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 a whole separate issue which is more specific to girls with ASD and the lack of knowledge in HCP and teachers still. Masking generally means that unless the girl has learning difficulties they don't get support until their MH deteriorates to a point where they can't mask. Boys generally get support because even mild struggles will usually present disruptively.
Hopefully over time schools will become more aware of watching for quiet girls.

The DLA side of things is an issue where I think more focus needs to be put on significantly disabled individuals though. There's lots of children who qualify for small amounts for just being harder work to parent with ASD or ADHD etc, but they're not actually impacting their parents ability to earn an income. Imo that money would be better placed increasing the financial support for parents where their children need 24/7 supervision and care and their ability to work or use childcare is very limited.

Sorry, I was not very clear in my post, but thank you for the replies. I was thinking maybe that they would look at removing the need for people with lifelong disabilities from needing to go through the stress of short term awards, that type of thing. Especially those who are just not going to ever improve etc. But I have never heard Labour mention anything along the lines of sorting out the PIP system. The amount of money being spent on assessing people, who, quite frankly will not see their condition improving, must be immense.

I disagree PIP or DLA should remain.
The questions should be easier to understand and the process more transparent. It takes a great deal of emotional effort to fill in the form.I have done it for my daughter and I found it exhausting and depressing acknowledging her difficulties and that she will never be independent. I sometimes feel that I should apply as I have severe RA.
I just can't face it!

I suppose like all things it is subjective and there will be a cut off in eligibility.

PIP or DLA is given for a huge variety of conditions and disabilities. PIP is there to help enhance the individual disabled persons life.
It could be to help buy a better wheelchair, get an adapted car, to buy chopped veggies, get a cleaner. Or even just to turn the heating up a bit or get a taxi.It could be used to help you access work or get tuition or a PA or to access clubs or socialise or just have a bit of fun.
With PIP you often eligible disability bus pass and buy a disabled rail pass.

It is sad that support services are being badly cut. Your community cafe idea is good idea an people could use their PIP to help access it.

The idea is good but not at the expense of everyone giving up their PIP.

PIP is really there to give a little bit of financial support to help with your daily life and should remain with the disabled individual on how to prioritise how they use it.

Yes this would be a really good start to reducing costs wouldn't it. I don't think that those who move into retirement age on PIP get re-assessed very often currently ( ? maybe every ten years) but it would certainly help to not keep assessing younger people with conditions that aren't going to improve. I am pretty sure labour have said they will continue with the proposals put forward by the conservatives to assist disabled people into work if they want to work.

@SplitFountainPen

I think @Lougle was saying something that runs deeper than 'masking'

Autistic people can and do change, their needs change.

I have a DS who has been through university (local so lived at home) yet he had a 1-1 and school transport for the majority of his primary years.

I also have a DD who didn't have the same level of support until much letter in primary school and now only leaves the house once a month or so, she is 13.

If either of these DC had been labelled with 'HFA' 'LFa' or a 'level' of autism, it would not be accurate now

I'm sure we could save a bit by scrapping f2f assessments. Hopefully then fewer people will need to appeal

We could also save a bit by giving people the right amount after assessment rather than forcing them down the mandatory reconsideration / tribunal route. Would love to know how much that costs, and most people who appeal succeed at tribunal.

I’ve literally just had a visit by the DWP to assess myself to become my DD’s appointee. One of the things he said was that it now means I can attend and speak on behalf of the claimant and that this tends to mean that the PIP and other claims are more successful because the assessment process it brutal on claimants with ASD/ADHD/other MH conditions. He also said that, as he had assessed that DD could not function independently and needed an appointee, it strengthens the case for being awarded PIP.

Can you ask a friend or relative to become your official appointee and reapply with their support?

Gosh 😔. It's a stupid system.

My DD is classically Autistic with associated learning difficulties. She attended special school. We did not apply for DLA until she was 16. She got a virus and went on to develop autoimmune disorders. She 5 weeks in hospital. I had put off applying for her DLA as everytime I looked at the form I felt I was falling into the abyss.
She was given Higher rate for care and lower for mobility. Her mobility is fairly ok but in a flare will not be able to walk for days. She is very vulnerable and not independent.
She has been awarded DLA indefinitely. So hopefully she will not need to be reassed. She wouldn't understand someone trying to access her on the phone. She would just scream 'Mum scam call!' and hang up. I am so glad most people phone me on the mobile now.

One of the things you can do when you are being assessed is ask what the assessors background is. If they are a mental health nurse and you have a mental health condition you are much more likely to be understood than if they are a chiropodist etc

So ask their background and tell them it's so you know how much detail about your condition to give

That is part of the problem when being assessed as well. The person doing the assessment may have not even heard of the condition that the person sitting in front of them has. The person may forget to mention difficulties during the assessment, or not get things across very well, and so on. It is a minefield.

