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 ?

I meant it enables you to access all the NHS therapies. He’s only little. You’ll need more input as he gets older.

From your last post it's clear the nursery aren't supportive, I feel that's your main issue tbh. Being told a 3 hr meltdown is typical toddler behaviour must be very frustrating. I know your DC doesn't like change but is it worth considering a different nursery? Or at least looking at some others?

As for the assessment, a neurodevelopmental assessment in my trust wouldn't be an ados, it would be an initial step on the pathway - your chance to explain everything to a paediatrician. I would go and see what they say. They usually observe the child but if the child isn't willing to engage, they don't push it. The next step could be an ADOS but different trusts have different pathways.

Now the nursery and HV have told us that they are referring to get a nhs neurodevelopment assessment (isn’t this an ASD assessment ?)

It's not an ASD assessment no. It will be an overall assessment - the initial thing that wound lead to and ASD/ADHD etc assessment. They will take everything into consideration. You are mad to turn it down but I'm very surprised nobody told you what this is.

I think you’d be mad to turn it down too. It has much more clout than a private one.

Are you worried the assessment won't find that he is autistic? I would definitely use the NHS one, it'll be much easier to get support for DS with it.

Yes I do feel that maybe there was a reason this nursery was the only one with a space . The HV had kept saying we have to get him into a setting so I took the first place I could get as every other one was full but it’s not a supportive environment and he seems to be left to his own devices there’s not as much stimulation as I was hoping for him . They say he doesn’t like being approached or touched at all so they let him sit alone and the reason for the meltdown was the display that he sat by each day and just touched as it had different fabrics then it got taken down and he had a meltdown and they just roll their eyes at me and saying it’s toddler tantrums

NHS diagnostic reports are NOT mandatory for an EHCP and they can also be accepted by schools. Some people assume with a private assessment you are paying for the diagnosis, it is misinformation; you are paying for the time of the experts and to frankly jump the queue.

As long as the assessment has been completed by trained professionals and in accordance with NICE guidelines, the diagnosis is valid. My niece was assessed privately via a clinic who our NHS trust use for their own assessments. The private diagnosis is no less valid than the NHS one she would have received three years later.

However OP, your son is very young; it is possible that the HV would like the assessment repeated to ensure his needs are being fully identified rather than querying the validity of diagnosis. It would be beneficial for you in the long term to have the re assessment done, especially if they are offering an assessment quickly.

You do know a lot of the private companies are exactly the same people/companies who do the NHS diagnoses? Paying privately just means you skip the queue

I think if they actually spoke to me like an equal and not some kind of liar about my own child (because I’ll be honest that’s what they are making me feel like they are turning everything I say into an issue if I say he’s had a bad night due to something asd related they say ‘no he just had a bad dream’ if I say about his food issues they say ‘come on mum - you just need to offer a better variety of foods and make the plate interesting !’ Or that a meltdown is just a tantrum and I was told I use exaggerating language.

If they explained exactly what this assessment is and were kind and supportive I’d feel so much better. They’ve made me stressed and defensive . I’m trying to advocate for ds and I’m doing so I feel almost bullied. I really think with a lot of things they’ve said that I don’t want to keep him there , even typing it out here has made me feel more convinced it’s not a good fit for us at all. They haven’t approached it sensitively at all

I'd say yes to the referral, then when you actually have an appointment with the pediatrician you can show them your private assessment, and rather than push for reassessment, they will probably look at whether any other comorbidies need to be assessed as well.

With regard to therapies, neither private or NHS diagnosis automatically open the door to therapies, what therapies do you feel your son needs? It normally helps to have a really clean idea of what support you feel is needed.

With such a young assessment, is mainstream education appropriate? Is your ds non verbal? Are they showing signs of having a learning disability as well as autism? Which milestones have they missed?

don’t trust private ASC assessments. They tend to not be done correctly and part of the gold standard assessment process is not completed.

That is simply not true. I had an adult ASD assessment that was considered 'gold standard' and complied with NICE guidelines. The NHS accepted it without question and the diagnosis was added to my records.

My Ds had an NHS autsim assessment and diagnosis, no ADOS was involved and it was nowhere near as detailed as my private one.

Op I would probably go with an NHS assessment, as it's always useful to have as many professionals involved as possible. Especially around support in education and EHCPs. It was NHS healthcare professionals that helped us secure Ds's specialist placement when our LA refused it.

This isn't really true at all.

What are his delays @Seventhirtyanditsearly ?

Are they developmental delays and/or autistic traits?

Pull him out of that nursery.

Then do the nhs assessment.

Lots of people with asd get dual diagnoses so given the process will take 2 years a comorbid condition may show up by then.

