To ask if you know anyone who has been diagnosed as an adult with autism

[Brocklady]

I am wondering if anyone can help and am using this board mainly for traffic (sorry)

My brother self referred himself (at my request, really) to an autism assessment team.

We seem to be waiting now for a formal assessment.

The difficulty is, and not wishing to sound too cynical, money. Without a diagnosis I am guessing we can't claim DLA or PIP for him.

Is there a way round this, that anybody knows?

Thank you.

Hi,
Not sure if this will be of use but I have known two adukts diagnosed by Occ Health via their workplace. Neither were happy with the label, neither wanted to tell their GP so I don't know if they would have been "formally diagnosed".
If your brother is working this could be a route.

Dla and pip are based on care needs not diagnosis. My friends son was diagnosed in his 20's.

My nephew received DLA prior to his diagnosis. In theory these benefits are based on need not diagnosis, although diagnosis will make it easier to identify those needs. Although in practise it's a nightmare for everyone regardless of diagnosis.

That's interesting.

It hasn't been claimed for before.

I was diagnosed as an adult, a few months ago. You can apply for PIP (not DLA as that is only for children and existing claimants now) even without a formal diagnosis, they will probably want drs reports so if he's been with related difficulties before (eg depression and anxiety) that will help, and they will almost definitely want a face to face meeting. If you have any specific questions feel free to pm me, or visit the Mumsnetters with SN board, there's quite a few of us over there.

Thank you.

Have looked online and it doesn't seem he's eligible for PIP, yet he really can't work.

This is so difficult.

The likelihood is that he will be eligible for PiP. Take a look at the Scope website, National Autistic Society website and Benefits and Work site, they'll all show you how to fill in the forms so that his differences and difficulties are understood.
I too was diagnosed as an adult, about 12 years ago. As was Dh. Dh was getting dla long before his official diagnosis.

On what basis would you claim?
I am a claimant myself for a physical illness, and have a teen dd waiting for assessment for ASD and honestly don't see what grounds she'd be eligible.

Genuine question btw in case that came across as snippy, I honestly didn't mean it to.

For autism, you're looking at getting a few points for communication and social interaction, plus a few extra points if he needs prompting to do self care (eg telling to shower, or helping to choose appropriate clothing). He might also get some points under mobility if he is too anxious to travel alone.

Also pip is not designed as income replacement for people who can't work, it's a 'top up' to help with the extra costs of having a disability or to pay for appropriate help (eg needing to take a familiar adult out and about with you) it's also a passport benefit meaning that if you are eligible for pip you can get things like free carers' tickets.

The income replacement benefit for people who are too sick or disabled to work is ESA, so you could google that and see what the requirements are.

X post with Brillo!

I get DLA for ASD and MH issues (highest rate care and low rate mobility) and I have a DS with autism who gets DLA too (same rates). We both have high care needs due to needing supervision at night, high levels of anxiety, low motivation for self-care, dressing and preparing meals, food issues, prompting to take our meds, confusion with budgeting, confusion and anxiety when travelling to places, and communication problems.

Some people with ASD are quite high functioning and wouldn't get DLA or PIP, it's all about care needs and not about diagnosis.

Thank you very much.

Brillo, essentially, he can't work. Believe me, we have tried but while he can get jobs he just can't keep them.

Jobseekers isn't designed for long term claiming of course so we do need to look at other options.

I have aspergers (yes diagnosed as an adult) and on indefinant DLA will be one of the last to move over to PIP. i originally got DLA before I was diagnosed years and years ago, then appealed against the decision not to renew it again pre diagnosis. This time only by months.

I was awarded lower rate mobility, because although I'm physically mobile, I have social anxiety associated with the ASD, I can't travel without a care worker or an accompanying adult unless it's a route I know very very well.

I get medium rate care, as I need an amount of support at home, managing money/food/medication. Your DD might have similar issues brillohair

I'll look into ESA - thank you.

This is so hard

My DS has no diagnosis as yet though waiting for ASD assessment. He gets middle rate care and low rate mobility. It's assessed on needs not diagnosis. Every day is hell for us because he needs so much support even though he would probably be considered high functioning. The DLA goes towards all the extra things I have to buy to support him.

But it's entirely possible to have an ASD diagnosis and not need DLA I suppose. It won't be an automatic entitlement.

Cross posted with just about both chronically and hills that's exactly what I get My DLA for.

If he can't work he should be on ESA not jobseekers.

It's very hard as he is always doing things that appear stupid, irritating or bizarre and workplaces lose patience.

Sounds like he might be eligible for ESA under 'following instructions', 'appropriateness of behaviour' and 'social interaction'

I would post a link but my phone won't let me paste for some reason!

Yes ... That sounds like my brother!

Here you go: www.sense.org.uk/content/esa-descriptors-determine-whether-you-have-limited-capability-work

You want to look at part 2, he needs 15 points total for an award of ESA

He can get ESA and PIP on top of that. ESA is for living costs/to replace wages while PIP is for the extra costs of disability. It would be tough to just manage on an ESA income on its own.

So sorry if I came across badly, I didn't mean to, I'm just genuinely curious, because I do claim it myself and can't see how it would fit with dd, though of course her working is not an issue at the moment.
Actually I have my tribunal tomorrow to get my care back, they took it all away and I'm really worried.

I wasn't offended Brillo - to be honest, for a long time I didn't see how he 'fit' either but sadly and with some sense of finality I am realising he just is unable to work. I hope your tribunal goes well and that you get the outcome you want.

Thank you for all your help and support. I'll update :) and do throw any more useful pieces this way as I'm floundering through in the dark somewhat.