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?

That's not what pip is for.

Pip is work agnostic. I get pip even though I work to support with the additional costs due to my disabilities.

That's great, I'm pleased you got it without a fight. So many seem to have to jump through hoops designed by people without proper experience of conditions

It's hard to get people to understand how you can be a clever person contributing to society but so low in executive function capacity you sit and can't get up to feed yourself because you're too overwhelmed to decide what to make, where to start, and the shame of that paralysis because you don't understand yourself why you can't just do it. As an example

Or how you sometimes can come up with a great plan to execute a project, and yet the same day you can't answer a simple email.

The poster is correct PIP is about how your disability affects your daily living eg can you wash/shower yourself, can you cook a basic meal, can you dress yourself, can you read etc. if you can do these daily living tasks I don't see how you can.score points. Most of these tasks are done in the privacy of your own home not in public so it shouldn't make you anxious. If you can walk you won't be entitled to the mobility aspect either. You might get a few points for the social question about going to unfamiliar places but you need 8 points to get an award. Even if you got a few points for being anxious in places outside of home it wouldn't be enough for an award. PIP isn't about if you are able to work or not and I'd have expected consultants to know that tbh. On UC there is Limited capacity to work but as you say you are married and your DH is expected to support you. My DH is in a similar position to you OP. He had a brain tumour making him almost blind as growing around his optic nerves and pressing on his pituitary gland and so affecting most of his hormone functions lack of adrenaline, affected Testosterone, affected thyroid, affected his energy levels and he can't always cook himself a meal or shower himself as he's exhausted a lot of the time but he can read, deal with finances, find his way around unfamiliar places and is ok in social situations so he only scores 6 points. He's had tumour removed now but his endocrinologist can't seem to balance his hormones back up. He can't claim UC because I have to support him. I suppose they have to draw the line somewhere.

You can use it for anything….holidays….a car……trips….theatre..,,,it’s doesn’t have to be on therapies

I think that's the point pp have made. It would be on things you take for granted just living

That's just straight up incorrect information about the mobility component

The fact that he can do it isn’t the only factor. What also matters is if he can do it reliably, safely, in a timely manner, repeatedly, etc - there are four categories.

On the PIP form there isn't a question about can you go to work or not though. There is a question about social situations in general. OP might score some points on this but she'd need 8 to get any payment.

I agree re the info above - @caringcarer you should contact CAB and/or a specialist charity to do with your husband's condition and see if they can advise.

My Dd gets higher mobility award. She can walk fine. It’s the fact that she can’t take buses/trains that resulted in the award.

They key with PIP is that you have to answer as if it's your worst day.

So on your worst day can you cook? Or do you need support? Can you bath/shower or does it feel too much? Etc.

I know I struggle massively with those things when I'm burnt out.

It's not about whether you can do the activity. It's how you do it. Examples below

1/Washing and bathing: It takes me longer to shower because of ocd. I have to do things in a certain order. If I go wrong with the order, I am upset and have to start again. Equally answer this thread other way round if you struggle to keep on top of your personal hygiene

2/ Mixing with others: I find it extremely difficult to mix with others because of my anxiety. My thinking is different from others, and I feel out of place and anxious. I stim and flap my hands.

I don't socialise with others as I feel they are judging me.

Even going to the shop takes immense effort. I go when it's quieter and will leave if it is too busy. I use self-service so I don't have to interact with the assistant. Use the example you gave of having lunch in a cupboard

3/ Preparing food: Because of depression and low motivation, I struggle to motivate to cook. I usually eat easy food. I struggle to prepare it because I get mixed up with the order.

4/ Eating and drinking: Because of the autism I struggle with foods. I go through stahes with certain foods when it's all I will eat. I become very anxious if I can't get the food I want.

5/ Planning and following a journey. Because of the autism I struggle with planning and getting very anxious. My breathing is laboured, and I get very anxious and panicky. I have palpitations and sweat. The effort of getting ready to go out is exhausting. Even when I'm outside, I need someone with me because of the anxiety.

Those 5 examples above should give you an idea. PIP is about the help you need, whether you get it or not.

Incidently, you tell them everything on your worst day. If they ask you about good days, you tell them you don't have them.

Their idea of a good day is not the same as ours. We adjust without realising to, how we are. I hope this helps.

Pm me if you want to talk privately.

DH has a PhD and has high rate PIP. Doesn't matter one bit. You seem to be filling out the form incorrectly. You get points for when you can do something with an aid. E.g. you can get around but you require a sat nav or require extensive planning beforehand. You need to apply your difficulty to every section you can even if repeating yourself. So in travel/planning journey - you cannot take public transport etc as get anxious/can't ask people directions or for help. If you feel forced to you have a meltdown which includes x,y,z. You need to answer the questions in a very particular way. Managing money - you struggle going into branches to sort out, call people to sort out bills etc. Do you require anxiety meds or ask someone to do it for you? All that applies.

