Aspergers SUCKS.

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Sounds great in theory, but it depends on the severity of the AS.

In my twenties I had a 'normal' life - good job, car, my own place, women - but it was a hell of a struggle to get these things (with a lot of luck), and, bit by bit, it all fell apart, and I had a major breakdown aged 29. I spent most of my 30s living as a recluse (well not exactly a 'recluse', but certainly not living the normal, successful, life I wanted). I knew there was something wrong with me, but I didn't know what. Aged 40, I was diagnosed with ASD. Over the past year or two my condition has improved DRAMATICALLY (as I've explained on other threads), and suddenly, poof, everything has fallen into place, including the job of my dreams. I could never, ever, ever, have landed this job 10 years ago, or even 5 years ago. My ASD had to improve first. This isn't pessimism or an excuse; just the truth.

SOME people on WP could do better than they are, and have an uneccesarily bleak attitude, but some (probably most) people here are simply too socially disabled to just 'get on with it'. This is the problem with WP: there's a very wide spectrum of severity; maybe too wide for us to all relate to each other!

Plus, job success isn't all there is to it. I've done okay with regard to that, but my personal situation is a freaking mess and as far as I can tell it always will be because I can't seem to "read" people and although I have good intentions I can't seem to translate those into actions that "prove" those to other people. That part of it makes me want to commit suicide rather than spend the rest of my life alone, and if I didn't have three children I would have already done it. Every time I think I might have a shot at a relationship with another person that goes beyond the superficial something happens, either my fault or not, that f*cks it up and there isn't a damn thing I can do about it except move on and accept it, and I am sick and tired of it. What makes the whole thing worse is that I never understand what the hell happened that f*cked things up so badly that they're beyond salvage. I either get told I'm "fatally flawed" and it's something global about me or it's not my fault it's "just never going to work" and it's something about the other person(s) but damned if I get it and damned if they're going to explain it and it's somehow bad if I persist in seeking an explanation...I'm supposed to either get it or accept without protest that I'm never going to... It's ALWAYS this way for me. I am beyond hope that I will ever be happy, job or no job, talents or no talents, because I am not the kind of person who can be content with "hey look at me I have success but I'm alone and nobody cares". Winning the PowerBall tomorrow and never having to work again wouldn't solve anything for me, except that it would allow me to leave my jackass husband right away instead of in a few months. But I'd still be alone either way. And though I might meet someone, a friend, a lover, a relative, who might be in my life for a week, a month, a year or a few, it will just get screwed up again and I'll be in this same situation again so why bother? Without the skills so many people have that allow them to form relationships that last, I am doomed to the perpetual loneliness that makes me feel like calling Kevorkian.

~Kate

''Sounds great in theory, but it depends on the severity of the AS.''



Though my social side may not be too much of a problem (although I do struggle sometimes), it's more the anxiety part. I get extreme anxiety - too extreme for words. When I get a job opportunity come up, I tend to back away because of major anxiety. I'm crying out for counselling, but after making lots of phonecalls, I still can't get referred to it because they don't seem to want to bother with me.

I know I can overcome the anxiety, but not in my own. I do need help. When I can get it.

I feel totally the same as you. I know that whatever success I do make in life, it won't last long for someone like me. Another thing: something up there (might be God) doesn't want me to have friends. I've found this out since the day I started school right to this day. Every time I had a friend, something went wrong and the friendship had to be ended. If I made friends with someone who was too nice to turn horrible, there would be another way to end our friendship, like them selling up and moving house to somewhere far away or something, where I can't ever see them again. So it's like I'm not meant to have friends. This is what's worrying me about my future: Am I going to be getting bullied throughout my whole life? Am I going to get close to someone and then one day they turn round to me and say, ''I'm leaving my job and moving to the other side of the world''. Bound to happen. To me.

Everyone else on here seems to have at least one friend who's near and will never trn horrible or move house. Except me.

I think my anxiety is the main problem for me and creates lot of roadblocks. Then next I would say learning difficulties and then my AS.

