To think most autistic people can’t claim PIP?

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.

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.

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.

My daughter gets full rate. She won’t use public transport.

Shes articulate and clever.

My adult son get’s high rate for both for adhd and asd. He has done since the day he turned 16 and it’s an award with no end date. I know a young woman in his community support group who gets a full award for both rates for ADHD coupled with suicide ideation and self harming etc.

In my experience most people who are ASD struggle to get PIP now - never mind when the rules change
The few that do are on lower rate daily living with a few getting lower rate mobility
I work for a charity who help people with disabilities and long term health conditions on a range of issues
The only person I know (personally) who gets higher rate for both has severe ASD, is non verbal, cannot look after themselves or keep themselves safe and is only not in residential care due to having an amazing DM who had to take early retirement to care for them when they left residential school/college at 19. She now gets a pitiful amount in carers allowance. PIP helps an awful lot with their additional costs

Only being qualified to do low paid roles, for whatever reason, does not mean that you should be eligible for PIP. Lots of people work in supermarkets, care homes and warehouses. Working for minimum wage is not a disability. I know you feel that you should have achieved more, but like many, many people you haven’t been able to.

I have in the past worked with people who have Autism, some that medical practioners describe as high functioning - this is where I think the misnomer appears. Your son as many, many people I have worked with or have known, is intelligent, can study for hours and may like to have every sentence, every equation, or every fact absolutely perfect. That usually means that the person has quite (I don't like to use the word severe but I'm not meaning it in a negative way) severe Autism. Yes they are intelligent but that is not the issue. I have worked with people who have stayed up all night working on an essay to perfection (to me it was already perfect but to them it wasn't). Could the same person draw up a shopping list easily, plan a journey for themselves to travel to a destination just a couple of miles away, cook themselves a meal, being aware of all the necessary ingredients and how long to cook something for and what temperature - no they couldn't, not without spending hours on the internet looking up all the ingredients and going over every detail about each ingredient, sometimes over and over again. Then writing it all out several times before even embarking on the task of going to get the ingredients.They would then usually need someone with them to go and buy the ingredients as they could have a "melt down" if the store did not have one or more of the ingredients and the nearest next likely shop to have the ingredients was a mile or so away. Some people with Autism display highly above average intelligence but cannot function at a normal everyday level and accept the issues of having to trail to a few shops or change their mind about what to eat so they can just buy something else.as we would do. But I do not need to tell you this and I don't mean to sound patronising, I just need others, especially "Assessors" (many in the past have no medical background at all) to actually experience being with someone with "high functioning Autism" for a reasonable tinme not 20/30 minutes maximum that they are assessed for. Sorry to ramble, it just gets me so mad.

I'm looking into this both for my daughter (about to turn 16 and gets DLA but not sure if she would get pip) and wondering about myself (currently waiting for assessment).

I'm quite worried about the pip for he rin particular as both of us have crazy IQs and appear "clever". However in terms of money I've never held down a full time job and haven't managed to work out how to progress/what to do to progress so my income is tiny despite high iq. These aren't pip questions at all but to answer the previous question about having less money I'd use it for things like food and bills in the main. And then adhd coaching/counselling if I could and a meal prep thing like giusto so I would eat healthier.

While PIP might theoretically be intended to pay for additional expenses associated with disability, for anyone who isn't able to earn much or anything at all, it's obviously got to be used as basic income, since the social safety net has been so comprehensively dismantled. The greatest cost of disability for many if not most is lost earning capacity just to pay for the basics in life. Many people on PIP cannot therefore use it to pay for therapy or other things like that that might help - it will go on the heating and rent if they can't earn enough to cover that themselves and are ineligible for UC because their partner earns minimum wage or however much disqualifies you. If you're "lucky" enough to be able to spend the full amount on things that would help you manage your disability you're probably in a minority.

‘Other people’s money’? What do you mean by that?

PIP is a statutory entitlement. Not a handout.

Whose money do you think it rightfully is?

