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?

But it’s self reported and a lot of it based on MH issues rather than something with concrete pathological evidence. If I say I can’t make a meal because of MH issues, how can they disprove this?

This is me to a tee.

People refuse to believe I am autistic because I show none of the signs they expect that would suggest I am. I can force myself to make and hold eye contact, I've learned social etiquette, I've learned to pretend to be interested in chit-chat even though it bores me rigid. I mask constantly when I am anywhere other than my own home. What they don't see is how completely dysfunctional I am inside my own home, and how unconventional my living space is.

I am true to the book in that I am finding it more and more difficult, and more and more tiring to keep up the facade the older I am getting, and I am seriously contemplating retiring completely from work. I can't really afford to financially, but I'm familiar enough now with my own health and wellbeing to know that living in near-poverty will be less problematic for me than trying to cope with declining mental health.

I don't claim PIP because I suspect I wouldn't be granted it, but also because I don't want to have to feel obliged to explain why I receive PIP when I also have a job, dress reasonably well, and I'm happy and able to maintain a social life. I can see from this thread alone that there are still plenty of people who struggle with the whole concept of hidden disability.

@GoodnightAdeline

But it’s self reported and a lot of it based on MH issues rather than something with concrete pathological evidence. If I say I can’t make a meal because of MH issues, how can they disprove this?

You need to evidence the MH issues and the claims you make need to be consistent with the conditions you have

Most people who are claiming this would have some sort of evidence. Also, the mental health issues that prevent the cooking of a meal would be evidenced in answers given to other activities.

Generally speaking, someone who has such extensive mental health difficulties that it prevents them cooking a simple meal, would have some sort of professional involvement, even at GP level.

But disability can deteriorate. And you don’t have to explain to anyone.

My brother gets it. He needs day to day help with most tasks though. He is 37 and cannot read or write, needs daily reminding to shower, brush teeth etc. He can cook very basic things like toast or cereal but nothing that would include the oven or hob. He will never be able to drive or have a job. He is a permanent danger to himself. His relationships have struggled as any friends he had got totally fed of him and he will likely never have a romantic relationship. He would never get a haircut unless we took him, he wouldn’t think to buy food unless we prompt him. Conversations are a real struggle and he is only really interested if it involves Batman or iron man. His autism has affected every area of his life. He lives with us as he cannot live independently. His meltdown can also be very violent. I’ve heard people describe autism as a superpower and I wish I could see it that way, however it has taken his life away

Did you then go to appeal? Mandatory reconsideration has a 20% success rate. If you then go to appeal the rate is about 60-70%. I understand it is very stressful though and some people can’t face doing it.

Have you looked at the descriptors?

Fwiw, DD gets enhanced for both but she is low functioning and needs 24/7 support and cannot be left alone at all.

Having done the form recently, I wouldn't expect a lot of those with HF autism to qualify.

OP I have a different condition that means I can only work part time too, and I get that it's really tough and that in a way you fall through a gap of support not being available.

But PIP isn't there as a way to top up income, it's for people who meet certain care criteria as others have said. For me, I cannot work full time but am ineligible to claim PIP even though I can only work part time and my condition has a massive affect on my life.

You're misunderstanding the examples you gave above - there's a difference between being awarded PIP for something versus using it for something. Those examples you've provided show that people are using their PIP to be able to work part time (which is a perfectly reasonable way to use their PIP award), not that they were awarded PIP because of only being able to work part time. It's a subtle but important difference.

I think it's skewed against neuro diversity as if the physical elements ie food prep, dressing, toileting are all fine it's reliant on scoring very highly on the social/emotional areas.

I am similar to yourself and work 10 hours per week. I did not qualify for pip. I got 8 but think minimum is 12. I felt like the assessor manipulated it for example she asked my best day but not my worst.

I wish I had challenged it but tbh I found the whole thing so stressful I didn't have the mental energy to challenge it

8 points in either care or mobility section would give a standard award. I'm gusting your points were a combination?

Thanks! I would have posted a link to the points and descriptors if you hadn't beaten me to it.

