Help with DLA for my son undiagnosed ASD and ADHA

[WonderMum2018]

I'm in need of some advice. My 14 year old son has had traits of ASD as ADHA from about the age of 3 years old, we have never had any help with him being assessed because he is ok at school, well so they say he is, but he does get detentions all the time for not doing homework or forgetting to hand it in. He also gets in trouble for disrupting the class in history the one subject he is not interested in. At school isn't the problem, it's as soon as he walks through the door after school and every day he isn't at school.

Anyway... I applied for DLA 6 months ago to be able to help him get off his electrics and get him out doing stuff he likes to do, just everything he is interested in is very expensive, and I thought because of all the extra help and supervising I have to give him at home and while out and about that I would give DLA a go, well it got refused and I asked for it to be looked at again and the same, refused. I did ask why and they told me that because I couldn't prove the extra help and supervising I do for him they can't grant the claim, My son didn't have have a diagnosis but was waiting to be seen by a clinic that study's the brain, but this isn't an assessment it is just for research, (the senco at school sent him,) we didn't have a referral for him to be assessed either.

Well now the doctors have referred my son to Neurodevelopmental service and they have accepted his referral and we are on a waiting list to be seen. (18 weeks or more waiting time) He has also had his appointment at the calm clinic to study his brain, we waiting for the senco at his school to get the report on that, could be 4 - 5 weeks then once she has it I will get the same report.

What I'm asking is if I make a claim again will I have a better chance of getting DLA with the referral ? And is there anything I can do to prove I help him with the things I help him with?

He would really benefit from the extra cash for him to have one to one time with me or my husband doing something he like and depend on his electronic as much.

It depends. You can get dla without a diagnosis because it is based on needs. I do think a diagnosis helps though. Have you got a local autism charity that could help

As Branleuse says there isn't a direct correlation between a diagnosis and needing DLA.
What you have to be able to demonstrate, is in what ways your ds needs considerably more support than other dc of his age.
In all honesty, 'getting him off electronics and doing something outside the house' would apply to all 14 yr olds I'd have thought.

Either you've not explained his needs well enough on the DLA form (The Cerebra guide is often recommended on here) or DWP are tightening up their DLA criteria and are wanting evidence of his needs. When he's 16, he'll be eligible for PIP and they need a shedload of evidence for that, so it's in his interests if you start collecting evidence of his needs now.

DWP will only accept medical evidence that has been completed, they aren't interested in any 'may be' or upcoming or in the pipeline investigations, but they are interested in the results of those investigations, so when you get the reports, you can submit them. however, I'd strongly advise you to take him for a diagnosis along the ASD/ADHD pathway.

he does get detentions all the time for not doing homework or forgetting to hand it in. He also gets in trouble for disrupting the class in history the one subject he is not interested in

He is not being properly supported in school. Effectively he's being punished for his disability which school won't stop doing, because he's undiagnosed. Go for a diagnosis.

At school isn't the problem
It actually is, see above.

it's as soon as he walks through the door after school
When he's been at school all day, he's like a bottle of fizzy pop that's been knocked over or shaken multiple times but he knows if he lets it go, he'll get into trouble, so as soon as he gets home he knows he's safe, the top blows, whoosh, all the fizzy pop explodes and it will take him a while afterwards to get back to his normal.

He is not being properly supported in school. Go for a diagnosis.

and every day he isn't at school.
That's probably because he has a problem with transitions and craves structure.
He needs more support at home, go for a diagnosis.

He's 14 now, please, get the right support in place for him before GCSEs.

Backforgood yes I agree all 14 year olds need to get out more, but my DS depends on his electrics to keep him calm. If he do t have them he is like a live wire. It's like a security blanket for him. He has a meltdown if we punish him and take them away from him, he will have a meltdown if we won't let him take it in the car even for 10-15 minute Journey. He has been like this since he was 3 years old. He never played with toys like others his age. Never play make believe o my even wanted my phone or tablet.

See this recent thread about autistic kids being punished for things they cannot help.
www.mumsnet.com/Talk/am_i_being_unreasonable/3393216-To-think-DD-is-basically-being-given-detention-for-being-autistic?pg=1

What’s are his care needs?

It is very hard to get DLA for a teen who can get themselves to school and shower etc by themselves. The descriptors are so specific.

