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0 points for PIP, should I appeal?

131 replies

elliejjtiny · 18/01/2026 11:49

Ds is 19, has autism and has been on DLA/PIP since he was 9. He was turned down at renewal with 0 points because he has a part time job and because he goes to university.

He has a lot of support to do his job and at university. His life is restricted because of his autism, eg he can only go to the supermarket when it's quiet.

I do a lot for him, much of which isn't covered on the form. i am also his appointee. I still think he should have got points in the communication section and the money section. Also the planning a journey section as well.

It's not just about the money. I feel like when he was on PIP, his disability was recognised and my support for him was acknowledged. I am always being told that he hasn't got "proper autism" because he hasn't got learning disabilities as well. I voiced my concerns when he was 8 months old and he didn't get a diagnosis until he was 9 so that was really hard. At least before I could say to myself that the dwp have acknowledged his disability but now it feels like we have gone backwards.

OP posts:
allmycats · 19/01/2026 22:10

The expectation to take your own son to and from university and actually talk to him is a perfectly reasonable expectation between father/mother and son. Why do you believe someone should pay you for this.

elliejjtiny · 19/01/2026 22:14

A lot of the things I do for him I do automatically, without really thinking about if other mums of 19 year olds would do that, which means there are probably things on the form that got missed out. He does need a lot of prompting and reminding to do things, which is harder from a distance. He doesn't really speak to anyone he lives with either and there is no way he would cope in a shared house. The halls he is in organises activities most weeks with free food which helps his social skills.

OP posts:
PIPnamechanged · 19/01/2026 22:33

He works at a fast food place within walking distance of home, mostly cleaning, tidying up etc. He has a list and works through it. He does a very good job as he is very focussed and doesn't stand around chatting etc like some of the younger workers do. He has a zero hours contract and it's really flexible so he works the hours he wants to and he can have space and time to decompress when needed.

So he works in McDonalds or similar. He might do mostly cleaning and tidying, but he’ll have been to an interview, attended training. There’s a reasonable expectation that he’ll be asked something by a customer or have to engage with other staff (new staff, people he doesn’t know).

He lives away in halls at university but we arranged for him to be in private halls where there is more support. He lives next to a massive building that can be seen for miles so he can't possibly get lost.

That shows a reasonable level of cognition, insight and understanding. The private halls reference doesn’t mean much as you’d still need to be adequately capable to be there at all.

He gets support from DSA (which he has said he couldn't manage without) and he also messages me regularly for advice. He can cook really simple stuff like putting a pizza in the oven, ready meals or pasta with sauce from a jar.

DSA input holds a bit of weight, but messaging you for advice is standard and expected for people his age who’ve moved away from home. In relation to cooking, he’s using the oven and boiling pasta. Whilst those aren’t fresh meals, he can safely use appliances. You might counteract by saying that he can’t sequence the tasks for a fresh meal or can’t tell when raw meat is cooked (for example), but he’s studying at university, living away from home and is working. Overall, the weight of the big picture doesn’t indicate a significant restriction.

He struggles with social skills and doesn't really speak with his housemates but he met another autistic student near the beginning and he will sometimes talk to people on his course.

This would be added to the first point I made RE him working in a fast food place and being expected to be able to interact with others. He’s met new people on his course (their diagnosis doesn’t matter) and is engaging with them. That’s a huge indication of adequate social engagement ability.

He has strategies to cope that I have taught him. He has a lot of dvd's of a tv programme aimed at under 5's that he watches a lot when he feels overwhelmed.

Out of the norm pastimes aren’t really relevant most of the time. In fact, it’s a coping strategy so it’s actually showing his ability to manage.

He is fairly hopeless with money and will prioritise fun over essentials. We have said his student loan is for food, laundry etc and his wages is for fun stuff. We still end up with an inevitable phone call saying he has run out of money and can we send him some.

Not unusual at his age, with new freedom and learning the way of the world. Without significant debt, CCJs, repossessions etc, it’s unlikely to hold much weight.

I’ve looked at the above through the PIP lens, so to speak. We go on the weight of evidence, not just one thing. It’s really important that any claimant remembers that the bar for PIP is fairly high. If you’re managing an adequate (not necessarily good) standard of living, you’re not going to get it.

You mention he can’t manage a bus but can manage a train - that’s good enough for PIP. You don’t need to manage every aspect of life; just enough of it.

From what you’ve written, OP, I wouldn’t have awarded benefit in this case. Obviously this is a brief insight I’m getting, but you/he has a lot to indicate he can manage that adequate standard of living.

Interested in this thread?

Then you might like threads about these subjects:

PIPnamechanged · 19/01/2026 22:36

elliejjtiny · 19/01/2026 22:14

A lot of the things I do for him I do automatically, without really thinking about if other mums of 19 year olds would do that, which means there are probably things on the form that got missed out. He does need a lot of prompting and reminding to do things, which is harder from a distance. He doesn't really speak to anyone he lives with either and there is no way he would cope in a shared house. The halls he is in organises activities most weeks with free food which helps his social skills.

