New here, desperate for ESA help! Have Asperger's/ADHD

[crazygirl90]

Hi everyone!

 

I really need help/advice. I have Asperger's Syndrome and ADHD. I went on ESA in April 2009, after leaving my old job due to bad management and favouritism. I did try a new job but I just couldn't deal with the changes, the new people, the new rules etc

I didn't have a medical until October! It was ridiculous, wasn't really asked relevant questions, I was asked stupid things like do I watch TV and do I have any pets! It seemed to be over pretty quickly and the guy spent more time typing on his stupid computer than actually finding out anything important about me!

Then I had to wait until February for the results. My area seems to be pretty bad with this (I'm in Surrey and the centre in Hastings is the one that deals with my claim, everyone is being advised to complain about the long waiting!). I scored 12 points, I was shocked to see that the areas I DO have difficulties with had 0 points. And apparently I have no problems with change, even though my Aspergers diagnosis report clearly states that I do! So I spent days typing an appeal letter, going through all my difficulties in detail, I can't tell you how much effort I put into it. And we'd recently had one of our cats put to sleep, which was very upsetting, and then we had more bad news, about my brother, I won't go into detail but it was bad news! I was so sure the appeal would be a success, my mum checked everything for me and said it was brilliant.

But no. I got a load of paperwork back saying they agreed with the original decision, and that it had gone to the Tribunals Service. With the paperwork there was a copy of the questionnaire I filled in. A lot of the questions I would score points on I'd scored 0 on, because I'd answered that I didn't have difficulty. It's nearly a year since I filled that out so I don't remember what I was thinking while filling it out! But I do remember finding it confusing and apart from the space at the end for additional info, there wasn't any questions where I could really explain my difficulties/anything that related to me, apart from one or two. Maybe I didn't understand the questions at the time, maybe I felt too embarassed to be honest. I really don't know. It wouldn't be the first time I've done something wrong cos I've been to embarassed to be honest. It sounds stupid now, looking back on it, but it's a problem I have. So basically, I screwed up the questionnaire without realising at the time.

However, when I phoned jobcentreplus, they said the decision is based purely on the medical examination, the questionnaire is just a guide??

 

So I sent the stuff back to the Tribunals Service. I'm waiting for a date. Atm I don't have a representative, I don't know who I can use. I don't have any more medical evidence I can give. I don't even know what else I can say to them. I put every effort into the appeal, I could cry.

Then I wonder if, without realising it, I'm making out I have problems when I don't? But I'm not! I don't want to be out of work, I'm not being lazy. I genuinely have difficulty. I got fired from my first job because I wasn't smiling and communicating enough to the customers!

 

I don't even know what else to say in this post, hardly anyone seems to understand autistic spectrum disorders and how much people with them can struggle.

 

But has anyone else here been though the same? What can I do at the tribunal, seeing as I have no other evidence to give, don't know what else I can say to convince them, and who should I have as a representative?

 

Also, if I lose the tribunal, is that it? Is that THE absolute last chance? If it is, I assume my ESA will stop altogether, so I'll have to go on JSA, then they'll have a go at me for not applying for jobs, so I'll tell them I'm not a normal jobseeker, they'll tell me to go on ESA, then I'll explain that I've been refused...then what?!

 

And another little worry...they keep saying the money (if the appeal is successful) will be backdated to week 14 of when I first claimed...so around July last year! That is a lot of backdated pay...they won't get funny and try and give me less of it will they? It seems too good to be true that I'll get that much money in one go!

 

Someone please help me!!!

 

EDIT: Just to add, for anyone wondering. Yes I have worked before. After my first job I was fired from I worked at Thorpe Park in 07-08. Theme parks is a major obsession/special interest of mine, and when I am involved in such an interest, I am in my comfort zone, my anxiety drops, I am more relaxed, more focused...so I could cope ok. I did still have big difficulty making friends, I had people making fun of me, it wasn't easy but I coped well enough. As i said, the bad management etc was so much I ended up hating it and was glad to not go back in 09.

So the only jobs I would be able to cope in would be ones that involve a special interest, because it doesn't feel as new and as much of a change, which is a major difficulty I have. I hope that makes sense. I am NOT being fussy or lazy. If anyone here has an autistic spectrum disorder or knows about them, I'm sure they will understand what I am saying.

Edited June 12, 2010 by crazygirl90
Extra info

[jack1966]

is ADHD a condition that one grows out of ? i dont know, just asking.

 

seemingly no-one of my generation suffered such ailments.

