Autistic adult working full-time, awarded 0 points for PIP – looking for advice and experiences

GundamSapian said:

apologies for the long post!

No need to apologise - if autistics are, 'not allowed' lengthy explanations then who is!! Who else provides the necessary detail to initiate change?

This was my experience too. My assessor was a woman in a wheelchair who gave out the vibe, 'you are not disabled enough.' It was a humiliating experience which I will never put myself through again. Like you, my problems are not physical actions but the psychology of getting through - the PIP application does not allow for this and needs to be altered. My 45 year working life was fraught with difficulties and emotional issues, dodging difficult situations, such that 'simple' day to day necessaries became difficult. I expect this is so for many of us - there ought to be another version of PIP to cater for such situations. Life was a struggle, but less so now I have state and private pensions - I'm better of than I've ever been - physically, mentally and financially. It might be a long way off, but at least you might be able to look forward to retirement.

I certainly do, and from other people's stories online this seems to be pretty much the norm unfortunately 

Second reply, as I missed part of your request, I'm already blaming the 'tism for that.  For supporting evidence I have very little as I have no family and 1 friend that lives about 700 miles away. So the best I could do was to provide the results of my autism and alexithymia assessment.  My doctors medical history is sparse because I find them very little use unless you just want another round of anxiety meds. 

Apologies for the late reply.  I scored 2 on the ability to socialise and interact with people. Should be way higher than that.

And youre right about it being a fight to get any help.  I wrote on my tribunal application how I felt offended at such a low score as I felt the low score represented that I face no issues with daily life, which is definitely not the case. And that whilst someone without autism may intellectually understand it, they will never know what it's like; and rather frustratingly, if you have autism you struggle to be able to explain it to someone neurological. Plus the whole form was obviously written to deal with physical ailments,  rather than mental/personality. 

Thanks for your support,  I wish you an easier road than mine has been so far.

did you feel as if they were deliberately delaying the process, in the first and second assessments and the time taken to get to tribunal?

Thanks very much for sharing these! I've had a look through both, and the second one in particular is really relevant to some of the difficulties I've experienced with autism and dyslexia.

I'm currently finalising my Mandatory Reconsideration, so I'll go through these properly and see if there's anything useful I've overlooked.

Really appreciate you taking the time to post them! :)

Sounds like we're in very similar situations then! I also received 0 points across the board and I'm currently preparing my Mandatory Reconsideration, which I'm hoping to submit the additional evidence for tomorrow.

If you don't mind me asking, which activity did they award you the 2 points for at MR? And did you submit any additional evidence or supporting statements?

It's frustrating how long the whole process takes eps when so many tank the piss when claiming benifits, especially when you've already had to fight to get this far.

Fingers crossed your tribunal goes well and you finally get the outcome you're hoping for! :)

I'm in exactly the same situation,  got zero points on the assessment,  got 2 points on the mandatory reconsideration and now waiting on the tribunal. Naturally the DWP are now 11 days past their deadline to send their information to the tribunal.  So God knows how long thats going to be 

I am sorry if this has happened to you. When I did my forms I used these guides below which I found helpful. A friend told me before you have to let them know about your bad days as well and the ratio of those can be useful..

https://mentalhealthandmoneyadvice.org/welfare-benefits/pip-mental-health-guide/help-with-your-pip-claim/how-to-fill-in-the-pip-form/

This one is aimed at learning disabilities and autism.

https://www.familiesinfocusessex.org.uk/wp-content/uploads/2023/01/PIP-helpful-phrases.pdf

I assume you have  to be carefully and not word something in a wya that could trip you up to for example they could use it against you in the future I. E they interprate bathing diffuclries as you need someone there at all times when you ment you need promoting and they could use it against you and Aya well yih live alien and basicly try calling fraudulent

Thanks again for taking the time to explain your experience. I really appreciate it. :)

It's interesting that they focused so heavily on what you could physically do while seemingly overlooking the mental distress involved. That's something I've been concerned about with my own assessment.

I work full-time, drive, own my home and live alone. I'm also rather horribly single, with no friends or family living close by, so I have practically no support locally. I explained all of this in my original application and during the assessment. I do manage to get by, but sometimes only just, and it comes at a considerable mental, physical and emotional cost. I still rely heavily on my parents for advice and reassurance, even though they live hours away.

I'm hoping the Mandatory Reconsideration will address some of this, especially with the additional evidence I'm gathering from my parents.

I'll definitely contact Citizens Advice and see if there's a local adult autism support service that could offer some guidance too.

As for the tribunal, the thought of a courtroom setting sounds like absolute hell to me! I get massive anxiety just from an unexpected knock at my front door, let alone having to explain and defend myself in front of a room full of strangers. But if that's what it takes, I'll have to find a way through it.

Thanks again for sharing your experience. It really does help hearing from someone who's been through something similar and eventually got a fair outcome. :)

From my experience, when i got the report back, they ignored anything that caused “mental” distress, and only focused on whether i could “physically” do it. Which meant most of it was 0’s. I will add, i do work, not full time but i work 20hrs a week, i drive and i have my own house, fiancee and a daughter. The tribunal however, was awful in my experience. I was expecting a small office room, quite relaxed etc…NOPE! It was in a proper court room, with an usher etc i was absolutely bricking it, it was like i’d walked into the lions den, i thought to myself what the f have i done. I’m sure my severe anxiety from the situation ironically helped. I wasn't alone though, i did have a professional with me from the local adult autism service. I couldn’t have done it alone, so if you do go to tribunal, i would suggest having someone with you for support.

