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Had a shock yesterday-ADOS result.

(7 Posts)
frazzledazzle Wed 07-Oct-09 07:35:41

I thought I was going to be told DS1 has aspergers but he was diagnosed with autism sad.

I didn't realise he had such a BIG problem communicating.It was hard to hear.Also all he wanted to talk about was animals and would turn any convo towards them.He couldn't answer a lot of questions with the appropriate words.There were lots of other probs too obviously.

He scored 16 in the ADOS which was much higher than I expected.

My heads all over the palce today.

Also I went to speak to his teacher requesting a meeting with her and the senco to discuss things but she said I don't need to see her.She said when they get the report from CAMHS the senco will act on it.She also said she thought he had AS and she taught an autistic child last year and DS isn't as bad as them.

I don't know what to think/do.

linglette Wed 07-Oct-09 09:12:28

That does sound like a shock.

Hmmmmm, sounds like there are clear differences between (i) test results (ii) your knowledge about your child and (iii) teacher's professional instinct (she's probably just confusing herself and others by using the medical terms but if you can get her to stop doing that no doubt her own professional judgments will be valuable).

Perhaps get hold of the report, read and re-read it, figure out which bits teach you all something more about his needs and which bits might not be that helpful, then politely but absolutely insist on that meeting?

Littlefish Wed 07-Oct-09 09:21:04

frazzled - whether or not the teacher thinks she needs to meet with you, it sounds like you need to meet with her. They should be supporting you in this diagnosis, not simply acting on the report.

Don't be fobbed off. Put in another request, and if she says no, go straight to the SENCO.

amberflower Wed 07-Oct-09 09:27:49

Must confess I am not familiar with the structure/scorihng of the ADOS - do you get a written report in due course? - but I can sympathise with the shock DX. Earlier this year we went into the assessment process thinking DS had dyspraxic tendencies if anything but came out with aspergers DX.

I would agree with linglette - the key thing I would say is to focus on the individual needs of your child, bearing in mind that no matter how many autistic children his teacher may have taught in the past they all present so differently that you really can't actually compare one to another.

The other thing I would say is that the ADOS will obviously be a structured assessment in a clinical setting - it could well be that his traits were exacerbated so to speak by that environment, as it will automatically have subjected him to a certain amount of stress and pressure by the very nature of its being a formal assessment.

So - take your time to get your head around things and don't be afraid to challenge/seek clarification if what comes out of any formal report seems to bear no real relation to the child you know. You know him better than anyone. And yes, definitely get the meeting with teacher/senco asap. Good luck.

troutpout Wed 07-Oct-09 10:03:15

Amberflower is right about just responding to your child's needs. I have found that ds fares differently from year to year with different teachers...some just get him...some haven't got a blardy clue.
Make that appointment anyway.You already know the dx that the teacher will receive. Does your ds already have funding/suport in the classroom? You could ask them to apply (start as you mean to go on wink)
Sorry it was a shock yesterday...fwiw i think ds scored slightly lower on the day than i would have expected...he was subdued and so did not rant chat about his specialist subject wink..he also didn't stim at all (although he does at home). Try and see it as a pointer more than doesn't really matter does it? only the help/support he needs does.
Good luck Frazzle...he will be alright,your boy

frazzledazzle Wed 07-Oct-09 12:11:09

Thanks everyone smile.

We will receive a report in a few weeks so we can read it and check it tallies with what we think.Everything we were told yesterday did make sense and it did sound like our DS.I know the score isn't that important,I always knew that they would say he's on the spectrum just not that far along.

DS has no funding or support and according to his teacher everything is fine at the moment.This doesn't ring true though because last year he had a lot of problems in the classroom and his teacher said DS would need support this year.

DS new teacher said "I've already told you I'd tell you if there's any probs,no news is good news".She told me twice that I don't need to see the senco but I want to know if they realise how hard DS finds communicating with people.On the surface he seems to cope ok but if you look further you can see he has big problems.

P.s my son is a lovely boy you know I don't want to sound all negative smile see

daisy5678 Wed 07-Oct-09 19:54:08

We had this. J scored 1 less than full marks on the ADOS and I was very shocked - like you, the test itself highlighted many of his less obvious difficulties that I'd not really seen so clearly before and I was very shocked. Thing is, the ADOS is not supposed to be used in isolation - yes, a lower score indicates ASD rather than autism, but the Aspergers/ autism dx decision is supposed to be made on whether there was language delay (autism) or not (Aspergers). Yet here, low ADOS score = Aspergers and high ADOS score = autism, regardless of speech delay.

I wouldn't get too hung up on the description - HFA and Aspergers are virtually interchangeable labels IME, except Aspergers seems to be a limiting label when it comes to funding in some places e.g. Social Services help won't be given to Aspergers dxd kids but will to autism kids, in some cases.

Sadly, J's school weren't so shocked - they'd always known that he was autistic, aparently, but hadn't wanted to upset me by implying that it was anything more than the ADHD that he was initially dx'd with! His behaviour was so extreme that everyone was kinda relieved to have an answer. The good news, I guess, is that there are few problems for your ds at school. Sounds like you're saying speech and language issues are the key problems so perhaps a referral to speech and language therapy might be good. I think it's bobbins about not seeing the SENCO - if he has additional needs, the school need to know and plan provision if necessary.

It's a lot to take in, I know, but don't let a score fool you into thinking that ds has changed in any way - he's still your boy!

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