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?

Being unable to do a full time job for any reason whether it’s because of communication problems or physical problems is not ‘high functioning’ (although of course you may be very high functioning in other aspects of life).

I hate the term "high functioning" for health conditions because this is what non-medical people thinks it means.

It's not meant to mean high functioning when compared to an average healthy person. It also doesn't mean "has the condition but is unaffected by it". It means high functioning compared to some other poor souls with the same condition who are worse off.

Someone with a "high functioning" aspect to their diagnosis does not necessarily mean they can work or that they're not disabled. I think the term causes problems and shouldn't be used. Nobody with a diagnosis of something is unaffected by it. Nobody goes looking for a diagnosis of something they have no symptoms for and are not affected by. If they have no symptoms and are unaffected then they wouldn't meet diagnostic criteria.

My best friend is autistic and yes it is mild. She works full time, has friends, cleans her own house, cooks her own meals and doesn’t claim
anything. The main effect on her life is she prefers to spend most of her weekends and evenings alone decompressing, and devoting time to her special interests. She also struggles in large groups so has selected a job where she works independently most of the time.

Nice lecture. Must have missed the part where I said I also have ASD

It really should be something like "Autism with / without learning disabilities"

TBF yes I did, but I wouldn't do you down if you needed financial help as a result.

@PurpleBugz Well, that was the advice I was given the the DWP and the person I deal with there, who told me I was entitled to claim it, along with one of the medical consultants I am under. However, that said, given my writing is barely legible due to peripheral neuropathy, something that also leaves me unable to prepare food safely, type for extended periods of time, along with various other issues that affect me most of the time, I was not just writing about me my worst.

I think the issue is that for some, and it seems like this is the case for OP, that when we fill in forms, some can underplay our issues.

I know I did when I was told I was eligible for PIP. It was only when my case worker went through a few things with me that I understand how to formulate answers. With regards to me, there were parts of the form I didn't complete as they weren't applicable to me anyway.

@GoodnightAdeline
I think people forget benefits are money taken from people who have earned it to give to people who cannot earn their own.

This just isn't correct.
PIP is given to attempt to level up the additional expenses of disability with the non disabled to create a more even playing field. Consequently physically disabled people are increasingly expected to pay for all sorts which used to be provided by the NHS from it.

My Daughter has just been awarded PIP at tribunal. She's at university doing a combined masters - they initially used this as a reason to deny the claim and she was only awarded 2 points. She has Autism and OCD.

You're right, it's very hard to explain how it all affects you but they want to know if you can do things in a reasonable amount of time and then repeat it regularly. If a conversation means you can't function properly for 24h then it's not reasonable to expect you to do it regularly.

If your transport went a different route would it affect you? If there was a diversion? Does the anxiety you feel make it hard to communicate? Do you need reminders (in person or alarms) for medication? This is what they want to know.

The rules changed recently for the mental health aspect of PIP so you lose nothing by trying. Be prepared though, it could take months. Took 17 months for us!

I'm physically disabled and I have ASD.

I get Pip even though I am a higher rate tax payer.

It lets me pay for a cleaner (I can't clean), lets me pay for a dog walker ( I can no longer walk) and it lets me have ready meals and quick food stuff when I'm in shutdown.

It has also been a gateway benefit for me - I have been able to get a BB, and I have been able to get reasonable adjustments in work because of getting PIP.

Yes but in a lot of cases it’s not evident where the extra money is needed

My DH has a BB but can hot get PIP. You do not need PIP to get a BB.

But where is that money coming from? That pays PIP?

My council use 10 points mobility as the level to get a BB, without it I'd have had to have letters from my consultant and supporting evidence. It was significantly easier to get because I could just send copies of my PIP award.

You don't need pip to get reasonable adjustments. You just have to have (with exceptions) a long term condition to be classed as disabled therefore entitled to reasonable adjustments.

It was easier for me to get those adjustments once I had PIP - before that I'd had to get letters from medical professionals involved in my care, now I just say I get high rate pip and it's easier.

