Anyone else have an ASD child but feels they can't justify applying for DLA?

[dietcokeandwine]

Someone asked me the other day about DLA for DS1 (7, ASD DX) and I explained I have never applied and for the moment don't intend to because I don't think we could ever get it so no point...her comment was basically along the lines of 'you will get DLA if he has an ASD DX'.

But that's not right is it? My understanding is that you have to prove that your child requires significantly more care than an NT child of the same age?

DS most definitely has his issues and quirks and, particularly when you see him amongst his peers at school, it's clear he's not NT (really struggles with listening/concentration, has some auditory processing difficulties, doesn't 'get' jokes, finds social interaction difficult, presents as quite immature for his age, some mild stimming etc etc). He receives excellent support for these difficulties at school and is progressing well.

But in terms of our care of him, outside of the demands of school, I don't think he is much different to an NT child his age. He eats well, sleeps well, has good safety awareness, no challenging behavioural issues, isn't prone to meltdowns, goes happily to parties, after school clubs etc. Admittedly he can occasionally get a bit boisterous with DS2 (but responds quickly when told to calm down);I probably do more in the way of talking to DS to prepare him for events that are going to happen, and I'm sure I "manage" playdates rather more closely than NT parents probably do. But that is about the sum of the additional 'effort' his ASD requires of us, as his parents (I am acutely aware, btw, that we are very very lucky in this regard)

But I really, really don't see how we could possibly get DLA for him, I don't think we could even justify an application.

My friend is equally adamant that we would and could.

Who's right? Would be very interested to hear people's thoughts.

we have recently applied successfully for dla for now 10yo ds1 - when he was a much less challenging 7yo I would have said what you're saying. And yes, on the form you have to keep pointing out how much your child needs more care or supervision than a NT child of their age (which can be quite upsetting, tbh). At 10 it's a whole different ball-game : his mates are taking themselves to cubs and stuff on their bikes, go to the shop, have road sense, but he can't do any of those; they don't need to still be supervised when playing because they're likely to do something stupid or dangerous - but ds1 does. If your sense of reason and logic says not to apply now then don't - but keep your mind open as these things alter as other children get increasingly independent and ours might not do it at the same speed.

You've already dismissed most of the reasons I have for claiming DLA, tbh. Does he have age appropriate road sense, stranger danger understanding etc? Is he at all naive? Does he have any motor difficulties, sensory issues that might mean more help is required than someone of his age with toileting, eating, dressing etc. Does he get anxious much, tho' if after school clubs etc are no problem, maybe not? Do you have extra costs because of his ASD? Medication, 1:1 swimming lessons, specialist after school clubs?

Being honest, you may get LRC but you'd have to think quite hard when filling out the form. I'm sure there are websites which help. I'll have a google!

Cerebra have a good guide. Perhaps look at that and see if anything applies. Also I crossed posts with MrsShrek and she makes a good point that differences in behaviour can widen with age, unfortunately.

I could have applied for DLA when my son was 2 years old but at that time felt it wasn't justified as like you he didn't seem that bad.

He got a lot worse as he got older so I picked the forms up and found it so hard to fill them in (it's heartbreaking having to write page after page of your child's faults) that I ended up shoving it in a drawer until a year later.

Only a few months ago did I actually apply and was accepted. The reason I applied was because my son was at the age that he needed extra equipment to cope with his needs and that was costing money.

DLA is supposed to be to help towards the extra costs involved in raising a SEN child so in my opinion you should only apply for it if you do have extra costs due to your child's SEN. Others will see if differently however.

I do suggest you read the Cerebra guide however as there may be so many things you havn't thought of. I didn't realise how different my son was from other children until reading that guide, a lot of his issues had started to seem normal as I suspect they have for you.

Don't forget that just because you don't apply for it now dosn't mean you can never apply for it. If you don't feel you need it or his issues don't warrant it than perhaps re-assess in a year's time and see if you still feel the same.

You do have to send evidence of your child's problems, or have someone confirm them so if you feel that he has no issues at home you may find it hard to get anyway, unless others don't agree. A diagnosis dosn't automatically grant it to you and many parents of severely disabled children have been turned down for stupid reasons before now.

I would agree with the other posters re watch and wait - the gap often widens as AS children get older.

I have a DS with AS and I haven't applied for it either. Although he does require supervision and consideration of his different needs, it isn't something that can be solved by extra money, at least not at the moment. He is 10 btw.