He needs prompts/reminders? For what?

That would be countered by the DWP because he works and studies. Showing up for work, seeking employment, attending classes, passing your modules each year…all indicative of adequate motivation.

Similar to the events in halls; he’s showing motivation and desire by going to those.

Pearlstillsinging · 19/01/2026 22:39

BatchCookBabe · 19/01/2026 21:40

You have nothing to lose by appealing, but from what you say, it doesn't sound like he should be qualifying for PIP. He is at Uni, living independently, and has a part time job. It sounds like he has been dependent on the money, and wants the PIP for the extra money, rather than it being that 'he needs it' IYSWIM.

The Government are trying to bring the benefits bill down, and under 25s are going to be one of the first to get benefits axed. Not being funny, but it's untenable for people still in their teens to be on PIP or other benefits for the rest of their life until retirement. So any sign that a young person can possibly come off this benefit, and the government are taking it, and stopping their PIP.

I don't mean to sound harsh, but you (and your son) can't really realistically expect him to get PIP for the next 50 years. The earlier/younger he gets used to not having it, the more independent he can be, and the more of an adult he can be.

Your son will adapt, and I said, it doesn't sound like he really needs PIP. (From what you have said.)

Do you actually know what PIP is? Most people who qualify for PIP will be in receipt of it for the rest if their lives. They are NOT going to get better, they will always need support to live independently and work. OP supplies most of this support for her son currently, there is no reason why she should do so, just because she is his mum. In future, He might be able to pay a PA to do what mum does now, if he qualifies for PIP.

KilkennyCats · 19/01/2026 22:40

elliejjtiny · 19/01/2026 22:14

A lot of the things I do for him I do automatically, without really thinking about if other mums of 19 year olds would do that, which means there are probably things on the form that got missed out. He does need a lot of prompting and reminding to do things, which is harder from a distance. He doesn't really speak to anyone he lives with either and there is no way he would cope in a shared house. The halls he is in organises activities most weeks with free food which helps his social skills.

But what would the pip money actually pay for? Unless it would pay for an actual live in carer for him (and it doesn’t sound as though he needs one), there isn’t an actual monetary cost that you need to be compensated for.

SugarandSpiceandAllThingsNaice · 19/01/2026 22:48

I have a disabled daughter at Uni as well. She is autistic and physically disabled. She has DSA and a Uni bursary to cover the extra costs of adapted accommodation. She cannot work and do Uni. In fact, she is struggling with the amount of Uni work due to the fatigue and chronic pain of her physical disabilities. She is older than the other students in her year as she matured more slowly due to autism.

She did not qualify for PIP.

Your DS sounds much more capable than my DD. Working in a busy fast food restaurant without sensory overload and succeeding at a Uni degree course. Able to travel independently. Able to make simple average student type meals for himself- not even fully abled students cook from scratch.

I’m sorry but, the threshold for PIP is a lot higher than for DLA as a child. Normally I’d say go for an appeal but the more I read about your situation, the more I think it would be better to honestly compare how he is to the criteria.

That’s not to say he will never qualify for PIP. If he hits autistic burnout and ends up needing to sleep 16hrs a day for a year and can’t even shower, eat, or hold a conversation then he’d get the enhanced rate for both. The decision of no PIP now should be testament to his success here and now with the understanding it is still there as a safety net if he burns out, and autistic people are at higher risk of burnout.

ForPinkDuck · 19/01/2026 22:48

I sucessfully appealed an esa decesion for a relative. I did this by using the the excellent online guides from citezens advise and mind. I systematically went through the form stating exactly what my relative needs were and what support they get.
It sounds like he is managing because support is sewn in to his life.

mumofoneAloneandwell · 19/01/2026 22:49

Definitely definitely appeal - appeal and appeal and then apply again x

DoItTwoDay · 19/01/2026 22:52

I can't see why he would qualify for PIP at all tbh. Sounds like the decision was right.

Penelope23145 · 19/01/2026 22:55

KilkennyCats · 19/01/2026 22:40

But what would the pip money actually pay for? Unless it would pay for an actual live in carer for him (and it doesn’t sound as though he needs one), there isn’t an actual monetary cost that you need to be compensated for.

That doesn't seem to matter. When PIP is awarded no-one ever checks what it's being spent on.

PIPnamechanged · 19/01/2026 23:01

Penelope23145 · 19/01/2026 22:55

That doesn't seem to matter. When PIP is awarded no-one ever checks what it's being spent on.

Ha, sometimes people are quite willing to tell you what they spend it on during an assessment.

