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 ?

@Seventhirtyanditsearly
does it say anything apart from ASD?

this is what works out fairly for all children, this is why all schools work like this - nothing wrong with this attitude at all.

The children I support frequently dont even have parents, or if they do, they dont speak English, chances of parent arranging private assessment, exactly zero, ever.

There's a lot of misinformation on this thread. We had a private assessment, it was accepted by school, la and nhs. The nhs took them off the waiting list. There is no reason for them to refuse to accept it as long as it's done according to nice guidelines.

if the school and hv want it and they can fast track it
assuming the paediatricians are prepared to do it?
what is the worry?
there should be no stress to the assessment, no more stress than he gets from everyday life
and it might discover wider issues.
however i am surprised they are prepared to offer it

It works like this due to lack of money. But it depends on where you work. The school l worked at didn’t have a lot of abandoned children. We did have refugees or non English speakers, but they had to attend a course in English funded by the LEA before they joined school. They didn’t get support in class and were usually paired with a native speaker.

Meanwhile l was teaching textiles to a visually impaired child who was using a sewing machine with no support. So l was responsible for his health and safety whikst he was using a moving needle which he couldn’t see.

So it’s not always targeted and not always fair ime.

but either way, schools dont act on "diagnosis" - they act on the problems the child is presenting with

Ours didn't. Some schools are crap and aren't interested in supporting a child who doesn't cause disruption. Some won't believe a child has needs or requires support until a diagnosis is put in front of them, and even then some still remain crap. Then LAs moan about increases for ehcna and specialist places, which wouldn't be needed half the time if schools listened to parents and put necessary support in before the child became so anxious and traumatised they can't attend.

To address some wrongs on this thread about diagnosis NHSvsPrivate-

Private ASD assessments absolutely CAN be recognised by schools and other HCPs if they are done properly. Assessments that are carried out by a multidisciplinary team to NICE standards are fine. You must push back on those who say they are not. Who is a school teacher to say a team of medical professionals are wrong!?
My child has a diagnosis done privately by the psychiatrist and her team who actually heads up the local NHS service too. I just sent the diagnostic report to my GP and the school as fact.

My other child has a private ADHD diagnosis and I used this to get their medication prescribed by camhs via my GP. Paediatrician who diagnosed is also an NHS consultant. Choose your private professionals wisely

Secondly you do not need an NHS diagnosis for an EHCP. In fact you don't need any diagnosis at all. It's about evidencing the 'needs' of the child. So push back on this too and do a parental application if needed.

that is what i understood also @doubleshift

@Seventhirtyanditsearly I would do this:

1. Accept the neurodevelopmental referral. It's not a repeat ASD assessment. They're likely to do something like the Griffiths Developmental Assessment, which looks at all areas of development. That allows a diagnosis of 'global developmental delay' but also shows the relative strengths and difficulties. DD1, at 3, was shown to have an 18 month delay in social skills, but only 6-12 month delay in language, etc. She has gone on to have a Moderate Learning Difficulties diagnosis, but stayed with GDD until she was school age. The paed can also do a blood test for Fragile X syndrome (absolutely normal with any child with this presentation), and any other investigations that may uncover the underlying cause of your DS's difficulties.
2. Accept any support offered. Ask for a portage referral by the paediatrician. It is possible (area dependent) that you can be referred to OT for a sensory assessment, although a lot of areas aren't commissioning sensory profiles now, sadly.
3. Ask for an Education Health and Care Needs Assessment. Do it now. You can bullet point your reasons as you have listed above. That and the ASD diagnosis is more than enough to clear the thresholds of having/may have SEN and may need the support of a plan.
4. Push for a special school place. He may come on leaps and bounds, by which point you can choose to transfer out to mainstream, but it sounds like he needs a setting where his presentation is their 'bread and butter'. All the things you would need to push for in an EHCP is stuff that the special school will just weave into their school day.

Please don't feel threatened by the referral for a ND assessment. It really isn't to undo what has been done. TBH, it's highly unlikely that with your description above, any assessment wouldn't come back as diagnostic for ASD. What you may be missing is co-morbid conditions, which will help you.

DD1 started with a brain malformation (CT was normal, MRI not), epilepsy, and GDD. Over the years she has lost the epilepsy, but gained ASD and severe speech and language disorder. She has transferred Global Developmental Delay to Moderate Learning Disability. She is likely to pick up an ADHD diagnosis soon. She is no different to how she was when she was young, but it gets harder to explain away the lack of attention and ability to sit now that she is almost 18!

