Ados . . This weekend!! :O

[sweetteamum]

We are 3 days away from DD having the ADOS at camhs.

I'm so nervous and questioning if she'll even get a diagnosis. I spoke to the practitioner who we've been seeing at camhs, who isn't going to be there and she was explaining the procedure to me. But at the end of the conversation she said ''and if you don't get a dx, they'll still be able to advise the statementing people'' I am now convinced she knows something I don't. Although, she does believe DD is on the spectrum.

All our hopes are on DD getting a dx, to go to a specific school.

We are actually due to see the Community Paed this morning, as we've not seen her for 6 months, so it's just a check-up (I think)

Oh I wish I didn't get so anxious before these things!!

Urgh what a disappointment. The process is brutal. And dis empowering. for you sweet

Thanks all so much. The private one is 2 days before I get results of this one, so not much difference.

It sounds normal to have to wait for feedback. Which has made me feel a little better. I guess as this is the final assessment of the multi disciplinary team, they want to re-watch the recording, speak to each other and possibly even make sure there's nothing else.

I'm just impatient aren't I :)

Our parental feedback was a week after ados assessment. Then we got it in writing about ten days later (though I rung and requested by email in the end)

The way the assessment is done means they have to review and everything and gather together the multidisciplinary info before feedback so sounds usual

Our parental feedback was a week later too. Ds had the Ados assessment with me sitting in the waiting area (the parental input about development had already been done over a couple of sessions a couple of months prior and the team had already been to school). I had no feedback either and I remember my heart sinking when they came out beaming and said ds had done really well and they were happy. Ds is 13 and clever at hiding things.

I then received a phone call saying could we go in for a verbal feedback as they had some concerns about him and then the magic words 'we found what we were looking for'

We went without ds and the assessor took us through the results and gave us a diagnosis of autism/aspergers.

I cried in the feedback. Sheer relief and devastation. Strange strange feeling.

I sympathise with the feeling of helplessness of waiting for results. You feel like you are in limbo

Thanks for sharing your experiences with me. I expected to feel some kind of relief once the ados was completed, but, I feel more anxious. It's a good job dd is completely oblivious to it all or there'd be 2 of us 'on edge'

She will do what needs doing then as soon as she's left, she doesn't want to talk about it or think about it again. So when I was asking her things, she just kept saying 'I can't remember' meaning 'I don't want to talk about it'

that was very similar to what our Ds was like sweatteamum, all we got was that there was no lego (at the initial appointment he had played with lego, which in a way hid a few of his characteristics because he was concentrating on something he liked, so gave good eye contact...once, volunteered information....when he interrupted our chat ) and he couldn't remember which also means he doesn't want to talk about it, he was not impressed by the experience to say the least which was demonstrated by him running off when he left (very out of character for our Ds) and a small meltdown over his seat belt when we got back to the car . Ghostgowoooh I think its what is said more for the benefit for the Dc involved. We were also told that our Ds had done really well and he wouldn't need to be seen again, which made our heart sink because we thought we had put him through all of the observations for nothing. We later found out that he had no eye contact what so ever, had no interest in the pretend play initiated by the psych, couldn't keep still was constantly moving and messing. So they must of seen what they needed to but haven't said if/what they think yet which again sets the mind off into over drive but still I would rather they have the full picture before they start giving me answers.

I absolutely agree with you. I'd rather they took their time. In dd other observations they noted that she had no pretend play or interest in it. This surprised the assessor as I suspect at 11 they'd expect her to have some.

Although, I'm very cynical in that if dd is asked/told to play with something and she responds, because its an instruction, how would that be seen by the assessor? She said she did what she was told so I'm feeling quite negative still - I think as she's learned to copy people she could pass for 'average' when in reality, she desperately struggles with the most simplest of tasks.

I see were you are coming from but I should imagine that the person assessing would make subtle attempts to get the Dc to respond rather than asking or giving a direct instruction, the fact that we know how they would respond and us not being in the room at the time does get the mind boggling doesn't it. For example when the psych was telling us about Ds's reaction to imaginative play she had said " I'm going to be an alien....." (we did actually hear this part we were just outside the door earwagging waiting ) and in theory he should of responded in a way (I imagine) such as laughing, joining in etc but he didn't he just said no, stop it now! so it was very short lived. I should also imagine that there may be different times that copying someone wouldn't quite fit in IFKWIM which would really stand out to the trained eye. My Ds NEVER did pretend play when he was small, no superman, no feeding teddy bear, nothing at all but now when playing with his younger cousins he will say something like pretend we are transformers (then transform...making the noises) but it is the same thing over and over, he has now done this same thing 4 times that I have noticed its like de javu but to watch and to listen to him he is simply mocking the cousin who he spent all of his time with while growing up...even down to the way he says it. which in a way explains the schools feedback to CAMHS about him getting upset when playing with his peers if they don't do what he wants to during the game.....which is the only way he knows how to play it..if that makes any sense at all.

