Should I apply for DLA for ‘high functioning’ autistic DS?

[SpinningTops]

‘High functioning’ in ‘ ‘ because I know it’s not a term that is used but is the reason behind my question. My son is very capable in so many ways but does have difficulties.

DS (6) is probably autistic but due to long waiting list is a long way off being assessed. We’re 1 year into a 2 (more likely 3) year wait.

His main difficulties are

1. meltdowns - happen probably every day or every other day ranging from 20 minutes to an hour. During this he will throw things and scream.
2. very difficult to take out alone as will have meltdowns in shops which usually requires him to be carried back to the car which I can’t do alone.
3. he can find uncertainty difficult so we use visual timetables etc.
4. Can be very difficult to transition between activities.

His ‘worst day’ could be written down as pretty dreadful but his best days he can be a delight.

My hesitation comes from

1. He’s mostly ‘fine in school’. A very clever boy who enjoys school and goes willingly - I don’t know who would support the application.
2. We have enough money to pay for any extra things out of savings
3. I don’t know what we’d spend the money on - some kind of therapy to help manage meltdowns? Sensory aids?
4. He’s probably not much different to a neurotypical but difficult child.

I don’t even know whether he would be awarded anything but I don’t know whether it’s selfish not to apply as if we did get some extra money we would use it solely for him.

I think it would be difficult at the moment because he hasn’t actually been diagnosed as autistic.

Yes. Call up for a claim form as any award will be backdated to the date of the call. Go through the form and just see what happens. DLA is about any extra needs or difficulties he may have compared to his peers.

You don’t need a diagnosis to claim DLA.

Have a look at the form and think about the questions they ask as they are about specific care things like eating and washing and mobility and think how you would honestly answer them.

They actually suggest you keep a diary for a couple of weeks to help you fill out the form and give an example.

There are useful guides like cerebra that can help you think about the questions.

Yes, when we stopped and added up how much extra time we were spending doing things for him over and above a typical child his age we realised it was worth doing. You don't have to justify what you spend it on, your time is valuable, you could be working longer hours possibly if he didn't need the care he does. I can't remember the exact criteria now because it was quite a long time ago but we used the guide from the charity Cerebra.

If he has been referred, this is evidence that he needs more support.

A diary is a good idea. Might help us decide whether it’s justified or not.

Yes. I would at least try. Teen DD receives it after support from the early help team. I poo-pooed the idea as I didn't think she was "bad" enough so they completed part of the form. She doesn't have a diagnosis either. I think it was boiled frog syndrome tbh, I hadn't realised how awful things looked to outsiders.

The money has helped balance things out. I don't worry financially when having to buy endless options of food or clothes that meet her sensory needs. It's replaced breakages without any more stress for me. It also means I've had more money for day to day budgeting.

There are loads of examples on line of a structure.

You might be really surprised how much support you are giving as it's very common to normalise what you are doing.

We had a behaviour support specialist ask us to describe tooth brushing and they really showed us how we had normalised a bit of ordeal.

Yes, I guess things just get incrementally harder and you don’t notice how much extra time things take.

Good to know you can spend as you wish. I half wondered about using it to give some support in some way to his sister who is always having to compromise and leave places early because of meltdowns.

I guess worst case scenario is they say no but from what I’ve seen that’s almost the default position so difficult to know whether a no because it’s a genuine no or because they’re trying to delay / put people off.

Definitely check it out.

What we found is that therapy is great to help with them learning to navigate their lives. But also for you as a family to make it work.

DD (diagnosed at 16 but in therapy since 15) was lucky that my work health insurance paid for therapy for nearly one year and the full dianosis. Sessions are £100/hour and while we can afford for ongoing ones, it is worth looking for help.

Obviously therapy for a teen is different than a primary school child but things can be done. And the family part was vital to understand what works and what doesn't and how our family life was affected and how we managed to keep it together.

