Feeling low again, advice and comfort needed

[dekaspace]

Well im 26, only had 1 girlfriend that barely lasted weeks as it was more a sex buddy and she cared nothing for me and have had a lot of massive knock backs my entire life, making me feel low.

 

But looking back each year of my adult life(Since around 15 or 16) I realise how "good" I had it, when I was 21 I would give everything up to go back to when I was 16, now im 26 I would give everything up to go back to 21 and no doubt when im 30 will give everything up to be 26.

 

I have suspected Aspergers but going through hoops to get assessed since only been with current doc for 2 months and they wont help till my old doc sends them the medical notes. I also suffer from Dyslexia and dyspraxia.

 

I have always been "mr Average" but the middle-top range of average I.e I could do a uni course and be in the lower end of the class, but put me next to say a college student the same age be very advanced and have people jealous that Im at uni.

 

Also average in looks, not one of the pretty people I have always been geeky but not "butt ugly" However 3 years ago for no real reason I suddenly piled on the pounds, literally 2 stone in 2 weeks despite undereating and the weight is going up and up.

 

I did however a year before have a serious family crisis where my brothers fiance was murdered and he was wrongfully accused and put in jail for a year, my normally party animal brother(he in past has been offered recording contracts and abcking dancers contracts and is a ex Butlins Redcoat) became almost suicidal, drinking every night and lowering his standards for women as he just wanted to be loved and even dancing with gay men, the women he slept with(dont think im cruel for saying this please) were like 6 foot 5, butch and very fat and the sort of girl who normally would come home alone but he would chat to her, and he tried to force me with girls but if I did get somewhere he would butt in and take over.

 

To put it easily I'm the sort of person who has fallen through the cracks, Im too nice to get help from social workers since im not a troublemaker or someone with an addiction, but bad enough that I found it hard to do anything and even more so now as I cannot join any youth groups as I am over the magical age of 25 where people think you should have your life in order, and it feels like society is treating me as if I am an old man before my time.

 

I have had NO support apart from family over the years, and even then its my parents and brother, I come from a strict working class background yet my parents are lower class so they always looked down on us calling us lazy and making excuses(not my fault my dad became very ill when I first started school) whereas almost all my cousins went straight to uni at 18 and got jobs(apart from my junkie cousin who's mum is a hypocrite)

 

I think the Smiths song How Soon Is Now is the song to my life, I rarely leave the house(though go to town most days) and if I do go to a pub I go there alone, come home alone and cry so much I feel I want to die and have had "suicidal" thoughts most of my life, not that I want to hurt myself but my brain says its the easiest way out but I am "strong" enough to not do anything, same reason I dont become an alcoholic or drug addict I know a hour or two of bliss paid for by huge debt and feeling worse than when I began isnt worth it.

 

I have never been on a day trip with people since I left school 1 years ago, even then it was like twice in 4 years I went on one as the school never had any day trips and only maybe 1 weekend trip a year that my parents couldnt afford and my school were snobs putting everyone into classes based on the estate they came from, i.e everyone from a council estate went into the thick classes and everyone from the working class estates were put in the smart classes and the middle class students were the only ones allowed to be captains of say the football club or part of the drama clubs etc.

 

One of my main problems though to think about it isnt mine but no matter how low my life gets im told people have it worse, because Im not a drug user or alcoholic im not in huge debt(except I am) with serious health issues and people give these people more handouts than me to turn their life around so I sit in a bedsit with a dodgy landlord with all to show for my 26 years is dozens of dvds, a lcd tv and a computer, may sound a lot but I have no cash to improve myself and no opportunities and motivation.

 

The doctor wont prescribe me antidepressants despite my family history and me taking them when 18 due to their own words "Too many people get them these days so the Government is cuting back support" and I have been to various doctors and surgerys in the North of England and South of Scotland in the last few years who act the same, they say you need councilling first and the waiting list is around 6 months and you need a few assessments before they give you anything.

 

I dont know what more to say right now but back to what I said earlier, Im the big fish in the small pond, or that I have the potential to be hugely sucessful but im thrown into the big sea and put down even unintentionally by people who in many ways have had life far easier(though may be worse in some ways) breezing though making friends and uni and getting better grades so assume/act as if im not as hard working, which in some ways is mildly true, I try harder than people think but people assume as im not hyper and grateful for every little thing in my life then im bitter etc which is hurtful and then makes me fail as the amount of times people have treated me this way makes me feel so bad I miss classes or stop working and just bum about.

 

I feel so old as I go to uni and people even say to me that I look like 40 and ignore me or think im weird for chatting to them and clubbing is worse as people act as if im some massive pervert just for smiling at a girl I like just as im not under 21, dont dress in latest fashion and dont know how to be vain.

[alexmum2]

<'> Hi i don't know what to say except that i realy feel for you, you sound like a realy nice lad; just a thought have you thought of being a volunteer in your local area? you can chose to volunteer for what you feel you would be most comfortable doing ; whether it be wheel chair walking, visiting befriending it's a good way to meet people, they may not all be the same age as you but it would get you out of the house and you would be doing some good for some one which is always a good feeling. You never know you may meet some one like your self who needs a friend to go out with in the evenings or just to hang around with.

Another thought, how about getting a part time job say working behind a bar or glass collecting I know it doesn't sound very exciting or glamourous but it could lead to making friends and may open other oppertunities to socialise. Do you have a particular interest? because that would be another way out of you isolation. You sound really capable the fact that you do try and speak to people and get to know people.

This may sound extreme but what about a dtaing agency? Sorry if this is no help to you but I feel at your age you sound to young to be so unhappy; good luck and let us know how it goes.

