PIP

I got zero points at first, a few on mandatory reconsideration and then 11 at the tribunal when I appealed. Most appeals are overturned (as in the person claiming pip wins) because they have actual people that know about the condition on it. So always appeal.

And remember, you count as not being able to do something if:

You can't do it reliably/REPEATEDLY OR it takes longer than other people to do OR it causes you pain or overwhelming distress if you do it or might cause you this,  OR it is not safe to do. Eg you can socialise but it leaves you too anxious or exhausted to do anything else for days. Or you can travek but there's a chance you will not be able to get home if you have a meltdown

Yes. I was ill health retired for medical reasons, but to young for state pension and the work pension doesnt cover living so its an endless 'battle' to apply for help even with 40 years of work and contributions behind me. The late formal ASD diagnosis adds to it, but I have always found adult life very stressful and confusing.

And just to add - my other son’s girlfriend has loads of qualifications and she’s been trying to find a job for well over a year now and can’t find one. It’s so hard for people now. They have no choice but to claim something (in their case universal credit) because it’s demanded they pay for hugely high rents and food and heating. 

My son is in the process of his PIP review and I know exactly what you mean. It’s exhausting and frightening in our experience. Without my support I know that my son would never apply because the application process is so complicated and daunting - it took us 3 days just to fill out the form and we were so stressed and worried about doing it. Sometimes we feel like giving up. My son often feels suicidal because he struggles so much with life - and filling out this form and going over and over how much he struggles is incredibly damaging for his mental health. He has very severe ocd and talking about that is off the scale stressful for him. The education system never provided him with the help he needed to overcome his Selective Mutism in school, and now he’s an adult there’s still no help. And then when he needs to claim money to live in they make you feel bad about that - like ‘you should be earning money not claiming benefits’ - but maybe if they’d given my son the right help when he was at school then maybe now he would be able to get a job (maybe) but he can’t talk to people so how can he get a job? So why do they make it so hard for people who have no choice but to claim something just to eat etc? I hate the system because it makes us feel so bad about the fact that we are struggling - even when we are really doing our absolute best. Every day is a struggle for my son. The system should be kinder and more supportive - instead of threatening and exhausting. 

Being late diagnosed, I have spent my life 'fitting in', and saying say too often, to the detriment of my (physical) health etc, maskin and people pleasing, and often i wont ask for help just rather get on with things. So when thwy push for a 'can you' answer by asking several ways even when difficulties and dangers etc are explained.

But I guess I dont know their thoughts so will recover while I wait and see

I asked for the audio, and asked DWP for the assessment report, but I guess apart from anything its a waiting game again.

They get you to say you can do stuff rather than listen to the problem you have struggling to do them. 

You're right, but I have been totally deflated.

These calls are mandatorily predetermined to refuse people. They know more about you before the call than you think. You have to prepare for that outcome (refusal) and stick to what you know is true, without elaborating which probably means taking them to a lower tier legal hearing.  

‘Don’t think I’m a fraud’ is telling. You are not a fraud, even though you feel like you are or that others will think it. We all worry about others disbelief in our condition largely because we have doubts ourselves. When we are diagnosed we know that we struggle but our perspective is twisted by what we can do or achieve. I always say to my family I’m the least autistic and they always reply ‘no, you’re the most’. Pursue PIP, fight for your rights. This is a neurotypical world but we shouldn’t have to put up with it. 

I can understand why you feel paranoid about this. The whole system creates paranoia- in fact I think it’s deliberately designed to do that. You did everything you could, you did your best, and you can do no more. It’s a hostile system. It’s out of your control at this point - and you never know - it might all work out ok. Try to mentally surrender to the fact that it’s now out of your hands - because stressing over it won’t make any difference - apart from just making you feel worse.