Confused Traveller

I've been waiting seven months for my appointment, and think I probably have several more months to wait. I really hope they don't give me just two weeks notice, as I want to go on holiday about the time it will be due, and last year I was away for six weeks and came back to find I'd missed a hospital appointment I didn't even know was being organised! I can't stand another 10 months wait if I have to go back to the beginning of the list because I miss it. All my family died of old age long ago, except two half brothers who are around 80, and the only friend I had from when I was young died 10 years ago. So they won't be getting much in the way of witnesses who knew me as a child. But if the NHS don't spot these things and put you on the waiting list until you're nearly 60, I hope they make allowances for that.

Whenever I read about an Aspie being married, I wonder "how did they manage that?" I have never been able to read whatever signals people send out to attract the opposite sex, and I assume I haven't sent them either. Despite getting on with women pretty well (I think), and always wanting a partner, it hasn't happened in over 40 years. For most of that time I put it down to bad luck, and just not happening to come across "Miss Right". Pretty much all my relationships of all sorts with people have been pretty superficial, and don't survive changing jobs, moving house or other changes where we lose regular contact. If someone had told me decades ago that something wasn't functioning as it should, maybe I could have done something about it, but apart from some depression I never realised there was anything "wrong". I went through a few years of starting to get closer to a few women, but never got very far. If I'd known what I think I know now, I could at least have said that I don't seem to send or receive signals. That would probably freak out a lot of women, but maybe occasionally one may have said she'd noticed something odd, suggested we work on it, and just maybe something may have happened. I've also got stuck in a difficult situation, that has had a big impact on my life and my financial security, that I got into because I didn't realise I have a problem communicating/connecting with people, and handling difficult people related situations. I'd just had my mid life crisis, had various counselling etc., and thought I was making good progress in overcoming what had been holding me back for so many years, and that I could handle it. But I was wrong, and nothing in me had changed. It was my life that had changed, and that fooled me into thinking I was different. My point in writing this is that I don't think it's professional/health care type of support I actually need, so if none is forthcoming if/when I'm finally diagnosed (I'm about 7 months into a supposedly 10 month wait) I don't think it would be a big problem for me. Although it would be useful. I need an answer to what's wrong/different about me, and getting a diagnosis would finally be an answer 10 years after my mid life crisis started things off (and a 60th birthday present from the NHS!). I can stop looking for the answer, accept that things have happened in my past because I was unaware of it, and maybe make some big decisions that I currently can't make with incomplete information. Then I need some practical help with stuff like sorting out paperwork and finances, deciding how to make a living, and matters revolving around planning permission, building and architecture, that I don't see spending an hour a week with a counsellor, or having a care worker, would be any use with. This would take so much pressure off me, and simplify my life so much, that maybe I could handle the people/relationship stuff much better. The time when I started to make a little progress with relationships was when I went travelling and life was simple, but I was missing the vital bit of information about me that a diagnosis will hopefully give me, so with maybe a bit of support in this area I might finally get somewhere. I'm not suggesting this will solve your problems, but maybe your solutions don't depend on support, or lack of it, from the health care system, but now that you know you have Aspergers, and how that makes you think and act differently to most people, you can look at situations and understand how you see/do things differently to other people, and try to act accordingly. You said you've been going about it the wrong way up to now, so maybe now you've got this new and very big bit of information about yourself, you can work out how to go about things the right way. I don't know if that helps, or if anyone has thought the same way but found that it doesn't work, as that's something I'd like to know too.

It's not necessarily the length of the wait for a diagnosis, although that's bad enough. It's the total lack of communication during the wait. No updates on how much longer it will be, and no one checking how you're doing or if you need any help while you're waiting. Someone chased them up on my behalf weeks ago, but I've heard absolutely nothing. Even if I hadn't had any mental health problems at the beginning of the wait, I'll have some by the time it eventually happens!

I think some people see me as weak, but I have a feeling that if I wasn't so strong I wouldn't have been able to keep going for so long, and would have fallen apart long ago. I remember thinking 30-40 years ago that I wish things would totally fall apart, so someone would notice, and help me, but it never happened. So I'm not sure that being strong is always a good thing.