[Sally44]

It sounds like you are missing the structure and motivation that school and uni provides by having that daily timetable you have to work through. Sometimes just writing down a plan of action for the next week/month/year etc can actually start to set you in motion to reach your goals. So start setting yourself some goals and a timeframe in which to find out about things and reach those goals.

I have an older brother in a similar situation socially and it is not easy when there are no social structures in place.

I think it would be useful to go to your GP and talk about depression, as that is a real possibility. If they say it has to be counselling, then get your name on the list.

I think looking at volunteering might be a good way to get out and meet people which would also improve yourself esteem and job prospects.

What career/job interests do you have?

You do sound like a nice young man and if it helps, there are lots of people in your same situation. You also sound strong enough mentally to get yourself out of this situation, but you do have to make some moves and take some risks. As they say, nothing ventured, nothing gained.

I would also mention to the doctor the weight gain as it might be nothing or it might be medical (eg. thyroid). But I can empathise because I have had two children and got gestational diabetes with both of them which I controlled with diet, but that still meant I put on about 3 stone in total over a 5 year period. Now I can't seem to shift it. But as summer approaches I am going to have another go. We are planning a beach holiday this year and the thought of bearing my excess white flesh makes me want to both laugh and cry!

If you do think you have Aspergers, have you looked at adult support groups? There is one in our area (unfortunately not near you), and they just meet once a month to socialise and talk about any difficulties individuals have had. These are adults, some working and with families etc. There might be something similar in your area.

[Tally]

Have you talked to your doctor about the weight gain? It can be a symptom of hypothyroidism - as can depression.

 

I would recommend you consider counselling, even though the waiting list can be quite long. You will never get to the top if you won't let them put you on it in the first place! It sounds as though you won't be able to access any treatment of any kind unless you go this route anyway.

[Mandapanda]

Hi dekaspace

 

I remember being very very lonely after college. I was living in a shared house and working shifts. I didn't really get on with people at work, and I had no friends from school. Fashionable clothes never suited me and my hair has never co-operated with any fashion 'styles'. My lifesaver was 18 Plus which was a social group for 18-30 age group, not sure if they're still going now, they were linking up with the Young Farmers groups a few years ago. They ran discos and sporting events with other groups around the country, and a weekly meeting locally. Although I enjoyed going and got on well with people there, I didn't make any lifelong friends, but I did meet my husband, as he was a member of a group in another town and we met at many of the joint events.

 

My husband does wargaming and the guys he has met through that are different, interesting and intelligent. People make fun of him at work sometimes, 'playing with toy soldiers', but it is a very sociable, tactical and fun thing to do. Many of them end up working in connection with wargaming, making the figures or painting them etc. My husband has learned so much about the Napoleonic Wars for wargaming, he has finally shown his intellectual potential which he never fulfilled at school.

 

I know what you mean about falling through the cracks. I took an overdose at 17 and had postnatal depression in 1993, but had no support and only received medication in 2004. I have only just now got a referral to the Mental Health Team.

 

All I can say is I never thought that at 45 years of age I would be married, with 2 beautiful children and living in our own house. Life can change for the better, you just need to keep going and keep looking for those opportunities which suit you and your personality and enable you to enjoy life more and make a few select friends.

 

Good luck. Thinking of you.

[Mumble]

I've been wanting to reply to the replies to this thread for a couple of hours, but rather than do so immediately, I wanted to give myself some time to think rationally. I also want to make it clear that this is a reply to the replies and not aimed at the original poster.

 

Some of the replies to this thread are exactly what you (as an ASD person) get in society - a society that, however well-intentioned, doesn't understand and actually can make things worse. I'm not intending this as criticism, but as education for want of a better word.

 

Many of the well meaning suggestions offered (not just here, in other threads and when people talk to you) are:

 

Sometimes just writing down a plan of action for the next week/month/year etc can actually start to set you in motion to reach your goals. So start setting yourself some goals and a timeframe in which to find out about things and reach those goals.

This seems really sensible, and fits in with the idea of a daily timetable, BUT, when everything seems unmanageable, even knowing what to put on the weekly planner is too much. 'Setting yourself goals' - but how do you know which ones, what if you choose the wrong ones, what about everything else, what if you don't know what the goals are or can't see the steps to achieve them? This isn't (as some may argue) making excuses, it is needing guidance and needing things broken down to their smallest units. I'm actually in a similar problem at the moment - I've been told to write my goals for the next few months - this is just too much and too overwhelming and only adds to my failure when I can't see a way to even do my planning. I don't know if I'm making myself clear, and the OP doesn't have a DX so this may be about something different, but the well-meaning suggestion of planning can actually be extremely anxiety provoking if you don't know how to plan. Planning is a non-instinctive skill and when social understanding is compromised it's even harder as you don't have a full grasp of what would be expected in a plan.

 

I think looking at volunteering might be a good way to get out and meet people

You also sound strong enough mentally to get yourself out of this situation, but you do have to make some moves and take some risks. As they say, nothing ventured, nothing gained.

My lifesaver was 18 Plus which was a social group for 18-30 age group

you just need to keep going and keep looking for those opportunities which suit you and your personality and enable you to enjoy life more and make a few select friends.

I've put these 4 quotes together because they're all pretty much the same - the message being, just go out and make friends. If only it were that easy. Reading things like this makes me feel worthless and I'm sure it has the same impact on some other people. If it were a case of simply going out and joining a volunteering group or a social group or a club, do you not think we would have done it? It's not a case of not knowing these opportunities - on my board above where I'm sitting I have details of a climbing club, a chess club, a canoe club, three different volunteering opportunities - I've got all the details of each, I know where they are, when they are, what I need to take, I've even been to the door of two of the clubs and I've observed volunteers from a distance whilst I've cried. I'd give anything 'just' to be able to go and 'take the risk'. It's not about knowing what the options are; it's about being able to do them, and the more that people suggest this club or that or this volunteering opportunity to me and the more I try to explain this absolute terror that physically stops me going and the fear I have before trying to go to one and then the awful feeling after I fail, the more stupid and alone I feel. I wish I could just go so even one of these clubs, I feel really alone not having any friends and not knowing anyone at uni, but it's not a case of knowing about opportunities; it's about being supported to take up these opportunities and saying like 'nothing ventured, nothing gained' are not supportive.

