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Mountain Goat
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04 Oct 2019, 5:24 am

I don't know how to describe my feeling. I am slightly withdrawn. I am supposed to be going online or phone to claim some sort of benefit but I... It is not that I can't do it. It is that I am not comfortable in doing it. We know someone who helps people do these form things. She said that she can come next week to help if I can't do it. Incase I make a mistake, I think I will let her sort things out.
I think it will also involve me to go and see the benefits people who have their own seperate doctors who have a job to do which is to save the government as much money as possible. They may challenge me and try to put me on a different benefit where I need to look for work. If that is the case I will need to go back to having no benefit as I only need to claim because I am a bit too fragile to work. It is not that I can't work. It is more that I am internally falling into a bit of an emotional wreck after pushing myself through day after day after day of partial shutdowns. It is torture, and why I would go without any income rather then do that.
I am not money mad. If I had access to the governments money I would take what I need and give the rest back that I don't need. I am careful not to take what I don't need. Someone has said "You can claim this, and that..." I feel embarissed to claim more then I need. The governments money is given to them by the people and it is their job to make sure the people have what they need by using this money to help those who need a little support. As I live with my Mum and I help her and she helps me, I don't need a lot to survive.
If in the future my Mum dies, then I will certainly need a lot more.
How come I can fill out forms for other circumstances but if the form relates to myself, I am stuck? I used to fill out traincrew reports when on the railway. Ok, it often toom me 4 hours to do them as I was overtired and I had to bend the truth about how long it took me to fill them in... As officially one is not allowed to work over 12 hours in a shift... (Others would fill these forms out in 20 minutes!)
And working with bicycles has more of a pre-written type of format where every bike has the same sort of information so it is easy... In other words, Owners name, bike make and model, check tick list for PDI items and the frame number... Just basic stuff relating to the job.
Forms. If Ihad to write out a CV again I would be in a mess. It would take me ages and ages. BUT, once I had done it, applying for jobs is simply copying out this information... But if I tried to fill an application form without this pre-set organizing being done I would be stuck! I would just sit there with a blank mind unable to proceed! My Mum often used to help me in this way as she would start the ball rolling when I was stuck. It is a strange thing. I have all the answers in my mind but I can't find the mental compartments to open rhe mental doors to access rhe information, but if I have a pre-set type of form where I have a process worked out these mental doors fly open one by one! So one door is opened and the rest usually fly open by themselves...But not always. Usually, yes.

But back to the odd feeling. Firstly, at the moment I would rather not claim then deal with the forms. The thougt of filling out forms is more difficult to me (64 pages it says!) then the stress of havinb no money and going without. So, I need to wait for this lady as I am feeling wound up and tense.
Secondly, I am fearing the benefits people as they will want to interview me at the jobcentre (The very place I have a slight phobia about!), and I am likely to be in a partial shutdown... And I know what I am like in a partial shutdown as I will say anything to getnout of the building, and as I have a kind and gentle nature, I will be a people pleaser, so if they say I can't claim sickness benefit and will need to look for work, I will say "yes", but then come backmin the next day and quit signing on... I have done this before but where I went to sign on but signed off the next day as I could not cope with the stress, and I had two jobcentre staff (Which I later found they weee training agency staff and not jobcentre staff) had me sign two blank sheets of paper at the bottom right of the paper claiming I was not allowed to leave the building as I had forgotton to sign them, and they said their printer was not working. I was in a partial shutdown so I wasn't with it so I signed them and walked out. It was only after I realized it aas wrong, so I went in the next day and signed off claimingand went for a few years with no income.
The fear is, as a partial shutdown flows seamlessly from anxiety, and I get anxiety anyway, I don't feel the difference unless the shutdown starts to go deeper where I find I am struggling to walk and I need to be ling down on the floor (If I dont lie down, I soon will be like it or not if the shutdown deepens as my whole body goes limp like jelly!)
So the first part of shutting down I don't always realize I am there but I can certainly feel the fringes of shutting down which is what I know to be anxiety.

Anyway. I have said too much again... Just feeling odd. It is like some sort of anxious calm and almost peaceful panic? I am trying to stay calm so I am not working myself up... All will be well. All is ok.... I could so easily curl up in bed and wait until next week. (I sometimes do this if I have an appointment and am worried about it. Stay calm and lie in bed. Come out for food and toilet... Go back in bed and try to think of nothing (Is that possible?).