Late 50s seems rather early to me, as mine will be just before my 60th birthday, or maybe even on it! I've been aware of something not being right all my life, but never associated it with being born different. I put it down to a mix of having older parents and no one my age in the extended family I could relate to, plus some bad luck in not happening to meet the right people to have relationships or become close friends with. I experienced a little bullying at school, but never any at work. It was after my mid life crisis when I was 50 that things started to change. I suddenly became able to talk about stuff I'd never been able to talk about before, saw various counsellors, started meeting different people and learned about different things and new ideas. Thinking my past was behind me and I was making good progress, I started to do new things I was confident I could handle. That eventually led to me getting into a situation that has cost me a huge amount of money, and left me very isolated with no useful support, and I don't know how to get out of it. I now realise, or think I do, that thinking differently, not being good at reading people or communicating with them, and not being good at handling difficult situations, is what got me into this situation. I made the decision to go ahead with this based on what turned out to be incomplete information. Some of it appears to have been due to lies and incompetence by people I was dealing with, but I think a big part is having absolutely no awareness that I may have Aspergers. If I'd known that, I hope I'd still have taken the same course, but that I would have done things differently, and not got into this mess. I think I went from a safe life that I had adapted to fairly well, to one that has pushed me beyond my ability to cope. Maybe if I'd stayed in my old life, I'd never have discovered Aspergers, and just have gone on forever being a bit depressed and sad that I'd missed out on some of the important things in life that most people experience that I haven't. Or maybe I wouldn't, as looking back on my life, I think I can see a gradual decline in my ability to cope with life that's been going on for many years. So maybe as I start to head into old age, things would have started to fall apart anyway. That's why I think a diagnosis is so important. I know jobs and money are a big issue, but knowing a long time ago could have helped me to make big decisions that improved my life, rather than ones that got me into a mess. My diagnosis is important partly as I think it's a vital piece of information that I need to help me decide how to sort out the current mess. Maybe it's the one fact that will help me accept that the only solution is to walk away from it and accept a huge financial loss that harms my future security. Or maybe it will help me find the right support to help resolve it. So I'm pretty much sitting here waiting for my appointment, to obtain a vital piece of data I can't move on without.

I'm not sure that not bothering with an assessment if you're over 40 is a good idea. If you've managed that long without one it doesn't mean that it's not gradually grinding you down, and it will start having more serious effects as you get older. I've been self-employed for years, so don't have the employers problem, but it's only through discovering my potential Aspergers that I'm realising why I haven't been able to work and earn any money for a long time, and that I made some big life changing decisions that have gone wrong, I think, because I wasn't aware that I think differently, and don't read people as well as I thought I did. If I'd known about Aspergers when I was in my early 40s, I hope I'd have done things differently since then, as I'm pretty convinced I wouldn't be stuck in the situation I'm in now if I'd known.

I'm 7 months into what is supposed to be a 10 month wait for a diagnosis. I'm assuming they're good at doing the actual diagnosis, but they don't seem to have a clue about the effect that waiting for it without any communication or support has. They were asked some weeks ago for an idea of when it would happen, but I've heard nothing.

https://www.thephone.coop I think they're cheaper than BT too. They were when I changed to them. I think it's worth changing to some of the small utility providers, as they are much more human/humane, so should be easier to deal with if you struggle with phones and the attitudes of big organisations. People like Ecotricity for electricity and gas for example. They tend to get top ratings for customer service, as well as being more ethical.

I use The Phone Co-op, and on the few occasions I've had to talk to them, I've spoken to real humans beings who are helpful. They act as a buffer between the customer and BT/OpenReach too, so can take a lot of stress out of dealing with problems. They're not perfect, but I wouldn't go back to one of the big companies now I've escaped from them.

I had the last session with mine a couple of days after I'd done an online test. I told him about it, and he said he didn't know anything about Aspergers, so couldn't comment either way, but didn't disagree with me. I get the impression that a lot of people who claim to know about it don't have a clue, and that many people are experts in their own field, but know nothing about anything outside their experience, so either you've got what they know about or there's nothing wrong with you.

You think 34 is late? I'm 59, and stuck with what I was told is a 10 month wait for a diagnosis, although I haven't got a date, and have so far had no reply to my request for a rough idea of when it will be.

Just in case it turns out that my German Shepherd can read, I daren't say anything other than dog!!

I think I read that it's possible to get a 90% accurate diagnosis with an MRI scan, but it seems that the only way it's actually diagnosed is through a box ticking exercise and the opinion of a psychologist. It seems to be the system that causes the associated mental health problems, and the system that makes ASD a mental health issue! I've still got several months to go before I get my diagnosis, or not!

Sorry I can't spare my copy, as it's so useful at the moment, but just thought I'd say I found it well worth reading.

I asked the question here the other day about whether I should should tell my half brothers, who are 20 plus years older than me. For one, it may explain why he's always felt like the odd one out in the family (I'm sure he's NT). For the other, it's more because I don't reply to his calls, and I ought to, but don't know what to say to him. It's hard to not give a reason, but if I just say I don't feel up to it, that could lead to more pressure on me, or unfair worry for him.

For what? If you're asking about an ASD diagnosis, the waiting list I'm on is apparently 10 months.

I rarely keep in contact with anyone when I move from one situation to another. Whenever I changed school or job, move house, leave a group I've been a part of, or lose touch with people for almost any reason, my connection with everyone involved just fades away. I seem to have no ability to maintain most connections beyond a superficial level. I lost touch with all my school friends, who were never more than acquaintances, when I left, so I was never going to stay in touch with teachers who I was even less connected to.

