Published on 12, July, 2020
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.
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?
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, 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'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.