What Do I Do Next?

[darkshine]

Hello,

 

I'm in need of some advice because I'm a hypocrite, I've always been fine with anyone who has a disability, medical condition, or has something 'wrong' with them (whatever that may be). But now I've been diagnosed with AS I'm totally not fine with it. At least I’m an honest hypocrite (this is actually hard to admit to), I don't see why it should make a difference, but it has and it is. What’s worse is I’ve spent around 11 years being messed around and being passed from pillar to post while achieving nothing before getting to this point.

 

I’m depressed, to the point of appearing entirely without empathy or interest in anything, I’m constantly tired and I sound like a broken record moaning about pain and tiredness.

I don't go out, I don't see anyone, I struggle a lot with depression and many associated problems, crowds are impossible and noises drive me mad.

 

I don't know what to do, there are no ASD specific services within a range that I can get to and the mental health services I do have access to are offering very little help whatsoever and I don't know how to ask cuz I feel bad for asking, i feel like I should cope and it sounds demanding and weak to keep moaning about things.

 

The problem is I'm not coping, there has been no support at all for this diagnosis, they just dropped the bombshell and sent me on my way and I don't know if I'm useless because its affected me to the point that I'm not doing anything now, or if I'm pathetic cuz I want to ask for help. Ever since that I can’t get interested in anything.

 

What I want is a degree of "normality" in the sense of being able to function better with daily life. What isn't normal or healthy is that I sit in bed for over 20 hours a day every day because I feel safe there.

 

I don't know where to go or who to ask. There’s a care coordinator that I see but nothing happens to help and the meetings are few and far between – my last contact with anyone to speak of was around diagnosis time 3 months ago. I have no family nearby and no friends/support to turn to and I have no access to a car and public transport is still a nightmare for me.

 

A respite agency sends a worker every Thursday to get me out of the way so ‘my carer’ can have a break and on Monday’s some woman from another agency comes and we go through a charade of hell as I try to ‘get used’ to going into a nearby town in the hope I can do it alone, its actually making things worse but I am told to stick with it (it’s been a year and it is NOT helping!!!)

 

I’m in so much pain: mental, emotional and physical that I feel dead inside, and this has triggered one of those times in my life where I can’t even cry, I might feel better if I could cry… Maybe it would be easier if I could shout and scream and harm myself and cry my eyes out and maybe someone could see how I’m feeling – I assure you I am doing all this inside – it’s just that no one can see so they think I’m ok.

 

I’d appreciate any comments, similar experiences or even people moaning and telling me to get a grip, but what I’d really really like is some advice on what to do, is there any help out there? Are there people familiar with ‘the system’ that can say what things I should be looking for, and when I FINALLY go to my appointment (at the end of June) with the guy who assessed me – what should I say to him to see if there’s anything anyone can do to lend me a helping hand through this because I’m honestly lost.

 

I thought my life was rubbish last year but it’s definitely gone downhill more. And the worst thing is this hollow deadness, I can’t even react! I’ve read other’s posts and I wish I felt like that because in a way it’s better than this limbo-type nothing.

[Sally44]

You've only recently had a diagnosis and that is a very difficult time.

When my son was diagnosed it took me over a year to begin to come to terms with it.

Can you get any help via the National Autistic Society?

Who is the carer you mention and do they live with you?

 

Only thing I can suggest is rather than just a visit into the town every week, do you have any interest for you to go and do that once a week instead? You might be more motivated to go somewhere to do something you like?

 

Anxiety is horrible. My son has it and is not currently in school.

[Tally]

I'm sorry you're struggling. You do sound very, very down.

 

In theory there should be support with the depression. Is it possible the mental health team are unaware of how much you're struggling? You have explained things very clearly in your post, so maybe you could write some things down for them if you can't get it across so well with speech.

 

Maybe these support people who take you out could help you look at other things you can do instead. You might benefit from some help with independent living skills within the home, or using public transport, for example.