I think I applies twice or 3. The last time I had a charity help me with the forms, I still didnt score enough, so asked for reconsideration. I requested the telephone assessment was recorded and a copy made availiable to me (which incidently didnt come in any useful timeframe), once I got a text from DWP to say they had recieved Capitas report, I requested a copy of their submitted report. This is done prior to DWP making a decision. Again the report made a priority to say how able each rask was rather than convey the difficulties I had told them about. So on the back of this I work to DWP addressing each item in turn.

I would suggest to anyone to get the report prior to DWP decision, and address it straight away to hopefully avoid tribuneral, however do carry on trying even if it means going to tribuneral if the difficulties affect your days as the scheme is set up to assist.

In a previous job I used to work for Citizens advice so I can give you some general advice.

The key words to use on every answer are I cannot to do this safely (I am likely to hurt myself or others doing this) I cannot do this repeatedly/reliably (I can do it but only with help/prompting from another person) I cannot do this to an acceptable standard.( I am unable to do this to the regular standard a person without a health condition could do)  I can do this but I need aides and adaptions to do so properly. 

Also fair warning Mandatory reconsiderations are mostly a waste of time 90% of the time they're just ignored by the DWP but you have to go through with them. They exist largely to deter and discourage you when you fail a second time. But stick through it and after you get your mandatory reconsideration result immediately apply to go to a tribunal. 

Also you'll want to speak to Citizens Advice or one of the other charities that deal with Tribunal hearings as they'll be able to give you the expert advice and support I've half forgotten. 

Good luck though!

Thanks for sharing your experience, and sorry to hear you're having to go through an appeal yourself!

I've already requested my Mandatory Reconsideration and spent quite a bit of time going through the assessor's report against the official PIP guidance, highlighting where I believe things were misunderstood or overlooked.

I'm also gathering some additional evidence, including a statement from my parents, so I'm hoping to give the existing claim the best possible chance before considering anything else.

Keeping a diary is a good suggestion though, especially for showing how difficulties vary from day to day. Fingers crossed your appeal goes well!

Hey there well if it helps I can relate to this

I recently had a LWCA review & its been declined vis appeal now as I scored zero points despite being eligible & proven I should of scored at least 15 points for social anxiety disorder.

I hate to say it but you have to do things "dirty" - as in whatever anybody says - only you know your own body, register details on a log you can sue for evdience.

the best way forwards for you is to have a reboot with the PIP claim, start from scratch

I say that as in my case, my legal advice & my advisors have told me now - after the fact I should of asked to add a "worsening condition or new condition" 

3 years.  I think they extended it but only by a couple of weeks or so.  Apparently because of the backlog they were extending a number of awards. It's good that you're being thorough with the MR as it will save you time if you have to appeal to tribunal.  Use the MR as if do8ng it for the tribunal.  Just my thoughts.

Thank you for sharing your experience, a lot of what you've said sounds rather familiar! I do wonder whether working full-time, living alone and driving have counted against me, despite the difficulties I have behind the scenes.

I've already requested my Mandatory Reconsideration and I'm going through the assessor's report activity by activity with the help of AI and the official PIP guidance. The letter is getting rather long with everything I'm having to question!  I'm also getting a statement from my parents to hopefully provide some additional context.

I actually use AI quite extensively in everyday life too. It helps me process information, organise my thoughts, communicate and generally manage things I struggle with.

I've always considered myself relatively high-functioning and have tried to get through life without claiming benefits. But with the cost of living these days, and the expense of keeping an ageing car on the road, a little financial support would certainly make life easier. It doesn't mean the difficulties haven't always been there.

I'll definitely have a look at that Facebook group. Thanks again for sharing your experience, and I hope your upcoming review goes smoothly!

Out of curiosity, how long was your original PIP award for before you were due for a review?

I applied for PIP several times while working (even just a few hours a week) and was always declined even at tribunal.  I always felt that working was one of the things held against me, along with being able to drive a manual car and living on my own (it can give the impression that you're managing fine when it's not the case).  I completely stopped working a couple of years ago and reapplied with a little help from a local mental health charity and this time I was given it at tribunal which I attended on the phone.  I only got an autism diagnosis last year (after I got PIP) and haven't actually told DWP as the thought of having to deal with them in any way fills me with dread.  I plan to inform them at the review which is due next year, and which I've been worrying about since I got awarded. I won't go in about my experience with it but as mentioned in another reply, it is very common to be given nothing on first application. It's a very complex system and I've always said that you need a degree in understanding PIP as I still don't always get it, lol.  I found a very helpful and supportive group on Facebook which may be useful to you: UK M.E. & Chronic Illness Benefits Advice Group.  There are others but I don't know what they're like.  I hope it's OK to mention this here.  Oh, and I actually used AI a lot in my application to help me 'translate' my thoughts and challenges (not happy about having to use it but in this absence of advocacy it's been very useful at times).  Anyway, wish you all the best, don't give up.

Thanks for sharing your experience! Glad you eventually got the award you deserved, but bloody hell, 18 months is a long time to fight for it!  I bet that was a rather nice lump of back pay when it finally came through, though!

It's reassuring to hear that such a low initial score can still be overturned.

I've already requested my Mandatory Reconsideration and I'm currently going through the assessor's report activity by activity, with the help of AI and the official PIP scoring guidance, putting together a detailed response explaining where I believe the assessor got things wrong or failed to consider information I'd provided. The letter is getting rather long now, simply because there's so much in the report I've had to question or challenge! 

I'm also getting a supporting statement from my parents about the difficulties I've had since childhood and the support I still rely on today, which I'm hoping will help strengthen my case.

I'm hoping the reconsideration goes better, but I'm prepared to take it to tribunal if necessary, although the thought of another year waiting isn't exactly appealing!

Can I ask if you're also autistic, and whether you felt working or living independently counted against you during your assessment?

Thanks again, really appreciate you sharing your experience! :)