PIP?

[Tarantellah]

I have autism and my son is waiting to be assessed. My autism support person at the GP has told me to apply for PIP. But this doesn’t seem correct to me because my difficulties aren’t covered by what the PIP assessment asks about?

The form asks can you cook a meal, take nutrition unaided, take your meds, get dressed, wash yourself and use the toilet, express and understand verbal and written info, manage your money, plan and follow journeys, move around physically, and engage with people face to face.

Yes, I can do all of those things. I’ve lived independently for the past 20 years. I drive a car. I have a masters degree. I don’t like engaging with people face to face but I’m capable of doing it. So I don’t understand why she’s told me to apply?

I asked her, and she said “because you find it hard to talk to people”. And I said “yes but finding it difficult and unpleasant and being mistreated by people because they find me weird, isn’t the same as being completely unable to deal with people at all. I am capable of talking to people - I just don’t like it and they hate me”.

And she said “also because you’re unemployed and nobody will hire you due to how you come across as weird and awkward”. And I said “but the form doesn’t ask about that. I’m capable of work, it’s just that no employer will let me do it”.

So basically I think she’s wrong to have told me to apply for PIP, because it’s for people who can’t function, and obviously I can. I was wondering if anyone else gets PIP for high functioning autism, and how, and why?

But do you struggle to do those things? Can you do them safely? Does it take you longer than someone else to complete those tasks? Do they leave you feeling tired, stressed, anxious or overwhelmed? It’s all important to the process

The form doesn’t ask if I feel stressed and unhappy about doing those things. It asks whether I can or not, and whether I can do them without support. To which the answer is yes - I have workarounds for things I find difficult and I manage on my own. I use alarms and calendars and lists, and I check everything out online in advance. So I am capable and independent, and therefore I can’t tick the boxes on the form. The form doesn’t ask about my real struggles, which are anxiety and loneliness and being discriminated against.

If this is any help , I was told to answer the questions, remembering how i am on my worst affected days. so in your case, what if you couldn't put in place those workarounds for any reason, could you still do those things?

No I couldn’t do stuff without my workarounds. But I do have my workarounds, so I can do those things. The form asks can you do those things unaided, yes or no. And I can. It doesn’t ask if I find them difficult or unpleasant. It asks if I “can”.

Just fill it in as best you can. Sorry I can't be of any further help, perhaps someone might be along soon to advise. Gold luck!

So basically I think she’s wrong to have told me to apply for PIP,

I don't think she is wrong to suggest applying. It is the case that you might not qualify because you 'manage' - however if you really dig down you might find that while you consider yourself to be managing you actually need considerable support to do so.

So I don’t understand why she’s told me to apply?

It's because she is not an expert on PIP and it's always worth mentioning. Don't be too hung up on 'she told me to' - it's something you can choose to do, or not.

This explains the 'reliability' criteria used to award points. It's not just whether you can do an activity, but if you can do it safely, reliably, repeatedly, does it cause you to feel worse etc
https://www.mypipassessment.co.uk/updates/what-are-the-reliability-criteria-that-are-used-during-the-pip-consultation/

The PIP process should take into account whether you are able to do these things to the same degree as a neurotypical person, as a PP said, safely, reliably, repeatedly and in a timely manner. "Support" doesn't necessarily mean support from another person, it can also mean reminders, alarms, or using something like Alexa when the vast majority of people wouldn't need to.

For example, Question 2 on the Daily Living section of the PIP form:

2. Taking nutrition.

a) Can take nutrition unaided. 0 points.

Needs –

b. i to use an aid or appliance to be able to take nutrition; or

ii. supervision to be able to take nutrition; or

iii. assistance to be able to cut up food. 2 points.

c. Needs a therapeutic source to be able to take nutrition. 2 points.

d. Needs prompting to be able to take nutrition. 4 points.

e. Needs assistance to be able to manage a therapeutic source to take nutrition. 6 points.

f. Cannot convey food and drink to their mouth and needs another person to do so. 10 points.

A possible answer from an autistic person might be:

I often need prompting from an alarm/ reminder to be able to take nutrition, as the effects of my autism (hyperfocus on other subjects and reliance on routine) mean I often forget to eat or drink for long periods. I am unable to do this alone reliably, in a timely fashion, repeatedly and safely. Last time this happened was yesterday, when I forgot to eat and drink for most of the day as I was disrupted from my usual routine, and became dizzy and weak as a result.

This should score 4 points as it meets the criteria for d) above.

Of course it is completely up to you whether you apply or not, and the process can sometimes be a long and stressful one. If you do, it would be well worth asking someone with experience in filling in these types of form as you may well qualify but are so used to your own coping mechanisms that you don't see them as "support"- maybe a local autism charity or CAB, or similar could help?

If you have any other conditions such as depression or anxiety that are common amongst autistic people, the effects of these are worth considering as well.

If you need a lot of downtime between tasks or experience autistic overload, these could also affect your ability to do things safely, reliably, repeatedly and in a timely manner.

maybe a local autism charity or CAB, or similar could help?

By this I mean they could help with filling in the forms if you decided to apply.

I'm also really sorry to hear about your other struggles- loneliness, anxiety and being discriminated against- it can be so difficult, can't it?