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Worried if assessment came to wrong conclusion.

Jonathan

I’ve decided to join the online community to learn more about autism and ask for advice. I knew little about autism until I saw an NHS psychologist at the end of 2019. After a couple of sessions she said that she recognised signs of autism in me and an assessment was arranged. Then lockdown happened and I had to wait until August 2020 before I finally had my assessment. 

The ADOS assessment showed ASD levels of difficulty in my scores for Communication and in Social interaction and I scored above the cut off. Although, there was no evidence of hand/finger movements/other complex mannerisms, but there was some evidence of compulsions and rituals.

The ADIR was taken by my father as my mother had passed away 3 years before the assessment. I scored above the cut off scores for reciprocal social interaction and communication, as with the previous interview. However, I did not meet the cut off for restrictive, repetitive, stereotypes behaviours, with my father only indicating some difficulties with compulsions and rituals, and circumscribed interests. The assessors said that my father does seem to have a good recollection of your childhood and was able to compare your behaviour to that of my siblings. They concluded that there was no abnormalities present before 36 months of age.

The problem is that my dad was almost 79 years of age when he did the diagnostic interview and I know from talking to him about my childhood that his memory is poor and he does not remember problems I remember having. Furthermore, as my mother was my go to parent, he was unaware of many issues that I had.

Ultimately, the assessors concluded that the picture had not been as clear as I might have hoped. The symptom overlap of Autistic Spectrum Conditions and Borderline Personality Disorder/Emotionally Unstable Personality was highlighted as they believed I might have BPD instead os ASD and that there has been research to suggest that people with BPD may have as high levels of autistic traits as people with ASC. They concluded that this is possibly where I sit. 

Having now looked into the signs of BPD/EUPD ,I see it as less of a fit for me than ASD. It makes me wonder continuously whether I am on the autism spectrum after all. I just don’t know what to do. Has anyone got any advice?

Parents

  • I think that, for many of us, the complexities of our thoughts and presentations will always preclude the possibility of 100% certainty of virtually everything to do with ourselves?

    Add to that the ever changing criteria, names, conventions, assessment methodologies and "new found things" that seem to pop up in the "wellness and mental health" spheres, and you have repeating situational change......so even if there was 100% certainty of something yesterday, that does not mean it is still that way today.  Aspergers is to autism, what Pluto is to planets!!

    Add to that the ageing process, epigenetic influences, situational impacts, acquired illnesses (mental or physical) and we surely must face a reality that external evaluations of us, as individuals, are always fallible and/or will be ever changing - certainly in emphasis, if nothing else?

    However, I really do think that we can settle our minds......and that an external diagnosis can be helpful for that....but not the automatic panacea it may appear to be......because us autists are thinkers and over-thinkers.

    We take in data, and process it howsoever we do.  At the end of the day, I think that the old wisdom of "know thy self" is the only true way to find peace and tranquillity with ourselves, whether we have an "appropriate" diagnosis, or not.  Easier said than done.....but certainly achievable!

    Sorry if this is just non-targeted and unhelpful drivel, but I thank you for your post above because it is nice to read "real" and to feel a desire to respond.   I hope you stick around for a while Jonathan to share and explore.

  • in reply to Deleted User

    Thank you for your thoughtful post. I agree wholeheartedly with what you say. “Know Thyself” was of course written at the ancient Greek Temple of Apollo in Delphi (I love Greek myths etc!!!), but I am not exaggerating when I say that I find this impossible, all my life I have searched for measurable valuation/validation about myself. I recently did an intense gcse course and was so glad about my results because a number or percentage or grade seems something tangible. For me, everything in life does not seem this way. Ideas/views/information extracted from data: all of these seem like sand in the wind, sometimes a pattern appears but it is quickly lost and you are left feeling that everything is impermanent. 
    My sense of self is like this; I feel like a mist with no fixed form, hence my predilection for self absorption. When I then get a diagnosis of having a personality “disorder” it feels like a bad exam grade that will last forever. A personality “disorder” seems like a psychologist cop out, added to which it also is vague and unhelpful. The nhs as a whole seems to not value me when I have tried to get help, I’m always left feeling hurt. This is my experience of life: everything hurts. And I have no strong sense of self to fall back on when things get tough. This is not a nice way to live and I’m lost about what I can do to make it better  

  • in reply to Jonathan

    Well, for what its worth, I think you have an extremely accomplished perspective on yourself......and you express it beautifully;

    Jonathan said:
    My sense of self is like this; I feel like a mist with no fixed form,

    I tend to feel that you have alighted upon a truism......and I also KNOW how terrifying it is to feel that way!

