darkshine

Hey Tally, Yes, it is very frustrating, I am angry for myself (when I can care about me enough) and I am also angry for other people here using this service: I know of a couple of other people who have been given "umbrella" terms for their problems and then told that the service doesn't deal with those problems. This is scary because it makes me wonder if it is a strategy to get people 'off the books' so to speak, and this would be very dangerous! Also because I believe that if people want to improve themselves then someone should help them do it and not just write them off as a disorder that "can't achieve things" which blatantly isn't true! I am worried that if I go to an advocate it will turn into a fight - I have no experience of doing this kind of thing but I also don't just want to give up and in a way - let them win. Am I just stupid or something when I believe this is all so wrong? The pain I have felt for so many years should not be ok, nobody else should have to feel it, why don't these people help? Saying that, I suppose they could surprise me and say they can help (I'm just not hopeful when they explicitly said to mine and my carers face that they didn't think it would be likely). I have found the nearest ASD service, it is 30 miles away and until I deal with my problems with travel I really can't get there - and I don't think my issues necessarily warrant support from an autism specific service - though I don't know for sure....

Thanks Charlotte, I've just looked at both of these and unless I've got it very wrong: Autscape is in Pontefract this year and The Autism Show is in London? Unfortunately they are both a minimum of 150 miles away from where I live... I would be interested but just cannot get that far (to be honest 5 miles is about my limit), I have no car, no friends with cars, I completely "meltdown" on public transport that goes further than a few miles, and to top it all have no cash for transport anyway. It really makes me feel very trapped, very isolated, very lost and very disheartened. On a separate note to everyone who reads this: I am adding some more info as I maybe haven't been clear for those of you who haven't read my other posts Who I am seeing The appointment I just had was with my care-coordinator and a person I see who was helping me go out once a week. This person has now been cancelled as we weren't getting anywhere (meaning that I am not coping any better even after a year and a half and my improvement is too minimal) I also see a psychiatrist - I use the word "see" very loosely - I am waiting for my next appointment - which will be appointment 2 of 2 that I have been waiting for Things I'd like help with Agoraphobia - I'd like to be able to go out by myself, I'd like to be able to enjoy myself when I do go out Social difficulties Talking about and dealing with my personal problems and history The way I think Social inclusion/socialising Coping methods Learning how to deal with how I feel Depression Independence I would like to learn to drive, have friends, do things with people, get a job I would like to learn how to function better in society There are a million others but these are the main things, and I think that dealing with some of these would enable the same skills to be transferred to other situations I'm leaving it there, I just want to add that I'm not expecting a magic wand but ALL of these things I have been trying to deal with for 10 years and I'm not getting anywhere, I don't expect someone to do everything for me, all I would like is a helping hand from these people (care-coordinator, psychiatrist etc) They speak as though AS is the cause of all my issues and as such there is nothing I can do - and more important, there is nothing they can do.... I don't believe this. I really don't. Anyway hope that clarifies a few things. Please feel free to ask if any of this doesn't make sense Regards Darkshine

I'm 30 and recently got AS dx. I want to help myself, but in some areas of my life could do with a little help to achieve some things. I have been waiting for appointments. I recently had appointment 1 of 2, the response was basically "we aren't hopeful that we can do anything for you" so am having to wait while a few things are "looked into". I'm not being purposefully negative BUT I am not hopeful. How can they sit there on one hand and say "don't sorry too much as AS is just a part of you" and then the next minute say "we don't deal specifically with AS and AS is what your problem is" Halfway through I manage to point out that MH difficulties are not a characteristic of autism - they are not a diagnostic criteria - they can co-occur, but AS does not necessarily cause MH problems or vice versa and their approach doesn't make sense. I said that if the MH is separate... why can't you help me deal with that? Since this isn't AS... No response. As I said a minute ago: I am not trying to be negative but... my first reaction (gut instinct/intuition) was that they were going to use AS as a reason to say "sod off" (in simple terms) I haven't voiced this opinion to them - but I have thought it for some time now and it really does seem to be going that way. Is there anything I can do about this? I am trying to get more knowledge, but I'm getting the distinct impression that any help will require a fight to get it... Is this right? Does everything have to be fought for? Like the seagulls in Finding Nemo all shouting "mine mine mine"? I'm hoping the answer is NO as I'm really not very good at this kind of thing. Or should I just give up and try to do this myself? (which is what I've been trying to do for 10 years and still haven't got very far!!!!! which is very dispiriting) I'm not sure what the waiting will bring, or what will come of the next appointment but I feel it makes sense to try and learn what my options are!?! I am interested to know if this is the typical response to adults by MH services. I'd like to know what can be done about it? Do they have any responsibility to help after dx? I feel like I should just quit talking again Anyway, that's where I'm at - it feels like limbo!!!! - I need to find a course of action that is realistic, so if anyone has any comments on any of this that'd be good, as a bit of outside input on this may help me find the direction of where I'm going next.