Can you ask a friend or relative to become your official appointee and reapply with their support?
I don’t have a friend. I’m autistic, I’ve never had a friend. I have my DH (who works to support us both), my 80yo dad (who’s autistic himself) and my 82yo mum (who’s showing signs of dementia).

I had to go to the PIP assessment on my own because I had nobody to accompany me. It was awful and stressful but I had no choice, because DH couldn’t get time off work. Then I got penalised for going on my own.

@bluefell, sorry my reply was to that particular poster so I should have been clearer - however, could you appoint your DH?

The assessor for appointee-ship came to our home and arranged a time that was convenient for all of us? I didn’t have to take time off work or anything so it could be arranged with your husband’s availability in mind?

I’m not sure if this has been said already as I’ve only read your comments op. A lot of PIP claims are initially rejected, especially when you are doing it by yourself. A welfare and benefits advisor might be able to complete the form with you and support you to appeal. I did some training recently (though I still wouldn’t be confident to support someone in applying) where they have some pretty shocking statistics around how many claims are rejected, then upheld after appeal with the support of someone trained to fill these forms in. It’s all about the wording in the form, and giving info based on your worst days rather than good/average days. Try your local CAB and see if you can meet with a benefits specialist xxx

Same here.

Unless it varies between doctors i dont think they label HF anymore. Neither of our DC were labeled as a level, just as ASD despite one being non verbal with LD and one doing extremely well academically.

These changes over years should be catered for via EHCP reviews noting the changes in needs, and the DLA reapplications too.

However the category where this often fails is like the pp, where there are girls without LD who present as ok whilst their MH deteriorates.

The phrase ‘on your worst days’ was mentioned by the assessor we’ve just had.

I think there is a tendency to not want to seem as though you are after free money/greedy or to present yourself as disabled/inept because that is really crushing. So we tend to say, ‘most days I can do this’ when we need to say, on my bad days, which can be bad weeks/months, I am incapable of doing this in any way.

After 6m I am actually still waiting for the physical form for PIP, but if they finally send it, we can complete it with better knowledge now!

I think there is a tendency to not want to seem as though you are after free money/greedy or to present yourself as disabled/inept because that is really crushing
I think this is correct. But also they tend to phrase things in a way that defeats autistic people. The assessor asked “Can you do X?” and I said yes. I don’t do X because of my autism. But I can. Apparently I was supposed to explain that - but I’m autistic so I tend to just give the minimum factual response.

Ah yes that would trip me up.

For myd aughter i nearly ticked "yes" to the getting dressed category as yes, she physically can. It was when i read some notes somewhere i realised i could clarify that as actually she'd wear the wrong clothes for the season, not change clothes, has issues taking clothes off etc etc.

I think this is an issue. The assessor I met today said that those questions should really be phrased ‘on your worst day, can you do x’.

My DD is intellectually astonishing… but on most days cannot answer the phone [not even to a friend or me], travel alone on public transport to somewhere new [without going to bed afterwards for 36-48hrs to reset from the overload], and on her worst days she cannot get to sleep before 2am without pacing for hours and cannot, consequently get up in the morning before noon, she doesn't eat unless prompted or called for food. If she was asked ‘can you get up by 9am or cook a meal?’ she, too would say, well yes I can’ but the issue is that most of the time she really can’t. As an appointee, I’ve been told I can and must interject on her behalf and clarify this.

Just going to add, I am ASD/ADHD too [clinicians observed and pointed it out during kids’ assessments and encouraged a formal diagnosis], as is my son. We both have our issues - migraine/anxiety - and in hindsight it has helped me understand the issues I had in the workplace before becoming a SAHM and going back to uni. But neither DS or I have ‘care’ needs, so wouldn’t qualify.

I think the issue is that autism is a spectrum, obviously, and some individuals’ experiences, presentation and challenges impact them in a way that means they do have care/support needs. So, on the one hand, yes, they qualify for PIP due to their autism but also, on the other hand, it’s not merely because they've been diagnosed with autism. [Clear as mud… sorry!]

She had no assessment

Everyone has an assessment. Some assessments are paper-based assessment, but it is still an assessment.

I think this is an issue. The assessor I met today said that those questions should really be phrased ‘on your worst day, can you do x’.

pip is based on your average day. Not on the worst day which may be representative for a small amount of time (e.g. once a week instead of 5-6 days a week)

Am guessing his advice was based, then, on the fact that DDs worst days are also her ‘average’ days and that ‘good days’ are very rare and often singular!