suz Report post Posted February 14, 2009 Hi, I'm suz, I'm 24 and I'm new to this forum. I've joined because I think I may have asperger's and would really appreciate any advice or support people can give me. I've been under mental health services since I was 18, and have suffered from depression and anxiety for many years. The team have helped me in some ways but I find things very difficult because I've never been able to explain what things I think I really struggle with. As a child I was very much a loner - I've never reallly known how to make friends or socialize with other people. My Mum, who I still live with, has always said there was more to it than what people have understood, and took me to the doctor's a lot when I was young trying to get me help, but no-one would listen. I was so frightened as a child because I've never really understood the world or the way it works. I know that probably sounds strange but I've always preferred to live in my own little world - I feel safer there. There are lots and lots of things I am still finding hard now, I don't find it easy looking after myself but I'm scared I'll still be living with my Mum when I'm 30! My Mum is 60 now and she's finding things hard now too. I've looked into things a bit and there are no services in my area for adults with autism at all. I'm starting to get desperate and really don't know what to do. I feel quite lonely. If anyone has any advice or knows of anywhere I can go for support or anything I'd really appreciate it. Thanks... Suz Quote Share this post Link to post Share on other sites
lbj Report post Posted February 14, 2009 My half-brother has been under mental health services since he was about 14 (he's 21 now). He was on all sorts of anti-depressants and anti-psychotics (which never seemed to help much) until his liver started packing up about a year ago and they were all withdrawn at which point his mental condition actually improved overall. Around the same time my son was diagnosed (at the age of 3) with an ASD and me, my mum and my half-brother all realised independently that he's probably had Aspergers all along. He has now been referred to see a local ASD specialist though I don't know how long he will wait or how helpful it will be. He still lives with my mother who is over 60, he's not yet managed to complete his education (I think he may have fitted in a few GCSEs somewhere but I'm not sure) and he's only ever managed to do a few hours voluntary work here and there. He has his ups and his downs but I think he's happier lately than he has been for a long time maybe thinking in terms of Aspergers helps him to make sense of his experiences (we're not exactly close, you may have noticed!). I just wanted to tell you that you're not alone, seems you're in a similar place to him probably plenty of other people and hopefully one day all adults seeking a diagnosis will be able to be seen, diagnosed and helped. janine Quote Share this post Link to post Share on other sites
suz Report post Posted February 14, 2009 Hi, thanks Janine, it's good to know I'm not alone. I got a few qualifications before I left school but have never been able to do anything with them, I was also doing voluntary work last year but had to give it up because I was finding it hard to cope. I've been on all sorts of medications but they've never really done much good to be honest. Anyway thanks for replying, I hope things with your half-brother get sorted out soon. Suz Quote Share this post Link to post Share on other sites
nellie Report post Posted February 14, 2009 Hi Suz, Welcome to the forum. I have a son of 28, he suffered depression for some years, he had a late daignosis of AS at 23. He's now 28 and has had long periods of unemployment. At the moment he's working two days a week and still living at home. I help run an ASD Family support group in Berkshire. Feel free to PM me if you want any information or just want to chat. This is a great forum, hope you stick around. <'> Nellie xx Quote Share this post Link to post Share on other sites
suz Report post Posted February 14, 2009 Hi nellie, thanks for replying. I wasn't aware there were any support groups in Berkshire which is where I live. That's good to know. I'm hoping that I will be able to get a diagnosis although we will probably have to go private, I do think it would help me to know what the real problems are though. Any other advice you could give would be much appreciated. How do you and your son manage? Is there any support around for him in Berkshire? Suz Quote Share this post Link to post Share on other sites
nellie Report post Posted February 14, 2009 (edited) Hi Suz, I have sent you a PM. I have two sons, the eldest is 30, he was diagnosed with autism at 19. He has been living in an ASD specialist placement out of county for 10 years. Apart from the odd blip, he leads a good life and gets the support he needs. My younger son is much happier now that he understands his problems, he's lucky to have a group of friends that he met at school. Home life is very good. My husband was diagnosed with AS in his mid 50's. Nellie xx Edited February 14, 2009 by nellie Quote Share this post Link to post Share on other sites
TheNeil Report post Posted February 14, 2009 Hi Suz, I was dx'd with AS nearly three years ago (I'm 34 now) and, like you, I've suffered from depression on and off or pretty much as long as I can remember (and I opted for a private dx too). I left home about 12 years ago (I now live on my own) and while some days are damn hard, I know that some people can manage it...can take a lot of 'trial and error' though. There are various things you can do and try that might help and I'm more than happy to share if you want to know more - just ask and I'm sure everyone here will shower you with advice, opinions and suggestions. Whether a diagnosis will help or not is debatable (I, personally, feel thatr it's better 'to know') - some people find that it helps, some find that it throws their entire world into confusion. A dx can answer a lot of questions...but also raise a whole lot of new ones. As to whether it helps with the services that are available...well that seems to be something of a 'gray area'. Here in North Yorkshire it seems to make no difference whatsoever (they were useless before and they're still useless now) but I know that not everywhere is as 'backwards'. Already you've found out about a support group where you live . As for feeling lonely, well there's a great set of people on here, parents of ASD kids, parents of ASD kids who are also ASD, adults with ASDs etc. and we're always willing to lend an ear, offer advice or just have a laugh and, hopefully, put a smile on people's faces. You're certainly not alone and, rest assured, there's a lot of good people here who not only understand what you're saying, but have been there too and come out the other side. So, ask away and grill us for answers. Oh, and welcome to the forum Quote Share this post Link to post Share on other sites
