"Mental Health" Services

[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.

[charlotte]

welcome.

 

have you thought of attending autscape this year you are like to find great knowlege on all this there. also the autism show

[darkshine]

welcome.

 

have you thought of attending autscape this year you are like to find great knowlege on all this there. also the autism show

 

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

[Tally]

This is very frustrating. The mental health service should help people with mental health problems regardless of any other diagnoses they may have.

 

Mental health chsrities SANE and MIND may be able to advocate for you and help you get the support you need. PALS may also be able to help.

[darkshine]

This is very frustrating. The mental health service should help people with mental health problems regardless of any other diagnoses they may have.

 

Mental health chsrities SANE and MIND may be able to advocate for you and help you get the support you need. PALS may also be able to help.

 

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....

[Tally]

An advocate would not turn it into a fight. They won't take over or speak to anyone without your permission. If you speak to someone and ask what they can do, then you can decide whether you want them to do it. At first though, it might just be a matter of helping you work out things you can do yourself. You might not need anyone to actually intervene in any way in the end. It wouldn't do any harm to make some initial contact with someone and see what they suggest.

[AdamJ]

Darkshine, I realise you're not asking for anyone's sympathy but for what it's worth, you have mine.

 

The AS dx in itself won't trigger any support from the mental health service. After all, you're the same person you always were but now with a label. But you've got a set of secondary issues that are a virtual facsimile of my own so I truly do sympathise. First a disclaimer: I'm not a doctor. That said, it doesn't take a PHD to see that the professional best placed to help you is a clinical psychologist. My advice would be to go to your GP, explain your problems and ask to be assessed by a clinical psychologist. The assessment will determine whether or not the therapy they can offer will be effective.

 

The psychiatrist's input will probably be limited to a diagnosis and a prescription. Medication has its place but I feel sure that therapy from a clinical psychologist would benefit you. I know it helped me.

 

Note to moderators: I hope this advice to see a psychologist doesn't break your rules.

[Tanya52]

Hello,

 

You have made a really good step to understand your problems and I do appreciate that it’s took time and effort.

 

Do you have a good plan how to assess their weightiness in order to build a complex of your own unique tailored for your needs strategies?

 

I learnt in a hard way that people, especially professionals, will give up on me if they see that I expect them to do all job for me. I presume that they see it as an enormous, impossible task if I project a strong disbelief, that I’m able to handle it.

 

I also learnt that it’s all about collaboration, strategising and learning your partners’(never enemies!) priorities. If I come to my appointment with expectations to be ‘messed around’ – there will be a good chance that my expectations will be a concrete promise.

 

Again, a part of my reality is that many years I’ve been experiencing severe panic attacks and have to handle some issues of social anxiety on daily bases. These are my liabilities. I have to equalise them with my assets like taking risks for example. Is it difficult? It sure is. There’re many assets of mine, which nobody but me will create to my advantage. What are yours?

Edited June 12, 2011 by Tanya52

[darkshine]

An advocate would not turn it into a fight. They won't take over or speak to anyone without your permission. It wouldn't do any harm to make some initial contact with someone and see what they suggest.

 

You are right, it can't hurt to find out, I just hate to ask - but I think I am going to have to start asking a bit more - thanks tally

 

 

Darkshine, I realise you're not asking for anyone's sympathy but for what it's worth, you have mine.

 

The AS dx in itself won't trigger any support from the mental health service. After all, you're the same person you always were but now with a label. But you've got a set of secondary issues that are a virtual facsimile of my own so I truly do sympathise. First a disclaimer: I'm not a doctor. That said, it doesn't take a PHD to see that the professional best placed to help you is a clinical psychologist. My advice would be to go to your GP, explain your problems and ask to be assessed by a clinical psychologist. The assessment will determine whether or not the therapy they can offer will be effective.

 

The psychiatrist's input will probably be limited to a diagnosis and a prescription. Medication has its place but I feel sure that therapy from a clinical psychologist would benefit you. I know it helped me.

I appreciate your comments Adam I have difficulty remembering how all this stuff works - the way everything has to be done is very confusing - especially since everyone all works in the same building so I forget that I might need to ask GP thing sometimes. I just figured that since its the care-coordinator and a psychiatrist asking questions all the time that they can sort things out - but this does not seem to be the case. It is good to be reminded that there are options

And no I wasn't fishing for sympathy but in a way its nice to have a little - it has been a very bad weekend for me and its nice to come on here and see kind words. Thank you.

 

 

Do you have a good plan how to assess their weightiness in order to build a complex of your own unique tailored for your needs strategies?

