Published on 12, July, 2020
Hi. I have only been looking at what is available in England but really, if you are able to function in the home and have worked in the past, I think that the financial support ie benefits + any other type of support = 0
I've read again and again on these forums about the lack of any support for people who are 'functional'.
I gave up work because of stress but I am lucky because my circumstances changed to allow me to.
However, many autistic adults still have to try to function in a working environment no matter how stressful.
It really is the 'hidden disability'.
Does anyone know anything different?
Thanks
Pip is supposed to cover, among other things, issues people have being isolated, unable to engage with wider society. But it presupposes that issues with this will be with mobility or written / verbal communication. It doesn’t properly gauge the impact of poor nonverbal communication on the isolation of autistic people.
I did most of my revision for my uni finals in the toilets in the basement of the maths department. Hardly anyone used them. It was a much better environment for study than the library, which was busy and noisy.
Thank you for that clarification.
The system is set up for everyone to fail the first application, at one point success at appeal was over 75%. They hope people won't take it that far.
But PiP is supposed to cover the extra costs to an individual of having a disability, not living costs if they aren't able to work (that would come under UC). A support worker, an adapted car, physio etc. What extra costs do you think there typically are to being autistic? Other than possibly needing a support worker for communication, travel or self care, which are mentioned in the PiP criteria.
But PiP is not supposed to cover the costs of not working because of a disability or health condition, that would be part of UC. PiP is to cover the additional costs to all people with a disability of having that disability. Being socially awkward, for example, doesn't actually cost you anything, whereas needing a support worker to prepare your food clearly does.
Its not really about it not catering to hidden disabilities though, its quite possible to have severe and visible physical disabilities and still be rejected for PiP as the 'assessors' don't want to grant it and force the majority of people to apply for mandatory reconsideration and then appeal. They save money by lots of people giving up some way along the process.
I just get standard rate daily living, which I was able to maintain through being cute enough on the phone assessment last November.
This happens when I am confronted with aggression, or passive aggressive behaviour. I immediately start to cry, even if i appear calm. If the other person notices and cares, I may be able to tell them it's a reaction, but more often than not, it escalates into full blown panic if I can't control it.
Peter said:knife draw
Sorry, I'm a compulsive pedant, which is why I cannot ignore things like this. The thing that slides in and out of a piece of furniture, that stores other things, is a 'drawer'. Sorry, sorry, sorry.
Well I doubt any high functioning autistic person could claim pip uless they had other issues as well. lets run though the criteria.
1 – Preparing food
Can the person make pancakes or beans on toast. Not necessarily do they but could they if they were shown how. Would they be safe left with the contents of a fridge, knife draw and cooker. Could they crack an egg, pour in some flour and milk, mix it then tip it in a frying pan without cutting or burning themselves? would what came out be safe to eat? then they score 0 points.
2 – Taking nutrition
Can the person eat a meal with out being prompted or supervised. If they're left unattended but provided with suitable food will they eat at least once a day with out assistance? if so 0 points.
3 – Managing therapy or monitoring a health condition
Can the person take pills / injections when they're doctor says they should. Do things like monitor their blood sugar, use an oxygen mask. Can they do it safely on their own without help? 0 points.
4 – Washing and bathing
Can the person use ordinary unadapted baths and showers to wash without special tools? Do they have the cognative capacity to remember bathing they should do and the energy to do it?
5 – Managing toilet needs or incontinence
Assuming they're not incontinent. Can the person take a pee, sit on the toilet, take a dump, wipe their bum and stand up, without help or special tools? 0 points.
6 – Dressing and undressing
Can the person take off and put on clothing normaly with out help or special adapted clothing? 0 points
7 – Communicating verbally
A non verbal autistic person is probably going to score 12 points here. a verbal autistic person of normal intelligence is likely to score 0. because the intermediate gradings only discuss the ability to form simple or complex sentences aided or unaided not the ability to make those sentences socially appropriate.
8 – Reading and understanding signs, symbols and words
Can the person read and understand a book (even if they need glasses), even if the book has big words in? 0 points.
9 – Engaging with other people face to face
Theoretically an autistic person could score an maximum of 8 points here if they either can't interact with most people at all with out having a panic attack or their behaviour is so eratic that others are actually afraid of them. However if they are confident to go out an ineract with people with out help, even if they keep causing others offence it's more likely to be 0 points.
10 – Making budgeting decisions
Can the person keep track of their bills? Do they know what they have left over to spend and how long it needs to last. 0 points.
So realistically high functioning autism alone can get you 20 points if you're non verbal and are likely to have a panic attack every time some one talks to you but more likely you'll get 0 points if you're verbal and just horribly awkward or bad at social situations. The threshold for basic support is 8 points and 12 for enhanced support. So autistic people who are 100% non verbal are likely to get enhanced support off the bat. Verbal autistic people with social anxiety so bad they have panic attacks when people talk to them, or social skills so bad other literally fear them most of the time may get basic support. Everyone else can go whistle they get nothing.
That's my interpretation of these guidelines. Really PIP is a joke when it comes to autistic people. It's deliberately designed with physical disabilities in mind. About the only way qualify with a mental condition that doesn't effect intelligence is to be so depresed you need help with managing most of your life including taking the antidepresents.
