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?

My son is ASD complex needs and gets high awards for both, He can only make 2 journeys at present one to the local shop 5 minutes away and a defined bus journey from one campus to another with life skills. His ability to ensure nutrition is variable eg he tried to make mushroom stroganoff with wine vinegar, it was inedible and he decided life was not worth it so got sent home late from life skills. Or he might eat tuna for breakfast or microwave a salad. He is constantly despairing about interacting with people and we have to intervene or college has to intervene. He will be on an education / social services shared cost PA but that PA will have expenses eg buying a coffee or lunch so PIp funds the PA expenses. As things stand he has several quite high scores and frankly if I really thought about it when the low scores would ratchet up as even when dressing he has to be told eg don’t wear suede trainers on a muddy dog walk and in November a coat is a good thing or now it’s summer shirt sleeve T shirts are ok. Added to that is poor executive functioning, lack of awareness at times of day and night etc

Ultimately it depends on how severe the ASD is and yet my son will go to university next year with lots of support. The severity of the ASD is not necessarily linked to intelligence as some have identified spiky profiles and are really really vulnerable.

I was unfortunately very briefly a pip assessor about 5-6 years ago. Autism is very hard to claim for.

Unless there is supporting evidence that without another person present to prompt, guide or assist you to feed yourself, wash yourself, keep you safe when interacting with others, and stop you missing bills etc, then you won't get it. - or at least this is how it was when I w

And to do those things to an acceptable standard is a very low bar, for example we would have people saying "i just live off beans on toast or soup" basically, as long as majority days of the week you were preparing some form of hot meal (even if just sticking some beans in microwave and toasting some bread) that is acceptable. Same for washing and dressing, if majoring days of the week you are getting showered, then that's enough.

If someone worked, that nearly always excluded people as the argument would be if you have the autonomy, motivation and personal organisation to hold down a job, then it seems inconsistent that you can't feed / wash yourself - i understand personally that this rule doesn't always apply, but under the criteria of pip that's how it's looked at, very black and white.

Hi greasypolemonkeyman (the first couple of lines are meant for you - the rest for people who query why benefit expected/paid)

It is only right that your son gets DLA/PIP - I believe he may have transitioned to PIP has he? I wish people wouldn't keep asking why people with Autism or other MH disorders receive or should receive money and ask what they would spend it on. I have worked in care with people with LD and/or Autism - some HF and/or severe MH disorders/issues. Having this or any other illness, as you will know, is not the issue, it is the way that it affects you and impacts on "normal" everyday life. If someone has an illness that affects the way they live and the issues/effects of a partiicular illness, stops or restricts that person from going into mainstream education and/or employment (if not diagnosed with ASD or ADHD until they are an adult, which there is a lot of people who are not being diagnosed until later in life) then they will need an income just like everybody else. Some may spend it on going to Centres to socialise (if there are any still open) so taxis there and back, drinks, snacks. Some people live in Semi -Independent living and need money to furnish/decorate their own room and in my experience also contribute to mixed areas such as lounges/kitchens etc They buy their own toiletries and may have a hobby such as knitting/playing a musical instrument/Jigsaws etc. Where the person may live with parents or relatives or partner, they may only eat certain foods either because of dietary requirements or they may insist on certain foods for their own reasons, whether we think strange or not. They may need taxis just to go shopping or to a medical appointment, because they cannot manage a bus journey alone or they may not like to talk or be talked to by others if they were to use public transport, and may be too vulnerable to walk alone or may just be unable to find their own way by walking to a destination.
I am also not saying the following happens in all Care homes/supported living/semi Independent living, but in a few I worked in, the residents when they were going on holiday or other socialising like the Cinema or a trip to the pub (they all drank soft drinks) as they needed staff with them, in a lot of cases, they had to pay for the staff cinema ticket. soft drinks in the pub, meal out and for the holiday, mini bus/taxi to holiday accommodation and staff's room at location of holiday. Sometimes the organisation who owned the supported living would pay for staff to accompany resident on odd day out, but usually it was the person who was resident who paid all costs. A lot of people still live with parents but employ someone to accompany them if they need to go somewhere and cannot manage themselves so there is more expenditure. Parents cannot be expected to do everything as they may work or one parent may work fulltime, they may have younger children or the parent(s) may actually be elderly or infirm themselves. The person with the illness/disability buys their own clothes and sometimes - not always - the person may have rituals or ocd behaviours that could mean they wash their clothes after only been on half an hour, imagine that clothes do not last that long when washed all the time. Often they get pleasure/solace in music and will buy CDs/LPs of a favourite artist - every one that was ever produced. The person with ASD/ADHD usually have complicated issues - far too many and far too complex to explain here, but the parents and carers know exactly what I mean. Just because most of us are lucky enough to be able to walk or get public transport, go to medical appointments alone, go shopping, socialise, talk to a stranger at a bus stop or a bench we are sitting on and joined by someone who decides to also sit there and chat, we shouldn't lose sight of the fact that a lot of people can't. The DWP and Assessors ask enough questions without some people on here repeatedly asking the question on what would they spend the money on.