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ADOS today

(16 Posts)
KeepOnKeepingOn1 Thu 21-Aug-14 16:13:42

DS2 had an ADOS today. The first doctor was a consultant he had seen before that said that regardless of the score on the day she would diagnose ASD. Clearly 'failed' tests with her. She spent about 15 mins trying to join in and then initiate an imaginative game. He did not get it. He was polite but said 'I don't know what to say' when she tried character interaction.

Then another dr took over and DS2 performed much better.

Outcome was indicated to be not scoring high enough for ASD diagnosis but social communication difficulties.

In car on way home ds2 said that he couldn't understand 2nd doctor because she had an accent. He told her what she wanted to hear to stop her talking further sad

What would you do next (and is it worth it)?

atm I feel like there is rock bottom, fifty feet of crap, and then me (courtesy of Friends - but I have good reason whereas they were just a bunch of whingers)

PolterGoose Thu 21-Aug-14 18:12:46

I am sorry.

Do you need to do anything right now? What would an ASD dx give you/ds at this moment? I know there's huge advantages to a dx, it has been the best thing for my ds, but I also know you've got a lot on right now so can this go on a back burner for a bit?

flowers

Handywoman Thu 21-Aug-14 18:44:08

Oh <handhold>

No idea what to advise.

wine thanks

<sigh>

adrianna22 Thu 21-Aug-14 22:00:31

Its so true that a diagnosis is based on a doctors opinion, plus how a child is acting on the day of assessment.

Do you feel like the 2nd doctor listen to your concerns? Could you perhaps talk to him???

KeepOnKeepingOn1 Tue 26-Aug-14 09:52:57

I have written to the consultant. Since the working diagnosis was given in January the school were told to act as if DS2 already had the diagnosis and call in support services. DS2 is also currently being statemented and the same consultant provided a copy of her January report and working diagnosis in April to the LA as medical evidence. DS2 is moving schools to another county (he was previously at a school in the neighbouring county). SCD means nothing in terms of access to resources as referral to outreach services is only allowed if their is a 'clear diagnosis of ASD'.

Having replayed the whole thing in my mind I can now understand why the dr appeared to be wetting herself with excitement at one point. I forgot that she didn't know the context and was interpreting things rather differently. The dr was asking him about whether he thought that any dc in his class might feel lonely. He launched into a tale about a particular child having no friends. He was asked what he did. He said he played with another child who she was friends with (he is very honest and couldn't claim to have played with her). As I was aware that this child was relatively new to the class and had not yet made friends and that the whole class had had a meeting, run by teaching staff, whilst she sat outside the class reading a book, and were expressly told that she felt lonely, had no friends to play with and so the other dc should play with her etc, I thought nothing of it.

Thinking back, this was the moment it all changed. The absence of context made it appear that DS2 independently and implicitly understood the feelings of another and deployed appropriate functional social behaviour, whereas, its addition indicated that George was repeating what he had been explicitly taught in class. It was obviously thought that DS2 had an amazing empathic understanding, understands non-verbal communication, is able to infer feeling states in others and is able to easily translate this knowledge into appropriate functional social behaviour and so cannot be on the spectrum. Fuck - he appeared more empathic than the average 8 year old! In all previous SALT assessments, these individual skills have been found to be weaknesses rather than strengths and are described as consistent with behaviour witnessed in the classroom and reported by teaching staff.

I just hope that I have walked the tightrope and don't appear defensive but do appear deferential. If she doesn't change her mind (again) I think that I will have good grounds for a second opinion and/or referral to a specialist diagnostic centre.

This is a disaster for the statement. Up until the request DS2 was a child who could not access the curriculum for unknown reasons. Since January all issues have magically disappeared and there are no problems in the classroom but he has been issued a no-funding statement because he most likely had ASD and would have, potentially increasing, needs throughout his education. Now ASD has been ruled out so we have no grounds for improving parts 2 or 3 (or even having a statement). The statement has not yet been finalised. Really speaking the consultant should send the LA another report now.

At least the fact that things have gone to shit recently has reassured me that I cant be that bad normally.

KeepOnKeepingOn1 Thu 28-Aug-14 09:28:23

Ultimate fail sad

Paed phoned me and said her report would say

Social communication difficulties (not on the spectrum)
ADD
Social anxiety
Sensory processing difficulties

Can I see a copy of the ADOS? Can I formally request access to his notes including the assessment?

PolterGoose Thu 28-Aug-14 10:51:04

Oh shit. I missed your Tuesday post, I can see exactly how your ds2's scripted version of empathy (oh the joys of echolalia and good memory) fucked it up. Honestly, a paed should see past that. Ds's did, in fact she commented that she could see how he had learned social behaviours.