I think if you don't feel you need it, if his differences are not causing you additional expenditure then it would be wrong to claim it so I think you are right.

I got into an email altercation with a woman I had never met from a local ASD parenting support group just after DS was dxed (he was 5) about just this sort of thing. She made it sound like I was a bad parent for not applying and also letting the side down for other ASD parents. I don't see this at all. DS doesn't need anything and surely especially in this difficult financial times it doesn't help anybody to take funds away from people who really need it. Needless to say I never joined the group which is a shame - I just didn't need to be told that I was a bad parent at that time.

That is most certainly NOT to say that either of us shouldn't apply for DLA at some point but I don't think it be something you have to do just because of a dx.

Well, You could say that the DLA is not money for you, or even money as expenditure for extra parenting, is money for expenditure for extra costs. Ds1 has cost me my job!

I only applied in Jan this year as DS's problems at school meant I had to take a second sudden long term career break in 3 years. At the moment it partly compensates lost wages, (DS needs a special diet so DLA literally ensures he eats properly right now), but I'm also finding that the NHS doesn't cover the therapy equipment DS needs.

One of the key reasons I applied is that my job centre advisor told me that otherwise I'd have to make myself available for work or "training"- an impossibility right now, much as I hate it. This year has been chock full of meetings and appointments - no employer would tolerate the sheer volume we've had to endure. Also DS hasn't been in school for months.

DS recieving dla takes the pressure off me on that front which is more important than it sounds as right now I don't want to deal with any additional silly buearacratic pressures or form filling (statement only recently issued but needing a tribunal). It also means I'll be able to apply to access disabled loos, as DS is not competent to be trusted in the adult mens alone yet which is an unexpected non-monetary bonus that makes all the difference to being able to go shopping etc.

There are two issues here aren't there - whether you could apply for it and whether you should (or need to).

Can I ask, as somebody who has never applied for it before, what they want to know on the form? Do they ask what you will use the money for?

They don't want to know what the money is for. And it's the most depressing form to fill in. All about what your DC can't do that a child of the same age should be able to do. Self care, road sense etc. Really makes you concentrate on all your child's difficulties. Yuk!

Its a 57 page form. I'd kept a 6 month diary on DS and I photocopied 3 months of it to send with the form. It took me a few weeks to fill in, a bit at a time. They essentially want to know what makes caring for your child harder work than an ordinary kid the same age.

Use bullet points and be prepared to repeat the same points endlessly as a lot of the questions seem very similar to each other. Be aware the person reading the form will have NO idea what an asd is (or any other disability) and may not have kids themselves so write everything in very simple plain english terms, giving reasons for all your answers. (Imagine the person reading the form is an idiot basically). Enclose any relevant professional reports - the more recent the better, including your child's statement if you have one. The more professional evidence you send in, the less digging they will have to do in order to make the award. A thorough investigator may write to veryone you name, if the in tray is very deep that week though they may skim read and reject on auto if there isn't a body of evidence with the form to make them sit up and take note when they take youur application off the pile.

Ellenjane1 is right about it being depressing - the form itself needs a health warning. I cried when I finished as it really drives home to you the negatives and I cried when I got the award.

Everything is based on a camparison with a "normal" child at that age so there were a few suprises in the final award for me as I had no help from any advice organisation when filling in the form.

e.g I only got middle carers rate as it's considered "normal" for a 6 year old to still be wetting the bed and for a parent to have to comfort them after nightmares several times a night. (His night care needs would qualify a teen for the higher rate). I got lower rate mobility as DS needs, (a lot!) more supervision than his peers when out and about. I hadn't expected to get anything for mobility, so that was a suprise.

i have the dla form and have not yet filled it in, i have a copy of the cereba guide but to be honest it all looks to much!! My ds has not yet got an official dx but his paed report has put significant characteristics/features of an underlying communication disorder i.e asperges syndrome, we also have ed pyschs report that came back with lack of social skills, handflapping, rocking body back and forth, lack of empathy, dislike of loud noises, no eye contact and difficulty understanding basic instructions, and repetitive behaviour, my ds is 4 and still wets the bed, he also will not feed himself and will not walk for long as he says he is to tired so i end up having to carry him wherever i go, i still dont know about this dla form cos of him being only 4, with they say a lot of his issues are normal for his age?

dietcokeandwine I felt just like you and did not apply until DS was 15, and we have an indefinite award. He still needs supervision for a lot of things and the difference between him and a "normal" (now 16 year old) teenager is very marked. If you are not sure wait a while.
From what you have said in your OP you aren't doing much more for him than for a NT child, but this could well change as he gets older.

