DLA claim rejected - ASD

[claireyd89]

My first time posting but I am after some advice... It's a long one - sorry!

My DS is 5 and I believe has ASD but is yet to be formally diagnosed. He was initially referred by his pre-school (after me raising concerns following a family holiday in October 2021) and was referred to speech and language and the paediatrician. The paed rejected the referral on the basis that speech and language hadn't seen him. I called and explained that though there is an obvious speech and language need, I don't beleive this to be the main area of need for him. He is very repetative, very routine, sensitive to sound and texture of food and also has some other sensory 'things'. He was re-referred in March 2022 and we are currently still waiting to get him in front of somebody.
He has completed the 6 sessions of speech and language and again, though she identified that he is not where he needs to be, most of the resulting report surrounds his lack of concentration and focus on the tasks.
I have three other children who are not SEN and so I am really unfamiliar with the processes and what I should be doing and when. At the moment We are looking at 12-18 months before a peadiatritian sees him. He has since started school, they are providing teir 2 support at the moment (teir 3 for them is something really tailored and teir 4 is EHCP) and are I think holiding off of tier 3 because he is currently managing(ish) though they have concerns that next year he will not manage because there is much more expectation to sit and learn.
With this, seeing him every day and being surrounded by friends both with and without SEN children, it has been suggested time and time again that we should apply for DLA for him. I was reluctant due to the lack of a formal diagnosis and the fact that loads of this is about waiting and seeing.

Anyway, I applied and they received it on the 9th November 22. I called today as I have heard nothing and was told it has been declined but do not yet have the letter to tell me on what grounds. I'm thinking I probably should have waited until I have the diagnosis.

So basically, I just want to know if anybody else has been in this position and if so, what I should do. Should I reapply or appeal? Should I not have applied in the first place? I dont know that he deserves it, I have no idea what the criteria is but was told over and over that I should apply. In honesty, I'm not really even focussing on the money but its just so frustrating that everywhere we turn it's a fight to get things you know your child deserves.

Any help or guidance would be so appreciated at this point.

Mandatory reconsideration

Wait until you get the paperwork then see how they have broken it down. You then need to counter argue each point and explain and evidence why you feel he should have been scored in them. It's fucking hard but don't give up.

Sorry - I should clarify when I say 12-18 months before a paediatrition sees him, I mean 12-18 months from March 2022 - so hopefully this wont be too much longer.

Whilst you can appeal, but it may be you don't meet the criteria. We only met the criteria with dd at age 10 because it's based on how much additional support they need over and above a typical child.

You need to fill in the form from the viewpoint of setting out what additional care needs he has above a typical child his age. How does his condition affect his care needs. Some children with the condition your son has do not have many additional care needs at that age but this changes as they older and differences are more noticeable. See what feedback says. You don't get DLA or PIP for being diagnosed with a condition. It is how much additional care needs they have or mobility needs if they struggle to walk.

Some children even with EHCP don't get DLA.

It's awful. Such a broken system. We took out a credit card, paid for diagnosis and support and are now about to apply for dla. I hope we don't get rejected as he has significant needs

Thank you, that's helpful. I think thats the difficulty - some of the things are hard to explain and maybe I didnt provide enough detail. I think I have been guilty of 'thats the way he is' rather than look at it through the lens of him having a conditition.

We are tempted to do the same for the diagnosis. But also we have already nearly waited a year so it's hard. Its also hard when you don't know what you are supposed to be doing - it feels overwhelming.

Can I ask whether you applied mulit[ple times before meeting the criteria because I feel thats where we'll probably end up...?

My DGS(5) was awarded DLA a year ago and he doesn't have a diagnosis yet.

I know my DD had a lot of evidence to back up her claim, I'm not sure what she included though. At the time my DGS was really struggling in mainstream, despite 1:1 - a EHCP was put in place, he could barely last the hour before his mum was called in. He eventually was moved to a specialist school for ASD and has been doing brilliant there - the teachers are amazing.

She had paperwork from the school (lots of it!) and the educational psychologist (who was based at the mainstream). It was actually the EP who advised her to apply for DLA.

DLA is a lottery really, there doesn't seem to be any consistency with how they deal with claims. My friends DD was turned down even though she has serious mobility issues, multiple operations, daily use of oramoph to control the pain, used a wheelchair/crutches - even needed the house adapted as she can't manage stairs. She was declined at application, again at mandatory reconsideration and it was eventually overturned at the tribunal. Unbelievable really.

