Private & Nhs Dx

[OMGGG]

im wondering if anyone has ever got a private dx that hasnt been agreed by Nhs. My ds has private dx of hfa but im sure the Paed although a little unclear as yet is doubtful. i think the main reason for her doubts is that school say there are no major concerns.
ds is on waiting list for cdac.
im pretty sure during a tel conversation with Paed she mentioned something about a 'genuine diagnosis' ecen tbough his autism cut off scores are high.
im going to ask her to clarify but wondered if anyone else had had got a private dx and then struggled with nhs later down the line

also the Paed rightly said that what she cant fathom autism is in all settings which makes me thinks its school that are not agreeing as i know she has spoken to sch senco . i fear she is thinking im a bad parent and thsts whst the issue really is.
i told her about ds struggling to settle to sleep for hours and sge said that i must be firm and explain to him its bed time and he must go to sleep. as if i dont do that...does she think im stupid. she should try spending four hours a night trying to calm ds

Ds's first school were 'opposing' his diagnosis and trying to hinder the process.

Luckily for us, ds was being assessed by the CDC and paed we saw specialised in autism and was part of the assessment team.

A dx should be a dx, however if you are seeing a paed you could ask for one that specialises in ASD or a least a senior paed. Prior to seeing the lovely specialist, who told me within about 15 minutes of meeting ds that he thought he had ASD, we had seen countless comm paed's who didn't know their arse from their elbow and one even told me 'don't let anyone tell you your son has ASD'!

ok we are seeing a community Paed. im not sure if she specialises in ASD but she deals with ASD children on a regular basis.

i spoke to her again this morning and she told me that sch senco said that ds is NOT autistic

Paed also agreed that school havr swayed her view.

she also said that she agrees ds ticks lots of boxes and shows signs that could be related to autism but it could br something else. ie slow social development , maturity and confidence. yes could be due to autism but could not be. i pointed out all of the other signs to which she said its possible but she feels tommy is just a young boy and stated that he needs lots of love and praise and confidence building. i think she thinks it could be my fault that ds has issues and not autism. she said her persoanl view is that he is a shy boy that lacks self esteem and is delayed in social development that he makes eye contact and wants friends.

he is having an ados via nhs.

she kept going on about not trying to label my ds i told her i needed to be clear so i knew exactly what i was dealing with if tthat involves getting a label then so be it.
i dont want him slipping through the net because signs are sometimes subtle and then him hitting rock bottom when he gets older.

did u move your ds claw to another school, were they more helpful?

Since when has a school senco been able to diagnose asd, imo it's because they don't want to have to help! btw none of my kids are asd.

DS1 was 'blocked' from following the NHS diagnostic route by the CT/Senco submitting a negative CAST questionnaire to the comm paed who was delighted to report that there was no need to refer him for ADOS.

I got a private diagnosis from Daphne Keen and Margo Sharp administered the DISCO. The original comm paed did not accept the diagnosis but a new one did and did not believe there was any need for additional NHS assessment.

exactly...iwanttoscream. i would like to ask senco that very question.
senco told me herself last year that she had no asd training but yet she knows ds is not on the spectrum.

school do not want to help i have no idea why.

i may get ds seen by daphne keen a dr in london who is highly recommended and specialises in asd.

i am either a liar, going mad, bad parent or ds has high functioning autism as per private dx.

i knew the moment i read the signs and traits of asd that i had found the answer to ds.

there is enough to battle with without having to be made to look like a complete nutcase

keeponkeepingon...are posts crossed. i see you mention daphne keen too. i have an appointment booked in sept which i didnt get round to cancelling. im not going to now.

i cant believe the senco blocked you from having ados- oh my goodness do they have that power by filling out a form.
out comm paed said she will provide ADOS so thats one good thing. hoping that doesnt change.

how did you get a new comm paed?
when dx was accepted by that paed - did you then get nhs to state they agreed?

