Dla and son with autism advice

bloolagoon

merlin68 wrote: »

You don't have to have added expenditure. DWP don't ask for receipts.
You just have to have extra care needs
.

Some people think that's a better solution as those with severe needs lose out and those with less needs gain an income unnecessarily

missbiggles1

merlin68 wrote: »

You don't have to have added expenditure. DWP don't ask for receipts.
You just have to have extra care needs
You may well find that as your aspie son goes through life, that not having dla will impact on help that he may have got, had he had that award.
As everything seems to hinge on a dla award.

You may find that he does better in life without a large label saying "disabled" hanging round his neck.

[Deleted User]

missbiggles1 wrote: »

You may find that he does better in life without a large label saying "disabled" hanging round his neck.

Very true I know because I have epilepsy as well as a son with autism but much of the support, services and legal protection is not forthcoming unless that sign is there.

Indie_Kid

missbiggles1 wrote: »

You may find that he does better in life without a large label saying "disabled" hanging round his neck.

I've found the opposite. Maybe I wouldn't have tried to kill myself at the age of 20 if I'd been diagnosed sooner and been given support.

It also means I do have a reason for my poor communication skills.

SingleSue

missbiggles1 wrote: »

You may find that he does better in life without a large label saying "disabled" hanging round his neck.

Unfortunately it appears to be the opposite in this country. Youngest couldn't access the correct support until he had that 'label'. This meant no specialised speech therapy (in fact no speech therapy because the normal kind was not suitable according to them), he couldn't access the correct therapies for autism designed for the under 5's, there was no support for in the home for his siblings or advice on how to deal with things....purely because of no label.

It wasn't until he received his formal diagnosis over 3 years after starting the process that he could finally access those programmes....and by then, he was too old for the most important foundation ones.

Youngest screamed for the first 5 years of life, in desperation, I trawled the internet for information and did my own speech therapy with him. It was a long and very slow process, half the time I didn't know if what I was doing was the right thing but in the absence of any kind of support, I took the view it was better than nothing. Luckily, it appears I did do something right as he finally started to have some speech by the time he was 6 and now aged 17, he talks the hind leg off a donkey :rotfl:

He was also completely cut off from the outside world, he couldn't relate to anyone or anything. The work involved just to get the shutters to come up just for a few seconds was tremendous....but I had to pay for that help as the lack of diagnosis in the earlier years meant that he had missed the cut off.

It has been and will continue to be a very long road with youngest, any kind of small wobble means he retreats to his private world again, the shutters firmly shut and we 'lose' him but all that money, all that work, all the travelling for appointments and therapies has resulted in youngest going from a child who was unable to function and was not expected to even do GCSEs, to a young man at college, doing A levels (ok, he had to redo a year for GCSEs) and hoping to go to university in 2 years time. He still needs a huge amount of support in education and at home, his costly therapies have to continue and probably will have to for his entire life.

But it may well have been a shorter, easier road if that intervention had come when it was first realised that he may have an ASD (when he was 19 months old)

So yes, a label is very important to access the help at the right time and before it is too late and any help given becomes the equivalent of climbing a mountain instead of a hill.

Mummyboo777

There are some bitter people around, people are quick to be the judge and jury, I shall let the professionals decide what my son is entitled to, I wouldn't begrudge anyone of claiming for a disabled child, what is wrong with you people. Now people who sit on there !!!! claiming jsa yes I get. Me and my husband worked all our lives, we are lucky enough to have children, if I can improve things a little for my boy, they God Dam I will. That's not a crime, that's doing the best for my child who requires more help due to his condition.

missbiggles1

_shel wrote: »

Very true I know because I have epilepsy as well as a son with autism but much of the support, services and legal protection is not forthcoming unless that sign is there.

And sometimes that's the impression given rather than the reality.

My husband would have been eligible for a Blue Badge for some years but our council's information stated quite clearly that you needed to be claiming DLA mobility to get it, which he didn't want to do.