 

as for Asperger's Syndrome, isn't everyone effected some way or other, after all we are all on the autism scale.

[crazygirl90]

Some people grow out of ADHD, but it's not that which is causing difficulties, it's the Aspergers, but I thought i'd mention it anyway.

 

You could argue that maybe we are all affected one way or another, but to actually be diagnosed is a different story.

 

Sorry but I came on here for advice, not for people to question if I actually have a health condition.

[ErikaPNP]

With regard to representation, there is a Welfare Rights Unit attached to the CAB in Surrey. If your appeal is successsul they wouldn't get funny and try to give you less of what you are owed, no. They can't do that. If your appeal isn't successful, you can reclaim ESA.

 

I've checked the National Austistic Society but unfortunately they currently don't provide Welfare Representation. Shame, really because as you say a lot of people don't understand ASD.

 

One of our members, Bookworm, has a thread on the go where she explains how she successfully appealed a DLA decision on her child who has ASD here http://www.consumeractiongroup.co.uk/forum/special-needs-disability-etc/260047-dla-high-rate-mobility.html

 

I know you are not a child and this is not a DLA claim however you might find the information helpful.

 

Further, honeybee has written a tribunal template for ESA/IB and provided an explanation from the claimant's point of view of the tribunal experience. This may also help. http://www.consumeractiongroup.co.uk/forum/benefits-tax-credits-minimum/251737-going-tribunal-some-useful.html

[PriorityOne]

is ADHD a condition that one grows out of ? i dont know, just asking.

 

seemingly no-one of my generation suffered such ailments.

 

as for Asperger's Syndrome, isn't everyone effected some way or other, after all we are all on the autism scale.

 

 

ADHD is a social disorder. Asperger's is a developmental disorder. I agree with you that your/my generation did not seem to suffer from such conditions and ADHD in particular has boomed over the past few years....

 

It begs the question.... why?

[loan_ranger]

Hi crazygirl90, big welcome to the forums from someone else with AS, I understand perfectly where you're coming from re. how Asperger's affects ability to work. AS is a neurological difference which we are born with and is without remission, the ADHD can be symptomatic of AS as can be other co-morbid conditions e.g. obsessive-compulsiveness, depression, bi-polar disorder, dyslexia and a few others too many to mention, therefore I wouldn't see much prospect for someone with AS to "grow out of it".

 

I'll be back in a while with some advice,

 

Kindest regards,

Paul.

[honeybee13]

ADHD is a social disorder. Asperger's is a developmental disorder. I agree with you that your/my generation did not seem to suffer from such conditions and ADHD in particular has boomed over the past few years....

 

It begs the question.... why?

 

Hi Priority one. Could it be because diagnosis methods have changed and different conditions are better understood now?

 

I have no qualifications for any of this, just mentioning what I've heard anecdotally.

 

HB

[PriorityOne]

Hi Priority one. Could it be because diagnosis methods have changed and different conditions are better understood now?

 

I have no qualifications for any of this, just mentioning what I've heard anecdotally.

 

HB

 

It depends on what you mean by "diagnose" and who is doing the diagnosing. It's not always done by GPs... ADHD is a social disorder, yet people are often prescribed medication for it on the basis of psychologist's reports.

 

That's never sat right with me... particularly where children are concerned, but this is probably best left to a different thread as I don't want to upset/offend/disrespect OP.

 

[loan_ranger]

Hi again CG, I saw this good advice posted today, I think it's worth your while to read it: http://www.consumeractiongroup.co.uk/forum/benefits-tax-credits-minimum/263012-esa-disability-etc-2.html#post2977261

The appeals are seldom, if ever, revised but the tribunal is much fairer and provided that you send them plenty of good supporting evidence the prospects are good for having your ESA re-instated.

[honeybee13]

Hello crazygirl. It's not your fault it didn't go your way, it's the system. In fact for most people here, 12 is an amazing score.

 

If I might say, I think you will need to regroup once you find out when your tribunal is, which could be some months away. In the meantime, you have Loan Ranger who understands your psychological problem and others here who understand the tribunal process, including myself, but not for Aspergers.

 

Try to take it easy for now and we'll help as much as we can.

 

HB x

Edited June 12, 2010 by honeybee13
grammar.

[crazygirl90]

Thank you loan_ranger and honeybee13

[loan_ranger]

Hi again crazygirl90, I've not had to do an ESA50 yet, my last time 26 months ago I did the old I.B.50. I realise that it's too late now that you've had the ATOS medical, but I went all out to avoid the med exam by asking for a referral to a consultant shrink who consequently confirmed my self-diagnosis, being able to name him on the form helped no end.