You absolutely can ask for records, I'm not sure if it's a standard DPA subject access request or something else for medical records, but you have a right all the same.

(Are you aware you've used his name? MN can edit it out for you)

bjkmummy Thu 28-Aug-14 11:03:56

Oh keep xxxxx I'm sure you can request them - not sure what th exact process is as I've never requested medical files before.

Tambaboy Thu 28-Aug-14 11:18:57

keep I'm so sorry this is not the outcome you were hoping for. Regarding the ADOS, we did receive a report explaining in detail how DS "performed" and the scores for each individual section.
I would phone and ask for it.

KeepOnKeepingOn1 Thu 28-Aug-14 12:32:03

I'll ask to see the assessment at the review appointment but if she says no I'll put in an official request.

The ASD diagnosis is closely tied to access to resources. SCD gets you access to sweet FA. The new report will back the LA issuing of a rubbish statement or, in my worst fears, could support a claim that new medical evidence of not having ASD combined with all issues at school magically disappearing means they have to rethink issuing the statement. Not that it would matter if the statement is crap in practical terms but I am concerned that I might lose my right of appeal to tribunal if I don't appeal at this stage and he loses the statement - but then I could appeal removal couldn't I.

He is starting a new school next week that parents did not choose, with no SALT, no OT and a crap statement. sad

The consultant actually suggested that noticeable increase in anxiety in KS2 was supportive of adhd rather than asd. She said the leaving his seat was a manifestation of adhd because 'if he is not on the spectrum, he should know he has to remain seated in class'. Precisely. But it will be open season because there is now 'proof' that he is not on the spectrum and so he should understand.

He has become hypersensitive recently and is now having real meltdowns. In comparison to DS1 it almost seemed like he was pretending when he first started having meltdowns and it was almost funny because it was so out of character, but now he screams in rage in my face and then trashes the room and it is definitely not funny.

OneInEight Thu 28-Aug-14 13:08:32

The consultant actually suggested that noticeable increase in anxiety in KS2 was supportive of adhd rather than asd.

This one is just bizarre. Keystage 2 caused a huge increase in anxiety in my two because the gap between there social skills and those of their peers widened. Never mind the increased expectation of the teachers in terms of organisational skills etc.

fairgame Thu 28-Aug-14 13:23:01

The doctt sounds like an idiot with littt idea of what living with autism means. My son has very typical asd and rarely stayed in his seat in class. He constantly bolted because he cannot cope with the sensory overload of being in a ms class even with full time support.
He knows which seat is his but that doesn't mean he will sit in it!
Sounds like the doctor has read a book about autism without realising that it doesn't apply to everyone.
Is a private dx an option for you at all?

fairgame Thu 28-Aug-14 13:23:46

Excuse the typo's im on my phone blush

KeepOnKeepingOn1 Thu 28-Aug-14 14:01:40

There is the practical issue of disengagement and severe inattention in class. Now that ASD has been ruled out, the consultant is going back to adhd, despite earlier comments that inattention was likely to be a consequence of ASD. She wants to medicate him.

If the score is very low or zero I would get an indi ep in to see him if his new school don't But given paed comments that he has weaknesses in all areas and only being able to say that the use of gestures was a strength and her diagnosing social communication difficulties I can't imagine that he scored so low. I sat in on the assessment so I know that he cant have scored zero for certain tasks especially given that the dr stressed that lack of reciprocal interaction overall was a weakness. If the score is close to the cut-off my only other option (given that I was told tertiary referral was not indicated) would be if there were further decline and reassessment was deemed to be appropriate (this would take a long time) or to go private. If I end up at tribunal, I will go private (again).

I am slightly worried that they have me in their targets - when I asked what strengths she had been referring to at the consultation she turned the question around and said 'I'm glad you asked, I wanted to ask you that, what do you think that his strengths are?'. Ominous.

KeepOnKeepingOn1 Fri 29-Aug-14 12:25:19

I have just spoken to OT in the home county who had received a referral from his old OT who had been due to visit him in school before the summer but wanted to rearrange for sept. So he was due a visit in school.

New OT tells me that it is possible that he might be visited in school but first he would be seen in clinic and they would consider whether this was still appropriate. iow - it doesn't matter that OT is non-existent on the statement. angrysad

fairgame Fri 29-Aug-14 12:43:01

NHS OT are useless anyway ime. DS has OT on his statement and NHS still discharged him because they couldn't do anymore for him. He still needs the input, but he needs more than the NHS can provide so they basically dumped him. They said that an LSA could do the exercises with him and the school could re-refer if they wanted it reviewed. They saw no need for regular reviews hmm
Luckily his new school have their own OT otherwise i would have had to pay for it privately.
You shouldn't have to go through all this. Our kids should be getting the help they need but it seems budgets are more important.

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