Autism and DLA, a question please?

[benfmsmum]

Hi, I am trying to complete the DLA application form for my ds. He is 3.4. My dp and I are in disagreement as to what to put when the question asks how long does the child need help/encouragement etc. For example Childs Development - how many times a day does the child need help and how long does each time take? Well, imo he is autistic for 24 hours a day 7 days a week - so how do you give the answer - He needs help once a day for 24 hours at a time?? To me this sounds flippant but it is true!! My dp says that we should put down a number of times a day but can't actually answer how many times a day he needs help as it is all the time!! I just wanted to know how other parents dealt with this?

I suspect you get extra marks for quantity. If you need to help a child x number of times per hour during the day and sort him out x number of times overnight, I'd give them every possible detail even if you have to list a typical day out on a separate attached sheet.

Ah, now a diary of a typical day would be a very good idea!! Thanks Amber!

Spare them no detail. Every item put back in place, every bit of clothing reattached, every emergency dash across the room, the lot.

Could be a long attachment!! But you are right, they don't know him so its up to us to describe him I suppose!

Thanks busy! I'll check out their website. I have spoken to the NAS and they were helpful to an extent. I had my idea of what they were telling me but dp had his and they weren't the same!! Am trying to complete the form online and ds is here too stopping me every few minutes for something or other!! I think I will try again after he's gone to bed!!

For all the time elements I put either 24/7 or all the time. We got middle rate first time of applying.

Thanks both of you!! We've been bad and put it off for ages but we really ought to do it for ds sake. Roughtly how long did it take you to hear back from them once you'd submitted the form?

in several sections I put things like

"between 10 and 100 times per day"
and in the time thing I put
" between 2 and 60 minutes"

When you do the form photocopy it and keep it just in case. I was reassessd 3 times in two years . It was probably because DS2 was so young but it was bloody upsetting. Whilst you cannot send in a photocopy it saves hours of agony starting from scratch. I was able just to read through and copy just amending where he had improved ot where things had become more difficult.

I put 'varies' a lot, then wrote loads and loads and loads in the additional info bit (and attached another sheet) giving example after example after example of things they'd done, or times I'd had to do something and problems we'd had.

And I finished off by saying that it was hard to demonstrate exactly how things are and I thought they should send someone round to assess them.

They didn't send anyone, and they both got higher rate. I may have scared them a bit.

Thank you all for your advice, it is much appreciated!! I don't feel as bad now putting 24/7 etc as it is the truth after all!! We will add a diary at the end to help explain why we've put that. I'm attempting it online as we speak!!

Busy: was the mobility bit separate to the DLA form? I don't think that my ds will be eligible (sp?) for any pay out as he is physically able to walk, but a blue parking badge would be great as he has refusal epsodes of walking or runs off without any fear of danger - he loves cars and could just follow one at a whim and so parking closer to shops etc would be very welcome!!

benfmsmum, my dd4 gets high rate both parts,the mobility and the care part... she can walk- but refuses and has meltdowns so has to be transported in a buggy or car. if she does manage to walk its a nightmare as she ends up getting carried as she throws herself down and kicks off.(she doesnt cre if its the middle of a road and traffic are oncoming!think you need both parts high rate to get blue badge?- am not sure and havent applied for one for dd4 yet

Thanks Dr and Busy - I think I've got it sorted in my head now!! I suppose I just have to do the best I can on the form, include everything I can get down on paper and then see what happens!! Hard being negative about my ds though, nature tells me to be positive and he is doing so well - for him!!

essental kit for doing dla forms should include - very large box of tissues, cause guarenteed you too will end up in tears. and a very large glass of something for after its done to calm you .chocolate is good( need to keep the energy up, and a very comfy cushion to sit on. dont do what i did and sit at kitchen table on hard chair--- you'll lose all feeling in your legs and have a numb butt for weeks.....good luck with the form..xxx

If that's what the dr ordered then who am I to argue??!!

I gave up with the form at about 11pm last night and am only about a third of the way through!! I'll try to do a bit more when ds is in bed again tonight. And don't worry busy you aren't waffling, I'm using your key words!

It is true that you don't realise that some of the things that ds's do are because of the autism and not just part of their character or whatever, especially if, like me, you have no-one really to compare them to. I have done a couple of help seminars that the NAS have run which are very enlightening, and made me realise why certain situations cause certain behaviours in my ds. It is a learning curve for us parents too!!