Discussing what happens during ADOS

NAS50557 said:

I still don’t understand the teeth brushing.

Executive functioning ? I did making coffee or tea instead.

Apparently, the tooth brushing task is to observe how you use, or don't use, gesture in combination with words.

This is an interesting point.  I didn’t know what to expect from the appointment when I went to it.  And was confused by some of the things I was asked to do.  From reading a few posts on this forum it seems like it can be quite helpful for some people to know more around the assessment.  There seems to be quite big differences in the feedback people are getting after their assessment.  I only got brief feedback on the ADOS assessment, which was mainly a few lines in my report.  But reading other people’s experiences where they’ve been told what the assessor had looked for, and told them how someone without autism would have approached a task or reacted, has been helpful for me.  

I still don’t understand the teeth brushing.  But I know what they were looking for when asking you to do a story with the objects, and that’s been helpful and interesting for me because now I understand why as a kid I used to get so angry if people tried to join my ‘games’ or tries to play pretend stuff.

Yes, much of it probably wouldn't come as any surprise.  I was mainly tempted to go through my GP so's i don't have to have any more contact with them.  When I last spoke to them they seemed quite rigid and inflexible, as if they were quoting the rules and that was that.  I was thinking my GP might have more authority, although I'm not sure it's part of her role.  Maybe if i go directly to them and put it in writing that would get the desired result.   

i guess I just felt very shortchanged from my own assessment when i saw my son's report and I was particularly curious about what they'd observed in the ADOS section of the assessment.  I'm 56 and a very competent masker, or so I always thought... 

Yes, I thought it should be offered at least.  I think they were more concerned about getting their waiting lists down. 

I like that analogy for perseveration :-) it’s going to stick in my head now though, every time that I see a fly doing exactly that, I’m going be thinking of that and laughing at it, poor flies! 

Im just very very bad at stopping doing/saying/thinking the same thing repeatedly over and over.....

I can perseverate like a fly repeatedly & unsuccessfully trying to fly through a closed window! I've recalled emails before now to correct a spelling mistake, and perfected software that no longer has a use. I can't think of a specific example but I'm sure this is true! I might be going back to my teenage years now when I remember a friend almost literally dragging me away from my ZX Spectrum saying "Leave it - it doesn't matter!".

I've had my medical records printed out a few times for PIP applications. My GP has only ever had the summary letters and not the raw data. Requesting your assessment data and notes from the autism centre directly is likely to be quicker. You could politely ask whether you need to put in a subject access request for this, just to let them know you are aware of your rights. 

The raw data in my report says things like 'based on xx answers in the xxx questionnaire she's likely to be sensitive to different textures such as wool, polyester etc'. As such I haven't found this info to be very useful as its points I knew already and TBH is a bit vague. I can wear wool and polyester but am sensitive to other textures not listed as examples. 

Unfortunately the procedure in different assessment centres vary greatly! It would have been decent to still have offered you a report though! I would like to think that the 'raw data' would still be there though. Fingers crossed. 

Hmm...  I don't think they did a report, but presumably all of the information on which they would have based a report will be there.  I think i'll ask my GP because when I asked the autism team about it at my diagnostic appointment they just told me that no longer did them.  Apparently many people had found them overwhelming and confusing.  They seemed surprised i'd asked. 

Any reports that the Autism team has done about you 'should' be retained in your healthcare record and 'should' have been shared with your GP. Maybe contact either the team themselves or your GP to request a full report?

Yes, absolutely.  I'm glad i didn't have much information about ADOS because this gives me greater confidence in the results.  I am, however very disappointed that i didn't receive a report afterwards as I think this might have been helpful to me.  Anyone know whether autism teams retain the paperwork and whether I could request 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 .

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!!!

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.  

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.

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.

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.

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 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!