suz Report post Posted February 15, 2009 Hi Suz, I was dx'd with AS nearly three years ago (I'm 34 now) and, like you, I've suffered from depression on and off or pretty much as long as I can remember (and I opted for a private dx too). I left home about 12 years ago (I now live on my own) and while some days are damn hard, I know that some people can manage it...can take a lot of 'trial and error' though. There are various things you can do and try that might help and I'm more than happy to share if you want to know more - just ask and I'm sure everyone here will shower you with advice, opinions and suggestions. Whether a diagnosis will help or not is debatable (I, personally, feel thatr it's better 'to know') - some people find that it helps, some find that it throws their entire world into confusion. A dx can answer a lot of questions...but also raise a whole lot of new ones. As to whether it helps with the services that are available...well that seems to be something of a 'gray area'. Here in North Yorkshire it seems to make no difference whatsoever (they were useless before and they're still useless now) but I know that not everywhere is as 'backwards'. Already you've found out about a support group where you live . As for feeling lonely, well there's a great set of people on here, parents of ASD kids, parents of ASD kids who are also ASD, adults with ASDs etc. and we're always willing to lend an ear, offer advice or just have a laugh and, hopefully, put a smile on people's faces. You're certainly not alone and, rest assured, there's a lot of good people here who not only understand what you're saying, but have been there too and come out the other side. So, ask away and grill us for answers. Oh, and welcome to the forum... Hi TheNeil... It sounds like you manage really well, even without much support. Good for you! I agree that getting a dx could be both good and bad - my Mum is very keen but I'm not so sure, it kind of feels like it would be another problem on top of the ones I've got already. I guess it's a case of whether or not I'm going to find it helpful. It would be good in some ways to 'know' what the problem really is I suppose. I certainly don't feel as alone as I did, it's so helpful to know there are other people who know what it's like. Thanks for the advice and support... any other wisdom you could share would be much appreciated! Suz Quote Share this post Link to post Share on other sites
TheNeil Report post Posted February 15, 2009 Thanks for the advice and support... any other wisdom you could share would be much appreciated! Nope, that was pretty much the sum total of my 34 years on this planet Seriously, anything you want to ask, no matter how 'stupid', 'trivial' or whatever it may seem or sound, just ask - a lot of things that many people outside the ASD world 'take for granted' are anything but. Quote Share this post Link to post Share on other sites
suz Report post Posted February 15, 2009 Hi The Neil - a lot of things that many people outside the ASD world 'take for granted' are anything but. It's funny, I can totally relate to that!!! Nice to know I'm not the only one who is always the last to catch on (no offence!!) Thanks for your other post in intros by the way... will reply to it v soon... Suz Quote Share this post Link to post Share on other sites
Tally Report post Posted February 16, 2009 Hi Suz, and welcome to the forum. I am 27. I was diagnosed with AS 2 years ago. I simply could not get assessed on the NHS and eventually went private. I was already being treated for depression, and the diagnosis helped to make sense of the parts which didn't fit that diagnosis, and the bits which might have fitted that diagnosis but didn't improve with treatment. It also helped me to feel better about the things I struggled with, and understand that there is a reason for them, whereas before I felt like they were down to some kind of character flaw or lack of effort on my part. I am now seeing a counsellor who has a lot of experience of AS, who has helped me a lot with things by going about it a different way in light of my diagnosis of AS. I've been lucky to find this counsellor, but she has been very helpful to me and I am doing a LOT better as a result. The diagnosis has also enabled me to do a lot of things for myself. There is no AS-specific, formal support available to me, but meeting with other autistic adults (in real life and through the internet) has helped me to find different approaches to things I couldn't do before. Simply finding other people like myself has been extremely empowering. You can still do these things whether you have a formal diagnosis or not, and some people have some AS traits but do not meet the full criteria for diagnosis, and those people may also benefit from picking certain strategies which work for them. If you are considering going for a diagnosis, it might help if you write down a clear list of symptoms. It can often be easier to write things down than try to talk about them. As your mother seems supportive, it might also help if she can write a similar list of the things she sees you struggling with now and throughout childhood. Some diagnosticians will want to speak to a parent about your early childhood development, as they need to know that this is a lifelong condition. I tend to agree with your mum - that