ADOS test says ds has hfa but school says he is "normal"

[orangemoon]

Ds had his ados test at Cahms and the dr says it shows he has higher functioning autism, however after the dr discussed these findings with ds's school senco and school said he was a normal behaving pupil the dr has decided not to diagnose hfa.

Cahms have now said there is not much they can do for us, although they can clearly see ds has quite major issues.
I am so angry with the school, ds has been bullied over the past few months by another boy and I have has to collect ds twice because he has had panic attacks because he was terrified of what this boy was going to say to him next, and school have dismissed these attacks and don't seem too concerned by them.

I don't know what to do anymore or where to turn and most of all I feel like I am letting ds down because I cannot get him the help he needs.
I am considering contacting bibic to see if they can help us, I would even pay for a private diagnosis but nhs and local authority won't accept it.

how are schools allowed to interfere so much in what should be a medical issue only?

Apply for a statement (while you still can!) It's based of NEED not diagnosis.

Consider another school, if school are in denial then they may not put their heart into giving the your child adequate support.

The NHS does allow you to ask for a second opinion on a diagnosis - use this option.

ADOS is just one of the tests used for diagnosis and, sadly, they will also look at behaviour across settings and usually also do an ADI ( a lengthy questionnaire with parents and psychologist or psychiatrist).

Best practice suggests that the decision should also be made bya multi-disciplinary team not just a single practitioner. This usually includes OT and SLT.

Did they do anything other than an ADOS test? Have other professionals had any input?

You do have the right to ask for a second opinion at a tertiary level centre like Gt Ormond St.

However, it can be a very big problem if school don't understand these things and actively seek to undermine you.

I have to say CAMHS won't do anything to offer support if you do get a diagnosis. You'll need a statement for that but I would seriously think about moving schools.

This was our second opinion bochead.
Ds has been with Cahms since he was 4, he will be 9 soon and all I have done is bang my head against a brick wall whilst they all turn around and say " oooo ds is a puzzle isn't he!".

I would love to remove ds from current school however dd also attends and is in her final year and it is impossible to do 2 separate primary schools at the moment.
I am however keeping very close tabs on ds and school, the boy bullying ds is his best friend! And ds doesn't understand why, he desperately wants this boy to like him but this boy has been a troublemaker since reception.
I am however impressed with his new year 4 teacher, she is new to the school so has not me ds prior and has picked up that he had trouble with fine motor skills and is well below national average for reading writing and mathematics.

I say 'sadly' about looking at behaviour across settings because if you have an ignorant school, it is their opportunity to undermine.

Inappropriatelyemoloyed, ds was given the ados test by the clinical psycologist, no other input from anyone else and no other tests given.

I did not know I could request great ormond street for second opinion, silly question, do I go through Cahms or gp for referral?

I think you have to go back to CAMHS and say you would like a second opinion and the referral comes from the secondary level.

You have a right to ask but not to get. However, in cases like this, where there is a clear indication one way and contradictory evidence only from school, I think it would be difficult for them to argue against.

I would also ask why they don't offer a multi-disciplinary approach as this is best practice - see NICE guidelines here

Thank you innapropriate, you have definitely helped me a lot this morning, and thank you to everyone else as well, feeling slightly less stressed than I did first thing today.

Are you getting documentation when the school asks you to pick your son up as a result of anxiety? If it is written down then they can't dismiss it.

That happened to us orange, it took a change of school in the end to a much more inclusive primary.

The new school supported us fully and within a term she had a diagnosis.

Good luck

I had this. Almost. Camhs did ados. But after the school visit, she said she wasn't sure.
I lost respect for the camps lady at that point.
I went mad. I got her to speak to dh and my mum. Who backed my story. I told her I wasn't leaving without a diagnosis.
I got it. Stand firm.
It's very very common for Aspergers and hfa to perform well at school.
So any medical person who suggests that you are making a meal of it , is an idiot. And I was told that ADHD specialist nurse I met.
Don't back down. Be firm. Don't let them deny you this.
Go back to her. Demand the diagnosis.

So. You think HFA is correct. The ADOS picked things up. The dr thinks he probably has it. CAMHS are sure he has problems of some sort, and have said this for 5 whole years.

The school have not dealt with bullying, and instead call you to pick your ds up because they can't manage his in-school panic attacks. The SENCO, who appears to be useless, then tells the dr "But he looks ok to me". And so the dr says, "Well, never mind my previous opinion, it must have been wrong, if the teacher says so."

Go back, and tell the dr to grow some do what oblomov says. It's reasonable for the dr to want background info, and to make sure the problem is real. You can deal with this by bringing along grandma, childminder, cub leader, whoever. But allowing a primary schoolteacher to unilateral over-rule a doctor's provisional diagnosis is just silly.

The polite way to do this is to call the dr, and ask for review in 6 weeks with the benefit of direct input from the current class teacher.

Maria has said exactly what I was trying to say, badly.

The whole point , with many AS, and HFA children is that they hold it together well at school. Then they collapse for you. So it s only you (or mainly you who sees it).

School have for the last 4 years, insisted that ds1 is "fine", I actually believe that they tried , intentionally or un, to jepodise and prevent me from getting a diagnosis for ds1.
And since the diagnosis , nothing has changed.
School seem to think I am imagining it all, as if I have munchausens !!

But what threw me, saddened me, was as Maria said,
what sort of Dr, how unprofessional, to be swayed, by a school opinion?
Beggars belief.

Go back to the Dr at Camhs and 'politely' question his judgement and ask if he is so impressionable then that questions his medical competency.

HTH

Op, come back. Please. and assure me that you wont let this drop.