paper square angry face,held up in front of a brick wall

Personal Independence Payment: Asperger’s Syndrome Decision


paper square angry face,held up in front of a brick wall
Photo by Andre Hunter on Unsplash

Excuse my language but that was my reaction to the decision to end my son’s Disability Living Allowance just before Christmas, on the grounds that he has not been awarded Personal Independence Payment. After being put through that hideous PIP Interview they have made the decision that he has scored zero points.

Understanding why they said No to Personal Independence Payment for Asperger’s Syndrome

I understand why they said no to Personal Independence Payment for Asperger’s Syndrome as I am aware that our son is doing incredibly well living away from home. That there was the chance he would not be awarded PIP, as even in the interview it was said that he would be on the border of whether he would get it or not. This had shocked me as I felt sure he met the criteria for at least 12 points, which would entitle him to enhanced, but I had got my head around the fact that there’s others much worse off than him and maybe it is just because he is doing so well. After all, he has managed to move out, and with support is coping incredibly well (trying not to dwell on how much he isn’t looking after himself and could be in danger).

sink full of dirty pans
Photo by Scott Umstattd on Unsplash

I can understand how the Department for Work and Pensions don’t get that he isn’t really washing himself properly (or regularly) and choosing the right clothes – and that I am letting him live like that to help him get more independent. Taking a chance on the letting go – and fearing that he’s not being taken care of, and is putting himself in danger (and honestly I don’t NEED to hear that MOST teenagers are like this either!). I do, I get that. I mean it is hard enough for me to get my head around without them having to struggle: Knowing that there’s just support at the University and a Specialist Mentor that he sees once a week (at a cost of £60 an hour via his Disability Support Assist from the Student Finance England). Yes he isn’t receiving any more support and it is hard for them to see that just because he isn’t getting something doesn’t mean he doesn’t need it. Obviously otherwise I would have fought harder to get him the care he needs – right?

Not Understanding why they said No to Personal Independence Payment with Asperger’s Syndrome

But the fact that he scored zero points on every aspect of the form – not even we recognise that his Asperger’s Syndrome affects his life but maybe not enough for payment – I really cannot understand though. It is like they have the ability to completely cure him of his Asperger’s Syndrome. Making me feel like a fraud for ever claiming for him in the first place. Saying that he has absolutely no problems with social and communication! Are you kidding me! Even though at his face to face consultation they saw it! Even though it took until he was 10 years old to be diagnosed (he was first assessed at aged 2) – after at least a year of professional bodies observing and assessing him before a diagnosis was made! But this interviewer, the one with the family member on the Autistic Spectrum, he is in the know. And my son is just fine – now if only I could believe the DWP as much as they believe themselves! I mean I don’t know what all those Speech and Language Therapist thought they knew – but they are completely wrong. And those struggles he has – well he’s obviously just playing me and being lazy!

jumbled up and backwards neon words that make no sense
Photo by Alisa Mulder on Unsplash

Mandatory Reconsideration for Personal Independence Payment

mother comforting upset child
Photo by Jordan Whitt on Unsplash

My son was so upset when I told him the result, and I have promised I will appeal (starting with a request for a Mandatory Reconsideration for Personal Independence Payment). But I don’t think it will do any good – they have made their minds up – he’s okay. It doesn’t matter that he doesn’t eat and needs reminding because when pushed he said he can reheat a pizza and waffles in the oven; honestly what more nutritious meal could anyone want. So many factors ignored. My emotions all over the place; as strong as I try to be I go back to worrying that I am just doing it all wrong. They brought up the lack of support at school, and they just said it was rubbish parenting. Maybe I shouldn’t be so angry at the decision, and just be grateful that they are right?!

Read more on why the DWP made their decision to say no

7 thoughts on “Personal Independence Payment: Asperger’s Syndrome Decision

  1. Oh this is just rubbish and it both saddens and terrifies me. Best of Luck with the reconsideration and let’s hope someone with sense overrules.

  2. No, fight for it. They did this to my son too. The report was so full of lies about his interview it made me feel ill. I failed the mandatory reconsideration and had to go to tribunal, only my son refused to go. it was bad enough getting him to go to the interview. So I requested a paper tribunal despite being told that I had much less chance of winning. I did win though and I’m glad I fought for it despite all the stress it caused us both. xx

    1. Sorry you’ve had to go through this – but glad you won in the end. That’s helpful to know that you can do a paper tribunal because like you the interview was too much for my son, without having to put him through anything further.

  3. Zero points is insulting, to say the least. I mean, who are they getting to do the interviews? Morons?

  4. Sorry – only just saw this – otherwise I would have replied sooner.

    This is EXACTLY what happened to us. His initial result was 0 points. I found it insulting. They were essentially saying we sound push him out of the door in to the big wide world and he would have no problems. I think if they had awarded him a few points here and there I would have accepted their decision. The 0 points is what totally made me mad.
    After the initial reconsideration he still had an award of zero – so we pushed on and requested a tribunal.
    We did not even had to go to court – a letter arrived to say that after further consideration he was awarded 20 points !!!!!! (20 for care and 8 for mobility)
    We supplied no additional information although we were starting to pull some together ready for the court hearing) just stressed our original points and where we totally disagreed with the assessors comments.

    So – do not give up, and good luck.

    1. Oh wish I had known that sooner and glad it worked out well for you. I am afraid I did give up. The time to apply for tribunal letter was sent out in December and I am sure you know what a difficult time of year that is. I just didn’t have the extra fight or energy left in me for what felt like a losing battle. Plus I had his 21st to sort.

Comments are closed.