Your welcome - Just glad that the person my comment was intended for understood what I was getting at - and hopefully other people will sort of too - it is so hard to define what is meant in a way that won't be misunderstood (I struggle with this at the best of times - mainly because I know what I mean and forget it doesn't always come across to other people so clearly.... Good luck with the happiness

Speaking of Super Nanny..... Saw something related to this in a rerun..... She decided the little girl was doing it for attention (in the sense that the negative attention of scolding, cleaning and changing was still seen as attention by the kid) and as a consequence the kid had to sit in wet pants for a bit (not hours or anything) and the end result was the kid didn't like sitting covered in... ahem **** or **** and consequently stopped. I don't know if this is at all relevant in your Alix's case or whether this method is appropriate or anything.... I've just had a brief look and under a post called toilet training its mentioned: Link I think that when you do find something that helps, consistency is key - but this is easier said that done sometimes!

Think Peter Gabriel released it under his own name after leaving Genesis... not 100% sure... but I had the song stuck in my head for a day or so after leaving old Norfolk - catchy tune I hope I don't find tunes for the others!!!!!

I am sorry about the futility of this comment but.... I wish you every luck with this, I am in the middle of my own battles with "the system" and understand the sheer frustration of this process especially when it seems that nothing is happening. I don't understand why some people have to fight for everything, I find it really shocking that the differences in quality of services differ so drastically by region and by 'who' you see. Also the level of training differs so much across 'professionals' so that it feels like a hit and miss kind of thing. I hope you can get somewhere with this. Best Darkshine

A lot of this discussion is exactly where I am coming from, I have lived with the hope that I will sort out everything and that it can all be "fixed" somehow. When I was diagnosed with AS it suddenly felt like that wasn't the case. The logic went like this: mental health probs can be fixed - ASD can't I see this may appear ignorant, but it is how it felt. I think it is true, that the way you handle something, think about it or approach it, will effect the outcome, that if you view something as unfixable it will be unfixable etc... The thing I disagree with is that relabelling things as autism doesn't change anything... I think it does change things, it changes how you understand yourself, how others understand you, it changes how you think about yourself and your past, it changes your comprehension of so many events - including hours spent talking to 'professionals', it changes how society views you - some people are really accepting, others are really ignorant, and consequently this changes how people feel they can behave, for some the mask can lift, they know why they are how they are, for others the social pressures remain and nothing really changes. The term also is relevant in terms of employment - again mixed responses and as someone pointed out mental heath as a term has its own stigmas attached. Xye, I understand that you don't know how to respond through fear of upsetting people, I myself have had a few days off from saying anything for this very reason and because I have had problems with getting across what I'm saying in a way that won't be misunderstood. I hope you are braver than me and keep trying because it is you that you are trying to help, so I guess its important to remember not to give up on that. Its also really important to remember that not everyone will agree, but if you try and read other people's responses with an open mind you can take from that what feels right to you at the time. It is through these different opinions that you can find a 'balance' of sorts for your own opinions (e.g if everyone agreed with you - there might not be anything useful to gain from the discussion) In terms of your original question about employment I think it depends from situation to situation, it would depend if you wanted to be up front and say "hey this is who I am, but I might need a helping hand or a bit of understanding" or whether you preferred to keep it to yourself... there are benefits to both, but being open is probably the healthier option in terms of acceptance and if you ever did need help the employer would at least be aware and possibly help - even at the risk of being turned away by some employers because of it... I reckon it also depends on how autism would effect your ability to work, if it wasn't really a factor then maybe you wouldn't need to say about it.....

I wish I had an answer for you, I don't unfortunately and it would be inappropriate to guess. All I can do is shake my head that you aren't getting help with this, as obviously it will become more of an issue as she gets older. Do you think that you might have an increased chance of dealing with this effectively if you could find out why she does it? It can be difficult for a child that age to express themselves at the best of times so getting to the root of the problem could be challenging - also its hard to understand whether this is a response she has because of a 'syndrome' or a more general response in some kind of way of expressing a problem she has.

I asked this too! The Norfolk Broads are flat, which I assume is why they are the first stage.... and so on....

I'm not sure about links between PDA and soiling specifically, your daughter isn't diagnosed with this but hypothetically I wonder (if this was the case) if the problem could be related to the social demand/expectation to use toilets (and as such the parental demand to do so). If the syndrome is about the person pathologically avoiding demands in an attempt to control situations it wouldn't be inconceivable to use toileting as a means of control. After all, whether we are diagnosed with a condition or not, toileting is something on a very basic level that we all have a degree of control over. Also, the fact she doesn't soil at night suggests (to me) that she does have a degree of control over this. I wonder if CAMHS could help you identify the reason she does this (for example: control, attention, a way of expressing herself/other issues, lack of understanding) and come up with methods to enable you to be able to deal with the problem? Out of curiosity.... What do you do when she does this? e.g what do you say, do, how do you act, how does she respond to this?