Sensory - yes, yes yes if it works for him. It can be toys, things for his room like lights, a hammock, different chair.

Is he able to cope with childcare? Do you need childcare for school holidays? SEN groups are normally smaller and therefore more expensive.

Yes, apply! I've spent today trying to fill out the form for my son who has continence issues that he's had for years - i first looked into applying 2 years ago but then never did as i kept wondering if things were "bad" enough, i wish I'd done it then as things have in no way improved and i could have been claiming all this time and using the money for things that would help.

I put it off for years too thinking he wasn’t that bad, but when I actually did it it turned out to be fairly straightforward and it was awarded with no problems, I wished I’d done it years earlier.

You don't need to be diagnosed to claim for your child. It's worth claiming as it can help him with access to other things.

It’s true you don’t need a Dx to claim, but without one, DWP are likely to dispute whether his needs are much different from other 6 year olds.

Personally, I’d wait and collect evidence.

Nope, not the case at all. DLA is very upfront at saying you don’t need a diagnosis - it is literally all about care needs. You write in the form the areas of struggles, what the child does, what you have to do, what happens in certain situations - DWP work out if that’s all above and beyond others their age. There will be GP records, school records, personal references to go on too.

This is interesting as my 11yo dd is autistic but ‘high functioning’ (sorry hate that term but it’s probably the most suitable way to describe her), and I’ve always poo-pooed the idea too. But I’ve never really thought about the endless clothing and food options we have to try etc. I guess it becomes normalised to us after so many years. Maybe I should apply for her.

All very helpful. Thanks.

Our diary started with him taking an hour to get back to bed last night because he became fixated on finding a toy no one had seen for weeks.

I guess it is the case that this is just our normal but is different to his peers.

That’s exactly it. We become so used to our ‘normal’ that we forget it’s really not normal/typical at all.

Yes, it's the extra time they need that eats into your day, and theirs.
IIRC part of the DLA claim was the hours I had to spend a week dealing with meltdowns and even just having breakfast and organised for the day.

One recent situation was that I had to get DD to the theatre (gcse purposes) and realised she'd not cope with the "wrong" seats or a crammed train. But the DLA meant I could afford the right end of row seats and 1st class train fare, total game changers for her.

You basically have to demonstrate that a child needs significantly more care than a child of the same age without a disability (the benchmark is at least an hour a day additional care).

As a PP says, you don't need a diagnosis, but you do need evidence, ideally from either a medical or educational professional.

We were awarded DLA before DD got her ASD and ADHD diagnosis - our evidence was a report from the initial paediatrician appointment DD had before she was put on the ASD pathway and a report from a sensory OT assessment.

Yes, you don't always realise the time you spend is over and above normal, especially if they are your oldest or only child. In our case it was things like extra help dressing, extra time shopping and cooking specific foods, extra time spent researching conditions and support (including EHCP application), extra time spent supporting learning to read and handwriting, extra time going to appointments, extra time going to distant disability sports clubs instead of local mainstream ones, it all adds up. I can't remember exactly which of the above fell into the criteria but it was enough.

OP, you might find it useful to check out Sibs, who have a range of support for children like your daughter www.sibs.org.uk/

Yes I know how the claim process works, but you wouldn’t believe the high proportion of child DLA claims that are refused or low-ball awarded with the assertion that “all X year olds need supervision with Y”. Quite a large proportion of parents then can’t immediately face appealing.

It is the catch all for child DLA refusals. For adult PIP claims the common refusal reason is that the claimant is in work, so can’t be all that hampered by their disability. It’s frequent and nonsensical.

So if you want first-time success, the best bet is to accrue some third party paperwork, even if it falls short of a diagnosis.

Hi
can I ask a question about an application to renew a claim for DLA?

I can send in the current EHCP but all our diagnosis reports etc were sent to DLA when I first claimed. Do I need to resend old reports or will they just want new/current reports?

Thanks!