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

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
  • 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.

    For high functioning people, those criteria are matter of interpretation by an experienced professional. The evidence will not be in your face. It is also a matter of your perception. It is normal that you consider everything about yourself as normal. So it's not as salient conceptually for you if it doesn't cause you trouble. For example, bullying caused me huge distress so I could talk about it, but routines don't cause me distress, so I couldn't talk about this unless Dr asks specific probing questions. I was diagnosed long ago so I can't advise specifically.

    Basically think harder about how this criteria for routine, repetitive etc manifests in you. It won't be the stereotypical example of Kanner autism.... it will be part of 'normal', but have autistic underlying mechanism. For example in women they often missed autism exactly for this reason. They now accept that it is not the nature of special interests or even not those restricted blabla they are, but their intensity. Hyperfocus. The huge distress and cost if routines are upset and the workloads for adaptation too high. . In the quote you already developed a few leads, work on them further. What else upsets you? What else do you do to avoid something? Make a list. I suppose you asked others- people always come up with surprising observations.

    You can discuss this at ADOS, the doctors can add that. Think also how this criteria could be demonstrated by observable behaviour at ados. If the Drs see autism in ados, that will override any unmet criteria before.

    I would say you don't want uncertainty and being left in in limbo in no man's land. Go for the diagnosis. You already identify with it, you meet most criteria. Go after it, otherwise it would cost you processing the lack of. It would create more problems. 

    My younger daughter was assessed for autism at 4 and was told to wait until it would become clearer... that meant 5 years without provisions at school which completely broke her. At 9 she got diagnosed. There is no shadow of a doubt now, but all those lost years for her were very damaging. You are not  growing like a child, but basically narrowly missing the dx is really unhelpful. So if you feel autistic, make a list and tell them, go after that criteria and behave at ados.

  • Thank you TE. This is what concerns me - that I may have failed to demonstrate anything against those remaining criteria because I'm still recovering from 20 years of faking NT behaviour (at great cost). I also found in 2017 that what I thought was a normal level of stress was actually about 9/10 on most peoples' scales. Keeping my stress to a true 3/10 maybe really *does* mean that I don't find that at lunch time the stock in the shop has changed and forced me to deviate from my usual sandwich, bag of crisps and chocolate bar, or that I rub my chest. I start to doubt my own judgement sometimes - trust the clinic's objectivity, or fear the masking effect of, well, masking?

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  • Thank you TE. This is what concerns me - that I may have failed to demonstrate anything against those remaining criteria because I'm still recovering from 20 years of faking NT behaviour (at great cost). I also found in 2017 that what I thought was a normal level of stress was actually about 9/10 on most peoples' scales. Keeping my stress to a true 3/10 maybe really *does* mean that I don't find that at lunch time the stock in the shop has changed and forced me to deviate from my usual sandwich, bag of crisps and chocolate bar, or that I rub my chest. I start to doubt my own judgement sometimes - trust the clinic's objectivity, or fear the masking effect of, well, masking?

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