To not seek diagnosis..

[Unmummsymum2022]

5 year old DS. Global delay diagnosis already. Very clear ADHD. Very clear Autism. Highly likely dyspraxia and issues with his muscle tone. Not yet toilet trained.

He has an EHCP already. Our NHS trust operate a policy of if a GDD dx is given at preschool age then they discharge and they are to be re-referred once they start school if there are further issues.

That means presently he isn't under peadiatrics. I fund OT privately and his specific needs are fairly well known due to his EHCP.

After the struggle we had getting sibling assessed on the NHS I lost all faith in the system. It nearly destroyed our family.

Would I BU to wait until we can eventually spare the cash to go privately and skip NHS altogether?

Is he missing out if he doesn't have the dx until much later on? I worry the GDD label will become null/meaningless soon as it is just "delay" rather than showing there is an underlying cause. I don't want him to lose his support.

But realistically it will be 3+ years before he gets assessed on the NHS anyway.

AIBU to not do it?

YANBU. But if it’s a three year wait in your area I’d do the referral now in case things change in the next couple of years and you wish you had.

If the wait is that long it sounds like there’s little harm in starting the NHS route anyway but otherwise cracking on as you are and self-funding when possible?

You do both. Stay on the NHS waiting list and if the situation becomes more pressing then you can fast track to private. If your own circumstances change and you couldn't afford a private diagnosis then you would need to start the 3 year wait all over again. Also, an NHS diagnosis can sometimes carry more weight with some councils. On this schedule you should have more info. for a more detailed EHCP if needed by the end of primary ready for secondary.

It will just change to learning difficulties. They use gdd as an umbrella term because some children are neglected and do grow out of it . Obvs most don't as there is a genetic / neurological issue .

Get the referral in. EHCP is great but needs may change as he gets older, and if you find he needs specialist Autism/ADHD school provision some will only take children with a formal diagnosis even when it’s blindingly obvious.

Do you mean he has a diagnosis of GDD but no actual diagnosis for ASD or ADHD? If do I think you really need these diagnosis and as soon as possible (which is likely to be years in any case)..

I would stick him on the pathway for diagnosis on the nhs now. That doesnt stop you saving and funding a private diagnosis when you can afford one if you hsvent reached the front of the nhs queue.

I would say do both too. What I would do right now if you haven't already is to write every single thing down going back to when signs first started and list everything that suggests ADHD, ASD or dyspraxia. Do you have to go through CAHMS to get assessed? It varies by area I think and i've heard nothing good about having to go through CAHMS. We were lucky and didn't, saw one specialist and DS was diagnosed in 45 minutes for ASD and dyspraxia despite school saying he seemed fine. I literally wrote every single sign down since he was born! You do forget as they get older though so worth noting things down when you notice it. It may be easier to diagnose him at 8 than 5 anyway on the NHS as they won't be able to put things down to his young age/he might grow out of it as easily.

I'm not even sure I will be able to get him back on the NHS list, the criteria is so obscenely high. My oldest wasn't accepted until absolute crisis point and it has traumatised us all.

@Porcupineintherough

Do you mean he has a diagnosis of GDD but no actual diagnosis for ASD or ADHD? If do I think you really need these diagnosis and as soon as possible (which is likely to be years in any case)..

I would stick him on the pathway for diagnosis on the nhs now. That doesnt stop you saving and funding a private diagnosis when you can afford one if you hsvent reached the front of the nhs queue.

Yes, that's what I meant.

I dont want to jinx it (and we are going private for that very reason) but you may find the going easier as you already have one child diagnosed. A tip from a friend of mine was to not just explain what traits a child has that meet the diagnostic criteria but emphasise what difficulties they are having and why a diagnosis would be beneficial. Eg X's sensory needs means that he often gets overwhelmed in group situations and has started refusing school. We feel a diagnosis would be beneficial ad it would allow us to access Y...

Apologies if I am teaching you how to suck eggs.

As a teacher I'd say YABVU not to get formal diagnosis as young as possible. You say its 'very clear' they have autism and adhd but if they aren't diagnosed I cannot access the Autism/ADHD support pathways for your child. To put it bluntly, they don't tick the boxes so they don't get the support. Believe me this is as frustrating to me as it is to you, and I have had many an argument over this regarding various children I've been required to teach with various SENCOs over the years.

@JustOneMoreStep

As a teacher I'd say YABVU not to get formal diagnosis as young as possible. You say its 'very clear' they have autism and adhd but if they aren't diagnosed I cannot access the Autism/ADHD support pathways for your child. To put it bluntly, they don't tick the boxes so they don't get the support. Believe me this is as frustrating to me as it is to you, and I have had many an argument over this regarding various children I've been required to teach with various SENCOs over the years.

We don't have ASD/ADHD support pathways education wise here. I'm fairly confident with the education side of things just as I've really had to get to grips with it for oldest. I don't know if that's just our LA and services recognising how grim the diagnosis process is in our area though!

@Porcupineintherough that would be amazing if it does make a difference, especially as he was assessed/diagnosed for GDD at 2 and received his EHCP a few weeks after he turned 4. To me and school it's very clearly atypical rather than just delayed.

He also has a fab school but I know how easily that can change.

I would do it as I am now having problems with my 13 year old who has obviously got autism but without a formal diagnosis it's really hard to access certain services. However with your experience with your older child then you will know a lot better than me about the services in your area.

You may as well start the NHS process anyway. Also look at Caudwell Children who, if your income is less than £45k, can offer ASD assessments either free or at a vastly reduced cost depending on what funding they have available at that time.

Why are you funding OT privately? It can be included in the EHCP. No need to sit on the NHS waiting lists and can be more frequently and for longer than would otherwise typically be available on the NHS. If it is specified and quantified in section F the LA must provide it, if the NHS can’t or won’t the LA must commission independent provision.

I agree with SilenceofthePrams One big benefit to an ASD diagnosis is if you ever want to consider specialist ASD school provision.