Well!!! How silly are we?!?! Thanks Tally Although saying that..... we might have lived in ignorant bliss of our silliness.... Hmmmm.... Nah, I'd rather know.

Not only is this moderately weird Tanya - but I've already read this AND responded to it and that has disappeared too.... Hmmmm glitch springs to mind, spooky eh? Well, I'd better say it again then Thank you for you tip - I think I came across something very similar to this a while ago and to be honest I had completely forgot about it!!! I struggle with this technique but have to admit that it did work for some things - I'll have to look into it again, ta for reminding me best darkshine

Hello and thank you for getting back to me, I am trapped in a vicious circle and don't know how to get out of it - I am struggling to talk so things are getting on top of me and then I feel worse and so on.... I used to have a mental health liaison worker but after she left (she was brilliant) and I got assigned a new one the contact number she gave me didn't work and I received no reply to my emails (Three - 2 within a month and another a couple of months later) I contacted the OU about this - (this was in 2009) and for various reasons haven't got anywhere with this (the reasons are: the guy I needed to talk to was away a lot, a lot of holding and listening to greensleeves and to be honest I have given up before due to feeling like i wasn't getting anywhere) I also got a DSA for a mentor but didn't have the first clue how to find one - I'm a bit thick when it comes to finding things (I don't mind, its just not my strongest area) - I didn't get the forms last year and emailed them about this and now i have to start that whole process again too. I have extra time allowed for the exam (an hour and a half) - however I am about a month behind now and am really worried that the exam date cannot move, which will leave me very short on time for the final assignment. Thankfully my tutor is supportive - it has been hard for me to discuss things with her but I am trying... She said she will call on saturday to see if we can work out a study time-table for the rest of the course. I hadn't thought about asking if she would be willing to break down questions/concepts - I will run it by her when she rings. Student support services told me to download and send a form in - special circumstances - which I have been searching for and still haven't found - its been 45 minutes - it really shouldn't be this hard as it should be on my home page but isn't! It is really frustrating because I hate asking for things - it makes me feel like a sponger or that I'm wasting people's time... As you can see I did set up some things a few years ago but it seems to have gone a little astray, but I don't know what else to do other than ask because things aren't getting any better. Its just so isolating sometimes - and then with health matters now too which are also currently isolating - I am feeling very lost and alone about it - at least now I have some proactive things to try to help improve the situation. Thank you again for your thoughts, I will see if some of this can help me move forward - and even though I haven't quoted them - I really appreciate the tips Best darkshine

Thank you, I wasn't aware they had bases at all! I think regarding speaking I'm gonna somehow have to learn to find my voice cuz they don't pay much attention to writing... I find it very frustrating when I have to say something several times to be understood - its easier to give up sometimes Yep I'm not so sure about this.... well.... I'm sort of in two minds about it. I wonder if 'we' can learn.... Because I can clearly remember a million events that 'taught' me not to talk.... I'm not sure I can explain, but maybe its like a catch 22, like maybe autism on its own doesn't stop you communicating... its other people who don't understand... Did you ever just give up trying? I did, many times, but then you aren't practising so your teaching yourself you can't communicate maybe... I'm not sure if this makes sense at all? Do you see? If we had confidence to try it might get easier. I really hate the whole people misunderstanding me thing, and me not understanding things that "should be obvious". Your welcome - although there's some things I wish I hadn't said sometimes I would like to experience belonging, but there's one thing I know for sure, I've spent ten years boxed up in a room, I'm not putting myself in another one - by that I mean that things like this are brilliant but me, I need to get out into the world too. It does seem connected in a way I cannot explain.... Thank you Katherine - and sorry for quoting you like a million times Baggage I think a lot of people have that. I've heard the tony atwood book mentioned before - not sure what the general opinion is on it but I don't think I can face it just now. I've noted the details of the other book you and bd have been discussing - will look at a review and see what I think (some sites give a sneak peak) Thanks for posting Darkshine But where do you find it?!? So, we've ascertained that the NAS website is a main port of call, and possibly regional ones? There are books about for people to read. Are there no other useful websites? How about methods people use to help themselves? For instance I know CBT exists and what it is, but what other things can we try? By try I mean to be able to deal with a particular problem - or cope better with it. Also a lot of things seem to be things to do inside - like reading or websites? What if you need to outside but can't do this, so you need to learn how to do this, I'm not sure that reading is the best way forward for this kind of thing?

