0 points for PIP, should I appeal?

[elliejjtiny]

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.

His functioning sounds really high, you sound like a really brilliant parent who has helped him to find ways to cope as best he can.

Thank you. I am really proud of him that he's got this far. The day before he left for university he got upset because he was scared (I remember being the same when I went) and then leaving him the next day with him trying so hard to be brave was just awful. I got multiple calls that first week from him saying that he couldn't do it, that everyone else was "normal" etc. But then he met some other people and found his tribe. He is thriving, despite needing to message me multiple times a day (thank goodness it's free now, I used to have to spend 10p a text message and 35p a minute for calls when I was his age).

I think if he'd scored 6 and the letter had said 'sorry but you don't quite meet the criteria' or that the government can only afford to give PIP to more severely disabled people then I would have been fine with that. But to score 0 after being on standard rate in both categories up until now feels wrong, especially when they have based a lot of it on assumptions that if he can do X he must also be able to do Y.

I have other dc who are more severely autistic than him so I do understand what it's like to lock medication away from a suicidal child and having to have eyes in the back of my head with a teenager who acts more like a toddler. But I am very conscious that my eldest has his own struggles that should be acknowledged and he shouldn't be compared to his brothers who have more severe needs.

But I am very conscious that my eldest has his own struggles that should be acknowledged and he shouldn't be compared to his brothers who have more severe needs
We all have our own struggles. I think people with ND children or an ND diagnosis themselves often underestimate the challenges that so called NT people face. That's because almost everyone has some ND traits and these traits are often not insignificant.

For example, lots of young people at university struggle to cope with the practical side of living independently. When I was a student I didn't do my laundry enough, had a very messy bedroom, would frequently miss lectures and would often have to pull all nighters to complete essays. I also could cook to the same standard as your son. Should I have been entitled to PIP as an acknowledgement of my challenges? Where do we draw the line?

As an older adult I can identify quite a few ND traits in my behaviour. I have terrible time management/blindness issues and have to put in place strict routines and processes for quite basic things that I imagine most people find easy. I don't think I would receive a diagnosis though even though the day to day impact of these traits on my life is very real.

I'm certainly not alone. I have friends with very messy houses, who struggle to hold down jobs and who have very rigid ways of living etc. I think all of these things are often driven by some level of Neurodivergence from the expected norm. It just might not present itself in the right way for a diagnosis but there are plenty of people who apparently sabotage their lives and do inexplicable things that I think have strong ND traits in specific areas.

I think the whole issue of PIP is really interesting, as to why we (as a society) give it, what are our criteria and expectations, because you hear people talking about PIP in very different ways.

One example I can think if was a lady who is working, part time. She managed work because she used her PIP to pay for transport (can't remember if she had a car or used a taxi). She was physically disabled.
Her PIP was removed because she was able to work.
But as soon as her PIP was removed, she was no longer able to work, as she couldn't afford the previous transport arrangement and could not manage the journey on public transport due to her disablity.
So she had to stop working and go on full UC.

I often think of that story in relation to my dd who I wrote about above. She wants to teach. She would manage a part time teaching job, and be very good at it. But in order to live on a part time wage she would need support. From where? Should that be from PIP because she can only manage part time due to her autism, or should that be from us as her parents? (we can't afford that). Her inability to work full time is down to the fact that she is autistic. Should society support her?

This is a philisophical question really. Are we better off supporting someone in work with something like PIP or letting them not work and claim UC?

I work full time and claim PIP, so that doesn't add up really.

well in your case your PIP has not been removed, but in the case quoted, the woman's PIP was removed citing that she was well enough to work as a criteria.

Gosh, amazing, not every case is the same.