Sometimes it’s stuff like private physio, holistic treatments, aids for their home, a cleaner. Other times they’ll tell you it’s for a holiday, alcohol, fags, gambling, presents for the kids.

Serencwtch · 19/01/2026 23:02

KilkennyCats · 19/01/2026 18:04

He sounds as though he’s navigating life quite successfully atm. What does he need financial support with?

PIP isn't awarded for financial needs. It's awarded for personal care & mobility needs. There's no part of the assessment which measures costs of what's needed.

KilkennyCats · 19/01/2026 23:09

Serencwtch · 19/01/2026 23:02

PIP isn't awarded for financial needs. It's awarded for personal care & mobility needs. There's no part of the assessment which measures costs of what's needed.

But there isn’t currently a cost being incurred for either of those things?
Why would they pay for personal care, over and above what everyone else needs?

Serencwtch · 20/01/2026 07:09

KilkennyCats · 19/01/2026 23:09

But there isn’t currently a cost being incurred for either of those things?
Why would they pay for personal care, over and above what everyone else needs?

It's not awarded based on cost of those things & most personal care is met my social care funding anyway.

It's an acknowledgement that having a disability makes life overall more expensive & limiting. About to earn is reduced etc.

Everything in a life with a disability is more complex to plan & do. It's always the cheaper options that are off limits.

user1476613140 · 20/01/2026 07:28

We appealed ADP for DS 18 when he was 16 and from initially being awarded nothing he was then awarded high rate ADP.

user1476613140 · 20/01/2026 07:29

I think it's called a re-determination in Scotland. You have nothing to lose. It is worth reapplying.

TigerRag · 20/01/2026 07:45

mumofoneAloneandwell · 19/01/2026 22:49

Definitely definitely appeal - appeal and appeal and then apply again x

On what basis? He doesn't sound like he qualifies

arethereanyleftatall · 20/01/2026 08:11

I teach in a school for children with severe levels of autism, and my DD has also been diagnosed but they are worlds apart in terms of functionality. My DD sounds similar to your DS and tbh it hasn’t occurred to me to try to get extra money for her. Yes, she does require bags more support than her NT sister, but most people have one thing or another to contend with. We are currently seeing anecdotally about 30-50% children coming through now with SEN (my job means I teach 10 schools in our local area so these are the figures), many not officially diagnosed simply on the pathway/about to be, so these numbers are not being picked up yet. We cannot fund a system whereby that many young adults who can work and study are being paid by the tax payer because their bags are too big. We just can’t.

LadyKenya · 20/01/2026 09:31

I would have thought from what I have read, that the OP's Son would have got some points, even if it was not enough for an award. But maybe the right decision was made.

FalseSpring · 20/01/2026 10:23

I'm sorry but it's claims like this that give everyone on PiP a bad name. He really isn't disabled enough to qualify. I understand that having an ND DC is hard, but many of us just get on with it and don't expect taxpayers to subsidise us.

Isobel201 · 20/01/2026 10:28

I get PIP for my physical disability arthritis, but when I tried to get points for my Aspergers syndrome, it was a straight no, considering I could hold down a full time job despite having reasonable adjustments supporting my autism needs to work from home. Its good really that the civil service does help, but there would be no garantee that if I had to find another job I would have the same support. I don't the report I sent in helped because although it showed my diagnosis, it doesn't show any of the latest support I receive, and to get another psychologist to confirm that would probably cost too much.

Coffeeishot · 20/01/2026 10:29

Friendlygingercat · 18/01/2026 11:55

I would contact a benefits advisor at citizens advice to appeal. There are ways of filling out the form and using words to describe his difficulties and the level of support he needs that you may not have used. These people are familiar with filling in the forms. There may aslso be advice online in U tube and Tik Tok. There's also a subscriber service called Benefits and Work which is invaluable for these kinds of appeals in using the correct terminology.

Edited

Yes do this. They can help you through the appeal.

tinyspiny · 20/01/2026 10:45

You have every right to appeal but from what you’ve said I can’t see how he will qualify and people can’t just be given it as recognition that they have a disability . If your son is capable of holding down even a menial job and keeping up on a university course he is probably capable of realising that he has a diagnosis and you don’t need to get extra money from the state in recognition of that fact .

Barrenfieldoffucks · 20/01/2026 10:48

elliejjtiny · 19/01/2026 22:14

A lot of the things I do for him I do automatically, without really thinking about if other mums of 19 year olds would do that, which means there are probably things on the form that got missed out. He does need a lot of prompting and reminding to do things, which is harder from a distance. He doesn't really speak to anyone he lives with either and there is no way he would cope in a shared house. The halls he is in organises activities most weeks with free food which helps his social skills.

None of that requires money though.

Nil PiP isn't them saying they don't think he is autistic, just that his being so doesn't involve extra costs to him personally (as an adult) to live.