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.
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.
Thanks Firemonkey, yes exactly. I really value my ADOS experience because, whilst I was careful not to mask, they picked up on things that I wasn't conscious of at the time & so I can be 100% sure that these were objective "tells". I wouldn't want that possibility to be taken away from others about to have their ADOS appointment.
So I think it's fine to say that ADOS is a structured and objectively-scored event, nothing to be scared of, informal & friendly, is a mix of discussion and tasks etc. , we should avoid saying things like "I had no idea that an NT would do *this* at *this* point and I did *this* & that got picked up on" or "I found out afterwards that the bit where they say / do *this* is to see if you X/Y/Z."
I must admit that during my Autism Diagnostic Interview that preceded my ADOS, I did feel like there was a prior assumption that I was *not* autistic and that the objective was to prove that was the case (just my feeling, could easily be wrong) and so I have sympathy with the viewpoint that says that you have to fight for your diagnosis if you've been masking for three decades as you're likely to continue masking in the interview and the diagnostic process isn't particularly attuned to screening that out, and hence a degree of "prep" (taking off the mask consciously) is a good thing. But, I didn't feel like that in my ADOS and that's why I valued its objectivity so much.
And the tricky part of "taking off the mask consciously" is how do you know what is "taking off the NT mask" (increases objectivity) and what is "putting on an ND mask" (threatens objectivity)? Again - I didn't know how ADOS worked (and still don't in its entirety) and hence can't accuse myself of unduly influencing it.
I was very nervous waiting to do the ADOS, but actually doing it was not too bad. One part I thought was testing a certain type of intelligence(which I'm bad at), and I was flummoxed by how easy it was. Turns out it was testing social communication!
Yep. See - I know exactly which part you mean, but like you I didn't when I did it & hence behaved authentically. If I did it again knowing what I know now, I would worry that I was pretending - in either direction.
Maybe the test is robust enough to cope with this, but my mind certainly isn't :-).
I'm done with Christmas Cards said:Maybe the test is robust enough to cope with this, but my mind certainly isn't :-)
I have recently completed the ADOS test and received a diagnosis of Aspergers. As with most people this has been a time of discovery and I was trying to find out as much information as possible before doing the assessments. Fortunately I couldn't find a lot of information about the ADOS assessment and so wasn't able to mask NT mannerism. I will take on board what you have both said and refrain from giving out details that would possibly invalidate the genuine Aspie. Thanks for this discussion. I must admit at first I wanted to share my knowledge with anyone who would listen but some details need to be given only on the day of the tasks.
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.
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'd agree that it's wise to resist publishing too many details about the objectives and content of the ADOS. There are a few tests where knowing 'how' the test works will lead to the results being unreliable. the WCST (Wisconsin Card Sorting Task) which measures how much an individual perseverates, is a perfect example of another type of test where knowing how the test works will lead to ceiling scores, that is the participant may be extremely impaired but because they know how to 'do' the test their score will look as if they are not impaired at all. Incidentally I've done the WCST myself and scored 79 (severely impaired range - what can I say, I am the Queen of Perseveration!), when it was time for a re-test, I said there is no point, because I've since read up on the test and I know how to 'do' it because I now know what exactly it is looking for.
Sorry that was an extremely long and convoluted way of saying. No we shouldn't share, let's keep the details of the ADOS a secret! I should probably check that I haven't already blabbed the details elsewhere now and if I have then I'd best delete it!!!
I don't think it's unfair to say that it might do that. It not something one could say 100% wouldn't happen .