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?

PIP isn’t just for paying for care. And a person doesn’t have to need paid for care in order to be eligible for PIP.

PIP is to help with extra living costs associated with the disability/condition. For example, it could be the need for taxis rather than public transport, or pre-prepared vegetables or higher water/gas/electric costs or higher clothing costs…

X post with @TigerRag who mentions many of the same costs.

A carer can be a husband/ wife/parent.

I have to give my dd medication. She’d forget if l didn’t despite millions of alarms. Shes also self harmed, so we give it her. So she scored on managing medication. It doesn’t have to be a paid for person. Some of her pip is spent on therapy. A lot of it is spent on private health as there is no proper nhs. It’s not just for caring.

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

Of you meet the criteria for a diagnosis of autism you also fit the legal definition of disabled.

Because your above post is incorrect and it’s quite ignorant to make comments on something you obviously know little about?

@CanNeverThinkOfAName clearly I do know because I'm on pip & autistic myself? Bizarre comments.

I have three DDs with ASD, two with full PIP awards and one with DLA. They all have very different profiles.

You need to focus on the Activities that PIP assesses. For each activity, you have to consider:
Can you do the activity independently?

The rules for being able to do it independently is that you have to be able to do it safely, to an acceptable standard, as often as needed, in an acceptable timeframe (at least half as fast as someone without disability).

If you can't, can you do it with prompting? Or do you need supervision? Or assistance? Or do you need someone to do it for you?

You need to be aware that the words in the questions have very specific meanings, often defined and tested by the courts. For example 'complex information' for the reading task means 'two sentences or one complicated sentence'.

A simple meal is a meal, for one, cooked from fresh ingredients. If you can make an omelette you can be considered to be able to cook a meal.

But the effects of disabilities can stack and stop you from doing something you would otherwise be able to do, so you can state that. For example, if you work and the effort of going to work means that you can't cope with cooking a meal after work finishes, so you just have a packet of crisps, etc., then you can explain that.

For a difficulty to score points, it has to affect you more than 50% of the time. So if you are ok most of the time but struggle to bend down to tie your shoe laces once per week, it won't score.

Nobody gets PIP so that they can reduce their work hours. But some people use PIP to reduce their hours. They should bear in mind, though, that if reducing their hours at work makes a material difference to their ability to perform the activities in the PIP form, they should tell the DWP.

Pip is for extra living costs if you have a disability, not necessarily care needs. Personal independence payment, it costs a lot to be disabled and it helps fill that gap. Lots of people on here are talking out of their arses.

The pip forms are, unfortunately, a box ticking exercise to see if you're disabled in the 'right' way. It's a very flawed system and I'm sorry it's not working for you OP. Have you looked into ESA? It's for people who struggle to work due to their disability rather than living expenses.

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

In order to get a diagnosis of autism one must have difficulties that limit and impair everyday functioning.

The Equality Act "defines a disabled person as a person with a disability. A person has a disability for the purposes of the Act if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities” (S6(1)).

If you meet the criteria for an ASD diagnosis you meet the criteria to be classed as disabled.

"The Equality Act (2010) places a requirement on public services to anticipate and prevent discrimination against people with disabilities, which includes people with a learning disability, autism or both."

NHS England

My DH who is registered blind and severely mobility limited was refused PIP first time round.

And my best friend's sister has just been awarded PIP no questions asked on the basis of boohooing to her GP about being unable to work due to depression and back ache. She's bragging about it and laughing about the am dram session she put on at the telephone interview.

The system is shit.

@Lougle

Can you explain why you have quoted that on my comment I don't understand what you are saying.

I was backing your comment up with a quote from NHS England that further expanded on it.

@Lougle

Thank you!

My DS has HFA (previously Aspergers) and anxiety - we were turned down at Tribunal as "he functions fine"

Fuck off

Judge said "why cant you do x, y, z? set an alarm or 10" I mean come on! If he ignores one alarm then the others wont work

Absolute rubbish

Yes, he got A Levels, because we (his parents) took him everywhere and sorted his study schedule, Yes he got to uni, because I did all his paperwork and money

Bastards!!!

This is the PIP scoring system. You have to meet certain thresholds to be awarded. It's not based on some single factor like "work burns them out"
https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

There’s 3 kids with autism in my DD’s class of 25.

We need to seriously think about how on earth we are going to be able to support everyone with needs in 20 years time, while not pushing those in work to nervous breakdowns by sacking off the pension age and taxing them until they leave the country or go off with stress themselves.

It’s a car crash waiting to happen. We need to start managing people’s expectations about what the country can realistically provide because everyone forgets it all costs money.

Pip is assessed on criteria so as an example my son is high pip for care / mobility and at life skills

travel- at life skills make first solo bus journey at aged 20 heavily practiced and route learnt - high needs

cooking - follows a recipe to varying levels of success from inedible to ok. Needs prompting and inclined to eat crazy things eg chilli sauce on a wrap or microwaved salad. Set fire to a wrap - high needs

clothing - panics about appropriate clothing eg going out or staying home clothes - prompting to wear coat when cold or welly boots when muddy etc

self care prompting needs support to shave as misses bits, also with nail cutting due to motor coordination etc blocks toilet due to constipation and can’t unblock etc - would rapidly deteriorate in appearance without support/ prompting

psychological support - under a therapist/ counsellor - variable moods - self loathing or self pity - gets angry etc etc

sleeping on melatonin - will occasionally do a night time pacing at 2am onwards or fails to go to end without prompting

general forgets time and space - in own world and for o stance kept transport / taxi for life skills waiting an hour outside college as tool himself into a quiet room to study and no idea of time etc

money - too high anxiety to manage - fear of bank cards etc

You need care needs to qualify - surely? The assessment is made on how you answer the questions, so if you don’t need help with anything listed you’re not going to get enough points. Not everyone with autism will qualify no, as many people manage ok without needing to pay for assistance / to make their life easier. PIP isn’t a benefit that compensates for having something wrong but you get the money to pay for help

Yep. If you’re willing to stick with the forms and see the process through the bar isn’t that high as far as I can see.

No, a person doesn’t need to require paid for care in order to qualify for PIP.

I'm sure we could come up with d that doesn't affect the more vulnerable in society.

Like what? It seems nearly everyone is vulnerable now or has some kind of issue.

But by the very bases of calling it ‘high functioning’ autism it’s already giving the impression that people like your son are, well functioning highly. This is exactly why autism should be referred to as just that without any prefixes suggesting it’s a ‘not as bad autism as the other ‘type’’. Using language like ‘functional’ is doing a great disservice to autistic people.

The bar is quite high, I think. If you can get washed and dressed and cook a basic meal, read, write and talk to people, it's unlikely you'll get many points on PIP.

Not read the whole thread, but depending on what support you're looking for you might want to consider Access To Work.

There are lots of examples on ADHD UK and also if you Google it there appears to be plenty of ASD examples. It can be used as a grant for counselling, work adjustments etc.

ASD Access to work page

ADHD access to work explanation