That makes complete sense and I think it's a good job you reminded me of that. What I'm terrified of is no dx and just being left to it with her struggling so much. We really have no access to get her support without a dx. It's been so long coming and I realise I'm probably saying the same thing over and again.

we seem to be in the same boat at the mo, but after long chats with my MiL she has told us that if we are not happy with the outcome (by that she means still unanswered questions) there are other ways to find answers ie private (although I have heard that sometimes this wouldn't be worth the paper it is written on BUT would help us to try and help from the sidelines), of course we are lucky that we have someone who can help us with this and not everyone is in that position. But if we don't get a clear idea of what our Ds's difficulties are we can't help him...and after spending so much time observing him I am now (although still slightly torn at times) sure that something is amiss so if ASD is ruled out and they are unsure I have been doing more than enough 'research' to find a next course of action. Chin up hun, you have come this far, I know it is easy to say (and from experience know how hard it is) but sit back, look after yourself and your family for the time being and see how it pans out.

Thanks for sharing your experience too. To be honest I think we will go private in a few months time, if this doesn't show anything. I just am not sure if there's a difference between the ados and disco - it may be an age related difference but it could be worth is considering that also.

Eeek! What does this mean please?

Just had Camhs on the phone. Really nice lady. She asked when I go back for feedback this weekend, if she could do another assessment on dd.

She said the educational psychologist at dyslexia action said dd had average ability and hadn't mentioned her in a social context, but yet she wasn't showing (or appearing) like someone with average ability and they'd like to clarify things for her professional integrity.

She said either way, don't worry as we'd still get a piece of paper clearly outlining her difficulties.

I'm so confused now as she mentioned autism and developmental delay but how can you tell. Sorry to harp on I'm just worried now.

Why would Ed Psych at Dyslexia Action mention her in a social context? Did this Ed Psych identify SpLD or not? Is this what they want to clarify further, do you think?

Just to add: whatever it means, it sounds like they are dotting the i's and crossing the t's which is really good news. Good luck xx

I'm not sure why camhs thought Dyslexia Action would speak about her socially. She has a dx of mild dyslexia from the assessment.

I'm just trying to work out what other dx could be given when she said ''she clearly has social commnication difficulties''?!

Maybe CAMHs are under the impression that Dyslexia Action EP assessments are comprehensive, encompassing all areas of functioning in an educational setting, which of course they aren't. They are to do with a very specific remit of diagnosing or ruling out SpLD. Why not ring them and clarify and advise them that they don't need to wonder any more???

Ok, I called and made it clear that DD has not had a comprehensive assessment and it purely assessed her for the Dyslexia. However the Dyslexia Action Report shows an average IQ.

Basically, DD will have the WISC assessment.

If DD IQ is below average, then she has delays in various settings and i'm presuming thats more of a development delay.

If DD IQ is assessed as average then she has delays in only social settings, according to her IQ. Which would then mean Autism.

Is that what they said? Can't she have ASD and SpLD? Did Dyslexia Action not do a WISC or ASC?

Sorry, more questions.........

No, they didn't say she can't have both.I got the impression that they want to make the right diagnosis. At the moment, they are presuming about her IQ (Even though one report says she's average ability - this was the BAS 11 cluster scales), they are questioning her IQ based on how she was on the day.

If she does come out with an average ability score then she'll get the autism diagnosis.

I did actually ask can't you have a low IQ and autism but she went into more detail about typical autism and she should ave more difficulties.

Brilliant, Sweet it sounds like whatever happens will be a diagnosis on a firm footing, really pleased and got my fingers crossed. Are u still going for private assessment?

I know. I'm just so nervous that we are going to struggle with an average dx, rather than a firm asd.......But then again, I really don't believe her IQ is low/delayed etc. I don't believe she'd of known how to cope if she had a lower IQ - but I could be wrong.

Why are they only questioning this one part of our private assessment? Why aren't they questioning all the other assessments that are private and clearly show delays? Is it because it's the one thing that can make or break the asd diagnosis.

I'd still like to go ahead with the private assessment, but not sure how useful it would be. It was at Portland Hospital at London with a regognised Dr