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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

    Hi again Jonathan, 

    Just wanted to say that I too like measurable results, and that's why I prefer my AQ50 score, which is a tangible result - 42 - than someone saying to me something like "you have autistic traits, but they don't affect you enough for you to be classed as autistic" . How can someone judge how much things affect others, when masking is in play? How much do they really understand if they haven't got an autistic brain themselves? How much knowledge do they really have about autism when the field of knowledge, particularly regarding women and older people, is still evolving?I

    Also, I refuse to be labelled with a disorder. I'm just me, and you're just you. 

    "Autism" is from Aut - oneself, and "ism" - a state of being. So autism literally means "a state of being oneself" - That's why we don't fit in.

    Look at neurotypical people, and you see people who have moulded their identity when young (usually in their teens) to fit into several social groups - their identity labels include gender, occupation, place of residence, hobbies, sports, religion, political affiliation, etc. and their social groups often include family, friends from school/uni, colleagues, neighbours, and members of clubs or groups they belong to. They can make small talk and read non verbal signals to judge quickly if they fit into a group, or whether a person they have just met is part of one of their identity groups. This is beneficial from a social viewpoint, as they become part of groups with the same views and aims and gain a sense of belonging.

    Autistic people often have interests which are different from their family or peers, and are of deeper intensity than usual. I think that autistic brains search for something that will provide interesting data to get absorbed in, rather than looking for something to do to fit into a group. It's why we find relationships/friendships difficult.

    However, having this forum to connect with other people who have intense interests is great for people who have autistic brains - we can go on at length without worrying if we might be boring someone, and we often learn new stuff. 

    Your feeling of having no fixed form resonates with me, as I have changed so much over my lifetime and had many different interests. You are evolving.

  • in reply to Lotus
    Lotus said:
    Your feeling of having no fixed form resonates with me, as I have changed so much over my lifetime and had many different interests. You are evolving.

    What a fantastic way of putting it. 

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