Ashariel
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04 Oct 2019, 7:49 am

I know that overwhelming feeling, when expectations seem impossible. It can be a symptom of depression, and/or executive functioning problems (both of which are common with autism). Your post reminds of how I feel, at times when I know something is off, but I'm having trouble pinpointing exactly what.

Hope this feeling passes soon. I find that it helps to just keep making baby steps, until things make more sense again!



Mountain Goat
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04 Oct 2019, 11:40 am

Thanks Ashariel.



Persephone29
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05 Oct 2019, 3:32 pm

I wish you were able to take an advocate with you to these appointments. I'm surprised they don't offer it. This is very important and everyone can't be signing up for themselves.


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Mountain Goat
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05 Oct 2019, 5:40 pm

I believe it is only available if I have officially been diagnosed.



Raphael F
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06 Oct 2019, 12:14 pm

Holy guacamole!

It took me approximately 8 years to convince the Department for Work & Pensions that Asperger's was
(1) a condition I had,
(2) a condition internationally recognized as a severe impairment, and
(3) an innate, lifelong, and unchanging condition, for which there is no cure and which cannot be expected to improve over time.

Do a Google search for the new D.W.P. "Severe Conditions Guidance", or else make sure your advisor does this, and make sure your G.P. includes the relevant buzzwords in his or her supporting letter. If your G.P. bridles when you attempt to talk tactics and have some input into his or her draft of the supporting letter, then find yourself a better G.P. immediately.

Three of the eight years alluded to above were taken up with persuading the local N.H.S. Mental Health Department to actually get its arse into gear and deliver the diagnosis; my private psychotherapist knew I had Asperger's, my G.P. knew I had Asperger's, I myself first suggested an A.S.D. diagnosis to my bone-idle N.H.S. shrink in the previous millennium, but the N.H.S. is often averse to diagnosing something it can't fix.

On the one hand, your aversion to engaging with the Benefit claim process is perfectly rational: the process is a Kafkaesque nightmare, and asking for free money does feel kind of cheeky, doesn't it? But you're only claiming on an insurance policy: for years, you and your family have paid your premiums regularly, in good faith (as I did...), and now through no fault of your own you need to make a claim. It's called National Insurance, and insurance is what it's supposed to be. No dishonour in expecting your insurers to pay out when you have a genuine claim.

On the other hand, there is an A.S.D. thing called Pathological Demand Avoidance (Google it...), and maybe you are experiencing a little touch of that? Which would be totally understandable, in the situation you describe. No dishonour there, either!

Oh, good luck, dear sir, good luck. Grab every helping hand you can see, and kiss it and keep tight hold of it (for as long as it actually seems to be helping, at least). Kick and scream as loud as necessary until your local Mental Health Trust can actually get its arse into gear and diagnose your condition: the D.W.P. will still try to deny it, but at least then you'll have a diagnostic report you can make some hay with.

And remember, most appeals are upheld. So, even if they turn you down the first time, you can still win in the end (in 2015, I helped another 100% genuine A.S.D. sufferer to submit an appeal, and he won, albeit it took seven months).


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Mountain Goat
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06 Oct 2019, 2:51 pm

Thank you sir. Most of the battle is that I an petrified of the system... And as I have no official diagnosis...
My doctor is lovely. I didn't recognise her as she changed her hairstyle. But she was very understanding. Is really the first time the doctors really know about the anxiety.... Is just the system should have a way for people like me to access it without needing to ask for help... I mean... What is wrong with an address to send the doctors notes to? While normally I can cope with using the phone, I have had such a horrendous time in the past trying to claim on the phone in the past. It was the worst phonecall I have ever had to deal with in my whole life. The lady was screaming in temper at me over the phone. I am glad I wasn't her employer. But the system is such that I fully understand how wound up the staff get... Though I hate being on the receiving end.

I find I just am not any good online either. Anyway. A lady is going fo help me soon. She is a friend of the family, and she helps people with the benefits system on behalf of a charity. So there maybe a delay, but all should work out somehow.

I really feel for others in the same position.



kraftiekortie
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07 Oct 2019, 5:24 am

I hope you get to keep all the trains, after all.



Mountain Goat
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07 Oct 2019, 6:13 am

kraftiekortie wrote:
I hope you get to keep all the trains, after all.