BlankTimes I have been pushing for a diagnosis for 10 years now and because he don't show these traits at school they are not interested, 1st August the doctors finally referred us for an assessment and he has been accepted just waiting for the first appointment. I have been in contact with a support group for children with ASD but I feel because my DS isn't diagnosed we don't belong there. I know one of the leaders and she has worked with ADS children for a few years now and has said there is something there with my DS and she is the one that helped with my DLA form 6 months ago. I don't know what else to do...
I'm even having to make sure he is washing and deodorising, it's got to the point that I have to wash his hair for him because he don't wash it while I'm the shower, he says it feel funny  I have to even cut his food up because he can't cut it up himself, his eaten habits are not any better, only eat certain foods, he won't fill the dishwasher up because he don't like the feeling of dirty dishes, I did however get him some cotton lined rubber gloves to help and he seems to be doing ok with that. He will only wear certain clothes, but likes to be in just boxes. And his temper is off the scales, the littlest things set him off. If his DB or DS numbs into him be accident he will blow up at them. The other day I was trying to get something off his neck and he moved because he didn't want me to touch him and as he moved he hit his head. He screamed and shouted pushed the seat shouted at me telling me I pushed his head into the interior car door. It's upsetting and hard to deal with. Iv been waiting a long time for him to be seen and now they are going to see him I am worried they will say nothing wrong with him. I have been writing down incidents and things I help him with so I can take that along with me. Just hope it hurts so he can get the help he needs at school and me and his SD can get help to help him.

Davisday for me to write all his needs I'll be here for days, I have put just a few things in my last reply to BlankTimes but that is just a few and no where near to what he needs. His biggest problem is socialising. I worry myself sick to what the future holds for him, we have had 2 holidays this year one in at our local seaside, and one abroad, both was a struggle. Mostly on the socialising side. But I can't get into that this late at night. I will post more tomorrow..

No. The socialising thing isn't much part of the DLA form. I mean his needs according to DLA.

You need to get a list of the descriptors and work out how your son fits them.

I'm pleased you've finally got a diagnosis appointment, I know what it's like when no-one will listen for years and years.

Write down everything he does that is different to his peers and take it to his first appt for the assessment.

Also see if (well you've already described some like touch and temper!) he has any sensory needs, note that and take it with you to the assessment as well.
www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117

Unfortunately, teachers, Sencos etc. are not qualified to say if a child has or doesn't have autism. In your case and I've been through similar at primary, they are fully aware that the child is different but because they are okay academically and don't constantly attract the teacher's negative attention, they are "invisible" at school because school say they "don't see" and yet simultaneously, school will chastise them constantly for things their undiagnosed disabilities cause them to do.

Not washing, yes, it's a thing, there can be a lot of sensory stuff aligned to it, but for eating have you tried Caring Cutlery for him at home?
It has indents where you put your index finger and it makes the hand grip the cutlery properly, it was an absolute wow moment here from the first time it was used.
The only drawback is the adult size which he likely needs at 14, looks unattractive, but we work on if it's at home and it helps, its appearnce doesn't matter.
www.completecareshop.co.uk/eating-aids/caring-cutlery-range/

It sounds like hes got a lot of sensory issues, executive function issues and has become over reliant on electronics to self regulate his emotions. Youre definitely right to push for a diagnosis. You can speak to the senco about all this stuff. He might not qualify for an EHCP if he can sort of manage at school but they can help support your referral to paeds for further investigation.

Download the Cerebra guide to the DLA form.

As with all these applications much is decided on your “evidence”. I’ve got a sneaking suspicion that they “weigh” the bundle and check the list of professionals involved. So try to make the application the most impressive looking that you can. Best of luck.

I know this may sound harsh but I mean it in a helpful way. You need to separate your diagnosis situation with the DLA claim.

All the reasons your son needs a diagnosis are not necessarily what the DLA form needs.

The cerebra guide from a pp is a good call. Use it to help you filter through the bits you need for the DLA.

I'm not saying everything your son does and the help he needs as a whole are not important factors, just that your posts are a combination of your struggle for a diagnosis and your claim for DLA. If you can separate the 2, your claim will come much easier.

Good luck with the diagnosis. I had one DC diagnosed at 9 and got DLA awarded until she was 14. Unfortunately after that it stopped because she could walk to school and toilet independently. It's harsh. She is still autistic. Still has the same struggles, but you know, I have worked hard to help her achieve these things and it basically bit us on the arse. It's not so much the money but the fact that no one will consider her 'disabled' now because the DWP say she isn't.

I'm currently doing a form for an 8yo who isn't diagnosed yet, but I'm going with the needs over diagnosis approach as that is what it is supposed to be.