Thanks Tanya I'll have a think about that - I think I've heard something like this before but had completely forgotten about it! Thank you for reminding me

Thank you for replying Simon - I think I'm inclined to agree with you - maybe there isn't much difference - then again - maybe there is! I'm not sure - like you I can only comment from experience, but not necessarily is my experience accurate... Do I dare say? No

This made me laugh - I wish I'd have thought of saying that when he said about the boat thing in the first place!!! I'm assuming you understand that I was just pointing out that sometimes things can be gradual but not to give up if it is gradual - think I prefer the motor idea myself though - got any for sale?

Like a lot of people I went through this stage as a teenager, except for me it didn't end. I couldn't talk to my parents at all about things and got the "yeah well, that's life there's worse to come" as a first response. They actively taught me that the world was bad, don't trust people, don't talk. At a particular low point (I was about 15) I screamed at my mum that I wanted to die, her response? She told me to go get a knife. Needless to say it worked and I didn't - but through this time my relationship with my parents deteriorated so much that I actually hated them - and I don't mean a brief childish hate either. I do not hate my parents now - it has taken a long time - but I think I can understand why they made the choices they did and we all agree that they were the wrong ones. I wish that they had even thought to try attention, talking and listening because at least I would have felt validated - I think all of us want to be heard sometimes. You say its as though he is creating this list of bad things - I did this - it got very very long and I came to all the wrong conclusions because of it. The best thing a very wonderful person taught me - was that when these things go unchallenged it is like being in a board room, but you are the only one there at the meeting, if nothing gets challenged then false beliefs occur. He said that changing things is like pushing a boat with your finger, you can push and push and see no change, but slowly, oh so slowly it moves. I wish someone would have taken the time to talk to me when I was a kid and had the commitment to keep trying with me even when it seemed like little progress occurred - because the boat thing makes sense - you don't always see change as it happens then suddenly the boat is moving.... Oh and for what its worth, I think a dose of reality isn't a bad thing - "there is worse to come sometimes" - but if you realise that it'll be ok - that just because it gets worse - doesn't mean it won't get better - and have the skills to cope with it, it shouldn't be the end of the world.

I'm posting here because the question is generally about help, advice, adult dx and autism. I'm recently diagnosed as I've said already (but there's over 6000 members so you won't all know this)... I've been visiting this site since the 23rd of May - and I am still at a total loss of what to do. In some ways its been like visiting abbreviation and acronym city - I'm really tempted to list them so you can re-experience the hell of this but I'll save your eyes Basically I haven't got a clue, not a clue, about any of this, AT ALL. I essentially know absolutely NOTHING. So in the spirit of ignorance can someone please tell me everything I should / could / might do right now please? Cuz I really don't have an iota of a clue. This will sound so dumb but I never thought this would happen, I never knew what a referral to the developmental clinic meant - to begin with I didn't really think about it - I never asked for this to be done! The appointments talking to the man about stuff was alright, I liked him, he said the right things so I could answer ok, better than most I've seen, I thought it was fun playing with the computer programs and questionnaires and things, he made me feel less nervous and I was pleased that he listened, he even adjusted his diary so he could see me (with my parents) when they would be here on a visit. I didn't like the meeting with them there, and he wasn't interested in asking me anything at that time (obviously cuz he wanted to talk to me folks) so I put Nine Inch Nails (band) on my ipod pretty loud and looked at the stupid pictures on the walls, we were there a LONG time, I listened to loads of songs, I don't know much of what they said, I didn't want to hear it, I didn't want to know, I wanted to pretend it wasn't happening. I'm so tragic I'm crying now. Because I'm not sure if this is real. My parents stopped asking me what his report said. I haven't told them. I haven't told any of my family or any of my friends. Only you guys, who I don't even know and who don't even know me - and why would anyone care - I'm just one small voice in an ocean of shouting and I'm pretty used to being drowned out. Its just.... something inside tells me I have to try. I don't know if I should have help, I don't know what help there is if I should, I don't know if I should be talking to someone? or if I should just shut up? I don't know what's out there that could help in any way. I don't know what things are called or anything! If I was a 12 year old I can find plenty of things to look into - but in the plainest way of saying it - and I hate saying it cuz it sounds so selfish - it doesn't help me! And how can I get anywhere when I can't communicate properly - because I've told them everything and I must be using the wrong words cuz they don't understand - I don't know how else to say things - its cuz I come across with no emotion and they think I don't feel. I'm always wound up to hell when I go and that makes it worse, there might as well be walls built round me. I don't know whether this makes a difference or not, but if I'm honest with myself, it feels like I need help. So for me, and for all the other adults out there who feel any of this or anything else, can anyone please let us know what we should do? Because I don't know about anyone else but I'm not taking this at all well but I would like to do something constructive about it because since this 'process' all the progress I had made a few years ago has all gone right down the pan and I'm back to living in a bedroom for 95+ percent of the day, week, month, months. They won't lock me up will they? Seriously?

Obviously not interesting eh? Shrugs - well I thought it was