Fortunately, a colleague in a similar position told us that this wasn't actually the case, he applied and was awarded it immediately. I don't know how often this is the case but it wouldn't surprise me to hear that it's not unusual.

missbiggles1

SingleSue wrote: »

Unfortunately it appears to be the opposite in this country. Youngest couldn't access the correct support until he had that 'label'. This meant no specialised speech therapy (in fact no speech therapy because the normal kind was not suitable according to them), he couldn't access the correct therapies for autism designed for the under 5's, there was no support for in the home for his siblings or advice on how to deal with things....purely because of no label.

It wasn't until he received his formal diagnosis over 3 years after starting the process that he could finally access those programmes....and by then, he was too old for the most important foundation ones.

Youngest screamed for the first 5 years of life, in desperation, I trawled the internet for information and did my own speech therapy with him. It was a long and very slow process, half the time I didn't know if what I was doing was the right thing but in the absence of any kind of support, I took the view it was better than nothing. Luckily, it appears I did do something right as he finally started to have some speech by the time he was 6 and now aged 17, he talks the hind leg off a donkey :rotfl:

He was also completely cut off from the outside world, he couldn't relate to anyone or anything. The work involved just to get the shutters to come up just for a few seconds was tremendous....but I had to pay for that help as the lack of diagnosis in the earlier years meant that he had missed the cut off.

It has been and will continue to be a very long road with youngest, any kind of small wobble means he retreats to his private world again, the shutters firmly shut and we 'lose' him but all that money, all that work, all the travelling for appointments and therapies has resulted in youngest going from a child who was unable to function and was not expected to even do GCSEs, to a young man at college, doing A levels (ok, he had to redo a year for GCSEs) and hoping to go to university in 2 years time. He still needs a huge amount of support in education and at home, his costly therapies have to continue and probably will have to for his entire life.

But it may well have been a shorter, easier road if that intervention had come when it was first realised that he may have an ASD (when he was 19 months old)

So yes, a label is very important to access the help at the right time and before it is too late and any help given becomes the equivalent of climbing a mountain instead of a hill.

But getting the "label", ie diagnosis, isn't the same thing as claiming DLA etc. Obviously a diagnosis is going to be required to get appropriate support but claiming benefits isn't necessaily a requirement.

Unfortunately some people seem to think that a diagnosis and claiming benefits are synonymous which definitely isn't the case. I think we should make that distinction very clear.

missbiggles1

Mummyboo777 wrote: »

There are some bitter people around, people are quick to be the judge and jury, I shall let the professionals decide what my son is entitled to, I wouldn't begrudge anyone of claiming for a disabled child, what is wrong with you people. Now people who sit on there !!!! claiming jsa yes I get. Me and my husband worked all our lives, we are lucky enough to have children, if I can improve things a little for my boy, they God Dam I will. That's not a crime, that's doing the best for my child who requires more help due to his condition.

It isn't bitterness to query benefits policy or to point out that claiming them isn't necessarily the best way forward for everybody. Of course, throwing the entitlement word round is always likely to get people's backs up.

Feyfangirl

Autism like others have said is a spectrum, varying degrees of severity. I myself have Asperger's, have various needs but do not claim DLA... but in the case of my youngest brother, who is on the opposite end of the spectrum to me, his needs are severe, he needs round the clock care, he's in nappies; has lots of other conditions that go with the autism too. we do claim DLA (my family) for him, and the money goes on him.. you should NEVER be made to feel bad for taking the help offered to you Nobody asks to be autistic, but like all things in life, it happens. No thing on my fellow autistic, but I do understand that parents/care givers may need extra financial support to make sure all needs for said autistic child are met (and if said child is in the care of authorities, the authorities would have more to pay for, and have less if they are cared for by their families)

You will need to get some extra evidence and back up from medical professionals/educational professionals to support your claim. I wish you luck OP hope things work out for you and your family!