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?

I seriously doubt anyone is going through the assessment process without good reason.

Do you?

It amazes me that so many posters on here think nobody would ever do anything disingenuous for personal gain - apart from transgender people that is (and I’m gender critical).

I said the most deserving.

Well that’s illegal for a start 🙄

You are aware you can't just get benefits because you claim you need them right?

I had to (well my mum did) fill in a form for ESA and then attend a reassessment to show I suddenly hadn't grown out of the disabilities I was born with.

I also had to prove (and will again in 2026) that I was still disabled and my disability entitled me to pip after being on DLA previously.

You can't just say you have a disability therefore need pip. You're assessed by someone who hasn't the first clue about your disability.

It always has been sadly.
It is tbh one of the reasons I've fought tooth and nail to stay a working person, no matter what. I know I'm lucky to be able to at any level, but I can see what happens to those that can't.

The fact that your Husband has been prescribed a wheelchair on the NHS should be proof that he has significant problems with mobility. He is obviously unable to walk in a safe, reliable manner, repeatedly. Maybe his GP could help provide a letter to help his claim, should he find the will to deal with this system again. It is a lottery, as far as I am concerned.

@Saramia I would definitely ask them to reconsider. My DSD is autistic and she was initially turned down, but granted it upon appeal. She works and can communicate, but what they didn't take into account was to get to work, I had to do the bus route with her every day, 4-5 times a day before she started so she knew what to do. At least once a week we have to go rescue her if the bus is late or doesn't turn up as she quite simply doesn't know what to do.
We have to ring and tell her when to leave the house for work, when she needs to her ready for work, when she has to go to bed as she cannot tell the time at all

She can dress herself, but we have to tell her to change quite often as she can't gauge what is appropriate. She can communicate but doesn't get her words across very well and will stumble and stutter, especially if she has to talk to a stranger. She can wash herself etc, but has to be told to go in the shower, or when to wash her hair, left to her own devices it will be days or even weeks before she thinks she needs to shower.

I'm not saying this is what the experience is like for you, but perhaps if you can give your answers context it may help. So, I can travel to work but......, I can work but.....

That is down to you, and what you believe. Women have claimed for that. It is not what your condition is called, but how it affects you. You may be able to do xyz with it, another woman could be totally incapacitated with it.

Yes it can. My DSD has autism and she has no concept of cleaning at all - despite many years of trying to drill it into her!

This thread is a depressing read! I clicked on it, as my DP has ASD and should be on PIP. I thought there would be good advice here. Nope... just a lot of ableism.
He is postgrad educated and WFH (with a LOT of adjustments). He can't manage his work time though, so essentially works from 8am to 11pm with a lot of naps in between.
He is burnt out at the moment, so is off sick.
PIP would enable him to have healthy meals delivered (think Hello Fresh etc... he can cook a meal, but it will be shite.). Maybe get a cleaner (he just *doesn't), and at times his personal hygiene is shocking. I have had to go round and beg him to shower at times. He has huge issues with executive function.
He also has public meltdowns where I have been glad to have been there as I don't know how it would have gone otherwise.

And the process for applying for PIP is rigorous and undignified. I was nagged for years by my CMHT to apply, but they also said the risk to my MH was also massive. I never bothered.

Like a PP said, PIP is also a gateway for other help too.

nothibg to do with my beliefs

Get help to fill out the forms, ask lots of professionals to write letters
Of support and prepare yourself for a long battle.

I have letters written by: hospital clinic, GP, former employer, current employer, manager of my block of flats, daughter.

I'm educated to degree level and in my 50s and my GP advised me to get help with the forms because they are so difficult to do. Citizens advice helps as do local charities.

I'm also autistic plus I have ME/CFS. I have been turned down for PIP and ESA. I'm now going to tribunal for both. It is a total disgrace.

I am currently struggling to work 13 hours a week in a minimum wage easy job yet the DWP has awarded me 0 points on both benefits.

Can’t wait until the 40% of current year 1s with a ‘disability’ are all needing this extra money 🙄 I have ASD and endometriosis and I struggle every day yet I would never ever access any additional benefits because I do not need them. Country is fucked

We're not talking about religion or politics here !

I wasn’t either 🙄

You might be able to afford not to claim, or think you don't need them... but some people do need that help. I get the impression that you are too proud to claim. That is ok.
But the people claiming are doing nothing wrong. And they are certainly not fucking up the country.

What is that supposed to mean are you suggesting that parents of children with Asd and ADHD etc do not have higher cost associated with raising them and therefore rightly the child may qualify for dla.

If there’s genuine costs then yes. But most… absolutely not

Pip is a benefit to help cover the cost of being disabled not to cover a wage that's where other benefits come in. I get pip and the money is spent on hospital transport, private therapy, a cleaner, and extras like delivery costs as I can't leave the house and aids to help me around the house.

i have autism and claimed op, definely as others have said op go to a charity or one of the online services as how to write it is difficult for the appeal, make sure to get letters from doctors etc and anything similar like that like if any family members help you get them to write what they do.

of course there are genuine cost it's not possible to raise a child that meets the criteria for dla and not have additional costs. Very often those costs are not being able to work anymore to care for the child.

No it’s a concern about how the country will afford it. Do you honestly believe the numbers are sustainable?

🤣🤣🤣🤣🤣

my point a million percent then

This thread is horrible.

I’ve paid tax and NI for 39 years and still paying.

I begrudge no one PIP. It’s fucking impossible to get anyway. The attitudes on here make me 🤮. Just destroy all disabled people, that would solve the financial burden to the country wouldn’t it?

ASD is a disability. Even ‘mild’ ASD. It destroys people’s lives in ways you cannot understand unless you’ve first hand experience of it. ‘Mild’ ASD is not mild. Try looking on the EBSA threads or SEND threads.

There is no choice some children would not need dla if services and education were better funded. It's far cheaper for the government and the tax payer to fund dla than to provide service children need. However the majority would still need dla it's not a question of is it sustainable, we as a civilised society need to support disabled people full stop.