Support Groups for High Functioning Autism/Asperger Adults who are

This is so relatable! It's frustrating when you're "high-functioning" and feel like you don't quite fit into existing support systems. Finding a supportive community sounds amazing! I hope they find a good way to connect.

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My eldest son mentioned Discord - is that a good way to do something like this? I know nothing about Discord - but he seemed to think it was ok. 

No one is saying that. 

Thank you to everyone for your replies.  I think I am going to look into perhaps organising some mutually supportive groups where people can connect and share their experiences and find some support.  I think there is a definite lack for people who are Asperger/High Functioning who do not require specialist support.  A sense of community and a place to share our experiences might be just the thing we need to help us along.

Chris

Yes. It’s not ideal but I’m sometimes at a loss to think of a good alternative. Whichever way you word it it sounds unpleasantly judgemental in some ways - which I really hate. 

I think we're well aware of that here. Functioning is ... unfortunate terminology. I'm no expert but I believe it was adopted in the early days of autism research when researchers wanted to study the difference between autistic children based on their IQ. Telling a parent that their child is in the 'low IQ' group is probably a good way to get that parent to pull their child out of the research. Hence high and low functioning as terms. It's still useful to make a distinction between autistic people based on intelligence, the ICD-11 does for example.

P.S. 'Autism spectrum disorder without disorder of intellectual development' is even more of a mouthful than high functioning autism. So unless you're suggesting we adopt "high IQ autism" I'm not sure there is anything better.

My son doesn’t open up to me about what his ocd thoughts are as he finds them very distressing to talk about - so I don’t know. I don’t even know the subject area of them. I can see what your getting at though - but without knowing I can’t apply what you’re saying to his situation. I can see the distinction you’re making and it’s an interesting perspective. 
The CBT he is having for is OCD hasn’t helped at all - so far he’s had 7 sessions. 

Just out of curiosity - what are his thoughts about. They can give a clue into what he could potentially excel at. I personally feel OCD is a mis-diagnostic of a hyper-active brain (OR maybe this is normal and NT brains are under-active, or maybe it's neither and it's JUST the analytical reasoning desperate to be put to proper use).

It's important to separate issues of Health & Wellbeing / Safety (every time I approach the stairs I think of falling down, thus a defensive being human technique of ensuring I focus on the task of going down them) from a - let's call it The Psychological Thriller in the mind - either induced from a thing one cannot unsee or from application of an analogy to alert matters of safety in Society (these nightmare items also being of Spiritual / Emotional consequence - matters of the 'Soul') from a potential to Specialise. 

I had latched on to Melodies as a child and would have 3 unrelated songs or jingles playing in my head at once. I now work in sound and managed to eventually stream this into just One Song (it does change up) at a time in my head, but the music Never Ceases. Is that OCD? No. It's a brain wired for Melodies and Rhythms and I can put it to use. 

OCD from a medical standpoint is about control. The basis of OCD is about things we cannot control which we want to dominate. It is related to NeuroTypcial competition wired into the social codes. 

Yes - I offered to go and volunteer there  too - if it would help (I also offered NOT to go too - if that would help!). 
He has a thing about associating ‘good’ things with ‘bad’ things - so he’s worried about trying something that he might not like with our local country parks that he enjoys walking in. It’s so complicated for him. He has OCD and problems with trying to control his thoughts and compartmentalise things in his mind. It breaks my heart that his life is so hard - he’s mentally tied up in knots with all his different worries. 
Your online drawing class sounds great. I don’t seem to be able to find these sorts of things online - is there a central place for finding things like this?
I take your point about me ‘taking a leap’ and that it might help my son to see me doing this. It’s a very good point - I’m sure you’re right. Thank you for making that point. I’m very afraid myself and I know it’s not helping my son. I carry a lot of guilt because of this. 
Thank you for your suggestions - I hugely appreciate it

I’m sorry you’ve had that experience of feeling excluded - that horrible. Why are people so unkind? 

I agree with the points you’ve made - most of the support is aimed at people with more obvious challenges from autism and people with learning difficulties. There is a lack of understanding that more ‘high functioning’ (I know that term is not ideal but for want of a better one i will use it) also need support at times. They need a place to go, a source of support. For example my eldest is incredibly intelligent and went to Oxford Uni - on the surface of it people assume he’s doing great and super capable. But he’s actually had some really severe difficulties in many ways relating to his autistic traits - and even though he’s had responsible and decently paid jobs he’s found the transition into the workplace hugely stressful and difficult. He can do the WORK - no problem - it’s all the other aspects that are difficult for him - the social side, the struggle with maintaining focus and concentration on the aspects of the job that don’t interest him, etc. He was near to a nervous breakdown at one point due to trying so hard to fit in to a workplace that was really toxic. He couldn’t relate to any of the people he was working with at all, but made a huge effort to fit in with them and it was exhausting him trying to do that. But all my wider family assume he’s doing brilliantly just because he went to Oxford Uni. They have no idea how being autistic impacts on a person. People don’t understand that it’s very complex - many autistic people can appear fine on the outside but they can be on the verge of collapse mentally and emotionally. 

Could you go with him to the local park to do volunteering in the first instance? It sounds like you are trying to find solutions it's just that you need a helping hand. It's really hard when you get stuck in the "zone" to get out of it then it feeds on itself and further perpetuates it.