 

I learnt in a hard way that people, especially professionals, will give up on me if they see that I expect them to do all job for me. I presume that they see it as an enormous, impossible task if I project a strong disbelief, that I’m able to handle it.

 

I also learnt that it’s all about collaboration, strategising and learning your partners’(never enemies!) priorities. If I come to my appointment with expectations to be ‘messed around’ – there will be a good chance that my expectations will be a concrete promise.

 

Again, a part of my reality is that many years I’ve been experiencing severe panic attacks and have to handle some issues of social anxiety on daily bases. These are my liabilities. I have to equalise them with my assets like taking risks for example. Is it difficult? It sure is. There’re many assets of mine, which nobody but me will create to my advantage. What are yours?

 

 

Hi Tanya,

 

Do you mean which problems are biggest? Like the most difficult?

 

I narrowed it some time ago and came to the conclusion that coping methods (social and other), depression and the way I think are the biggest issues that are present throughout everything else and if I could deal with these then the skills could be applied to other situations somehow.

 

I try to go to the meetings with a neutral outlook - I cannot do positive, I can do negative, and I can do realistic except in this case realistic is negative cuz everything seems to be dead-ends - so basically I'm trying to stay neutral.

 

I want to improve my life and I am willing to work hard to do that but it is so hard when I am struggling on my own - I am trying to work with these people but I'm convinced they are fobbing me off.

 

I'm not sure what my assets are.... I can't think of anything that is an advantage - there are things that may be good assets in a human being, but they are just ones that make life worse, I'm not sure if I understand what you mean... Do you mean like being able to do a certain thing or be a certain way?

[AdamJ]

I overlooked the fact that you have a care coordinator. Forget your GP, ask your care coordinator to be assessed by a clinical psychologist. Give him / her something to coordinate for once!

[Tanya52]

Good morning,

 

There’s so much in your language that indicate your believe system like negations and opposits( ‘yes but no’). I’m not doing critical discourse analysis of your written language here. It’s your health we are talking about. From my point of view you need to start working with your believe system first. You can start evaluating them in two groups: garbage and assets.

[darkshine]

I overlooked the fact that you have a care coordinator. Forget your GP, ask your care coordinator to be assessed by a clinical psychologist. Give him / her something to coordinate for once!

 

The care coordinator believes that there is no therapy available or suitable.

This person is only interested in referring me to an ASD service/association to solve my problems.

They are looking into me seeing someone to talk to - and cbt, but they are only doing this because we insisted that it should at least be requested - the response prior to this was that they didn't believe that this could be offered.

 

I'm sorry if this comes across as confusing, I'm trying my best to explain it all

 

My carer says to me - that they might surprise me - its just that I don't see how that can be, when the care-coordinator is going into it with an attitude that suggests there is no point even asking, then it probably doesn't have a high chance of happening...

 

This is why I'm trying to learn if as a human I have any right to anything... So far, it seems that asking for advice and learning is a good starting point so that I can be well informed so I know what I am talking about and what I can do...

[darkshine]

Good morning,

 

There’s so much in your language that indicate your believe system like negations and opposits( ‘yes but no’). I’m not doing critical discourse analysis of your written language here. It’s your health we are talking about. From my point of view you need to start working with your believe system first. You can start evaluating them in two groups: garbage and assets.

 

I am glad you aren't doing a critical discourse analysis of my language Tanya Although they do say that a lot can be learned about a person from the language they use, and the way they use it....

Health..... My belief system is shot to pieces, I don't know if I believe in anything, I suppose I must cuz I have many many negative beliefs, but when I say I can think of anything - I mean positive beliefs or beliefs that aren't negative.

I worked on something like this once before about 5 years ago with a psychologist, we were challenging negative and incorrect beliefs. And we were finding what my core beliefs were as well - they were things like "I am nothing" "I am worthless" "The world is bad" "People cannot be trusted" etc and these were what everything else was supposed to be based on.

Is this similar?

[AdamJ]

The care coordinator believes that there is no therapy available or suitable.

This person is only interested in referring me to an ASD service/association to solve my problems.

They are looking into me seeing someone to talk to - and cbt, but they are only doing this because we insisted that it should at least be requested - the response prior to this was that they didn't believe that this could be offered.

 

I'm sorry if this comes across as confusing, I'm trying my best to explain it all

 

My carer says to me - that they might surprise me - its just that I don't see how that can be, when the care-coordinator is going into it with an attitude that suggests there is no point even asking, then it probably doesn't have a high chance of happening...

 

This is why I'm trying to learn if as a human I have any right to anything... So far, it seems that asking for advice and learning is a good starting point so that I can be well informed so I know what I am talking about and what I can do...