 

I want to reiterate that this isn't an attack on either of the posters I have quoted - their responses are very very common on here and in and across society - I've had similar from well meaning health professionals, educationalists etc. I totally understand the sentiments behind the suggestions, but I want to try and explain why it may seem that we sometimes reject such apparently good advice. 'Just go to a pub/bar and you'll meet people' - Not easy when you can't actually walk into the bar and certainly couldn't just talk to people. Society generally isn't very tolerant and if you make it into the bar/club and if some poor sole does try to talk to you, they quickly find an excuse to leave when you struggle to maintain the conversation

 

What would really help me to develop these skills, to be able to cope with going to clubs or volunteering and so get over those initial hurdles (after which it can become easier) would be a regular befriender who could spend a set amount of time with me each week, maybe go to a regular group with me and help me learn to integrate and learn skills I could transfer to other groups. My university is supposed to be providing this - they don't. I've been on the NAS waiting list for a befriender for over two years but they are so over-stretched and most volunteer befrienders only want to work with children. So I, and many others, are left without what could be quite simple support to help us. It doesn't require extensive training and qualifications; it requires commitment, willingness to listen and the ability to think outside of your own experiences about the 'friend making' procedures.

 

 

[TheNeil]

Hi,

 

OK, been there, done that - want to join the club? Seriously though, there are a lot of people on the forum who've been in the same situation (me included).

 

It is frustrating when people try to make you feel 'better' by pointing out that other people have it worse. And? Just because someone else is in a worse situation doesn't mean that you can't feel sorry for yourself (if this was the casethen there'd only be one person in the world who was allowed to feel sorry for themself). How you respond to your situation is more important than anything else though. This might sound strange but it's actually OK to feel low, to 'wallow' and feel sorry for yourself. Eventually though you have to do something to get yourself out of that situation (otherwise you'll never move forward)(and, while this may sound harsh, you've got to do it yourself - help isn't out there). So what can you do?

 

The obvious answer is to 'go out and meet people'. Ha! All it takes though is to make one friend and that can be the stepping stone to something further...if that's what you want. How to get that 'first friend' can be tough but it isn't impossible. Going out and meeting people can be hard, it might even be impossible depending on you as a person, but sitting around feeling sorry for yourself long term is most definitely not the way to move forward (hope that doesn't sound harsh, it isn't meant to).

 

Can you join a club or organisation? Maybe you can, maybe you can't - only you know the answer to that. If you can then that's an option. If you can't then you have to come up with alternatives. What about joining something online? This might not sound ideal in the long term but in the short term it can help to improve your self-esteem, boost your confidence (even if it's only a little bit) and who knows, you might find someone that you want to meet in 'real life' - this forum has meet-ups every now and then and they're usually a good way to get to know people (if you want a more precise example, I've been to several meet-ups, made non-ASD friends there, and it was through these friends that I was dragged out on a Saturday night, ended up in a bar (eek) talking to a complete stranger - hey presto, we're now in a relationship. It can work).

 

As for feeling 'old' then this very well may be the case. Alternatively it could be other factors that make you actually feel 'different' (rather than actually 'old'). Age, in a way, is no actual barrier and if you come across people with similar views, similar sense of humour etc. then age shouldn't come into it (and if it does then those people aren't worth bothering with anyway).

 

When it comes to clothes then dress in what you feel comfortable in (strange as it may seem, the old adage of 'clothes maketh the man' is very much true). If you find that you aren't comfortable or that you feel 'old' then you need to do something about it. How? Go out and look. Look at what people are wearing. Some of it will look stupid, some of it will be totally not you etc. but there will be things, looks, styles etc. that you do like and that should give you a clue to where your tastes lie. It's not about 'fashion' or 'impressing people' but identifying what you like.

 

I suppose what I'm trying to say, and I apologise if this comes across as being 'harsh', is that the only person who can make a difference to your life is you. That doesn't mean being 'upbeat' all the time, doesn't mean being 'happy' all the time, doesn't mean that you're always working towards a 'goal' or whatever (but having a long term 'goal', no matter how 'ambiguous' does give you something to focus on) it just means identifying your weaknesses and problems, and working out ways to either solve them or work around them. And if you can't identify problems or work out solutions? Then you ask for help. You ask people who've been there, you try things, and you have to bite on the bullet. What you don't do is try to solve everything all at once - one step at a time, start with something 'small' (maybe breaking a routine, or buying some clothes that are a little bit outside your 'comfort zone'). The confidence boost you get will start to feed itself, giving you confidence to try something else...and round and round it goes (and if something goes wrong? Fine, try again, try something else, go back to doing something 'small', but never give up).

 

Although it might not seem like it, you have achieved a lot in your life (even just from the things you've written so far) - you're 26 and you're at university. That's an achievement. Maybe you could have gone when you were younger. Maybe this... Maybe... Never mind the 'maybe's, you focus on the positives as the 'negatives' will get you nowhere. Fine to acknowledge them (and actually pretty useful when trying to work out your 'problems') but don't let them beat you.

 

Ask yourself the question, do you let your problems rule your life or do you say 'no more' and do something about it?

[frogslegs]

Mumble, I am impressed by your answer. You are right, we have no idea how you feel and we probably sound patronising. Sorry (I say 'we' because I could have written some of those answers). Thank you mumble <'> <'>

[call me jaded]

Could you join the youth group as a volunteer?