 

Have you looked into mental health support/social groups nearby? It obviously wouldn't be ASD-specific, but they do tend to be more common than ASD groups.

[sesley]

how old are you? why don't you contact the NAS http://www.autism.org.uk/ they might be able to help you get support and someone to talk to. Your life might be rubbish for you now and i know its difficult to say there is a chance to turn things around for you,but you are not rubbish. You just need motivating to get out of bed and get yourself a life you can be happy with.

[baddad]

Hi darkshine -

Having had a brief look through some of your posts I would agree with Tally that you need to seek support from your local mental health team. You seem, since receiving your dx a few months ago, to have retrospectively labelled all negatives in your life as 'Asperger's', and IMO that's probably an oversimplification. Aspergers per se does not explain the list of 'symptoms' you describe/are experiencing (if it did, all autistic people would experience them and non-autistic individuals would not; they would be part of the diagnostic criteria), so looking to autism for answers probably overlooks a number of fundamental questions.

 

TBH, I'm always slightly concerned when people with established, long-standing mental health issues are diagnosed with Aspergers, because there are so many aspects of mental health issues that can give rise to precisely the same behaviours without autism actually being a factor at all. Increasingly, as the DSM criteria has evolved, the umbrella term 'autism' - especially AS - has expanded massively, with the number of observable 'traits' needed for diagnosis reducing accordingly. It has become increasingly easy to apply the dx, and increasingly common for the dx to be used as an explanation for behaviours arising from co-morbid conditions that would have previously been investigated properly, and/or possibly 'ruled out' prior to diagnosis.

 

Was it the same team you have been seeing for the past twelve years who diagnosed you, and if so has that diagnosis made you ineligible from further support from them (you say you haven't seen anyone for over three months)? If they referred you elsewhere or you went elsewhere has that diagnosis been used as a justification for saying you are ineligible for support? You don't say where you were going (CAMHS, maybe?) but they can't discharge you purely on the basis of a 'new' dx; they are there to offer support based on needs not diagnosis, and your mental health needs haven't changed.

 

Picking up on one thing you said in an earlier post:

 

Since the diagnosis my whole life feels different now because there's suddenly an explanation for all the things that didn't add up in my life

 

That's to some degree a natural response to dx, but it's also an unrealistic one. The reality is that almost everybody - autistic or NT - feels there are huge chunks of their lives that just don't 'add-up'. For some of that bad maths AS probably would figure somewhere in the equation, but so would many other factors. AS, if relevant at all (to a particular 'symptom', I mean) is only ever going to be part of the bigger equation and can't provide an explanation on its own.

 

L&P

 

BD

[sesley]

our 11 year old has now completed I am Special which explains differences in human beings,including the one for him autism. He did say to me he is disabled and i felt that i needed to change the word to a more positive word of challenge.My ethos for him is to make ASD a positive thing. For him to have self worth and thats what you need self worth. Its important to find away for you to be positive about yourself . You are what you are.Different,unique,special. You need to find something good about your life. We as humans are all different. Seek professional help. Make them listen to you.Do you have any interests? You can follow?

[darkshine]

You've only recently had a diagnosis and that is a very difficult time.

When my son was diagnosed it took me over a year to begin to come to terms with it.

Can you get any help via the National Autistic Society?

Who is the carer you mention and do they live with you?

 

Only thing I can suggest is rather than just a visit into the town every week, do you have any interest for you to go and do that once a week instead? You might be more motivated to go somewhere to do something you like?

 

Anxiety is horrible. My son has it and is not currently in school.

 

It feels a difficult time, I don't know much about NAS, my carer lives with me, and at this time I'm not interested in anything (this will change eventually - I hope sooner rather than later).

[darkshine]

our 11 year old has now completed I am Special which explains differences in human beings,including the one for him autism. He did say to me he is disabled and i felt that i needed to change the word to a more positive word of challenge.My ethos for him is to make ASD a positive thing. For him to have self worth and thats what you need self worth. Its important to find away for you to be positive about yourself . You are what you are.Different,unique,special. You need to find something good about your life. We as humans are all different. Seek professional help. Make them listen to you.Do you have any interests? You can follow?