 

It's incredibly difficult to get referred to an NHS psychologist for CBT so if you've got it, well done you.

[Tanya52]

Hello Darkshine,

 

Hope you are OK. I'm sorry things didn't work for you in the past. I also puzzled how are you doing your positive thinking? Are there things which can give you a lift, like music, books or something else? I build my mental anchors and they are always here for me. Sure you must have some too.

[darkshine]

It's incredibly difficult to get referred to an NHS psychologist for CBT so if you've got it, well done you.

You have hit the metaphorical nail on the head there Adam, for 2 reasons

 

1, Obviously this is how the MH services seem to be (at least in my experience)

2, I haven't been referred, just waiting to see if the boss of the care-coordinator thinks its even a possibility to even think about a referral

 

I guess I was hoping that some people would write here to say they had better luck - in a weird way it would give me some extra hope - of course someone still might, and I do have some avenues to explore while I wait now which is good.

 

I guess in answer to my own question (post sub-title) this is just how it is for me right now, and that certain aspects are like it for others too (like the impossibility of CBT for example).

 

Have you had a similar experience with this? If we share similarities with "problems", what did/do you do about them?

 

Just out of curiosity

 

Best

Darkshine

 

 

 

Hello Darkshine,

 

Hope you are OK. I'm sorry things didn't work for you in the past. I also puzzled how are you doing your positive thinking? Are there things which can give you a lift, like music, books or something else? I build my mental anchors and they are always here for me. Sure you must have some too.

Hello again

 

At the moment I am not doing positive thinking, I'm using the "lets ignore it til we blow up" technique - It sounds stupid, and to say "I can't help it" sounds feeble, but I just don't have the focus to challenge my thinking, my mind is all over the place and so are my moods, and I'm finding it very hard to care about things that I really should care about.

 

The easiest way of explaining my life is to say I am on auto-pilot, I wake up, I eat, I bathe, I get dressed some days, I try to go out when possible, I go through the motions of life but I am not really here. A lot of every day is dark and depressing and just to go through the motions of maintaining life is such a struggle.

 

I'm getting brief windows of time when I can function to a more "normal" level and am trying to use these as best as I can to get things done, but this is not enough, everything is slipping backwards, everything should have been done weeks ago and I just don't have the energy to catch up. I'm awake for a few hours and then I get really tired, if I don't sleep I am like a zombie because I'm so tired, I can't think, I can't talk, I can barely stay upright and keep my eyes open. The annoying thing about this is I go through this every single day - trying to get to a reasonable time to go to sleep and then night-time arrives and click - I'm awake until 3am at least - and repeat and repeat and that is my life...

 

What is a mental anchor? You use a lot of terminology I haven't come across before - I like the idea of a mental anchor, anything anchored might stay....

[Sally44]

I don't know if the National Autistic Society might have some information about mental health services. Afterall that has been one of their campaigns.

 

From my understanding of using CBT for those on the spectrum, I have been told that the person needs certain skills for that therapy to have any chance of being effective. So you need to be seen and assessed first. If the care co-ordinator cannot/will not do it - I don't know if a visit to the GP might be worth it. Use a GP that you feel has been supportive or understanding of your diagnoses and difficulties.

 

I think that even if you are turned down initially that it is worth visting PALS and putting in writing a request to your care co-ordinator or GP or both that you want them to challenge the refusal for CBT or whatever. If it is a refusal to even refer you, again PALS and/or the NAS should be able to help you word any letter.

 

As always the argument about 'money' seems to help. And it seems to me that an adult that has difficulties to such an extent that they need adult support for significant amounts of time, and are restricted in their daily life and living, would be more cost effective to refer to ClinPsych and get some support that improves the situation and allows an overall reduction in the need for daily support - if that makes sense.

 

Just don't take no as an answer. That seems to be the first way of screening out people whether it is no to being assessed, or certain medication, or certain therapies, or certain support. Those that are persistent tend to eventually get something. But I know how hard that is to do when you are advocating for someone else, nevermind trying to do it for yourself at the time you are suffering from depression - which by definition means you may have a lack of motivation and a sense that nothing will happen or change anyway.

 

As the saying goes "faint heart never won fair lady" - or in your case "faint heart never won CBT".

 

And whenever you are asking for referals, always ask if anyone within that service/department has experience of working with adults on the spectrum.

 

So I would try the mental health charities for advice and support.

The NAS for advice and support.

Your GP and Care Co-ordinator for referals to ClinPsych.

PALS.