 

Ros Blackburn (adult with autism) made me laugh when she spoke about joining a trampolining club: she said she should have started at a club 45 miles away and every time she got thrown out of one she could have moved closer to home - she travels 45 miles a couple of times a week.

 

Personally speaking, as an adult without autism, I was not comfortable in my own skin until I was heading for 30 and stopped thinking about what other people were thinking about me.

[Karen A]

Hi dekaspace and everyone else.I have a few thoughts that I thought worth mentioning.I have read through the posts and the responses.I have a history of mental health difficulties which were not diagnosed but are now recognised by health professionals.They include periods of anxiety and depression.My partner who I have known since he was 19 has also experienced periods of depression.He was sufficiently unwell to have felt suicidal at times.We are both very well now.

We are also parents of a child with Asperger Syndrome.

Some of the advice appears to pressume that ASD is likely to be an issue.I just wanted to say that unless I am missing something everything that you have posted could equally apply to an adult with depression or anxiety or both.As mental health problems are relatively common and AS is not surely it would be logical to request an appointment with a mental health team ?

Mumble I agree with what you have posted.However as an individual who has suffered from periods of extrememe anxiety that are related to mental health difficulties rather than ASD I think that your responses to the posts posted would also all aply.I have had periods when I could not plan beyond what to buy for tea.I have also had times when going outside the house or talking to one person would be a major challenge.

I am attempting to say whilst hoping not to upsett anyone that the information quoted by mumble whilst well intentioned could apply just the same to an individual with depression or anxiety.

I am repeating myself now but dekaspace I think it is worth saying that before any professional would consider AS as a possibility they would want to rule out depression or anxiety as being the main issue for you.Also as Tally has said even if AS is one of the factors in your current situation councelling or treatment for any mental health needs would also be likely to be the first thing recommended.A diagnosis of ASD might help you to understand yourself better.However there are no treatments available that would treat ASD as such.Even for adults with a recognised diagnosis of ASD there is vitually no specialist support available within the NHS and minimal support elsewhere.Karen.

Edited May 6, 2009 by Karen A

[Karen A]

http://www.asd-forum.org.uk/forum/index.php?showtopic=18801

dekaspace.This link on the Forum includes a list of organiations and charities that provide support,advice and information for people with anxiety and depression.It might be useful.Karen.

[Sally44]

Point taken Mumble. I hope Dekaspace posts back so we know if those suggestions are totally off the radar for him. I know that organisational skills are somewhat lacking in my own son, and when I posted that I was thinking to myself either he can or can't do that, and if he can't he'll say so. But I suppose he might not, and just slink away feeling even worse - which wasn't the intention. I think these forums are good for brainstorming ideas, and hopefully those reading the replies will realise that. It is impossible to get an accurate picture of a person or a situation from one post.

I agree that a be-friender service would be brilliant. But as that doesn't seem to be available, does anyone else posting know of a similar type of support service.

Would an adult support group for those with an ASD be more relevant? I know it all depends on what the groups aims are and who makes up the group etc.

And, as Karen A posts, it might be more to do with anxiety or depression. So I really think a trip to the GP is needed to clarify things.

[Karen A]

Hi all.I have just walked over the school with Ben and back wondering how to word this post so I hope I will not offend anyone of the numerous people I might.

I thought I would start by saying that I could fit into numerous cattegories.

Myself and my husband are regarded as mental health service users because we get weekly support from CAMHS.Due to my family background I am a strong advocate of individuals with mental ill health.

Our sons are both involved in groups that are run by volunteers.Both my husband and myself volunteer in various activities for young people.

Ben has AS and is likely to be classed as a vulnerable individual even as an adult.

I am working on the basis that the internet Forums provide effectievely no way of monitoring individuals that post other than if Forum rules have been broken.So an individual can post anything that may or may not be true as long as no Forum rules are broken.

So this comment in no way reflects my opinion regarding Dekaspace because I know absolutely nothing other than the information given and would not be qualified anyway to give an opinion.

 

However as a parent I do feel very srtrongly that a few things need to be considered.

Volunteering involves access to individuals who will be considered vulnerable.Effectively now all volunteering is rightly subject to tight controls.Previously volunteering was not subject to the same tight regulation as payed work which is unforunate.

So for any work offered in a voluntary capacity in any reputable organisation a number of things would now be required including evidence that an individual is suffieciently mentaly and physicaly well to volunteer.A criminal records bureau check regarding eligability to work with children and young people would be needed.Most voluntary organisations would also ask for and check references.

This mat appear over the top.However I could consider the matter another way.

On the Forum which is an ASD Forum parents frequently comment on the standard of support provided for children with SEN.Parents would rightly be up in arms if un police checked untrained individuals were offered work in schools even as volunteers.

I do not think that volunteering in any other capacity is any different.I find the term wheelchair walking a bit offensive to be honest.The wheelchair has an individual in it who would rightly have the same rights to care and protection as any child or adult on the Forum.I am not using the term protection in a patronising way either.

 

Although I am not sure about the level of assessment required before befriending would be offered or before an individual would be able to attend an AS related group I do have similar concerns.As a parent of a child who may well attend such groups in the future I would want to know that screening would be in place as regards the suitability of individuals to attend.

Certainly anyone running a befriending scheme would want to ensure that very tight criteria were met before involving volunteers in working one to one with individuals...for the safety of those doing the befriending as much as anyone else.

 

I do want to be very clear that this post in no way refelects any opinion regarding Dekaspace or anything included in his post.It is based on the fact that this is an internet Forum and I have no idea about him at all.Karen.

Edited May 6, 2009 by Karen A

[Karen A]

Hi.I thought I would add that as regards being a befriender all voluntary organisations also screen and monitor individuals who are offering to be befrienders for the same reasons as I have posted above.I would not want either of my lads to be supported by someone who had not been thoroughly screened .