For each activity, you need to explain precisely why you need assistance/supervision/prompting etc and how a specific heath conditions gives rise to that need. And to be able to do something in PIP regs means you have to be able to do it safely, repeatedly, to an acceptable standard and in a reasonable amount of time.

If this was more widely known, I think a lot more PIP applications would succeed.

Even when you know it, applications that should succeed often don't. I work in welfare rights, and our team has around a 60% success rate at the initial application. However, we have a 98% success rate at appeals, so a lot of the 40% of our applications are wrongly refused.

I've had success with applications for people with autism, but I also know autistic people who I don't think would meet the threshold for PIP. It's not cut and dried.

There will always be a group of people who fall into the 'disabled but not disabled enough' group. It's hard for them, because they may struggle with activities but not enough, or not consistently enough, to qualify.

One of my daughters is unlikely to ever be able to live independently or work independently, or even go out independently. She obviously gets full rate PIP and always should do.

One of my daughters is currently in receipt of full rate PIP because her needs are extensive. In theory, it's possible that with enough support and therapy, she may become more independent and her care needs may reduce. But it will take a long time.

For my children, their ASD impacts every activity of living. It's pervasive.

Yes but again it’s all self reporting. If I went to the GP and said I was too depressed to shower or cook for myself, how can they prove or disprove this? None of it is evidence per se, just a trail of reporting.

It’s definitely not self reported. The DWP don’t take someone’s word for it. It would need to be supported by evidence.

OP you need to access an advocacy service. The DWP will turn you down if they at all possibly can. I'm autistic but i'm also a support worker for autistic adults, and I've supported a few through PIP claims. One person we had to appeal it twice but now he's got lifetime PIP.

We are entitled to it, if our autism affects us to the point that it costs us money, makes it difficult or impossible to engage in work, live independently, etc. Virtually impossible without an advocacy service. My claim was turned down on the basis of things I'd never even said. It's criminal how disability benefits claimants are treated and fobbed off.

A professional would make an assessment as to whether the level of restriction claimed is consistent with their experience and the overall presentation. If someone’s so depressed they can’t cook a simple meal, they are going to be struggling in other areas too.

Yep same. The process is so complex and demanding it pretty much forces us out anyway.

The people I know who claim pip also claim alot of other benefits and laugh about how they just say some shit and get given money. Meanwhile I'm barely managing to keep up with life but I haven't successfully killed myself yet so I must be fine 🙃

Well, for example, my children had EHCPs, Speech and Language Therapy reports, Occupational Therapy reports, medical reports, diagnostic reports, etc., etc. Their claims were dealt with 'on paper' because they had extensive evidence.

The DWP don't just accept self reporting and it's not fair or accurate to say that they do.

DSD gets PIP, a 10 year award. She can only work part time. She needs prompting to shower, ear, get dresses, brush her hair, brush her teeth. She can't cook or do something simple as make a cup of tea. She can't make an unfamiliar journey alone, can't plan anything, has no concept of time as she simple cannot tell the time. She can wash herself, but left to her own devices it will happen once a month (being optimistic here), she can dress herself but has no idea if what she is wearing is appropriate. Has very little social skills, difficulty in getting her words out to get her point across etc. It's tough and she will never be able to live an independent life.

No that's not the case at all. PIP is awarded on a points based system according to care & mobility needs. Everyone is scored individually & there's no automatic award just for having a diagnosis or label & it's independent of work.
If you are too sick or disabled to work then it's UC you need to claim.

You can Google the points system to see how you are likely to be scored.

@colouredball yes it was across two. Both around communication/social/emotional

@Iscrewedupbadly would it be too intrusive to ask what she does? DD1 is in a similar boat, although we think her impulsivity, no danger awareness, and mental health difficulties will make work unlikely. But there might be something we haven't thought of!

That's not what I meant. If you scored 8 points on the care section, you should have been awarded standard rate PIP.

@Lougle she works in an after school club, it's perfect for her.
We're lucky that the women she works with "get her" and are very understanding and helpful with her limitations x