To think most autistic people can’t claim PIP?

[Bluefell]

Specifically adults with high functioning autism, level 1 autism, Asperger’s, whatever you want to call it. Maybe you have qualifications, maybe you are married or have kids, maybe you even have a job or drive a car. Do you get PIP?

I have autism and I’m being told I’m not eligible for PIP because I’m “too functional” and I “don’t have any care needs”. I manage on my own (with the help of various adjustments and the support of my DH) but I’ve never worked full time because I find it too overwhelming.

I’m being told that other autistic people receive PIP to enable them to work part-time because they find that work burns them out. So why don’t I receive PIP for the same reason? I’m also being told that people get PIP to pay for counselling to help them cope with autism, or to pay for food deliveries (because the supermarket overwhelms them), or to pay for therapy which helps them to integrate socially and mask better. I would equally benefit from those things but I can’t get PIP.

AIBU to think that most high functioning autistic people like me aren’t able to get PIP? Or is everyone else except me getting it?

IMHO it would make a lot more sense to remove PIP and have centrally funded support services.

So in the other scenario above there would a community cafe and cookery class where Jane could socialise, get help with independent living skills and eat a healthy meal.

The unfairness of how PIP (isn't) allocated alongside cuts to services that actually help people makes me mad.

PIP is obviously loads cheaper for the government than properly funding care and support...if nothing else because so few people can get through the claiming process. Which in turn creates even more social division, potential stigma for the have and have nots and is just wrong 😡

Maybe Jane feels more comfortable when she is eating cake because it's a purposeful activity, so she can manage being in the cafe more easily, and can concentrate on her cake so she doesn't have to talk to people.

DD2 comes to a dog training class with me. She copes by wearing headphones, breaking up liver cake, and focusing on her dog. I do any bits where we have to stand up and follow instructions.

So in this scenario there would a community cafe and cookery class where Jane could socialise, get help with independent living skills and eat a healthy meal.

…which may not be accessible to her. Absolutely no way I could go to anything like that - any support has to be 1-1. Which is why I like the concept of PIP - you can use it for what you need, not what someone else finds for you to use it on.

Can’t believe that high functioning people with autism qualify for PIP. But probably explains why there’s been such an increase in people wanting assessments….

Still no such thing as ‘high functioning’ autism. Maybe actually research what autism is rather than research the Daily Mail for ‘who’s taking all the benefits now’ rage.

Edit for typo.

Because autism is a disability, and people with low support needs still struggle in some areas where they would qualify for PIP. If they did not struggle in some areas, then they would not have been diagnosed to begin with.

Yeah, that will be it.

To expect state funded 121 support without any check or balance that it is appropriately spent perfectly encapsulates the entitled and consumerist attitude so many people have towards the public sector and welfare state.

I’d be happy for the state to check what I spend my PIP on. Doesn’t even cover half my extra costs, but it helps.

Would you prefer people like me to have no support?

Sorry if I've been saying it wrong for years but I thought "high functioning autism" was the correct term for what used to be called Aspergers syndrome. Although I don't like the term "high functioning" as I think it's misleading. Ds1 continues to use the term Aspergers syndrome as that is what he was diagnosed with.

@Livelovebehappy the term high functioning autism is misleading. It means autism without learning disabilities. To be diagnosed with autism you have to have quite severe needs, you don't get a diagnosis for being quirky or not liking to socialise. My son is considered high functioning. He is working at greater depth in maths, although he is just as likely to eat the paper as he is to answer the maths questions.

I think the state is probably unable to audit disabled peoples spending without it being a very expensive to administer system. It would also be very challenging for some disabled people to pay for things and then claim it back if they dont have money to buy the things in the first place.

I also think the government would probably be concerned about getting much bigger bills in from quite a few people.

The terms keep changing, so it is confusing. My DP was diagnosed with Aspergers, so that is what he uses. He is not into the whole autistic "community" thing, so has no idea what the current acceptable terminology is.

