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?

That's so great to hear. It gives me hope for the future.

Bunkum! Your post is clearly untrue regarding your best friend's sister. Lots of questions are asked. That is a given.

Yeah, l thought that.

We had to send in so much evidence.

My sister has Aspergers and lives a small life. I highly suspect thats why she works part time, she manages, has a partner, owns a house etc etc.

Why would she qualify for PIP she has no care needs, that is what PIP is for.

We’re claiming PIP for my nearly 19yo who has ASD and ADHD, but also severe MH issues (anxiety, depression, social phobia) - she has 10 GCSEs (G7-9) so intellectually she is high functioning, but she hasn’t been able to stick to 6th form, a part-time job, or even home-schooling. We’ve not had the decision yet, but they’re sending someone over to meet us tomorrow and vet me as her legal appointee (she can’t manage paperwork or even remember/attend appointments as she gets overwhelmed at the moment). I’ve assumed this means we meet the criteria… although we started the application process in November and still haven’t had a penny yet. PIP for her is to allow her to have some independence whilst trying to get herself on track. We’re hoping it’s only for a year or two and that she’ll eventually go to uni (admitted living at home) and start work at some point, when her ability to live alone/move out will need to be assessed.

@colouredball thank you. I've checked and you are right I couldn't have got 8. I got 6 in the care and 0 mobility.

I wish I had appealed now.

Just a couple of things - you get PIP based on potential care needs and/or mobility needs. The care needs don't have to be currently being met - for example if you live alone, but struggle to cook a full meal so live off crisps (or whatever) that need is still there even if someone isn't cooking for you.

When you get awarded PIP - what you then do with it is up to you. So if you use it to reduce your working hours, you can do that. But that's not what it was awarded for as you have to meet their criteria.

Finally - it's really hard to get PIP or DLA. It took me three attempts as a wheelchair user with a very severe, complex condition that has to take morphine daily to survive.

Attempt 1 I was rejected, mandatory reconsideration was rejected, and the tribunal rejected me.

Attempt 2 the same - rejected, MR rejected and tribunal rejected.

Attempt 3 - was given it indefinitely at the highest rates and the doctor apologised for the fact I wasn't given it the first time.

I know it's easy to focus on other people - but if you go through the criteria and believe you meet it for THOSE reasons - not the reasons others have mentioned, then keep going. I knew I met all the criteria - but they would argue the opposite. I would state I can't walk x distance so use a wheelchair, they would write 'can walk 600m' with absolutely no evidence to back that up. I had diagnosis letters, piles of letters from various specialists etc.

Get help with your application and follow it through. Remember each task you have to be able to do it repeatedly, reliably and safely. If some days you can cook a meal fine, but others you would need to take breaks, or have the process explained to you, or need support - that all needs to be explained to them as you aren't doing it reliably.

Would the quiet life be inability to socialise?

Looks like you're just ignoring everyone's responses.

You don't just get PIP for something that minor, even people who do actually need it get refused it.

i used to get dla when it changed over to pip i all of a sudden wasnt eligible

nothing had changed i got worse actually

I'm sorry, what? Autism isn't "minor"

Some of you really need to educate yourself. For a start it's a spectrum.

I have ASD and receive PIP at a high level but I have several other serious health problems, like chronic pain and COPD.

Why do you need PIP money for that though? It’s not costing you anything if a parent is doing it for free. Genuine question, I don’t see how money helps the situation?

@Bluefell

Why do you need PIP money for that though? It’s not costing you anything if a parent is doing it for free. Genuine question, I don’t see how money helps the situation?

You don't need to 'see' - if you don't qualify you don't qualify but questioning the use of other people PIP is not ok. The government doesn't want to know what I need the money for, specifically, so neither should you.

Why do you need PIP money for that though? It’s not costing you anything if a parent is doing it for free. Genuine question, I don’t see how money helps the situation?

My partner gets PIP for ADHD. We don't pay for a carer but because of his ADHD a lot of things fall to me. The housework doesn't get done unless I do it (despite working full time) so the PIP helps pay for a cleaner. That's a care need because he can't do it himself. He is completely time blind so often forgets to pick up our toddler from nursery. The PIP helps pay the fines or compensates for me needing to take extra time off to make sure we're not fined. He can't deviate from his decided route once he's driving somewhere. The PIP helps pay for the extra fuel he ends up using etc

PIP isn't just for 'care needs' it's for all the tiny ways a disability costs you more money. We didn't even realise the hundreds of ways it was costing us until we got help to fill the form

Read the rest or my post as to what we spend it on.

I was just pointing out that managing medication is one of the points on the pip form.

I’ve tried twice and they’ve not awarded it. They just come back with a list of reasons why I’m ok, such as taking my dogs for a walk and communicating with the assessor!!! I can’t work full time because my life has to revolve around self care so that I don’t burn out and if something even mildly anxiety-inducing happens I can’t focus on anything else.

I couldn’t bring myself to appeal because they ask things like ‘Do you change your underwear every day?’ and you’re expected to say no. They expect us to behave like smelly imbeciles.

However my son was awarded PIP, presumably because I can say I’m doing certain things for him. It seems to be being questioned now he’s at university though.

She is unable to socialise yes. Its not a care need though/mobility

Pretty much anyone with a moderate to severe MH issue will get burnout once in a while, because managing a MH issue alongside work and caring for dependants is a massive responsibility.

It all boils down to the fact life is hard and many of us have physical or mental health issues, and all we can do is cobble it together and keep going because if we all dropped out of the workforce or claimed additional benefits there wouldn’t be any money to pay those benefits to start with.

I find all this ‘why can’t I have it?’ to slightly lack in self awareness and awareness of our economy and social contract as a whole.

Have you asked for your health report and a mandatory reconsideration?

Engaging with others is one of PIP’s daily living activities.

I find all this ‘why can’t I have it’ to slightly lack in self awareness and awareness of our economy and social contract as a whole

Yes absolutely this

It’s not about what “condition” you have but very much about how it affects your everyday living. And if you can carry out tasks safely & in a timely manner. So for example, you can’t go to the supermarket because it’s too overwhelming. When driving, you struggle to follow directions, etc

She works, has a partner and engages as much as she likes (which is very little), she doesnt want to engage with people. And while she may be compromised in terms of what I or others might think is a 'normal' level of social interaction, its not a care need.

If she is unable to interact with other people without social support she would get 4 points just for that.