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?

I mean I don't know how exactly, but for a start most people's GPs are aware of their conditions, and how they are affected by them. Instead of sitting in front of Joan, at the assessment , who happens to be a physiotherapist, when the person trying to claim is suffering from heart failure, and a mental health issue, would it not be better to have more GP input?

I don’t think my gp knows who I am, let alone how my autism affects me.

I think you’re right that the process is horrible. I don’t know what the alternative would be though.

I see@WaitingForMojo . I just thought that most people's conditions, and disabilities would be noted on their medical records. I guess I am remembering my old Doctor, and how he knew quite a lot about my medical history, and how I was managing with things.

Your diagnoses will be noted but I remember a GP once saying that she has no idea how I'm really affected as I rarely see anyone for long term health problems

Yes, I suppose there will be people who would rarely go to their GP, and, just for want of a better phrase, get on with it@TigerRag . As you have said, you sadly do not have a diagnosis at present either, so I am not sure how that would work, when trying to apply.

What would be the point in me going to the GP to list all the things I need help with? It's not like the NHS is giving any help for the vast majority of autistic people. It's very much a case of 'here is your diagnosis, off you pop'

Same with my physical health problems, they are diagnosed and treated but the GP doesn't need to know how I am affected daily, they just need to know X problem needs Y medication

Do any of the autism charities offer help with the forms? In my nearest city, there is a local charity supporting people with ASD and they will help with PIP forms.

People with ADHD often qualify for PIP, too. The distraction factor can make it very difficult for people with ADHD to cook safely, or to follow a conversation properly, or to take in complex written information effectively. I have a niece with ADHD and EUPD, and I helped her get enhanced daily living and standard mobility.

My diagnoses would be on my records and my prescription for adhd meds. But they wouldn’t have a clue how my diagnoses affect me.

Then GPs input will not suffice for everyone. But the system at the moment is not working too well either. So we run the gauntlet with it, as it is currently.

Therein lies the problem (the "not being able to get a diagnosis" part). It's functionally impossible to get an autism diagnosis on the NHS if you're an adult these days, not least because GPs are often unwilling to "waste" resources when - in their eyes - there is no available support for autistic adults.

That's exactly what my GP gave me as a reason for refusing my request for an assessment referral.

And even if you do get on the waiting list, it'll be years before you get there. If somebody needs the diagnosis for PIP because they can't work, then what are they supposed to do in the meantime?

And it's complicated by the fact that autism isn't a static condition. Somebody who's perfectly capable of holding down a job in their 30s can often find it far more challenging in their 40s, and downright impossible as they move into their 50s.

I was diagnosed with autism as an adult on the nhs. I was lucky. Many people can’t access this. And in my local area, the wait is currently over five years.

I paid privately for adhd assessment. Had I not, I still wouldn’t have that diagnosis.

Other conditions take a long time from onset to diagnosis. I understand that endometriosis diagnosis averages years. My dd has been waiting over two years to see a Consultant for suspected endo.

Chronic Fatigue syndrome takes ages to diagnose, I believe.

I have a friend who has been having neurological assessments for 3 years and no firm diagnosis yet.

Accessing diagnosis is complicated and takes time. Sometimes it isn’t accessible at all. Doesn’t make someone less impaired.

Therein lies the problem (the "not being able to get a diagnosis" part). It's functionally impossible to get an autism diagnosis on the NHS if you're an adult these days, not least because GPs are often unwilling to "waste" resources when - in their eyes - there is no available support for autistic adults.

but you don't need a diagnosis for PIP. It's based on your difficulties and the extra help you need, not diagnosis.

But from experience you're taken more seriously with a diagnosis they've heard of

The advice l was given was go to your gp before you apply and make them aware of your limitations.

I did this, my gp wrote me a letter. I sent it to PIP ( still no diagnosis at this point)

l was awarded full rate first time.

This is true. However, if you don't have a diagnosis and your GP refuses a referral on the grounds that no support is available (which is very common, as I mentioned), then they're definitely not going to write a letter for a PIP application, which means your PIP application is much more likely to be rejected.

A diagnosis isn't required for PIP, but without it the chances are massively reduced.

As I said in pp my old GP was aware of my difficulties, but going by some of the replies I have had, it would seem that this is not necessarily the norm. Why on earth should the GP know these things? some may wonder. In my experience it has helped me with some situations I have encountered, where my GP was able to help, precisely because they knew.

Hi OP - there's a charity called Kester Disability Rights that can help you with a PIP claim - I think it's no win no fee but you should check. I think I read on their website that they'd never lost a case where the applicant had autism. They say that that day will likely come but so far there record seems very good (going on what I read when I was going through the process a while back so again it might have changed) - I'd definitely look into it - you sound like you should be eligible from what I understand and it's just a question of managing to navigate the system. They're utter bastards for the way they use people's disabilities against them to stop them from claiming.

No one gets PIP for having a particular condition or diagnosis. It's how your disability affects you.
If your anxiety is preventing you from being able to go out, mix with people, cope with social interaction, you may be entitled to Pip.
54% of pip applicants are turned down. The DWP are very dishonest. The private companies that do the assessments are looking to refuse you. They do lie on thier reports.
Get support from your local neighbourhood team, or from the CAB. There's a good website called 'benefits and work' and the scope chat forums have good advice on how to fill out pip forms, how to appeal a pip refusal etc.

You're right to say nobody gets pip for any diagnosis, but for the care needs that diagnosis generates. However, what makes you think a person suffering burn out has no care needs?

Autism IS a disability.

Yes. It literally is a disability

It is a disability under the Equality Act. Some autistic people don’t identify as disabled. I personally do, and I don’t feel that’s incompatible with viewing autism as a difference not a deficit. Many disabilities are differences imo.

pinkmushroom5 if your anxiety significantly impacts your ability to carry out the tasks specified in the PIP descriptors, you are eligible.

It doesn’t matter whether you, or I, or anyone else think someone SHOULD be eligible, PIP is a statutory entitlement, not a handout. What matters is legal eligibility, not personal opinion.

It's not 'self reported'
You needs lots of evidence from gp, mental health team, support agencies etc.

Both my daughters have autism.

One's able to live independently, can cook and shop for herself (although will always use self check-outs so she doesn't have to talk to anyone), can travel independently (although chose to walk everywhere when she moved to a new city as she didn't know what she needed to say to the bus driver) and needs our support for life admin. She finds things draining and hard, but manages.

The other loves to cook, but if something goes slightly wrong (water splashes when she puts pasta in the pan; top layer of cake starts slipping off) she will go into an autistic shut down and self-harm. She needs help to wash her hair because water on her face will send her into an autistic shut down and self-harm. She needs me to make appointments for her as she can't speak to anyone on the phone, and I have to accompany her to doctor's appointments as when they ask her why she's there she shuts down. She's fine getting the bus for a journey she knows, as long as nothing goes wrong. If it detours or terminates early she'll have a meltdown and has previously then gone to buy paracetamol and taken an overdose.

The first has never considered applying for PIP, the second is waiting to hear, but the assessor has recommended she's awarded both care and mobility components. The decision isn't made on the disability, it's on the impact on the individual's life.