Discussing what happens during ADOS

Over the past week or so I've read quite a few details in different threads about what happens at an ADOS appointment on this forum (I include myself in that by the way as I've mentioned some things mentioned in my report that I found surprising and a "difficult read").

I've heard it said in the past that, whilst there is no explicit "secrecy" around ADOS and I certainly wasn't asked kindly not to discuss mine, that "they" don't like details being published - and I think there are good (for us) reasons for this. I think that if I had known in advance *exactly* what would happen and, more critically, *why*, then this would have created the risk that I would mask more (consciously or subconsciously) out of a desire to "do the right (i.e. NT) thing" and/or this would have led me to rehearse my behaviour beforehand and/or doubt the objectivity of the result (i.e. reflecting afterwards was I masking? Was I trying to display the autistic signs I had decided that I have?).

This would have led to more doubt about whether I had been diagnosed objectively via a gold standard test, and the little monster that says "there's nothing wrong with you & you're faking it" would have been bigger and louder.

As it was, because I knew very little about the specifics when I went for mine, I can look at my report and say "Yep, I didn't know they were looking for *that*, *then*, and my behaviour was 100% spontaneous and neither embellished nor masked, and it's 100% me".

What do you think? My leaning is that we should exercise caution in posting too many details here. Generalities of course are fine, but I think that discussing the specifics of the exercises and the reasons they exist entails the risks above.

Parents
  • The other thing that occurs to me is that, although i can see the rationale behind not revealing too much about it in advance, if, like me, you're left without any kind of report at the end of the process, some insight into what ADOS was looking for would help in identifying any blind spots in terms of what it was that flagged up the autism.     

Reply
  • The other thing that occurs to me is that, although i can see the rationale behind not revealing too much about it in advance, if, like me, you're left without any kind of report at the end of the process, some insight into what ADOS was looking for would help in identifying any blind spots in terms of what it was that flagged up the autism.     

Children
  • Yeah that’s what I was getting at with my reply. I think it’s really helpful for people that haven’t had detailed feedback.  I don’t know if admin would lock certain areas of the forum or whether they’ve ever asked people don’t reveal much about the assessment?  I can definitely see the rationale for not disclosing too much.  But it’s good for those of us that have been through it and are seeking answers.

    I’m still curious about the teeth brushing and would like to have seen what people in this forum did haha.  I asked my friend and she started demonstrating clearly and asked me what I did first... my first thing was to say that my toothbrush did not being lying down on the sink it sits in its proper cradle.  She said that’s probably a sign to them straight away that you like things to have their proper place, and she wouldn’t have noticed or cared she’d have just brushed her teeth and not given much commentary.