[Tanya52]

Sorry to confuse you with this term ‘mental anchor’ . I think that I borrowed it from Eric Berne’s Games People Play or maybe What Do You Say After You Say Hello. It’s simply positive self-images, ideas or even affirmations which I create and use for self-motivation and self-encouragement. Using these simple tools I fixed the first huge barrier – luck/absence of self-trust. I knew that I didn’t trust/believe myself. So, I promised to myself to take care for myself in a way as nobody else could. It works like an agreement or a contract with the third party, only the beneficiary is I. Keeping promises is extremly important for me, so, I simply utilised something, which I knew I’m good at (=assets).

 

I wish I could help more.

[AdamJ]

Darkshine, I've sent you a PM. Please may I ask you to respect the privacy of the message.

 

All the best,

 

Adam

[darkshine]

Sorry to confuse you with this term ‘mental anchor’ . I think that I borrowed it from Eric Berne’s Games People Play or maybe What Do You Say After You Say Hello. It’s simply positive self-images, ideas or even affirmations which I create and use for self-motivation and self-encouragement. Using these simple tools I fixed the first huge barrier – luck/absence of self-trust. I knew that I didn’t trust/believe myself. So, I promised to myself to take care for myself in a way as nobody else could. It works like an agreement or a contract with the third party, only the beneficiary is I. Keeping promises is extremly important for me, so, I simply utilised something, which I knew I’m good at (=assets).

 

I wish I could help more.

 

Hello again That's perfectly ok, I just figure that its best to ask if you don't know something. It is an interesting idea, promises are also very important to me too, so important that I don't ever make them unless I'm at least 99% sure that I will keep them. I also agree with what you said being able to take care of yourself in a way nobody else can.

I will think about the things you have said...

Best

Darkshine

[darkshine]

From my understanding of using CBT for those on the spectrum, I have been told that the person needs certain skills for that therapy to have any chance of being effective.

 

Do you know what these skills are?

 

 

As always the argument about 'money' seems to help. And it seems to me that an adult that has difficulties to such an extent that they need adult support for significant amounts of time, and are restricted in their daily life and living, would be more cost effective to refer to ClinPsych and get some support that improves the situation and allows an overall reduction in the need for daily support - if that makes sense.

 

This makes sense - and is a clever argument

 

Just don't take no as an answer. That seems to be the first way of screening out people whether it is no to being assessed, or certain medication, or certain therapies, or certain support. Those that are persistent tend to eventually get something. But I know how hard that is to do when you are advocating for someone else, nevermind trying to do it for yourself at the time you are suffering from depression - which by definition means you may have a lack of motivation and a sense that nothing will happen or change anyway.

 

This has been the problem for me for a long time and its all too easy to feel like the situation is un-winnable, but I can see that there are ways to cope/deal with this. It just feels very difficult to always be trying to - almost outwit "the system" if you see what I mean.

 

 

And whenever you are asking for referals, always ask if anyone within that service/department has experience of working with adults on the spectrum.

 

So I would try the mental health charities for advice and support.

The NAS for advice and support.

Your GP and Care Co-ordinator for referals to ClinPsych.

PALS.

 

Thank you for your clear and thoughtful response - and the summary at the end!!! (It really helps!)

 

It feels like there is so much I don't know and there are a number of things that other people have said that I had forgotten until now - I do not find it easy to think in these ways, but I can see that I am going to have to for a time or nothing is going to happen to change my life - I just wish it wasn't so hard!!! (dealing with the services on top of everything else)

 

Regards

 

Darkshine

[philipo]

The reality is is that most health authorities have been swamped with request for diagnosis and treatment.In practice they are just doing metal health triage.The people exhibiting the most severe symptoms will get help ,usually involving drugs,because its cheap.I've been waiting for 6 months for an appointment to see a Cognitive phycologist,in all this waiting time i've understood more about the subject (ASD) and myself than the nhs could help me with .The most shocking thing is that when I finally get this appointment it is highly likley that I will be talking to someone who has just swotted up on the subject and who knows very little.One major problem that many with HFA face when asking for help is that they come across as intelligent,and so when i go for my appointment the shrink will very likley to be dismissive when I explain i'm a self taught musician.sound engineer.lighting technician.motorcycle and car mechanic,a qualified yatchsman and powerboater with a broad general knowledge of mental health with agreat knowlege of 18,19,20th century ceramics and world history BUT and this is a big BUT.I am incapable of following days of the week and time,get lost going shopping,shreik at the sound of sirens and air brakes on buses and have a strong tendency to run outside and stare at aeroplanes when they pass over!!!! Aftyer 30 odd years of being treated like a d)))))head by the social and the nhs its no wonder I've developed a political revoloutionary tendency.Now I'm rid of my family responsibilities and only understood i had been suffering from asd last Autumn after complaining to my GP's about clear physical and mental symptoms for over 30 years (aged 48)I can only conclude that nothing or very litle will be done for sufferers unless we create a significant fuss,which in my little head of personal madness means economic warfare as at the end of the day the NHS and the 'State' will take no notice unless it interferes with the slavish creed of capitalism.IE the only consensus is money so when I start costing them a fortune then they may be more inclined to spend a lot more money on what is a major problem that probably affects a million people in this country.I'm mostly past caring about getting help from a crapulant NHS but as an older man and a good parent I can only give my life for the benefit of the future,which means our children and our childrens children .Until that time comes for me,I'm so glad as asd sufferers WE HAVE EACH OTHER,and this website is the forefront of KNOWLEGDE on the subject of ASD's.REMEMBER the nhs spends more on gastric bands and doling out methodone to junkies than helping people with ASD's.BY DEFINITION the NHS is fossilised and institutionalised with so many powerfull vested financial interests,and ASD's are obviously not one of them.

