So is my DS neurodiverse or not?

[Petunia23]

Around a year ago, my DS's school suggested they saw traits of ASD in him. He was 7 at this time. Due to this, myself and the school filled in the relevant paperwork to get him assessed through the NHS (CAMHS). I received a letter from them in reply stating they had received the form, but we were looking at a 3 year wait. Due to to this, I paid for my DS to be privately assessed, it cost £3,000 and he was diagnosed with both ASD and ADHD, with ADHD being his primary diagnosis. We're currently exploring the possibility of medication, but again will need to seek the prescription privately. It is clear to me, now my son is 8, that he is clearly neurodiverse (though admittedly happy and currently doing well at school academically).

I had not taken my DS off the NHS list because I was hoping to transfer care and not have to continue to pay for everything, so they are not aware of his private diagnosis'. I have just had a letter from the NHS (CAMHS) today, saying my DS does not meet their threshold for any developmental condition or neurodiversity and they will not be assessing him.

AIBU to think it's poor that my DS has been dismissed by the NHS and CAMHS? They are clearly letting children down and I am fortunate enough to be in a position where I can afford £3,000, there are many who cannot!

TBF CAMHS let children down even after assessment and diagnosis. Its appalling.

CAMHS are massively underfunded. They are good people working there, but there's just not enough of them to see all the kids that need to be seen. Thresholds are high, and increasing. I would get in contact with them and ask them to reassess their decision. Give them any additional details that have come up between you filling in the paperwork and now. Are there any additional issues that the GP could write in support with?

Additionally many CAMHS practices don't accept private ADHD/ASD diagnoses. Or don't accept them from specific private practitioners that they are aware of

I work for the NHS, not in CAMHS, but work closely with them and I'm aware of some of the work that's going on in the area. Demand for autism and ADHD assessments has soared over the last few years, as a result of greater awareness, and although more assessments are being carried out, the waiting lists just get longer.

Therefore thresholds need to be out in place to ensure that children who need the help most get seen. You say your son is happy and doing well academically, what is it you're hoping to get from a diagnosis from CAMHS? If it's medication, you probably will need to pay if you really think it'll benefit him, but if he's performing well academically, does he really need it? The strategies for managing ADHD and Autism are the same, whether you have a diagnosis or not, so you should be able to access these and use them with your son.

If you're looking for an EHCP, you don't need a diagnosis to apply for one.

Same thing happened to my son. Cahms wouldn’t accept him, saying he didnt meet the criteria.

had my son privately assessed, he has ASD and learning difficulties.

luckily I sent the diagnoses letters to my gp so he just updated everything his end.

My daughter has just been accepted for an assessment

Posted too soon
She's been accepted because she's struggling at school now ( she's been refused 3 times previously)

I'm worried about this for DS. Academically he's doing ok, but he's clearly under achieving ATM because his focus is so poor. His teacher has said he's really struggling due to the severity of his behaviour. He's well behaved most of the time - he just can't focus at all and his work in school is suffering as he can't get it onto paper easily. Yet he's making all his targets / showing that his ability is well into exceeding. So should he just 'accept it' because he's doing ok academically? Seriously? He should be left to rot rather than being given the opportunity to meet his potential because there's a competition where he's seen as less important because there's another kid who is less clever?

His teacher has warned us this is a distinct possibility, but it was school who have raised the fact that his concerntration is so bad it's a problem. We've always had suspicions and are pretty sure DH was ADHD. I'm more curious - I have a mental health history which with the benefit of hindsight in the context of DS is looking incredibly like ADHD is my problem to. In my case it's caused me significant problems and affected my ability to keep a job. I've had two breakdowns.

But I'm academically bright. Under achieved against expectations too.

I am really pissed off that someone who is coming from a medical background in the NHS is a) advocating medical rationing in a competitive fashion rather than looking at actual need on an individual basis b) appears to be suggesting that we should be defining need based solely on academic ability.

Are you actually for real? The impact of ADHD is way more than that and to see it being framed in this way is appalling.

