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?

It doesn’t need to be a care need (although I disagree, engaging with others can be a care need and is part of Care Act assessments). PIP includes the activity under the daily living component, and working does not preclude scoring points under the engaging with others activity.

I'm not sure why you are asking on here when the experts have told you no TBH.

Part of getting PIP is knowing how best to words your answers. It's important to be really specific - I claim pip due to arthritis so a bit different, but these are some of the phrases I used, just to give an idea of what they are looking for, it needs to be really concrete, rather than generalised
" on average I can't get out of bed 4 days a week without my husband helping me due to pain"
"I need help opening my medication packets every morning due to joint stiffness"
"On a bad day I can walk for 3 mins before my pain stops me so i need my husbandto drive me to work etc, my bad days are roughly 2-3 a week. On a good day I can walk 10mins, but slower than average"

It's a brutal process, I found the interview really traumatic, the personal details they wanted to know down to 'does your husband wipe your bottom' to the point where I am really considering whether to re apply when my 2 years expires later this year. I know it needs to be strict, but I think they should rely more on professional reports than a phone interview

Experts? You mean DWP assessors?

She can interact, she works and has a partner! She wouldnt dream of making a claim for something like this.

She simply doesnt want to. I would be amazed that if answered honestly someone like my sister would get points for the level of social interaction she has.

On the other hand (and its not PIP) trying to claim for my mum, who is significantly disabled from her mental health, my dad cares for her, she cant organise herself to get shopping, coujldnt go to the shops on her own, wont remember to eat or arrange that, manage her appointments and take meds etc, didnt meet the criteria.

Its a complete joke.

The government doesn't want to know what I need the money for, specifically, so neither should you.
I don’t give a crap what you spend money on. It’s the principle. Take me as an example if you prefer. I need alarms to be able to take medication and attend appointments. That doesn’t cost me anything. So why would they give me money for something that’s not costing me money? I don’t get washed unless DH tells me to - so he does, and that doesn’t cost anything - so why would they give me money for that? I can’t socialise, but that doesn’t cost me any money, so why would they give me money for that?

You said she is “unable to socialise”. That can score points under engaging with others. Whether she chooses to apply or not is a completely different matter.

It's funny that you're providing an insulting offensive statement to back your point when you've just described certain factors of the autistic spectrum to a tee.

Burnout and autistic burnout are completely different things FYI.

Because other people with autism are saying they’re getting PIP for the same as I’d use it for, and tbh I could use that support. I don’t see why they get it and I don’t. I was wondering if most autistic people are getting it and I’m the odd one out, or if most people aren’t getting it.

It depends. If she genuinely doesn't want to interact with others, and can manage all her day to day affairs without support, without interacting with others, fine.

However, if she doesn't 'want' to interact with others, and that leads to difficulties in her day to day affairs, then that limitation will score points.

If she ran out of milk and wouldn't go to the shop to get more because she would have to interact with people, that is very different to someone who just chooses not to speak to people unless they have to.

YANBU it's very very difficult to get it. Most do manage to get it on appeal though.

@Bluefell

I don’t give a crap what you spend money on. It’s the principle. Take me as an example if you prefer. I need alarms to be able to take medication and attend appointments. That doesn’t cost me anything. So why would they give me money for something that’s not costing me money? I don’t get washed unless DH tells me to - so he does, and that doesn’t cost anything - so why would they give me money for that? I can’t socialise, but that doesn’t cost me any money, so why would they give me money for that?

Why are you questioning it at all?

You have been turned down and are bitterly questioning the use of PIP - it's coming across as really shitty.

They aren't. They don't get PIP because it would be useful for x, y, z. They get PIP because they have demonstrated difficulty with a, b, c.

Because socialising is a basic human interaction. And if you can’t then you must have limitations in this area.

But surely you understand we can’t afford to simply give money to anyone who feels they need it? You seem quite entitled tbh. And this thread seems to be an attempt to work out how others got their PIP.

Did you not appeal? You can object to a face to face interview at 16 I think.

My DC has ASD and got DLA as a child for a little while. I actually stopped claiming it as I felt their needs had lessened. They are an adult now and don’t claim DLA.

Also, I helped someone claim PIP, not ASD related. The process was awful and the assessor made them cry. They were awarded a very low amount but were so traumatised by the process that they didn’t want to appeal. The bar is set very high ime, for example they are deaf but the assessor said that they had no needs to do with hearing even though I needed to be there to explain what was being said on the phone 🙄.

My DS has also never taken medication. Gets low rate DLA [ lifetime award] because he can't prepare a meal unassisted and has panics at unexpected social demands. Also can't drive and will never be able to.

Autistic burnout and NT burnout are completely different things.

My ASD Dd has been in autistic burnout for a year. Shes lost the ability to process information, and avoids reading when it used to be her favourite hobby.

I get full pip for mobility and care, I have serious mental health condition. To get pip I had to send evidence from my consultant, Cpn, hospital stay reports. I also had a telephone assessment. It was a long process and very hard for me, it goes on care needs not condition. I don't pay for a carer, but the money is helpful for things like taxis as I can't drive due to my illness, buying ready prepared ingredients as I struggle to cook etc.

PIP is almost impossible to get. I have medication resistant epilepsy where I have on average 3 seizures a day (not tonic clonics which are the classic epilepsy seizures people associate with the condition) but focal aware and complex partials.

Up until the point of October 2022 I was a highly successful single parent, on a higher rate tax bracket. Then I started having seizures out of the blue, seemingly no cause despite all the tests I’ve had.

It took 18 months, lawyers and endless, endless stress to get PIP. I’m higher rate both daily living and mobility, but it obviously doesn’t come close to what I was earning before.

I do believe PIP should only be for people that REALLY need it. I can’t work, because I can have a seizure at any second with little to no warning, I can’t even use public transport in case I have one and urinate when I’m unconscious. It’s horrific, and ruined my life.

If you’re capable of working (I wish I was! I miss my old life) then you should. I know plenty of people with autism that have absolutely no need for PIP.

You don't get PIP to pay for carers although you can spend it on that. You get it for care needs. This person has those care needs. It doesn't matter if they are being met by someone, the needs still exist.

If you’ve met one autistic person you’ve met one autistic person……

This is going to sound like I’m being a real goady fucker, but this is a genuine question.

In the past autism wasn’t as recognised or diagnosed as much as it is now. However that didn’t mean that autistic people didn’t exist. So what did they do in the past? Yes there were people stuck in care homes or being cared for in the community (my grandparents took in a young man who today would have been diagnosed with autism and cared for him until he died). But what about the people who are able to live independently, get married, have a job? They wouldn’t have had any support or understanding. How did they cope?

Ffs that’s obviously not what I meant. Sorry I had a seizure earlier and perhaps didn’t explain it properly.