I have been trying to uncomplicate my life as the more I have the more stress to find dry places to keep them safe. I have, so far reduced my bicycle collection from over 100 bikes to about 20 (Only about a third of them are roadworthy or close to being roadworthy).
I am also slowly reducing other posessions because I need to de-stress as much as possible. Now the trains that are 7mm narrow gauge I absolutely love, so I am keeping those anyway. :)
The other trains are sitting there in their boxes, so I started selling them to survive. I have slowly been doing this for a few years...
The concern is that I should not have to sell my things to survive. I did say to the autism people that I habe a few too many and they pointed out to me that I should not have to be selling them to pay to keep my car on the road. (Where I live, without a car makes things difficult as there are no nearby bus stops without a long walk, and the return walk usually involves walking up a steep hill on narrow country roads... And when I am prone to shutdowns, I can't do it. We do have taxis, but because we are an outlying area, the prices are... Put it this way. The price to pay for a taxi to here I could easily drive well over 100 miles worth of driving on the same amount of moneys worth of fuel put in my own car.
If one lives in a city one as easy access to transportation. We are not that remote compared to others as we are only a few miles out. But we do need a means of transport to live here or have no issues with walking. My Mum can no longer get back up the hill. I can't walk if I am vunerable to shutdowns as it effects me in a bodily way. I used to cycle everywhere rather then walk... It is easier as the bicycle carries the heavy loads, and in the bad weather, I get just as wet walking the couple of miles to the bus stop as I would if I cycled the 7 miles into the town!



Raphael F
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07 Oct 2019, 7:43 am

Mountain Goat wrote:
Most of the battle is that I am petrified of the system... And as I have no official diagnosis...
My doctor is lovely.


You are right to be petrified of the system, although it is fractionally less brutal now than it was when Iain Duncan Smith first devised it: I think someone somewhere must have worked out that turning claims down only to have them upheld by the courts after a process lasting several months was actually costing the taxpayer more than it was saving. For those of us prone to anxiety (which tends to go with the A.S.D. territory), the current system could not be better designed to trigger and exacerbate anxiety, and nor is such anxiety irrational, because the system is rigged against the claimant.

A few years ago I put in a formal complaint against the D.W.P. for exacerbating my anxiety, as a claimant who was already on record as suffering severe anxiety: the D.W.P. stonewalled (naturally), so it went all the way to the Ombudsman who awarded me a few hundred quid compensation (thank you, Ombudsman, but no thanks to you, Iain Duncan Smith...).

Your doctor, if she were willing, would be perfectly justified in stating in black and white that it's believed you do have A.S.D. and you're awaiting a specialist assessment. My doctor did that for a couple of years before the tossers actually managed to diagnose me at last.

So long as you have a decent G.P. that's probably the most important ingredient. Of course she cannot and must not exaggerate in her comments, and you wouldn't want her to, but she should be encouraged to state the truth as strongly as possible. After a few years my G.P. even started putting his concluding paragraph in bold type! Whoever reads your doctor's letter will be looking for ways to interpret it so as to minimize the severity of your condition; therefore, the doctor must aim to leave as little wriggle-room as possible, and really lay it on the line. When I was helping my friend in 2015, his doctor was 100% on our side yet his letters were alarmingly vague and left too much room for the D.W.P. to play down the severity of my friend's condition.

Your G.P. is likely to be much more use to you than the Mental Health Department, in my experience. Just keep kicking and screaming until you do get a diagnosis, but you needn't expect anything useful from them after that; the piece of paper with the magic phrase Autism Spectrum Disorder on it is likely to be the only good thing to come from them!

Mountain Goat wrote:
Is just the system should have a way for people like me to access it without needing to ask for help... I mean... What is wrong with an address to send the doctor's notes to? While normally I can cope with using the phone, I have had such a horrendous time in the past trying to claim on the phone in the past. It was the worst phone call I have ever had to deal with in my whole life.

Agreed. Did you know struggling with telephone calls is an A.S.D. thing? Radio 4 told me that, not the so-called A.S.D. specialist team, but since then my local N.H.S. "Autism Service" has actually included it in a leaflet, so now I have documentary evidence. Obviously if it's on Radio 4 it must be true, in any case.

Mountain Goat wrote:
A lady is going to help me soon. She is a friend of the family, and she helps people with the benefits system on behalf of a charity.

Sounds good. Now then, this lady almost certainly knows more than I do. I've only fought and won two cases: my own, and one other person's. So if anything she says contradicts anything I'm about to say, then she is probably correct.