It seems that ppl underestimate the problems caused by the difficulty in relationships that are created by the inability to "read" other people and give them what they want/need out of a relationship. That issue has gradually but undeniably crushed my will to live by depriving me of what I want most: the ability to have reciprocal, loving relationships with others. I really don't want to be here any more. I *have* to because I have obligations to my children, but I don't *want* to. I hate what my life has become. I hate myself. I wish I'd never been born. I don't care if I'm intelligent, talented, creative, a good person, kind-hearted, WTFE. None of it makes me happy. I used to think if I could get the career I wanted or the accomplishments I wanted or help other people's lives be better, I could somehow ignore this monster but it didn't work. I've done all of the above and I'm still miserable because everyone who gets to know me abandons me and no one sticks by me, and the best of them don't give a reason beyond "it's not your fault" or something about themselves, and the worst of them batter me verbally with insults and never shut up about what's wrong with me. I can only hope I inherited one of my father's cancer genes and all this will be over sooner rather than later.

~Kate

Well done! This is good to hear. I am sorry if I have caused undue offence.



Strangely enough, it's similar with me. I generally don't think about my AS much, but when my partner sank into alcoholism and I found myself struggling to cope with it all, I began to wonder what I was doing wrong. So actually, I can understand the appeal of blaming the AS. But sometimes it's just the scapegoat.



I don't know you, but I can believe this is true. I work with an aspie (he, like the rest of the office, have no idea about my condition) and he's about eight years younger than me. And I see what he's like, and I know I was pretty much the same when I was his age.



I don't know about that. A lot of people have anxieties, some of them quite bad. I'd be unwilling to bet there's no-one worse off than you in this regard. The AS probably doesn't help you to deal with them, but it's not really the cause of them. And in any case, that's not what I mean.

If you were a diabetic, you'd know there are risks in many activities that most people take for granted. Sugar is just one aspect of it - diabetics have to be careful about drinking alcohol, too, as their condition can do weird things to the effects of alcohol... not to mention the potentially lethal possibility of getting bladdered, passing out and not taking their insulin. Diabetics on harder drugs are especially prone to problems - I believe some drugs can hamper the effects of their medication.

But the point is - if a diabetic were to get drunk, miss their insulin shot and end up hospitalised as a result, would they be right to blame the diabetes? They know they have the condition, they know the risks of getting drunk - and if they choose to do so anyway, that's THEIR fault. Blaming their condition is shirking their own responsibility to look after themselves. Yeah, it's not fair they're diabetic. Yeah, they want to have a good time with their mates. But if they take the risk, they should accept the consequences.

You've got AS. So have I. Long ago I realised that I had to either get used to my condition or avoid situations where it would be a problem. I still do both of these things, and as a result most people think of me as "normal", if a little odd. Even with a self-confessed aspie in the room they don't make any connection. In times of stress, my condition becomes more obvious (something I wish my partner remembered more often) and my strategies don't work so well, so I try to avoid high stress situations.

You need to consider your anxieties, and not the AS. Have you looked into medication? Have you considered psychiatry? Have you looked at why you have these anxieties, and whether you can gradually do something to deal with them? We can change, but it takes effort and time.

You have a point there, but with Diabetis you can physically avoid drinking alcohol because of the threat. Most people know the threat and most sensible ones get scared of the threat and so know to just avoid it. But I can't avoid my anxiety and anger. It's there in my head, and it just comes at the spur of the moment, before I can stop it. And I do say to myself before I go out the front door each morning: ''I'm going to be calm today, and not get too worked up about unpredictable events, and most important I'm not going to get angry.'' But then when something comes along what makes me angry, I give people glares before I, myself, can even stop it. (I tend to glare horribly at people if they're in my way, or if I'm in their way, or if they've got a loud screaming kid near me). I just can't help it. I get a horrible knot in my stomach when I feel angry, and I can't get rid of the pain of it unless I glare at people to show them that I'm irritated.

