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 ?

Not nessasery, I wasn't picked up with adhd as child even thou I had classic signs. My parents were told their were children worse so they would would get support. There is a lot of difference in how schools work with or don't work with parents. Yes in ideal world that happens but not every school.

My son was dx just after he turned 2 . I think you should look for another nursery

Sounds like the nursery have no idea what they're are talking about, if they are not supporting you pull him out, you can still go through with nhs assessment although like other have said a private assessment isn't always accepted as a definitive assessment and you won't be able to access nhs support also if you apply for an ehcp they may not accept a private diagnosis.
On another note if he is vastly delayed I would apply for an ehcp!

Hi OP, our boy is a similar age and we are expecting an ASD diagnosis. He is at pre school and it’s brilliant, I don’t think ‘nursery’ as a concept is the issue but just your particular one, could you find an alternative for him? In our area there is a nursery that somewhat specialises in ND children, may be worth looking in to. I do think having a ND child means you have to jump through continual hoops but if it helps him get the support he may need now or in the future, you are going to have to bite your tongue and do it I’m afraid.

but if the issue is not showing up at school, then they won't get a NHS diagnosis of ADHD anyway.

All these claims of ADHD that are not causing disabilities - ADHD is a serious major disability - and it shows up as a serious major disability - if it is not showing up as a serious major disability, then the child does not have this serious major disability.

It isn't like leukemia, or something that can be symptomless....

There is such a thing as masking. Which lots of girls do. I am currently waiting for an adhd assessment where I know I will be diagnosed. I've masked my whole life I'm 40!

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

This must be partly why so many ASD children - girls in particular - get no support at school. They don't present as 'difficult' behaviourally, and some schools evidently (according to this poster anyway) are happy to shove a perfectly valid diagnosis in a filing cabinet and ignore it.

The "bits of paper" that ASD girls "come with" are essential, precisely because they do not present as problematic at school. Infuriating and so typical of attitudes towards ND - it's all about how problematic things are for those around an ASD person, not about how difficult things are for the ASD person themselves.

Yet another post where you demonstrate lack of understanding.

I didn’t suggest ADHD is symptomless or that it isn’t a disability.

However, one can show signs while school still consider DC ‘fine’ and where schools insist there are no problems. One can also be achieving well academically but still be diagnosed. DC can be diagnosed when school says there are no problems.

Any good school most certainly takes note of a diagnosis, private or otherwise. And any existing documentation about how this presents in class, and strategies that should be employed, and what to avoid or watch out for.

I'm a teacher and I read this during handover. I consult with the previous class teacher and the SEN team. I wouldn't read the original diagnosis- unless it is new, then I do read the diagnosis report - as the SEN team will have done that. I will read the educational plan based on that diagnosis.

The idea that a private diagnosis is ignored is simply incorrect. If it is ignored - as at your current nursery - it's a sign to move your child out of that institution.

someone who is suffering from ADHD does not have the option of choosing not to show it at some times, but not others, same as any other disability, it is present at all times, or it isn't there. You dont choose to "mask" blindness, or cerebral palsy, or ADHD, or any other disabilty.

ADHD is real! talking about "masking" it for decades is part of the problem. This is why people dont beleive so many people who have it

The word "masking" refers to autism, and it isn't the pretence that autism isn't there at that moment, it is the expression of it.

I have a child with ASD (and other issues) and we had him diagnosed privately aged 5. Since had other assessments done at various points (when he was 9 and then again when he was 12) for various reasons - all privately. It has never been an issue for the school (although we are at an independent school so that might be different). His diagnoses are on his NHS records and were accepted without question by the GP.

His nursery, however, was a problem. Remember- they are not trained to diagnose ASD and really are in no position to say they that do not think he does have it. It is outside their remit. WE found however with the nursery we used that they were also dismissive of DCs many issues. At one point I raised the idea of whether they thought there was something else' going on with him other than normal challenging behaviour and the response was ; 'No, he's just wierd'. Literally. That is literally what they said.

Pulled him out of that nursery the same week and went to another that was attached to the private school he is in. Within a week we were pulled aside and it was gently suggested we seek a referral with an educational psychologist.

So I would suggest you seek out another nursery. Regardless of if you decide to put in aon a waiting list or not, you have lost faith in the nursery and resent how they have treated you. That is reason enough to change.

DD2 was always seen as 'fine' when she wasn't. Until she was so broken she couldn't mask any more. Instead of giving her what probably should have cost £3-4k in support, the LA now has to pay £95k per year for her specialist school. So short sighted.

Masking can also refer to ADHD. No one has said masking is the pretence ASD, ADHD or any other disability, is pretending it doesn’t exist.

Even without considering masking, sometimes while signs are present schools don’t see them for what they are. Hence some schools saying DC are ‘fine’ when they are anything but.

Private diagnoses are legitimate and although local authorities and schools may try to ignore them, it is not legal for them to and they usually back down if you threaten legal action. As somebody who has attended 4 ASD diagnoses, 2 private and 2 NHS, I can confirm that the private ones are much more comprehensive, take several hours longer and involve more highly trained diagnosticians. There should be no difference between what you can access with a private diagnosis and an NHS one.

Put your foot down with the nursery, they are not following the law. Ask the HV outright what the assessment is for and why she believes it is needed.