a diagnosis could be helpful. It won't lead to additional problems, as you clearly already have these problems. A diagnosis can lead to a clearer understanding of what the problems are and how to resolve some of them. You have to do it in your own time though. It is not unusual for adults to still live with their parents into their 20s. When I first moved out I was a lodger, renting a room. This was a good first step toward independence because I had to pay my way and make my own meals, but didn't have to worry about all the household issues. The other thing to bear in mind is that we tend to grow up much more slowly. ALthough you are 24 now, it may be that you still lack some of the skills that you would need to live independently. I certainly felt very much younger than my peers until recently. Partly, I think this is because we often learn things differently to 'normal' people, and without AS-specific support, it is bound to take us much longer to pick up the things that other people just seem to learn innately. This does not mean that you can't ever learn though! ANyway, it's nice to meet you. I hope you will like it here. We are all a bit mad here Quote Share this post Link to post Share on other sites
suz Report post Posted February 16, 2009 Hi Tally Thank you for your post, I found it very interesting and helpful. I can very much relate to the fact that there are bits of 'me' that don't seem to fit with the diagnoses I've been given so far, and whilst I have benefited from some of the treatments I've been given, a lot of things still remain a problem. I agree it's very easy to kind-of feel like it's your own fault, like you're just not trying hard enough when you know that actually you're doing the very best you can. In that sense I can see why getting a diagnosis could be a very good thing. I think it's great that you have found such a good counsellor - like you there aren't really any services where I live for adults with autism, although nellie has told me she runs a support group locally which sounds like it could be very helpful. Thank you for the suggestion about writing a list of symptoms. I have always found it much easier to express myself on paper rather than in person and I think this is a great idea. I did actually move out of home into supported housing when I was just 19, it was a project for young people with various different issues. It did me far more harm than good though - the little bit of support I got just didn't seem to help, and I really struggled to look after myself and stuff. The project housed a lot of young people with drug and alcohol issues and to be honest I found it a very very frightening place to live. I was also very easily influenced if you know what I mean, which made matters 1000 times worse!! I moved back in with my Mum a year later and as frustrating as I find it sometimes I know this is where I need to be at the moment. I can also totally relate to the 'growing up much more slowly' theory. It's weird, as a child I was incredibly mature for my age and much preferred adult conversation to childish play. Since my mid-teens I seem to have sort-of gone backwards!! - I now feel much less mature than my peers, and there are a lot of things that they do that I just can't. Anyway, thank you for sharing, I hope you don't mind me doing the same. It really is good to know I'm not the only one who struggles with these sort of things... Suz Quote Share this post Link to post Share on other sites
something_different Report post Posted February 16, 2009 hello no advise sorry just wanted to say hi and welcome Quote Share this post Link to post Share on other sites
suz Report post Posted February 16, 2009 Hi something different... nice to meet you! Suz Quote Share this post Link to post Share on other sites
DazedandConfused Report post Posted March 31, 2009 Hiya, Don't know if this'll help, but I was in a similar sounding position as you in my 20's. I'd flunked school with a very unimpressive sounding collection of low-grade CSEs and had had a miserable time due to not fitting in. I put in a lot of effort to fit in but that just made it worse and led to five years of bullying. After leaving, I got a job soldering circuit boards which fitted surprisingly well as I quite enjoyed the repetitive nature of it. Like you say, loneliness leads to depression and relationships were generally disastrous because one person could say something and mean the opposite and another could say the same thing and mean it, but I was clueless so it was always doomed and I ended up bitterly frustrated. The change came when I finally decided "sod the lot of them" and went my own way. I had a motorbike and was, at that time obssessively immersed in all things two wheeled. I stumbled across a charity that relied on bikers providing voluntary time so I signed up. All of a sudden I went from manically obsessive loner who won't stop going on about bikes to valuable member of a group and was treated as an equal for the first time. If people had a bike problem,give to the Aspie (didn't know that at the time) and it'll be fixed in no time. My OCD which manifested itself as a need to practically kick a door off its hinges before believing it was locked disappeared and I just sat back and watched the people around me, learning how they interact. It's a lot easier to work out what's going on from the inside. and made day to day interactions easier. I still won't go out of my way to fit in with other people and work with computers 'cos I feel like I understand them and they do what they're told (most of the time). My one regret was trying to fit in so hard as it only seemed to make things worse. Two of the best things in my life were finding a way to do what I enjoyed while being around other people who respected the knowledge and didn't treat me like a freak, and actually finding out about Aspergers and the fact that I had it. It makes you realise that you're not alone and there are others like you. Whether this helps or not I don't know as I don't know you but although I still have dark times, but I'm a lot happier than I was. Good Luck, J Quote Share this post Link to post Share on other sites
