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
  • You make a good point. The question for me is what do you tell or not tell?  Something I'm dubious about is people who  plan very thoroughly prior to the assessment in order to increase the likelihood of a diagnosis. It would be very easy and tempting , for people doing this , to not give a complete picture of how things are (ie including things that don't point to being on the spectrum.) . 

    Like many of us I had read quite about Asperger's/autism  , but  I didn't go into the assessment with copious amounts of typed information. There was just a letter from my sister. The rest of the info re what did , or didn't , suggest I was on the spectrum was via on the spot answering of questions. At the end of the first assessment I was given sheets to fill out ,and my stepdaughter was given one.

  • Whilst I agree with the premise of the original post, I don’t think it’s fair to imply that those that came prepared with additional written information influenced  the assessor into a positive diagnosis.  

  • I don't think it's unfair to say that it might do that. It not something one could say 100% wouldn't happen .

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