It's hard when you are literally drowning in this stuff, all you do is go over the worst of your child, try and write on a separate note pad for yourself as you go along some of their good points, it does help you keep some balanace.

Dla isn’t dependent on diagnosis. My ds was awarded high rate dla when he was 2.8 years old and hadn’t even seen a paediatrician- he had been referred for autism but at that point had only seen the gp. His dla was renewed at 5 and by then he had a diagnosis of autism and learning disabilities and he was given high rate care again until he was 16.

You need to use the cerebra dla form and go through the whole form very, very carefully.

I would agree that from what you’ve written your son isn’t being well supported at school. This should be tackled and evidenced and then this can be used in support of your application.

I would also say that at 16 when you apply for pip for him you need to ignore the tick boxes on the form and write paragraphs in response to each answer - so many people think they need to tick the boxes and don’t write enough on these forms, especially for things like autism etc the forms do not “fit” the disability so people need to make the form fit.

Thank you everyone for your help, we are waiting for a report from the CALM clinic in Cambridge, it's not a diagnosis but the forms I filled in and the tests my son had is very similar to the ones they do for ASD and ADHD so will give an indication of his struggles, I am hoping the report comes through before the forms need to be back so they can be sent with them. Hopefully once the senco teacher at his school had the report they will help more in the school and when dla call her she has more info to give them to back me up. I have been fighting for my son for more then 10 years now, all I really want is for him to have the support to help him in as he grows up and become an adult, I fear for his safety due to his ways of dealing with things is not how any average person does, I say average as who knows what normal is. He don't have many real friend as they don't get him. I just need this diagnosis for piece of mind and help to help him deal with life as he become and adult.

Thanks again for all your help it's been very helpful

and when dla call her she has more info to give them to back me up

Don't rely on this happening. Ask SENCO to write a supporting letter which you can include with your application/appeal.

Yes I second getting the senco to write a letter to give to you and you can send it on to the dla people. That way you know exactly what she’s said and can ask her to amend it if necessary.

Whatever supporting evidence you have; write the forms as if you have none. The form should be comprehensive and stand alone; the forms should merely back it up. So many people rely too much on evidence thinking the dla form isn’t necessary but that’s the most important part.

Sorry you have had such a fight with getting a diagnosis. I can offer you some tips on what helped us as I know different areas have different procedures. We got a referral to CAMHs via the GP, before the CAMHs appointment it helped us to do the following:

1. Do a bullet point of medical history from birth to present, including any milestones not met sensory issues (restricted diet). Wherever possible evidence with any doctors notes/ HV Notes
2. Any symptoms and if possible link to the triad of communication issues used to assess Autism (they have started to include sensory issues with this as it’s a common thing with Autistic children/ adults.
3. Any reports/ correspondence with school that could link to any of the issues (detentions for not doing homework could be linked to processing difficulties/ not understanding teacher).

During the appointment we handed these in so the person doing the initial appointment could see the traits clearly linked with examples/ evidence. Then if you are successful this time round with the DLA after you get further reports do a change of circumstances and it should reflect the need better. National Autistic Society really helped us, they have a advice line and a really good website. Child Law website breaks down the SEN process really well. IPSEA is also really good especially when you are at the EHCP stage. Keep a log of things and a written trail of communications with the school. If you have conversations follow up with a polite email to keep as evidence for any part along the process. Good luck!

Thank you all. I have been keeping notes of meltdowns and issues, when they go back to school I will get a report about the homework detention. Thanks again

I have been getting higher rate dla for my 11yr old for 2 years now

It is due for renewal but I don't know who to ask for a professional to sign the form

Two yes ago we had specialist doctors and CALMs people who signed it, but I think they wee making him worse even though they meant well

Are there any agencies involved still Like Inclusion Support/ Ed Psychologist/ SENCo/ Autism West Midlands/ BEAM/ SALT/ OT. I know with the initial application it was just a case of submitting reports so I am not yet familiar with the renewal but I would have thought above should be able to. Sorry if that doesn’t help

Would somebody from my congregation be able to sign my reapplication form? They have been the best help with my son.

Thanks Rose, we felt all the appointments were making him worse so haven't been for over a year. Our Christian congregation has been the most help but they are not qualified professionals working with kids conditions

My advice would be to call the DLA help line and ask them directly. Does your child have SEN support at school? The other thing worth doing if you haven’t already done so depending on the reason your child has DLA is to look at the support offered locally and acces it.