[darkshine]

One major problem that many with HFA face when asking for help is that they come across as intelligent,and so when i go for my appointment the shrink will very likley to be dismissive when I explain i'm a self taught musician.sound engineer.lighting technician.motorcycle and car mechanic,a qualified yatchsman and powerboater with a broad general knowledge of mental health with agreat knowlege of 18,19,20th century ceramics and world history BUT and this is a big BUT.I am incapable of following days of the week and time,get lost going shopping,shreik at the sound of sirens and air brakes on buses and have a strong tendency to run outside and stare at aeroplanes when they pass over!!!!

 

Hello philpo, I have this problem, not in exactly the same way but very similar. When I am in meetings with people they say that I come across as intelligent, I'm always doing courses towards a degree and can learn something very quickly when its of interest or if its technical/mechanical or a manual task (nothing close to genius level, but I can pick things up pretty quick cuz I can just "see/feel" how it works or what to do), I can write and do certain creative things too.

 

But like you I have problems in other areas - Keeping track of time is a nightmare, the only reason I know what day it is is cuz I get told, I try to keep track but it just loses me, time isn't much better - it either won't pass at all or I lose hours and forget to do things I should do. The weekend drives me nuts cuz all the tv changes then when its the week it changes again, so I never get used to it - I barely watch tv cuz I hate it when the schedules of programs change (as in the program ends or moves channel, or they suddenly start the series over for no reason, or the repeats aren't in order!!!! To name an few reasons...

 

I don't get lost as I can put maps or routes into my head and see them as a graphic representation of where I am, or I use triggers in the surroundings to tell me where to go. Its as though I just know.

 

And other things that seem simple to everyone else I know, are very hard for me, like organisation in daily life, but I have organisational skills in other things, I just can't transfer the skill across (this happens a lot too - where I learn a skill in a certain circumstance and don't realise that the knowledge or skill is transferable to other situations so everything has to be re-learnt over and over again)

 

Movement outside is another big problem, everything seems too fast, and some days I just can't cope with all the information coming at me. I have a main road near my house and the traffic noise thunders through my head everyday, some days I just want to scream to drown it out, or put a giant sign outside saying "YOU ARE RUINING MY LIFE".

 

Anyway, getting side-tracked - so yeah, when I sit there and they say I'm intelligent and stuff, I want to yell at them when they tell me I should understand certain things (I often don't understand why people say things or do things) and because I'm intelligent this is supposed to make me feel better? It just makes me feel stupid - personally I think a lot of people would make a lot more progress if the services would forget about intelligence, as in my opinion it has nothing to do with it.

 

I always feel like I cannot be myself in this world, my life is filled with opposites and the whole world feels incongruous.

 

Its why I understand your feeling towards aspects of society (NHS, capitalism etc) I however was not designed for waging war on anything

[philipo]

I always feel like I cannot be myself in this world, my life is filled with opposites and the whole world feels incongruous.

 

Its why I understand your feeling towards aspects of society (NHS, capitalism etc) I however was not designed for waging war on anything

Now how you feel ,i was'nt designed to wage war but I rather the future was very different for my daughter and hundreds of thousands of others ,who suffer from asd,she's at uni now but thankfully not Salford.