I joined an online life drawing class in lockdown, it was really good. Everyone was engrossed in the drawing and we were on mute, then between the poses we would have a brief chat and you could share as much or little as you wanted. I'm not suggesting this for your son of course, but I'm trying to show you can take part with things being alongside others but without having to "join in".

We can lose skills if we don't use them enough and of course it's daunting having to reintegrate yourself with other people, especially if you aren't feeling confident after going through ill health and crisis. Sometimes a leap needs to be made for yourself to break the cycle. I'm being as kind as possible here BTW.  Maybe if your son sees you can do it, it'd give him a bit of a nudge.

Have you rang the NAS helpline for any advice about your son?

I've sent you a PM

I’m not sure if there are groups like that in my local area. I will have a further look. I feel quite anxious about groups in general (especially since the pandemic) - I find online things like this easier. I realise that myself and my son do need to meet actual people (!) in person eventually - we need to build our confidence after the the impact of the pandemic (which made us even more isolated than before). My son is very anxious about trying anything new - especially if it involves meeting people. I recently suggested some volunteering work in local country parks near us (it looks like a good scheme - all outdoors and as much or little involvement as you choose) but he found the idea too intimidating. It’s a vicious circle - we get burn out, we withdraw from life, and then our confidence is further reduced. I think on the surface of it to anyone looking from the outside my family look like we’re coping (we have a home, a car, my husband has a job and we are managing (just!) financially, but we are actually in crisis in terms of our mental and emotional health. We work so hard trying to find ways to feel and do better but we’re just exhausted. I’m sorry - I don’t mean to be so negative. I’m trying to find positive solutions - my son and I just want to be happy and enjoy life again. We seem to have lost our way. I’ll have another look at what’s available locally - just in case I missed something. Thank you for your reply - it means so much that people understand and want to help. We feel so alone sometimes. My son is such a wonderful person, he’s young and he deserves to be enjoying his life. I want to help him but I don’t know how to in many ways - partly because we are so similar, we have similar difficulties. 

For example I personally have tried in the past to organise an anime club and a science club for people in general, not just autism, and couldn't drum up enough interest in these activities. I'd happily run an anime club or science club for autistic adults, but if it was an interest based group why keep the non autistic people out? And if its not centred around one of my interests I'm not sure I'd find it that exciting I'd want to pour time and energy into it.

Autism groups are often run by parents who's focus is their kid with special needs. It's feels more like a necessity to them. The problems faced in their lives motivate them to help others with similar problems. The problems I've faced are neurotypicals excluding me from groups that used to be very autism friendly and have more than their fair share of autistic members which have since become unsafe spaces for autistic people where they can be pilloried for giving minor unintentional offence. That's what I'm passionate about. It's why I'm working on the areyoualien.uk project. But the kind of support we offer is specifically about standing up for yourself when you experience discrimination. We're not a social group or anything like that.

In my area I’ve found a service that claims to be for autistic adults of all levels of functioning but is almost exclusively used by low functioning autistic people and understandably has catered to this majority. When you look at the intersection of high functioning and adult there is almost no support in the community.

I think part of it is the assumption is made that high functioning autistic people could organise their own stuff if they wanted to. But high functioning autistic people tend to have really restricted interests and wouldn’t be too interested in putting effort into organising something that didn’t centre on one of those interests.

Yes I think MH services are very stretched at the moment - that is my experience. Althought I think they always have been stretched it's just the pandemic has exacerbated this. Have you had a look at non-autistic support groups in your area? Can your MH team direct you to some? (Mine recommended lots of community groups etc that I could have a go at accessing). I did a mindfulness course last year with my local adult education centre - it was free for people with mental health needs (basically anyone then). In my area things are not well publicised so until you go asking you don't know what's on offer.

I totally agree. To be honest we are barely ‘muddling through’ at the moment. It’s been really helpful for me to come on here - and it’s made me realise that the people who I can really relate to and talk to are other autistic people. I know it sounds stupid but I hadn’t really grasped this before - I thought I was just rubbish at making friends and I found socialising so stressful that I just withdrew from it. My youngest son got an autism diagnosis about 10 years ago when he was at secondary school - and that’s when I realised that I was autistic too - and things started to make sense.  My husband has lots of autistic traits, and my eldest son is autistic (although he managed to do brilliantly academically so is currently doing quite well in the conventional sense - despite having lots of challenges due to his autism). 
Our situation at the moment is that we have had a very difficult year and both my youngest son and I are just about managing to get through each day - but struggling so much. We are totally burnt out. There is so little help for us. My son gets an hour of CBT on the phone a week - that’s it. I’m on a ridiculously long waiting list for therapy for PTSD. None of this is helping. The best help I’ve had is from coming on here and talking to people who understand what it’s like. It’s been such a relief to realise that we’re not alone in that respect. 

I would be interested in this too - I'm in my mid 30's in the North West. I am "muddling through" life. It's peer support I'd like more than anything. Just to be able to talk with people who are in the same boat. Maybe we should set up our own peer support group.

Autism Nottingham have a few virtual event a months for autistic individuals without intellectual disabilities. 

they often have Gather Town event every month from 7pm till 9pm and a google meets event from 7pm till 9pm. To find out more look at the Facebook page. Even though it set up by autism Nottingham it open to everyone across the uk. 

if you contact you local authority you may find out or help steer a social engagement project. I live in Norfolk and we have Norfolk autism partnership. You may want to look if their something similar in your area.

Mens sheds are great places, most of them have autistic members and the majority of the older folk are tolerant and kind.