 

Positivity and self-worth have been a big problem for many many years, nothing seems to work and I don't know what to do about this, I have seen people about it in the past but for various reasons it hasn't worked (personality clashes, not enough time on their part, me)

[darkshine]

I'm sorry you're struggling. You do sound very, very down.

 

In theory there should be support with the depression. Is it possible the mental health team are unaware of how much you're struggling? You have explained things very clearly in your post, so maybe you could write some things down for them if you can't get it across so well with speech.

 

Maybe these support people who take you out could help you look at other things you can do instead. You might benefit from some help with independent living skills within the home, or using public transport, for example.

 

Have you looked into mental health support/social groups nearby? It obviously wouldn't be ASD-specific, but they do tend to be more common than ASD groups.

 

I've tried telling the MH team, and my carer has too, I've also written it in a dozen ways. I've thought about using a tape recorder and seeing if I can say things that way so I won't be side-tracked or interrupted.... I'm trying to look into other services but I don't really know what I'm looking for...

[darkshine]

Hi darkshine -

Having had a brief look through some of your posts I would agree with Tally that you need to seek support from your local mental health team. You seem, since receiving your dx a few months ago, to have retrospectively labelled all negatives in your life as 'Asperger's', and IMO that's probably an oversimplification. Aspergers per se does not explain the list of 'symptoms' you describe/are experiencing (if it did, all autistic people would experience them and non-autistic individuals would not; they would be part of the diagnostic criteria), so looking to autism for answers probably overlooks a number of fundamental questions.

 

TBH, I'm always slightly concerned when people with established, long-standing mental health issues are diagnosed with Aspergers, because there are so many aspects of mental health issues that can give rise to precisely the same behaviours without autism actually being a factor at all. Increasingly, as the DSM criteria has evolved, the umbrella term 'autism' - especially AS - has expanded massively, with the number of observable 'traits' needed for diagnosis reducing accordingly. It has become increasingly easy to apply the dx, and increasingly common for the dx to be used as an explanation for behaviours arising from co-morbid conditions that would have previously been investigated properly, and/or possibly 'ruled out' prior to diagnosis.

 

Was it the same team you have been seeing for the past twelve years who diagnosed you, and if so has that diagnosis made you ineligible from further support from them (you say you haven't seen anyone for over three months)? If they referred you elsewhere or you went elsewhere has that diagnosis been used as a justification for saying you are ineligible for support? You don't say where you were going (CAMHS, maybe?) but they can't discharge you purely on the basis of a 'new' dx; they are there to offer support based on needs not diagnosis, and your mental health needs haven't changed.

 

Picking up on one thing you said in an earlier post:

 

 

 

That's to some degree a natural response to dx, but it's also an unrealistic one. The reality is that almost everybody - autistic or NT - feels there are huge chunks of their lives that just don't 'add-up'. For some of that bad maths AS probably would figure somewhere in the equation, but so would many other factors. AS, if relevant at all (to a particular 'symptom', I mean) is only ever going to be part of the bigger equation and can't provide an explanation on its own.

 

L&P

 

BD

 

Hi Baddad,

 

The service I see isn’t discharging me at the moment, they are saying that they don’t know what to do, that the services here don’t cater for this and they don’t know if anything is available, this is very isolating and frustrating because I’m left not knowing what to do and thinking that they are just going to fob me off, because they were seeing me regularly before the dx and now they aren’t, there is a asd group in a town several miles away but the only way to get there is by bus and I am unable to do that either.

