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?

No, it isn’t ridiculous and plenty of people do get pip due to autistic burnout being the result of trying to manage all the required tasks. Someone in autistic burnout won’t be able to manage the self care etc, which is how it fits within the task descriptors.

OP, I think you are mistaking what people are saying. I think people are possibly saying that the reason they decided to claim was to allow them to drop their hours? Rather than saying inability to work full time is the reason they were awarded?

My son of 16 was too scared to pick up the phone for his PIP assessment so his dla ended.
I should have put my name down for appointee but because he can cope in some situations I felt I was being fake.
Chatting to the school senco who the PIp people called in regards to my son,she really tried to help by stating all the support my son needs,but what they really wanted to know was what medication he is on. And he isnt and never has been.

I'm sorry this is your experience. Have you considered appealing?

i presume you’ve looked at the PIP descriptors and points https://www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf

when you go through it yourself how many points do you think you should get? Do you have evidence to back up that you meet the criteria over half the time? If you think you score at least 8 points in the daily living and/or moving about sections then take it to tribunal. Many many people win at tribunal.

You sound like you should get it though,

Then you have care needs? And mobility ones? This is what you need to focus on in your application.

Being rejected doesn’t mean you aren’t eligible. It means the law hasn’t been applied properly

I get pip for autism
I work full time and drive but have never had a relationship or kids

also worth noting I can only drive to work. Cannot drive anywhere new. I get the mobility part as I simply cannot take my own self anywhere new. Even if a familiar environment changes the way it looks I got no idea where I am

I am definitely no clever autism or Asperger’s though. I really struggle a lot of the time as I no really understand things and if I did no have my friends to helps me I would no be able to survive”independently” as possible

I have been I. The same job for 16 years so at least I safe at no getting sacked or anything

I think you’re misunderstanding them, that might be what they use their PIP for, but that is not the basis on which they argued their case for PIP.

This poster is correct, PIP is awarded based on the points system. The reality is that for most people who are capable of driving to work, live independently, hold down a full time job etc are going to find it very very difficult to then argue to a PIP assessor that they suddenly should be eligible and so lots who are high functioning do get declined.

You should appeal this. If he couldn’t deal with the process, he should have had an appointee. But they could also do a paper based assessment.

if it was less than 13 months ago, you can still appeal it.

Specifically adults with high functioning autism, level 1 autism, Asperger’s, whatever you want to call it.

Just autism. All these terms are obsolete.

As for claiming PIP, my sons (who are both currently on the highest care rate each) will probably have very different experiences when the time comes. My eldest has ASD with the capacity for learning, however whether he will be able to reach the same level of self care expectation by 16 is a different matter. My other son has global delays and expected to be diagnosed with learning disabilities in the next couple of years. His care and support needs will likely never lessen and his capabilities to lead a typical adult life will certainly be evident.

They both have the same disability none the less and I feel for those who have ASD without GDD/LD as their autism is somehow seen as ‘lesser’.

There are posters on this forum saying that’s exactly why they receive PIP. And people who work in PIP assessment posting on this forum saying that’s a valid reason to receive PIP

If people are saying that they get PIP because of burnout then they are misrepresenting the situation to you. The burnout may cause a person symptoms/difficulties that would help them to score points, but it's the symptoms/difficulties and not 'burnout' that score the points.

@WaitingForMojo

No, they get pip for the care needs relating to their ASD. Burnout is a small part of ASD and is often temporary/fluctuating but it OSS I've a. symptom of ASD. You would have a very very difficult time claiming for burnout Alone as it's not a regular condition, it fluctuates. That automatically mashed it harder to claim for as you have to break everything down into tiny stages and go by "average " and "best days vs worst days". I know this as I myself have several fluctuating conditions and the forms are an epic slog and even with help it's very difficult to get.

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

Being autistic doesn't automatically mean you get PIP, and nor should it, especially as we are (rightly) moving towards it being identified as a difference rather than a disability.

Obviously, autism quite often also comes with disabilities and difficulties with daily living. But purely a diagnosis of autism in itself is not a disability.