If you get high rate care component of DLA you may also get extra child tax credit. lisa6967 it sounds like your son would get DLA, and it's not dependent on having a diagnosis. You just need to show how your child needs more help than others of the same age. The form is daunting, and it's hard to focus on everything a child can't do, so doing it a bit at a time can help. The Contact a Family website has a good guide to filling in the form.

I have just filled in the DLA form and I felt like such a traitor. DS2 is so lovely and can do so many things.

However, his "stuff" does really restrict my working hours (thankfully I am self employed).

However, as he finds it so hard to make friends I am so often taking him to "things" that cost money.

He is often scared by things and sleeps in my bed or wakes me (he is 11). Thankfully I am divorced and can pay a lot of attention to him. But it also affects income, and I am really tired!

I think it does cost extra to keep an SN kid happy. Or cared for if things are more serious. And it costs a bit of money to keep our health up too surely?

whatever17 it is easier for u to get dla cos of urs sons age maybe? my ds is only 4, thats what concerns me, they will say still wets the bed and carrying him is still normal maybe, and GRW again his age questions things dosnt it, would like some advice on what people have written on their forms please anyone please help x

Mine was slightly different as Ds1 doesn't want my attention, and at night will do all he can to avoid it (like lying his blanket on the deliberately uncarpeted stairs so I can't hear him getting up at 1am to play Pokemon Tower Defence Three)

So I have to be hyper aware. Sometimes I fail miserable, and find a wan and hollow eyed (but ecstatically happy!!) little boy when I get up with my alarm at 7. Mostly I catch him. I also have to listen for asthma, as despite being very verbal, he's not very communicative, and have to listen for vomit, as again, he'll lie in it and cry rather than come and say "Mum, I've been sick" - because he cannot tell, as his 5 year old brother can, that there is a huge difference between waking mummy at 2 am for a talk on the various benefits of choosing Wario in Mariokart and waking mummy at 2 am to tell her you can't breather, or that your bed is full of vomit.

He seems to normal. Sometimes. At other times, I have noticed the looks I get aren't even disapproving any more, they are pitying , and it's somehow worse, that it is clear even to Joe Public that something is a real issue and not just bad parenting.... what looks like bad parenting of a 4 year old is fairly evident to be a Problem with an eight year old, I suppose.

I was just honest about the level of supervision needed. His peers sometimes walk to school alone - they certainly catch the school bus or go to the little shop alone. Ds1 can just about be trusted to go to the bathroom alone, but won't necessarily come back of his own accord. Or wipe his bum, flush, or wash his hands. When we are out, I take him in the diabled loos and bugger what anyone else thinks, disability is not restricted to wheelchairs. If we are with friends, I can send him with their sons and their 8 year olds will remind him to wash hands, and come back - if not, he needs me.

The feeling of being a traitor is perfectly normal. Honestly. I felt like I had lied - and yet I didn't lie, or exaggerate a thing. I was utterly honest.

I have applied for my eldest DD twice. the first time i put barely anything on the form (looking back) to me she was quite 'normal'. we got low rate care. this time i used a book from amazon and realised just how badly my girl is affected. shes now 12 and is so different to others her age.
with youngest DD, i first applied when she was 3 months old and on tube feeds. then again when she was 3yr old and 5yr old. when her award is up in 2014, ill be using my book again as it is specifically for hidden disabilities.
we were awarded low rate care for eldest untill the day before her 16th birthday and I really didnt expect to get that. from sending the claim form to getting the award letter was 3 weeks

But the money isn't for you, it is for your DS. If you don't feel you ned it atm, why not just put it into a bank accounf for him, incase the tim should arrive that you do need it.

As already mentioned, the forms are very depressing, and long, and if you are not entitled to it, you won't get it.

I can't see the harm personally.

You don't get it just because your ds has a dx. You get it if he presents as harder work than a child the same age.

Applying for it, isn't the same thing as getting it. Believe me if you are not entitled you won't get it. It is an impossible benefit to get without ample evidence and good reason.

hth

I was recently successful in applying for dla for my ds who has AS. We were awarded lrm and mrc. Reading the cerebra guide made us realise how much extra we have been doing but taking it for granted and I guess it felt "normal" to us. DS1 is about to start one to one swimming lessons (with an instructor experienced with ASD kids) for example which we could not have otherwise afforded before.