Then I looked at the mental health descriptors and points and in conjunction with reading the wikipedia page on AS (as a memory jogger), I wrote 3 pages of additional info which I sent with the form. As a result they signed me off another 2 years without me having to attend a med exam.

 

Although it's too late now for your ESA50, you may be able to make use of this information to help you prepare for the tribunal.

 

Employment and support allowance activities,descriptors and points

 

Click on the link below to download the factsheet.

 

• employment and support allowance activities,descriptors and points - Factsheet F33 (pdf format)
  

Note: for pdf files you will need to download adobe acrobat reader. To convert the pdf to alternative formats or for more information on accessibility go to access adobe.

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Asperger syndrome

 

From Wikipedia, the free encyclopedia

 

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Kindest regards,

Paul.

[loan_ranger]

If you haven't already, please have a look over to this thread too.

http://www.consumeractiongroup.co.uk/forum/benefits-tax-credits-minimum/263516-how-important-esa50-supporting.html

 

Kindest regards,

Paul.

[loan_ranger]

seemingly no-one of my generation suffered such ailments

ADHD is a social disorder. Asperger's is a developmental disorder. I agree with you that your/my generation did not seem to suffer from such conditions and ADHD in particular has boomed over the past few years....

 

It begs the question.... why?

AS was un-recognised outside of Hans Asperger's native Austria until fifty years later e.g. AS became a standard diagnosis in 1992, when it was included in the tenth edition of the World Health Organization’s diagnostic manual, International Classification of Diseases ( ICD-10 ); in 1994, it was added to the fourth edition of the American Psychiatric Association 's diagnostic reference, Diagnostic and Statistical Manual of Mental Disorders ( DSM-IV )

 

The OP came here for advice, not off-topic conjecture, thanks.

[PriorityOne]

AS was un-recognised outside of Hans Asperger's native Austria until fifty years later e.g. AS became a standard diagnosis in 1992, when it was included in the tenth edition of the World Health Organization’s diagnostic manual, International Classification of Diseases ( ICD-10 ); in 1994, it was added to the fourth edition of the American Psychiatric Association 's diagnostic reference, Diagnostic and Statistical Manual of Mental Disorders ( DSM-IV )

 

The OP came here for advice, not off-topic conjecture, thanks.

 

My comment was in connection with ADHD.... and yes, I know about the DSM-IV, thank you.... If you re-read my last post, I did say I was not going to comment further about this on OPs thread...

[loan_ranger]

ADHD is a social disorder. Asperger's is a developmental disorder. I agree with you that your/my generation did not seem to suffer from such conditions and ADHD in particular has boomed over the past few years....

 

It begs the question.... why?

Implying?

I was answering the bit of your quote which I've underlined.

[PriorityOne]

Implying?

I was answering the bit of your quote which I've underlined.

 

 

Implying precisely what I said.... which is why I said it.

 

I didn't ask for you to agree with it and don't care whether you do or not, to be honest.

[honeybee13]

Guys, is this really helping our OP please?

 

PriorityOne, I'm a bit surprised to see a senior cagger in a slanging match here if you don't mind my saying. I know I'm only a minnow on the site, but all this is beginning to upset me and I can't imagine what poor crazygirl, who hasn't been seen today as far as I can make out, thinks of this.

 

I apologise for starting to sound like a moderator, but I can always call one....

 

HB

[PriorityOne]

Guys, is this really helping our OP please?

 

PriorityOne, I'm a bit surprised to see a senior cagger in a slanging match here if you don't mind my saying. I know I'm only a minnow on the site, but all this is beginning to upset me and I can't imagine what poor crazygirl, who hasn't been seen today as far as I can make out, thinks of this.

 

I apologise for starting to sound like a moderator, but I can always call one....

 

HB

 

I have no intention of turning this into a slanging match or upsetting anyone... which is why I'm refraining from getting into the subject matter further. I've said this twice already now. Loan Ranger seems to have the problem here, sorry.

[crazygirl90]

I'm still here!

 

I have another issue/worry about this tribunal, and it's hard to make sense of it in my head, so I hope it makes sense in this post!

When I first did the questionnaire, and at the medical, I didn't go into great detail about my difficulties, due to embarrassment, but also because I assumed they would know enough about ASDs and mental health to understand my case. So when I appealed, I mentioned my difficulties which I hadn't informed them about before, and in detail. And I made a point of explaining why I did not go into so much detail in the first place.

