AS Groups

[darkshine]

Thinking of going to a group... everything inside me tells me to just forget the idea... but I have agreed to try one out that my care-coordinator suggested and don't feel like I can back out now I said I'll go...

 

Anyone got any suggestions... or thoughts on this?

 

Survival tips?

[Tally]

Suggestion 1: go

 

If it's really awful then all you've wasted is a few hours and you never have to go back again.

 

If it's run by people who have any clue about AS, they'll try and help facilitate conversations, introduce you to a couple of people, and all round help you to settle in. They would expect mewcomers to be nervous.

 

I hope you will have the confidence to give it a go. Is there anyone who can come with you first time to make sure you find your way, are OK, etc?

[A-S warrior]

Suggestion 1: go

 

i second that.

[Special_talent123]

sorry no i havent- i dont have a local NAS over here but we have a different one called wessex and im not pleased with them, do you know why because they turned me away from there group guess why because im not high functioning or aspergers

[LancsLad]

I have some very strong views about this topic and want to say from the outset these are personal views based on my own experience. I suspect there are individuals out there who will not agree with me on this one and thats fine you are entiltled to your own views based on your own experience and I respect that.

 

Darkshine I agree that for many this might be a very difficult decision to make. At one level we might simply feel it is about agrophobia, anxiety and communication skills but I think there are deeper issues than that and these should lead us to asking the are support groups a good thing or not?

 

I think the reaction of the vast majority of people will be, of course support groups are a good thing, why would you question that. I have one concern that when a completely overwhelming percentage of the population come to quick conclusions with little thought then there might be a problem somewhere. I think the tone of your post might also reflect a little on some of my expereiences that people who never question the validity of a statement transpose their beliefs onto us, and one such example is 'go to a support group it will do you some good'. My experience of such scenarios if you come back with 'why' they either start to struggle with an answer, which shows they have not thought out the situation at all, or they come at it from a position which is all about themselves and what 'they' would get from the experience.

 

If we take what I consider a very sensible line, one which you are taking Darkshine to question this idea on our own terms we are potentially running a very big risk. That risk is conform to our thinking or present yourself as someone who turns down offers of help and support. I have yet to feel comfortable in any professional situation around my health where I have felt comfortable in turning down support, knowing the person opposite me will listen to my reasoning, respect my position and take on board what I feel and accept it as a valid alternative position.

 

At this point I want to say I have had good experiences and bad experiences of support groups so I am not against the idea rather I am putting together a case which simply questions them.

 

In my view the worst case scenario is the one where it is decided that a good allocation of resources is to put it into a support group. The first point is this imediatly does not become about individulas but about the collective. For some people dealing with issues in a group setting might be appropriate but for many it is not. This would be fine if we had the choice be treated as an individual or be treated in a group you decide you will get equal levels of contact in both. In my opinion when that choice is not there then it seems more and more like a political decision in respect to getting the most people in front of a limited amount of resources. The problem is there is often in these situations a feeling that there should be some return for the resources spent on things such as rooming, energy, tea and biscuits.

 

We then get to my next point and that is if money is being spent and it 'would be nice if there is a return' then we start to try and justify having the support group in the first place. The point here is lots of expectations come into play. One of the first expectations is that there needs to be some sort of control and organisation in place and who better to oversee the thing than another professional. At the worst level a lot of this sometimes might be about jobs for the boys (and girls). What we now have is another level of expectations in place those of the co-ordinator. The amount of time I have been to support group scenarios know we have a room available for one hour to spend the first 10 minutes sat quietly whilst the co-ordinator pulls faces at us and sighs whilst working down a physical or mental list of who has not turned up. I sit there thinking is this thing going to happen or not, shall I sart it all off or are we waiting for someone who is far more important than the people here who have all made an effort?

 

My next point is that often this co-ordinator in their other professional roles sees themselves as a 'fixer'. The problem is that no matter how much they try they simply can not help themselves and will have a natural tendancy to try and fix people, even if this a life long condition without a fix (so far anyway A-S Warrior). This attitude is prevelant throughout society. We are unable to for example to have youth clubs for kids which are simply seen as a youth club, rather they are a device which gets kids 'off the streets' and go some way to helping fix societies issues. As soon as this premise comes in what we are saying is that kids who are out in groups on the urban fringes are somehow doing something wrong they should be in the youth club we provided. To take this one stage further in highlighting how stupid a premise this is, would an anthropologist observing some savanna tribesmen standing in a small group on the edge of their village view them as ploting the downfall of their tribal leader, or may they just be watching the sunset in a beautifull landscape setting? The point I am making is there are some very pervasive attitudes in our own society which makes it very difficult for 'anything' to ever be seen at a simple level such as two people having a chat over a cup of tea and enjoying each others company. Personally when I do have a simple chat in a support group setting why do I feel like I am being observed and that there are underlying elements at play, the reason is because I am and there are.

