Autism assessment - ADOS Module 4

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? 

Parents
  • The flying frogs!!!   I remember that at my assessment.

    Did they also ask you to do a jigsaw made from regular rubber pieces and then refuse to give you all the pieces to try to get you to have a meltdown?

    At the very start of the assessment they warned me that the exercises were aimed at young children.  And they would adjust the interpretation to take into account that I was an adult.

  • Yes.  What on earth were they looking for with those flying frogs?  And yes, I got the jigsaw too but simply thought it was mildly irritating.  I said I'd finished but that it was unsatisfactory due to the layout and number of pieces not corresponding.  They offered more pieces, "If you want," but I refused on the basis that the puzzle still wouldn't look right or correspond to anything.  they kept pushing it and I said, "No.  If that's how the puzzle is supposed to be, let's just leave it!"

    I also got a child's map of the US, with little drawings for each of the places and was asked to describe it.  So I said, "It's a child's map."  And they kept asking for more and more detail whilst I simply felt puzzled as to why they were asking.  In my mind, "It's a child's map.  So what?  What on earth do they want from me?" 

    And some random shapes and objects to arrange around a story - a toy car, a piece of string, a triangle, a feather etc.  What was that all about?

    I'm not sure I have meltdowns but after my recent telephone conversation with them I wonder whether that might count.  I am basically trying to get a diganosis not just for me but as a way in to understanding my whole family.  My son waited over a year for an assessment but then refused to engage with the process.  My dad would never engage with services either.  So, at the end of the appointment I made it clear that the constant waiting for an assessment and then the waits between each of the appointments was really getting to me.  I also complained that they weren't really considering us as a family and that, from my perspective, the wait for my son's assessment should also be added to our period of just not knowing, stress and uncertainty.  With that in mind I asked how long I'd have to wait to get the results and they explained it might take a few weeks because they had to have an interdisciplinary meeting to review everything, then arrange another meeting with me.  Well, having waited over six weeks I just phoned them to find that they haven't even had their meeting yet!  So it'll be another few weeks while they find a time for this then get back to me with another appointment time.  Even then, I only made my feelings known and kept pushing them when they tried to send me in other directions (psychology team support or a carer's assessment for the situation with our son).  I said, quite firmly, "But all of this uncertainty and additional stress is caused by having to wait too long.  I want to know whether your waiting times are in line with national guidance and, if not, what's being done about it!"  I also asked them what I was supposed to do in the meantime, given that I don't know whther the groups I'm joining and the books I'm buying will fit the eventual diagnosis.  In the end I complained to PALS and the CCG, but my angry reaction seems to me to be entirely understandable and probably not a metdown.  I do feel very wound up about it all though. 

    They also did tell me that the interpretation would be adjusted for an adult, but honestly I've had decades of adjusting myself and, although the "me inside" is feeling very contorted and angry, I'm not sure I'll meet the criteria.  The thing is, when I look at all the detailed descriptions of autism and the various criteria, I am certain I would have met them when I was 16.  Of course, at that time I was way too anxious to even visit my GP and seek any kind of help at all!   

               

Reply
  • Yes.  What on earth were they looking for with those flying frogs?  And yes, I got the jigsaw too but simply thought it was mildly irritating.  I said I'd finished but that it was unsatisfactory due to the layout and number of pieces not corresponding.  They offered more pieces, "If you want," but I refused on the basis that the puzzle still wouldn't look right or correspond to anything.  they kept pushing it and I said, "No.  If that's how the puzzle is supposed to be, let's just leave it!"

    I also got a child's map of the US, with little drawings for each of the places and was asked to describe it.  So I said, "It's a child's map."  And they kept asking for more and more detail whilst I simply felt puzzled as to why they were asking.  In my mind, "It's a child's map.  So what?  What on earth do they want from me?" 

    And some random shapes and objects to arrange around a story - a toy car, a piece of string, a triangle, a feather etc.  What was that all about?

    I'm not sure I have meltdowns but after my recent telephone conversation with them I wonder whether that might count.  I am basically trying to get a diganosis not just for me but as a way in to understanding my whole family.  My son waited over a year for an assessment but then refused to engage with the process.  My dad would never engage with services either.  So, at the end of the appointment I made it clear that the constant waiting for an assessment and then the waits between each of the appointments was really getting to me.  I also complained that they weren't really considering us as a family and that, from my perspective, the wait for my son's assessment should also be added to our period of just not knowing, stress and uncertainty.  With that in mind I asked how long I'd have to wait to get the results and they explained it might take a few weeks because they had to have an interdisciplinary meeting to review everything, then arrange another meeting with me.  Well, having waited over six weeks I just phoned them to find that they haven't even had their meeting yet!  So it'll be another few weeks while they find a time for this then get back to me with another appointment time.  Even then, I only made my feelings known and kept pushing them when they tried to send me in other directions (psychology team support or a carer's assessment for the situation with our son).  I said, quite firmly, "But all of this uncertainty and additional stress is caused by having to wait too long.  I want to know whether your waiting times are in line with national guidance and, if not, what's being done about it!"  I also asked them what I was supposed to do in the meantime, given that I don't know whther the groups I'm joining and the books I'm buying will fit the eventual diagnosis.  In the end I complained to PALS and the CCG, but my angry reaction seems to me to be entirely understandable and probably not a metdown.  I do feel very wound up about it all though. 

    They also did tell me that the interpretation would be adjusted for an adult, but honestly I've had decades of adjusting myself and, although the "me inside" is feeling very contorted and angry, I'm not sure I'll meet the criteria.  The thing is, when I look at all the detailed descriptions of autism and the various criteria, I am certain I would have met them when I was 16.  Of course, at that time I was way too anxious to even visit my GP and seek any kind of help at all!   

               

Children
  • I actually felt that I put on a  good performance in these tests.  Maybe they could tell I was masking?  And certainly I could feel my anxiety levels increasing because I felt under scrutiny. 

  • with the flying frog story they were looking for inefficiency in social imagination, by you being able to predict the next part of the story by focusing on the frogs. many autistic people who haven't read the book have issues interpreting what direction the story is heading.

    With the children's map of the US they were looking at interpretation skills, They assume you've never been to these places which means describing them with ease would be difficult unless you have a special interest in the US , which for autistic individuals is difficult is to describe a place you've never been.

    With the random toys and asking you create a social story with them. they are looking for social imagination skills. Many individuals with autism will struggle pretending intimate objects as people and will create a story based on a real life experience. Even adults get thrown by this task.