I got zero points, although I have suffered severe panic attacks in social situations leading to unconsciousness.
The assessor concluded in his report that since I had a degree I had no social relationship problems.
Autonomistic said:Personally I have been well and truly put off applying, due to the overwhelming distress and anxiety the assessment process would likely cause me. Also my perceived low likelihood of success and not being able to face another rejection. I convinced myself that I would be able to eke out my savings, by living frugally until the first of my workplace pensions starts in a few years. However now with the current cost of living crisis I'm not sure if I can still do that.
So sorry to hear that.
I managed to escape from work by a combination of my husband retiring, a lump sum from a small personal pension I took out when younger and a legacy.
Thank you for sharing so much information on this thread.
It's very helpful and enlightening.
All the best.
It is not widely understood that PIP can be claimed by someone who is in full or part time work. The benefit is designed to cover the additional costs of living with a disability and it is not necessary to prove that a person cannot work.
Although it is mainly physical there are points available for relating to being unable to socialise, speaking, understanding and being unable to plan and follow a journey. There is a helpful guide on the turn2us website, detailing how many points are available for each part of the assessment.
https://www.turn2us.org.uk/Benefit-guides/Personal-Independence-Payment-Test/What-is-the-PIP-test#guide-content
From that website the socialise guide content states:
You can socialise with other people, on their own or in small groups, without any help.
Examples of socialising:
You can only socialise with other people if someone else reminds you or encourages you.
You need a specially trained person or a person who knows you well to help you to socialise with other people.
Examples of a specially trained person:
You can’t socialise with other people because it makes you hurt yourself or other people.
You can’t socialise with other people because it makes you so distressed that you can’t do anything.
Examples of so distressed that you can’t do anything:
I really don't know how they can score any autistic person 0 points on this section alone. The person wouldn't have been diagnosed if they did not have difficulties with social communication, as that is one of the diagnostic criteria.
Yes it is a hidden disability and the system is not designed to cater for hidden disabilities. There are so many examples, on these forums and elsewhere, of autistic people being awarded 0 points.
The whole process needs a total reform so that it meets the needs of those with hidden disabilities. Having to be assessed by phone or face to face can be so distressing and overwhelming for autistic people. I would fall at that first hurdle of having to telephone to apply. When asked a question autistic people can misunderstand, need extra time to process and be likely to give one word answers in a desperate attempt to escape the overwhelming assessment environment. None of this is taken into account and the people doing the assessments do not seem to have sufficient knowledge of autism and how it presents.
There's an interesting article here https://eachother.org.uk/personal-independence-payment-is-vital-but-the-system-is-deeply-flawed/
A current research project looking at the issue https://www.autistica.org.uk/our-research/research-projects/disability-benefit-assessments-for-autistic-adults
A glimmer of hope that autistic people may not have to be continually reassessed in the future https://questions-statements.parliament.uk/written-questions/detail/2022-05-26/10043/
Personally I have been well and truly put off applying, due to the overwhelming distress and anxiety the assessment process would likely cause me. Also my perceived low likelihood of success and not being able to face another rejection. I convinced myself that I would be able to eke out my savings, by living frugally until the first of my workplace pensions starts in a few years. However now with the current cost of living crisis I'm not sure if I can still do that.
This thread is a good example
https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/28430/rejected-by-pip
Oh yes ! I have the bladder of a horse, but many people must think that I have a 'problem.' Just a few minutes away (even in a tiny smelly cubicle) can be enormously restorative.
Autonomistic said:Open plan offices are an autistic persons worst nightmare. I eventually suffered a major breakdown as a result of them and haven't been able to work since.
I'm sorry to hear this.
This is the point I'm making really in this thread - if you wanted to receive any benefits ie PIP (I don't think there's another available) you would need to have
difficulty doing certain everyday tasks or getting around because of your condition'
That's mainly a physical based assessment but also, it's not in the home that we mainly suffer (if it's a quiet place) it's at work. I hope I haven't generalised too much re this home/work difference. Apologies if I have (and please correct me).
I've walked out of several jobs, usually very upset, whilst being single and with no financial back-up.
I've also been made redundant several times presumably because I didn't fit in and/or wasn't able to perform the task adequately in the environment I had to be in.
In more than one office I was trying to listen to audio tapes to type up medical letters whilst radios were playing. Ugh! Why do people want radios on whilst trying to work and concentrate?
Ugh.
Me too!
Open plan offices are an autistic persons worst nightmare. I eventually suffered a major breakdown as a result of them and haven't been able to work since.
Some of the people used to talk non stop the whole time they were in the office. I really don't know how they ever got any work done. As a result I couldn't get any work done either, since the noise was an overwhelming sensory distraction for me.
Then there was the constant noise from phones ringing, photocopiers, printers, buzz from the fluorescent lighting, etc.
I used to plead with my manager to let me work in an empty meeting room to get some respite, but all my requests were denied. Had I known I was autistic it would have been a reasonable adjustment which might have been granted.
Martin said:From time to time I would go either to a toilet
I used to sit in the toilet for respite from my busy workplaces too.