However. You must not hold back when filling up these forms. Total self-abasement and humiliation will be necessary. If the symptom affects you for 50% of the time or more, then it counts. With A.S.D. that's likely to include one hell of a lot of funny little things which you're actually so used to living with that it may not even occur to you to mention them. MENTION THEM ALL! Then get someone who knows you to point out all the other things you've inadvertently omitted...

You are allowed to include continuation sheets. Just make sure you put your name and National Insurance number etc. at the top of each separate sheet. And keep photocopies of EVERYTHING. And don't rely on the pre-paid envelope, send it Recorded Delivery so you can PROVE it was delivered within the deadline: then, if the D.W.P. tries to claim you missed the deadline (this happened to me...), you can shoot their fox.

You know in the murder mystery, when the Policeman says to the suspect: "You do not have to say anything, but it may harm your defence if you do not now mention something on which you later rely in Court"? That applies to D.W.P. forms. If you do end up having to appeal, but whatever you say in your appeal is something you didn't declare on your original form, the D.W.P. will be onto that like a ton of bricks. My friend nearly lost his appeal in 2015 because his sister-in-law had done a lousy job of filling up his form, so I was trying to make bricks without straw (if you see what I mean), pointing out all the A.S.D.-related problems he had which she hadn't put on the original form.

So that is why my last form came to 41,951 words (according to the word count on my computer), plus numerous pages of enclosures (doctor's letters, psychiatric reports etc.); it had to go as a parcel, rather than a Large Letter!

You can, if you have the stomach for it, look up the points-scoring system on the internet and begin drafting what you're going to say in advance (I couldn't have composed 41,951 words, under stress, inside of the four weeks they give you!). However, that's an exercise likely to trigger anxiety and depression, although it did also help me to feel I was doing something constructive: so, the choice is yours, as far as that exercise goes.

Anyway good luck. Others have been where you are now and got through (we may not have enjoyed it, but it is at least possible to survive the experience!).


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07 Oct 2019, 8:02 am

Thanks Raphael.

The lady is coming tomorrow. Her task is to simply help people fill in the forms in a way where they will get what they are supposed to get etc.



Raphael F
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07 Oct 2019, 8:31 am

Good. Her tactics may differ from mine but, again, if they do she could well be right! The thing is to at least be aware that tactics are necessary because the system really is rigged. If you have this lady and your nice doctor, then your chances are as good as they can be.

I began to wonder if I'd have done better to send you a private message (is that what it's called?) rather than fill a screen with advice which only applies to U.K. residents who happen to be in need of some handouts. Then I thought of myself several years ago, frantically surfing the net for hints and tips on those very tactics. I was not a member of this forum then, but I looked at it frequently.

So I decided to carry on and post the whole thing where other people in our position can see it, because you and I and the friend I mentioned can't be the only A.S.D. people in the whole of the U.K. who are struggling with this "Austerity" welfare system and underfunded mental health services. On the one hand it's almost impossible to get a diagnosis. On the other hand, even when you have a diagnosis the welfare system doesn't want to take your difficulties seriously.

And we're supposedly a civilized Western democracy, with the fifth-biggest economy in the world or something?!

Apologies to non-U.K. residents, and apologies too (reluctantly) to anyone who doesn't happen to believe in a welfare state...


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07 Oct 2019, 9:18 am

I would never take a taxi in the UK----unless it's a REAL emergency.



Raphael F
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07 Oct 2019, 2:07 pm

If you don't own a vehicle, or if for whatever reason you are currently unable to drive, then in rural parts of the U.K. a taxi is increasingly the only option, because 50-60 years ago the Conservative Government closed most of the rural railway branch lines (totalling actually an entire third of the nation's railway system), and during the past 10 years another Conservative Government pulled the plug on many of the rural bus services. If the Department for Work & Pensions summons you for a Work Capability Assessment, no excuses will be accepted for non-attendance (nor even for late arrival), and they'll cut you off without a penny. So the expense of a taxi is justified, even if it cripples you in terms of household budget.

Of course, if you DO manage to attend the appointment punctually, having spent money you can't afford in order to be sure of doing so, then the fact that you successfully got yourself to the appointment on time will be used in evidence against your claim that you have trouble leaving the house and you struggle with things like appointments.

I call it Kafkaesque. My doctor calls it Orwellian. A simpler term for the current state of affairs here would be: s**t!

On a more positive note, my chimney has been smoking back for the past 72 hours, yet this evening suddenly I can see from one end of the room to the other and I can breathe through my nose again. So I may be bitter and twisted but I'm not incapable of happy thoughts! Praise Allah and pass the ammunition...


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