 

The next concern I have is with 'fixers' going one step further which inevitably starts to happen. I would even go so far as this has become the norm and 'clients' are used to this position they almost demand it. I am sure if I set up a neutral support group with no expectations and invited a cross section of mental health clients they would almost invariably set a room out in a circle go looking for a flip chart and after half an hour start demanding when are they going to start to be fixed. When I have been in such scenarios my imediate concern is between the relative experiences and power positions of the relative parties. I am always concerned to look at this from a fresh position of what is the reality in this room. I am also aware that a lot of behavioural conditioning has taken place before that time and is at play and this can distort the position considerably.

 

Regarding my next point I am not having a go at Tally far from it, I think she raise a good point in many ways. A lot of the professionals who might be associated with an Asperger's group will by the nature of their work have a viewpoint formulated around working with often children and adults. It is important that we understand that AS is a developmental condition which causes delays and we are not stuck at a point in time in our teenage years. I for one would not like to attend a support group on the recomendation 'it will be good for you', to find I am sitting down and being told about all the social issues I supposedly have why they are there and generally feeling like a school kid and being highly patronised. When I am this raises some serious questions in my mind, firstly are the other individuals in the room this weak in social situations for example. I know the person next to me was highly articulate and freindly when we were chatting whilst the person in front sighed and tuted about who was not there earlier. I look at him now and he is nodding like a puppy dog in a trance and agreeing with everything that is being said up front which would imply he has the social skills of a 10 year old. We now have a task I have to talk to the person next to me for 10 minutes and find out something about him, this is emabarising because I know about a dozen things already because we were speaking earlier its what people tend to do. Yes he can pull out of the trance and communicate normally. We now have to give out feeback on each other its his turn, and he is really struggling with the expectations and everyone hanging on his every word, I really feel for him because I don't think he is like this at all, but the pressure is really false. I think to myself are these people very different to myself or are they very conditioned to think and respond in a certain way in an environment such as this which is simply reinforcing that conditioning. If they are very different should I get up polietly excuse myself and say this thing is not for me I don't think I have AS and walk away. Am I making this story up or am I describing my experiences of my first AS support group?

 

If support groups are like this are they a good thing. In some ways the perceprions are of a 'Ronseal' nature they tend to 'do what it says on the tin'. My point is people expect them to be a bit like this or are they 'supporting' people about 'real life', are they trying to provide friends for people who are not deserving of friends, are they trying to educate, are they a cost effective option for the HNS in providing an hours contact,are they creating jobs or filling the roster of a run down hall which is facing budget cuts, what is really happening here?

 

The answer to all these questions Darkshine is I do not know and the only way you will find out is by turning up and having a look. What I will say is that to do so there will be a cost and that cost might be about agrophobia, anxiety and having to communicate with stragers and intergrating into an already conditioned group dynamic. Your care co-ordinator should be aware of the costs around this and if you come back and say you sold me something false, you have every right to say I paid the price for that, there was a cost, be more thoughtful in future.

 

If I had to surmise my experiences of support groups be they for AS, anxiety management, art therapy, foster care etc... I feel I always come to the same conclusions. Firslty after an awkward introduction I tend to get on very well with the person or people fronting the project and we seem to reach a level of understanding based on a mature approach, I find it easier to deal with individuals than groups and so I extract, create, cause an individual relationship to develop. In these early stages i always feel fraudulent and think I should not be there. After a couple of weeks it becomes obvious that I do have 'needs' in that I am very autistic in many areas, I am prone to severe panick attacks, I do have very deep and dark emotional energies which are very well suited to art projects, that the kids in my care are very challenging etc... At this point I feel comfortable at being in the room. What I can never get comfortable with is how the rest of the group invariably opperates on a 'needy' basis. In my experience if I hang around the group for long enough individuals see that my relationship with the group is based on 'needs and simply sharing them' and some of them start to move to this position from their 'conditioned' 'needy' starting point. I think they must see it as a more mature approach and as such I have more mature relationships with the people who hold the power over them. It is only at this point do I feel I am in a support group at all and can start to make a contribution. There might be support group out there which do not have a feeling of 'needy' all over them or which are manipulative constructs of a weak mental health service. If anyone knows of one in the North West please let me know I will be along next week, but realise there is a cost for me in this so be thoughtful first, I will be very thankful if it is good, but will tell you its a load of ###### if it is.

 

Darkshine I have thought long and hard about setting up an adult support group but on refelction at this moment in my life I am not too sure how much energy I have to exert in trying to support individuals with issues such as AS from moving from a position of being 'needy' to simply having and sharing 'needs'. I know I could book a room and advertise it and if I was caught up in traffic and arrived late either the group themselves or the person who opened the hall or room would have arraged a semi circle of chairs with a flip chart central at the front. I suspect if faced with this I would simply curl up in a ball in the corner and cry a cry of frustration and shout 'you have got it wrong, so, so wrong !'