I know all this anger building up inside is going to physically come blasting out sooner or later - which will result in me being carted off in white coats, and I DON'T want that happening to me, because I will loose all respect. I'm crying out for psychiatric (can't spell it) treatment, and CBT, but I've phoned up countless times and they don't seem to want to know. I've explained my needs, and they said they will get in touch in another 4 weeks, but when 4 weeks are up I don't hear nothing, so I've got to start all over again. I want help now, not next year. I would have medication, but I don't want them to cause me side effects, or cause me to keep me awake at night, because that'd be defeating the object.

The reason why I sleep well at night is because I am tired from all the anger, stress and anxiety I fight off in the day. I need help - but who? Where? When?

I don't like having asperger syndrome either. I hold myself accountable for the choices I make, but the condition is to blame for some things. It has crippled my life in a way that I can't undo, but rather find other ways to make life more enjoyable. Depersonalization is a huge issue for most of us. Maintaining social relationships feels overwhelming most of the time, and sometimes impossible.

A while back something happened to my mother in which she could have been hurt badly. She explained the story to me, in which case I told her I was sorry that it happened. It's hard to explain it in words what happened, but I felt nothing for my mother's situation. I love my mother. But I didn't feel anything toward her situation. I was so ashamed of myself. I could tell that it upset her that my response was basically to be a robot, but I couldn't feel anything. I tried to be consoling. The same thing happened a few months ago when she was telling me how she barely managed to keep her job when her company was doing a bunch of lay offs.

Would it be like that if I ever got married? Would I have that kind of connection issue with my child? I don't know, but it's a scary risk.

Overall, I'm a very inanimate individual, and with the exception of some friends I've had since childhood, I'm very non-verbal, almost mute with all people. Not to say I don't try to socialize, but I don't watch TV, and the only activities I enjoy are listening to music and playing guitar. Most people don't do those two things as intensely as I do though. When I'm not at work, I just try to spend time with someone. I drink a good bit, not excessively, and I smoke weed to ease my anxiety. I'm scared to death of my job because of the people I work with. I tough it out, but it's taking its toll. The dam that's holding back the water has been cracking for years.

Does AS make me unique? Maybe so. Does it do anything positive? No. If I were given the choice to be NT, I would take it. The complications of AS are very detrimental. It's such a cold, invisible thing. No one else sees what it does to you. It's very painful, and very quiet. If you could be killed slowly over the course of years, this would be it. It changes who you are as a person from the time you are born, even if you don't realize.

Many with AS say they wouldn't trade it. Which is fine. No one can say what is and isn't right for an individual. But none of us know what it's like to be NT. It's a task just to come to the words to begin to explain myself. And it's much easier with text because I can sit here and think about what I'm going to say. In the real world I don't have that option, and while I try to have spontaneous conversation...I wish I could tell you. I wish I could tell everyone. I want to feel like other people, talk like other people, and live like other people. The wall is huge though. It's taller than any skyscraper, and when I look left and right there is no visible end. I woke up in a world that I can't understand and didn't want to be a part of to begin with.

I've just always wanted to know what it's really like to be able to automatically know the right thing to say to people. I guess I will never know.

Actually, you can - but it takes time. The alternative isn't nice either. I was very short-tempered when I was young - not surprising, since I was easily confused, frequently bullied and most people didn't understand me. Before I was diagnosed, medical experts took out four milk teeth (in case my teeth were hurting? They could have asked) and my tonsils (no idea what the rational was behind that) and were still baffled.

I was subjected to a lot of emotional brainwashing - I have no idea what it would be officially called, but this is close enough - in which I was basically trained to feel guilty about my outbursts. This didn't really stop them - it just meant I'd explode under stress and then be upset about it for ages afterwards. Over time I grew better at not exploding, though really I just became able to tolerate higher levels of stress before I did. Ultimately I found the solution, and now I find it almost impossible to get angry at all. Irritated, yes, but it doesn't last. Instead it all gets directed inwards and I suffer bouts of depression.

