I don’t want ds autism test redone ? Can I refuse

[Seventhirtyanditsearly]

Ds has a diagnosis of ASD (private) as the waiting lists are so years and we were told his referral would be rejected anyway as he wasnt at any kind of nursery or school setting (?)
Since starting every time we discuss something and mention asd we are told ‘no he’s doing that because he’s little ‘ or ‘this is typical 2 year old behaviour it’s nothing else’

We knew there was something so we pushed ahead privately so we had the diagnosis as could then access more help while he’s still really young (2).

Now the nursery and HV have told us that they are referring to get a nhs neurodevelopment assessment (isn’t this an ASD assessment ?) we have declined saying he only just had one !!! They want it done I feel like they are querying his private diagnosis? (It was done in accordance with NICE guidelines so it’s valid)

What can I do ?

This is completely different but the same so bear with the story!

I had some symptoms and GP suggested I had a genetic disorder, referred me to the hospital. Referrals take about a year. I had a private test and yes, I have the genetic disorder. Got the hospital referral, told them I already knew I had it and wanted to go straight to treatment....they insisted I was tested again on the NHS, and I had to go back to my GP to do it. So the NHS did a completely unnecessary test, elongated the timescale, and refused to treat the condition unless they had "their own proof" I had it.

The tldr; is I think you will need an NHS test....you need to suck it up if you want NHS treatment.

They redid my dc's ADOS test when he was 7 and it definitely came back with the required score for a diagnosis. They did put interventions in place for him pre assessment. However, the diagnosis has given him additional help which was previously unavailable to him. Leave it for a year or two but definitely get him reassed.

do you have any idea how many private assessments schools are sent? Honestly, they are chucked around like confetti - no way we can read them , assess them, evaluate them so we file them and ignore them.

You went for a private ASD assessment? it is likely to be positive. You go for any other private assessment, it is likely to be positive. The NHS are offering you a proper neurodevelopment assessment, 1000x more valid

I agree a bit too early, so likely another one will be needed later, but you are the one who pushed for it to be early, so you cant really complain about that

Get the NHS one done .

But it is exactly the same structure and tests as an nhs assessment so I can’t see why it’s different ? The doctor we saw actually works for the nhs in our neighbouring borough doing ASD assessments ? I’m wondering can I say yes to the nhs referral but specify where we are referred to ? As if we see the same person I would feel reassured

I’d just do it. People have to wait years for this. If in the future you are in circumstances where you will need to have to revisit this, you’ll wish you had done it then.

He is very young indeed to have been diagnosed, surely having an NHS assessment adds weight to everything

I was going to say the same thing. I'd take the appointment but use it to go through the recent assessment and report and then see what NHS can offer in terms of support.

It's also not true about private assessments not being recognised by schools, NHS and EHCPs. My daughter got a private, very in depth assessment and diagnosis by the clinical lead for the NHS in a nearby but different county who also did private assessments. NHS accepted it, as did school and it was incorporated into her EHCP.

I would question what exactly they were going to assess and I wouldn't put my child through an additional ADOS to tick some unnecessary admin boxes. It might be they look at other things though so before refusing I'd want further details.
You are right that if the assessment was done according to NICE guidance by suitably qualified clinicians it has to be accepted. If not formally complain and push back. If you check your child's NHS medical record it probably is already listed as a diagnosis.
We went private for an ADHD assessment and it was accepted by CAMHS who then happily prescribed meds. We went on to get an EHCP and no one has ever questioned the private diagnosis - not once.
Personally I'd find a new nursery. Massive red flag that people who are in no way qualified to assess and diagnose are questioning a completely valid diagnosis. I couldn't be bothered with arguing with them - I'd move asap.

Put it like this:

When my dd was assessed, the door was immediately opened to allow psychologists CAHMS in straight away.

I asked my gp about getting a private one. She said l could but it was harder to access supports or therapies because the nhs one unlocked everything. It wasn’t impossible, but much harder. I know things like disability accept private ones, but an NHS one is the one that buys in the most things.

I was told this innumerable times on here, my gp told me this and yet suddenly people are saying im wrong. A psychologist saw my dd 3 months after her nhs assessment. How would l get that with a private one unless l paid to see one? The NHS is linked up ( well sometimes) if you get a private one, you just go to the bottom of the waiting list for any interventions.

My child was diagnosed at 2, she is very obvious and I am primarily school teacher so knew the signs. U know ur child and it sounds like u need to find another nursery. They do not sound supportive. Just because u r a professional childcarer doesn't mean u know about autism. My child didn't do any assessment as the pediatrician just said straight away that she is autistic ,non verbal and also has significant learning disability.

Like i said u know ur child and i would do the NHS assessment as its going to help in long run. It's true private diagnosis doesn't have same standing which is ridiculous as a lot are done by pediatricians who also do nhs .

Yes the GP accepted it and its now on ds medical records

The NHS used our private ADOS to diagnose DD.

Let them do it , it will probably just back up the assessment he already has. And stops the same treatment you are having in the future.
Also it's better to start the process now given how long it can take .
It will be easier in the long run with a nhs diagnosis. For future schools and such .
And as others have said he may get other diagnosis from the process. Mine also has sensory processing disorder. We didn't know this until the assessment. But has helped a lot

NHS funded treatment generally needs an NHS diagnosis. It was the same for me with fertility treatment - all needed retested from scratch.

Don't make this battle around the assessment about you v professionals. It sounds like that's what's happening and at the end of the day it's about your DC and getting them the support they need- which this assessment will contribute to.

Yes, take the assessment and pull him out of the nursery. That’s what I would do. I would also write in and complain to the nursery director regarding the manner in which their staff communicated with you. It sounds as though they did not handle the situation very professionally and could do with some staff training.

