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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

  • I just want to say thanks for sharing your journey. I'm recently self-diagnosed aspie (light bulb, eureka, epiphany!) and seeking a formal diagnosis through the NHS. It's been a few months and I have no idea where I am in the process... I share so many of your concerns so it's nice to feel 'in good company'.

  • in reply to blank_smile

    You're welcome - & thanks for taking the trouble to say thanks, it means a lot.

    There's a lot of mutual recognition of thought processes here, which is why I feel so at home & will be left feeling adrift again if I don't get a positive diagnosis - and I'm anxious because I think that's a significant possibility. I don't think I've ever found a group where I can relate so much with what most of the members are saying than ASD groups, but I'll feel like a faker / hanger-on if I get a negative dx.

    Many people have (rightly) said "It won't matter; you know yourself" which is true, but if I'm told I'm not ASD I'll be wondering if I'm making mountains out of molehills with the difficulties I do have, and inventing ones that I don't have. I'd just like to be able to say in company "I'm leaving now because I have to" and know that there's a good reason for that and I'm being reasonable not selfish and precious.

    I once likened the "Aspie realisation moment" to discovering the user manual for my brain that had been hidden down the back of the sofa since I was born, reading it and realising why I was draining batteries so quickly and the green light never came on properly. I now feel like I have that manual and it seems helpful, but I'm not sure it's for the model of brain that I have. I'd like that certainty reconfirmed!

  • in reply to I'm done with Christmas Cards
    I'm done with Christmas Cards said:
    I once likened the "Aspie realisation moment" to discovering the user manual for my brain that had been hidden down the back of the sofa since I was born, reading it and realising why I was draining batteries so quickly and the green light never came on properly

    I really like that analogy, I'm definitely going to use that!

    I have a well-trained NT mask that is telling me to reassure you with generic sayings to make you feel better about the situation. In the past I'd have done so without truly knowing why apart from 'that's what people do'. But here, where I am me and you are you, I can tell you that I understand why you are so concerned (especially as I'm so scared of the same realisation that somebody else will tell me I'm not autistic). I can also tell you that, in my humble opinion backed up by my new obsession of researching everything autism, that you are very clearly Aspie.

    You don't feel like this for no reason at all:

    I'm done with Christmas Cards said:
    I'm still recovering from 20 years of faking NT behaviour (at great cost)

    Again, I really relate to what you say about feeling like a faker. I can't shake that feeling either, I feel a bit of a fraud without a formal diagnosis. But like you, I feel like I fit in here. What I've learnt from this forum alone has pushed me back towards the light.

    I truly hope you get the outcome you desire.

  • in reply to I'm done with Christmas Cards

    Funny you should say that about the weekend question, that happened to me at work yesterday. I was asked how my weekend was, logically I started to describe what I did from when I finished work on Friday. My memory is always fuzzy so I pause, think, say 'erm' a lot. Then I realise what you have just said and quickly finish talking about myself to say 'but anyway, how was yours?' (They are so happy you ask!) I politely listen and smile whilst being talked at privately thinking 'come on, shut up now...'. I feel less and less able to deal with these types of interactions at work these days. I start to feel my smile fade and start to fidget in my chair, then I wonder where to look etc. They can probably see my transition from appearing social to a nervous oddball! 

  • in reply to blank_smile

    I didn't see anything odd in your words after the quote. If you're talking about switching to talking about you instead of me, I do that all the time. But I've also noticed that when most people say "hey, how was your weekend?" what they really mean is "Could you just shoot me a quick 'Fine thanks, how about yours?' so that I can tell you all about what happened this weekend?" :-)

  • in reply to blank_smile

    I realise that after quoting you referring to faking NT behaviour I swapped to talking about feeling like an AS faker (in the sense of a non-diagnosis). Whilst I am more than confident you'll realise this, for myself, I needed to point it out. Mainly because I proof read anything I post over and over and for that kind of error to get through is rare!! Plus it's this kind of over thinking and concern that is understood here.

    I think I covered that up pretty well.... :) 

Reply
  • in reply to blank_smile

    I realise that after quoting you referring to faking NT behaviour I swapped to talking about feeling like an AS faker (in the sense of a non-diagnosis). Whilst I am more than confident you'll realise this, for myself, I needed to point it out. Mainly because I proof read anything I post over and over and for that kind of error to get through is rare!! Plus it's this kind of over thinking and concern that is understood here.

    I think I covered that up pretty well.... :) 

Children
  • in reply to I'm done with Christmas Cards

    Funny you should say that about the weekend question, that happened to me at work yesterday. I was asked how my weekend was, logically I started to describe what I did from when I finished work on Friday. My memory is always fuzzy so I pause, think, say 'erm' a lot. Then I realise what you have just said and quickly finish talking about myself to say 'but anyway, how was yours?' (They are so happy you ask!) I politely listen and smile whilst being talked at privately thinking 'come on, shut up now...'. I feel less and less able to deal with these types of interactions at work these days. I start to feel my smile fade and start to fidget in my chair, then I wonder where to look etc. They can probably see my transition from appearing social to a nervous oddball! 

  • in reply to blank_smile

    I didn't see anything odd in your words after the quote. If you're talking about switching to talking about you instead of me, I do that all the time. But I've also noticed that when most people say "hey, how was your weekend?" what they really mean is "Could you just shoot me a quick 'Fine thanks, how about yours?' so that I can tell you all about what happened this weekend?" :-)