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'm lifetime physically disabled with more than one disability. For most of my life I managed round things on 'my actual wage' 🙄 and then came the big one that put me into a wheelchair.
I now can't earn enough to make working pay without some support towards the additional costs incurred doing it. What would you have me do?

You could argue I should be made to do some sort of job from home and then I wouldn't need transportation, equipment or even clothes. But even then you'd have to invest in training me because I'm running on my original skill set.

PIP allows me to work, pay basic bills, be a tax payer and contribute in life.
No PIP = I stay home, don't work, live off benefits, not a tax payer, but financially better off.

No cleaners etc here, Pip's covering additional expenses of disability equipment, consumables, and transportation. It's way cheaper to allow me PIP to work, than keep me on benefits not working, and some of what I do enhances others lives too. I don't resent others benefiting from what's taxed from me whether I'm supported to survive or not.

When PIP asks "can you do xyz..." the unwritten part of that question is "... without pain, discomfort or harm to yourself or others?". So you're answering yes when you should be answering no, because it causes you psychological harm to do these things. You effectively can't do them.

PIP isn't about whether you can work or not. It's about how your condition affects you in daily life and whether your daily life is sufficiently negatively impacted by your disability to qualify for PIP. Universal Credit is for if you can't work due to your condition. You should apply for that too if you haven't already.

You won't get PIP for having to sit in a cupboard on your lunch break at work. If you have to eg sit in a cupboard under the stairs every time a plumber comes to fix a leaky tap in your kitchen and someone else has to deal with the plumber, that's the sort of thing that gets you PIP.

You may need some help with the application form from someone who understands how to fill them in and all the "unspoken" elements of the form. Also help from someone who knows you very well, because if you don't have enough insight into how things affect you, you won't be able to answer the questions accurately.

No it’s not.

But Dd has been diagnosed as in full burnout by an nhs ASD psychologist. She is beyond exhausted, the closest thing to it is severe Chronic Fatigue. So she can’t clean a house. She’s too exhausted to work or think. She can’t go to school.

Entirely different situation.

The suggestion was that I claim PIP for ready meals, a cleaner and taxis. Presumably since your daughter is school age she is living with you and therefore has no need to be running a house.

My brother had a kidney transplant, over ight dialysis for months, was out of work for months at a time and wasnt able to claim anything, the system is ridiculous.

If your health care professionals are saying you should be entitled and you’re being fired because you can’t function adequately in the job I’d say you need some help
completing the form to reflect your disabilities. 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).

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

This.

When I had to claim PIP on the advice of a GP, I was told to write my answers so they reflected me at my absolute worst. I was awarded it first time, and at the higher level, something I was surprised about (but no less entitled to).

I am disabled. Lifelong, physically, progressively, on 5 lots of meds a day without which I would have about 3-4 days to live.

@Saramia I'm fairly well versed on the issue of PIP and Autism having dealt with them for many years. I found that the Welfare Rights department in my local council were brilliant assisting us with a reconsideration, which we won. They will help you complete forms in the way that PIP requires for a successful outcome (for you). Failing that, if you feel stuck, dont give up and please feel free to pm me. Best of luck.

Most people have clean houses and their laundry done because they're not disabled and can do it themselves. Or because they work all hours and outsource that type of thing to someone who they can pay to do it for less than they themselves earn per hour.

If a disabled person who can't do those things for themselves didn't pay someone else to do it, it wouldn't get done at all. So yes, PIP being spent on this raises them up to the same standard of living (ie clean home and clothes) as everyone else.

My DH had Citizens Advice help and still did not get PIP. Needs help to shower, has a free NHS wheelchair, and appealed. He has applied twice and refuses to do so again. His cognitive functioning is fine, so he can plan journeys, drives and manages his money. His issues are a physical disability. And he just can not get enough points as too many sections he is fine with. The questions are written for people with cognitive issues far more than physical disability.

The ableism and internalised ableism on this thread is disgusting. As is the way so many disabled people in need of support have been turned down for the benefits they are legally entitled to.

I suffer with periods of this, it's called muscle tension dysphonia. The more stressed I get, the harder it is for me to speak.

@doublec that advice is wrong. I believed it for years too but there are cases of people being done for benefits fraud for describing their worst day. You can describe your worst day and still include its variable but you can't imply you are that bad all the time

@Saramia how did you manage going to university and school?????

She’s 17.

You said someone with ASD was cal-able of cleaning the house. She is not capable of this. Not due to her age, but due to severe fatigue.

She can’t socialise, prepare meals, plan or undertake a journey or talk to certain people. She got awarded first time, in fact the assessor moved her up on some points.

People we know can never believe my DH is not entitled to PIP. People we know with high functioning autism and ME who get PIP can do far more than my DH can. But that is the way the system is rigged. If he was on his own he would have to pay for a cleaner and could only manage strip washes.

When PIP asks "can you do xyz..." the unwritten part of that question is "... without pain, discomfort or harm to yourself or others?".

I disagree with this, cooking, walking with discomfort / pain = being able to do it and doesn’t / shouldn’t entitle me / you to PIP.

I’m in constant pain from endometriosis. I’ve never ever believed that should entitle me to PIP

Also OP if you really are being fired for things like choosing to sit in a cupboard on your unpaid lunch break you need to look at disability discrimination legislation. You don’t have to have worked there 2 years to qualify. Some businesses treat their staff horribly if they can get away with it!

Querying benefits and the threshold society should impose for somebody to claim them is not ‘disgusting’.

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

I have never, ever seen a single person (even the very conservative) say there should be no welfare state, that disabled people should be left to fend for themselves. Every person I have met is happy for their taxes to go toward people who are disabled - people with quadriplegia, Downs Syndrome, cystic fibrosis or severe learning difficulties for example.

But the number of recipients has absolutely skyrocketed due to people claiming for ‘invisible’ disabilities such as anxiety, ADHD and milder ASD. These conditions in many cases rely on self reporting which has made it a dodgy game frankly and undermined applications from people who really are very disabled with those conditions.

We can’t act like this isn’t the elephant in the room. Not only are we sinking under the cost of paying these benefits, it means more people than ever are opting out of the workforce so there’s even less taxes to pay them.

If we want a generous benefit system we need to cut the number of claimants.

@Chewbecca Not what my DH was advised. He is in pain with everything he does.

"milder ASD"?

Is it? Or is my disability more socially acceptable/provable than Op's? (no disrespect to Op)

The differences between me and Op are I'm not qualified to postgraduate level and don't have issues with verbal communication with others, and I physically burnout rather than psychologically. I'm also lacking a partner.

I can however do all those things she can do and probably a few more. I need all sorts of odd things to do them, but do them I can.

I'm also hugely discriminated against getting work, (I have to be self employed as no one will take me) and let go frequently once they realize the extent of my disabilities, regardless of the quality of my work being unchanged.

There is work that Op will be able to do, but she will be highly unlikely to find it until someone levels up the playing field so she can look at what she can do, and what she needs to make it possible, not what she can't.