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?

Speak to these people. You absolutely are entitled to PIP if doing basic tasks leaves you unable to function afterwards because of the stress and exhaustion they cause you.

https://pipps.co.uk/

You are definitely entitled.
Read the guides about claiming PIP on this website.

My son gets it.

It all depends on how you fill in the forms. And you must ask for a mandatory reconsideration, and a tribunal if that fails.
https://www.benefitsandwork.co.uk/personal-independence-payment-pip

Have a look at ESA as well. This is very much focused on ability to work.
www.gov.uk/employment-support-allowance

Can you not find non-people facing work? That will bring you more income and therefore a much better lifestyle than being on benefits.

I'm a technical author and work from home so I have zero contact with my colleagues except the odd Zoom call. There's also the opportunity to use platforms like Fiverrr if your creative or written skills are good. Just seems such a waste of your talents when you've got a post grad qualification.

They’re saying I’m able to function and communicate because I have a postgraduate degree and I have held jobs in the past (albeit briefly). Yes I can communicate, but I avoid it as much as possible because it burns me out. They said the fact I don’t want to is irrelevant - for the purposes of PIP assessment I CAN do it, therefore 0 points. And the main point is that I don’t receive any support that PIP could used to pay for.

I have autism (previously aspergers syndrome), and was diagnosed at age 34, only a few years ago. I scored zero points at application and mandatory reconsideration and 9 points at tribunal, so receive standard rate care.

I work full time too, and that didn't affect my application at all.

Also, I'm degree educated and that also isn't a reason to preclude someone from PIP

It sounds like you've just not worded your answers in right way.

Ask for a mandatory reconsideration and get citizens advice/ someone experienced with claiming PIP to help you.

Try to find a specialist support charity online who can help you. They may have written guides oe support workers who can help.

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

Whether I find work or not has no bearing on my PIP claim. I can receive PIP and still work (if I can get a job and hold onto it, but that’s a separate issue).

If you can work and function then I can see why benefits aren’t seen as needed. There has to be a cut off somewhere - benefits are supposed to be for people who cannot work or function normally, not an addition because life is a bit harder in some ways. I’m chronically ill and wouldn’t be entitled, and I understand why, I can work and support myself.

Are you claiming Universal Credit OP? PIP (as I understand it) is more about how your disability effects your daily living capabilities and really has nothing to do with work. (That is not to say you are not entitled to PIP).

Universal Credit Limited capability for work (LCW) and the Limited capability for work-related activity (LCWRA) are based on your ability to work or not due to your disability. https://www.understandinguniversalcredit.gov.uk/new-to-universal-credit/health-conditions-or-disabilities/#:~:text=You%20have%20limited%20capability%20for,example%2C%20by%20writing%20a%20CV.

CAB are great with assisting with these forms. There's a knack to filling out these forms (point focussed) which a layperson just doesn't know.

Your ability to work is irrelevant to whether you’re entitled to PIP. You can work and still receive PIP.

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.

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”.

I can't help with the PiP advice, having similiar issues with DD and potential for applying for DLA.

Jobwise though, have a look at admin type civil service or the arms length bodies roles they tend to be very flexible and still lots of remote jobs to be had or have it added onto your workplace passport as a reasonable adjustment as long as you can use Teams even if your camera is off you'll be fine. It's easier to progress once you are in a role and find an area you are interested in

No, that’s not right. PIP is for those who can work. And the OP clearly cannot function normally- which is why she should be entitled.

No. I’m not entitled to Universal Credit because my DH works. Apparently he has to support me. As far as I can gather, PIP is the only thing I can apply for which wouldn’t be denied to me because my DH works.

Not PIP related but you may find that you have more success in a job OP if you are open about this and request reasonable adjustments. Most employers will be happy to accommodate you. As an example we have recently hired someone who faces similar struggles, to enable her to work at her best and happiest we have agreed that she can work from home 3 days a week, on her 2 office days we have made a separate office available to her if she would prefer to sit there away from others, and on her request we have notified the rest of the team that if someone wishes to reach her then they must either email or Teams message her first to “schedule a slot”, no calling her or walking into her space randomly.

These were all adjustments made after an in depth chat with her about how we can make this work for her! :)

I am seeking support separately from a charity which helps disabled people find appropriate work. But regardless I should (or so I’m told) still apply for PIP.

Have a look at fightback4justice
They are a non profit group and there is a small charge (£4.99-11.99 a month but you can cancel whenever) and have a huge success rate in helping people get PIP

Fightback4Justice
Tiktoker: Mr PIP Hero
NeurodiverseLife (approach this one with caution as it seems to be up in there air if she's legit or not but is still operating)
CAB
Lawesome

All of these charities/people can help with getting PIP for ND people. I get it for ND (albeit only a small amount). If

My adult DS was refused initially and at appeal. This was despite being awarded DLA for life aged 13 ( 'life' has a different meaning in the benefits system evidently). When DLA was scrapped for adults he had to apply for PIP and was refused. Reasons given included the fact that he can drive and therefore can perform complex tasks.

The fact that he was severely limited by his HFA ( formerly Asperger's), couldn't find suitable employment despite having a degree, rarely went out, misinterpreted social cues, high anxiety, depression etc etc cut no ice with the PIP assessors.

They seemed to have a tick box mentality and the vaguest notion of autism. I'm being kind there.

He does now have a job where he works from home (ours), so that's positive, but will probably never be fully independent. But he qualifies for nothing.

So good luck @Saramia with any application you make but be prepared to be disappointed. Of course, you may get a sympathetic assessor - I hope you do.

The fact that he was severely limited by his HFA ( formerly Asperger's), couldn't find suitable employment despite having a degree, rarely went out, misinterpreted social cues, high anxiety, depression etc etc cut no ice with the PIP assessors.
I too am severely limited in the same way. But PIP seems very tightly focused on physical disability and whether you CAN do something to a very limited extent. Not going out, anxiety and depression, inability to socialise, meltdowns every evening due to the stress of the day - these don’t seem to be covered under the PIP criteria. I was told to apply “because autism prevents me working full time and maintaining stable employment” but what the doctors said doesn’t seem to mesh with what the PIP assessors said.