Reading my appeal stuff again, and thinking about what else I can say, I have thought of a lot more difficulties I have, which affect my life daily, that I didn't mention. At the time of appealing, I thought I'd mentioned everything but there is a lot more actually.

How do I explain this without it looking dodgy? Every time, I'm adding more information about my condition, they might think I'm making it up as I go along. But I'm not. But I don't even understand myself how I could have forgotten to mention everything when I put so much effort into the appeal! Does that make sense? As I said in my original post, me and my family did have a lot to go through at the time, which didn't help. And when I really need to remember things and concentrate, I actually get worse and it makes it harder. And I felt under pressure to hurry up and send it off, because I was very concerned that it would take months to hear the decision, and the fact that I have been dealing with this for so long and I was sick of battling and it taking over my life.

 

So I'm just worried, I don't want them thinking "Well that's handy, she forgot to mention these difficulties before and she's using family issues as an excuse!"

 

I don't have any other medical evidence to back up my claim. I was diagnosed when I was 17 at CAMHS, I'm not in contact with them anymore and I don't feel confident on the phone. My mum could call for me, but it seems so long since I was involved with them, I'd feel like I'm pestering them. And I don't have much confidence in them, the diagnosis report was quite bad and there was a huge waiting list. And they didn't seem very professional.

My local mental health team I'm with, well they keep changing staff so I've had different psychiatrists, so none of them know me well enough so I don't know how much they can help.

My GP who I've had since I was a child retired a few months ago, so that's no good either!

What if they say they need more medical evidence to make a decision?

 

I will go to my local CAB tomorrow to see what help/advice they can give me.

[honeybee13]

Hello there CG, we hadn't forgotten you .

 

I'm sure advice will turn up shortly and I hope Loan Ranger has some comments, because he is very likely to understand how you feel and think.

 

Try to stop worrying, you could make this more complicated than it is. Your tribunal could be months away, so take advice and read up. You seem to be a detail person to me, so you could be very knowledgeable by the time your tribunal happens.

 

People will be along to advise you on the best way to add info. I'm not sure, so I won't try to suggest anything.

 

HB x

[ANDYANDFLO]

I'm still here!

 

I have another issue/worry about this tribunal, and it's hard to make sense of it in my head, so I hope it makes sense in this post!

When I first did the questionnaire, and at the medical, I didn't go into great detail about my difficulties, due to embarrassment, but also because I assumed they would know enough about ASDs and mental health to understand my case. So when I appealed, I mentioned my difficulties which I hadn't informed them about before, and in detail. And I made a point of explaining why I did not go into so much detail in the first place.

Reading my appeal stuff again, and thinking about what else I can say, I have thought of a lot more difficulties I have, which affect my life daily, that I didn't mention. At the time of appealing, I thought I'd mentioned everything but there is a lot more actually.

How do I explain this without it looking dodgy? Every time, I'm adding more information about my condition, they might think I'm making it up as I go along. But I'm not. But I don't even understand myself how I could have forgotten to mention everything when I put so much effort into the appeal! Does that make sense? As I said in my original post, me and my family did have a lot to go through at the time, which didn't help. And when I really need to remember things and concentrate, I actually get worse and it makes it harder. And I felt under pressure to hurry up and send it off, because I was very concerned that it would take months to hear the decision, and the fact that I have been dealing with this for so long and I was sick of battling and it taking over my life.

 

So I'm just worried, I don't want them thinking "Well that's handy, she forgot to mention these difficulties before and she's using family issues as an excuse!"

 

I don't have any other medical evidence to back up my claim. I was diagnosed when I was 17 at CAMHS, I'm not in contact with them anymore and I don't feel confident on the phone. My mum could call for me, but it seems so long since I was involved with them, I'd feel like I'm pestering them. And I don't have much confidence in them, the diagnosis report was quite bad and there was a huge waiting list. And they didn't seem very professional.

My local mental health team I'm with, well they keep changing staff so I've had different psychiatrists, so none of them know me well enough so I don't know how much they can help.

My GP who I've had since I was a child retired a few months ago, so that's no good either!

What if they say they need more medical evidence to make a decision?

 

I will go to my local CAB tomorrow to see what help/advice they can give me.

 

Hi, you and me too are in the same boat - so to speak.

