Applying for PIP for 16 yr old - am I wasting my time?

[Pipdilema]

DS 16 has high functioning autism and currently receives low rate DLA. He was only diagnosed a couple of years ago, despite being under assessment on & off since age 2, when anxiety triggered by high school became too much and his ASD really became evident as he couldn't mask it any more.

We've now had the letter saying DLA is ending and giving us the option of applying for PIP. A quick read of the process makes me think we might be wasting our time. The DLA process was bad enough & we only got it on appeal, although professionals who had worked with DS were surprised he didn't get middle rate.

DS seems quite happy and is coping well at the moment thanks to lots of help and training following his diagnosis (he was in a terrible state of anxiety by the time he was diagnosed and was extremely depressed, unhappy and had anger issues making him very difficult to deal with). He is not brain of Britain but has an iq in normal range and is projected mostly 5s in his GCSEs. I fully expect him to be accepted into college to train in his chosen trade and am pretty confident he will get a job at the end of it. I'm also sure he will pass his driving test next year. He has a reasonable amount of common sense but can also be extremely silly and immature.
He has come out of his shell a lot over the past year thanks to the support he was given and to a voluntary job that he loves related to a hobby. He comes across as quite a shy, awkward young man (limited eye contact) but is articulate & personable. This makes me think that when he has the interview that I understand is part of the process they will reject him immediately!

However, just because he is coping pretty well at the moment, I've no idea what the future holds. It's possible that changes such as college or work could trigger a crisis and send him back to the dark place he was in when diagnosed. He still finds it extremely difficult to ask for things in shops, make journeys on public transport (unless it's somewhere he really wants to go such as his job in which case he will do it after a run through with me first), and do things independently. He doesn't go out and socialise at all, his job being the exception. He doesn't really have any friends.

Sorry that this is so long but I'm just wondering if it'll be worth the stress of putting us through this and what the liklihood of a successful application will be given what I've said above.

Would love to hear from anyone who has had a similar dilemma!

Thank you in advance.

can also be extremely silly and immature
Many people with AN have an emotional "age" around two thirds of their chronological age, so don't expect him to be as emotionally aware as his age-peers.

PIP, have you had a look at the descriptors? www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/

PIP is not means-tested and is available for people who can work, so there's nothing stopping you from applying.

www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/before-claiming/if-you-get-dla/

I got PIP for my dd at Tribunal but she's very much less able than your DS. It is difficult and time-consuming and very frustrating, but appeal the process if you think they've made the wrong decision. Over 70% of cases are overturned at Tribunal.

However, just because he is coping pretty well at the moment, I've no idea what the future holds. It's possible that changes such as college or work could trigger a crisis and send him back to the dark place he was in when diagnosed
This is why I think you should apply, our kids can cope because of previous help and support, until that's "not needed" and it's removed, then something happens and they really can't cope without help. Be honest, what does he need your help with day-to-day? It's so easy to forget all the things you have to do as it's just second nature to a lot of mums. If he can't make a journey on his own, explain why not. If he can only plan and make a journey with your help, i.e. not at all if left to his own devices, make that very clear.

how able is he to complete the form himself and give a true representation of his circumstances? IMO, our kids like to say they can function independently, when reality is a lot different.

The Benefits and Work website also have a Guide to filling in the PIP forms, you have to join for a year to get the Guide, but it's full of useful information.

Thank you - very helpful. I actually just called and requested the forms as we're pretty close to the deadline. I think I will apply and see where it leads us. I do feel he can only what he does as we are there to back him up, how he would cope if we weren't around is a scarey thought

I got PIP for my dd at Tribunal but she's very much less able than your DS. It is difficult and time-consuming and very frustrating,

This is what makes me think we have no chance if they initially turned down your DD who is very much less able than DS. DS can come across very well when being interviewed so that I'm sure some people can't believe he's autistic, especially more recently as he's had lots of training. However, they don't see him at home! However, as I said, I'll give it our best shot.

I put a long screed together from lots of different sources, most were posts on different boards on MN, earlier this year, you may find it helpful.
www.mumsnet.com/Talk/feeling_depressed/3548163-DLA-turning-to-PIP-advice-please?msgid=86065752

Try keeping a diary from today and note in it absolutely everything that you have to stop what you're doing to help him with, it's quite eye-opening. We do so much without even thinking we'd not do that for an NT dc.

Pip can I ask how and where you accessed the support for your Ds? Ds is 15 and recently diagnosed with autism. We have never even tried to claim DLA as I didn't think he would be entitled. Ds doesn't really go out. He wouldn't be able to use public transport or pass his driving test in a couple of years. He would struggle at any interview. He also has mental health issues and we are fighting to get him some support at the moment. There doesn't seem to be any as our camhs don't like seeing autistic young people. Paediatrician offered zero support. School offering very little although they have said this week they might be able to offer some counselling but if I think he might struggle unless it was someone understanding of ASD.

I'm so pleased that the support your Ds has received has helped him along and I'm sure it's worth making the application and giving it a try. I do wonder if we should think about PIP too.

@Punxsutawney we're lucky enough to have 2 local autism charities that run training courses for both parents and people with ASD. DS also attends youth/film clubs run by them. School (mainstream)have also run a couple of social skills groups for pupils with communication difficulties and have a learning support dept he can escape to and who provide support for school related issues. We were also lucky enough to make friends with 2 couples we met on one of the courses. We meet regularly and support each other.

Pip sounds like you have quite a good support network around your ds.

Our local autism charity don't offer anything and just signposts you to other services. Ds does attend an ASD youth group but stuggles to cope with it unfortunately.

School have offered nothing as far as social skills groups or much support at all really. Ds can go to learning support and does have permission to leave the classroom if necessary but he won't do it, he feels unable to. We do attend a monthly parent's group which is useful for us but there is nothing really for Ds.

I think it's too late for us to look into DLA now so I might investigate PIP.