Actually I would not accept being befriended by an individual who had just posted on an open Forum.Karen.

Edited May 6, 2009 by Karen A

[Mumble]

Point taken Mumble. I hope Dekaspace posts back so we know if those suggestions are totally off the radar for him. I know that organisational skills are somewhat lacking in my own son, and when I posted that I was thinking to myself either he can or can't do that, and if he can't he'll say so. But I suppose he might not, and just slink away feeling even worse - which wasn't the intention. I think these forums are good for brainstorming ideas, and hopefully those reading the replies will realise that. It is impossible to get an accurate picture of a person or a situation from one post.

I agree that a be-friender service would be brilliant. But as that doesn't seem to be available, does anyone else posting know of a similar type of support service.

Would an adult support group for those with an ASD be more relevant? I know it all depends on what the groups aims are and who makes up the group etc.

And, as Karen A posts, it might be more to do with anxiety or depression. So I really think a trip to the GP is needed to clarify things.

Thanks I've been worrying all night about what I wrote and hoped it wouldn't be taken as an attack because it wasn't intended as such - I just get so frustrated sometimes I find it difficult to control my reactions when very well-meaning people say 'oh just go out and join X club' - I really, really wish I could, and all the research I've done into different clubs and groups is testament to wanting to - I've even got as far as contacting people about volunteering, but once things get to the 'doing' stage I freak out then get angry with myself in a self-perpetuating cycle.

 

On adult support groups - (again, hope this comes across right) - I have been invited to ones near where I live but even then there's the walking into a place and meeting people I don't know. Unfortunately it doesn't help knowing that others might have the same issues when I can't get through the door For me, I know these issues have built up over a very long time and will be much harder to sort now - had I had support ten years ago when I was becoming more independent, things might be very different now.

 

Mumble I agree with what you have posted.However as an individual who has suffered from periods of extreme anxiety that are related to mental health difficulties rather than ASD I think that your responses to the posts posted would also all apply.I have had periods when I could not plan beyond what to buy for tea.I have also had times when going outside the house or talking to one person would be a major challenge.

I am attempting to say whilst hoping not to upset anyone that the information quoted by mumble whilst well intentioned could apply just the same to an individual with depression or anxiety.

I completely agree, and I do have (diagnosed) severe anxiety on top of my ASD. I have no idea where the boundaries of each are but personally I would say the anxiety is one of the most disabling things I have in that it stops me even being able to try communication and develop skills here.

 

I agree with what others have said - that whether this is ASD or not, there are issues the OP needs to address, so the referral to counselling (who could then refer on if necessary) seems like a sensible step. If nothing else, it shows you are willing to try the options available.

 

[Mumble]

Hi.I thought I would add that as regards being a befriender all voluntary organisations also screen and monitor individuals who are offering to be befrienders for the same reasons as I have posted above.I would not want either of my lads to be supported by someone who had not been thoroughly screened .

Actually I would not accept being befriended by an individual who had just posted on an open Forum.Karen.

Absolutely - and I wouldn't ask here. The issue is that there are too few befrienders and even fewer willing to work with adults.

 

[Karen A]

Thanks I agree with what others have said - that whether this is ASD or not, there are issues the OP needs to address, so the referral to counselling (who could then refer on if necessary) seems like a sensible step. If nothing else, it shows you are willing to try the options available.

 

Mumble.That is a very good point.In the current funding climate in the NHS it would be almost impossible anyway to obtain a referal to specialist services if all possible provision at local levels has not been at least tried.Karen.

 

[Karen A]

Absolutely - and I wouldn't ask here. The issue is that there are too few befrienders and even fewer willing to work with adults.

 

Mumble.I am certain that you would not ask here.

I think you probably know the things I have posted.

I am not just posting this information for you.I am aware that some people reading the Forum may not be as aware of the issues as yourself.

I cannot think of a way to post this that will not upsett someone.So I will just have to be honest and do my best.

In the past paedophiles have deliberately become befrienders and have become involved in voluntary groups as a way of getting to meet people.

They will carefully plan which groups are likely to be easy to become involved in.

They will also plan very carefully how to meet specific individuals.

This would include individuals with ASD.They may deliberately look for individuals who may be isolated or who may be easily manipulated.People with ASD might be more vulnerable due to the sorts of difficulties associated with ASD.

 

 

 

I do fully understand that there is a major issue regarding the numbers of befrienders available.

However the answer would need to include finding individuals who are vetted appropriately,monitored,considered suitable for the role and offered adequate training.

I remember the days which were not long ago before TAs in schools.

Support was provided by mums who helped out free for the odd hour.They had no training,vetting,pay or qualifications.

I can only guess what the reponse on the Forum might be if a child with AS was offered that level of support in school now.

I don't see why support for adults should be any different.

Why should the support offered to adults be a befriender who probably has limited training and awareness regarding ASD ?

 

Edited to add.Fortunately now due to police checks and very close monitoring the situation I have mentioned is much less likely.So please don't worry Mumble.Organisations like the NAS are very aware of child protection and protection for vulnerable adults.They strict policies and procedures in place.Karen.,

Edited May 6, 2009 by Karen A

[Karen A]

Hi Sally.I thought in response to your question about support groups and befriending I would offer a few general comments.

I am not an adult with AS and you will know that Ben is only 10.However I thought it worth making some general comments based on my knowledge from the Forum.

I am sure others will correct me if I am wrong.

 

There are very few befriending schemes for adults with AS.I have not come across anyone who has been able to access the service even with a diagnosis.

There are a few groups for adults but they are not available everywhere and are very new.

There is virtually no specialist counselling for adults with AS .Some mental health services will support adults but this is usually where there are clear mental health needs.Few counsellors or psychotherapists working with adults have experience or training in ASD.

