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Original poster

had ADOS this week, just got results...

13 replies

chocjunkie · 30/11/2011 17:50

DD scored 14. have been told this is 'autism' rather than 'ASD' (was not aware there was a difference... Hmm). now waiting for report.

we were expecting this dx and had pushed for things for 2 years. so not really a surprise or shock but still fee very Sad and a bit Hmm.

just wanted to share. no need to reply.

OP posts:
GloriaTheHighlyFlavouredLady · 30/11/2011 17:53

autism rather than ASD? wtf?

Sorry btw. A slap round the face doesn't hurt any less because you were expecting it. Poor you.

Aliceinboots · 30/11/2011 17:58

What is an ADOS? Our paed is so flaky I don't know if we've had any official assessments.

We have also had no correspondence in writing and neither has our GP apparently since our first appointment in August.

I am so sorry you are feeling sad. You are entitled to feel sad. It is still official confirmation.
I thought autism and ASD were the same thing...no?

bialystockandbloom · 30/11/2011 18:03

Sorry - despite expecting (and even pushing for) it, it still sucks doesn't it Sad

But of course your dd is still the lovely person she was before she got an official diagnosis. Same great qualities, same difficulties - you now just have a label for those difficulties.

And the 'autism' vs ASD thing - tbh (and imho) I wouldn't pay too much attention. Things change so much, and so quickly, and there can be a sudden rapid spurt of development in some areas. Whereas things that weren't a problem at one point can rear up later in life. I don't think anyone can or should predict at the initial dx.

And the reason it's called a spectrum is that a child can be impaired significantly in some ways but not others - there is no same pathology to asd. Tbh I'm a bit surprised the paed (?) used this term. I guess they were implying classic autism rather than HFA/aspergers? But it somehow implies it is 'worse' and actually it's not - just different characteristic impairments usually.

Anyway, practical things. Does dd get support at school? Statement? How old is she? Now you have a dx at least you can get in the system for support more easily.

But in the meantime have some (hugs), take time to digest it though, and have a massive great Wine. And remember that there are many of us here who know how you feel.

cwtch4967 · 30/11/2011 18:30

As I understand it you have to "score" below a certain point in all three areas to get a diagnosis of autism. DS was over the cut of in one area and has a diagnosis of ASD.
It is a strange feeling when you get the diagnosis - up until the point it is a confirmed diagnosis there will always be that little glimmer of hope that it will all go away.
Big Hugs x

Original poster
chocjunkie · 30/11/2011 18:43

awww, thanks everybody. I am not really fussed about the asd/autism thing (just surprised as I thought it was the same).

bialy, DD is 3.9, gets good support at nursery (MS). statement is in the pipeline and we get regular salt... I think we get as much as you can via school/nursery and NHS. and we do some ABA (10-12h/week) privately.

alice, just google ADOS. it is a diagnostic tool for autism (basically, the paed plays with your child and your child gets then scored e.g. does the child show pretent play, does child show repetitive behaviours, how does it communicate etc).

OP posts:
coff33pot · 30/11/2011 18:44

Sorry you are sad :(

Sending you BIG hugs of support to you and your family x

blueShark · 30/11/2011 18:58

I'm very sorry you are sad. But pleased your dd has all the right support in place.

DS scored 8 which is borderline nt and asd, I was told there are two cut off points score 8 being asd, score 12 being autism. Was too busy dealing with my feelings and didn't question the difference!

DS is so behind on expressive speech and a bit behind on receptive.

Aliceinboots · 30/11/2011 19:16

Is an ASDOS similar to a Griffith test? I think the paed attempted one of these on DD.

lisad123 · 30/11/2011 19:18

We have all been there, it's a horrible time, your happy you are right and not crazy but very Sad as you would have hoped you "might" have been wrong and now when it's down in paper and everyone knows there is no taking it back.

Out pead said "it's autism" I said "what asbergers or high functioning?" she said "no just autism"!! Confused
I think they all have there own ways and our pead explained that their guidelines state, any dx before 7 is Asd or autism. Asd if no language issues but autism if there is language problems.

Hth

cwtch4967 · 30/11/2011 19:35

Well my son is 4, DX ASD and he has severe language problems. Re my earlier post, the explanation was given a week or two ago on NAS Earlybird course by a qualified ADOS assessor.
There is so much confusion around the terms used!!! If the professionals can't agree what hope is there...........

EllenJaneisnotmyname · 30/11/2011 19:42

No, it's Aspergers if high functioning and no language problems and HF ASD if high functioning and with language problems, or autism if score is above 12. All to change when (if) DSM 5 comes into play.

Original poster
chocjunkie · 30/11/2011 20:08

we applied for dla, got turned down and I just asked for a reconsideration. would it make sense to ring them up and inform about dx (though no report yet)? do you think it would help our case?

OP posts:
coff33pot · 30/11/2011 20:18

Yes I would do that. You can tell them there is a report in the pipeline should they want to see one :)

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