I would go ahead with the NHS assessment - rightly or wrongly it will smooth your path. If he is 2 now the first assessment process must have been done extremely young, and it is unusual for children to find the ADOS as distressing as you describe, which does make me wonder how skilled the staff carrying out the test were.

Is your real concern that an NHS assessment would not confirm a diagnosis of autism? With the symptoms you describe this is most unlikely, and the entire assessment process could be useful in terms of giving you more current information about your DS's development.

If you have concerns about the nursery and your relationship with them seems to have broken down, I would move your DS.

There’s no way I’d turn down the offer of an NHS assessment. I also had private for my dd to start with but when it comes to EHCP’s or extra funding you are going to find having the NHS diagnosis is essential. You’re just going to find you are giving yourself a lot more difficulty without it. I see where you’re coming from as it shouldn’t be like that, but it is and none of us can change the system at this present moment. They don’t necessarily have to do the full ados assessment in the actual NHS appointment, especially when they’ve got a lot of evidence from your private report. Ours just chatted through with us what was in the report, tried to interact with dd a little bit, did a couple of activities with her and that was it because we had so much information already. Nothing painful about it.
I highly doubt you’d ever be referred for assessment to prove your son doesn’t have asd, there’ll be a genuine reason you’ve been referred for assessment.
I would look at changing childcare settings if you don’t feel supported by nursery, they shouldn’t be making you feel like they don’t believe you.

fine, it is the NHS assessment that we would use, not the other one

I'd absolutely move nursery AND get the assessment done.

Whilst the private diagnosis should be enough you need to be planning for the next 5-10-15 years. Doing what you can now to smooth any annoying quibbles in a few years.

10 years ago DD had both NHS and private assessments and they've each been useful in their own ways.

Delaying until they've started preschool/school/move from KS1-KS2 etc just provides more stress.

Hi
Being a parent of a 14 year old boy and an 18 year old girl both with asd I didn't want to read and run!
After reading this thread it sounds like the nursery have no understanding and experience with asd children! If I was you I would definitely pull him out and be looking for a new nursery...take your time and speak to the nurseries about his diagnosis and find one who will meet his needs. my son changed primary school as his primary school didn't support him. He was continuously punished for behaviours resulting from the lack of support. At the time he was awaiting asd diagnosis however they were forever dismissing my concerns. I felt like they too were forever making excuses.... I actually made the asd referral from my GP as the school weren't really on board. However looking back now all the signs were there and it infuriates me that they weren't supporting!
A move to a new school was a completely different experience. It was the best thing for my son and for me! It was refreshing to have a senco that would listen and validate what I had to say. They were happy to put interventions in based on his need and shortly after he had the NHS diagnosis. Having a setting that I could trust would take good care of him made all the difference!
In my opinion the nursery is the problem here. I would definitely engage with the HV and go for the NHS assessment, meeting with the paediatrician will give you ongoing support and they will be able to refer to services/interventions that will help in the long term. It maybe that they can offer help with his sleep and medication when he's older if it continues to be a problem. It may not be that they want to redo the assessment but that's the way it feels due to the nursery's constant dismissal of your son having asd! Where I am it took over 4 years for my daughters diagnosis and unfortunately she had to go through hell mentally first (she presents very differently to my son). So a lot of signs were missed due to her struggling inwardly.
Take the appointment and see what the paediatrician has to say, as you know early intervention is key and can seriously improve outcomes.
Do you know any other parents of asd children? May be worth asking the HV If there's any support groups locally in your area.
When things were tough I found it really helpful being able to speak to other parents that just got it!
It made me feel less alone as I think unless someone is living it they can never truly understand!
Hope all goes well with whatever you decide and you can find a more appropriate setting for your son! (The staff at his nursery sound awful!) And need some training in asd!!!)

Please get the NHS assessment done. We went privately for our ds which gave us many answers, but schools etc still need the NHS results. This may then unlock additional support at school, funding and anything else.

It may be that a pediatrician just reads the existing report, meets DS briefly in clinic and NHS rubber-stamps it. They don't have to start from scratch.

If you want an EHCP before starting school, I would let them go ahead and do it.

But NHS diagnosis is not more valid in any way in OPs case. If it follows NICE guidelines and is done by a suitably qualified professional it is completely valid. Age is also irrelevant if you are assessed within the guidelines.
What makes you think you private diagnosis aren't as accurate? You aren't guaranteed a diagnosis going private- I know a child who missed the autism diagnosis by one point on a private ADOS. It's not up to schools to decide which diagnoses to accept as long as the clinician assessing is working within their remit and is appropriately registered.
It is well known that a dyslexia assessment centre has a high positive rate - but that is hardly surprising as no one spends £750 on an assessment if they aren't pretty positive their child is dyslexic!

Private assessments are not overly trusted by schools as some parents (not say you) push and push and send their kids to numerous private assessment doctors until they get the diagnosis they want. They essentially buy a diagnosis for their child.

@Nimbostratus100 if you work in a school your attitude is shocking.

If parents have the means to pay for a private diagnosis instead of waiting 4+ years for an NHS one (that's the wait in my area) why shouldn't they? Parents are only going to pay £££££ if they think it is highly likely that the result will be a diagnosis, you don't go for one on a whim.

Why wouldn't you take them seriously? I'm glad you don't work at my DDs school, they had adjustments put in place before we even had the report back despite the fact she masks and they don't see her struggles in the school environment as she shows no challenging behaviour and is highly gifted. The SENCOs read the report and put together her one page profile which we will discuss in a few weeks. Those adjustments have made a massive difference to her MH, self esteem and to her academic progress already.

Talking bollocks as usual. No doubt an expert in all this ND today. 🙄