• Replies 5 replies
  • Subscribers 28 subscribers
  • Views 1591 views
  • Users 0 members are here
Options
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Personal Independence Payment and Limited Capability for Work?

Rebecca Jane

Hi everyone, I've just joined for advice, my name is Rebecca Jane or 'RJ' and within the last year, I've learned that I am autistic. I have a provisional diagnosis right now that's due to be confirmed in April, but I first suspected ASD when I had a class on it during my first year of university.

Trigger warning / mention of suicidal thoughts.

Now, I've always struggled, I left school early, had suicidal thoughts, didn't want to talk to a doctor about it, picked myself up and tried college and was successful, never in friendships but I did reach a few qualifications, enough to get me to university, but I skipped many classes and got through it alone by commuting and not living in student halls and not attending on days when I couldn't handle it. Flash forward and I tried working, I never coped in working environments, the lights, the chatter, the overwhelming feelings I felt, I thought were normal, I just thought that everyone experienced burnout, I've left multiple jobs because I can't fit the neurotypical workplace and before my referral for autism, I was diagnosed with anxiety and depression. I've been bullied out of work and had my self esteem reach zero, now it's probably in the minus figures.

I've been on universal credit since a failed attempt at a master's in psychology, after switching from journalism in September, and after a few months of struggling and trying to apply, I finally opened up to my work coach and started to pursue my autism diagnosis, I have one final appointment left for my official diagnosis which I feel has helped me understand myself so much more, and my limitations, and I know, that my mental state right now is not good enough to work.

My work coach also encouraged me to apply for limited capability for work and Personal Independence Payment (PIP) for the help that I need on a daily basis, e.g. not prioritising food, not going outside alone, my routine, etc.

The forms are here and of course I've read widely about people being refused and going to tribunals over the phone because of covid-19 and still being turned down, and my brain is just completely overwhelmed with worry that, I'm not good enough for work, and I'm not even good enough to get help for being unfit for work right now that would ultimately set me up to have some independence to try to fit into society again.

I've got an incredible mum who, since the pandemic is performing the roles of a carer, and is filling in the forms for me, but here I am, 30 next year and in bits because I don't feel like I'll be told yes, and after being turned down or failing so often, to be told I don't even qualify for help would probably see me feeling suicidal, but I know how tough the DWP can be.

Does anyone have any success stories for a late autism diagnosis and mental health difficulties when applying for PIP? I also struggle to talk on the phone but the DWP probably will force me to.

I'm so sorry if this is all a bundle of jumbled thoughts.

  • in reply to Cookiesmum1986

    Hi, I just wanted to say that it's not quite true if you have a driving licence that you will not be able to get a mobility award. I have a driving licence and get the mobility component based on my autism and mental health issues.

  • Hello RJ, I am in my mid forties. Diagnosed two years a go. I managed to get PIP on my first try. I did this by having both my psychologist and psychiatrist produce letters explaining how I was affected by my mental health and autism. I also went to see Equal Lives and they helped me filll in the form. They completed the form in line with the scoring system the PIP people use. This can be found on The Equal Lives PIP page.

    I also put down each prescribed drug that I am on,  more tangible evidence. 

    My main ‘theme’ of the form was my very bad memory and Shutdowns. I put down that I needed my wife to push me, prod me and (also with electronic help) remind me to do basic stuff. I didn’t compete or over embellish this for every question. The Equal Lives person said this will make my form look more genuine. 

    I got 11 points on the daily living and 8 points on the mobility questions. This then also qualified me for a free bus pass.

    I hope you will succeed next time. Just search equal lives and you should find them. They were only available in Norfolk and Suffolk when I used them.

  • in reply to Cookiesmum1986
    Cookiesmum1986 said:
    " and then you'll find they twist the truth

    I agree. They do twist the truth at every opportunity.

    At my face to face assessment I was asked about my  level of education, despite there being no questions about education on the PIP form.

    Unfortunately, I answered trufully that I had a degree.  This was used as conclusive proof in the conclusion that I was perfectly normal with no personal problems.

  • I used to volunteer for the Scottish citizens advice. A lot of people would be advised to apply for PIP/ESA by their job coaches and it's basically to get you off their backs. 

    In terms of PIP, if you drive then you won't get any sort of award for mobility as the DWP define psychological distress as suffering from melt downs so severe that you can't hold a license.

    You might pick up points for daily living based on your need for prompting but expect to need a very experienced benefits advisor filling out your form and you'll probably get asked things like "how did you cope with X at university" and then you'll find they twist the truth so that you get less than someone with knowledge of autism has.

    You'll also need medical evidence or other evidence to back up what you say in the forms. If someone helps look after you they can write a diary/statement.

  • Get help from professionals such as the Citizens advice bureau in filling out the form.

    I got zero points in my PIP application despite having it filled in by the money advice service, who were also the people who advised me to apply for it.  However, my job centre work coach laughed in my face when I told her I was applying for PIP, she told me that I didn't stand a chance of getting it.