 

As I said at the start I have strong views on this and i respect and welcome the views of others even if they are very different from mine. The forum should be about debate and that requires us to think for ourselves and draw our own conclusions (felt a Monty Python's Life of Brian moment coming on there).

 

Just a few personal thoughts.

[Tally]

Well Darkshine hasn't actually specified it's a SUPPORT group and many groups for people with AS are more social meet ups than anything else.

 

I first met others with AS shortly after I first became sure I had AS, though before diagnosis. I read about Autscape, a 4-day residential conference/retreat for autistic people, and booked a place on the spur of the moment. I can't believe I did this as I normally like to think things through at length and find excuses not to go. By the time it came around I was more scared of wasting my money than of going, so I turned up and had the most amazingly wonderful experience. I was so shy I barely spoke to anyone else, but it didn't matter because no one judged me for that and people were happy to sit in silence and play board games in the bar with me. I felt involved!

 

Seeing people once per year is not a good way to make close friends, but meeting with a small number of familiar people year on year has led to the formation of a small number of people I would call friends. One in particular has been extremely supportive of me and there are a few others who I know care about me (and who I care about also). There was no support provided and no facilitation of conversation of friendships, but simply meeting with similar people has enabled me to form the beginnings of true friendships on my own.

 

The other time I met others with AS was when I went to a pub social group run by the NAS. Now I've moved I can't get there any more, but for a few months it was very enjoyable. There were 2 volunteers who helped to facilitate conversation for the first 2 hours, and when they left I decided to stay and finish my drink and then go home. I ended up staying 4 hours in total the first time I went. Had I been able to continue attending, I feel that I would have been able to form friendships and meet socially with people outside of the group as well, which would have been great.

 

I enjoy 'meeting' others on this forum, but I'd like friends I can chat to and go to the cinema with or for a meal, and you need face to face social meetings for that. I could try 'mainstream' social groups like a class or interest group, but being so shy makes it difficult and I stand out as obviously different in a group like that. It doesn't mean I can't make friends that way (I hope I will when I start uni), but I've found AS groups to ease you in a little more gently so I can focus more on conversation and finding common ground than on appearing normal so as not to scare people off. This is why I'd recommend a person with AS seek out others with AS as a good way to meet others and start to form friendships.

 

Another experience I had with a group, although not AS-related was when my doctor sent me to a "lifestyle management programme" for people with CFS. It was not like group therapy, it really was about education and management of the illness. This was the first time I met other people with CFS and I got almost as much benefit from that as I did from learning how to manage my illness better.

[Special_talent123]

i cant but agree with tally. i a also talking about social meet up too not support group. there is a difference i go to a lgbt support grouop tht u have to do what is on the agenda that time and it can get boring but i feel like i cant fit in with it a number of time- well i have very few friends but they only seem to want to be my facebook friends then the other couple bully and swear at me, where the social groups ive been to are youth clubs for adults do anything u want to do,

[darkshine]

Darkshine I agree that for many this might be a very difficult decision to make. At one level we might simply feel it is about agrophobia, anxiety and communication skills but I think there are deeper issues than that and these should lead us to asking the are support groups a good thing or not?

 

Right now anxiety, communication skills and agoraphobia are pretty strong issues along with fear, worry, panic, and also strong adverse reactions.

 

In that sense this is a very real difficulty – it can sound so simple when I write it down like “hey, shall I go to a group?”

 

But it isn’t that simple at all – it’s a military operation from a fortnight beforehand all the way up to and throughout the meeting and then depending on what happens – if something happens that is negative I could then have that stuck on my mind for another week or so – more if I then decide to try the other group...

 

There’s so many things I need to know and so many of those things are things I can’ty possibly know until I go to one of the groups.

 

You say near the end of your post that there is a cost – all of what I just said and more would be the cost to me – an absolute overwhelming state of stress and tension followed by a mind numbing tiredness from the mental, physical and emotional effort.

 

Putting that aside for the time being – you say we should ask whether support groups are a good thing or not – that isn’t an easy question and all the points you make about it can be factors in why they may not have the people they are supposed to helping’s best interests at heart... but that would be a bleak view.

 

I personally think that it depends just as much on what kind of person you are – I’ve known people who attend various kinds of groups, whether for an interest or for social reasons or for support and they seem to get what they want out of it.

 

But that has been one of the reasons I have so strenuously avoided groups of any kind (apart from the one’s stated in my previous post). I don’t get joy out of social interaction unless I find someone who interests me – this doesn’t happen that often... I have almost zero sense of achievement so there’s no point doing a group for interests – plus I’m pretty insular – I like to keep my interests to myself.

 

This leaves support – whatever the intentions of the people running these things – or the people above them – I never really saw the point in support groups – they require social interaction to a deeper degree than merely socialising and because of how I am I would more than likely end up being a suport-ee rather than someone who was being support-ed.

 

That’s the good thing about this forum – I can switch off any time I like – I find that difficult when there’s a real person stalking me and stealing all my energy.

