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
  • I'm one of those who handed in copious notes, which happened to be 8 sides of A3 on how I met the DSM5 criteria. I am much stronger communicating in writing than verbally and wanted to ensure the assessor had as much relevant info as possible. 

    I don't believe reading what happens in the assessment via forums is a bad thing. I'm under the impression a lot of the assessment is about observing how you react and as they'll be looking out for a wide range of behaviours. As we're all different, although I know what tasks I undertook and how I reacted I don't know the full assessment criteria. Therefore. I know the questions but not the 'correct' answers.

    I've just given up a post in an HE institution where we've recently let go of an assessor as she wasn't diagnosing any females, even though with another assessor these students usually came back as autistic. Some assessors will be good at their job, others may have old fashioned attitudes, unconscious bias etc. Another reasons discussing our experiences is useful is to enable those who are incorrectly misdiagnosed (like the students I know)  have a better understanding of how autism presents in an assessment situation and can push for a second opinion in order to receive the recognition and support they need.

  • Nothing wrong with taking copious notes and researching ASD extensively & I did exactly the same. I 100% agree re assessors too. I was just grateful to experience the ADOS without too much prior knowledge.

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