DLA and aspergers

[lemonstartree]

My ds1 who is 10 has just been diagnosed with aspergers, and it was suggested that we look into claiming DLA for him.

I am wondering if his problems are sever enough for that, and would be really grateful if someone could give me an idea about what 'difficulties' you can claim for ?

thanks so much. I am a bit at sea with all this and am very grateful for a pointer or two !

[magso]

There is a very helpful section on the NAS website www.nas.org.uk highlighting the points you may need to consider. Can't find the guidance sheet but perhaps someone else can! When I first heard of DLA I thought ds would not qualify because Ds (9 asd m/sld adhd) has no major physical disability but the award recognises the extra time required to care for your child (over and above an average 10 year old) and that includes things like time taken to reassure, encourage, support. The form is rather daunting!

[sadnog]

Hi lemonstartree, yes you definately should apply. I applied for DD, who has learning difficulties and no diagnosis as such, after her SenCo mentioned it. After reading form and completing it (it is very daunting, but don't let that put you off) I never thought in a million years I would get anything but was awarded middle rate care and low rate mobility. What you have to get across is that your DS needs more care/time/attention than a NT child of the same age. Good Luck

[lemonstartree]

thank you so much, i will loom at the website. He definitely does need a lot more input than another 10 year old, in fact more than 6 year old ds2. does it include thimgs like helping him collect lost property ( very poor short term memory so he loses and forgets everything!), or help with school work - he also has moderate dyslexia and requires enormous support to do any home work ( mostly because of his poor short term memory rather than the dyslexia I think); help getting dressed ( cant do laces/buttons etc)

[sadnog]

Yes, put everything down, even if you feel it may be insignificant. The more information you can give them the better. Someone said on another thread regarding DLA that you should think about your worst days and base your answers on that. With my DD it is mainly her lack of understanding dangers (she has no road sense whatsoever) and when in unfamiliar surroundings she has an amazing ability to just wander off!! Have to watch her like a hawk! Anything you do for DS, which you feel you would normally have to for any other child of his age, put down.

[sadnog]

Sorry, meant to say "would NOT normally do for any other child his age"

[PeachyBAHonsPRSCertOnRequest]

DLA isn't dx based: it's need assessed.

DS1 unusually gets higher rate for AS but that's because he has a few severe behaviours that require 24 / 7 supervision.

Well worth applying and don't worry about what difficultires- the form will guide you (througyh every second of the last 6 months FFS)

You need the cerebra website guide; even the NAS suggest using that.

[bubblagirl]

when you fill the forms in write them on your worst day scinario and dont put anything positive down also make reference sto why his needs are different to anoyther child his age like another child of 10 would understand to wait ata road ds would run straight into it with nop danger awareness etc

does he sleep well are you up for more than 20 mins 3-4 times a night if so then put that down when asking time of care put ongoing all the time

its all about how your childs needs differ to another child of that age to how its based

its always worth applying for as if you do get it you can spend it on therapies for ds or educational toys he may want etc

[magso]

Thanks peachy!! Its the Cerebra guide -that is why I could not find the link on the NAS website OOPS!! www.cerebra.org.uk/parent_support/DLA_guide.htm

[bsac15]

Hi - Ive got a DLA form to fill in too.
I can't see how we qualify but a couple of friends have pointed me in the right direction on how to word my DD care.

Bubblagirl - you mention "when you fill the forms in write them on your worst day scinario " and "does he sleep well are you up for more than 20 mins 3-4 times a night ".

Q. My DD is usually a good sleeper but once a week she wakes every hour for upto 20mins in the night (7pm til 6am).

As this only happens once (twice at the most) a week, should I really put this down?
I'm very concerned about 'fitting' the form to our advantage.

BSAC15

[magso]

I think you should be honest but not minimise or overlook things. Personally I kept a diary. HTH

[sophiesibylle]

Hi everyone,

I am currently filling out a DLA renewal pack, it does not get easier! I feel emotionally drained and finding the time to do it means I do not sleep much. Thank you for the cerebra website it definitly helps me keep a clear mind. My son has AS and so complex needs as is the case for everyone here I guess.Thank you again.

[Chickpeas]

Claim it.

So many people here were in the same boat as me. When you have lived day in day out with someone with AS you adapt to fit your lifestyle around them until it becomes 'normal' for you.

When I sat down and had to fill that form in I realised how 'abnormal' my son was compared to his peers.

They ask you about every minute of the day and night and when I had to analysethe time I spent helping my son to understand and complete everyday tasks I burst into tears.

I think that was when it really hit home that he was 'disabled' before that he was just eccentric.

I got awarded Higher rate care and lower mobility on first submission of the forms. I have a knack for these forms luckily.

I wish you all the best with your claim and if you need any help with the forms (they are long winded) just shout.

[sugarcandymountain]

If you have any reports, send them in with your form. They ask about specialists involved but they don't always contact them and sometimes just write to your GP and school. It's worth letting your GP and school know that you're applying and what kind of problems you have at home that they're not aware about.

[Marne]

Hi, dd1 (6) has mild AS, most of her problems are linked to Anxiety and routine, we get middle rate for her, i was really shocked when we got it as i thought we would be lucky to get anything. All i can say is 'compare your ds to a normal 10 year old and write down all the differences, all the times when you have to stop during the day to reasure/calm your son, the extra time it takes to make sure his routine is spot on and how upset (if he does get upset) when routine changes, make sure you tell them about any sleep problems (if he wakes in the night or if he takes a long time to settle).

Send them any reports, they will contact your ds's school and any doctors/peads that he see's.

[JillMLD]

Hi
I found this thread whilst googling for help filling out DLA, and wanted to say thankyou so much for pointing me to the Cerebra website, its fantastic ! My son has been recently (last week) diagnosed with Aspergers so we are feeling a bit shellshocked and lost. I dont want to hijack the thread, just to say thanks
Jill