it's something that isn't expressed in relation to autism enough, I think at least. I think that it's something that the awareness needs to be raised on. It affects all of us on the spectrum, and it is sometimes the reason for a lot of things people tend to misunderstand. I think that more people might get diagnosed as autistic, rather than having psychotic episodes.

    Well, it may have taken time for you to get your diagnosis, but hopefully you can start on making the right changes! If you like I can recommend a few books on the sensory side of things that are pretty eye opening. 

  • It sounds like they've got a really good team there. I've been starting to wonder the last few days if I should ask my local Autism centre if there is any help available for me. I've got the sort of personality where I just ant to be able to cope with everything all the time, I don't like admitting that I need help but I think it might be helpful to have some sort of counselling or something to help me while I'm going through the post diagnosis adjustment process.

  • Yeah, I'd just had my breakdown, and my diagnosis was concurrent. I still suffer anxiety.

    I think undiagnosed ASD can make you think you're going mad! I've had episodes of my life here I've been convinced that other people can hear my thoughts; where I've been absolutely convinced that people know what I'm thinking without me telling them, those episodes made me worried I was starting to have a psychotic episode.

    Lol, yeah, I see moving patterns on furniture, heat is painful, and LOTS of other things. They put me straight pretty quickly, thankfully! I have a very, very, good eye for observation, so good that it breaks my mind. Sensory Agnosia apparently. Well maybe that isn't good! They explained information overload to me too, which was a problem that made tne Agnosia happen. Now I know I'm not having blackouts!

    I don't attend support groups anymore, I've been paired up with someone who was diagnosed late, but has had 10 years to deal with it. My worker had spoken about me to her, and she wanted to meet me. Our experiences leading up to diagnosis, and our lives before were pretty similar. She's showing me the ropes. I like the way she explains things, it's funny sometimes. "Energy vampires", and "situational black holes", are some of the analogys she's come up with! 

  • It's really good that there's such a supportive resource there for people and that they helped you after your breakdown. I think undiagnosed ASD can make you think you're going mad! I've had episodes of my life here I've been convinced that other people can hear my thoughts; where I've been absolutely convinced that people know what I'm thinking without me telling them, those episodes made me worried I was starting to have a psychotic episode. But, no. As it transpires I just have ASD. Do you still attend AWM support groups?

  • Lol, well I'm fair! Good people there!

    People tend to only give bad reviews. I've also given some glowing ones on TrustPilot, TripAdvisor, and the like, lol.

    All jokes aside though, they really helped me post-diagnosis, and still do.

    I went in there after a breakdown, just having a diagnosis, and my sensory problems led me to think some really bad tgings about my sanity over the years. I thought I was going mad for years, after a few months I was a lot more at ease with the things that had driven me to the edge. They gave me a lot of insight, and help. 

  • That sounds like a very good review Slight smile