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?

PIP assessors do look for any reason to decline, and so for as long as you are able to do something you will always be declined.

I'm 'high functioning' autistic. And I do t get PIP. If you can't deal with people there are other jobs. I work from home, timetable in time I can decompress, I know what I can manage and I know what I can't. It certainly limits my earnings potential and certainly costs me more to accommodate my needs but I do not feel I'm disabled. I have an autistic son who I absolutely feel is disabled and should be recognised and given the appropriate benefits due to this. I think this is why I think if you consider yourself high functioning then you shouldn't claim it- it so many high functioning autistics are claiming it it makes it much harder for those with higher support needs.

High functioning as a term will upset a lot of the autistic community. It minimising our struggles particularly as they are variable you can be high functioning one day and then low functioning the next as you burnt yourself out- as I see from your post you can understand how that feels. And it's signalling this type of autism is better than other types.

I would recommend really looking I to autism. Your tolerance window amd any sensory sensitivities you have been suppressing etc etc. And build your life aground your needs. You may find you suffer burnout much less and actually can function. Then you too may be offended at the idea that it's the diagnosis that should get you help not your actual needs

My dd is being referred.
But i can understand the pip descision in your case. As you can do these things. A bit like at uni doing presentations you can force yourself.
I find ihave the same issue as you being disliked. And it makes inferviews awful. I just cant answer questions in the right way. And the realisation im awful makes the anxiety worse and then trying not to say the wrong things.

Its true the pip isnt going to be particulatly helpful as there is no care or help for interviews or workplaces etc. And people accepting you is what. is needed.
Tbh the adjustment needed would be (for me) tp not have to interview and just be judged on past work and qualifications.
The idea they can actually pick the best fitting person is imho cpmpletely ludicrous anyway...

It does sound like others have been given pip for aspergers though.

I thought PIP was more about additional costs you incurr due to your disabilities, it’s not means tested so not really connected to whether or not you’re in work,
if you can’t work due to your disability then that’s more a universal credit/ESA thing I believe.

I had similar to the point no pip meant UC said I had to work ….. I said I can’t they wouldn’t accept it so I said fine.

I made my CV which was BRUTALLY honest - that I can’t speak due to selective mutism most of the time , that I can’t leave the house most days , that I can’t work in a team etc etc etc. I also have no qualifications. I’ve never been offered an interview but UC can’t sanction me as I’m applying for all the jobs they tell me to and more

My ASD HF Dd is on full pip. She can’t catch buses and gets overwhelmed going on them on her own.

She struggles to iniate conversation and can become mute. It’s how you word it.

PIP is to provide funding for anything additional you require due to your disability. As you’ve said repeatedly you can work and get it and so in your case I struggle to see what it’s needed for.

Also, you can’t get sacked for being autistic. it’s illegal.

This happens to me all the time it’s as if my brain shuts down my throat constricts and the words are trapped

As has been said, eligibility for PIP has nothing to do with whether you work or not. Nor is it means tested. The fact that you can’t see what the money would be used for is neither here nor there. And of course you can be dismissed for being autistic if it means you are unable to do the job. Loads of disabled people lose their jobs on capability grounds, which is perfectly legal.

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

well tbf, it sounds like you can’t. it’s not sustainable, you couldn’t go every day for 8 hours and you can’t do it in a way that doesn’t severely limit your life, so i would say that in fact, you can’t.

so I’d view ‘can you go to work everyday’ as ‘can you go every day for 8 hours to a work place and socialise and do all the things you need to do during the day and still function?’
instead of ‘can you physically make it to the work place and then go home?’
so in that case you would answer no, I’d have a meltdown, and cry and shake. I would be unable to go every day.

I suspect you need help with the form and that you’re answering the questions very literally.

I have 2 boys with autism (high functioning). One of them suffers selective mutism but otherwise they can both read/write and speak fully. Both receive higher rate care and mobility.

one of them gets halfway across the road and forgets what he’s doing 🙄. The other one can physically use public transport but it absolutely kills him mentally.

I think you need to find a way to explain the costs that doing things entails in terms of the mental energy it takes and how much energy you’ve got left after doing it. Does that make sense?

PIP isn’t affected by whether you can work or not. It’s decided by your daily difficulties.