Burnout isn't a reason to get PIP. I have anxiety and also can't work full time - I certainly wouldn't expect to receive PIP for that, because I get by OK.

Benefits are for people who can't cope without them. You can cope, so you don't need them.

Its quite challenging for anyone to get PIP i dont think the questions lend themselves well to the type of support autism needs either.

The UN was pretty unimpressed with the uks government treatment of disabled people in thier recent judgement. It wasnt widely reported in the press though.

My DD has level 1 autism and gets PIP. She told them what she can do (some public travel with an escort), what she can’t do (personal hygiene, cooking, driving, struggles with socialising etc).

They do ask some of the same questions phrased slightly differently (I was in the room for her interview) which would catch out ND people. But she’d read up online that this was a trick they used. So she thought through her answers, and answered them slowly.

There was a couple of points the assessor had either not understood, or had deliberately misinterpreted when we got the paperwork through. But as she was awarded it she decided she was done and didn’t want to fight it. The contrast between the PIP assessment and the Disability Student Assessment was like night and day. Student disability couldn’t have been kinder and more helpful, the difference was shocking.

It doesn't really matter what your illnesses or health conditions are. All they care about is how often you can do the daily living and mobility components.
If you said you nearly always or always can feed yourself, cook, manage finances, interact with others, bathe, physically walk etc then you'll get a low score.
So it's about how the condition affects you.
If you answered truthfully on the forms and assessment then your needs must be too low.

Surely you can appeal, but if your answers are the same then so will the decision most probably. Did they not send your decision letter along with the points you got for each question?

Pip is not there to make up a short fall of wages, it's there to cover the costs of care needs and you don't seem to have any?

Well by the sound of it you don’t have to have care needs and you aren’t required to spend PIP on care. Posts from other people on MN:

“I work 30 hours over 4 days and claim pip for autism. I used the money to drop a day a week and avoid burnout.”

“PIP is intended to cover the extra costs of living with a long term health condition or disability. If that means topping up income when you cannot work that's perfectly reasonable.”

“it's to enable those with a disability to level the playing field. That poster IS using it for care by avoiding burnout. They can use it for whatever helps them.”

“You seem to be deliberately missing the point that that pp IS 'using it to pay for care', so they can work but accommodate their disability and not get burnout.”

"But purely a diagnosis of autism in itself is not a disability."

You sure? The only people I know who have a diagnosis have one because they're disabled by it. You don't get a diagnosis just for fun.

"Well by the sound of it you don’t have to have care needs"

Look at the criteria. You need to have care and /or mobility needs to qualify

Hi OP, I think you'd need to evidence burn out from work in order to qualify a payment to help prevent future burn out.

So if you've been able to manage so far, the system is designed to assume you can manage without.

Simarly for counselling, you'd need to start therapy, get a letter from a therapist saying it is helping you be able to maintain work and that you've had to quit (both work and therapy!) as you can't afford it without PIP.

OP, I think you are mistaking what people are saying. I think people are possibly saying that the reason they decided to claim was to allow them to drop their hours? Rather than saying inability to work full time is the reason they were awarded?
That’s the same thing? You drop your hours because you aren’t able to cope with working full time?

I’m now on my third 3 year award of PIP for autism - enhanced for both components

Complete nonsense. Autism on its own is ‘an arrest development of the brain’. It is a disability in its own right and you’re being disingenuous at best.

That’s what I thought. It’s not uncommon now to have 4/5 children in a class of 30 with a diagnosis of autism.

In my experience of assisting in these forms it tends to be the other way round.

People work part time/less hours and claim PIP, arguing they are unable to do more than that.

If you ARE working full time and have done for 10 years then it’s a lot more difficult to try and argue that you can’t do that and need PIP instead.

@Bluefell

I didn't mean it MUST be spent on care but rather that's what it was designed for. To offset the increased costs that are associated with being disabled. You don't have to submit receipts etc. PIP wasnt brought out for people to reduce their hours either, it was designed to encourage and help the disabled to enter and stay in work as well. I'm curious, you obviously filled in the forms as you were assessed. Did you /do you have any care needs?