Asperger — to be diagnosed — discretion ?

[Piapiauno]

Hello I am only a week new to Asperger's for DS . And still waiting for nhs letters . And etc etc etc . A long waiting game .

Dr mentioned he wanted to tell school for support . But we are maybe changing schools in next 2-12 months. So he wrote a general letter for whoever concerned.

He is highly academic, I asked all his private teachers and they all said they suspect nothing and said he is fast learner and their best student whichever subject it is .
He will perform well in no matter 7+ 891011+.

So the issue is :
Why do I need to tell school ?
i am not expecting anything from school .
As nhs will help . And if discretion on this works out better for him and his future . I am happy to go find a few penny for he to have private session therapy on top of nhs ( before nhs more likely as it takes 6 months )

Why I need to make public announcements for something not confirmed for another 2-3 years to jeopardise his future .

Bump

for something not confirmed for another 2-3 years to jeopardise his future .

What do you mean not confirmed for another 2-3 years? If DS has been diagnosed it is already confirmed. Informing others of a diagnosis who need to know such as the school’s SENCO does not need to “jeopardise his future” nor is it making “public announcements”.

In order to be diagnosed with ASD one must have “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” that “limit and impair everyday functioning”. Someone who meets the criteria for diagnosis would benefit from support of some form in school.

I am amazed DS has been diagnosed with ASD if he genuinely would not benefit from any help what so ever at school. Are you sure? No help with the triad of impairments or reasonable adjustments? Not all support is about academics. Do you not want DS to be eligible for access arrangements?


I am also surprised DS has been diagnosed without the school’s input at all. In many (? the majority of) CCGs schools are asked for their opinion.

What help are you expecting from the NHS? Many are diagnosed and then promptly discharged. Be aware many services do not allow you to mix private care with their care, so for example if you go down the private OT route NHS OT are likely to discharge.

Thanks so much I didn’t know of this and clueless .
He is in private school right now ( none selective ) . They never spotted anything until nhs told this 3 days ago .
if I / dr tell the school it’s suspecting HFASD , ( next nhs meeting is 6 months later .)I will pay for every session they had anyway . They call in teachers into school and I pay .

We have applied 3 highly selective schools 2022 November until 2023 feb . Lots exams and interviews .
I think if I tell them . Unlike nhs will officially diagnose him by then . We won’t benefit from this .
They will say no , not for us .

So DS doesn’t actually have a diagnosis yet? DS is awaiting assessment? In that case, if DS is diagnosed, it will be ASD rather than Asperger Syndrome.

DS may be eligible for access arrangements for entrance exams, but he won’t get those if you don’t mention the suspected autism.


if I / dr tell the school it’s suspecting HFASD , ( next nhs meeting is 6 months later .)I will pay for every session they had anyway . They call in teachers into school and I pay .

I am sorry, I don’t quite understand what mean with this part. Private schools do often charge extra for SEN support but if DS needs the support then leaving him to flounder without the support won’t help and may see DS asked to leave anyway.

@Imitatingdory

So DS doesn’t actually have a diagnosis yet? DS is awaiting assessment? In that case, if DS is diagnosed, it will be ASD rather than Asperger Syndrome.

DS may be eligible for access arrangements for entrance exams, but he won’t get those if you don’t mention the suspected autism.


if I / dr tell the school it’s suspecting HFASD , ( next nhs meeting is 6 months later .)I will pay for every session they had anyway . They call in teachers into school and I pay .

I am sorry, I don’t quite understand what mean with this part. Private schools do often charge extra for SEN support but if DS needs the support then leaving him to flounder without the support won’t help and may see DS asked to leave anyway.

I mean if it’s very light ( hard to tell , no one notice ) . Can I just pay out of my own pocket outside school secretly . And plus using nhs free therapy as well. I am not confident extreme academic school would accept him . ( after reading so many other old posts here )

Someone either meets the diagnostic criteria or not, there’s no such thing as mild autism, light autism or a little bit autistic.

You can pay for private support, although many NHS services will not allow you to mix their care with private care, but that doesn’t prevent the need for support in school. Independent schools are often not supportive of SEN and when they are charge parents extra, but hiding it from the school will not help DS. Besides some insist on (suspected) SEN being declared during the application process and for you to sign the paperwork so you may have to outright lie.

There is not always a great deal of therapy available on the NHS post diagnosis. Many DC are diagnosed and discharged. What kind of therapy are you thinking DS needs?

Are you in the uk? There's no such thing as 'light' autism- you either meet criteria or you don't. Some children mask and it may not be picked up by the general public- is that what you mean?

Paediatrician referred us 3 days ago .
He mentioned HFASD . He said he is not specialist but he only suspects.

We waiting for referral letters forever now .
Yes in SW LONDON .

The thing is he is so so so academic high achiever so far at this point . And he LIKES academic . I can’t stop him thinking of maths & music .

Maybe I am biased maybe he is average . But no way he is below average .
He is geeky type . Not sporty.

he never get timed out by school .

