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Aspurger's Syndrome

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13 years 4 months ago #35781 by sjc1017
Replied by sjc1017 on topic Re:Aspurger's Syndrome
Is it possible for Faery to email me on This email address is being protected from spambots. You need JavaScript enabled to view it. so we can discuss the assessment process please?
thanks,
Simon

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13 years 4 months ago #36312 by marionf
Replied by marionf on topic Re:Aspurger's Syndrome
Hi Simon,

I have just read your post and I know where you are coming from.

My son is 21 yrs old and has Asperger's Syndrome. Although he is intelligent he also cannot fill in forms and communicate to others about his disability and how it affects his life. Because he can't, I am the one who is appealing against the latest ESA decision and I am also in the middle of filling in his DLA Renewal.

I think you express very well, the deep fears and anxieties you have and I agree with the other members, that you need to get in touch with a Welfare Rights Officer who could give you some assistance with your appeal. Have you thought about contacting the National Autistic Society? They have a WRO and they could perhaps refer you to someone locally who could help.

I know this is a really tough time for you Simon but "hang in there." There are a lot of people who care and who are trying to change the way people with an autistic spectrum disorder are assessed.

With kindest regards.

M'star

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13 years 3 months ago #39398 by sjc1017
Replied by sjc1017 on topic Re:Aspurger's Syndrome
I just got the latest mail from the site and every time there is talk of changes it sends me into a massive state of anxiety. I have heard NOTHING at all about my claim since the new government came to power, so how is this likely to pan-out? How will the nightmare all start? I am not dealing with being re-assessed at all at the moment. I heard that they had started on the news some weeks ago. At some point will I get a letter and begin a process of reassessment? I worry about these changes becuase I worry about getting caught in a cycle of consultation and needing more authority to authenticate my claim. I was diagnosed by a Professor at Addenbrooke's and have been claiming for several years. My worry, reading your latest post is about these companies trying to push me off of benefits, since I can't function at all but if left alone I appear normal since I can cope alone within my routines.

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  • Carole2006
13 years 3 months ago #39460 by Carole2006
Replied by Carole2006 on topic Re:Aspurger's Syndrome
Hi Simon
You mention that you had two PhD qualifications, which must have involved an inordinate amount of research and also taken up a considerable amount of your time. You had plenty of intellectual stimulation too, which I guess you are missing now. I don't mean to make assumptions, I'm just throwing that idea up in the air.
You also know that your rituals and routines are a manifestation of your need to make things better or right.
With regard to the benefits system it is out of your control and you cannot do anything about it until you are contacted (if indeed you are). As you know, most fears and worries are future based and never do happen.
May I suggest that you are displacing you anxiety onto your need to have a resolution with your benefits? You've been diagnosed by an eminent professor and it is highly unlikely that the government assessors will challenge his diagnosis. After all, you've been in academia yourself, it is very rare, almost unheard of, that one clinician will challenge another clinician's prognosis.
What's the subject of your Doctorates?
As this is a benefits forum I don't want to go way off topic. I hope that you can find something to occupy your mind which is worthy of your experience and passion. Maybe the OU could come up with some funding for research?

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  • originaldave
13 years 3 months ago #39516 by originaldave
Replied by originaldave on topic Re:Aspurger's Syndrome
Simon wrote:

I just got the latest mail from the site and every time there is talk of changes it sends me into a massive state of anxiety. I have heard NOTHING at all about my claim since the new government came to power, so how is this likely to pan-out? How will the nightmare all start? I am not dealing with being re-assessed at all at the moment. I heard that they had started on the news some weeks ago. At some point will I get a letter and begin a process of reassessment? I worry about these changes becuase I worry about getting caught in a cycle of consultation and needing more authority to authenticate my claim. I was diagnosed by a Professor at Addenbrooke's and have been claiming for several years. My worry, reading your latest post is about these companies trying to push me off of benefits, since I can't function at all but if left alone I appear normal since I can cope alone within my routines.

Your biggest problem is you can't manage change I doubt you could manage if some one put all your clothes in different draws so this must be doing your head in.

Ask the team treating you if you can take part in the CBT trials being carried out in the UK to help people like yourself manage when change cant be helped

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