 

It might sound like I think all the negative things are cuz of AS but I don’t, what I’m finding negative is dealing with this on my own. Things like low self-esteem, low self-worth, depression, hating myself, my body, my life, my voice, my face, the fact I shouldn’t have existed in the first place etc are not because of AS. Also the many bad events that happened I don’t blame on AS either, what does make me stressed is the ‘what if’, if my family knew would they have treated me differently? Would they have understood? Could it have helped at school? Could I have been taught the things I’ve had to learn when I was younger, instead of the painfully slow way that I taught myself, with a lot of ridicule and shunning by others. Could I have learnt life skills and all that sooner? If none of these things had happened, would I feel how I do now? If my family hadn’t been how they were would I have got depressed in the first place? If I knew that things were different for me than for them could I have understood everything 20 years earlier. Things might have been better, though they could have been worse too.

 

Where I think AS is relevant is it may provide an explanation for some of the things that I personally never understood, there are things that there was never an explanation for:

 

Like everything just not making sense, not caring about people but wanting a friend so badly I would cry from the loneliness, loud noises hurting head and making me curl up and scream, crowd noises being worse than a freight train, I can’t look in people’s eyes – it feels like they burn into me, I struggle to understand people’s meanings, moods, emotions and I take them too literally, and I don’t always get jokes, wanting to run away when there’s too many people, I can’t do things if someone watches me, I collect things to extremes and get obsessed over weird things, the labels in clothes drive me insane and I can only wear certain types of clothes, materials etc, I have to keep my hair really short because the weight of it hurts my head, I can’t stand anyone touching me but I crave contact, people seem to have this circle of stuff around them that I can feel, it’s like an aura or something, like static and energy and if it feels negative I don’t want to be anywhere near them, it’s bigger on some people than others and varies in intensity, I hate wearing socks (hate it hate it hate it) and don’t really like wearing shoes, movement of things like people and traffic goes too fast and confusing and every object outside seems to leap at me for attention, this makes me very stressed and anxious, a couple of embarrassing ones are when I forget and start walking around on tiptoes, when I just have to touch things, and when I get stressed I knee tap, kick, stamp, hit myself, rub my hair really hard, bite myself and I can’t not do it. The happy ones are spinning, bouncing and hand tapping. I just don’t understand this world or the people in it, I’ve never fit in and I don’t know where my place is. I get these stupid impulsive urges to do anything from hit someone, to touching something hot, to wanting to break something delicate. When I’m talking to people I go on way too long and they get annoyed and if I actually have an argument I can’t stop until I have some sort of meltdown or I’m so horrid to them that they cry. I can’t touch cotton wool ever! Along with several other things that have crunchy fibres – even typing that bit freaks me out. I don’t know if I love anyone or not, even my parents, I cry when people die but I’m not sure if this is because I love them or because it interferes with my routine – I think I love them but then I can also not care if I ever see people ever again – until I get bothered again – it sounds very selfish but I can’t help it – I do miss people. I get attached to objects more than people. Everything I know, I have learned, and though that sounds dumb and a little obvious, I mean I’ve actually really had to try so very hard to learn it – if people do this then I should do that, when this happens - I should do that, and so on, I mimic people’s facial expressions and reactions and their tone of voice as I increase my repertoire. I hate it when I or someone says something and then I can’t stop saying it and I keep saying it ‘til the word loses all meaning and it doesn’t even look like English anymore and makes no sense, it loses its reality – another annoying one that makes me look like a nutter and drives everyone mad – fortunately this doesn’t happen as often anymore – happened a month ago with the word ‘soon’. I quite often am alone in my own company and can lose hours by myself then other times I feel like I’m sitting on the outside looking in on this functioning world around me and I’m sad that I can’t be a part of it, and that I can’t be me, I always have to try to be this normal thing to fit in with everyone else because they don’t accept the types of behaviour I have so I have to be very rigid and self-controlled, locked away and shut off, the real world cannot see me at any cost because they won’t like who I am, they’ll judge me and that will be even worse. I don’t recognise people I know in the street (even my family) until they leap in front of me. Food is a complete nightmare – if I never had to eat again I would be happy (apart from KFC and chocolate). On top of that I get days where I am so clumsy it’s unreal where I just lose the plot and bruise my arms and legs bumping into doorframes and cupboards or falling up the stairs (yes up them). I like things that melt. I absolutely hate small talk – it feels like reading lines from a play and I wonder why people lie or why they even do this? I don’t care about most of that rubbish and I stand there I shout in my head and try to say the right things and hope they go away quick. People tell me I say things I shouldn’t but I don’t see why and then other times I say nothing at all and even if I want to my mouth won’t open and let me say them. I think using logic a lot of the time and this seems useful in some ways but emotionless and blunt in others and also the logic isn’t always right.