When I went to uni I got no help after pleading repeatdly to get help with a basic weekly pattern,Five minutes aweek on monday was all I asked,but as you are aware ,most people are oblivious to asd problems.I used to get 4 buses and 2 train journeys aday to go to uni.For thew first few months I'd turn up on saturdays!I'd get on the train and think to myself'umm a different vibe in the air this morning.' Not the obvious like ' the trains nearly empty and you can acyually get a seat in commuter rush hour!I 'd then go home and lie to my partner about where i'd been so she did'nt think I was any stupider than i was.God we have to laugh at ourselves.I ended up leaving and made a pop video for them called 'Salford Uni is (unspeakable four letter word ,ryhmes with fit)I learnt nothing off them except they are just greedy for money and a degree in most subjects is compareable to an old fashioned o or a level!Remember all your strengths!!!try youtube/ERASMUS320,for understanding my visual world!!!

Ps I'm the same with traffic,last month (theoretically 4 weeks ago!) I was told off by a care worker for painting 'Autisim is a daily hell' on the wall next to the main road,i curse emergency sirens and aeroplanes and have many text based urges that i'd like to paint on walls,one I did said 'Go to work,pay your taxes and shut the (word decribing things that go quack) up!',thinking the world could try commuting quietly!I think that many asd'rsunderstand things too literally and should understand that most normal people take it for granted to be shallow and bend the meanings of words,they call it communication 'skills'.I cant stand the low iq of television and have a distinct loathing of fictional culture,like film and novels,I think its a reaction to being unable tto decipher the duplicity of social communication,Keep well and remember your a lot saner than most and there must be millions of us asd types from one extreme to the other.x

[darkshine]

Hey philpo, I actually typed a response to your post yesterday - being er sunday (will this matter!?!) anyway, it was 2 nights ago and then my router got corrupted (how ironic) and I had to wait ages for my housemate to create a new network - STRESS (and these things are supposed to make life easier?)

 

I listened to your salford uni is #*%# - quite liked it, apart from the middle bit which made my head hurt like it does when I get overloaded and it made my brain hurt (in the place where footballers hold their head in their hands when they lose) which was slightly weird

 

Ps I'm the same with traffic,last month (theoretically 4 weeks ago!) I was told off by a care worker for painting 'Autisim is a daily hell' on the wall next to the main road,i curse emergency sirens and aeroplanes and have many text based urges that i'd like to paint on walls,one I did said 'Go to work,pay your taxes and shut the (word decribing things that go quack) up!',thinking the world could try commuting quietly!

I wish I had the nerve to do it!!!! I enjoy entertaining the idea at times though

 

I think that many asd'rsunderstand things too literally and should understand that most normal people take it for granted to be shallow and bend the meanings of words,they call it communication 'skills'.I cant stand the low iq of television and have a distinct loathing of fictional culture,like film and novels,I think its a reaction to being unable tto decipher the duplicity of social communication,

I think I can decipher enough of the social rubbish to get by, but I do so with a resentful heart, and a feeling of helplessness cuz I want to be like 'them'... I don't mind fiction or films, one reason I like films (on dvd) is that its something predictable in the background and it masks the sound of traffic also, as much as I love music, I can't listen to it all day, every day forever... I barely watch tv and am in agreement in the main in that.

 

Keep well and remember your a lot saner than most and there must be millions of us asd types from one extreme to the other.x

thanks I guess

I'm sure it was you who said they lived in the woods for 3 months? It made me smile cuz according to 'society' that would make you nuts, but they aren't necessarily right are they? I sometimes wish I lived alone in a cave somewhere, or living wild in the woods, surviving purely on my own skills - now why does this seem easier than trying to live in this world? I guess this would make me nuts too...

I bet this has some tribal urge style psychological basis somewhere

 

My biggest problems (today ) with life is that skills come and go, which makes it very hard to have consistency.

And my mind is like a void - everything goes in, but I have problems retrieving the information sometimes (often the most inconvenient times - typically)

 

[philipo]

thanks I guess

I'm sure it was you who said they lived in the woods for 3 months? It made me smile cuz according to 'society' that would make you nuts, but they aren't necessarily right are they? I sometimes wish I lived alone in a cave somewhere, or living wild in the woods, surviving purely on my own skills - now why does this seem easier than trying to live in this world? I guess this would make me nuts too...

I bet this has some tribal urge style psychological basis somewhere

 

My biggest problems (today ) with life is that skills come and go, which makes it very hard to have consistency.

And my mind is like a void - everything goes in, but I have problems retrieving the information sometimes (often the most inconvenient times - typically)

 

 

I found that many asd'rs do a bit of running away,as a result of stress and anxiety,and seem to have a preference for woodland and water,as do many stressed 'normals' i suppose.It so calming for me and acts to destress me and calm down an overstimulated mind,with tv/media/etc being a mostly negative input that raise mental confusion.

Were not nuts,the majority of the population are nuts,killing and consuming and thinking the high point of their culture is x factor!!