I often wonder if I'm in the right place when I read the problems that a lot of the people who post here have. I've had a pretty "normal" life in most ways for decades, with some depression, stress and anxiety, so I suppose the Autistic Spectrum is so wide that it goes right from people with major problems who can barely function, to those who can get by but whose life could have been a bit better without it. Those of us who get to our 50s before even having the slightest clue we may have it, are obviously at the milder end, or we'd have fallen apart long ago. In my case, I think I have one significant problem I was aware of in a way, but that I've never understood the reason for, and I'm starting to think there may be issues I've never been aware of that others may have noticed, but never told me about.

I'm absolutely nothing like Phil, apart from possible/probable ASD, and my situation is totally different, but it's a question I've been pondering. When I was little, there was absolutely no one in my entire extended family who was my age. My Dad was 53 when I was born, and Mum 40, and Mum was the youngest and Dad third youngest, in large families. My cousins were 10, 20 or more years older, and I didn't have any second cousins until I was about 10 (apart from one who's just a few years older, who I only met briefly a few times, at times when that was a big age difference). So pretty much all my early influences were from people in middle age, or heading towards old age. I don't remember anything relevant from this time, but this was long before playgroups, mother and toddler stuff etc., so I doubt I mixed with anyone my own age much, if at all, until I started school. When I was old enough to go out on my own, I was pretty much free to go anywhere, do anything, or meet anyone I wanted (it was the 60s!!!), but it came with a warning to be careful and keep a little apart from anyone I met, as we were more decent and respectable than most people. So I was always on the edges of anything I got involved in, sort of on the outside looking in, rather than being fully part of it. Then, after more than five decades of the influence of this, as it's always kept me at least a little apart from people, I discover I might have Aspergers. If I have Aspergers, I'm sure I can see signs of it in other family members, so was much of this upbringing due to the influence of other Aspies, or was it non Aspergers related Victorian/Edwardian values, being imposed on someone being brought up by parents old enough to be my grandparents, when others my age were being brought up by people a generation ahead of me? If I have Aspergers, maybe it's why I didn't rebel against the way I was brought up, because it's the way I'd have naturally acted anyway. I think this is partly why the wait for a diagnosis is getting to me, because I tick a lot of the ASD boxes, but it could all be learned behaviour from my childhood. Or it may be ASD, but my early history may prevent it being officially recognised, and then what do I do?

I'm wondering that too. I've been on the waiting list since December, and have heard nothing since I had a brief chat on the phone with the people who do the diagnosis in January. Not knowing adds to the stress of waiting.

I don't think I would Mike, as I can organise the types of holiday I like myself. I do miss out on things that I'd like to do when I'm away, as I get rather anxious about them, and I often think of things I could have done when it's too late, but I'm not sure they are things that someone could organise for me. I really commented to make the point about simplicity and avoiding stress. I had thought of being away at the moment, but it seemed too complicated to get organised, so I didn't go, but it was things like getting my van ready, and what to do about a meeting I needed to go to, that no one else could really help with as part of a service. That's stuff about not having people in my life who I'm close too.

I've never been on a complicated holiday, where booking through travel agents, organising documents and going to busy places like airports are involved. I've just phoned a B&B or a camp site, and since having a motorhome book sites online when I have internet access. I've always been able to drive wherever I'm going that makes it easier too. I don't think I struggle with these things anywhere near as much as many do, but would still find doing much more than this quite stressful. I don't see the point in making complicated arrangements and travelling in stressful ways, as it defeats the object of having a holiday! The farthest "abroad" I've been on holiday is Scotland, including going "overseas" to Skye(!), although I have since emigrated from England to Wales!!!! So simple arrangements, and simple stress free places to go, is what I look for. And being dog friendly, as I won't go alone!