 

I’m stopping there cuz this is like 1300 words now…

[jb1964]

Like everything just not making sense, not caring about people but wanting a friend so badly I would cry from the loneliness, loud noises hurting head and making me curl up and scream, crowd noises being worse than a freight train, I can’t look in people’s eyes – it feels like they burn into me, I struggle to understand people’s meanings, moods, emotions and I take them too literally, and I don’t always get jokes, wanting to run away when there’s too many people, I can’t do things if someone watches me, I collect things to extremes and get obsessed over weird things, the labels in clothes drive me insane and I can only wear certain types of clothes, materials etc, I have to keep my hair really short because the weight of it hurts my head, I can’t stand anyone touching me but I crave contact, people seem to have this circle of stuff around them that I can feel, it’s like an aura or something, like static and energy and if it feels negative I don’t want to be anywhere near them, it’s bigger on some people than others and varies in intensity, I hate wearing socks (hate it hate it hate it) and don’t really like wearing shoes, movement of things like people and traffic goes too fast and confusing and every object outside seems to leap at me for attention, this makes me very stressed and anxious, a couple of embarrassing ones are when I forget and start walking around on tiptoes, when I just have to touch things, and when I get stressed I knee tap, kick, stamp, hit myself, rub my hair really hard, bite myself and I can’t not do it. The happy ones are spinning, bouncing and hand tapping. I just don’t understand this world or the people in it, I’ve never fit in and I don’t know where my place is. I get these stupid impulsive urges to do anything from hit someone, to touching something hot, to wanting to break something delicate. When I’m talking to people I go on way too long and they get annoyed and if I actually have an argument I can’t stop until I have some sort of meltdown or I’m so horrid to them that they cry. I can’t touch cotton wool ever! Along with several other things that have crunchy fibres – even typing that bit freaks me out. I don’t know if I love anyone or not, even my parents, I cry when people die but I’m not sure if this is because I love them or because it interferes with my routine – I think I love them but then I can also not care if I ever see people ever again – until I get bothered again – it sounds very selfish but I can’t help it – I do miss people. I get attached to objects more than people. Everything I know, I have learned, and though that sounds dumb and a little obvious, I mean I’ve actually really had to try so very hard to learn it – if people do this then I should do that, when this happens - I should do that, and so on, I mimic people’s facial expressions and reactions and their tone of voice as I increase my repertoire. I hate it when I or someone says something and then I can’t stop saying it and I keep saying it ‘til the word loses all meaning and it doesn’t even look like English anymore and makes no sense, it loses its reality – another annoying one that makes me look like a nutter and drives everyone mad – fortunately this doesn’t happen as often anymore – happened a month ago with the word ‘soon’. I quite often am alone in my own company and can lose hours by myself then other times I feel like I’m sitting on the outside looking in on this functioning world around me and I’m sad that I can’t be a part of it, and that I can’t be me, I always have to try to be this normal thing to fit in with everyone else because they don’t accept the types of behaviour I have so I have to be very rigid and self-controlled, locked away and shut off, the real world cannot see me at any cost because they won’t like who I am, they’ll judge me and that will be even worse. I don’t recognise people I know in the street (even my family) until they leap in front of me. Food is a complete nightmare – if I never had to eat again I would be happy (apart from KFC and chocolate). On top of that I get days where I am so clumsy it’s unreal where I just lose the plot and bruise my arms and legs bumping into doorframes and cupboards or falling up the stairs (yes up them). I like things that melt. I absolutely hate small talk – it feels like reading lines from a play and I wonder why people lie or why they even do this? I don’t care about most of that rubbish and I stand there I shout in my head and try to say the right things and hope they go away quick. People tell me I say things I shouldn’t but I don’t see why and then other times I say nothing at all and even if I want to my mouth won’t open and let me say them. I think using logic a lot of the time and this seems useful in some ways but emotionless and blunt in others and also the logic isn’t always right.