That's exactly the type of evidence that could be used for PIP.
Worth looking if he can claim. Even if he can do everything himself but needs prompting or checking from you he is likely to score enough to be awarded. You would need to write a statement giving examples of the prompting , the consequences if you don't & the amount of time you spend each week.

If you think about everything you spend money on. Rent, food, heating, work, socializing, clothing, medical treatment, transport & then imagine having limited choices with the cheaper options impossible & costs always higher than for the average person then you will see how costs mount up.

This is interesting. My DS, 17, is awaiting ASD/ADHD assessment. After GCSE’s, he had to get a bus to college. I explained several times which bus to take and which bus fare to ask for. It was a nightmare, he either got the wrong bus or asked for the wrong fare. He even did things like asking for a return fare when he was on his way home. He then thought that he didn’t have enough money to pay so he got off the bus, at no point did he realise that he only needed to buy single fare. This led to me having to find people to collect him as he had no money left to get home. This went on for weeks. He has now got used to the journey so can manage.

PIP isn't scored on additional costs it's scored according to points based on daily living & mobility indicators.
Someone with high functioning autism is likely to be awarded PIP if they score points for needing assistance with complex communication & mixing with other people.
They don't need to spend the money on items/services related to the disability it is usually used more generally eg to socialize or work the costs would be much higher due to the disability. They are more restricted on choice of activity, location, transport etc

Maybe because we'll run out of other people's money eventually?

Oh yes, forgot about all the clothes he goes through because of chewing sleeves etc.

Ds1 has been diagnosed with Aspergers syndrome (before people stopped calling it that). His PIP goes mostly on the car. His piano is his stress reliever/comfort etc so we have to have a bigger car to cart it about. Ds1 needs to be transported to and from college and his other activities, so petrol. He can't cope with waiting unless he knows in advance so dh needs to be on hand to pick him up when needed. Dh went self employed and took a massive pay cut when ds1 was 8 so I had more help with ds1, ds4 and ds5 who both get dla. We also still have to take him with us on days out etc when with a 17 year old you could leave them behind if they wanted so pip can be used on that. I can't think of anything else off the top of my head but I can tell you that PIP doesn't cover it all.

Did you read the part about paying for a private psychiatrist?

As mentioned - certain foods, clothing, (some do chew their clothes) ear plugs / defenders, etc

@ArseInTheCoOpWindow

Sounds like your DD is badly affected. It doesn't answer my question though, no. How does money help?

My Dd is HF. If such a thing exists.

Shes in complete burnout. Cant read, cant talk to people, can’t leave the house alone, can’t catch public transport, can use public toilets, can only eat certain foods.

Dies that answer your mean question? 18 months ago she was at school with friends and had just passed 9 GCSE’s

Now she can’t leave her room.

And as there’s no nhs, we are having to pay for a private pyschiatrist. An adolescent psychiatrist which is twice as expensive as a normal private psychiatrist.

Off the top of my head:
noise-reducing earplugs and adapted clothing to reduce sensory overload,
"Safe" foods to cope with food aversions and gut issues,
Fidget toys to reduce unsociable levels of stimming in public,
Taxis for those who can't tolerate public transport and can't drive.

Out of curiosity, what do high functioning autistic people need PIP for? What expenses does their disability accrue?

You can have quite high needs and still not qualify for PIP. It's so frustrating when you don't qualify and sometimes it really doesn't seem fair. It's important to remember that no PIP does not mean no disability. Also there is often a lot of minimising going on with disabilities because we are so used to dealing with it that we forget it's not normal for a 17 year old not to be able to get the bus on their own for example. My 17 year old gets PIP (standard rate for care and mobility) for his Aspergers syndrome. Lots of people think he's just a bit quirky and would think that he shouldn't get it or if he gets it then other people should get it too. But he does have quite significant care needs, needs to be reminded to do most things and can only take 2 very short very familiar journeys on his own.

That's not harsh, it just sounds ignorant and closed minded... You might be able to DO all of those things, work, socialise etc, but it's the impact it has on you... for example, going to work but having to go to bed immediately after because you're so overwhelmed etc. It's not a straightforward you can do it so you're fine. If you can do all those things and not be impacted in any way at all, then fine