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 ?

Sorry to add - they’ve said the paediatrician will see him asap to get this done at a community setting ? Whereas before we were told it’s years and years for these appointments??

Why would you not want your DC to be assessed? I don’t trust private ASC assessments. They tend to not be done correctly and part of the gold standard assessment process is not completed. I know that the NHS tend to redo them. My friends child took 18 mths for a confirmation of diagnosis when at nursery , they did multiple assessments, observed at nursery etc etc and a MDT discussion before diagnosis.

you may find with a wider form of assessment your DC has additional needs and the nursery can better support them . I wouldn’t dismiss it

He’s been assessed and was done to NICE guidelines so it’s the exact same test. It was also very very difficult for ds (the ADOS was really hard for him as he doesn’t do well with unfamiliar places and people so I don’t feel it’s fair to redo it)

I wanted referrals for further support now we have a diagnosis to have early intervention but they want the assessment redone ?!

Although ds wasn’t at a nursery we were attending groups so we had observations done too - it was a comprehensive’gold standard ‘ assessment

What is the HV's reason for wanting this assessment done by the NHS?

What is your reason for not wanting to go ahead?

As long as the private assessment was done according to NICE guidelines and by qualified, experienced professionals, there is no reason for the LA/NHS to dispute the private diagnosis.

That being said, unless you think it would be traumatic for your child to go through the assessment process again, I would go ahead as it could save you a lot of arguing further down the line. The NHS professionals must consider all relevant advice including your private report.

When we were waiting for DS's diagnosis we considered going private to speed up the wait but we were told that most schools won't accept a private diagnosis so we decided to wait for the NHS one. Unfortunately, it seems to access the support they will only accept NHS diagnosis so you will most likely have to go through it if your child needs additional support or is likely to in future.

Yes I think it will be traumatic for ds as it was traumatic having the ADOS . We just want to now move forward with therapies and courses (that you needed a diagnosis to take part in)

The HV and nursery seem to be saying a lot that certain behaviours are normal 2 years behaviours and not ASD so I can’t seem to have any conversations around ds needs and how to manage them as it’s constantly dismissed . They are saying he needs a neurodevelopmental assessment by an nhs community paediatrician.

For the private assessment we had observations done at groups (he hadn’t stated nursery at that point) , an interview about development history etc, an ADI interview, an ADOS test

The nursery had asked to get the HV in so they’ve had contact as I agreed to that as though it was part of the support process but they are now saying to get this assessment done and it feels like everytime I mention ASD in relation to anything the conversation is shut down ??

YABU
private assessments are not usually recognised by schools, health and other services. You'd be mad to turn down going on the waiting list for an assessment and not doing him any favours.
it's also true that developmental issues or neurodivergent presentations can change over childhood so what has been assessed as autism at 2 might not actually be autism.

I suppose it depends on what the second assessment is looking for, other neuro diverse conditions suchas Adhd, dyslexia, dyspraxia, sensory processing disorder often go hand in hand with ASD so if it was a holistic assessment looking at all of these areas then it might be worth doing. Otherwise you don't really have to lay much attention to the HV and nursery, you have your diagnosis. Lots of ASD behaviours are developmentally normal and copable for the child and parent but it's when those quirks are in excess and causing difficulty that you need a diagnosis.

My DDs quirks were fine until she hit Secondary school age and then they caused massive issues. DD would never have hit the bar for her ASD assessment through the NHS as she does not show challenging behaviour, doesn't have learning difficulties and isn't an issue at school. None of those things change the fact that she does indeed meets the criteria for ASD in terms of requiring sameness, sensory processing issues particularly around noise and is socially 'off' and quirky. The validation for her that the private diagnosis brought her is priceless.

As for private diagnosis not being as good as NHS ones, most private clinics also do NHS work and the private diagnosis is more in depth with more time given to the individual, in my experience at least.

maybe wait until he's a bit older and give him the option for the test so he can decide for himself when and if to take it

The private assessment was done exactly as an nhs one would we researched providers who do the gold standard and whose reports have been accepted in our borough

Ds is autistic and I feel the nursery especially are minimising things and dismissing any concerns I have

An NHS assessment opens doors. A private one doesn’t always.

My Dd has hit 16 and refused to go to school. We are applying for an ECHP. I don’t think a private assessment would even be considered for one of these.

We have heard so often about early intervention before age 5 improving outcome’s significantly so really want to start on things that will help.

Im honestly at the point of pulling him out of nursery and using his DLA for groups and private SALT etc

It might have been done to NICE guidelines but an NHS one is the one that counts and enables you to access things.

Two is very early for an asd diagnosis unless your ds is very obviously delayed. In all honesty it would be better to just get it done. Refusing makes it look like you are concerned that they will disagree with the diagnosis.

It is absolutely fair enough that, for NHS treatment, you need an NHS diagnosis.

We had a similar issue - the local authority support in school for ADHD for DS1 was only available with a CAMHS diagnosis. This did mean a protracted wait but worth it in the end. You need the school on your side for the process though - primary were hopeless but secondary sorted it!

I would go with the NHS assessment. It’s clear that the nursery and HV are thinking differently to you and will be barriers to him accessing the support you are seeking. The NHS assessment will get you all on the same page whatever the outcome is.

It’s hard to get it across in a thread but I really feel the nursery have been speaking to me in such an unpleasant tone and just stopping me mentioning ds asd related issues they literally will say ‘no hang on - that’s normal toddler behaviour’ or ‘not everything is autism related’ or ‘he’s doing that (stimming or sensory seeking behaviour) because he’s little’

He had a meltdown this week where he was distressed for 3 hours because they had changed a display that he loved and they said ‘lots of tantrums today wasn’t a good day’ I explained it was a meltdown due to change and they said ‘it isn’t always autism you know you need to work on accepting that two year olds have tantrums’

Yes he is very delayed we get high rate dla for him . I think I may be better off using that for therapy where I won’t get judged as the nursery and nhs route seems to be causing me so much stress

I honestly after last week want to pull him out, re start our groups and access some private therapy as we’ve been saving his dla so i have that to use

Should one diagnosis be enough? Yes.
Is it? Not in your case.
What will it cost? One bad day for your DS.
What will not getting it cost? A bad day everyday at childcare and school for DS at best, trauma at worse.
What will it give? Nursery staff acceptance, better outcomes - exactly the reason you got the first diagnosis.

I totally get where you are coming from, but bottom line is if you want DS to get the support you will have to jump through this one hoop.

Agree with this. You need to get the NHS assessment if you want an EHC further down the line.

Sounds like you are inclined to stick with what you have because the nursery have not been handling things well and have got your back up.

You are at risk of cutting off your nose to spite your face, because although the nursery might not be great, what they are offering you might be vital for getting your DS support later. Don’t turn it down just because the nursery is currently failing to understand his behaviour- this isn’t about them.

The assessment report was all we sent in with our dla claim form and they have zero issues with it. I think it’s best I just use that to get therapy now as I know that the sooner we start the better the outcomes for ds

I also can’t cope with the criticism I feel I’m getting from nursery when I’m just trying to help ds it’s really got to me this week he’s only been there since January and it’s increased stress levels hugely I don’t feel we are supported as a family I feel they are just taking any opportunity to criticise what I bring up

Sometimes you just have to jump through the hoops. Let them do the referral, he’ll be diagnosed again. Unfortunately this won’t be the only time you’re frustrated trying to advocate for your DS, sen provision are shite. Sorry to sound harsh, but this is the reality