 

I think the reaction of the vast majority of people will be, of course support groups are a good thing, why would you question that. I have one concern that when a completely overwhelming percentage of the population come to quick conclusions with little thought then there might be a problem somewhere. I think the tone of your post might also reflect a little on some of my expereiences that people who never question the validity of a statement transpose their beliefs onto us, and one such example is 'go to a support group it will do you some good'. My experience of such scenarios if you come back with 'why' they either start to struggle with an answer, which shows they have not thought out the situation at all, or they come at it from a position which is all about themselves and what 'they' would get from the experience.

 

If we take what I consider a very sensible line, one which you are taking Darkshine to question this idea on our own terms we are potentially running a very big risk. That risk is conform to our thinking or present yourself as someone who turns down offers of help and support. I have yet to feel comfortable in any professional situation around my health where I have felt comfortable in turning down support, knowing the person opposite me will listen to my reasoning, respect my position and take on board what I feel and accept it as a valid alternative position.

 

At this point I want to say I have had good experiences and bad experiences of support groups so I am not against the idea rather I am putting together a case which simply questions them.

 

People do that because they relate the topic to areas in their own life – even when it doesn’t apply to me I find it useful to hear that there are numbers of people who have found various things useful.

I have been accused of turning down help over the years by my refusal to attend mental health groups prior to my AS dx (such as anxiety management, coping with stress, depression, agoraphobia (dunno if anyone ever attended that one lol), how to change thinking and various others in this vein of thinking...). I explained my feelings on this earlier in this post.

 

But this is exactly why I am exploring the idea.

 

If support groups are like this are they a good thing. In some ways the perceprions are of a 'Ronseal' nature they tend to 'do what it says on the tin'. My point is people expect them to be a bit like this or are they 'supporting' people about 'real life', are they trying to provide friends for people who are not deserving of friends, are they trying to educate, are they a cost effective option for the HNS in providing an hours contact,are they creating jobs or filling the roster of a run down hall which is facing budget cuts, what is really happening here?

 

The answer to all these questions Darkshine is I do not know and the only way you will find out is by turning up and having a look. What I will say is that to do so there will be a cost and that cost might be about agrophobia, anxiety and having to communicate with stragers and intergrating into an already conditioned group dynamic. Your care co-ordinator should be aware of the costs around this and if you come back and say you sold me something false, you have every right to say I paid the price for that, there was a cost, be more thoughtful in future.

 

Although I haven’t quoted all your main points – they are exactly the kind of reasons I have so far successfully avoided going to any kind of group so far.

As far as I’m aware some are created because some new rule passes and things need to created to show they are helping people – I do not know how that is measured.

As a matter of interest – my care coordinator seems completely unaware of any potential costs to me - it is like they aren’t relevant and that going to one of these groups is as simple as it was for me to just type the words.

 

If I had to surmise my experiences of support groups be they for AS, anxiety management, art therapy, foster care etc... I feel I always come to the same conclusions.

 

Your experiences remind me very much of how I felt when I was doing the voluntary groups – I felt a fraud for being there and similar things to what you said developed – it was pretty strange and towards the time I quit them I had totally lost heart with the whole endeavour.

 

Darkshine I have thought long and hard about setting up an adult support group but on refelction at this moment in my life I am not too sure how much energy I have to exert in trying to support individuals with issues such as AS from moving from a position of being 'needy' to simply having and sharing 'needs'. I know I could book a room and advertise it and if I was caught up in traffic and arrived late either the group themselves or the person who opened the hall or room would have arraged a semi circle of chairs with a flip chart central at the front. I suspect if faced with this I would simply curl up in a ball in the corner and cry a cry of frustration and shout 'you have got it wrong, so, so wrong !'

 

I wouldn’t bother right now if I were you

[darkshine]

Thank you for everyone for your replies...

 

Initial reaction ---> seriously wasn't expecting any complex

Suggestion 1: go

 

If it's really awful then all you've wasted is a few hours and you never have to go back again.

 

If it's run by people who have any clue about AS, they'll try and help facilitate conversations, introduce you to a couple of people, and all round help you to settle in. They would expect mewcomers to be nervous.

 

I hope you will have the confidence to give it a go. Is there anyone who can come with you first time to make sure you find your way, are OK, etc?

 

Yes I suppose going is the best way to find out

 

There’s my housemate says he will come with me and is then willing to wander around for a bit while I go to one of the groups (and we’d have mobile phones in case I leave early). He thinks travelling to see where the building is beforehand would be a good idea too and I think that would be a good thing – it helps to know where I’m going and stuff like that just so I know you know?

 

Just wanted to say thank you for sharing your experiences in the other post you made – you’ve been to quite a range of things over time and it shows there are certain positives to come out of going to a group.

 

I guess I didn’t put enough information in my first post (I forgot a few key words and stuff)

 

There are 2 groups I am looking at - one is pretty small (less than 10 people) and I haven't got a clue what its for, could be meet up, could be support... honestly cannot remember... (lost the leaflet and it isn’t listed online anywhere). The other group is larger and is described as a social support group.