I think that the vast majority of support for adults with ASD is probably provided by families or is Forum based or web based here or elswhere.There is very little voluntary or statutary provision.

Some couples with one or both partners with AS have found couples or individual counselling helpful.However as with all counselling or psychotherapy it is not easy to find professionals who have experience or understanding relating to ASD.I think relate have a bit more awareness recently.

 

The few services that are available are incredibly hard to access even for those who have a diagnosis of ASD [which is unusual in itself for an adult previously undiagnosed].

 

Karen.

Edited May 6, 2009 by Karen A

[Mumble]

Why should the support offered to adults be a befriender who probably has limited training and awareness regarding ASD ?

Can you please write that in very large letters and post it to my university's disability department.

 

Incidentally (and I'm slightly worried we're going a little ) I talked to my counsellor today about exactly the types of issues discussed here - how do you take that first step, how do you join a club/volunteer when you really want to but severe anxiety holds you back. I'm not sure we found a solution (other than a befriender which I'm supposed to have and she's going to chase up with the uni but I don't hold out much hope) but I did feel for perhaps the first time away from this forum that the issue was understood and the difficulty of falling between services aimed at people with more full-time support needs and 'normal' services realised.

 

I realise that some people might think I'm wallowing in negatives and putting across an image of ASDs as can't/won't. I'm sorry some people are a little too narrow-minded to see things differently. Yes, it's true that at the moment I'm struggling, really struggling, but hey, I've just had everything I enjoyed doing and could do independently taken away from me and no support put in place to recognise that I am now totally alone and trapped. So yes, maybe I am wallowing a bit, being pessimistic, but everyone has up and down times and I would hope we could all support each other through these rather than sit in judgement.

[Karen A]

Can you please write that in very large letters and post it to my university's disability department.

 

Incidentally (and I'm slightly worried we're going a little ) I talked to my counsellor today about exactly the types of issues discussed here - how do you take that first step, how do you join a club/volunteer when you really want to but severe anxiety holds you back. I'm not sure we found a solution (other than a befriender which I'm supposed to have and she's going to chase up with the uni but I don't hold out much hope) but I did feel for perhaps the first time away from this forum that the issue was understood and the difficulty of falling between services aimed at people with more full-time support needs and 'normal' services realised.

 

I realise that some people might think I'm wallowing in negatives and putting across an image of ASDs as can't/won't. I'm sorry some people are a little too narrow-minded to see things differently. Yes, it's true that at the moment I'm struggling, really struggling, but hey, I've just had everything I enjoyed doing and could do independently taken away from me and no support put in place to recognise that I am now totally alone and trapped. So yes, maybe I am wallowing a bit, being pessimistic, but everyone has up and down times and I would hope we could all support each other through these rather than sit in judgement.

 

Mumble <'> <'> <'> Any adult would be finding it difficult coming to terms with the seizures and the new limitations created by them regardless of ASD.It is also no time at all since you had meningitis which is a major illness.I will shout at anyone who gives you a hard time. Karen.

 

[Mandapanda]

I've put these 4 quotes together because they're all pretty much the same - the message being, just go out and make friends. If only it were that easy. Reading things like this makes me feel worthless and I'm sure it has the same impact on some other people. If it were a case of simply going out and joining a volunteering group or a social group or a club, do you not think we would have done it? It's not a case of not knowing these opportunities - on my board above where I'm sitting I have details of a climbing club, a chess club, a canoe club, three different volunteering opportunities - I've got all the details of each, I know where they are, when they are, what I need to take, I've even been to the door of two of the clubs and I've observed volunteers from a distance whilst I've cried. I'd give anything 'just' to be able to go and 'take the risk'. It's not about knowing what the options are; it's about being able to do them, and the more that people suggest this club or that or this volunteering opportunity to me and the more I try to explain this absolute terror that physically stops me going and the fear I have before trying to go to one and then the awful feeling after I fail, the more stupid and alone I feel. I wish I could just go so even one of these clubs, I feel really alone not having any friends and not knowing anyone at uni, but it's not a case of knowing about opportunities; it's about being supported to take up these opportunities and saying like 'nothing ventured, nothing gained' are not supportive.

 

Hi Mumble

 

I accept your point about how difficult you find it to even go into a club of any sort. I was offering the advice with reference to ASD, ie. that if people can find the sort of club with other individual people, it might be easier than, say, going to a nightclub (something I absolutely hated!). I don't know if dekaspace knows what different things are out there, so was only offering the information based on my personal experiences, and also hopefully offering an example of how life can change when it had seemed so bleak at one time.

 

If dekaspace has the crippling anxiety that you have then of course it does make everything that much more difficult. My son is only 12 but anxiety has stopped him going to school for almost a year now. He has even been unable to do things he enjoyed doing before. So I do have the greatest sympathy for anyone suffering from anxiety (and depression). As far as I can tell from what I have read and heard about, Cognitive Behavioural Therapy (CBT) is recommended for anxiety, but I know it does not work for everyone and is not suitable for everybody.

[Mumble]

I accept your point about how difficult you find it to even go into a club of any sort. I was offering the advice with reference to ASD, ie. that if people can find the sort of club with other individual people, it might be easier than, say, going to a nightclub (something I absolutely hated!). I don't know if dekaspace knows what different things are out there, so was only offering the information based on my personal experiences, and also hopefully offering an example of how life can change when it had seemed so bleak at one time.

 

If dekaspace has the crippling anxiety that you have then of course it does make everything that much more difficult. My son is only 12 but anxiety has stopped him going to school for almost a year now. He has even been unable to do things he enjoyed doing before. So I do have the greatest sympathy for anyone suffering from anxiety (and depression). As far as I can tell from what I have read and heard about, Cognitive Behavioural Therapy (CBT) is recommended for anxiety, but I know it does not work for everyone and is not suitable for everybody.