This and they can mix too. E.g. meeting with others you have a limited number of safe foods so can't go to restaurants/parties etc as anxious they won't have your safe foods.

If you saw my DH you wouldn't think him seriously disabled. He has a PhD, works full time. But the PIP money is insanely helpful in managing his condition (he has severe hearing loss). At work he is expected to be in meetings on zoom using headphones - which he can't fit hearing aids under. PIP allows him to get better private hearing aids with bluetooth that mean he can link devices into them like headphones. His phone, laptop etc. It's what allows him to make phone calls, do meetings etc. It contributed to the refit we did on our house with special fire alarm system to make sure he would be alerted as obviously he can't hear it. A special alarm clock that vibrates on his wrist and under his pillow to wake him up. Taxis/fuel costs etc when he can't take public transport as he can't hear announcements or communicate well. Or to pay towards someone going with him to help him. He's ended up stranded after getting train in wrong direction before after last minute change in platform announcement he didn't hear. I had to do a 5 hour round trip to pick him up as he couldn't cope with trying to get back alone. That's just a few of the things PIP has helped with. It's towards costs others don't incur.

I don’t think you should be coaching people and giving them box ticking ideas. They need to answer honestly from their own position.

"If you saw my DH you wouldn't think him seriously disabled. He has a PhD, works full time. But the PIP money is insanely helpful in managing his condition (he has severe hearing loss). At work he is expected to be in meetings on zoom using headphones - which he can't fit hearing aids under. PIP allows him to get better private hearing aids with bluetooth that mean he can link devices into them like headphones. His phone, laptop etc. It's what allows him to make phone calls, do meetings etc. It contributed to the refit we did on our house with special fire alarm system to make sure he would be alerted as obviously he can't hear it. A special alarm clock that vibrates on his wrist and under his pillow to wake him up. Taxis/fuel costs etc when he can't take public transport as he can't hear announcements or communicate well. Or to pay towards someone going with him to help him. He's ended up stranded after getting train in wrong direction before after last minute change in platform announcement he didn't hear. I had to do a 5 hour round trip to pick him up as he couldn't cope with trying to get back alone. That's just a few of the things PIP has helped with. It's towards costs others don't incur."

I am totally deaf, a cochlear implant user. I know only too well of the daily frustrations of your husband. I can't use zoom either. But no, I wouldn't claim benefits for my deafness. And as far as I'm aware, NHS hearing aids have Bluetooth.

I think you need to sit down and go through the criteria for pip . PIP is to pay for costs associated with your disability not to replace universal credit. I had to go to tribunal as my disabilities mean my ability to do things changes day to day . It took 2 years for my pip to go through the tribunal process and it was horrific. I went to tribunal with 6 points for care and none for mobility and left with standard rate for not for both. PiP for me funds my counselling , pads for my bladder condition and helps towards an adapted car that allows me to work . PiP is not there to lived off and shouldn't replace UC

Good for you? Do you want a medal for coping what you perceive to be better than others or for a second does it make you think how lucky you are that you don't feel you struggle and empathise with those who do rather than judge? Asking and receiving help isn't weak or begging or sponging. A lot of the time it's realising you've been struggling unnecessarily and there are things that you can have to ease that struggle from the disability you did not choose or sign up for

You absolutely can but the forms are hellish. My son gets pip and he works and drives but he is most certainly disabled and we can't for example, move away for retirement as we still need to guide him through life.
Contact Fightback4Justice or the NAS and they can help you fill the forms in. I didn't think son would get mobility but he only drives where he knows and we practice routes with him. Also he can't drive if he is in shutdown for safety reasons. So although he appears mobile, he is completely different to my NT son who also has a job and drives.

When you fill the form in you have to give the worst case situation with examples. Be aware that after the interview, they will turn you down. They do this to everyone sothen you appeal, poss turn down again, then go to tribunal and they reconsider sharpish! Fightback4justice got us through. Cannot recommend them enough.

We were accepted first time.

@goodnightadeline Those were generic ideas. I am not coaching anyone.

The descriptors are not straightforward. A person trying to fill it in on their own has no chance. They are ill enough to be claiming it.

I guess you have never needed benefits or help. It is designed so people don't get it.

The government shut down all the disability charities and helplines when they got into power 14 years ago. They vilified the disabled. Be glad you don't get it

@Lavvybas there is a question which asks can you walk 20 metres? You have to tick the box I think it was under 5 metres, under 10 metres, under 20 metres, under 50 metres or something like that.