Asperger’s became ‘high functioning’ autism when they did away with the former term and started introducing ‘levels’ of ASD (so 1 would be old school Asperger’s). You are right in your second paragraph - there is autism with and without a learning disability. Those with LDs would more typically need higher care for lifelong periods of compared to those with ASD who have managed academically. Unfortunately this is where those deemed ‘high functioning’ have been let down by the system - academics are not for life but autism (a social communication disorder) is. And like any disability, it can fluctuate between better and more difficult days, someone thought of as ‘high functioning’ could very well not be managing well at all. Autism is autism, those who have ASD may present higher/lower needs in different areas/across the spectrum but it’s still the same disability.

I'm just not a PIP fan.

It was a collation government initiative introduced to help to justify and cover up the dismantling of social and charity sector supports, with a hard to apply for system that creates confusion about eligibility and further distracts from awareness of what is actually happening to the state.

In a few decades we are unlikely to have a workforce with the skill set to even provide the 121 support that PIP pays for for example because education now excludes so many young people.

It's all just a 💩 show and I don't feel the support needs of individuals actually come into it.

Pip assessments are not fit for purpose.

I have severe OCD and trauma related mental health problems, as well as specific learning difficulties.

I found my phone assessment so challenging that it caused a huge relapse and I was off work for 3 months.

They rejected all of my answers, just seemingly didn't understand or write them down. The assessor didn't actually seem to know what OCD was, either.

One of the reasons they cited for not awarding me PIP was that I "didn't sound anxious on the phone".

Now I know that technically I would be entitled, for various reasons, as I did research it all.

Basically, I'm not at all confident that because someone is entitled, they would be awarded.

I 100% feel I was set up to fail, I'm sure I'm not alone in that. Sorry OP.

Who gets PIP and who does not seems to be more down to luck of the draw than anything.

The whole system needs an overhaul. The money should actually be used for what it is intended for.

Yep, and how you word things on the form, and you assesses you on the day.

It all boils down to the fact life is hard and many of us have physical or mental health issues, and all we can do is cobble it together and keep going because if we all dropped out of the workforce or claimed additional benefits there wouldn’t be any money to pay those benefits to start with.

What ignorant nonsense. One of the main purposes of PIP is that it enables many disabled people to continue to work when otherwise they would not be able to do so.

I pay far more in tax than I receive in PIP payments, yet without that additional money it would not be possible for me to continue to work. If my PIP was removed there would be less tax revenue overall. All the tax I pay would no longer be paid AND the taxpayer would then have to fund all of my living costs. Giving me a small rebate on my tax in the form of PIP saves other taxpayers thousands of pounds per month.

Your comments are ignorant and economically illiterate.

Ok, so I have a friend who claims PIP... one of the descriptors is helping to have a bath. So she gets the money, uses it it have bars put on the wall so she can get in and out the bath safely. That is done, so no ongoing costs. Should her PIP be stopped?

My partners daughter gets the higher rate of Pip, hasn't had a face to face assessment, can cook, has no care needs, will quite happily take public transport if she doesn't want to drive. She's 20 and has been getting it for two years, she lives at home but is applying for jobs reluctantly as the Pip goes on takeaways and tattoos

PIP is hard to get, so there is probably things about your partner's daughter that you have no idea about (and rightly so). She can spend her PIP on tattoos if she wants. It is awarded based on need, not costs.

I can assure you that she won’t have been awarded PIP without an assessment without providing some overwhelming evidence to support her claim. Hope that reassures you.

Her takeaways may well be because she is unable to cook, for whatever reason. Just because she sometimes can, doesn’t mean she always can.

You couldn't be further from the truth there, I was with her when a social worker advised her to exaggerate her symptoms on the forms. She had had a diagnosis for a number of years, performed well at school, dropped out of college and sees the PIP as the government paying her not to work. Her boyfriend wants to buy a place but they will need extra income hence her reluctantly job hunting. And yes I know she can spend it on what she wants

She had no assessment, she was genuinely astounded and amazed. She cooks her lunch every day and dinner for her boyfriend and her 4 nights a week. The only times she doesn't cook is not because she can't it's because they have takeaways.

I have been part of her life throughout the whole process of her applying and being awarded PIP, I know what she can and can't do, she is a very good masker, very intelligent, quite manipulative and an expert on Google. She currently does the accounts part time for her partners family. Fair play to her, it's obvious not everyone gets it quite so easily but she did.