I am hoping to god we don't hit this brick wall, but seeing someone in this sector doing exactly this doesn't fill me with hope tbh. Having to go through the extra stress, cost and complication of getting a private diagnosis and then have that accepted by the NHS as 'legitimate' is something I will really really struggle with (for above reasons!). And that's on top of trying to figure out my own position on this and potentially navigating a diagnosis - which won't have anything to do with my academic ability ironically.

Seriously.

Why would the OP want to pursue it if their child was doing ok academically???

Errrr derr... I dunno, so they don't have a catalogue of associated mental health problems which are a well documented comorbidity with unregulated / controlled ADHD perhaps.

Are you seriously saying 'oh well if your kids got ADHD and doing ok academically tough shit, other kids need more help and your kid should just accept their lot in life unless you are loaded enough to dip your hand in your pocket'?

Appalling.

@RedToothBrush the point I'm trying to make so that the NHS only has a finite amount of resource so has to prioritise those whose needs are the greatest. Of course, in a ideal world, there would be no delays in accessing an assessment but that not the case. And it's not just a funding issue, it's also about recruitment and getting the qualified staff to do the assessments. Many psychologists are choosing to work privately where they can get better pay and better conditions (and who can blame them). I understand people are angry, but blame the government, who are systematically destroying the NHS, not services like CAMHS who are desperately stretched and trying to what they can.

My son has ADHD and Autism and I had to pay for a private assessment too so I do understand how it feels.

My ds went for a pre assessment appointment.. 9 am appointment.. Receptionist came to tell me (at 9 am) the assigned person was off and was x OK to see? X came out and took ds away. We were back in the car at 9.07.
Ds didn't meet the criteria for assessment.
He was asked 4 questions.
School helping with assessment process as it has now changed..

@RedToothBrush exactly this. I was diagnosed aged 43 - adhd. Also did well at school. At university too - although there was always a point I couldn’t get past with essays. I understood what I needed to do. But somehow couldn’t do it. Similar with work. Now I know why.
Now I take medication- it’s not an exaggeration to say it has dramatically changed my life for the better.
Just because a child is doing ok academically that’s ok. When they could achieve so much more. Disappointed to see someone from a medical background with this attitude.

Its difficult, waiting lists are getting longer, and now because of covid it's even more so.

I work in ASD diagnostics and have worked with NHS then a private charity and now a number of private companies where we do the same.

It's a shame but for those who can afford it go private and the NHS criteria is getting tighter and tighter.

And as a previous poster has said, CAHMs is under funded and in my opinion its needs a big change.

Surely if he's been diagnosed privately then all you need to do is send the paperwork to his GP and it will be updated accordingly. There's no reason to also get him assessed under the NHS too?

It is awful that provision for assessments is so lacking. Howevet your son is one of the lucky ones being able to be diagnosed privately. Send your GP the relevant documents and think yourself lucky.
I had to pay for my son's diagnosis so I can empathise.

Mental health services for some reason do not like to admit to patients/patients' parents that they are incapable of providing help to everybody who needs help. So instead, they set the threshold for getting help way higher, and try to give everyone who doesn't meet that ridiculously high threshold the impression that they don't actually need help. It's a sort of medical gaslighting, where you feel you must be going mad because you feel like you're struggling a lot, while they're telling you you're fine and don't need their help. I'd much rather they were honest, and said that you clearly need their services but they're not granted sufficient resources to help any but the most severely affected.

NHS and private diagnoses can be treated quite differently in some circumstances, unfortunately.

DS's school said diagnosis would open up more options for support as it helps evidence the need for them. But we're at the point where his referral has been expedited because of the problems he's having, maybe if things had been picked up on earlier it wouldn't have reached the point of school refusal (and two trips to A&E for me and the police being called out because of his meltdowns.)

I think OP is right to want a diagnosis - if things go to shit in a few years they'll be back on a three year waiting list if the private diagnosis isn't accepted.

