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?

Posted too soon...

Disabilities are caused by conditions but conditions do not always mean disability

So I'm wondering whether it would actually be any more expensive to just award it automatically to all disabled people and save the application process which is both expensive and difficult.

I have several conditions that technically count as disabilities but are completely controlled by medication. I don’t think someone in that situation should automatically get it - I think it would be far too expensive to give it to everyone on permanent medication.

Oh, I'm really genuinely sorry about that Tiger There should of course be access to help for situations like yours too.

coloredball - of course. But disabilities also vary. Which is why applying for PIP seems to be so stressful/uncertain/random/wrong etc. That's why I'm saying maybe it should be automatic with a disability (or condition, if you prefer that word). The fact that people are differently affected by almost everything doesn't necessarily mean it wouldn't be cheaper, easier and just generally more compassionate to grant it to all affected people.

Cross post coloredball - sorry, that actually makes more sense. If a condition is not disabling at all then I suppose that does make it seem pointless to have an automatic award. But I wonder how common that is.

That's why I'm saying maybe it should be automatic with a disability (or condition, if you prefer that word).

It's nothing to do with preferring a word. They are 2 very different things and one does not mean the other.

Ok, fair enough. I still don't really understand but you've tried your best to explain so I don't think I'm going to get it. Thanks, anyway.

Thing is, autism is still classified as a disability (not a condition) - whether a person feels it is such or not is a different matter. The reason people get a diagnosis is because it is impacting their lives - ie regardless of how they chose to frame ASD after that diagnosis, it had a significant enough impact for them to seek it. To what extent it impacts their daily lives, and the manner in which this has a financial implication, is subjective though.

So PIP has to be a qualitative assessment that cannot rely on diagnosis of autism (or something else) alone, because it’t not a ‘disability’ award, but an award made to support people whose personal independence is adversely impacted by their autism.

coloredball - of course. But disabilities also vary. Which is why applying for PIP seems to be so stressful/uncertain/random/wrong etc. That's why I'm saying maybe it should be automatic with a disability (or condition, if you prefer that word).

I don't think you get it. Conditions affect people differently. Someone with autism may be high functioning, no care needs and a job whilst someone else with the same diagnosis may be non verbal, with severe learning disabilities and needing round the clock care. Why would the first person get the same financial support as the 2nd person when one has no care needs and the other needs 24/7 care?

doppelganger - so that those that fall in the middle of those two definitions (which must be a huge percentage of those with an autism diagnosis) don't have to go through stress, humiliation and potential failure to get what they need.

But I thought there wouldn't be that many people who wouldn't need the money for any reason and it seems that isn't the case so it wasn't a good solution suggestion.

It's about the impact of your condition on your life. Someone could say 'I work'. It may be true. It may also be true that they can only work because the place they work at is in walking distance, they have been given fixed shifts when everyone else rotates, they are given set duties and don't have to man the till, they are allowed extra breaks and can leave their work at any point that they get overwhelmed, that they are allowed to phone in sick on days when they can't manage without the normal absence procedures applying, etc., That isn't the same quality of 'work' as a typical person. So they can state that on their PIP form, and it will give the assessor a better picture of their needs.

It is not a "care need", but it is one of the criteria on which PIP entitlement is assessed (descriptor 9, "engaging with other people").

If someone "doesn't want to" engage with other people because they find it overwhelmingly distressing, the points awarded for that alone would be enough to get them 8 points, which would give them the standard amount for daily living. If they can do it, but need support in order to do it, they would get 4 points.

doppelganger - so that those that fall in the middle of those two definitions (which must be a huge percentage of those with an autism diagnosis) don't have to go through stress, humiliation and potential failure to get what they need.

but everyone has to apply for Pip - even those severely affected. And yes, I think there should be an assessment. You can always appeal to tribunal (as I had to for my DC). but one wrong doesn't make another wrong right.

That’s different, and you’re right. That comes under the reliability criteria (safety), and the ‘constant, unpredictable risk’ - so of falls, fits etc. Doesn’t matter in these cases how often it happens, the risk is the majority of the time. Autistic meltdown can also come under this criteria. Case law supports this.

This doesn’t apply if you get warning of a fit, or seizures are controlled by medication (no fits in over six months). In this case, epilepsy won’t score points for pip.

Paper assessments should be enough?

I don't have a problem as such being assessed but I felt very judged when I had mine. She was clueless.

Myself and 2 of my children have diagnosis of ASD or ADHD or both, I've never tried to claim for any of us, although we would very much benefit. Mostly that we would be able to skip queues at busy venues but the requirement is always proof of DLA/PIP. But I just can't face the forms.

I have heart disease, type 2 diabetes, hypothyroidism and arthritis, I was refused PIP because I can walk 200 yards. It's based on your daily living needs snd in my opinion is designed to screen you out rather than to give you help.

There has to be a better way to ensure that people who are eligible for PIP, are able to claim without the rigmarole of filling in a lengthy form, and then having the stress of trying to explain how they are affected by day to day living.

What better way? I’m not being obtuse but surely explaining your limitations has to be part of the assessment?

But they would likely fund for the average, leaving those severely affected having a massive short fall. It wouldn't be fair, or affordable, for example to give everyone with autism funding for 24/7 care which some would need, most do not. And it's not just autism, lots of conditions have a really wide range of needs and therefore costs.

I'm sorry, I haven't read the whole thread, but to get PIP for those reasons you need to tell them you can't shop for example, or you need counselling. It's not a benefit for not being able to work, it's to cover costs that you have due to your disability, so you need to make sure they know what things you need financial help with.

The questions are designed like that deliberately.

I'll give you a great example.

I can walk 200m. There is nothing affecting my limbs that prevent me from doing so. However it would cause me severe breathlessness, palpitations, chest pain, and I would be at great risk of fainting.

So on the form, I had to put "no" and explain that whilst my legs work, I cannot walk 200m safely due to the above reasons, which is why I use a wheelchair.

It's not as cut and dried as that, OP. PIP is awarded because someone meets a certain threshold of need, as measured by their ability to carry out certain activities without assistance or support, and to carry them out safely, repeatedly etc.

If someone can do something, eg engage with other people, but it makes them so burnt out that they can't do it again for several days, then they wouldn't be able to do it repeatedly, so they would score points for that activity.

Not all the relevant activities are things where paid care would be required to enable them to undertake that activity, so to refer to it as being for "care costs" is a bit misleading. If that person's difficulties in engaging with other people meant that they needed to shop online, some of the money would cover the delivery charges that they wouldn't have to pay if they could shop in person, or to get a taxi to avoid having to engage with others on public transport.

Once the money is awarded, it's up to the individual how they choose to spend it. They can use it for whatever makes their life easier.

I think this would be impossible to regulate.

As others have said, a diagnosis tells us little about functioning. And it would also exclude those who haven’t been able to access a formal diagnosis. At the moment a diagnosis isn’t necessary to claim, although the diagnostic report can be helpful in evidencing needs. Someone without a formal diagnosis can provide other evidence.

It's not based on an average, either. It's based on if you can carry out the activity "the majority of the time".

At every PIP tribunal I've been to, they ask how many days in a week the appellant needs help/prompting etc for each of the activities they need support with.