 

I’m stopping there cuz this is like 1300 words now…

 

Hi Darkside,

I don't really have any advice for you - but just wanted to say that your description makes me so sad - everything you've written has been described by my daughter. I wish I had something to help.

Take care,

Jb x

[darkshine]

Hi Darkside,

I don't really have any advice for you - but just wanted to say that your description makes me so sad - everything you've written has been described by my daughter. I wish I had something to help.

Take care,

Jb x

 

Sorry if I made you sad (or anyone else)

I was just trying to explain how it is

[AdamJ]

I relate to more or less everything you've written and you have my sympathies too.

 

You could ask to see your care coordinator more frequently. The problem is, do you feel you get any benefit from seeing the care coordinator? Mine was a perfectly pleasant nurse who came round periodically for a quick chat over a cup of tea, largely to satisfy himself that I wasn't on the verge of throwing myself under a train. I didn't really get any benefit myself from those meetings.

 

In my blacker periods when I was suicidal, I got daily visits from the Crisis Team. They are also the gatekeepers to the psychiatric hospital here and they have sanctioned my admission there three times. Being an inpatient benefited me by giving me a breathing space to get myself back on track without having to worry about domestic things like cooking or cleaning. Unfortunately, you have to be presenting some very strong risk indicators to stand any chance of an admission, in my area at least.

 

Two more professionals you could be talking to are the psychiatrist (they come at the problem from a medication angle)and a clinical psychologist, if available. I was lucky enough to have my case taken on by the NHS psychologist who diagnosed me, although it wasn't AS that got me there; it was my other mental health problems. The AS diagnosis was coincidental. Anyway, I think she has probably been the person most instrumental in helping me come to terms with it.

 

Never be afraid to ask, and never play down your problems. Let your care coordinator know how bad things have got for you and that you need more support.

[darkshine]

Hi Adam, thanks for your response, I've got an appointment with the psychiatrist who was in charge of the dx at the end of next month, everything is so complicated with mental health services, I'm hoping they will be able to help me come up with some sort of plan to deal with my issues, but here's my biggest problem, they don't seem to know and I sure as hell don't The thing that makes me angry is that they are supposed to have training and stuff, shouldn't they know?

Without going into the full history of my life.... this is what's happened over the last 2 years...

I had a care-coordinator, she set up these meetings once a month with a psychiatrist and a psychologist and we went over everything, this went on for a year, I constantly said I didn't see what the point was and nobody really gave an answer, I asked during session 3 if it was supposed to be some kind of therapy and was told no. As these meetings came to a close they were talking about trying NLP (neurolinguistic programming). Me and my carer both thought seeing a psychologist might help, we said this on several occasions and were told that because I'd seen one a few years before I had essentially "used up my quota".

Anyway, the next thing that happens is the psychiatrist gets a job elsewhere and the psychologist holds a resolution meeting to bring it all to a close. this left me and my carer with more questions and no answers and the psychologist was never seen or heard from again. Next, I am referred to the developmental disorder clinic and my care-coordinator has maternity leave - 3 months later I see this psychiatrist (sept last year) he starts the diagnosis, this takes 3 or 4 appointments and a nice long letter outlining his findings. This was in Feb I think and regarding my issues with this and all the previous issues I am trying to resolve absolutely NOTHING has happened, and to be honest I don't think it will.

I have problems talking to people and I don't know what I should say, I know my chance is in a few weeks, and I'm not sure if there's anything I should ask....