To think most autistic people can’t claim PIP?

I disagree PIP or DLA should remain.
The questions should be easier to understand and the process more transparent. It takes a great deal of emotional effort to fill in the form.I have done it for my daughter and I found it exhausting and depressing acknowledging her difficulties and that she will never be independent. I sometimes feel that I should apply as I have severe RA.
I just can't face it!

I suppose like all things it is subjective and there will be a cut off in eligibility.

PIP or DLA is given for a huge variety of conditions and disabilities. PIP is there to help enhance the individual disabled persons life.
It could be to help buy a better wheelchair, get an adapted car, to buy chopped veggies, get a cleaner. Or even just to turn the heating up a bit or get a taxi.It could be used to help you access work or get tuition or a PA or to access clubs or socialise or just have a bit of fun.
With PIP you often eligible disability bus pass and buy a disabled rail pass.

It is sad that support services are being badly cut. Your community cafe idea is good idea an people could use their PIP to help access it.

The idea is good but not at the expense of everyone giving up their PIP.

PIP is really there to give a little bit of financial support to help with your daily life and should remain with the disabled individual on how to prioritise how they use it.

Sorry, I was not very clear in my post, but thank you for the replies. I was thinking maybe that they would look at removing the need for people with lifelong disabilities from needing to go through the stress of short term awards, that type of thing. Especially those who are just not going to ever improve etc. But I have never heard Labour mention anything along the lines of sorting out the PIP system. The amount of money being spent on assessing people, who, quite frankly will not see their condition improving, must be immense.

That's a whole separate issue which is more specific to girls with ASD and the lack of knowledge in HCP and teachers still. Masking generally means that unless the girl has learning difficulties they don't get support until their MH deteriorates to a point where they can't mask. Boys generally get support because even mild struggles will usually present disruptively.
Hopefully over time schools will become more aware of watching for quiet girls.

The DLA side of things is an issue where I think more focus needs to be put on significantly disabled individuals though. There's lots of children who qualify for small amounts for just being harder work to parent with ASD or ADHD etc, but they're not actually impacting their parents ability to earn an income. Imo that money would be better placed increasing the financial support for parents where their children need 24/7 supervision and care and their ability to work or use childcare is very limited.

@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

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

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.

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.

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.

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.

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.

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.

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.

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.

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 ).

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.

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

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

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.

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

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

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'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.

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.