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?

If that’s true, it’s highly unusual, and also fraudulent.

It's true, I've always said that if she ever has to have a proper face to face assessment she is either going to have to lie through her teeth or find her entitlements will drop massively.

My ds got DLA & gets PIP now, he has ASD & several conditions that are linked to autism (hypotonia, IBS, anxiety & depression) A welfare support worker from my ME group helped me complete his forms & his award increased when he moved from DLA to PIP. If you can find someone like a welfare support worker to help you it is useful. Otherwise go through the assessors report & argue every point you consider is wrong, if for example the report says she can cook a meal, the argument would be she doesn't use the cooker safely, has no concept of timing, she undercooked food like chicken that can lead to food poisoning. Use bullet points & don't worry if you have to present the same argument several times, it is totally normal. Even things like the assessor said that she didn't look like she had any problems, were you there at the assessment? If you were there, you can argue that she masks her problems, you knew she was nervous, was she restless or shaking? Do you have any specialist input, a neurodisability consultant or the SENCO if she is in school or college to back up your arguments.

In my example, I gave a few suggestions as to what someone could do with the money. It was not an exhaustive list. I am trying to communicate to you that Jane is impaired to the point that she cannot go to a cafe or a post office or a supermarket or a shop to buy the basics or go the pharmacy to collect her prescriptions. This is harmful to someone’s wellbeing. I am giving an example of how “not being able to socialise” is more than not being able to eat cake with a friend. Jane can use her personalised independence payment to pay to attend a specialist autism group to help her explore strategies to cope or meet likeminded people. It might pay for a support worker to accompany her so she is able to do the important things in life where social interactions happen.

I've never really thought about it but my DH doesn't claim it. He was diagnosed at 4. His autism was more obvious as a child I think, as he had speech delay as a toddler. I think my husband would feel like he doesn't need to claim as he has a full time job (has done the same one for many years now), owns a house, is married, we have a child. It's there for people who need it.

Pip is about the descriptors not the condition itself. Many many people have been awarded with ASC high functioning or not. Sadly many people get denied and have to appeal some take it to tribunal where the success rate is over 70% which shows that the initial assessment process is flawed.

for someone with ASC they could easily score points under support to socialise, managing money, being able to attend appointments with support, taking care of personal hygiene to a expected level , and so on. Do not give up. You can appeal the refusal as a mandatory reconsideration and then take it higher .

no two people with ASC are the same but as a communication based disability it does impact the way they manage their life compared to someone who isn’t ASC and typically there will be co morbid conditions such as anxiety, depression, and so on.

I'm baffled by the concept that because lots of people have a disability, support for that disability should removed.

That is exactly my experience. I can't be arsed with the whole appeal situation as I know it's gruelling. This is coming from someone who has significant experience of doing these sorts of forms and advocating for families to get the funding they need I

People think there is no money and therefore we cant afford to support them.

They seem to feel that people claiming pip are basically using up all the resources. On cake. Because no one is checking.

The reality is DLA, pip and assistance allowance are about 4% of public spending and 2% of gdp.

To give context, child benefit is 1% of public spending and debt repayments are 5.2% of total public spending.

Yeah, it almost feels like eugenics.

Leave the disabled to fend for themselves out of sight of everyone else. They don’t need the money and just waste it. And anyway the country can’t afford it.

Why not round them up and put them in camps? Then we don’t need to spend any money on them. Apart from a few wooden beds

Why don't we just put a roll mat on the floor?

Or just exterminate them?

Some of the attitudes on this thread are awful. It’s like going back to Victorian times.

A civilised country takes care of its sick, its young and its old.

Why should it be? I doubt that is the only reason she got awarded for PIP. Besides, I would say that the handles are an aid, to helping her use the bath.

The number of times I have seen ( on various disability forums ) people and even welfare rights advisors advising people to ' just write about your worst day ' ( even though this may only be once a year, once a month etc). It's quite shocking. They should bring back face to face assessments for everyone - prior to covid in my area a lot of these were being done in people's homes so why can't they resume that.
I get what you are saying. I know someone with a young person with autism - he goes to Uni, getting amazing grades, has had part time jobs for years as many teenagers do, finds his own way to Uni, constantly socializing, can wash, dress himself. Yet until recently the family had a motorbility car, although I think DWP must have got wise to this as it has now stopped ( the high rate mobility ).

Sounds like you unintentionally minimised how your autism effects you as you did in your op. Language is important in pip assessments your op says you manage with support. But dig deeper and you don't manage really. Pip absolutely do not dig deeper. Wait six months re apply and get advice.

A big problem with autism is that it's often not a static condition - for example, my ability to deal with my social and sensory difficulties varies wildly from day to do. Today, I'm pretty much capable of being indistinguishable from neurotypical. I was dealing with a lot of difficult situations closely with other people last week, though, and I spent the entire weekend exhausted (not burnt out) in a dark room and couldn't even go to the shop next door to get milk.

Not "didn't want to" or "not really feeling it". Physically couldn't.

Explaining that to a PIP assessor, when they arrive on a good day, is extremely difficult (especially when they lie in their report, as they did with my mother's application). Of course, if they arrive on a bad day, it's impossible to explain it to them. Catch-22.

I don't need PIP now, I have a well-paid job that (thankfully) gives me good accommodations, and my OH is effectively my support monkey. If either of those things changes, though, I'm screwed.

The ‘worst day’ advice is wrong and is a hangover from DLA, which had different eligibility criteria.

PIP works on ‘majority of days’, so over 50% of the time.

The assessments, whether f2f or remote, are unfortunately deeply flawed. With assessors who have no understanding of the Claimants’ conditions or the law around PIP entitlement. The assessments are also incredibly stressful, upsetting and degrading for many Claimants. They’re not the solution.

Well now. Why would you write about your best day? You are meant to write about what you struggle with. And how bad it is. So if you can’t make tea 4 nights out of 7 that’s what you say.

As other posters have pointed out, the system does need an overhaul. I would like to know what Labour Plan to do with disability benefits system, if they get into power.

Yes of course but you don't write every answer based on your worst day is the point I'm making. It's fine to describe a worst day but explain how often that happens.

The benefits bill is set to rise hugely by the end of this decade , so whatever party is elected they need to come up with something effective as it will become completely unaffordable. There are talks of scrapping the work capability assessment on UC and replacing with a health element related to PIP but as this thread shows they have to sort PIP out too.

I'm looking at an autism and adhd diagnosis. I struggle so much on a daily basis despite being bright and clever I've not managed to work a lot of hours and my husband picks up the slack.

I also have ME but was rejected for the out of work disability 13 years ago so have been fearful of applying again!

Will reread this form. Also worried that my autistic daughter will need to apply at 16 when she moves from dla and I know the criteria is different.

They won’t do anything. There’s no money to expand it, but they can’t reduce it because that just isn’t labour.

@Babyroobs

The benefits bill is set to rise hugely by the end of this decade , so whatever party is elected they need to come up with something effective as it will become completely unaffordable.

Will it? I understand your knowledge of the system comes from supporting applicants, not being deep in government budgeting