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ADOS/diagnosis help

(5 Posts)
Emptywishingwell Tue 17-May-16 22:43:37

My dd had an ADOS assessment last year but failed to comply due to anxiety (she shuts down in front of strangers), I just wondered if anyone knew what is likely to happen next as she wouldn't comply? I have no idea what the process is only that I've been advised to just stick it out. We have been in the system for 2 years now for assessment. I would ask the professionals working with her but we currently are in limbo anyway as paediatrician passed to camhs for assessment (and so they could discharge her) but they aren't assessing her for asd only dealing with anxiety. (I've flagged this with paediatrician). She had SPD dx and camhs have also said social communication difficulties so far based on 3 play sessions and previous history. Both sides mention asd when talking about dd.

zzzzz Tue 17-May-16 22:51:27

Not complying is as significant as anything else she does. Be calm they will tell you what's up as soon as they have enough data.

Emptywishingwell Tue 17-May-16 23:02:35

Thank you. I was hoping it would count as it such a hard battle to get a dx. We have only seen the paediatrician a few times, one of which was for the ADOS. But since then they have only seen her this month to discharge her as they assumed camhs were going to assess her and do ADOS which they aren't. The nurse we saw is going to look into it and see if they could do anymore but due to not complying they were at a loss. As for camhs they are going to provide some techniques for her anxiety but that's it.

PolterGoose Wed 18-May-16 09:21:03

I think I would be suggesting that as ADOS was clearly the wrong tool to use to assess her could they please use a different autism diagnostic tool, eg DISCO which was developed by the Lorna Wing centre. ADOS is also notorious for failing girls and women. The slide is from the recent IMFAR conference.

I think it's bloody lazy to do nothing because their chosen tool didn't work.

Emptywishingwell Wed 18-May-16 16:44:52

I have mentioned to both I think a DISCO would be better for her. Neither have said they can offer a DISCO and again neither are dealing with it at the min so I'm at a loss.

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