 

Neither is close to home so a fair amount of travel will be required (like half an hour worth of walking and a hour train journey) which of course is a problem whichever way I look at it. That is a problem in itself and there are other problems and issues that I will leave alone for now.

 

I don't like the idea of groups at all - everything inside me recoils from the idea, but if anyone's read some of my replies in another recent post they will see that I am starting small (ish) in order to try to achieve more things in a logical way of slowly ramping up the complexity of the experiences.

 

This whole idea is a weird thing that I sometimes do - by trying to increase skills, coping and all that stuff...

 

I've never ever been to a group involved with people with ASD's or (and this is different but similar) any group for any type of mental health problem either - I have done voluntary stuff for improvement of MH services and for disability awareness but that doesn't feel like the same thing to me because the main focus of those was not placed at me for much of the time.

 

I have some questions....

 

What kind of thing happens?

What do people talk about?

What are other people's experiences?

What if I don't like anyone there? Should I just stick it out and then not go back or should I leave immediately?

How long should I stay if I want to leave the second I arrive? Is there a smallest amount of time for politeness or anything like that?

Will it matter if I can't speak?

Edited September 12, 2012 by Suze

[Lyndalou]

Hi Darkshine

 

Lancslad has brought up a number of pertinent issues in his post. As someone who is organising, advertising and facilitating a support group I would say that I agree very much with a lot of what Lancslad and you are saying about the dynamics that you are likely to find in any group.

 

I went into doing this very much with my eyes open having worked within mental health for some years and having a history of chronic mental health issues myself.

 

From the start I had to be very clear about the objectives of the group - it is to provide a positive, friendly and informal environment to discuss common issues that those attending the group have due to having diagnosed or suspected AS as well as not so common issues people want to get other people's feedback on or share. It is a Peer Support group and is meant to be a place where people are respected and their views are listened to. It is meant to be a place where practical strategies to help people deal with their various difficulties are put forward. It is a place to tell each other about upcoming events and resources such as conferences or information people may have come across during the month. It is a place hopefully that people can make friends.

 

There have been people who have thought that it would be ok to phone me in the evening during the month to share their thoughts. I have had to be clear that this is something I am not prepared to do. I have been asked if I can provide lifts to meetings. I have had to be clear that people must find their own way to meetings (although I have looked into bus times and routes and shared these). I have had people share around that it is a social group so I have had to reiterate a number of times that it would be great if people make friends and wish to make arrangements to meet up during the month but that that is separate to the Support Group. Sometimes, I think that the people coming along must think I'm a total control freak but although I am a 'peer', I am also 'facilitator' and this is a strange position to find myself in!!

 

Partly, I have had to be so clear about what I am prepared to do and what the objectives of the group are because having spread myself thin and been taken advantage of in my previous work life, I have realised that although people may test where the boundaries lie especially if they don't like the response they get, I have learned by experience the importance of saying 'No' especially when time is limited and I have other commitments (I get stressed enough as it is and have to work hard to organise myself). It also means that I am not always worrying about shifting parameters and expectations. It also means that I can concentrate on doing all the 'hidden' stuff people don't see is involved like returning phonecalls and e-mails from adults interested in attending as well as professionals, printing up and distributing advertising and looking into funding and possible meeting venues. It can be a real balancing act when people expect me to do more than I am capable of doing in a month or don't necessarily understand the time involved to do things if they have never done it themselves - that's fair enough.

 

I would say the group is the 'Ronseal' version of a support group that Lancslad mentions. What is on the poster is what the group is about. I think some people do find it difficult to look a me as organiser and facilitator and see me differently to a professional running the group. This is a tricky conundrum as often there can be a view that there can be answers provided to problems when the ethos of the group is that people can take what they want from each meeting they attend. My wish has always been that people will learn from each other, believe in themselves more (a couple of the guys are wonderfully positive and happy in themselves anyway) and start to recognise their own abilities as well as their difficulties. Weirdly, doing this and being in this strange position has forced me to look at and find ways to navigate my own difficulties with sequencing, organising and timekeeping (oh, and technology - that's a tough one) and I've had to accept that my hope to be supportED myself as you say has transmuted into supportING, certainly for now anyway!

 

I would like to think that everyone feels the freedom to be able to say (or not say) what they want to within the group. There are those who interrupt or speak across others and part of my facilitating role is to say 'Can I stop you there? _______ wanted to say something. What would you like to say?' without the person whom I am interrupting being made to feel bad. There are people who I am sure are finding it difficult to follow the conversation so I might say 'Is everyone hearing/following the conversation ok?'

 

The support group, if you attend it, is for your benefit. If you are able to get there the least I would hope for would be that people would acknowledge you, make you feel welcome and try to respect your boundaries. If you feel that it is not worth all the effort to try to get there in the first place you don't have to put yourself through that again.

