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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!

  • 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 Tinyexplorer

    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?

  • I'm done with Christmas Cards said:
    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.

  • in reply to I'm done with Christmas Cards

    you might be able to ask them whether you meet the criteria for SCD

  • in reply to qwerty

    I think I've seen this but will look again - and at the other links you posted; thanks :-)

  • in reply to qwerty

    Indeed - that's been the main learning for me throughout this process. I wish I had realised decades ago how hugely different people can be and that it's OK to be different - I'm going to celebrate being myself from now on and not worry about societal norms (I stand by my user name for e.g.!).

    Yes I've been to the Aspie quiz many times & even made my sequence of about 12 results into a video (which I've now lost unfortunately and it was a huge effort to make).

    I'm moving on to letting go of labels, and what I really want from this process is to know what areas of myself I can safely "develop" and what areas I need to take care to respect as they currently are; I don't want to repeat the experience of burnout.

    So I'm definitely in a "moving forwards" mood - which is good :-).

  • Anyway, I agree with NAS39248, whatever the results you have to accept your self for who you are Slight smile

    We all have varying quantities of different traits, having autistic traits or not is not a all-or-none thing. You may want to look at the Rdos Aspie Quiz https://musingsofanaspie.com/2012/11/20/taking-the-aspie-quiz/ Regardless if you are NT or ASD, everyone will score some NT scores and some ASD scores.

  • I'm not an expert on this, but it might be worth looking into the DSM-5 new diagnosis of social (pragmatic) communication (SCD) disorder. It is similar to ASD: https://www.autismspeaks.org/dsm-5-criteria but mainly focuses on the social communication aspect.

    It's possible that you might have gotten a ASD diagnosis under DSM-4, with the PDD-NOS criteria: https://www.autismspeaks.org/pdd-nos, which is the diagnosis they use for someone who has some but not all characteristics of autism or who has relatively mild symptoms. For instance, 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. 

    It's a bit confusing, because they also say that PDD-NOS was one of several previously separate subtypes of autism that were folded into the single diagnosis of ASD with the publication of DSM-5. But the new SCD seems to be a type of PDD-NOS, but is now separate from ASD. Since it's a really new thing, there is not enough established support at the moment: https://www.spectrumnews.org/opinion/viewpoint/no-one-needs-diagnosis-social-communication-disorder/ It might be a more useful diagnosis if/when support groups and interventions are more established. 

    Do you know whether your clinic is using DSM or ICD?

  • You may get a different result after the ados, but whatever the results you have to accept your self for who you are.