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What next? Processing my diagnostic report.........

I'm done with Christmas Cards

Just sharing some thoughts and hoping for some suggestions / thoughts..........

My diagnostic report tells me that I meet the criteria for deficits in social communication and interaction, but when it comes to the other necessary criterion of restricted and repetitive behaviours, I meet only one of the two required subcategories (I meet the "sensory differences" one).

This means I would have a positive diagnosis if I met the criteria for any of a) stereotyped and repetitive behaviours, b) restricted and fixated interests or c) response to routine and change.

I think I can agree with my report that I don't meet these - but I can see them in myself, especially the relief from stress that I get from being absorbed in a hobby, and my dislike of doing things that are outside my routine. But maybe this is normal. It strikes me as difficult to call objectively and I have to trust the expertise of the assessment team here.

I have been referred for an ADOS test, but I really can't see how this will change anything, as the ADOS test focuses on "communication, social interaction, and play (or imaginative use of materials)" - which won't offer anything to modify the call already made on the criteria that I don't meet the threshold for.

I've learned through this process that what matters is that I understand myself and give myself permission to be kind to myself, and the report helps me by stating that I *do* have differences in social behaviours and sensory sensitivity - and to be honest these are the ones that I know cause me stress and having that reflected formally is helpful.

I guess I'm just left wondering what's *actually* different about my brain. But I guess none of us knows this in detail anyway!

But I'm also left feeling a little deflated and not hopeful that the ADOS test - with another wait, travel & day off work, and another wait after that - will help with anything.

There is also the issue of feeling a little like a fraud now, but I guess I can deal with that!

Parents

  • Hi, 

    Kindof in a similar position,  haven't had my final report yet but 
    dont think I have repetitive behaviours or fixed interests- or have major issues with routinues and change, and have being reflecting on that, 
    and realised something, that maybe we do its just not on the surface, and the subconscious stuff we do just do just cope hides it for example I don't like different flavours of food mixed so I put my food in separate plates and eat one thing at a time however the assessor asked to family member do I have a problem with food touching on a plate, they answered No. 
    Same with routines I avoid them in recent years because I get anxious when their broken, so now it looks I don't, but it means without them I am not functioning as well, 
     I cannot explain properly so not sure if that makes sense,
    also I guess its hard as we don't know the other side, like what is NT, what is ND exactly, 


     

  • in reply to Zakybi

    I think you've described it very well. My report says I don't currently have any obsessions or interests because on the day I said that I was a bit adrift and between hobbies ("special interests" are recognised as changing over a lifetime). Two months later & I'm throwing myself into Ham Radio again & really don't want anything to take me away from the time I spend in my den fiddling with radio gear. I even resent having to eat sometimes when I'm in the middle of building something. And yes, it's not just about fun, it's about my mind going to a special place of focus full of calm visualising antennas, electrons, radio waves....

    I've had obsessive thoughts in abundance over my lifetime, perseverating and ruminating in the pursuit of certainty until I'm worn out. But all that's visible on the surface is anxiety and me not being "present" in the room.

    I get really quite annoyed if the shop doesn't have the flavour of crisps that I'm currently stuck on.

    Also, my stress levels have historically been far too high because of things threatening my routine but I thought those stress levels were normal. Now that I've found a more sensible level of stress (one that won't kill me or make my life miserable or wear me out again) I realise that, yes, those things *are* a big deal. Perhaps I don't have a meltdown over a bag of crisps, but my stress levels spike for sure. Each day at work I eat a sandwich, bag of crisps, and chocolate bar - in that and no other order. And I realise I started that habit in 1989.

    My report says no stereotypical motor movements were noted (stimming?) but I remember flapping my hand around to rub my own chest at one point.

    I love listening to music, but I rarely acquire new stuff because I listen to the same stuff over and over for months (if you want a laugh, Carly Rae Jepson has been my go-to for a year now & I still listen to The Human League "Dare" which has been a companion for nearly 35 years).

    And of course, no-one hears the little songs that go round in my head when I walk, that I make up to synchronise to each footstep.......and appear automatically before I've thought about it.

    Enough evidence for Repetitive and Restricted behaviours? Difficult for me to be objective but I think maybe..

  • in reply to I'm done with Christmas Cards

    Yep, guess that the issues the assessor cant read the mind can only make comments on what they perceive outwardly which doesn't really give an accurate picture. but we got to trust the system I guess,

    My assessor told me I can add any information, I remember before my final report, maybe that's something you can do, let them know this extra information your thinking of, they should hopefully take it into account to put your mind at ease, I was thinking the same, I don't think I gave a full picture at the time because recovering from a burnout was in a meh mode but  I just cannot remember what I have already said.



  • in reply to I'm done with Christmas Cards
    I'm done with Christmas Cards said:
    Also, my report says something like "There are no other known neurodevelopmental or mental health conditions that explain your presentation".

    Maybe they just didn't consider all the other possibilities.

    It would be interesting to ask about the other ones we discussed here, to understand their thinking process, and why you do or do not meet the criteria for each one. It'll be interesting to know how they rule each one out. 

    But as firemonkey said, there might not be as opportunity to ask when they have a session scheduled with what they need to do in a limited time.

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  • in reply to I'm done with Christmas Cards
    I'm done with Christmas Cards said:
    Also, my report says something like "There are no other known neurodevelopmental or mental health conditions that explain your presentation".

    Maybe they just didn't consider all the other possibilities.

    It would be interesting to ask about the other ones we discussed here, to understand their thinking process, and why you do or do not meet the criteria for each one. It'll be interesting to know how they rule each one out. 

    But as firemonkey said, there might not be as opportunity to ask when they have a session scheduled with what they need to do in a limited time.

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