I should have changed the topic title :
WUS KINGS ST PAUL HAMPTON ROKEBY…. Etc etc ….
We maybe get into one of them before any referral letter posted from nhs .
I may as well keep my mouth shut ?

@Imitatingdory

Someone either meets the diagnostic criteria or not, there’s no such thing as mild autism, light autism or a little bit autistic.

You can pay for private support, although many NHS services will not allow you to mix their care with private care, but that doesn’t prevent the need for support in school. Independent schools are often not supportive of SEN and when they are charge parents extra, but hiding it from the school will not help DS. Besides some insist on (suspected) SEN being declared during the application process and for you to sign the paperwork so you may have to outright lie.

There is not always a great deal of therapy available on the NHS post diagnosis. Many DC are diagnosed and discharged. What kind of therapy are you thinking DS needs?

Sorry just re read ur text. Have to declare even “suspected “ ……….. ok . Thank you .

Yes, many schools do request you declare all SEN including any you are awaiting assessment for. If the schools you want to apply to do this and you lie they may well withdraw the place/ask DS to leave if they later find out you lied.

No one is saying DS isn’t academically able, but there is more to support and reasonable adjustments at school than academic support. If you fail to mention this DS won’t receive the support or adjustments he needs. You say DS doesn’t need support at school but there are clearly issues as something made you seek the assessment in the first place, you have reached the threshold for an NHS referral, have seen a paediatrician and mention therapies.

I went in to check TIC . Come out with this HFASD referral + EEG .
Current School never suspected anything for years , only speech therapy encouragement.

If the school recommended SALT they do see that DS has SEN (whether that is ASD or something else).

If DS has a tic you would want the school he attends to know regardless of the cause, so lying if asked on application forms would be unwise because how would you then explain it?

SALT lady in school now is having an initial assess today to see whether there is a need for this .

If DS has ASD he would benefit from SALT, which is about much more than most people realise.

The doctor who referred me doesn’t quite agree with SALT. He thinks the roof of issue is he talks v fast and talk AT other kids . So no one quite understand him exactly .

Well that doctor doesn’t understand the range of difficulties SALTs work with, because both talking too fast and talking at people are both within SALTs remit. As I said many people don’t realise SALT is about much more than the physical act of speech. Someone who has difficulties in social communication and social interaction to the extent of meeting the diagnostic criteria for autism would benefit from SALT.

@Imitatingdory

Well that doctor doesn’t understand the range of difficulties SALTs work with, because both talking too fast and talking at people are both within SALTs remit. As I said many people don’t realise SALT is about much more than the physical act of speech. Someone who has difficulties in social communication and social interaction to the extent of meeting the diagnostic criteria for autism would benefit from SALT.

Thank you I will be open minded and give a try with SALT

@Piapiauno

I understand why you don't want to declare as you suspect schools will biased upon application and during the process.

Having just gone through the 11+ myself I can understand the concern. My Ds was diagnosed last year as on the spectrum ASD but to be honest it can easily be masked which is what happened, as he appears to cope, however cracks would appear at times.

When the report was written (paid private), I asked them to do a summary version which I would share with schools. I controlled this version, where all I wanted was an outline of conditions, focus on major strengths and what recommendations and I kept to factual.

I disclosed that report, as some schools stated if they find after application that there was a need they could withdraw.

I asked for extra time in exam as my son who is bright, is slow to start and sometimes gets distracted and what I wanted was a quieter space for him.

It's a double edge sword.

I would say monitor your son, see how it goes.

How are his friendship groups? Does he get anxiety (mine does). No point being bright if the social is a drawback as that's what life is about.

I work hard with my son on his social interaction. I plan on getting him some sessions with SPL as transition to secondary will be a big thing for him and I know he is worried about friendship groups.

He got his 1st choice however I need to prep him. Everything I do is private (support) as I don't want him labelled.

Thank u . This is exactly what I was worried. I even called a top 3 school anonymously to ask .
Of course on the phone It was all very politically correct and welcoming . But I still have some distrust. What if what if the school says please come clean put everything Diagnosed to be diagnosed on the form. But then once done , sorry we can’t accommodate your kid.

Current School could not tell anything wrong . No one noticed anything but only this doctor .

His social life is ok in the school. Aka no one notice any difference .

If there genuinely isn’t any difficulties, as opposed to e.g. school just not seeing them (which isn’t unusual) or DS masking (which can be extremely tiring and long term often has a negative effect on MH or leads to autistic burnout), DS won’t be diagnosed with ASD because to be diagnosed there must be “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” that “limit and impair everyday functioning”.

It’s not a label it’s a diagnosis. You wouldn’t call a physical disability a label.

He is current school teachers” pet in year 2.
as he is ahead of everyone academically .

School report below only noticing that :

some words pronounced not clear enough to be understood by peers leading to frustration.

Quote : natural aptitude for maths .
To focus on : Pronounication and emotional well being .