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?

If you can work drive socialise with autism I don't think you need it. I know it's harsh and all situations are different.

I have had two pip tribunals and was awarded lowest rate both times. I'm like you and don't work drive interact etc. I think I get £28 a week.

There must be more to this.

How can we get full on both for being autistic? You just have minimised his needs here.

I’m sure there’s a lot more detail, but it’s clear he has to have support to have meals, shower, dress, and to undertake any journey to a new place. Those are significant care needs. Imagine what a carer would cost if his mother wasn’t providing that care for free, no doubt with an impact on her own ability to work full time.

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

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.

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

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.

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.

@ArseInTheCoOpWindow

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

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

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.

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

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

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

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.

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.

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.

‘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?

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.

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.

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.

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.

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

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.

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

Shes articulate and clever.