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 ?

You’re talking bollocks.

They have to consider private reports there is no choice in the matter. Some la’s use private reports as an excuse not to private support, or you can have an nhs diagnosis and still be turned down anyway as they’ll come back with any one of 101 other reasons to turn down. If you go to tribunal private reports are accepted

Not to provide support thst should say

A neurodevelopmental assessment is not the same as a diagnosis. An assessment for a child without a diagnosis might lead to a referral for a diagnosis but wouldn't be sufficient by itself. Autism is as you know a spectrum condition and every autistic person has a different profile on that spectrum. Having a diagnosis isn't the same as having a good understanding of the particular profile and needs of a person or what support would be most beneficial, and these are likely to develop significantly over a person's life. Don't decline the assessment, so long as it can take place in a familiar setting it won't do any harm, and will hopefully help the nursery to know better what kind of support to give.

I am a primary teacher and parent of a neurodiverse child. I know it seems ridiculous but an NHS diagnosis will be incredibly important for you both as you start to navigate educational provision and support later on through his schooling career. Things that you think are manageable now might not be, things he doesn’t find distressing now, might be later etc. If they are offering to get him care now, just do it. The nursery sound like they have a poor attitude (the tantrums thing) but the HVs do not say this without good reason.

The threshold for DLA is much, much lower than things like an EHCP…

your school will be dealing with the student they have in front of them, not the bits of paper raining down on them from private assessors, as will every school.

What you need to understand is that it is only a certain class of parent that gets a private assessment done, or even an NHS one.

I have said this before on threads like this. 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.. the children who suffer the worst from ADHD, and have a parent who also suffers, are less likely to have employed, wealthy parents with income to waste of private assessments. They are more likely to come from homes with divorce, unemployment, homelessness, drug use, parents in prison, etc.

ADHD can be a devastating disability, which has a massive impact on life chances - the worse the symptoms, the more the impact on life chances, the less a parent is able to seek an assessment for their child

These are the children that need the most support, and are the least likely to have a diagnosis, that is why NO SCHOOL bases support on diagnosis - because the children who have the worst problems are going to be least likely to have a diagnosis.

So school support is based on the problems and symptoms that a child is presenting with, not the bits of paper they come with.

I am sure you can see how this makes sense.

My DGS had to have NHS assessments despite having had private ones done. The local authority would not accept the private ones so he went through it all again BUT he was pushed further up the queue because he had private assessments saying what his needs were. The school told my DS the local authority were worried they'd be sued for not providing the right support!
He's had some support but not all because providing full support would cost them too much money! My DGS has been in school a maximum of 3 months since September due to exclusions so don't rely on the local authority!

Nursery sounds rubbish. I'm not sure if my DS is autistic, he shows a few signs but not loads, but his preschool are perfectly happy to use strategies for autistic children if they help him and have taken my concerns seriously. The paediatrician appointment could be useful though and could consider other diagnoses as well. If you take him out of nursery I would still attend that. You can explain why you don't want him to do the ADOS again.

My child slipped under the radar at school though ( female). She just presents as quiet in class.

It didn’t become apparent until much older that she was scared to speak to teachers and couldn’t do group work. So no support was put in place.

They put support in after the diagnosis. But it’s too late, she won’t go to school.

@Nimbostratus100

Unlike rich, privileged middle class sufferers and parents, scraping around for evidence of difficulties, and getting assessments done.. t

This is the disgusting attitude I was referring

I agree with previous posters, take him out of nursery. It sounds like he isn't gaining anything from being there, if they leave him to sit on his own by the display.

I wouldn't want one of my children in a place where the staff are unable to listen to the person who knows the child best.

I'm wondering if they've taken a dislike to you, and that is the driver for this. Perhaps your manner and confidence in advocating for your son has got their backs up.

Whatever the reason, its causing you distress and he isn't benefitting. You're his mum, and you know what his behaviour is communicating.

It sounds to me like he would benefit from being with you and attending groups. He doesn't need to be in a nursery, esp one where they think they know it all.

My Eldest didn't go to school until age 5, we went to groups and met up with friends. We did days out and experienced life. She's autistic, but "high functioning". Diagnosis was age 16, primary school were telling me she was "quirky".

I would opt for the NHS assessment as although it feels like a box ticking nonsense it will mean he can access the support he needs.

In my area there are parenting classes for ASD/ADHD that you can access without diagnosis. Via the non statutory support offered (team around the family).