    The manifestation of "mist" is dependent on many things - all of which are well outside its own control (think temperature inversions, relative humidity etc).......and yet, when it does form, it will be "noticed".....it always seems to change the ambiance of every "physical" thing around/within it.  Oh.....and lets not forget, "mist" can be a real pain-in-the-ass if you are trying to look at something in the distance, or are feeling cold!

    FWIW, whilst you continue to wrestle with yourself and your identity and your "sense of self" and "what to do", may I please offer you some kindly advice.  [As a tone-deaf autist, I will offer it anyway......]

    1)  In your "real" life, don't get too "I'm autistic" on everyones-ass........no one appreciates that, in my experience.

    2)  In your "real" life, don't get too "I'm BPD, OCD, ODD, ADD, ANY, THING" for the meanwhile, for the reason expressed in (1) above.

    3)  If your sense of self is that of mist....at this moment in time......then BE mist!  Embrace that feeling!  See what happens in your life?  Live your reality as you currently understand it.  Do that quietly, observe.

    4)  Whilst you may think that YOU must be wrong/unhappy , because everyone else seems so OK/happy,  PLEASE don't be too sure of that.  Falsehoods and chimeras are all around us these days......and I know that for a fact......because EVERYONE agrees with this point, although their perspective on what those falsehoods and chimeras ARE, seem always, to diametrically oppose?!

    Crikey, Jonathan.......I like you being here!  Again, apologies if the above is just "too much".........Welcome to my world!!.....but rest assured that I intend all the above with brotherly love (even if I miss-the-mark=common for me!)

Reply
  • in reply to Jonathan

    Well, for what its worth, I think you have an extremely accomplished perspective on yourself......and you express it beautifully;

    Jonathan said:
    My sense of self is like this; I feel like a mist with no fixed form,

    I tend to feel that you have alighted upon a truism......and I also KNOW how terrifying it is to feel that way!

    The manifestation of "mist" is dependent on many things - all of which are well outside its own control (think temperature inversions, relative humidity etc).......and yet, when it does form, it will be "noticed".....it always seems to change the ambiance of every "physical" thing around/within it.  Oh.....and lets not forget, "mist" can be a real pain-in-the-ass if you are trying to look at something in the distance, or are feeling cold!

    FWIW, whilst you continue to wrestle with yourself and your identity and your "sense of self" and "what to do", may I please offer you some kindly advice.  [As a tone-deaf autist, I will offer it anyway......]

    1)  In your "real" life, don't get too "I'm autistic" on everyones-ass........no one appreciates that, in my experience.

    2)  In your "real" life, don't get too "I'm BPD, OCD, ODD, ADD, ANY, THING" for the meanwhile, for the reason expressed in (1) above.

    3)  If your sense of self is that of mist....at this moment in time......then BE mist!  Embrace that feeling!  See what happens in your life?  Live your reality as you currently understand it.  Do that quietly, observe.

    4)  Whilst you may think that YOU must be wrong/unhappy , because everyone else seems so OK/happy,  PLEASE don't be too sure of that.  Falsehoods and chimeras are all around us these days......and I know that for a fact......because EVERYONE agrees with this point, although their perspective on what those falsehoods and chimeras ARE, seem always, to diametrically oppose?!

    Crikey, Jonathan.......I like you being here!  Again, apologies if the above is just "too much".........Welcome to my world!!.....but rest assured that I intend all the above with brotherly love (even if I miss-the-mark=common for me!)

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