Published on 12, July, 2020
So, I managed to get along to the much anticipated monthly Aspergers/HFASD social group in my town this evening. The group itself was not really for me to be honest, largely due the the fact that I was the only female there. I don't of course have any issue with men it's just that men and women relate to each other in different ways and it would have been nice if the group had had a few other women that I could talk with. However, while I was there, one of the support workers who works there popped her head in the room an hour into the meeting and asked if she could have a chat with me in another room. She said that when woman do turn up to the group she had been asking them if they have considered starting up a facebook group for women with Aspergers/ASD in the local area with a view to facilitate social meet ups, as this was a much needed service as many women, like myself didn't feel that the 'official' social group was their cup of tea. She'd had no joy prior to me but I was happily able to say, well actually I have been planning to do exactly that and already have half of the planning for it done on my laptop. I'm so excited that I've decided to bite the bullet and get the group up and running tonight and tomorrow as not only will this create a useful resource for myself but it is clearly a much needed resource for other omen with Aspergers/ASD in my area. It was such a happy coincidence to have met that support worker this evening and it really gave me a lot more motivation and encouragement to just ignore my fears and just go for it with regards setting up the online group. A productive evening!
I've joined an Aspie group too. There's a huge variety of abilities and some have more difficulties than others with the whole social thing. I've never been to a group before where they are all 'like me'. There's a lot of phone-staring and eye-contact avoiding going on - but I suppose all being in the same room is a start..
It’s good isn’t it, not feeling like you have to hide yourself when you’re with your own kind?Yes lots of eye contact avoidance and conversation avoidance at the one I went to as well, though everyone livened up as the evening went on. I’m getting a female group up and running in my area but I’ll probably go to the ‘official’ local one again too. Are you going to keep going to the group you’ve joined?
I'm really pleased that you seem to be settling into the group a bit better. Hopefully it will transpire to be a valuable resource for you.
I seem to get on better with the older members - they seem to be more comfortable with who they are - the younger ones seem to be still trying to figure out who they want to be.
I feel more comfortable with knowlegdeable people are happy to chat about stuff, life, the universe and everything. If they're nerdy and into tech then more the better.
I'm really glad that you had a nice time at the club. It sounds like you made progress interacting with the other people there?
My Brain Injury was sudden too. I always think that an acute event is harder to come to terms with than an expected event, precisely because it is unexpected.
I know what you mean about not remembering names, I am absolutely terrible with names!
I'm back from (Mad Club) - had a nice time playing Uno & Connect 4 and learning about D&D.
My brain continually lets me down in many ways - even down to coordination & fine-motor skills (I build large model boats and I can't do the small details like I used to). My injury happened overnight so there's a huge step change (downwards) in my abilities - not a gradual decline from aging - and it's always frustrating - and will never get better.
One of the biggest annoyances is not being able to recognise people any more - even those I've known for 20 years. I spent the afternoon with a bunch of people and I can't remember their names.
The only thing that I can say, and I know it’s a cliche, is that it does get easier to deal with, with time. You’ll never reconcile with it fully but if won’t bother you as much as it does now. This is a massive difference with those with and without ASD. I know other women who have ABI who are still pretty high functioning with it, who can just pass it off as ‘I’m just not as smart as I used to be’. But I can’t because I have to research the workings of my new brain in depth, I have to understand every single symptom at an advanced level, I have to analyse everything and I will never stop striving to be as close to the old me as possible, because I’m still a perfectionist and I have to constantly try to achieve better. Incidentally I did read some where a while back that having Aspergers can actually help with recovery from brain injury, it’s probably the absolute perfectionism, the inability to accept a sub standard level of self functioning and to constantly strive to do better.
It was early 2013 - I can't get over it because I know all of my previous capabilities and remember all the things I used to know - that I either can't remember or can't do any more (I have the index but the chapters have been ripped out). My brain continually lets me down in new and surprising ways so I keep being reminded of how useless the remaining brain is. They say I only had a 10% chance of survival back then and I still alternate between being glad to be alive and suicidal with the limited function I'm left with. (I have CFS too as a result so I sleep a lot more than normal people). I suppose I'm grieving too for the loss.
I still have capabilities way in excess of normal people but it's a huge drop from my previous life.
What you’re describing really really resonates. How long ago did you have your meningitis? I had my brain injury 12 years ago this month and I will never be fully reconciled with it. I preferred my old brain, it was much better! Don’t get me wrong, I’m long past the horrible raw grief phase, of having to let go of what I was. For a couple of years following my brain injury I felt my brain was like an alien creature planted inside my skull, an alien creature that I had to get to know and accept was me. It’s weird, since being diagnosed with Aspergers it’s actually triggered a bit of a resurgence of the grieving that I experienced in the first couple of years post abi, because now I fully realise what I lost! I can’t get to know my Aspergers in it’s pure form, it’s been contaminated!
Yes - I think they're all unsure of the social rules too.
Re: memory - I read technical documents that I published as a CEng and I don't recognise that person - my language is much more child-like now with a smaller vocabulary and my spelling is atrocious (which bugs me as it used to be perfect). I'm impressed with who I used to be and disgusted with what I am now.
Sorry to hear about the meningitis, that sounds scary! Mine was due to an RTA. I can totally relate to being taken down to what is considered ‘normal’, I feel the same. It’s annoying though, I’ve found, losing the ‘good’ traits of superior IQ, memory and organisational skills!
Regarding the group. Maybe they don’t really know what the rules are either? Everyone is probably feeling a bit unsure and socially anxious. Try to take comfort from the fact that you’re all in the same boat, even if it’s not obvious
I had a brain injury too - Meningitis - so it's damaged my memory. Luckily, I used to have an eidetic memory like Sheldon Cooper so the damage has taken me down to what NTs would consider 'normal'.
It's tricky trying to work out what people are into - they don't give much away. They have some games there but I've not seen them before so I'm sitting on the outside working out the rules.
Ah brilliant! Good to hear you’re going again, hope you enjoy it. I guess that Aspergers and Autism Spectrum Disorder in Genet covers an extremely wide range of abilities. I used to be ultra nerdy and ridiculously high functioning before I havd a brain injury to contend with too, these days I’m not quite as nerdy and not quite as high functioning but still on the spectrum. It can be difficult to commicate at an Aspergers Group, I found to begin with, people didn’t answer when I said hello, at the one I went to, they had games out such as uno etc, if this is the case at yours maybe ask if someone wants to play a card game with you, to break the ice, or take a pack of cards if they don’t have any there?
I'm going again this afternoon. The thing that surprised me most was I thought Asperger's people were just like me - ultra-nerdy and high-functioning and mostly passing as 'normal' - but this group has a wide range of abilities so it's thrown me slightly - I'm having to work hard to communicate with everyone and I'm not sure where I stand with them. I suppose it must be how NTs feel when they get to know people like me.