The more I think and the more I read back over this thread the more I feel that it’s the nursery that’s the issue . They are the ones who have spoken to me so dismissively

I think I’m going to pull him out and re start groups etc. Then I’ll chat to the HV about going forward and what to do. I can’t think straight when I feel like I’ve been had a go at every day last week and I think that’s actually the main problem

I want to be gentle but I think you need to listen to them, get the nhs assessment, but also listen to the nursery when they say behaviour is normal for age. 2 year olds are legendary for tantrums.

Is this your first child? My eldest had significant delays in 5 of the 6 markers they looked at, she was diagnosed at 2 year 9 months so I completely understand your concern but my youngest had the same profile at 2 yet by 3 years developed out of the diagnosis if that makes sense, she isn't autistic

I have heard lots and lots of the NHS accepting private diagnoses for adults but not for children. You don't have to be very cynical to think that this may be because the adult only wants their diagnosis recorded whereas a diagnosis for a child opens all sorts of doors to further, expensive support and services. If the resources that there should be for those diagnosed as adults were in place then I think there would be a lot more 'gate keeping' there, too.

Look if I’m being completely honest what I can see here is that there’s a chance your DS has been diagnosed too early. At two, ASD should only be diagnosed if it’s startlingly obvious and to professionals in the nursery setting it doesn’t seem to be.

Is there a chance you don’t want the assessment because you think the NHS doctors may not come to the same conclusion because that looks like a possibility here.

You’ve been offered to be fast tracked, get it done and that closes the question of diagnosis forever and the nursery will finally take you seriously.

If you say no that will not work out in your favour when you ask him for help further along the line - it doesn’t matter how you much you explain how legit his assessment was, that’s just the way it is. So get the NHS assessment and start getting your son the help he needs, if he needs it.

What are the markers do you remember off hand?

Non verbal and was late to sit , didn’t ever crawl and walked late . Feeding issues (can’t tolerate many textures - vomits )

Cant stand loud noise
can’t stand too light or too dark
repetitive play (lines everything up ) but aside from that doesn’t play with any toys prefers to just touch sensory things like fabrics, carpets (will run hands along them for hours)
hates being touched
hand flapping/stimming
chews on things (wood , metal , furniture etc)
Cant tolerate hair being touched , teeth brushed etc
makes repetitive sounds
Doesn’t sleep well at all wakes every 30 mins like he can’t ever get into a deep sleep
Cant cope with any change to routine at all

These assessments are so hard to get an appointment for that nursery and HV wouldn’t be able to refer you in order to rule out asd. My friend has been battling for years for paediatrics to accept a referral for her son even though school are in full support of it.

A full NHS assessment will be invaluable to your son as he gets older. It’s frustrating but a lot of schools, etc only accept an NHS assessment and it may also flag up other areas he needs support in.

Wow I really feel for you. While there will be a lot of things that 2 year olds will do regardless (including tantrums for a while) I do feel 3 hours meltdown over a change of display is really really long and seems very hyper focused. Not that same as a favourite toy being taking way & so I think most 2 year olds could be distracted with a favourite toy or so.
having said that, an NHS diagnosis would give more weight at school setting etc so maybe give it a chance? Or given that he is younger than typical diagnosis could you ask for a deferred nhs diagnosis? Say when he’s 3/4?

I would go ahead with the referral.

NHS doctors aren't going to make work for themselves if they don't need to. The community paediatrician will ask for all the details of the private assessment, request the report, observation notes, ADOS score sheet etc and if it has been done properly will probably not actually repeat all the tests but will use it as collateral information in making their diagnosis.

The nursery sounds crap, but that doesn't mean that getting your DS into the NHS system will be a waste of time. You can do that alongside finding an alternative placement for your son.

Op I don't think this nursery is the right fit for you and your son they sound very dismissive and frankly quite patronizing "make the plate interest" I feel quite cross on your behalf and I understand your frustration as I've been there with my ds as well, people minimizing and making me feel like I'm over reacting, yes two is very young but bottom line you know your child better than anyone else, I like you knew from a very early age that ds was neourodivergent and listened to my instincts. We're in Ireland and the public diagnosis process is crazy he got his diagnosis 2 years ago with the psychologist reiterating that his sensory needs were huge and we needed an ot as a matter of urgency he's only just got one last week! I wish we had gone private tbh anyway going of track a bit there sorry. Keep advocating for your son and if your not happy with the nursery than maybe another one will be more supportive, not that you should have to since you already went private but if having the assessment will give you better access to support for ds than perhaps it's worth thinking about. Best wishes to you both I know how frustrating it all is when you aren't taken seriously x

No he’s not my first he’s my third.

My older two had epic ‘terrible twos’ they had MASSIVE tantrums but they could come out of it in seconds (eg if they got what they wanted or if they got distracted or we explained ) this is not the case with ds at all he’s completely different. His meltdowns can last hours and hours and there’s no distracting or comforting or reasoning possible