Hi Mandapanda I accept that way of looking at things too - we don't know the whole background so don't know what possible approaches/solutions the OP is already aware of or has tried.

 

I do think, as other posters have also pointed out, issues around anxiety (and/or depression) make the ASD issues harder to cope with but it's difficult to work out which is which.

 

CBT is supposed to be a useful approach provided that, where needed, it is adapted to take account of the differing thinking styles of ASD individuals. I'm having sort of CBT at the moment (although we tend more just to talk about issues that are troubling me - particularly at the moment) and am waiting for PCT funding for ASD specific CBT. I think, again as has already been said, it would be worth the OP exploring counselling options as a first approach.

 

[Karen A]

Hi Mandapanda I accept that way of looking at things too - we don't know the whole background so don't know what possible approaches/solutions the OP is already aware of or has tried.

 

I do think, as other posters have also pointed out, issues around anxiety (and/or depression) make the ASD issues harder to cope with but it's difficult to work out which is which.

 

CBT is supposed to be a useful approach provided that, where needed, it is adapted to take account of the differing thinking styles of ASD individuals. I'm having sort of CBT at the moment (although we tend more just to talk about issues that are troubling me - particularly at the moment) and am waiting for PCT funding for ASD specific CBT. I think, again as has already been said, it would be worth the OP exploring counselling options as a first approach.

 

Hi.CBT,counselling and any other mental health provision provided through the NHS is only likely to be offered once a thorough mental health assessment has been carried out by a mental health professional any way.It would then depend on what is available locally and what the individual and professional agree regarding what might be helpful.Some professionals use various approaches .

 

It is possible to obtain counselling privately.However it is worth checking the qualifications,experience and knowledge of counsellors and psychotherapists.It is preferable to use a counsellor or psychotherapist that is registered with UKCP.[The details are on the link].It is also worth having an initial appointment to assess whether the counsellor and individual can work together.Provision privately can be expensive so it would be worth investigating options funded by the NHS first.

Some local charities also offer counselling at reduced costs to those on low income however it is unlikely to be ASD specific.

Another avenue worth exploring for the OP might be provision offered through the university.......[Mumble don't laugh or shout too loud ].Karen.

 

[Mumble]

Another avenue worth exploring for the OP might be provision offered through the university.......[Mumble don't laugh or shout too loud ].Karen.

I won't On the health care side, I can't fault my uni health service (but they are separate from the uni) - they have given me support over and above what would be expected because they have, in effect, had to 'pick up the pieces' when the uni support has failed, repeatedly. My counselling is provided through the uni health service, and if the OP is at uni, it would be worth exploring what they can offer as the waiting lists are generally shorter (as they recognise students move on etc.) and you can get more sessions than would be available on the NHS. Indeed, my GP is keen that I make the most of what is available now in order to put together ways of helping myself because we all, unfortunately, recognise that the support may not be there when I leave uni.

 

[dekaspace]

Well different people have said to me I hae the signs of aspergers, the professor from the dyslexia report, my childhood literature lecturer and just got some freebies from Freecyle but was suppsoted to ring person yesterday but was stressed so left it to today and the woman was nice and sent her hsuband round with the stuff in his car and we spoke for about 20 minutes as he asked why I was stressed, I said I am being kept awake at night by students and have disabilties and was waiting for an aspergers assessment, he said he guessed right away that I had aspergers as his son and daughter have it and he said that I should claim DLA and complain to the uni that I am being discriminated against as I might fail my year as #i missed an exam yesterday as I was kept awake all night so got dates mixed up.

 

I am waiting to see a doctor at 8.40am Friday, I hope I can wake up early enough.

 

Oh and a bit of my history, I was at uni a few years ago part time and the student welfare wnated me assessed for ADHD as I have no attention span.

 

And I am essentially a big kid, I am like a milder version of Sheldon from The Big Bang Theory, not rude but I get very obsessed with my own problems and can get grumpy easily though im a very sweet person.

 

I see kids and envy them and just want to go to the park and play or go to a kids club at a holiday park and play party games and that is what is causing my mild depression since im getting too old every year when I was 21 I could get away with hyperness and kiddyness as girls found it cute but now people think im a weirdo as I want to read comics and do kiddy things like pillow fights and giggle and tickle(Though I hate asking or doing it at same time as even someone touching me gives me shivers and freaks me out, henc eme being single)

 

I mean I literally when hyper sing karaoke in my room and so loud that I want people to hear it and laugh at me, and literally jump up and down and wave etc like a kid on a sugar rush.

 

I cant handle alcohol as it freaks me out and 1 drink turns my stomach and it just makes me want to slap and punch my head and up until I was around 20 I would literally bang my fists against my temples(thats where I get stressed) or headbutt walls and tables.

 

A problem of mine is I am afraid of new things and that is why I have dropped out of colleges over and over because im afraid of ending my youth and settling down, I hate being single but put a girl in front of me literally putitng it on a plate and/or being obvious I freak out and want to go in my room and cuddle myself. I still have a 21 yaer old teddy bear which symbolises myself, I lost it once a few years ago when working and almost had a breakdown as that is what keeps me sane as it has been the only thing there for me my entire life.

[frogslegs]

.

Edited May 6, 2009 by frogslegs

[Sally44]

Thanks I've been worrying all night about what I wrote and hoped it wouldn't be taken as an attack because it wasn't intended as such - I just get so frustrated sometimes I find it difficult to control my reactions when very well-meaning people say 'oh just go out and join X club' - I really, really wish I could, and all the research I've done into different clubs and groups is testament to wanting to - I've even got as far as contacting people about volunteering, but once things get to the 'doing' stage I freak out then get angry with myself in a self-perpetuating cycle.

