New to PIP fluctuating condition ASD catatonia

Hi everybody, 1st time poster here though I have been following the site for a couple of years.

I am the mother of a young man with Asperger's syndrome and dyslexia dyspraxia who had full time support through school SEN.

Since teenage years my son has had more and more frequent episodes of what turns out to be catatonia and has been linked to sinus/dental infections and stress. he was hospitalised back in 2010 but we got him out of there after too much violence by other patients (plus he escaped and got back in without anybody noticing) , they wanted him to stay for 6 months observation/assessment. Long story short , no ASD specialism, no clue, no observation so since then we have managed the episodes at home. He has been discharge (last December) from mental health on the basis of carrying on as we are and that they have no ability to support people on the spectrum (and are short staffed, short of money etc).

My son has never had any DLA, or other benefits - but was recommended to apply for PIP by his DSA assessor.

Our problem is that his condition goes from needing supervision/prompting when he is baseline to being mute/immobile/anorectic/insomniac/incontinent or worse retaining.

So my question is, how on earth do we fill in the form?

He has also started taking antibiotics to try and ward off the full on catatonic symptoms and this seems to help but he is the in a state of uncontrollable anxiety: pacing, unable to concentrate and obsessively and irrationally worrying about the same thing over and over.

So he has three possible states. This has been happening since 2010 oh and also a problem with sleeping even when at baseline functioning he goes round the clock over a period of a month, so we can't tell when he'll be awake in advance.

The PIP lady on the phone suggested we request a home assessment in case he is catatonic when they want to do it (that will be a laugh ). I don't know if i can put that in a separate note or what?

Any advice truly appreciated. We have avoided this up til now because stress is a trigger, but we won't always be here and my son is really going to need help if this carries on.

Thanks for the helpful reply. Unfortunately my son does not have much in the way of insight because of his ASD (which he hasn't yet taken an interest in or tried to understand) and due to the fact that his extreme anxiety and catatonic episodes are followed by nearly complete amnesia and loss of sense of time, so he's gone ahead and filled in "I have absolutely no problems with..." for pretty much everything....

Which is good to see as we've tried to avoid focussing on the things he can't do to prevent him being down on himself and under normal circumstances I would be cheering that he had a go at doing it himself - paradoxes of the Personal Independence: first you have to understand just exactly how far you are from being independent, then ask for help that they don't really want to give you! It is a minefield for people who need concrete communication.

This was after getting in to a panic, changing his mind about applying, telling me to do it, not to do it or speak at assessment, and then going back into his obsession with the tax system so as not to think about it at all- so we had to get an extension.


Given his dyspraxia and communication difficulties his answers are mostly illegible and don't truthfully reflect even his baseline.

His baseline difficulties are well described in his statement of SEN which we are including and the CAMHs care plan, which mostly just says catatonia with psychotic features triggered by stress and infections, prefers to be cared for at home, CPN visit every 6 weeks.

He is going to write additionally under each question "Please see carer's (Mother's) information, page ..." and I will put in the info on difficulties when anxiety/stress is high and when catatonic in there,plus the truth about how much help he actually needs at baseline. Do you think that will be OK? Or will they just give priority to what he has said on the form (if they can read it).

In the end he wrote under his answers "for bad days please see carer's report". So this process is actually helping him to gain a bit of self awareness.
Hopefully it will stay with him, regardless of the outcome. He has a very large IQ split so has trouble matching expectations with realities -
I wrote up a detailed description of his true capabilities as they vary from good days to bad days to terrible. This was suggested to me over the phone by the PIP lady when we had to ask for an extension - so I put that in there too: "as recommended by DWP staff due to lack of insight of claimant".

All copies of care reviews/discharge notes/care plans and GP's letter in support of need for home assessment have gone in, name and NINo on each numbered page, scanned copies saved. Great advice on these pages
it is a very complicated process and my son would be literally incapable of getting it done on his own or giving a true picture of his condition so I suppose I should be his appointee. Another tricky area, because of need for independence and self-esteem I prefer to give support and encourage him to realise when he needs to ask for help or advice as that is a real problem for him too.

Posted today so that's that for now...

Hi,
after being turned down for PIP initially, we requested mandatory reconsideration and sent a very detailed letter describing how Asperger's syndrome affects my son, contesting each reason they sais he didn't need support with examples- the initial rejection just said that they didn't consider that he had the difficulties and awarded 2 points for needing prompting to socialise. They ignored all the information in the supporting letter we sent with the claim and just went with his f2f answers. We were sent appointments for assessment centre instead of home visit even thought the GP requested home visit because of the unpredictable nature of my sons symptoms. Eventually got this sorted out, ringing back an forth between PIP (helpful on the phone at least) and ATOS (not so much).
I rang up to confirm that they had received the mandatory reconsideration request and supporting additional information letter.

Some 2 months after requesting MR we got a letter saying he had been awarded standard rate daily living for 'an ongoing period'. They couldn't take into account his more serious symptoms - the catatonic episodes, he has been in one for last ten days for e.g - because they don't happen more than 3 months out of the year (thank goodness).
My son is very relieved to have his difficulties recognised and this has reduced his constant anxiety about how to survive somewhat.

He would not have been able to get across his situation without our help as he has very little self awareness; we would not have been able to understand what was needed without the help of your website and this forum. You are providing a vital service here and it is very much appreciated

We are a bit worried about the phrase 'an ongoing period' as it is very vague, Has any one else had an award with this phrase and no date?