Thanks for trying Mihaela. I'd like to have read the rest of what you wrote, as I'm sure it would be helpful, but the important thing is some help with which option to choose, or suggestions of other options, and you've done that. I can well understand your need to know, but I can't understand why you have to wait so long. I thought a 10 month wait was rather shorter than many people have to endure. I have no interest in the party political system, except from a philosophical or psychological point of view. I see it as an expression of neurotypical and psychopathic power struggles My only interest is in being aware of, and trying to understand, what they're doing to screw up the planet and the lives of the rest of us, and trying to find ways round it. This is flagrant discrimination against cats! Didn't you know that cats are furry Aspies, and are the thinking person's dogs? Although I'm always petting cute dogs (and would like one again) cats have an elegance and aesthetic appeal that dogs generally lack 30kg of bouncy German Shepherd wins over a fluffy kitten any day . She can be very empathetic at times, seems to read people and dogs better than me, and doesn't chase cats unless they're on her land! She likes to eat what neighbours cats deposit on my land though ! Regarding my big project, people love the idea, but I haven't been able to get anyone to make the serious commitment needed to get involved and help make it happen. I think this comes from being able to think differently and come up with new solutions, but not being able to communicate it well enough to really engage people. I put out a call to action for someone who's a good communicator and people person, but it appears that I need to be good with people and communicating to be able to find them! So at the moment, the last 10 years has been a failure, which has a serious effect on me, as I'm stuck with having spent a lot of money on a house and land to use for a pilot project that has gone wrong, and I'm stuck with. So I can't just walk away from it, as my future depends on resolving problems I've been gradually realising I can't deal with on my own. Getting deeper into this has run in parallel with gradually discovering things about myself that if I'd known before I started would have led to me either not starting, or doing things differently. I suppose it's been my special interest for a long time. Anyway, I'm trying to catch up the lost years of my earlier special interest at the moment as a coping/avoidance strategy, but building model railways won't save the planet!

I'm 6 months into a supposedly 10 month wait for a diagnosis. I feel I need to know either way to help me make decisions about important things in my life. A couple of months ago, I decided I needed to put a project that has taken over my life for the last 6-10 years on hold until I know, and that I wasn't up to restarting the business I had until some years ago at the moment. Then I pretty much switched off for what I thought would be a couple of weeks, but is still going on. A lot of my connection with the outside world has been through Facebook. Cute cat pictures, friends' game scores and mindless gossip are banned in my Facebook world, as it's my main source of news and discussion on the serious stuff going on in the world, since I gave up on the mainstream media. Most of my friends are involved in climate change, environment, politics and other serious stuff. Cute dog pictures are OK though, as I post them!! I also run groups and pages for my big project, and am an admin for other groups. So switching off from it for a couple of months is no doubt leading to some problems, and blowing my credibility. I keep looking at the Facebook bookmark in my browser and wondering if I should click on it, but I can't face it yet. Another concern I have is with what's left of my family. The only close family who are still alive are my two half brothers who are around 20 years older than me (and their adult children), so are around 80. I've hardly spoken to them since I moved to Wales over 5 years ago, and often don't reply to phone calls. The stuff that's happened since I've lived here has been stressful, and I don't have the energy to keep in regular contact. One of them got the police to come round a few weeks ago to see if I was OK. I really ought to get in touch, and tell them something about what's going on. So what do I say, or do? - I could just stay in hiding, but that's building up problems that could make things harder in the future. - I could just say I'm on an NHS waiting list without giving details, and finding the wait stressful, but I'd probably be pressed to say more, or people will think it's something life threatening, and maybe overreact. - I could say exactly what's going on, and how it could explain why I have been able to come up with original ideas to help people and make the world a better place, but haven't been able to make them work. And that it explains things I've struggled with all my life. But until I get a diagnosis I won't be sure. I prefer the last option, but would rather wait until I'm certain, than do it now. Once I'm sure, I think I'll be happy to "come out" and tell the world the benefits of being an Aspie, but how in return for giving those benefits to the world, we need some help to deal with the stuff we find difficult. I may well have Facebook friends who will be supportive. It wouldn't surprise me if someone says it was obvious to them, and they assumed I already knew so hadn't said anything. But it might put people off who follow me because of my big project. I don't know how my half brothers would react. I can see possible mild signs in one of them, but if there is Aspergers in the family, I'm sure the other one is NT. He's often commented on how he's the black sheep of the family, and in more recent years has told me that he thinks there's something odd about the family. He's quite angry about lack of support with his disabled son, and I can relate some of that to how I've read Aspies handle certain situations. At around 80, does telling them give them peace of mind that something odd may have an explanation, or freak them out? If I tell Facebook but not them, word may get to them as my niece and nephew are friends (although I don't know what they see of my posts, as I block their posts due to clogging up my newsfeed with game scores!). Any suggestions?

Aspies make up about 1% of the population, and many of the great discoveries and inventions that have shaped the world that NTs live in may have come from people with Aspergers. Psychopaths/Sociopaths make up about 4% of the population, and manipulate a huge percentage of it to their own advantage, regardless of the consequences. It's a shame that life for a minority that can have such a positive influence in the world is harmed by another minority who are only interested in using everyone for their personal gain. If the majority actually saw how they are being manipulated, maybe their attitude would eventually change. That doesn't help Aspies, and others who are badly treated, right now, but maybe it can help to develop a more positive attitude that might lead to things improving in time. And a more positive attitude may help to relieve the stress and anxiety now. Waiting for a diagnosis isn't doing a lot for my wellbeing at the moment, but I have a feeling of anticipation that I may be part of a something special, rather than a fear of being told I have a debilitating disorder. The longer the wait goes on, the more I realise that it's a large part of the other 99% who have that!