PIP for high functioning autism?

[Saramia]

The specialist who diagnosed me with autism told me to apply for PIP. I struggle with social situations and people exclude me because they don’t like me. This makes it difficult to get a job because employers also don’t like me. When I have managed to get work, I’ve been sacked for being “weird”, eg sitting in the cupboard on my lunch break because it’s dark and nobody can talk to me.

I applied for PIP but got 0 points because I’m functional and independent. I have no physical disabilities. I can cook, eat, wash and dress myself. I can drive and with the help of satnav I can get around (going to unfamiliar places makes me anxious but I have ways to cope with that). I can read and I’m qualified to postgraduate level. I can express and understand verbal information - I don’t like talking to people and it makes me anxious and they dislike me, but the PIP criteria are focused on whether I CAN do it, and I can. To get even a single point you have to use an aid or appliance to communicate, or receive support with communicating, and I don’t.

There’s nothing in the PIP criteria which covers “I can force myself to talk to people for a short period and we can understand each other, but afterwards I’ll be shaking and possibly have a meltdown, and I certainly can’t cope with being exposed to people for an 8 hour shift every day”. PIP is only focused on the first part - ie I CAN do it. It makes no provision for the meltdown I have after forcing myself to do it, or the constant anxiety I feel if others are around and might try to speak to me.

I went back to my GP and she said “but you’re unable to work due to autism so you should get PIP?” But it seems that PIP doesn’t actually cover my difficulties. It’s for people who CAN’T function - it’s not for people who can force themselves to function but experience great anxiety and panic whilst doing so. It’s not for people who can function but get discriminated against by others and that’s why they don’t function. PIP is to pay for care needs - it’s not for people who don’t specifically need care but are excluded from work due to their disability, and it’s not for people who need money to live on because they’re not working due to their disability.

I have the option to appeal the decision and they’ve booked me in for a face to face meeting, but I’m considering cancelling because I don’t feel like I can show any evidence that I’m unable to function. Because I can function. Maybe only for short periods, with a lot of anxiety, and I frequently get discriminated against and blocked from what I want to do, but in the most basic sense I CAN function. Which seems to indicate that I’m not entitled to any benefits?

All though technically what ur saying is true I guarantee you 90% of people on pip are not spending their money this way as holidays, trips and going to the theatre just aren't possible I haven't been able to do any of these things in well over a decade due to disabilities. The majority of disabled people are not living that sort of life they spend the majority of their time in their home. Most can't even go to a supermarket to do a food shop so how do you think their going on holiday or on trips. I need about 15 hrs of sleep a day just to function this is not only due to disability but to do with side effects of the 64 pills I have to take a day just to stay alive. You honestly have no idea the realities of being disabled.

This makes me angry and is invalidating

I DO have a disability …..I DO work…..I DO get PIP ( standard DL and enhanced mobility) …..I DO go on holidays….trips….theatre….did you even read my post?? ….. I answered a post asking what PIP money could be spent on for someone who works full time ….at no time did I speak for the ‘majority’….not sure what relevance your post is in relation to mine?🤔🙄

Is your husband the wheelchair user mentioned in other posts (which may not be yours, sorry, I've got shit for brains)?

That question doesn't mean can he do it once. Can he do it over and over again with no ill effects, as often as he needs to, or does he have to resort to the wheelchair after a time? If he walks eg 50m does he have to rest for the remainder of the day? Could he walk 50m every day without fail or would he be in the wheelchair for 3 weeks after attempting it for 3 days in a row? That's the sort of thing you need to be telling the DWP, not just saying yes he can walk 50m.

No he doesn't use a wheelchair. Just a walking stick.

I completely agree. I'm reading this thread with a look of puzzlement on my face...why should you get benefits when your autism doesn't prevent you from living, working and supporting yourself?

I have scoliosis. It doesn't stop me living my life but I get a lot of backache if I stand up for a while. Sometimes if it's really bad I may need to lie down for a bit. Is there a benefit I can apply for?

It's a clumsy comparison for sure, but I think you can see my point. Where does the individual responsibility for dealing with one's own challenges/quirks/shortcomings come into play? Should public money be funding someone who, by their own admission, can work but finds it a bit more challenging? Most of us are dealing with something.

OP I could have written your post. I absolutely understand. I get standard care and high mobility. Looking at me, no one would have any idea of the struggle I have to function in everyday life, it is so debilitating. Every action, every interaction, is all consuming. You need to get advice on filling in the forms. You are absolutely entitled to it.

The ignorance on here regarding ASD is mind-blowing!

PIP is awarded to help with the additional day to day costs of having a disability and the criteria is renowned for being unfair on ND people. That said you’ve said you don’t need support in most aspects of life that this fund is for, you can cook, you can get around, you claim you function for the most part without additional support needs . You say need support in employment and interpersonal work situations and PIP isn’t for that (regardless of how wrong that is). They need to have a cut off point and sadly you’re the other side of it.

if you have national insurance payments over a certain recent amount of time the. You may be entitled to different contributions based benefits instead of income based ones. CAB may be able to help you

The system is inherently unfair for people who can do some things and not others or who cannot complete the required tasks consistently and reliably. If you want to succeed you need to understand the purposes of each benefit and language necessary for the applications to be successful. You’ll also have assessments to undertake too. It’s a minefield and it’s punishing. I’m sorry you’re struggling with it but from your description it does sound like you’re not eligible.

You've not worded the form correctly. My daughter got full PIP with panic disorder.

