Lots of questions on asd / dla/ eya+ etc

[FlyMeToTheMoonAndLetMePlay]

I was told by a consultant paed from a specialist unit that ds (nearly three)has mid spectrum autism at his first appointment.I have not seen paed again but am due to see his usual paed soon, ongoing appts with cardiologist and geneticist later in the year.
Paed of development organised help so that ds could access nursery easier and he has an iep and early years action plus now which is great.

my questions are

Without 'formal' diagnosis would he be entitled to dla? Do I have to show written evidence etc?

I am not very pushy and although I am not phased by the issues he has, should I be doing more for him in terms of asking for things he may be entitled to not just dla?

He is not 'hard work' at all to me but I appreciate that others find it difficult to entertain his 'ways' and 'silence' Is dla really for those with dc who struggle more?(I don't mean to offend with that its just hard to get across what I mean)

As far as I can see early years action plus is different to a statement, Is a statement 'better' to have once they reach school age?

How possible is mainstream schooling if he has no speech?(he will be getting SALT as well )He will be going next year!

Thankyou

Just read through that and must apologise for blatent overuse of the speechmarks lol

Yes you can get DLA without a diagnosis. Gather together as many reports as you can to attach to your application. Paed, SALT, OT, consultant, his nursery teacher, whoever is seeing your ds- ask them to write specially for your application. My ds has Aspergers & dyspraxia - is bright, overwhelmingly talkative etc and it could be very different but he is also more difficult and less independent than totally NT children his age. I wanted the money for speech therapy, though I haven' organised any yet, being crap. You have to be honest when you fill in the form, but lay it on with a trowel and you MUST say 'because of his ASD' at the beginning of every sentence. I am convinced it makes a huge difference. eg "Because of his ASD he cannot speak. This means we must be with him at all times to help him communicate or act as his advocate." The process is very depressing though and stressful. I think your ds would benefit from a statement too.

You can get dla without 'formal diagnosis' and the more evidence you can give the better in any circumstance. My ds is similar in that I don't find him particularly hard to handle but then I couldn't leave him with many people as they would find him hard. Same with walking down the street - not a problem I just hold his hand but if I didn't hold his hand - huge problem! Applying for DLA is horrid but it's a case of putting as many examples of how things are harder than with an 'average child of that age' - worth doing though, we got it and we don't have a 'formal diagnosis' either.

Ref early years action plus - I don't know much about it but I'm pretty sure a statement is 'better'. But it's good you've got the action plus - definitley a step in the right direction.

That's about the extent of my knowledge but I'm sure someone wiser will be along soon!

MsDemeanor put it better!

We are just finishing off our first DLA application this weekend, DS is 3 and AS. I plan to spend the money (assuming we get low rate) on pre-school lunchclub and a couple of hours with a childminder friend each week so he will be practising his social skills and I get more time alone to deal with new baby. When he's older it can go in his child trust fund towards home-made rockets or whatever he's into aged 18.

We've been comparing DS to DD(NT) at the same age before answering each question. It is hard because no, he's not that hard work to us (never forget, special kids make special parents) but once you've got it all itemised on paper you realise that yes, you are definitely a special needs mum and he is entitled to the money. That's quite traumatic in itself, totting up all the negatives when it's your job to do the opposite, realising you have a label too - don't attempt it alone!
Things we have mentioned inc supervision - what he might get up to if unsupervised (esp with high pain threshold and reluctance to communicate), personal care - nappies and chronic diarrhoea, mobility - refuses to co-operate when walking out&about so still in pushchair for schoolruns (double buggy soon), having to avoid certain social situations unless 1-1 parenting due to sister only 5 (which will get worse with new baby's arrival.)

ds3 has been awarded dla until 2019 without formal dx

you'll learn to be pushy, i can guarantee that. A very few people dont need to ask but most do, but untiol you get to school age may not be an issue. However you need to know what to ask for first- NAS and help courses might give you a few ideas?

dla is for any child who requires more care than their peers, its graduated to reflect how much care

statements- the only legal guarantee of help and essential for a child with no speecg. search ipsea

speech- ds3 had none at your ds's age, is making progress now. he's in mainstream but tbh it wasnt what we wanted but has seemingly come right- so far......

another coup[le of dla tips:

get someone from the nas to read it through first, it can help

if close to 3rd birthday and theres a chance of qualifying for mobility, wait until after the date; ditto (more especially) 5th birthday- we forgot that one

take a sheet of paper and every time you write a negative on your form for dla, write a poasitive on the pare DO NOT send that to dla! kep it and read it when you feel dowm

underline important parts of the form; we have aggression, door alarms etc underlined

Thankyou all for the wonderfl tips, I am going to wait until after his next usual paed appointment and aplly online so that he will be three as peachy pointed out.

I had overlooked his high pain threshold buckets on the list that I compiled about him and yet only today he cut his palm quite badly on some glass and failed to reac at all to it.
It seemed so 'normal ' to me that he does not cry and I have to be there 24/7 that I did not register it. Will have to keep a notebook with me so that I can jot down things as they come to light.

One more question please, when you fill out the form, without diagnosis on paper, do you still refer to your dc having asd?

Thanks again all

I put possible asd on ds3's, because thats what it is (we have disapearing dx syndrome lol, have dx'd a few times and ten paed doubts herself..... its a bit odd, shall we say!)

I've also mentioned the AS makes him think he is totally independent/superior and without supervision how he will move heavy furniture around, steal food, climb on things to reach high up items etc rather than ask for help.

Timewise, our app would be better once he starts pre-school in Sep because his SEN worker would have observations to add too. He doesn't go anywhere at the moment so my mum is doing the 'person that knows him' statement this time. But as DLA seems to reject all 1st apps anyway, no doubt it will be Xmas by the time we appeal and can hopefully add a statement from the SEN lady.

I got DLA on the first application. My ds was six. I attached every report he'd ever had - and new ones I'd asked sympathetic professionals for, and all the ones we had for his statement.

rather than deine that as sense of superiority, I would call that considers himself immune to danger; danger is the key wprd. they dont care how onboxious (not that your son is but ine ca be) and superor they are, just what risks that presents.
If you can illustrate that with how that differs from his peers even better- a case for us would be

'S considers himself invulnerable and immune to danger; an example is how he believes he can outrun any vehicle, and so cannot be harmed by traffic. This means that whilst other children his age in our village might be trusted in the local park, S is unable to leave the house unless accompanied by an adult.

We got our renewal lunchtime today, a continuation of higher rate care (because his aggression makes 24/7 supervision essential- not the norm in AS i know) and we now have l-rate mobility.