Clumsy phrasing on my part, apologies.

I mean I have to purchase certain (more expensive) food and drinks to help with my condition. It’s not a small amount, probably works out at about £50 a month. I also have to get a taxi to my hospital appointments which isn’t cheap because I arrange them early for work purposes and the public transport here is dire. I pay these expenses myself and wouldn’t claim for them because shit happens and probably everyone has a way in which their life is unavoidably more expensive than the next person’s.

At what point do we say the expenses incurred are so great and unavoidable that they need to be paid by public funds? And what constitutes unavoidable?

It comes from everyone including other disabled people on PIP and many other kinds of taxes. Your taxes and many others aren't ring fenced the way you are seeing it. Even NI gets dipped into for other government spending.

But in your case I can see where it’s being spent even though you don’t claim it. I have a family member with ARFID who needs different foods and can see where that money is needed. But so many people don’t have additional monetary needs.

I understand but I’m commenting on how people see benefits now - as an unlimited pot that can be dipped into just because somebody says they need the cash, and nobody should be allowed to query them - versus a finite amount earned by working people that should be going to the most deserving.

Oh so it's deserving and undeserving disabled is it?

I'm a working people ....

Well done for you
Sadly some others need these kinds of support, let's not race to the bottom though eh?

It’s not a race to the bottom tho is it. It’s people claiming benefits they don’t actually need

Where’s the evidence that people don’t need it though? I seriously doubt anyone is going through the assessment process without good reason.

It’s not just the PIP money itself. It’s that it can act as a gateway to other things. For instance, it’s often the only thing that’s accepted as proof of disability to access some adjustments.

I don’t work at present, largely due to discrimination. I either don’t get hired at all, or I get hired then sacked for being autistic, or I quit because I’m being bullied for being autistic. My ability to work doesn’t mean I can persuade people to let me work for them.

You need to reframe this more accurately, it's full of positive/wishful thinking at the moment. Truth is you can't work because you can't obtain, or hold down, a job. And that is due to your autism. Which is causing communication problems, extreme anxiety (and the resulting disruptive/unacceptable behaviour ie weirdness/ meltdowns/verbal aggression in the workplace). Your GP is right, you are unable to work due to autism. So don't go telling benefits agency "I can work" - it's inaccurate, you can't.

They are using my education to say I’m capable of travelling to uni, talking, reading, writing, and therefore deserve 0 points.

Yes, they will use anything and everything against you. It doesn't mean they're right. For a start, you're not at university now. How you were in the past doesn't necessarily reflect your level of capability in the present.

PIP is to pay for care needs

It's not. It's to pay for any disability related expenses. This could be eg used for paying extra rent to enable someone to live in a nicer part of town, where they're less likely to be mugged when they go out, because the disability makes the person an easy target. Or anything from eg having the heating on all day and night because it reduces pain in someone who suffers from pain. To paying for a taxi home from the shops because anxiety at being surrounded by people is preventing someone from getting on the bus at that time.

And the main point is that I don’t receive any support that PIP could used to pay for

You don't have to be receiving care or support services and claiming PIP to pay for them. PIP is for the disabled person who needs additional care or support to live a normal life, regardless of whether they receive that care or support. Maybe the person needs someone with them when they go out due to anxiety preventing them leaving the house alone or due to their own behaviour when panicking or because someone needs to push their wheelchair. Maybe they don't have this support so they stay home all the time. They're entitled to PIP either way.

What some people do is if they're having to purchase services (let's say it's eg a carer who comes in to feed them, something that can't be ignored without death occurring, so they're paying for it even though they're eating only cheap pasta and never turning the heating on, to afford the carer), they'll use those invoices from the carer as evidence that they need care and somebody else is having to help them with ordinary life. They'd still be entitled to PIP even if they didn't receive the care. It's just easier for the benefits agency to believe when there's invoices to prove it.

But whether you “can” do it at all is only one factor. You need to be able to do “it” “reliably, in a timely fashion, repeatedly and safely”.
This - please do a MR and get support with it.