 

On adult support groups - (again, hope this comes across right) - I have been invited to ones near where I live but even then there's the walking into a place and meeting people I don't know. Unfortunately it doesn't help knowing that others might have the same issues when I can't get through the door For me, I know these issues have built up over a very long time and will be much harder to sort now - had I had support ten years ago when I was becoming more independent, things might be very different now.

 

 

I completely agree, and I do have (diagnosed) severe anxiety on top of my ASD. I have no idea where the boundaries of each are but personally I would say the anxiety is one of the most disabling things I have in that it stops me even being able to try communication and develop skills here.

 

I agree with what others have said - that whether this is ASD or not, there are issues the OP needs to address, so the referral to counselling (who could then refer on if necessary) seems like a sensible step. If nothing else, it shows you are willing to try the options available.

 

Mumble, I wanted to ask a question that goes slightly off topic. As you have explained very well how a person may have difficulties that make them unable to use the more typical routes to gain access to successful social interaction - I couldn't help noticing that the same difficulties could be applied to academic situations causing various difficulties ie. "just follow the verbal instructions", or "ask someone for help", or "plan your work project" etc - and that children and adults maybe struggling in the classroom (or work environment) for exactly the same reasons. And I presume that it is hard to actually put your finger on 'why' you can't do something, especially when you are a child. Would you say that is correct?

 

[alexmum2]

Karen A I would just like to add that the term wheel chair walker is the one given by the charity age concern so if you have any issues with that then you should take that up with them and not critisise the poster. I am a volunteer and thats the term the charity uses. Also I find your comments on my suggestions offensive, surley it is up to the individual as to what advice they wish to take and not up to you to say whether that advice goodor is not good advice.

I am happy to read any advice anyone one wishes to give me and I am sure deskspace would be too, whther or not he feel s he could do any off the things suggested.

Hope you find all the advice helpful in some way deskspace.

[Karen A]

Karen A I would just like to add that the term wheel chair walker is the one given by the charity age concern so if you have any issues with that then you should take that up with them and not critisise the poster. I am a volunteer and thats the term the charity uses. Also I find your comments on my suggestions offensive, surley it is up to the individual as to what advice they wish to take and not up to you to say whether that advice goodor is not good advice.

I am happy to read any advice anyone one wishes to give me and I am sure deskspace would be too, whther or not he feel s he could do any off the things suggested.

Hope you find all the advice helpful in some way deskspace.

 

Hi.I had not come across the term wheelchair walker before.I am sorry if I come across as critical.I worked in the NHS for many years and so maybe that is why I come across as a bit over formal.I do not know what I have said that is offensive.I don't think I have broken any forum rules.However if you think that what I have posted is offensive then you are within your rights to report them to the moderators.Karen.

 

[Mumble]

Mumble, I wanted to ask a question that goes slightly off topic. As you have explained very well how a person may have difficulties that make them unable to use the more typical routes to gain access to successful social interaction - I couldn't help noticing that the same difficulties could be applied to academic situations causing various difficulties ie. "just follow the verbal instructions", or "ask someone for help", or "plan your work project" etc - and that children and adults maybe struggling in the classroom (or work environment) for exactly the same reasons. And I presume that it is hard to actually put your finger on 'why' you can't do something, especially when you are a child. Would you say that is correct?

I think that sounds about right. I'll think about it and get back to you again if I change my mind. One thing that I think 'helped' me get through mainstream (or to think about it another way - contributed to me going undiagnosed) was that I had a very traditional education generally - a sitting in rows, face the front, don't talk, very little group work or discussion type. I think I would have really struggled if I had had an education more similar to teaching and learning methods currently used. As I got older and had to make choices about subjects (from GCSE and then with modules at uni) I was careful to choose options that wouldn't show me up (so at uni, I first looked at the assessment method first - if it said presentation or group work I crossed it off no matter how much I would have wanted to do the module - it limits your options but it's about survival). I certainly still have many problems now (I'm doing a PhD) with instructions that are too vague or with non specific plans and timetables. I'm struggling at the moment because I really need day to day planning, not three monthly planning as the uni thinks I mean when I ask for help with planning. It can be so difficult to get help when you struggle to explain (or even know yourself) exactly what the help you need is.

 

[Karen A]

I think that sounds about right. I'll think about it and get back to you again if I change my mind. One thing that I think 'helped' me get through mainstream (or to think about it another way - contributed to me going undiagnosed) was that I had a very traditional education generally - a sitting in rows, face the front, don't talk, very little group work or discussion type. I think I would have really struggled if I had had an education more similar to teaching and learning methods currently used. As I got older and had to make choices about subjects (from GCSE and then with modules at uni) I was careful to choose options that wouldn't show me up (so at uni, I first looked at the assessment method first - if it said presentation or group work I crossed it off no matter how much I would have wanted to do the module - it limits your options but it's about survival). I certainly still have many problems now (I'm doing a PhD) with instructions that are too vague or with non specific plans and timetables. I'm struggling at the moment because I really need day to day planning, not three monthly planning as the uni thinks I mean when I ask for help with planning. It can be so difficult to get help when you struggle to explain (or even know yourself) exactly what the help you need is.

 

I know it is way off topic.

But I wonder if anyone has done any research regarding whether the increased numbers of parents wondering about their children having AS could be partly related to the impact of changing teaching methods.

I am 43.When I think about the classroom layout and teaching methods when I was at school they were very different to how they are now.Structured lessons with very little group work or social interaction during lesssons.Individual desks all facing the same way.Now most of the curriculum even in secondary school appears to involve large amounts of group work and social interaction. I never even stayed for lunch all the way through school but went home every day for dinner.So there were far fewer demands placed on me regarding social skills.Karen.