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What happens next? What do I need to know before appointment?

(9 Posts)
smokinaces Sat 03-Nov-12 16:38:59

Just had our appointment through for DS1s ADOS appointment. (what does ADOS stand for? Autism Disorder something?)

History briefly:

Foundation Stage profile said he completed everything but his social side - which was that of a 3-4 year old. As a parent I had noticed the difference between him and his brother and peers, which is becoming even more evident 15 months on

Saw Paed last October, who said "DS has significant difficulties in his social communication and interaction skills. Development assessment today showed his skill level was normal in all areas, however his hand and eye coordination skills and performance skills were better than his locomotor and personal social skills"

SALT was seen in July for a Social Communication Diagnostic Assessment. He did the CCC 2 and his scores were 59 for General Communication Composite and -30 for Social Interaction Deviance Composite. They have written " The scores therefore borderline suggestive of autistic spectrum disorder but his Social Interaction Deviance Composite fell in the abnormal range. This profile can be frequently seen in children with Asperger's Syndrome" They also wrote "From observation and parental report it is evident that DS is a complex little boy with significant difficulties in respect of his social understanding and communication".

So this report has gone back to the Paed, hence the appointment on the 22nd November for his ADOS appointment and the 28th for my feedback.

What should happen in an ADOS appointment? What kind of outcome am I looking for?

I have joined some groups, and am fairly sure he has Aspergers from various traits he has and managing his behaviour. He is 6. But I'm now very nervous about what happens next - that I may be brushed off, that I'm pushing for something I shouldnt. I get a mixed response from teachers and parents as to his behaviour (some you can tell blame me and parenting and say there is nothing wrong) and I cant help but doubt myself.

Just wanted some advice really!

zzzzz Sat 03-Nov-12 16:58:41

They've done their tests an assessment, they will of come to some sort of conclusion (even if that is just, we can't come to a dx yet).

Let them tell you what they think.

Challenge anything you don't agree with, asking for the rationale behind their finding.

If you agree with their dx accept it, if not don't.

Ask them what treatment, therapy or support is available, and also what is not.

Go home drink wine, eat chocolate.

Also decide weather you want ds to be present during discussion or not, and bring someone to sit with him if not.

smokinaces Sat 03-Nov-12 17:07:08

The letter says the first appointment is for DS for another assessment, the second one I am not to bring him and its just to discuss the outcomes of the previous week.

I'm just trying to figure out what they are going to do, so I can give him some kind of prewarning about how room layout will be etc, timescales etc. I've started telling him already we will be going one afternoon after lunch etc.

The wine and chocolate I can do. Daily.

ArthurPewty Sat 03-Nov-12 17:08:55

Message withdrawn at poster's request.

smokinaces Sat 03-Nov-12 17:17:35

Do you think?

This may sound silly, but I'm worried they wont.

Friend of mine went through similar timescale to me. I dont know the outcomes of her DSs assessments, but I know his seem more academic delays. They said he had autistic traits but there was nothing to diagnose him with. So now she's in limbo - her DS clearly has some additional needs but not sure what.

I'm convinced he has got Aspergers, but dont want to dig my heels in when I have no real experience of it myself. I dont know what the borders for the CCC2 are, whether he's on the edge or anything.

zzzzz Sat 03-Nov-12 18:18:06

You are in a diagnostic process. They have made their assessment and will now diagnose based on their findings. The idea is to remove "gut feelings".

You can back out of the process. You can ask for a second opinion, or accept what they say.

Nerve racking, but you can't really drive the process at this stage, just react.

PolterGoose Sat 03-Nov-12 18:39:09

Message withdrawn at poster's request.

smokinaces Sat 03-Nov-12 19:31:20

Ok, all I will say then is we are leaving school early that day. Simply as otherwise I won't even get him there.

What does ados stand for?

And thank you. Your replies really help.

kmummy Sat 03-Nov-12 19:42:45

ADOS is meant to be the 'gold standard' for testing autism. My son doesn't understand receptive speech so there's no way I could of prepped him. I found it really interesting and showed me even more how much he struggles.

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