I find my skills come and go and i forget what I can do .Three years ago the ex suggested I become self employed so I said I'd restore classic 70s motorcycles and do film production.She thought I was starting from scrathch with the motorbikes and when I restored the first one she was amazed,in all the years she'd known me she never thought I was capable of the intricate skills needed for motorcycle restoration.same with film production.'You never told me you could do that' she said.I replied 'I forgot'.I then explained to her that I thought all my vast skills were just 'occupational therapy' that I used to keep my mind focused from 'spacing out,or disasociation'i see that it 's just the technical/creative bent that comes with asd's .I was undiagnosed then but obviously intuitively knew my 'problems'.You may feel your skills come and go but if you want to use them they will always be there,even if you've forgot you had them.It may help you to do a stock check every while,write down all the skills you have to remember them and see how you can combine them.

When put on the spot by others I have a nervous reaction and forget what I should be saying,which leads to people thinking i'm a bit thick,its just lack of confidence/nerves.

I beleive asd'rs are superior to the normal 'drones'.I know its hard but keep remembering that there's loads of plus's and thats what makes you the you you are.!thanks for reply.

[philipo]

thanks I guess

I'm sure it was you who said they lived in the woods for 3 months? It made me smile cuz according to 'society' that would make you nuts, but they aren't necessarily right are they? I sometimes wish I lived alone in a cave somewhere, or living wild in the woods, surviving purely on my own skills - now why does this seem easier than trying to live in this world? I guess this would make me nuts too...

I bet this has some tribal urge style psychological basis somewhere

 

My biggest problems (today ) with life is that skills come and go, which makes it very hard to have consistency.

And my mind is like a void - everything goes in, but I have problems retrieving the information sometimes (often the most inconvenient times - typically)

 

 

I found that many asd'rs do a bit of running away,as a result of stress and anxiety,and seem to have a preference for woodland and water,as do many stressed 'normals' i suppose.It so calming for me and acts to destress me and calm down an overstimulated mind,with tv/media/etc being a mostly negative input that raise mental confusion.

Were not nuts,the majority of the population are nuts,killing and consuming and thinking the high point of their culture is x factor!!

I find my skills come and go and i forget what I can do .Three years ago the ex suggested I become self employed so I said I'd restore classic 70s motorcycles and do film production.She thought I was starting from scrathch with the motorbikes and when I restored the first one she was amazed,in all the years she'd known me she never thought I was capable of the intricate skills needed for motorcycle restoration.same with film production.'You never told me you could do that' she said.I replied 'I forgot'.I then explained to her that I thought all my vast skills were just 'occupational therapy' that I used to keep my mind focused from 'spacing out,or disasociation'i see that it 's just the technical/creative bent that comes with asd's .I was undiagnosed then but obviously intuitively knew my 'problems'.You may feel your skills come and go but if you want to use them they will always be there,even if you've forgot you had them.It may help you to do a stock check every while,write down all the skills you have to remember them and see how you can combine them.

When put on the spot by others I have a nervous reaction and forget what I should be saying,which leads to people thinking i'm a bit thick,its just lack of confidence/nerves.

I beleive asd'rs are superior to the normal 'drones'.I know its hard but keep remembering that there's loads of plus's and thats what makes you the you you are.!thanks for reply.

[Mumble]

I beleive asd'rs are superior to the normal 'drones'.

[irony] Yes, yes, of course we are. [/irony]

 

thinking the high point of their culture is x factor!!

I think you need to be a little careful in the way you dichotomise into a them and us ASD/NT. If I were to mock those 'weirdos who are completely nuts who find the highlight of their day to be taking apart and restoring motorbikes and who have never watched an episode of X Factor' I don't think you would be too impressed. I'm ASD and I watch X Factor. Does that make me confused/uncultured/blah/etc.? No - it makes me an individual with my own individual likes and dislikes. Everyone should be entitled to that without being mocked.

 

Now..my goodness, have you seen those people who think the cultural highlight of their day is to watch Eastenders? I mean, huh? do they have a life?

 

[philipo]

Thats very true Mumble,and we should be carefull,I've watched x factor and eastenders and others and most media is for people who cant create their own 'cultural life'.

