Published on 12, July, 2020
I recently went through the ADOS module 4 autism assessment and am wondering what they were looking for. It involved some story telling (around pictures of flying frogs and some objects to bring in to another story), looking at and talking about a kind of child's map and explaining how to brush your teeth. The thing is, I'm 55 and can, I think do these things rather well. I'm perfectly used to making up bedtime stories to children and explaining everyday tasks. I also have a great deal of experience of masking and surviving in the workplace and I'm fairly sure my responses to these questions and tasks would have look at whole lot more autistic when I was in my teens before I developed a whole rake of coping strategies. I'm the same person, however. Can I be confident that the assessment result can be reliable?
I remember that book as well. Cheltenham, in January. Actually I quite enjoyed the book.I was told I couldn't be autistic as I used my finger to point at the frogs (I was working round the page, and it helps to have a finger there). "You were pointing at them to show the other person". Err - no I wasn't. I was also told that being in a long-term relationship, and holding down a job, also made it unlikely for me to be an Aspie. They also didn't have my parents there (dead) but did have my wife and I'd sent a 26+ page doc of problems during childhood & youth.The whole assessment seemed to be based at proving a deep level of disability, which as a 56 year old, high-functioning person, doesn't strictly apply. I do have many problems that inhibit 'normal' behaviour, and are hard to work around. I also have developed coping mechanisms (masking), but am less stressed if - for instance - I'm talking about a specialist subject, which includes talking about me.Unsurprisingly, they didn't give me a diagnosis.I went private a few months later, was tested using Baron-Cohen's AAA assessment (of which the AQ/EQ questionnaires are just the basis for the diagnostic interview), and was told I was Autistic wth problems at a clinical level, some severe. Which fits in with my life experience. Curiously, my wife was present at the diag interview, and said she would have answered most of the questions the same as I (apart from not being me, of course). After this, I went back to the local NHS Trust who said that ADOS 4 wasn't 100% reliable, and offering me a second opinion. I declined as I didn't want to go through it a third time.
I had the flying frogs on my ADOS-2 (sounds like a terrible affliction), although a different picture book when I volunteered to go through it to help train some assessors.The book used is called Tuesday by David Wiesner. I remember it well:
I actually expected to 'pass' the test easily, since I thought the way I was behaving couldn't be distinguished from any other adult in terms of eye contact, tone of voice and so on, was my usual affable self, and had little problem with the tasks (apart from deciding which of several stories to tell). I was quite wrong, and got a relatively high score: here's my thread on ADOS results. I think I probably did point, but it's the other gestures and ways of relating to people and conversational abilities that the assessor may have thought were absent.
So it's either quite hard to judge your own performance, or it's a rather random judgement of the assessor, or both. I mentioned what was going through the characters' heads in the book, for example. What was the teeth-cleaning demonstration supposed to prove? Does anyone do it 'wrongly'? Here's another person describing the test, and dubious about the result. https://www.reddit.com/r/aspergers/comments/2k23dp/i_not_convinced_with_my_diagnosis_for_aspergers/ Professionals there also may the point that the tool is not taken in isolation.
Confusingly, Module 4 of ADOS, which as I understand it corresponds Module 5 of ADOS-2, are both designed for adults, even if some of the tasks are in common with the modules for children. Like many psychological assessment tools. it's copyrighted. If you've not had the assessment yet and want the result to be as reliable as possible, you may not really want to know what they're looking for. But if you do, it's summarised in a slide here:http://wp.vcu.edu/virginialend/wp-content/uploads/sites/2676/2014/04/Meera-Supplemental-ADOS-Doc.pdf
Jobs: I remember having to fill in a form for schools careers advice, and put 'hermit' as a chosen career. A shame they didn't take it seriously. I think I might have excelled at it.
Many thanks. That's really interesting to me. I am already planning my response to a non diagnosis and the probability of getting a second opinion or going private. I can't remember whether I pointed to the frogs. I do remember my elderly mother telling them that I never pointed as a child, though, and also that I was a very fussy eater. However, I've held down a job for 30 years and been in my marriage for about as long so, on the face of it, I have the trappings of "normality." That said, I have always felt different, never fitted in, have no long term friends and longstanding anxiety issues. For me these are significant factors. Apparently the multidisciplinary team will do soem kind of formulation before arriving at their conclusion. I do hope they share this formulation with me and that, if it doesn't indicate autism, it goes some way towards explaining my lifelong difficulties (incl. with people, in the workplace and with many kinds of societal expectations).