 

Take care

 

Lynda

[LancsLad]

Darkshine I think you raise an interesting proposition here, should we do things which might not have a massive benefit to us as a stepping stone to other things, I think the answer is yes if we can.

 

Reading through your last post there are a lot of control elements at play there, I play this sort of thing out in my mind all the time as I am sure many others do. I know in reality that I will never be able to sanitise every situation to a level that it is completely predictable but I can control a lot of elements from a personal perspective. The hard thing is getting the balance right for me, but there needs to be a purpose and there needs to be room for growth in the process.

 

To use a personal example from last week. I had an appointment on Thursday and I had not been to the location before though I was aware of the general layout of the area. There was a point in my life where I would have rehersed the journey. I decided that 35 minutes should give me plenty of time but hanging on to leave that late was difficult. In reality I was sitting down in the waiting room 18 minutes before the appointment time. My reaction was I misjudged the journey time played safe and had a lot of anxiety to deal with in the waiting room which was very busy due to a blood clinic running in the same building which I hadn't factored in. But the reality was I got through the experience, there was personal growth in there because it is the second appointment in a few weeks where I have not rehersed the journey and my anxiety levels were lower than last time when I was early by 50 minutes.

 

Darkshine you might see this support group as providing an opportunity to test yourself in some areas. If you do decide to use it for this then put in place the control measures which you feel are neccessary for you to get through the experience. All tests however need to be realistic and we should not to try and take on the impossible. The truth is you might get to the front door do a U turn and head for home but may have achieved a lot and have created growth in your life.

 

As such I would be carefull about making comparisons with other peoples experiences, what is import for me is that you keep this well within your own perspective and realities of your own life and where it is at today. There is a cost in a lot of things we do in life, but this transaction ideally should create a return if the investment is properly thought out. There has to be a level of speculation however and a lot of this is about risk management. I can see you are weighing up the risks and trying to work out a potential strategy which is good. I would be carefull about spending a lot of effort in identifying every possibility to the point it becomes a list which acts as a justification not to go.

 

When thinking about similar issues in my own life I do set myself tests at times as stepping stones on a journey of self growth. If I had to say what was it that I was aiming for on the far bankside I would say it was the ability to trust my own gut instinct. To go back to my example of last week my gut instinct was for about 10 minutes in the car and around 5 minutes to find a parking space. In reality I was pretty close to my gut instinct about the journey but I am not at the point to fully trust my feelings and go into a freeplay environment, I still need lots of control elements to be in place. My gut reaction might also be not to be involved in a group of any sorts, but I might see that by going and gaining confidence I was in fact taking steps forwards so that I could start to lead a better life. I think the final goal is to live a life which is open and free of anxiety and fears.

 

I know for example I often look on the internet and see there is an art exhibition on in either Liverpool or Manchester which I am interested in. I long for the Star Trek days to arrive where I can be atomised and reassembled in a quiet gallery many miles away. I however know the technology is not here yet and so I face a number of hurdles which need to be overcome. I found my appointments in the last few weeks difficult and they kind of remind me that driving and navigating into a city to go to a gallery would be a difficult proposition for me at the moment, but I might not be far off. And so with a few more tests in the next few weeks some of which I might not enjoy I might be placed to make the decision to commit to going to an exhibition in the summer.

 

At the end of the day it is all about goals and targets in our lives and they are very personal things, but they are something we have control over if we choose.

 

Best wishes.

[LancsLad]

Lynda you posted whilst I was in the middle of my last reply.

 

Just wanted to say well done, and total respect for what you have achieved as I said in my first post I am aware of the enrgy it takes to do what you are doing and to be honest I do not think I have that level of strength in me at this moment in time, hats off to you!

[A-S warrior]

in short, go. worst that happens, you dont like anybody.

[LancsLad]

A-S Warrior I am not sure it is as simple as that.

 

I am not exactly sure what the worse that could happen as there are a lot of possibilities. I think this is an example where as an AS community we need to take a step back and understand the diverse nature of elements related to the condition which might be just one aspect in a complex life position. We are all very different and that means the costs to each of us to go to a support group in a particular location at a particular time will be very different though the outcome in some ways might be similar.

 

I often come back to the same point in a lot of my posts that in my opinion there is a massive difference between having 'needs' and working with them and being 'needy' requiring the support of others. I think for many the there is a real challenge with getting into an 'expansive' position of having and 'dealing with' needs. Often we can create very insular lifestyle where we are independant in so many ways and can deal with our immediate 'needs'. Often expanding our lives into other areas makes us very vulnerable and as a result we seek out a lot of reassurances, I think this post by Darkshine is a case in point. If I have a concern it is that I worry about people who are told repeatedly 'pull yourself together go and do A, B and C' after a bit under some duress they decide to do A, B and C but do so on pure emotional energy and feel compeled to jump in at the deep end. The whole process being exhausting because it is emotionaly driven and there is a lot of fear involved.

