aspergers and dla

[notactuallyme]

do most people with aspergers get dla? we claimed, as it was suggested we did, and just been told over the phone its a no. we didn't use the cerebra guide, and i felt that if you had you be coached how to answer the form maybe that was 'cheating'. he has mild to modertae hypermobility and i could justify what we would need to pay extra for due to his aspergers. (so wasn't thinking, great, free money!)
is it just one of those conditions and needs that doesn't count for dla?

i think i probably need to wait for the reasons and then address them by turn before providing any extra info. that's my plan.

I thought that Eliza but my DS1 gor dx with ASD Aspergers just a couple of weeks ago.

Someone suggested to me that it was worth asking a friend to write a diary for their NT child over the same period as me and then compare notes about how much extra help DS had.

That's a brilliant idea - i have a close friend i can ask. Just feel a bit daft now for some of my reasoning as he still can't swim and i was hoping to pay for some 1-1 lessons this Summer - spent loads on group ones originally and then gave up.

My son, at age 11 and bright ( not genius but good vocab/reader) would take an hour to dress himself if I left him to it. He'd then have either just his undies on and a smile..... Or be dressed but trews on back to front, no socks, wet arms up to the elbow of his school jumper cause his OCD makes him wash, thoroughly, every five mins.

At age 11, he should be able to attend to washing dressing, without me assisting him EVERY STEP OF THE WAY.

Stuff like that!

yep - think we didn't think outside the box enough, and we have a tendency to find it hard to do anything but underplay his issues. Just chatting to my mum who has suggested helping with the appeal.
For example, he needs his food cut up still as his fingers hurt - dh doesn't see this as he works late so didn't think we should put it down. But this affects meal times. He can cut his food up; he finds it hard to sustain this. He also hates being near certain types of food and textures - i think we mentioned this in passing.

Nightmare. Should have asked mumsnet before i filled the form out.

It was all the good advice on this board that made me decide to apply. Ds has numerous AS traits but no dx and our application was approved at the first attempt. As others have said reading the Cerebra guide is a must. It helped me to see all the things we do for him that we don't really think about e.g time settling him at night, reminding him to have a shower and brush teeth, not being able to let him go around the corner on his own like other children his age. He has behavioural difficulties and it helped that he has a statement with a high number of hours and only attends school on a reduced time table at the moment. Does your ds receive help at school?

yes, i sent copies of the ieps, ; i think its so hard having to talk about this stuff to medical professionals and to school that i found it hard to want to do the form anyway, and i just didn't want to get the diagnosis and then be seen to apply for money, hence saying no to contacting people (i did say to contact me if this was an issue). there's loads of reasons i guess - put off by some of the forums talking about what they used dla for; dh underplaying stuff; not wanting to portray him as worse than he is, so being cautious, etc etc etc.
thanks everyone - its all useful, and i can only appeal.

Was that with the reconsideration? Mum says to get it right now, so will dig out everything.

had a quick look at the photocopied form we sent in - seems we missed several questions - didn't put about difficulties getting up for some reason. Can i answer them as part of the reconsideration and say we missed them first time?
also need to get out all of the medical letters.
its so frustrating and arbitrary that we all have to answer the same questions when pretty much the issues will be similar and the care needs too. surely there should be a better system than this?

Oh okay thanks . Gone into pissed off mode now! Should have actually looked at more than the accompanying guide as there aren't spaces or questions about some of the needs.

But.... You can appeal.

On my recent "no" I phoned them and appealed over the phone. Within 4 days, the "YES" had arrived, in writing. Backdated.

You will need to complete another form, talk about the absolute worst it is, you can add additional notes on A4 (I did. About 3 sides, I think). Take advice from Parent Partnership who may send someone to assist you with filling in the form. I think an organisation called ABLE helped me, the very first time 6 yrs ago.

Don't give in to the first "no". There will be many of those in the years ahead!

DS1 has aspergers and gets MRC and LRM. I used the cerebra guide to fill in the forms. It is just a guide to what the people reading the forms are looking for, it gives examples that you can use for answers, which are very helpful as a starting point. They aren't a verbatim 'copy this' to get DLA. There were things they mentioned that I hadn't even considered as being 'unusual' about DS as I am just so used to living with him and helping him out. But once I knew what they were looking for, it made it easier to realise all the other things that were different about DS. Filling in the forms were probably the first time that I realised just how different DS is from an NT child and his dx really hit home. I was also 'pleasantly surprised' for want of a better term as to just how much the school wrote about his odditites on the form, given that prior to dx they had just thought him a sensitive child, rather than having AS. Again, there were things that they wrote about when comparing him to other children in the class that I had just assumed all children do .
Definitely appeal!

Thank you. Will reply properly when not doing crowd control with a houseful!

eliza - so did you fill the form in or do it over the phone? My mum has looked at the form briefly and pointed out loads of missing info - she wants me to photocopy it and red pen in the missing stuff. (equipment, needs, etc).
Thanks for the info about the school - i was so grateful to them for being helpful that i didn't want them to be 'bothered' again or look as if i just wanted to access money.
Examples of things that put me off looking too much for online help were just things like putting it in a high rate savings account or saving for stuff - i was wanting to do immediate things, so it just felt at odds with my intended purpose. absolutely no offence meant just why i didn't look at guides or forums too much.

I did both. Phone and in writing. To be honest, I couldn't add any more to my application so, said that on my phone. I found that they had not contacted my sons's psychiatrist for his OCD nor his behavioural therapist. I think when they looked at it in more detail, they admitted that being dragged out of bed 7 or 8 times a night ( bearing in mind he was still wide awake at 11pm and up for the day by 6am) to check electrical wires with him, they could see that, he needed additional help above and beyond the " norm" for a child of his age.

It's a long, drawn out process and it'll get more and more difficult due to cutbacks, in the future.

Okay thanks. I'm still waiting for the reasons, which will be my starting point. Having spent yesterday morning standing outside the bathroom while he sobbed over a broken stick, I am more determined than ever. There wasn't a question that asked about that.

No reasons yet, but I have drafted the beginning of a letter which has points about why i am adding/changing stuff: things like first time i'd applied for any benefits, found form daunting, questions didn't easily lend themselves to ds' needs etc and i am going to photocopy my original form and add in the missing bits/ change/ expand bits.
also kept a diary since yesterday - more a log of stuff.
it's not a very asd friendly form really.
thanks for all the support - i shall update as and when.

When I tried to ask them to reconsider on the phone they didn't seem willing to even discuss so in the end I put it all in a formal appeal. Only then 11 weeks later did they agree. You have nothing to lose.

Okay thanks. I'd rather send stuff I think, esp as I can back myself if it goes to appeal. 11 weeks!

I've had the letter now, ten days after it was posted, i've photocopied everything, and the letter is just a standard one - nothing to address beyond the maths (def put more than an hour per day).

going to request reconsideration by letter.

fingets crossed.

My sister applied for her dd and was turned down. She got a really helpful man on the phone who advised her to write in but to also request to speak to the decision maker as he said it helps loads and makes you a real person rather than just a name. She did and they did ring. She submitted no further evidence and they changed the award to HRC! Good luck x