It's down to keeping hold of there sen budget, they just hope you will give up! Don't give up!

i wont, thanks....your name is very appropiate to me right now.

DS1 saw a different comm paed for SA because we live in one county but he went to primary in the neighbouring county. The child sees the comm paed in the county they attend school.

DS2 was seen by the original comm paed, but she kept mixing up the boys and was clearly still focussing on DS1 so we complained and now see a different comm paed at the same primary care centre.

I was going to tribunal and so the LA solicitors wanted DS1 to be seen by the comm paed again to see if she agreed with the private diagnosis. Following the consultation, the solicitors spoke to the paed on the phone and she wrote a report to the LA confirming the diagnosis.

Despite that the LA EP wrote a report for tribunal where he admitted he had no jurisdiction to do so but then spent 2 pages attempting to challenge the diagnosis. The LA conceded but even if this had been an issue at the hearing by that time the only 'deniers' were the old primary staff - the LA EP and the original comm paed were unduly influenced by their accounts that all was fine. The further assessment by SALT and consult with comm paed both confirmed ASD.

Sorry to swear but it is absolute bollocks to say that children with autism behave the same in all settings!! I know loads of children and there are lots of parents on this board whos children can hold it together at school but then fall apart as soon as they come home.

My Dd3 is one of them and by the time I threw the towel in with her old school she was depressed! She was 8 by the way Some days she would fall apart before she even got to the school gates even though she had held everything in all day.

Her new school saw the things that I see and more importantly believed in what I was saying. They and CAMHS helped us to get her a diagnosis the following term!

A label should be seen as a signpost to point the proffs, including teachers in the right direction to get support for your child.

My Dd3 has a label of Asd, not naughty or stubborn as she was labelled at preschool.

Dont give up, keep fighting for your child and good luck

Ps, why dont you post a question about how many children can hold it together at school and then fall apart at home.

I think you will be surprised how many people there are out there who are experiencing this!

thanks all. for the first time ever im questioning myself. maybe my child isnt on the spectrum, maybr its something else. he has been dx HFA and i feel that to the untrained eye it is not always obvious. . if the paed is having doubts thanks to thr senco what chance do we have on getting nhs dx. im going to see what daphne keem says and if she also agress ASD then i wont listen to a doubter again. that will be the third private agreeing proff. ill go to GoSH if i have to if nhs wont diagnose.
i do know that some children can hold it together at school and this is what i presumed was happening with my ds. is it ok that we tries hard to have friends and actullay has a few now, is it ok that he makes eye contact more often than not? does this make him non ASD. i told the paed that i felt that wasnt the case and that aspergers and hfa children can and do makr eye contact and do want to be socially included - is this right? he has only just lately been interested in others he didnt want to know in previous years.
i dont know why im queationing myself i know all the signs are there i guess i just have to stand my ground well with nhs system.
the label isnt inportant but i want to know if there is a label it is the right one and if there isnt a nhs dx that that is because it is not exsistent and not because school are saying nothing wrong and because he makes eye contact and wants friends.
if paed thinks ds is just shy and unconfident i asked her her she explains ds going up to total strangers and commenting on them ie telling them they shouldnt smoke or they will die or being very literal in what he says / does a shy child do that? why does he thinks random strangers are his friends.
the list goes on and on with his behaviours.
ineedmorepatience...i will try that post as it will be great to get more insight on this

ASD is a medically defined disorder. And diagnosis or exclusion of medical conditions is done by medical staff. Information from parents, bus drivers and teachers is useful in working out what is (or isn't) wrong. Conflicting, confusing, or incomplete information should be balanced, interpreted and explored further. Not simply accepted without question.

Doctors should not (and may not) delegate their duty to make accurate diagnoses to bus drivers teachers or any other community members. Delegating parts or all of the diagnostic process to junior doctors, clinical psychologists, specialised SLTs, extended role nurses and other health professionals is usually appropriate, and often helpful. It's ok to worry about misdiagnosing a dc if no-one but mum has ever detected an issue. But not diagnosing when teacher says 'no issues', but ADOS / parents / bus driver etc disagree .