I would definitely go ahead with this. Your DC is quite delayed based on what you’re saying so I’d be wanting to access as much support as possible from different professionals. Also, you mention wanting early intervention and support and I think this is your way to get it. Not to say that your private assessment wasn’t thorough, but it is possible that your son could have other ND traits which will develop as he gets older and could lead to diagnosis of other disorders.
I think you need to take a step back, think long term here and engage with the process. This could be the catalyst for all the support from the first day he starts school and getting him into the correct setting, if mainstream isn’t suitable.

So your school is a bit shit then? What a thing to admit.

The one private asd assessment we've had was far more thorough than any nhs assessments experienced in our family. In fact my recent nhs asd assessment was done by a mental health nurse. Hardly multidisciplinary or gold standard. One child on nhs had salt and a paediatrician, probably 3 hrs assessment max. Private assessment involved salt, ot and a psychologist and the assessment was a good 5/6 hrs.

What I would also do is dial back referring to his autistic needs at nursery. You know why it is but it's causing friction, so use words they'll accept so that your DS is the focus and not his ASD.

' In families were a child has genuine ADHD, and a parent also does, then the situation that child is in can be fairly chaotic. Unlike rich, privileged middle class sufferers and parents, scraping around for evidence of difficulties, and getting assessments done.'

This is the attitude I'm referring to. Just because a family has money doesn't nessasery make their family life less chaotic . It just gets hidden easier. And surely all them families 'wasting their money on private diagnosis' are free up the NHS ones. Imagine the waiting lists if we get rid of private diagnosis. Private diagnosis definitely has a place. And yes it's a privilege to be able to get one.

Could you elaborate on how the ones causing the most concern don’t present obviously?

My child was diagnosed at 2 and if I didn't feel I could refer to the autistic needs then I wouldn't be using them as a nursery. It very much sounds like they are not the right fit for the child. If the mother has to refrain from using the correct language to not upset them. Then she needs to find a nursery who is understanding and will be able to support his needs.

yes, you are right, of course you are right, if schools were not so chronically underfunded, there wouldn't be any issue

I mean the ones who are quiet or dreamy. Or don’t cause obvious problems. Teachers don’t have time to pick up
on every kid, they just battle for survival.

e.g daydreaming is symptomatic of ADHD in girls. But they just seem quiet. So no one picks up on it.

My own Dd, terrified of dress up days, friendship problems. Quiet and compliant. No one picked up on it.

Other ADHD kids who don’t have anything obvious wrong.

Learning difficulties are easier to pick up than subtle ND difficulties.

If a parent has concerns they can contact the SENCO and ask for a school based assessment of their working, this is n't a diagnosis in any way, just lists the problem areas, etc, and highlights them to the teacher.

I dont think there is such a thing as "an ADHD kid who doesn't have anything obviously wrong" though.

It will show up in hyperactivity, or in attention difficulties, which will lead to massive underachievement - and if it doesn't show up, then it is borderline, at most.

I have known some of the "dreamy" ones, can be very quiet and still in lessons, but their difficulty shows up very obviously in work. And a few minutes with the SENCO makes it obvious.

Agree with this. Absolutely no way would I leave my autistic child at this nursery. I have seen the damage done when nursery & school are unsupportive, my eldest has school related trauma and EBSA.

Really? This is really ignorant.

Are you saying private doctors are more unprofessional?

My school has taken several private assessments as long at it follows NICE guidelines.

Yes OP pipe down about your child's disability

I just know I used to teach about 450 kids a week. Seeing them once a week it was impossible to pick up on anything.

I dont think there is such a thing as "an ADHD kid who doesn't have anything obviously wrong" though.

It will show up in hyperactivity, or in attention difficulties, which will lead to massive underachievement - and if it doesn't show up, then it is borderline, at most.

This demonstrates such a poor understanding, and is exactly why so many DC are said to be ‘fine’ at school when they are anything but.

Every time I see a thread about private diagnosis you can guarantee @Nimbostratus100 is on it shouting the loudest whilst knowing fuck all.

Embarrassing really.

Any issue really. I am worried for them.

No, but instead of arguing about whether it's an autistic meltdown or a toddler tantrum, the fact that he's distressed can be acknowledged.

Ultimately, this setting isn't going to meet his needs. I have been a parent of children with SEN for almost 18 years. I've been there. Pick your battles.