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?

The level the playing field part isn't necessarily the ££s. The leveling of the playing field is the independence part. Personal independence payment = giving the independence back to those who begin at a disadvantage to those who can function successfully independently

Take the money and care bit out of the equation and just focus on the word independence. Maybe that may help your understanding

Yes, you are awarded it for your needs, but you don't have to spend it on your needs.

For example, someone with social anxiety will be awarded because they can't leave the house alone. They can choose to get employ a care to accompany them out, but they don't have to.

Another example would be someone who needs help with cooking and eating a meal. If their husband does that for them, then it costs nothing. But if they lived alone, they would have to employ someone to help with that.

It gives you the opportunity to be independent in a personalised way. You can choose to use the money in the way YOU feel best meets your needs. If I can’t cook due to my disability, I may choose to buy microwave meals or get takeaways or employ someone to help cook.

Exactly. People with the same needs as me get a benefit I was turned down for, and I don’t understand why, given that we have the same needs. Moreover, people get money for their needs but then don’t spend it on their needs - so logically they didn’t need the money then?

And yes, I don’t understand why they’d give me money for being unable to socialise. Money won’t fix that problem?

Thank you to everyone who has tried to be helpful, this whole thing is so illogical and it’s clear that some people are getting PIP while others with equal or higher needs aren’t. Again, illogical.

Sometimes the money can be used indirectly. For example, someone could find shopping very stressful but it's easier if they take a taxi to the shop.

100%

I used to work in social housing, and watched so many vulnerable disabled addicts who were widley known to get PIP money constantly befriended and used by exploitative conners and dealers who would take loads of their money.... frustratingly if the tenants were happy with these "friendships" then there was nothing we or even the police could do 😔

@Bluefell it is entirely logical.

I would reapply using the STAR method.

When you fill in the form, you have to show the impact of your disability on your everyday life. We recommend using the STAR method when filling in your form. In each section you need to think about whether you can or can’t do something:
• safely and without risk to yourself and others
• in a reasonable amount of time
• to an acceptable standard
• repeatedly (as many times as you would reasonably need to).

If you are refused, do a mandatory reconsideration. If they refuse again, apply to tribunal.

Don't look at other people. Get support to identify your needs. Google each activity - rightsnet has guides to each activity and what each word means.

Don't assume that the person reading reading the form knows anything about autism. Explain your difficulties in detail. What do you find difficult? Why do you find it difficult? What do you/someone else have to do to make it better? What impact does it have? What would happen without that support?

Or choose to reduce the hours that a person works.

Your need could be extra heating to alleviate pain from arthritis, or it could be taxis so you don't have to use public transport, could be paying for private therapies, or it can just be used to support you with every day bills.

The government doesnt care what you use it for so you dont need to worry about using examples of costs to show you are eligible. Its a red herring for you.

You just need to show you meet the criteria. (If you do)

They have a list of very specific tasks, and they want to know whether you can do them safely, how long it takes you to do them, how often your condition effects you doing that activity and if you need help or aids to complete the activity. Then they award points. so if you can do the task safely, in a normal timeframe without help, everytime you need to do it, you get 0 and then the other extreme us you cannot do this task at all, ever Someone does it for you. Even if all that person is free to you because your carer is your spouse.

There are lots of guides, citizens advice scope, the NAS all explain it better than we can here.

Well you would need to purchase the alarms as they are essentially an aid to help you remember. Not everyone has a DH and may need to pay someone to do the same tasks your DH is willing to do for free. It's pretty straightforward.

OP perhaps you need some help to fill in the forms. Many autistic people I know do get PIP and are in work and drive. It's not about the diagnosis.

Its for care and mobility needs. If you don't have those needs then it shouldn't be paid.

Some people with autism have severe learning disabilities too and need lots of care (showering, toileting etc) and are unable to be alone. They have higher needs for care and help to get around.

We do need to start watching what we class as needing support, or it ultimately takes away from those who need support more.

Absolutely. I was giving one random example. The point is, that person is empowered to make their own independent choice on how they want their life to be better. 🙂

Money won’t “fix” someone not being able to socialise but for someone who is so isolated, they cannot go to a supermarket due to their social phobia, the PIP money could be used for; online deliveries, therapy to help them manage their emotions or someone to accompany them.

It isn’t simply “Jane cannot socialise, here’s a tenner”. It might be Jane is so unable to socialise, that she is unable to go to cafes or the post office. PIP money could be used to spend on a carer/support worker or therapies or perhaps the cost of an autism social group to help her identify strategies and find likeminded people.

Money cannot fix my physical health problems but it can buy support so I can manage them a bit better and hopefully live a happier, healthier and longer life.

The difficulty with autism is that you don't know who those people will be when they're little. DD2 was diagnosed at 11. Mainstream school, no support through years 1-4 despite me pointing out her ASD traits and her moving school twice because she fell apart. Year 5, support was put in place with some areas. Years 7-9 no support. Year 10, completely fell apart, rapid spiral, out of school, EHCP. Year 11 repeated year 10 in a specialist school. Completely fell apart. Now year 12 (but officially year 11 because the LA decelerated her), and on an EOTAS package with therapy being the bulk of her provision.

She is going to need years of therapy and very slow increases in demand to get anywhere. Her HT of her primary school couldn't believe it when she heard how things have turned out.

Some children can seem to have quite severe ASD as children but find their groove and manage to navigate a path with a little support.

I often think it depends on the combination of how you answer the questions and who you get as your assessor. It sounds as if you cope because your DH helps you. You probably would not cope as well without him. Can you cook a simple meal and bathe yourself or not. The questions are really straight forward. There are no questions about burnout which I think everyone is prone to to some extent.

Me and ds don't claim it as I couldn't face the process. I've only worked part time for a long time due to overwhelm. I'm hoping ds will be able to find a job after university, but whether he'll manage full time is another story. I think autistic people could be supported to work if they didn't have to work full time and then received PIP as an income top up to prevent poverty. I can't see the government ever doing this. They don't seem to realise that being disabled and disadvantaged doesn't always involve having care needs. I was a nurse, but because so depressed and burned out I had to quit completely and I'll never go back. I was suicidal and at the end of my tether, but I could still shower and get some cereal. People should qualify for PIP when things are this bad even if they can basically function and clean/feed themselves. The physical model of disability is so outdated.

I absolutely get what you’re saying OP. PIP works in very mysterious ways.

It isn’t simply “Jane cannot socialise, here’s a tenner”. It might be Jane is so unable to socialise, that she is unable to go to cafes or the post office. PIP money could be used to spend on a carer/support worker or therapies or perhaps the cost of an autism social group to help her identify strategies and find likeminded people.
Then Jane spends that money on cake, and still doesn’t get any help with socialising, so what was the point of giving her the money? It doesn’t make sense.

How is she not getting help in the scenario you are quoting?

You might find the Citizens Advice guidance helpful - they have a step by step guide. Your local CA office can help with PIP applications and appeals too, the advisors are usually very experienced. Often applicants downplay their needs - you need to write about your worst day(s).

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form-pip/

My 45 year old autistic son gets PIP but I have no idea how he managed that - his sister was helping him with the doctor and social services and she is a psychotherapist so I think she probably organized it all. Before anybody jumps on me for not doing it myself I live on the other side of the Atlantic from them and know very little about how the UK system works.

.... Maybe cake makes her happier, op 😂