This site does excellent guides, and help, for an annual fee:

https://www.benefitsandwork.co.uk/

Yes but that isn’t what the OP is saying. She is saying she got sacked for being autistic.

I have autism myself and have always worked because I have to. Even on the days where I’ve come home and gone straight to bed because I’m so burnt out. I’ve never applied for PIP because I genuinely don’t have needs for that money. Of course it would be nice to have extra towards the bills etc but that’s not what it’s meant for!

That’s exactly what it’s meant for… so, you collapse in bed because you’re so burnt out. You could use the money to buy more oven-ready meals instead of having to cook, you could get a cleaner instead of having to clean your house, you could travel by taxi instead of having to get public transport for your commute, etc.

so many high functioning autistics are claiming it it makes it much harder for those with higher support needs
I really don't think that is a fair or helpful statement. PIP is about the specific needs of the individual. My dd has lower support needs than some others but that doesn't mean she has no support needs.
She is able to work, but only part time. Her ability to undertake basic daily routines and activities is severely impacted by her level of anxiety, level of burnout, degree of additional demands, sensory load, complexity of task, level of executive functioning required etc etc. She is frequently unable to undertake tasks like food preparation because she has reached her maximum point of "coping" and is at the point of shut down - or has shut down.
Her support needs may be indirect rather than direct but they are still needs. She may need to do nothing but sleep and decompress on her days off work. And that period of demand-free, recovery time, is one of her support strategies. It is a) costly and b) a necessity to be able to get up and function on another day. It's not the same as needing a physical aid or carer, but it is a support need none the less. During those times, she will need preprepared food, ready meals not cooking. Not because she's lazy or can't chop vegetables, but because her capacity to be independent is impacted by her PDA/autism.
That's just one example of a need that contributes to a "high functioning " autistic adult getting PIP. There will lots of others across the other areas of assessment.

No thanks since i still manage to do all of that with my actual wage rather than rely on tax payers money. No wonder this country is fucked

It’s fucked if people have no sympathy or empathy for disabled people.

I’m terminally ill and I’m not entitled to PIP. I’ve looked into it, even with the help of Macmillan - but I have to wait until my condition worsens. I have to work full time.

This applies to SO many people with health conditions that if what you’re saying is true then it’s no wonder the number of benefit claimants is so high.

My DP has MS and I would never have thought he was bad enough yet to qualify for benefits as still works full time and walks unaided. However it would really help his (and my) quality of life if he could get taxis to and from work and pay for a cleaner as he’s too tired to do anything after work so everything falls to me.

No. It’s fucked because the benefits system allows people to claim for ready meals, cleaner and taxis yet won’t support someone with a terminal illness.

I'm so glad that people are just giving their opinion about the way they think PIP should work, rather than trying to tell @Saramia how it does work, because this thread is a great example of how autism is misunderstood.

@Saramia as a PP said, the form is asking you if you can do the activity. But the law says that to be considered able to do the activity, you must be able to do it safely, reliably, repeatedly, and to an acceptable standard. It must take you no longer than twice the amount of time a person without disability would take.

So, take the cooking descriptor. If you can physically cook the food, but can't plan what to cook because you get overwhelmed, you can't cook it without prompting. If you can physically cook it but wouldn't think about checking if meat is fully cooked, you can't safely cook without supervision. If you would burn the food and then have a melt down because the smoke alarm has gone off, rather than dealing with the burning food, you can't cook safely and need supervision.

What I'm saying is that it's so much more complex than 'can' or 'can't'.

I have 3 children who are ND (one still waiting for assessment, 2 dx with ASD). 2 get enhanced daily living and enhanced mobility for PIP, and one gets DLA. 2 are 'high functioning'.

PIP is not for people who can not work. It is for care needs. My DH got 6 points in both categories, needs help to shower, to get out and about, and still can not get PIP. Its tough.

And this is exactly why the system needs an overhaul. I’m utterly shocked at how easily some people are awarded it

@Budalest My DH can not even walk unaided and has a wheelchair provided free by the NHS. Still turned down even after an appeal. And yes a charity did help him complete the form. He will not apply again as he says there is no point even though people keep saying he must be entitled. Just physical disability seems to be the hardest category to get PIP for.

PIP is not handed out to add luxuries to people's lives.
It pays for the support needed for personal independence.

Please see the above poster who suggested I claim PIP for these things