A private diagnosis probably isn't the way forward just yet. But a detailed check-up by an ASD-experienced OT or SLT (including careful observation in and out of school- ask the NHS first, but anticipate that you'll need to arrange and pay for it yourself) will help.

The NHS paed needs more info so they can work out for themselves if
a) you're causing/ imagining/ triggering ASD-like symptoms
b) SENCO is failing to notice/report (perhaps subtle) signs of ASD issues
c) you and SENCO are both right, so he needs referral to an NHS team specialising in tricky, high functioning dc, to get a clearer picture.

Do not question yourself so. I would accept the private DX no question about it. Such a dx is not banded about willy nilly or without any thought behind it.

Daphne Keen will tell you how it really is re your DS, she won't fob you off.

If I had a choice between a developmental paed and a community paed I would see the developmental paed first off.

SENCO wants to fob you off, this person also is completely unqualified to utter such pronouncements in the first place and should actually not do so. SENCO as well likely would not want to help your child anyway at school even if he did have a Statement in place.

I would urge you anyway to apply for a statement and ignore any naysayers.

You are his best - and only - advocate.

thanks for this. we already have a private dx and detailed report, this pysc did not observe at school but did ados, cars, dsmd. i also have another report by psyc who observed at school and did objective tests her report indicated autistic traits but needed further specific assessments such as ados to confirm. this is what prompted the ados assessment above.

i know the paed is just doing her job and cant dx children willy nilly. she is confused because school are denying any issues and havr said ds is not autistic.

her view is now that he may just be shy unconfident and socially slow. and that im a bad parent but she wont actually say that.

should i get a private OT or ed psyc into school to observe to find out if there are signs being displayed at school or not or to determine if ds is just covering up and holding it together at school?

You could try going straight to option c) via your GP

"Respectable private doctor/ psychologist says definitely HFA"
"NHS doc says private doc wrong, cos teacher told him so"
"I'd like an NHS second opinion, as the two docs are in disagreement"

thanks atillia im going to wait to see what daphne keen says. surely 3 proffs including daphne keen cant be disbelieved on the basis that school say nothing wrong.

paed thinks that the high ados scores are maybe not down to autism. because school are saying all is rosie.

she totally accepted the private dx and asked me what i wanted to do to go forward. i told her we wanted nhs dx too.since speaking to senco how view has changed slightly.

im really considering moving schools to a far more inclusive school.

Dear SENCO

I understand you have refuted ds's private diagnosis of ASD, made by a (insert qualifications, years of experience, current post previous nhs job)

Dr Autism-Expert made this diagnosis following a detailed history, careful examination and the use of structured clinical instruments, in accordance with the NICE guidelines. Dr Autism-Expert's comprehensive assessment was informed by Ms Psychology's school observations and test scores, which indicated possible ASD.

I'd be grateful if you could clarify your relevant qualifications, and whether your assessments were also based on the published clinical guidelines.

Lots of love
Xxxx

Yy to new school

Moving school was the best thing for Dd3, she wants to be social although she does have lots of issues around this. Her eye contact isnt great but is not completely non existant.
I think maybe you should have a mooch around the other schools near to you and see what feeling you get.

love it mumdelu your letter is brilliant! thank you

do i have to wait for nhs outcome ie ados etc before i can go to gp for option c)

can i ask to be referred to GOSH now where they specialise in HFA

i found a perfect mainstream really suitable and inclusive school. a school that when they state 'every child matters' they actually look to mean it.

but worried as ds will
miss his few friends . and takes years to settle like current school.

what if it turns out he doesnt have HFA and ive moved him and distupted him for nothing.

if i move him i have to do it for september or we hold on where we are. he is about to go to juniors after summer

although i cannot deal with that senco a day longer.