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?

I have MS, cannot walk much unaided, no longer ablebto drive, c
Still cannot get the mobility pwrt granted.

These comments are worrying. If all you adults are struggling then what hope does my 5 year old limited verbal son have to be able to live independently with as little stress as possible.

Many people with autism manage to work and don't require benefits, not sure why it should be a given that you should get PIP.

Yes, but that is their personal reason for deciding to claim, not the reason they have been awarded. They have been awarded based on their care and mobility needs, not because of their working hours

I'm autistic, I get pip but not for my autism.

Pip is for care needs for specific things, so if you don't need help for those things it's right you won't be entitled.

Pip is awarded on a case by case basis, it doesn't have specific conditions it is awarded for.

It is to cover the extra costs of having a disability. What are your extra costs?

I manage by working part time with multiple unpaid breaks during which I sit in a quiet room. I can’t earn enough to support myself financially (I earn about half of a minimum wage salary) so my DH has to support me. So I “manage” by getting someone else to support me and pay the majority of my living costs, which is not really managing is it?

I can’t start counselling and get a letter saying it’s helping me, because I don’t have the money to pay for counselling in the first place.

Also pip isn't for people who need to drop working hours, it's to pay for care needs such as aids and carers.

I think your thinking of universal credit?

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=i-am-autism.org.uk/wp-content/uploads/2021/03/autism-and-work.pdf&ved=2ahUKEwi2ptSsvZKFAxVWXUEAHbILBu4QFnoECBAQBg&usg=AOvVaw1fFrUU2OuvMuRKWA9QmwpH

I'll leave this here. Just 16% of autistic adults are in full time work.

But if you are working full time and driving yourself etc, then you are coping at the moment which is when you were assessed.

If you were bed bound and not able to work, leave your room or do anything independently then the outcome of the assessment would probably have been different

Having read the thread you are discussing the problem is you are misunderstanding what having care needs means. It does not mean the person claiming PIP has to need a paid for carer. And the assessment isn’t based on what support a person is actually receiving, but on what they need.

It’s not designed for the costs of care at all. The clue is in the name - independence.

What PIP is forPersonal Independence Payment (PIP) can help with extra living costs if you have both:

• a long-term physical or mental health condition or disability
• difficulty doing certain everyday tasks or getting around because of your condition

You can get PIP even if you’re working, have savings or are getting most other benefits.

So in the OP’s situation she can use PIP for the costs of running a car because she can’t take public transport, otherwise she couldn’t go out to work etc.

OP, definitely ask for a mandatory reconsideration. When we did DS’s application, we were advised to answer the questions as if it was on a bad day. So when you are on burn out, what can do you do, how it affects you. DS gets the mobility part too as he can get a bus but only to a single destination he knows well and was extensively travel trained to get to. If he had to change buses or get off elsewhere, forget it.

Autism is a disability. And recognised as such. And Pip is for managing the extra cost of disability. It’s certainly not about whether you can manage without it.

You can not write "burnout" as it's not a diagnosis and neither it is a recognised Heath condition

The Royal College of Pyschiatrists have recognised it.

@Inlimboin50s Dh was the claimant for Dd. We had to appoint him. They come and check you out. Then we had a phone assessment, but she wouldn’t talk obviously. That in its own was enough to get her the full award for communication.

I manage by working part time with multiple unpaid breaks during which I sit in a quiet room. I can’t earn enough to support myself financially (I earn about half of a minimum wage salary) so my DH has to support me. So I “manage” by getting someone else to support me and pay the majority of my living costs, which is not really managing is it?

So, have you look at the PIP descriptors and can you say how you meet them?

Ignorance is bliss hey? @MeMyCatsAndMyBooks

PIP appeals are my job, I’ve filled in thousands of these forms and appealed hundreds.

You absolutely can write burnout on the form, as PIP is not diagnosis based, it’s needs based, and burnout is a recognised phenomenon in autistic people. Just like ‘back pain’ is a symptom of a spinal condition and not a diagnosis, and can still be written on the form.

Autistic burnout is different from the colloquial use of ‘burnout’. It’s a neurological phenomenon resulting from prolonged sensory overload. So no, you’re right, you couldn’t claim pip for ‘burnout’ in the absence of a neurological condition, but nobody has said you could. If your ‘burnout’ was incapacitating and lasted longer than 3 months, and was expected to last months longer, you could claim. In which case it would be a mental health issue, chronic fatigue, or similar.

What the op is saying is that people are claiming because working full time leads to autistic burnout. So they have care needs as a result. You can’t separate the two, is what I was trying to say.

Are you sure that's not ESA? That's to do with work unlike PIP, and there is also permitted work on there up to 16 hrs per week?

Many people with autism are just about coping because they were either late diagnosed or spent their whole childhood being told ‘well you can cope with school/learning so there’s no reason why you can’t just get on with adult life’. Without key support with the emotional/social/mental health aspects of autism a lot of adults are suffering from autistic burnout.

It becomes more evident as the ‘high functioning’ autistic person gets older, as abilities to ‘mask’ symptoms and abilities to ‘fit in’ becomes more difficult to maintain. Often (not always) it’s easier for someone with ASD to fully manage one area of life (such as work) but other areas completely fall apart putting all their effort into maintaining that one area. So (and can be some, all or more than this) their homes may be cluttered/unclean, their personal hygiene may be lacking, their bills may be not getting paid - not because they ‘can’t be bothered’ but because all of their energy is going into simply keeping up the facade of being a ‘normal adult’. To be a functioning adult, you have to be able to function in all areas, many people don’t realise that those who have high functioning’ autism are only functioning to what they want you to see.

Well then I don’t understand. You need a paid for carer, and PIP allows you to pay for that carer. The assessment identifies what care you need and gives you the money to pay for it. If you’re not paying for a carer then what do you need PIP for?

I get pip for autism, but I know some people roughly the same as me that had to do the appeal process it sometimes seems random, I think there’s charities that you can get help from that help with the filling in of the forms

Print off the descriptors and see how you would assess yourself against them and what points you would be awarded.

Then provide the evidence to demonstrate how you meet the descriptors.

Some of us need equipment. Some of us don't drive because of our disabilities and need to use public transport. And then there's things like only being able to have certain foods, pre chopped veg, etc

I've never tried, when I've looked at the assessment criteria it seems more mobility and care needs based. Whereas I feel my issues are psychological

I’ve posted this before, but if anyone wants to read about how unsupported or undiagnosed autism can affect those who seem ‘fine’ most of their lives then I always recommend reading Anne Hegerty’s story

https://www.bbc.co.uk/news/disability-63089051.amp

@CanNeverThinkOfAName how am I ignorant?