I am filling in the DLA form for DS, who has ASD - any help or advice appreciated!

[SammyK]

Aargh!

This is not going to be easy.

I have the cerebra help book, and NAS site open on another tab, but if anyone can help me thorugh this that would be great.

Info:
DS has seen paediatrician, who has confirmed he is on the spectrum most likely aspergers, and we have been referred to get him assessed and officially diagnosed. He is also working with SALT, in school, and waiting for a social communication SALT too.

Has anyone else done the form before having the official DX?

I have missed the deadline to get bak payments, as have had so much else going on, but still if I can get it sent off and we can get a little help that would be great, and I can maybe cut my hours slightly.

sorry carnt help only got ds form yesterday hes dx for AS where did you get cerebra help book, from? did you have to pay?

Hi a kind MN'er recommended it, and if you are filling in the form like me I would get it, it's free from the cerebra website to download, or by post. It's called 'claiming disability allowance for children under sixteen with brain related conditions.'

HTH

trace2 this link is useful too.

Anyone around who has done the form??

The thing I was told to do was to make sure you emphasise what you have to do for your child above what would be normal for a child of that age. You need to show that you are using up more time, energy and maybe expense on things that you wouldn't need to do if your child wasn't disabled. Try to be specific and give number of times and the amount of time. So for example if you have to get up in the night for a 6 year old, you might say " I have to get up with X seven times a night, each time can last upto 15min. Most neurotypical 6 year olds sleep through the night." Keep a record of what you wrote so if they check you are consistent with your timings etc (since it can be difficult to calculate exactly how long you spend doing something.) I also attached a single sheet with a diary of Ds2's day where I highlighted all the parts that were above the level of care needed for his age group usually.

e.g. 8am - breakfast - Ds2 can use a spoon but he needs some help. He is very messy afterwards and needs cleaning up and a change of clothes.

Somewhere I have a link explaining all this better - I will see if I can find it.

Sammyk As above emphasize everything and if you have to get up 2-3 times a night put down3-4 as they will look at the lowest number and assume that is the true amount. IYSWIM.
Also when it askes why you need this help always put because child has an asd, put his name instead of child obviously.
SALT if he is at school say that he is getting help everyday even if he only sees the salt once a week as his teachers and you will be implementing what thjey are showing you.
Tell them specific problems to highlight your case. I told them my ds had no understanding of danger and told them about the time he wandered off over a mile away on to a busy road next to a huge roundabout and docks entrance whilst wearing only a nappy and t-shirt riding a scooter.
Finally photocopy everthing page by page. If the person reading your claim doesn't really understand asd then they might just reject it. They can reject them as a matter of course if they have a backload.
Good luck, I have filled in 3 and unfortunately they don't get any easier. The good news is after the third one they get it until they are 16 so you have a bit of relief.

The link I had was bhas and it's no longer active but I've just found a mumsnet thread that says the cerebra guide is almost the same so I've learned something for when I next need to do that horrid form.

Oh and if the paed has diagnosed him then that is enough for an official diagnosis

DS3 got his pre dx and on second application until 16- phew!

I agree about emphasising exactly what you do. Nots ure i'd ut 3-4 if I emant 3 you have to learn a trick of being entirely honest whilst in no way being modest or dimnishing what you do, be exact. £ is 3, not 'a couple' or 'a few' times a night.

Keep photocopies. Don't be downhearted if it is rejected, just appeal. DS3's first application went from refused to high after one letter!.

Thanks everyone, this all helps, I have just phoned peadiatrician's secretary, and she is sending me a letter out of his summary and findings from our last appointment.

It's so hard focussing on all of the tings he struggles with.

With mine I use the following structure:

"Ds needs help with [activity].

He needs someone to [what help he needs].

A normal child of [ds' age] is able to do [activity] without needing to be helped.

Without this help ds would [description of what would happen, eg the danger, ds unable to go out etc."

If you need some more specific ideas about what to write then ask away. My two both have AS/ASD and so far I've had to do 2 DLA forms for each of them (original application and a renewal).

It's horrible to do, and yes, it is very depressing. I had to do mine in two long sessions with dh and with a glass of wine in hand. FElt awful afterwards so you are not alone. What I did with my ds (ASD/Dyspraxia) aged seven, was start every sentence with 'because of his Aspergers' or 'because of his dyspraxia'. I was very repetitive, but that helped show the problems he has I think. So I'd write, because of his Aspergers and dsypraxia ds cannot dress himself. He has very poor coordination and is very inattentive so needs constant encouragement, constant prompting and physical guidanace to put on any item of clothing correctly. Someone needs to be with him constantly. Most children of his age can dress himself. Because of his dyspraxia he cannot feed himself without a great deal of mess and will require changing afterwards. etc

I still haven't done this form, and have an unexpected morning off so thought I would try again

Sammy, Ive been using this www.asd-forum.org.uk/forum/index.php?showtopic=119

further on down the page, someone has put what to put, really good and makes you think of things I wouldnt have thougth of. Also using the Cerebra aswell.

I got some help from the money advisor attached to the disability team. Took a while to get an appointment. She thought of lots of things I had completely overlooked ( ds has Ld and autism) like stating his IQ ( if it is below 55) stating the staff to student ration at his sen school, examples of refusal to walk (if applicable) and the restrictions that causes, the support ds needs to do clubs or ms things like swimming lessons (1:1 required in water+ extra adult to communicate, dressing,etc). Ds is our normal so it is hard to compare with average typical childrn.

thanks alfiemama and magso

that link is good have about 5 differetn tabs open now

you are so right, I only have ds so how he is is just him, it's normal to us which makes it harder to list all the things his friends do with ease.