 

I have tried this approach to things in life and had got away with it and afterwards have tried to give myself a pat on the back and say you did well there, but in reality have been too exhausted to even think. As a result a lot of potential for personal growth has been lost, the reason being I did not feel I owned the proccess. This is not about being strong or weak by the way. I have felt like this after being asked to be a key note speaker with others telling me you will be brilliant. as a result I have gone out and spoken at large venues to over a 1000 people for and hour and have come off stage and people have said that was amazing and in truth I have curled up in a ball exhausted and have got very little from the event. I say this because I felt very weak throughout the whole process and it is easy for other people to place their own judgements on me, but were not in my shoes. In similar ways I have thrown myself in a situation where everyone has said you will be fine and it has ended in a serious panick attack and medical staff on the scene.

 

I am not trying to elicit sympathy for Darkshine rather I am trying to be objective and that requires a degree of empathy and respect. I think if we are to take on challenges and place ourselves as such in testing situations we want to make sure there is a good opportunity for personal growth otherwise what is the point in simply pleasing someone else and having a bad experience. My fear is that often people throw themselves emotionally into such scenarios with no belief feeling it will be a disaster. Often this proves to be true as a result they recoil in retreat and as a result self perpetuate their own belief systems that I am safe in my insular life but am 'needy' when I try to expand it. The next reaction is that as I am 'needy' and there is little help out there the best thing is to stay isolated.

 

The worst that could happen in scenarios such as this is that individuals trying to live up to expectations of others take a regressive step backwards in their own lives, and often when they do so the people who put the pressure on in the first place often have so little understanding of the realities of a situation they are unaware what has even happened let alone learn from the event themselves.

 

Darkshine is right to explore this from a position of needs and risk management around those needs. In some scenarios there might simply be too many variables around to make the outcome even reasonably predictable. I know in my own expereinces of AS support groups that there have been times were people in the group have been very angry and have been verbally agressive before breaking down and being very upset. Any group of Aspies are going to 'potentially' be a very volotile mix, that is our nature. As such having pre worked through exit strategies in place is a good idea as it shows an understaning of personal needs.

 

If I was pushed to give an answer I would say to Darkshine if this is simply about a stepping stone proccess for yourself, and in going to the meeting you feel you also tick a box with your care co-ordinator then my gut reaction would be don't go! I say this because this was Darkshine's gut reaction and I respect and in a way trust it. What I would say is, if the suggestion has acted as a catalyst to re look at your life goals and you feel you want to expand experiences then pick a test scenario which you feel more comfortable with but know will have a degree of difficulty in it. For me the most important thing is that people take steps forwards where they feel uncomfortable and vulnerable at first, these feeling mean the test is valid, but through rational thinking and decision making they reach a position where they feel I have 'needs' I can feel the anxiety levels surrounding these needs, but through good strategy on my part I am managing the situation reasonably well. For me this is about moving from a position of feeling 'needy' to 'needs management'.

 

I also think that in such testing situations it is a good idea at times to have a friend a safe distance away for support. In my own example this might be my partner shadowing me on a visit to an art gallery. She might sit in the back of the car in case I panick in a traffic system and feel I need help. I know the objective would be to go it alone and so might ignore her all day and not say a word, but having a support strategy might make all the difference. In a similar way when good friends are around to support us I think this can be really helpfull if we can set up scenarios so it feels like we acomplish things on our own. This might mean they are always 20 metres away and we have a sign such as scratching out right ear to say come in now I need help. The important thing being that they might have been there but the reality was they were not playing a significant role in the decision making or anxiety management proccess. Again people say things like 'go to the meeting the people are really nice you will be fine', quite possibly they might be and I will but how do I know that, and as such is there enough control in the process for it to be valid. For me a lot of this approach is about get there and if you are needy they will sort you out.

 

To conclude I think we are all very different and as such we are capable of different things. I think there is a problem here in making generalised comments which often simply place a level of guilt onto individuals who think I should be able to do that why am I so pathetic. This does no one any good and in fact can cause a lot of damage. We all have our limits and as such there are scenarios which would place immense levels of anxiety on any individual. I suspect I could take anyone from this forum up to Scotland this winter and do some vertical ice fall climbing. If we were a hundred feet or so up the cilmb and I was above you and started to untie the rope from my own climbing harness and as such remove the safety line between us I suspect the majority of people would become very anxious. I have come across people who would not, people who solo climb in such environments but they are very few and far between but they would all be able to tell me what would fill themselves with anxiety because they are brilliant risk managers and have nothing of ego about themselves. The point I am making is that as human we all can be placed into situations where we experience massive levels of anxiety, it is a natural human response, I know I can feel it. What we need to do is recognise this but also understand that for a lot of people many scenarios which are comfortable for us will not be for others.