My DGS was awarded his DLA at the first round 🤷🏻‍♀️

Keep pushing, they hope you'll go away without fighting!

One of mine lost their DLA when they were 12 because they could walk to school. I shit you not. I didn't even fight it because I had zero energy left at that point.

The walk to school was the end of our street, about 30ft then a path up the side of the school fence and through a back gate.

@claireyd89

I applied at 5, then at 8 then at 10. By 10 there was distinct divergent needs from a typical child of that age for instance bolting, complete meltdowns requiring two adult to deal with, food refusal, camhs each week whereas earlier whilst she was different to my typically developing daughter, needed different parenting techniques, she didn't cost me any more if I'm completely honest. Dla (pip) are meant to cover the extra costs of being disabled so it's a good starting point as to whether it's likely to be successful (not an exact science but a starting place)

One of my grandchildren was awarded DLA aged 4, several months before ASD diagnosis. However it was already very evident that their care needs were much higher than expected for a 4 year old - functioning developmentally between 12-18 months, no speech, very mobile, no sense of danger, feeding difficulties and very poor sleep pattern.

In all honesty a diagnosis will not necessarily mean you get it.

Respectfully what you have described at the moment is not too far off what you would be doing with a normal 5 year old.

The difficulties may be one more pronounced as the child may not develop in line with his peers

for example they are 9 years but your son is more like a 5 year old and you are carrying that burden around ie road safety, toileting etc

You could wait for diagnosis and then reapply or reapply now.

However as others have said it may be that they do not fit the criteria. I have two DS 6 and 8, who receive middle rate DLA: both non-verbal, in nappies, poor sleepers, in special education. Both have EHCPs.

I'm not saying anyone must have any particular needs but just to give you an example for us.

Thank you - that makes sense. I have omitted most of the day to day from my post but now understand that that detail is probably vital, particularly for the claim. That could be why the claim would be declined, but even with the detail I guess they still may not award it until it becomes pronounced. It's not much more care than a normal 5 year old but definately much more reassuring, planning and generally being more aware and adapting than I have ever had to do with my older children.
But thank you for your repsonse, any opinion or advice is super helpful!

From what I have been reading this seems to common. Interestingly the children who I know who have been awarded it seem developmentally ahead of my DS and from the outside I think you'd likely notice it more in him than them. That's not to say they arent awful in school or at home, I'm not sure about that, but it is interesting.
I think the best thing I can do is wait for the letter and see whether its just that I havent provided enough detail or whether he just doesn't yet seem to fit the criteria.
Thank you for your help though :)

Hi couldn't just read and run bare with me 1st post here , I'm also in the same position as you with practically the same dates 10/11 . Also declined today for my 7year old with no letter as of yet and with very similar reasons for decline ( disputed age appropriate reasons) . Just wondered if they "fell" on the same DM's pile 🤔 sounds very similar. Unsure of what to do next although in the heat of the moment I have opened a MR stating my reasons over the phone , I've also stated I will be replying with written statements once the letter has been received. Just soul destroying fighting all the time 😔@claireyd89

Oh wow. Yes it sounds very similar though they didn’t even give me any reasons over the phone! I have found the whole thing to be a nightmare and I can absolutely see why people just give up! It has made me feel like I’m asking for something I don’t deserve and whilst I am sure my DS has ASD, I’m wondering how bad it needs to get before he deserves it and that’s terrifying for me. I really hope you get what I’m sure your child deserves. Naïvely, this is not a position I ever thought I’d find myself in after having 3 neurotypical children and I feel like I don’t know where to turn next. So bloody frustrating. I’d love to hear how you get on with your appeal, I think I will do the same just on the basis that I’ve already waited so long and have seen a difference in his behaviour in the last 3 months so starting again will be a nightmare.

Agree it does seem to be inconsistent I applied for 2 of my children before diagnosis and got awarded both times, one I only sent a letter from the paediatrician, I sent the same letter when it was renewed 2 years later and got awarded again.

It might just be that you didn’t provide enough evidence for them. I used the DLA guide from Cerebra and found it incredibly helpful in terms of breaking down the meaning and scope of each question, so you can provide the evidence they’re looking for.

My son is “high functioning” (I hate that term but for the purposes of this thread I’ll use it) and has no EHCP and he receives DLA. If your child had care and supervision needs that are higher than a typical child, you should qualify for DLA.