I placed a posting a while back:

 

ESA Appeal - illness not disclosed on ESA50

 

I left out a great deal in my claim, mostly because it hurt too much to face it.

Edited June 13, 2010 by ANDYANDFLO

[loan_ranger]

Hi CG90,

 

send them all the supporting statements and evidence you can get, I don't think it will do any good at the appeal, but they should be valued at the tribunal along with any more stuff you can send. Scan/copy everything you send because they can mysteriously "lose" quite a bit.

 

Don't worry about their perception of this (remembering stuff and sending it afterwards) as being "dodgy", each IB50 has caused me both anxiety and the gamut of emotions more commonly associated with bereavement, memory and concentration hadn't much of a chance, I only coped by taking things slowly.

"speedfreak" offers this good advice which rings true:

I'd like to add that anybody with a mental health condition really should think about having their forms filled in for them by a 3rd party. Preferably with help from a specialist disability organisation or welfare rights.

 

Whilst the DLA forms have a quite a lot of scope and opportunity for you to explain things the ESA forms are just too subjective and narrow to get a full picture.

 

Often the condition due to it's nature has a massive effect on how they view themselves and the issues they face. This has a knock on effect on how they answer the questions and fill in the forms. The DWP take this view too.

On the subject of obtaining evidence:

I don't have any other medical evidence to back up my claim. I was diagnosed when I was 17 at CAMHS, I'm not in contact with them anymore and I don't feel confident on the phone. My mum could call for me, but it seems so long since I was involved with them, I'd feel like I'm pestering them. And I don't have much confidence in them, the diagnosis report was quite bad and there was a huge waiting list. And they didn't seem very professional.

My local mental health team I'm with, well they keep changing staff so I've had different psychiatrists, so none of them know me well enough so I don't know how much they can help.

My GP who I've had since I was a child retired a few months ago, so that's no good either!

What if they say they need more medical evidence to make a decision?

I think your GP should be first on your list as your GP has access to your medical history and notes. Some GPs are nice and won't charge for writing letters on your behalf, however others may charge upwards of £30 for even a very brief letter because this activity isn't remunerated in the NHS contract, i.e. it comes under "private practice". It wouldn't hurt to write or phone the CMHT for a Psych's letter, but then again charges could be applied. I know what you mean about different staff each time, "tell me about it!" - I've been supporting my severely mentally ill Niece and she's had 3 different 'shrinks' in the last 18 months, and don't get me started on her "here today, gone tomorrow" CPNs and their many appointment 'no shows'.

 

Do please keep us informed about how you are getting along and try not to let things get you down otherwise it's they who will have the upper hand, we can't have that.

 

Best regards,

Paul.

[crazygirl90]

Thank you to everyone who has responded

 

I think I will go to the doctors and see the one I have been seeing since my actual GP left. The one I see is not my new, assigned GP, but at our surgery you can get an appointment with anyone. Plus she is the one I always get medical certificates from (since I started ESA in April last year) and she is friendly and understanding. I'll probably get my mum to go with me, as she is very good at explaining things on my behalf so I shouldn't feel so nervous then. I don't mind if I have to pay a charge, I just want every chance of this tribunal being successful!

 

I looked back on the questionnaire (got a copy of it sent back when they refused my appeal, amidst a big wad of paperwork rambling on about their decision) and I am so shocked at how little I mentioned about my Aspergers! I'm kicking myself but at the time, as I said, it didn't seem necessary to go into great detail as I assumed the diagnosis report I sent with it would answer the questions instead, and it was embarrassing etc.

 

Another person who may be able to help me is a lady I see, in relation to the jobcentre. I'm not sure what to call her, like an advisor or whatever. She works for a group called ESRA, who help people on these benefits to get back into work at their own pace etc, and they're connected to the Jobcentre. Hopefully she'll be able to write something on my behalf too, but she said she's had so many people phoning up in tears because they've lost their first appeal, so she may have quite a few people to deal with!

She advised me and mum to write a complaint to the DWP, firstly about the poor way the whole process works (and fails!) and also about how long it took to hear (4 months!). She's been advising everyone to do it, I hope they all do and that something gets done but I also can't help thinking we're going to be stuck with this rubbish system forever! I really hope not, hopefully the increasing awareness of mental health will have an effect, just wish it could happen right now!

[Nicolas01]

Understanding how children with Asperger's see and relate to the world around them is important. It helps others to deal with the unique challenges these children face and gives them the knowledge to help the children learn and work things out. Many of these children have very sensitive taste and smell receptors and they find themselves falling back on them.