 

I could take someone up an ice climb and for the majority of people it would feel like a massive achievement because it would be and that would be a fair and appropriate response on their part. To do so however I would need to pick a climb at the right level. I would need to ensure the conditions were favourable and that variables such as bad weather were eliminated. There would need to be a level of instruction in place and a bit of skill development in a safe place a foot or so off the ground. The equipment would need to be in top order. At this point we would put our harnesses on and join forces with the climbing rope. Importantly there would need to be a lot of faith and belief in what we are doing and respect for each others abilities though they might be very different. So how would we go about doing the climb, the answer is inch by inch, and some of those incees will be gained after a real battle, mostly with ourselves and our levels of anxiety. When we got to a really good piece of ice or a solid crack in the rock we would put in some security to anchor our efforts and provide protection. Personally I see life in a similar way a lot of the time. Life can throw up a lot of conundrums, such as why would I have less anxiety about about going ice climbing with a novice than I would about driving into a city to see an art exhibition. The answer is I guess its just the way I am, but I can work on it.

 

Just a few more thoughts.

Edited May 27, 2012 by LancsLad

[Special_talent123]

darkshine so things are clear and simple, are you on about a social group= youth club or a support group?

[darkshine]

darkshine so things are clear and simple, are you on about a social group= youth club or a support group?

 

One of the groups I don't know about as I lost the leaflet - it could be social or support.

 

The other group is called a social and support group (it doesn't clearly state which so maybe its a bit of both)

 

Lynda, LancsLad and AS Warrior - I will reply to your messages a little later

[indiscreet]

I would want to find out everything I could about the "group" before going. Specifically:

 

a) How long has it been operating.

What is the age range likely to be.

c) What actually happens.

d) What time does it finish.

 

If it's been going for some time you might find that it isn't easy to integrate and nothing is worse than sitting or standing around with people basically ignoring you. I would imagine it's better if there's a wide(ish) age range of people - all of whom are on the spectrum.

 

I can cope better if I'm given a clear picture of what's involved and how long it's likely to last - but maybe that's just me.

Edited May 27, 2012 by indiscreet

[A-S warrior]

One of the groups I don't know about as I lost the leaflet - it could be social or support.

 

The other group is called a social and support group (it doesn't clearly state which so maybe its a bit of both)

 

Lynda, LancsLad and AS Warrior - I will reply to your messages a little later

 

 

yes, on one of my heartfilled topics which has now been tainted, keep the topics on the appropriate topic, you asked for my thoughts, well there you have it junior. just telling you how i see it in this situation. not everything needs a 27 line essay.

 

p.s, nothing works better for me in a dialema situation than a decisive snap decision, its really worked wonders for me the last 10 or so years, some of the best things i ever did were after a decisive decision. and that was kind of what i was getting at earlier.

 

Edited May 27, 2012 by A-S warrior

[A-S warrior]

^ ^ just to add, im not angry lol even though i sound it, i wrote the last post with a grin on my face, not a frown ^ ^

[LancsLad]

A-S Warrior I agree with you on many fronts about often the best decisions we make in life are snap decisions. I truly believe that to live life in 'freestyle' mode where we feel free to express ourselves and act on our instincts, is a lifestyle aim for myself. In some ways I might be trying to recaputure some of that energy of youth when often we are fearless.

 

I think the issue is that for many of us as we progress through life things come along and we can get burnt from time to time and that hurt and the scars that follow are often slow to heal. As a result I think we often loose the ability to trust our gut instincts and can become prone to making mistakes, and importantly sometimes our natural judgements become weak. My own experience is that rebuilding confidence can be a slow and painfull journey. I know that following a major breakdown in my own life I tried to throw myself back into things to force the issue which in reality made things worse for me. I did achieve some things in that time but it was a big emotional scramble and to be honest my confidence did not grow at all rather it all felt more than a bit out of control. In my own life it was only when i really got a hold of the process and started consolidating my gains that i really moved forwards.

 

If I were to use my ice climbing analogy. In overcoming a section of the climb knowing we only have so much strength in our system one approach might be to simply go for it in a very positive way. I suspect A-S Warrior given your personality this might well be your approach, it was mine at your age. For some of us I think the answer might be to take things steadily and when we get to a point in the climb taking time to put in an ice screw or a rock anchor for security. There is a cost to this approach is we are hanging around and using up strength in the process and prolonging the durration of the climb. The point is for many the psychological aspects of this steady step by step approach are very important. If there is an approach I would be catious off it is expecting to be some how hauled up the route by someone on the other end of the rope, simply because if their strength fails them you are left in a right mess. However we choose to climb I feel it is better we do so in our own way and take responsibility in respect to our own energy and strength levels. This does not mean we can not be muttually supportive of each other.

 

At the end of the day we might all be trying to get to the same place. There are different ways to approach life and we have to work out which approach suits us best.

[robert7111a]

I say "go" and if you don't like it, then it's only one or two hours spent and you will have at least achieved 2 things:

 

1) I went, loved it and will go again

 

2) I went, hated it and will never go again

 

You could kick yourself for not going. You might be missing out.