I would also read up and start using intensive interaction with him. It's such a bonding experience and amazing to see the results.

https://www.sense.org.uk/information-and-advice/communication/intensive-interaction/

it is very clear that there is a negative correlation between the severity of the symptoms and the likelihood of getting a private assessment - there is a very clear positive correlation between the privilege in the family, and the likelihood of getting a private assessment

dont waste your money - get an NHS assessment if you need one

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

she had no difficulties at school and didn't need any intervention at all, went on to high marks in GCSE and A levels
As you can see from Nimbo’s own words, children can’t possibly be ND if they’re head down and get good grades you see.

That can be the case on occasions however I have had people arrive with an 'opinion' from a private assessments. Or only part of the assessment was completed as they only took history from parents. So it really does depend on who conducts the assessment. In the OP case they want to conduct a wider global assessment which would make sense as other areas of need may be identified

I've just thought when my friend went private and I went nhs , she still went for her nhs appointment and they just agreed with the private diagnosis.

To be honest I have a DC in private primary and the sheer number of wealthy parents booking there DC for either private Dyslexia, ADHD or ASC assessments is shocking, All because their DC didn't get into their chosen school via the 7+.
So there must be something wrong with them. So it does happen sadly

@Nimbostratus100

I've got ADHD, and was diagnosed late as an adult. My child has ASD, NHS diagnosed.I paid for my ADHD diagnosis.

I am chaotic/divorced/working in jobs below my ability/had a breakdown every few years until medicated for ADHD.

I'm a single working mother getting top up benefits. Some people scrimp and for the money for private assessment.

Schools don't recognise the ones who need help, they recognise the ones who are disruptive and causing problems. They don't recognise the quiet, distressed and school refusing ones. Or see the impact of the after school behaviour.

Shitty attitudes cause these children and young people a huge amount of damage. Disgusting way to think about people who are seeking help for their children.

@Nimbostratus100

it is very clear that there is a negative correlation between the severity of the symptoms and the likelihood of getting a private assessment - there is a very clear positive correlation between the privilege in the family, and the likelihood of getting a private assessment

But, part of the assessment process involves consulting school

In my experience, that private diagnosis will be an incredible asset.

You may never need an NHS diagnosis, though you will likely need a second diagnosis, or at least repeated needs assessments, as ds gets older and goes through school. A diagnosis at such a young age will likely need repeating at some point, but I think you are right to push that date back - and you can do that via the NHS. The fact that you already have a diagnosis will speed things up and take away doubt and open doors.

It also means that you can start advocating for ds now. And that will never stop, I'm sorry. You will be dealing with ignorant childcare workers and teachers for years.

Yes, get him out of that nursery. Find one that understands autism and can explain how they will apply his diagnosis in daily interactions.

Don't feel the need to constantly defend the diagnosis ("You say he's autistic? What symptoms did he display, huh? What milestones did he miss?"), except to professionals involved in his care and education.

If your HV is offering an appointment with a paediatrician, I'd take it. Not so she can refer for another diagnosis, but so she can help explain the system and what is available to help ds.

Hope you find a happy fit for ds in a nursery!

you are right that sometimes disruptive behaviour is noticed first, but that shouldn't happen, all children who are struggling should be identified. I think what youve achieved sounds amazing, and it sounds like you are one of those who buck the trend. I hope it all works out well for you and your child

As soon as he gets too old for early years interventions the waiting times for everything become even longer.
If it were me I’d take everything offered at this point.

This is true - anything you can get completed before he turns 5 will be quicker and have a clearer process.

it shouldnt be a stressful assessment,

Unlike rich, privileged middle class sufferers and parents, scraping around for evidence of difficulties, and getting assessments done..

This is dreadful. All children need support, but it’s not the fault of the middle class parents if they don’t get them. In fact if middle class parents are paying, then it frees up more nhs space for the rest.

I taught secondary for 26 years. Some chikdren have obviuos problems and some don’t. The ones causing the most concern are the ones who don’t present obviuosly.

My ds age 7 could talk with advanced vocabulary. He could hardly write but read well, but was near bottom of the class. No one picked up on this classic dyslexia symptom. He got an assessment. He was in the top 2% in terms of ability (G and T)But had bad dyslexia. His abilitywas disguising his dyslexia and vice versa.

No one picked up on DD at all.

So ime experience of 2 kids in the state system and being a teacher is no one picks up on the subtle ones, but they always pick up on the ones who display issues. So support is actually rarely put in place, as the less obvious don’t cause disruption.

I can spell obvious really!

There is so much wrong with this attitude 😒 🙄