@aldisquares Unfortunately that’s not the case, my son has a private diagnosis of ADHD whilst we’re waiting for the NHS assessment, the GP is happy to provide shared care and prescribes his medication monthly, but he still needs to have monitoring carried out privately as he doesn’t have an NHS diagnosis yet. So it costs me £150 every 3 months for his monitoring appointment.
Once we get the NHS diagnosis CAMHS will take over the monitoring and I will no longer have to pay. It’s crazy really.

YANBU
We have just started a private assessment for our 10 year old DS. I’m a GP and live where I work so same referral pathway. I know my son would be not be accepted for assessment on our local pathway because he masks well at school. Leading to massive meltdowns at home, saying he hates himself etc because he’s keeping a lid on it so much at school.

Our local pathway will only see children who demonstrate significant difficulties across all domains and where school have tried a graded response to this for at least 6 months (or 2 terms) and the child continues to struggle.
There are so many children who are ‘high functioning’ (I hate that term) at school so they don’t get seen. That doesn’t mean they don’t have an ASC or that they’re not struggling. And often then the present a few years down the line as burnt out teenagers.

Like much of the NHS, services have been so poorly funded for so long that they can only provide the bare minimum. I don’t blame the staff any more than it’s my fault for long GP waits in some areas. If there’s no money and no staff what can they do? But I do completely blame the governments from Tory austerity onwards for their deliberate strategy to run down NHS services, forcing patients to go private.

Get straight back onto them. This happened to us because our GP just wrote - needs assessed for asd/adhd without actually filiing in the form or sending any of the supporting evidence

@aldisquares
There is no official shared care between GPs and private providers. Medications such as those used to treat ADHD are specialist initiation only and GPs take over issuing prescriptions when the patient is stable, under formal agreements which set out the roles and responsibilities for all involved (usually around ongoing specialist input and review).
There is no way to ensure that appropriate private follow up will happen once GPs issue the prescription and it is the responsibility of the prescriber to ensure adequate assessment and follow up occurs. That is not within GPs remit or skill set.
As a practice we do it on a case by case basis depending on the provider involved, the clinical situation with any given patient and factors such as knowing the patients and families involved and having a good and clear relationship between all parties.

Are you saying that being academically able should prevent you from getting the help you need?

Cos there is no justification whatsoever for that, even if the system is screwed. It should be on need not ability if it's a health issue.

And as a health professional saying that services for children should be rationed, is appalling regardless of the constraints on the system.

I think anyone saying it should hang their heads in shame rather than hiding behind the 'well I had to go private myself' card as if it's justifiable.

No it's not. Do better.

@RedToothBrush would you like to share your suggestions for how we should 'do better' given the length of the waiting list and the funding and staffing levels we have available?

Yes your son is absolutely neurodivergent, he is Autistic and has ADHD. Doesn’t matter whether it was an NHS or a private diagnosis.

You can pay your private paediatrician to do a review and prescribe medication - they can then set up a “shared care agreement” with your NHS GP for repeat prescriptions. Doesn’t matter that they’ve previously refused to assess - irrelevant since you now have formal diagnoses.

Best of luck with everything! (Please don’t put him in ABA therapy or anything “behavioural”). Build a good relationship with school and the SENCO, he should go on their SEN register even if his needs aren’t many at the moment… year 7 and secondary transition will come around so fast and you may find he needs more support in that environment so best to get his needs identified and met soon as possible.

I am in a very very similar boat to you and I am terrified and enraged both for parents and children in this situation, but I think your anger at @VioletCharlotte is misplaced.

She is telling us as a professional in the field what the shitty reality is - she’s not defending it. She’s saying it’s a system short on cash and on staff, so the horrible fact is that they have to make assessment decisions somehow because they cannot currently provide the care necessary for the many, many children who need it.

It’s an awful situation, but she’s not defending it or saying that’s how it should be; she’s trying to explain it to help us navigate it better for our ND kids.

Tory governments doing their best to privatise healthcare for their own benefit and throwing hundreds of thousands of people under the bus deserve your anger. Not @VioletCharlotte.

The NHS will only agree to the take over of care if the private assessment was NICE guideline compliant. If it wasnt, then the NHS do not have to accept it as a confirmed diagnosis