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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

  • Thanks all for your thoughts and suggestions. I've had a good think about where I am now, and summarised in this little table. Whatever the outcome, this has been a useful process.

    Potential diagnosis

    My thoughts……..

    I’m Neurotypical

    This is a possibility but by no means proven, yet. Even if it were proven (how?) it doesn’t mean that I don’t struggle with sensory problems and find social situations fatiguing. These are facts borne out by my ASD report, which provides some objective confirmation that my experience here is atypical.

    I’m Autistic under the definitions of DSM-V

    This is still a possibility. All the report noted against three criteria, one of which would have been sufficient to complete a positive diagnosis, was “insufficient evidence”. The ADOS test might yet provide that evidence.

    I would have been diagnosed autistic if DSM-IV were used.

    Similar possibility to same under DSM-V. I count 5 out of the 6 required characteristics in part A and meet the requirements of B and C.

    I would have been diagnosed Asperger under DSM-IV.

    I easily meet every criterion A-F except “B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities”. I have had a succession of solo, technical hobbies, but that didn’t feature in my report as evidence.

    I have Social (Pragmatic) Communication Disorder

    Doesn’t really fit. I had no language delays as a child and if anything was ahead in reading comprehension. I also adapt language according to my audience (certainly now - not sure if I did this well as a child).

    I have nonverbal learning disorder

    This is new to me and interesting. A lot rings true, though I do (think) I see the big picture and didn’t struggle with reading comprehension due to focus on detail as a child. Also doesn’t explain my sensory sensitivity, & EF traits, though these might have separate roots.

    I’m a Highly Sensitive Person (HSP)

    Possible - but at odds with my alexithymia?
  • in reply to I'm done with Christmas Cards

    Have you considered yourself against the ICD-10 diagnostic criteria?

  • in reply to raspberry

    Hi Raspberry, yes and I have the same problem as with DSM, in that I don't seem to have the clear evidence for "a restricted, stereotyped, repetitive repertoire of interests and activities". 

  • in reply to qwerty

    Seems possible - again it's all about thresholds "severe and pervasive impairment in the development of reciprocal social interaction" and qualitative judgements "symptoms more closely resemble those of autistic disorder, but do not fully meet all its diagnostic signs and symptoms". I must remember to ask about that one.

    Thank you :-)

  • in reply to I'm done with Christmas Cards

    maybe PDD-NOS? a person may have significant autism symptoms in one core area such as social deficits, but mild or no symptoms in another core area such as restricted, repetitive behaviors. 
    https://www.autismspeaks.org/pdd-nos

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