Not entirely true. DS has needed his bits of paper in order to be eligible for special access arrangements in exams. The paperwork and evidence required is robust. Its not just about problems they are presenting with.

2 is really young to get a diagnosis of ASD & they aren’t always accurate at this age. I’d 100% get the NHS assessment done. It will be helpful for future support, unless you’re worried they’ll disagree with the private assessment which they may do.

Hi, I can see where you are coming from. However, we recently had one of these and the NHS paediatrician basically rubber stamped the private diagnosis. He (and the GP) were both complimentary about the quality of it.

However, now we are "in the system" which is useful.

The mad thing of course is the charity that did the private assessment is staffed by moonlighting NHS paediatricians...

I have had adhd my whole life and a lot of my friends who have children diagnosed with autism/adhd at young age has also undiagnosed with autism/adhd . I also have triats of autism (possibly going for autism diagnosis to) and have a autistic daughter diagnosed young. It's very common parents of children diagnosed with autism/adhd find out them selves have the conditions so clearly if it's not being picked up as a child and they are diagnosed later in life. Means that clearly it is being less obvious. Doesn't mean they don't have it. Or it is less deserving or a diagnosis.

By the time you've "waited for the NHS" your child can be traumatised, your marriage broken and school in any "normal" format off the table.

That is the reality for far too many people.

The relevant NHS services weren't even taking referrals for the whole of 2020-1.

Seems odd you wouldn't do it tbh. Went thru it with one of ours no problems whatsoever and more skills learnt in dealing with it

But the schools don't have the funding to offer that support without an EHCP?

I have 32 children in my class. I have one LSA who works with a child as a 1:1, with very high need (can't be left alone). I can't use that LSA to support other children. I then have to split myself between 31 other children. I can make lots of adjustments to my classroom practice to accommodate a range of abilities and behaviour, and I do this. But I can't, for example, allow individuals or small groups or pairs of children to work in a different place to the classroom if they find the busy- ness overwhelming. I have no one to supervise them.

@murielstacey so why didn't they apply for one then? Or apply for higher needs funding? I have limited sympathy for schools who whine about lack of SEND resources when they won't actually ask for any help from the LA despite having the option to do so. Oh they will never get an EHCP so we no we won't apply, oh no we can't do that (how does allowing an anxious child have a cuddly toy in class cost anyone anything?) etc etc.

I do sympathise, I know it's hard, I know some schools genuinely do try their best and do everything they can to support or get the funding necessary (we had this experience at one school which 8s how I knew the other was so shit). Equally others don't do anything and simply try their best to offroll so said child becomes someone else's funding/resource 'problem'.

My son was struggling at school and suicidal. He wasn't a priority for CAMHS as he wasn't diagnosed. We went spent a year going to all the appointments to get him on the waiting list for diagnosis with community paediatrics and he was finally on it at age 9. We were told the waiting list was 2-3 years but that once he turned 11 he would be too old for a diagnosis with CP so he would then be moved to the waiting list for a diagnosis with CAMHS, which was also a 2-3 year wait. The time we had spent on the first waiting list would not be taken into account, he would be placed at the bottom of the list again. So we went private.

I am not rich, I am a single mother on benefits but if you think I was going to wait another 5 or 6 years before getting help for my son you're crazy! You're also an idiot if you think that there are teams of doctors willing to risk losing their licenses to practice and possible fraud charges to fake a diagnosis. I assume you have reported these people have you? Otherwise you could be considered to be complicit in their fraud with your inaction and filing cabinet full of evidence.

I just wanted to say that the NHS may not actually repeat the ADOS assessment specifically if they can see that it was done recently and by an appropriately qualified practitioner. I have worked in an NHS neurodevelopmental clinic and with our waiting lists we would not repeat an assessment unnecessarily. We would, however, ensure that a thorough holistic assessment was done adding to the private assessment if necessary. Some private assessments do absolutely meet gold and NHS standard and in this instance additional assessment may just be an interview and observation, consulting with others who know your son etc.

Lougle does know what she's talking about in terms of severe GDD and less 'noticeable' but severely life affecting ND. Because she's lived it.

You don't need an ASD (NHS or private) diagnosis to access SALT or OT. Your GP can refer. NHS OTs don't diagnose sensory processing disorder ime. Your child is too young for ADHD diagnosis either private or NHS. EHCP is needs based and independent diagnosis is accepted.

What support do you need that requires an NHS diagnosis of ASD? I suspect you will find that is not legal. Especially when the private diagnosis was made by an NHS doctor

Referral to the neuro team might be best for your child and you if there may be GDD (but you need to find out what the referral is) but regardless, based on what they routinely say, your nursery is crap. With no basis they are suggesting the diagnosis is wrong and the problem is really YOU.

You don't need this. For my child being autistic and misunderstood was traumatic, but for me, this was the hardest thing to deal with because I couldn't advocate for my child - in fact trying to do so was seen as the problem (with me).

The system totally failed DS1 who presented as fine til it wasn't. He hasn't left the house in years. DS2 was HE and now thriving at 6th form.

DS2 has a more obvious diagnosis (ASD and ADHD) but DS1 less obvious ASD severe social anxiety has more impact.