So you don't spend your pip on the cost of your disability. I'm also very interested how you manage to do all them things on high rate mobility when I'm assuming you can't walk more then 20 metres you must have an amazing partner/carer

I think this is misleading as it would be really difficult to prove fraud with PIP versus Universal Credit. It also depends on your definition of 'fraud' too and who you think should be legitimately entitled to claim PIP.

On this thread alone, you can see that many people believe the criteria for getting PIP is too stringent so disabled people are encouraged to talk up their condition in order to get the required number of points. So lots of talk of focussing on your worst days only and looking for any way you can (over)emphasise how your disability impacts your daily life.

This is where the question of fraud becomes tricky. If people aren't answering the questions completely honestly then are they being deceptive and therefore fraudulent? Just because the questions and process is deemed unfair, does that mean individuals are at liberty to effectively over exaggerate their condition in order to access benefits they otherwise wouldn't be entitled to?

The country's population is getting less healthy and already a quarter of the population are considered disabled. When you think that a a lot of the rest of the population will be economically inactive (children, elderly, sick etc) then that leaves an extremely high burden falling on a relatively small proportion of the population. It makes sense that we have to have some gate keeping on who can access things like PIP otherwise it becomes incredibly expensive and will start to reduce our ability to support other important public services that society (including the disabled) needs.

On this thread alone, you can see that many people believe the criteria for getting PIP is too stringent so disabled people are encouraged to talk up their condition in order to get the required number of points. So lots of talk of focussing on your worst days only and looking for any way you can (over)emphasise how your disability impacts your daily life.

It is not a matter of “talking up your condition”. Each question on the form is a simple question -“can you…” But the answer is only yes if you can do it “reliably, repeatedly, safely and in a timely manner”.

It isn't talking up disability. It is making the answer clear so that the decision maker, who may not have any experience of your condition, can understand the impact of your condition.

DD2 has ASD. She is 'high functioning'. She can't even decide what to eat for lunch. She can't go to an educational setting and the LA pays for an EOTAS package for her education. She can't have her therapy sessions at home because it's her safe space, but she also can't cope with travelling for therapy, so her therapist drives to our village and sees her in a small coffee shop. It's taken 18 months to get to the point that I don't have to be there, but only because now the therapist walks to our house and picks her up. I could go on.

Her PIP case was decided on paper. She didn't even have to go for an assessment because we had so much evidence of her needs. She was awarded enhanced rate for both elements.

DD1 has ASD and a brain malformation and other issues. She can walk and talk. She gets enhanced rate for both elements. Decided on paper without a face to face assessment because there is so much evidence of her needs.

"if you can do these daily living tasks I don't see how you can.scorepoints. Most of these tasks are done in the privacy of your own home not in public so it shouldn't make you anxious."

This shows a startling ignorance of how disability can impact people. Being in their own home doesn't stop the anxiety associated with these things. It's about executive function. The ability to chain tasks together. The ability to prioritise, cope with demands, make decisions, make choices. It doesn't matter where you are.

Obviously I'm not talking about all cases and can't comment specifically about your DC but it is pretty clear from this thread that there are people encouraging others to talk only about their worst days and to focus on when they're in burn out or how the disability 'could' impact them doing things as opposed to how it actually impacts them on a day to day basis.

I'm not saying the process is perfect but there are people clearly gaming the system to increase their chances of getting the right number of points and being eligible. We have people explaining how they use their PIP money for theatre trips or to buy top of the range equipment which aren't really what anyone would consider necessities when lots of other people cope without them. This is obviously upsetting for people that answer more honestly, don't qualify, potentially work and their taxes are being used to fund all these things for people who in reality are in not that different of a situation to them. If OP was to get a job then she would be in that exact situation but there does need to be a cut off somewhere.

I fund private crutches with my pip. They're not really essentials. I expect some people grudge me the private crutches.

I know bit there's also a different question that asks about going places unaccompanied, can't remember the exact phrasing but that can get 10 points and you can get it that way too, it's not just about walking

It's not just about how far you can walk for mobility

Well we could cut the face to face "assessments". So many people have to go to tribunal and win. I don't remember it being this bad under DLA.

You can get 12 points (enhanced mobility) if you have great difficulty planning and following a familiar journey. I get this because I'm both hearing and sight impaired and struggle to hear and see traffic.

Anyone?

I actually do…..however you are making far too many assumptions about me

I spent £180 of DD2's PIP, well DLA at the time, on a set of very good noise cancelling headphones. It means she can go to the dog training class with me because she doesn't have to talk to anyone and she can wear her headphones.

If she didn't have DLA she would have had to have ones that didn't really cancel the noise, or none at all. Then she wouldn't be able to go out at all.

Her dog is paid for by PIP. We're training her to be an assistance dog and the Local Authority has paid for the training programme as part of her education.

I agree something has to change. But I'm not sure it's right to be thinking about the people who have the temerity to claim the benefits that are designed to help them.

The law sets out who qualifies for PIP. Each term in a PIP descriptor has specific meaning. Where that meaning is challenged, an upper tribunal clarifies the legal position. There was recently a tribunal decision that stated that 'social support' for communication doesn't have to be given at the time of the interaction. So someone can be considered to have 'social support' if they see a therapist one week and use the support they got from that session to help them interact the next week. This means the DWP is having to revise many decisions where claimants were given low or no points for that descriptor, to see if it would have given them an award, or if it would have pushed them from standard rate to enhanced rate for daily living.

The person I was replying to says they get high rate mobility and that they go on holidays, on day trips and to the theatre. The only 2 ways to score 12 points to get high rate is either not being able to walk more then 20 metres or not being able to leave the house

'Cannot follow the route of a familiar journey without another person, an assistance dog, or an orientation aid. - Score 12'

No walking involved and can leave the house