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Have autism, look normal, scared of ESA assessment

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5 years 8 months ago #236253 by Anne Lee
I'm so scared. I don't know what to do. I have a new ESA form to fill in to be reassessed, and I can't face it again, as over the years it has been a nightmare.
I've had problems all my life. I was adopted and my adoptive parents were abusive to me. I had problems holding my knife and fork properly as a child. My adoptive father made me sit in front of him every meal time, and if I didn't sit a certain way and hold my knife and fork a certain way he would start hitting me. I now know that it's because I have Asperger's and dyspraxia, so not good with coordination. My mother would push food in my face if I couldn't eat certain things because of sensitivity with food, and I still have PTSD and flashbacks from that.
I've had so many problems in my life from having undiagnosed autism, and if I didn't try to look normal I would be bullied, but if I look normal at the ESA assessment they will hold it against me to not have enough points.
One of my problems was when I split from my husband who was in the military, and council wouldn't help with housing as being in the military isn't classed as having local connections, I ended up in the sex industry just so I could have a deposit and rent in advance so wouldn't be on the streets.
I was eventually signed off work with anxiety after an assessment by a Doctor at the Job Centre. Then when Tories came into power I had to have another assessment with a nurse who virtually told me there and then without a proper medical I would be put on Job Seekers Allowance.
Then my nightmare began. I had to apply for a certain amount of unsuitable jobs each week or threatened about having benefits taken away, and the stress was making my symptoms worse. I always had tics, but they were becoming uncontrollable, where I couldn't stop them when trying to sleep. I was sent on worse and worse work programmes, where I was just humiliated and made to feel suicidal. Then I had to be completely signed off work again as they made me so mentally ill.
I'm scared as it doesn't look as if there's anything wrong with me, and they hold that against you on assessments. They wrote on one assessment that I looked clean and tidy. They turned me down for ESA after I was diagnosed with Asperger's, and I had to spend months of stress appealing, which I won. I've wasted so many years of my life constantly appealing their decisions, and not sure I can cope with any more. I know that whatever I say on the assessment, they will twist it to not having enough points.
I used to have a support worker from a charity, but the council took away their funding so I will have to go on my own, and if you go on your own they hold that against you.
I was doing a useful course that could help me get a job in quiet surroundings suitable for my condition, but had to give it up because of stress from useless job centre work programmes.
It would be better for me if they left me alone to do useful courses and voluntary work, to see what I can do and for experience, as the job centre just make me feel suicidal, but I think that's what they want.
I live in a flat where the man above keeps harassing me and my landlord just takes his side as he's sexist and thinks he can talk to me like an idiot, but I can't afford to move. Now I will be more poor if they change my benefits and so no hope of ever moving.
One of the problems of autism is not looking how you feel, and another is not being able to explain how you feel, but if I don't explain or look properly then they won't give me enough points.

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5 years 8 months ago #236255 by BIS
Hi S

Welcome to the forum, you might want to have a look at the following FAQ which explains where everything is

Welcome to Benefits and Work

In case you are not aware, your real name appears to be showing in the forum, if you want to change this then follow the instructions in the following FAQ

My full name is showing, how can I stop it?


I understand your fear of looking 'normal' - it is something that many people have been judged for at assessments. Unfortunately, there's little you can do about the prejudice of some assessors in this area. What you need to do is focus on what you can do to give yourself the best chance of success.

1) Have a look at our guides for completing the ESA form. Make sure you give plenty of detail of any difficulties that you have related to the ESA criteria. I would also include the fact that you one a previous appeal.

www.benefitsandwork.co.uk/help-for-claimants/esa1

2) Finding medical evidence - Use any letters or reports that you have from medical professionals. Consider asking your GP for a letter - some give them - some don't. You can always make a Subject Access Request from your GP's for access to your medical records and then include anything that is relevant. You need to ask at your GP's reception for this and there may be a cost attached.

3) Finding help to complete your form - see if you can get help from your local Citizen's Advice Bureau or any other charity in your area. You will need to google this and see if there are any suitable free services available, including anyone to attend an assessment with you.

BIS

Nothing on this board constitutes legal advice - always consult a professional about specific problems

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5 years 8 months ago #236309 by Thistlelass
Replied by Thistlelass on topic Have autism, look normal, scared of ESA assessment
Hi, I can currently relate as my 39 year old son is going through the review process for PIP. He has Dyspraxia which forms the main basis for the current provision of his standard rate care and mobility. He has only recently been diagnosed as having an Intellectual Disability and Autism. This was not diagnosed when he was a child. He had DLA from around the age of 10 years. He has never worked and has struggled all along to achieve and maintain independence. It is clear there is a problem but an assessor recently returned a report declaring he has no Intellectual disability - but this was clearly diagnosed by a much more highly qualified, experienced Clinical Psychologist! I despair for the future and a system which leaves us to stress and argue
with idiots. I suspect it is emotional support you need at the moment as much as anything else. I too have my own PIP review to prepare over next couple of weeks. It helps to me to find someone that I can report back my progress to - that I have broken down the 'research' and collating work into sections and making progress with it. Would it help in any way to seek support from an Advocacy group if this is going to an Appeal? Does anyone know if this is allowed? Good luck! Hey maybe we willget lucky and they will start treating us like human beings x

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5 years 8 months ago #236569 by Anne Lee
I know how to fill in a form. Just that I know that no matter what I say, they will twist things to me not having enough points. I'm the same as I was before, when they didn't give me enough points and I had to appeal the ESA decision after the Job Centre caused me to have a breakdown from all the useless work programmes designed to punish me.
I think I would be treated better if I was a murderer than having autism.
Should I mention how when I wasn't receiving support and didn't have enough money, I have been vulnerable to become involved in the s ex industry to survive, or not mention that?

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5 years 8 months ago #236570 by Anne Lee
I have really bad dyspraxia, but I wasn't sure if it could be classed as points? I thought that as they don't give enough points for people who can hardly walk, then being clumsy and uncoordinated wouldn't be classed as important for them? Should I put about dyspraxia on the physical problems part?
I had to appeal getting PIP in the court, and still they only gave me low rate of daily living and nothing for mobility, even though I get anxious on public transport because of sensory issues.
I wanted to appeal to have mobility, but it took over a year of stress appealing just to have daily living, and I couldn't take any more.

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5 years 8 months ago #236571 by Anne Lee

Thistlelass wrote: Would it help in any way to seek support from an Advocacy group if this is going to an Appeal? Does anyone know if this is allowed? Good luck! Hey maybe we will get lucky and they will start treating us like human beings x


I don't know anything about an Advocacy group. What do they do and how would I find about about how to contact them?

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