Never been a telly head myself,its all so mostly predictable,theirs probably 64 psyhcological variations on a story and they repeat,oh god they repeat.

years ago I had the misfortune to help a murder victim before she died.This obviously did nothing to help my general anxiety.In response and for self help I decided to sit down and watch 'telly' to chill out a bit and numb my mind.What I quickly realised is that the soaps and regular tv stuff was mostly about tension ,trauma,life and death situations..It was as if the populace needed to have trauma in order to understand their 'feelings'.This is the essence of culture.Without any tension ,discord,problem,dicotemy,then theres not a 'story' and the results are not very commercial,in that they don't have any SHOCK and AWE.So..all them years ago I tried to calm my nerves with generic banality or TV as some people call it.Can you imagine my suprise when I quickly realised it was really trauma tv,like Londons Burning,Emergency,the Bill etc...If you want to be objective about storylines then sit down with a pen and paper and note how many positve interchanges and how many negative interchanges take place between characters.

Thank god were all individuals...or are we? When I became increasingly aware of my ASD what was really upsetting is realising that a big chunk of my interests,tendencies,anxiety reactions were the same as many others with asd's,it was a bit to chew on that my life had been more a biological pre destiny than one of concious choices(which i had assumed till diagnosis) so I don't mind if anyone calls me completly nuts.If I popped loads of anti depressants then I would personally have no problem watching the misery of the soaps,and double on sunday,but that would stop me using the positives of my asd like getting up and creating my own media and culture.

You are right Mumble I should be more carefull with crass generalistic remarks,one that really hurt was from a'freind'(nt fiend) who said I could'nt be asd as I kept it together as a family guy for over twenty years,he admired my commitment to my partners and children.i realised not to take his opinions personally as he's normal,an occasional wifebeater, and adulter who's intellectual highlights of the day is dicussing Lady Gaga's mamallalry glands and Cheryl Coles relationship problems,its all relative and I should be more carefull about having a go at large swathes of the population,that same large swathe that discriminates against ASD'rs.Democracy....from the Greek/latin demos the mind of the mob,

Apoligies if i've offended anyone....

[darkshine]

I found that many asd'rs do a bit of running away,as a result of stress and anxiety,and seem to have a preference for woodland and water,as do many stressed 'normals' i suppose.It so calming for me and acts to destress me and calm down an overstimulated mind,with tv/media/etc being a mostly negative input that raise mental confusion.

Were not nuts,the majority of the population are nuts,killing and consuming and thinking the high point of their culture is x factor!!

I know what you mean about running away, escape is an excellent thought (except some of us want to escape from ourselves )

 

I beleive asd'rs are superior to the normal 'drones'.I know its hard but keep remembering that there's loads of plus's and thats what makes you the you you are.

If I'm honest, I do hold contempt for most societies - I just don't say too much about it cuz it was a factor that got me a false dx of bi-polar they interpreted my contempt as a superiority thing (anyone who has met me knows the truth is the complete opposite )

 

[irony] Yes, yes, of course we are. [/irony]

 

I think you need to be a little careful in the way you dichotomise into a them and us ASD/NT. If I were to mock those 'weirdos who are completely nuts who find the highlight of their day to be taking apart and restoring motorbikes and who have never watched an episode of X Factor' I don't think you would be too impressed. I'm ASD and I watch X Factor. Does that make me confused/uncultured/blah/etc.? No - it makes me an individual with my own individual likes and dislikes. Everyone should be entitled to that without being mocked.

I don't mind watching the auditions - its amazing how many deluded people there are who think they are the next big thing!!! And their family and friends tell them they are good too!!! So cruel So funny to watch Maybe this should have been in the dark/dry sense of humour post?!?

 

Never been a telly head myself,its all so mostly predictable,theirs probably 64 psyhcological variations on a story and they repeat,oh god they repeat.

This is true, and the main reason I don't watch tv (yet at the same time I watch/listen to the same dvd over and over again )

 

 

You are right Mumble I should be more carefull with crass generalistic remarks

 

Apoligies if i've offended anyone....

I'm not offended, I spend enough time watching every word I say to make sure the sentence "comes out right" that I then can't be bothered most of the time with things other people say - its opinion and subject to challenge from others.

 

Its very difficult to not make generalisations because unless you specifically know everything about something, then you always have to generalise, from your own experiences and those of other people. And its also difficult to view things that seem very different sometimes and not end up with a dichotomy - maybe through ignorance, or closed minds, or lack of experience/knowledge.

 

But lets face it, however much we all try to be open-minded and accepting, the world is filled with "them and us" situations.

 

Does anyone else think this smiley is accurate? ---->

 

:lol: :lol:

 

I wondered if anyone at all has had a positive or useful experience?

 

And if the services are just abysmal then why are they?

 

Is it just money? Or is it our culture? Are these things still taboo - like sweep the problem under the carpet and hope it goes away? Will the situation change? Is our country behind the times?

[Mumble]

Does anyone else think this smiley is accurate? ---->

 

:lol: :lol:

It usually is whenever/wherever I post. Poor mods.