You can certainly reduce your risk of anger outbursts. Identify what stresses you out, and avoid it wherever you can. Learn to recognise the signs that you're about to launch, and you can often cap it before it does - or at least direct it somewhere less destructive. At present your "fuse" (the time between the trigger point and the explosion) may be a matter of seconds, but over time you can extend that. A few minutes of fuse is much easier to cope with - and allows you time to get out of there and let things settle.



It is important to release the anger. If you want to know why, try boiling the kettle with a cork in the spout - but I don't recommend it! This is why boilers have pressure valves. If someone or something annoys you, swearing at them is perhaps not socially acceptable but it's a lot better than turning into the Incredible Hulk.



Medical treatment is often slow. You might want to start with your GP and have them arrange something - and then you should keep chasing it up.

And you spelt "psychiatric" entirely correctly.



Good luck with that!

Are you a professional phychiatric counsellor, because your advice is good.

And I have been to my GP 4 times in the past 8 months, and they have referred me to counselling, so I am on the list. The GP said that it'd take 6 to 8 weeks, but that was over 25 weeks ago, so last week I've phoned up once again. They left me on the phone waiting for ages, then transferred me to someone else. I told them that I have actually been waiting over a year since I first went to see the GP, and they didn't seem to care. They just said that I'm already on the list and so can't refere me again. Also, literally every 5 to 6 weeks I get a new GP because every doctor at my local surgery keep on leaving, plus they're all foreign, so each time I go up there I've got to get used to a new one.
And the other week I got a letter saying that they were going to write me off their case (even though I've been ringing up countless times in desperation), and my mum was angry with them too. (She suffers from a lot of anxiety too, even though she is NT).

I just wonder how other Aspies on these forums can say that they're in counselling, or had counselling and they got all the help they need, and here's me still waiting. I don't know if it's because I live in Britain (which is the country that has gone to pot), or if it's just the NHS thinking I'm not severe enough to need counselling.

That's where Aspies have it hard, because most employers, advisors, doctors, ect, always think Aspies are too ''normal'' or too ''able'' to need help and support - especially here in Britain. I think they're just looking for really stupid people - and Aspies aren't stupid, so that's why we're chewed out. Just because a lot of Aspies are intelligent, doesn't mean they've got no anxieties or low coping strategies, like I have.

That's entirely why I think AS sucks. If I had severe autism, or Down's Syndrome, or mental retardation, or young-age Dementia, or other forms of brain-damage, I probably would have got the help I need. But with AS, you come across as normal, yet you struggle at things. It's like you're caught in a trap. and you're too ''normal'' to have help, but you're too anxious/unconfident to cope with things by yourself without any help. Well, it is for me.

Life's hard.

But I like the way you put things Thom Fuleri

It says at the bottom of this site: "Aspergers is not a disease". It bloody well is! Its a degrading, p*ss take, the medical world should be hiding in fear from us. I for one would give them a bloody good hiding, one they would never forget.

I agree.

Technically, it isn't a disease. This would be a condition by which the normal state of being is impaired - such as infection. Aspergers isn't something that's happened to us but the way we're born - this IS our normal state of being, like it or not. There is no cure. It could potentially be prevented, but this would be bordering on eugenics, which is very unpopular.

The medical community likes to focus on the stuff they can actually do something about, and relegates Aspergers to the realm of psychology, even though it isn't a purely psychological condition. Psychology has a limited effect because of this. And matters are not helped by popular culture (people like to think having Aspergers means you're Sherlock Holmes or Rain Man - not a social misfit with an obsessive interest in electricity pylons, superheroes or Westlife, as some I've met have been) or incompetent/greedy "professionals" out to make a name for themselves with lies and bad science (Doctor Wakefield, I'm looking at you...).



This is very true. Downs Syndrome? Brilliant! Polio? Even better! You can put kids in wheelchairs on posters and they'll get instant sympathy. Even morbidly obese people can illicit sympathy when portrayed in the right way, usually with soft music playing in the background to tweak those heartstrings. Aspies come out as normal, a bit weird or downright antisocial; none of these have popular appeal. The likes of Daniel Tremmett are great - he's quite good looking, he's socially functional and he's intelligent - but are the media interested in him for his Aspergers or because he's a synaesthetic that can learn Icelandic in a week? Rain Man again...



Not in any qualified sense. I do, however, have over thirty years of experience with Aspergers and I've spent a good chunk of that studying how people in general work. No psychiatrist knows anywhere near as well as I do just how I think. I've been studying my own thought processes for about sixteen years. At least.



Welcome to the NHS. When New Labour came to power in 1997, they promised to cut waiting lists and reduce unemployment. They did both - by cheating. Waiting lists were cut by reducing how many people could be on them (even today, if you want an appointment with your GP you need to ring up that very morning, within the first hour or so of the surgery opening). Unemployment was even sneakier - after six months, you're no longer unemployed. You're a jobseeker. You also get moved onto the New Deal scheme, which I enjoyed twice, and which featureed such wonderful career options as the Environmental Taskforce, a "job" that no-one would willingly apply for.



Mothers are a very potent force. I'd never even have been diagnosed if my mother hadn't fought for me. Her constant battles got me into a special school (which was totally unsuitable, filled as it was with the mentally handicapped and thus much too slow a pace for my above-average brain) and from there into a private school in the next county. This was the place that made all the difference for me. I have no doubt that, had I gone through normal local schooling I would now be either dead or incarcerated.

I suspect your mother is fighting as hard as mine was, but perhaps in the wrong direction. I don't know if you're anywhere near St Albans - there is a place near there called Radlett, and there was a place there called Harper House (I think). I have no idea whether they still operate, but they dealt with Aspergers stuff when I was diagnosed and helped my mother a great deal in getting funding, advice, and so on. I would recommend looking into that.

You should also contact your local council. These can vary enormously in quality, but if your council is a good one they can be very helpful. You might have been better off with this earlier - it's much more effective with children, as they get more press interest and so they take more care with them - but they should still be of some use, however limited. If they don't help, your mother should put together all the facts of the case and let them know that she is doing so. The local paper is always interested in stories about How Our Council Is Failing Our Disabled Community. The threat alone should get some action going.

If you do have any history with the local schools and/or council with relation to your Aspergers, make a request under the Data Protection Act for your records. It'll take a while for them to be released (the limit is 40 calendar days) so do this nice and early. Aside from a nice (ahem) stroll down memory lane, they'll be very effective when making your case. It's harder to turn someone down when your own diagnosis is being quoted back at you.



I never had counselling. Actually, they tried that once at school, and after five minutes of needling questions from some psychiatrist woman I tore the room apart. Strangely, she never even jumped, and asked if I felt broken like the stuff in the room. I've never been able to hit people, even when I exploded, but there are times I still very much want to. Still, I was never taken to counselling with her again. It clearly wasn't productive!

My best counselling came from a lady called Susan Jeffers. I've never met her, but she wrote some self-help books and she's still going strong now. The basic message is summed up in the title - "feel the fear, and do it anyway". I really took this to heart. I was frightened of everything because I understood nothing, so I started (bit by bit) to take a bit of risk, and to do stuff that scared me. I started to eat food I'd never liked the look/taste of before. I slowly got more used to being touched. I bought my first pair of jeans as a young teenager (that sounds so silly, but I really *hated* tight clothing before that). It was a slightly scary jump to even switch from Y-fronts to boxers - something I'd wanted to do for ages. I bought my first mobile phone at 21, and that was a *weird* feeling, though not quite as weird as the sofas. Relationships? Baffling, and terrifying. I couldn't crack that one for ages, and they still didn't make sense to me.

It's late, I'm rambling and I ought to go to bed. So I'll try to sum up:
(1) Your mother is your first and foremost ally, but she needs to fight the right targets.
(2) You'll get bugger all out of the NHS. Unless you want to go private, go to the council instead.
(3) Look into Harper House - and there might be equivalents around.
(4) Anger comes from confusion and fear, because we have no control. But control is an illusion anyway.

If you want advice on Data Protection stuff, send me a message. I know more about it than I'd like! And I'd like to know where in the UK you are. It might even be somewhere I've been!

forgot what i was going to put