Worried if assessment came to wrong conclusion.

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?

  • I would love to be able to give you a definite yes they are, I can only speak from the experience of my youngest son’s assessment and I found it to be very thorough without being too overwhelming. There was quite a lot of pre assessment form filling and many opportunities to submit anything you feel relevant as well via the portal. I had kept diaries and made bullet points of struggles and traits which I passed on. My son had an assessment on his own but with us present (we were not allowed to answer for him) and then 2 weeks later me and my partner had a 3 hour interview. Once that was done 4 weeks later we had a feedback appointment with their findings and this was also an opportunity to ask any questions. We should get a full detailed report any day now and to include any recommendations for the school along with any reasonable adjustments required. 
    Maybe you could give them a call and have a chat? I called them a few times regarding myself and found them to be very helpful and informative. 

    I wouldn’t like to influence your decision as I think you have to go with what you feel is right and comfortable but just wanted to share what we experienced. 

    If I can help any further please let me know? 
    Also happy to let you know how the report reads once we receive it.

    Good luck 

  • Me just thinking if you could tell them the symptoms you had back then when you did this that made them highlight you as borderline are in the shadows or gone, and that the papers your old Dad gave them was less accurate to let them try you again. 

    Autism runs in my family and I know of one family member who at first got the wrong diagnosis and they later said they were wrong about that. This diagnose came about a period of time when the family member was going through something mentally. 

    When I had my burnout nobody told me they thought I was autistic. When it came up they wanted it separate from the burnout (that I would be healed, cleared from the burnout) before they thought they could look into it. 

    If you did yours while you are in the middle of suffering from depression and anxiety then it can be a fog to determine what is what and what goes where, but they will give you their best shot, they too can make mistakes. 

    I would present my case, and if they won't take the bid, then I would at least insist it being mentioned that you are of a different opinion today and wish to have it taken again. 

  • My own later in life autism diagnosis journey started in 2019 via the NHS, then Covid intervened and my assessment was carried out online via zoom, via a provider that was outsourced by the NHS on thier behalf in 2021 and the final diagnosis report was then sent to me via email - the therapist even admitted that as she was carrying out the assessment via zoom, rather than face to face, that she was not entirely sure that her assessment was entirely accurate, as the interaction of the assessment was limited to what she could see and hear via Zoom once any connection issues were sorted out in advance - aside from using possibly outdated models for diagnostic purposes in the light of latest research which the NHS seem either unable and/or unwilling to take on board, due to possibly incorrect perceptions regarding increased costs/funding issues, these facts as stated above, including given the fact that the diagnosis was outsourced to a provider outside of the NHS, further emphasise the need to have proper post-diagnosis reviews and assessments, which must be conducted face-to-face, which must become a basic legal entitlement of the person diagnosed and a basic legal requirement on the relevant providers, in this case the external provider and the NHS, on an individual “case-by-case” basis - this must be properly done to (properly) assess level and type of autism (and any other related Co-conditions) and to (properly) identify any relevant and appropriate levels and types of supports going forward, again on a “case by case” basis, not a “one size fits all” model that seems to be currently applied - and very often, this would result in significant cost savings for the NHS in the short, medium and long term, without requiring any additional funding (public funds - taxpayers money) as outsourcing NHS services to private providers is at much higher costs and higher risk of inaccurate diagnosis 

  •  Aspergers is to autism, what Pluto is to planets!!

    Pluto's autistic? I did not know that!

  • Hi Take5 and BeccaLovesBreakfast and Pixiefox and Number and all. 
    Got confirmation today from my medical practice that my GP is willing to refer me for a second opinion and that the required assessment documents are there for me to pick up!!! I’m surprised at this ‘cause I don’t think my doctor likes me at all. 
    Anyway, through the nhs right to choose program, I now need to tell them which mental healthcare provider/mental healthcare team I choose and in which region of England they are. As Take5 has suggested I may put Clinical Partners if it can be assessed using zoom or something like it. 
    Now that I’ve begun the process of reassessment I have, typically, began to see where the referral could fall down and the assessment not happen. They are justifiable concerns and could happen, but I guess I’ll just have to switch myself off and go through the motions as best I can. Do you think Clinical Partners are a good assessor to put down???

  • I do not recognise the need for 'symptoms' having to occur before 3 years of age being valid. Diagnostic manuals recognise that autistic traits might not be recognisable before social pressures - such as starting school - exceed the ability of the autistic child to cope with them.

    I agree Martin

    My son did not show much in terms of visible signs of autism before year 4. When social and academic pressures came into play he could no longer hide his anxiety. He got diagnosed 2 weeks ago. 
    Im glad he doesn’t have to fake life like I did now. 

  • 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. 

  • We used Clinical Partners. Like I said the experience with my son’s assessment was very professional but also understanding and a kind one. I have found out my referral made it through triage today and I’m now on my 10 month wait for assessment. 
    If you need anything else or want to know about the process I’m happy to help. I can only give information based on my son’s assessment as I obviously haven’t experienced this myself yet. 

    Take care

  • 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.

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

    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!)

  • Thank you for saying this. I always feel like a fraud, even if someone show evidence to the contrary. I was worried about posting anything when I feel that I “failed” an autism assessment. 

  • I think this is true. If you are above average intelligence then much of life and school can be ok and you can appear on the outside to be coping. This was me, until I hit A levels and university and employment. Life for me then became very very hard, and it continues to be so. Especially since my late thirties and forties I found that I had given so much previously and now had nothing to give. 

  • 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  

  • I do not recognise the need for 'symptoms' having to occur before 3 years of age being valid. Diagnostic manuals recognise that autistic traits might not be recognisable before social pressures - such as starting school - exceed the ability of the autistic child to cope with them.

  • Often what I feel is appropriate, turns out to be inappropriate. 

    Yea - I need this on a T-shirt.......and a hat......and a sign board !!

  • 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.

  • Hi Jonathan and welcome

    I'm what some call "self diagnosed" but others call " self discovered". My realisation came in my mid fifties and I spoke to my then GP, who had a mental health background - he advised me which screening tests to do and asked me to let him have the results, after which he agreed that I probably was on the spectrum, but advised there was little point to being referred for a formal diagnosis as I wouldn't get any support. He did however put the rest results in my records and assured me I could be referred later if I wished.

    I was very worried about going through the assessment process, which would be stressful for me, and then being told I wasn't autistic, as I didn't have any relatives who could give evidence about when I was a child and after 50+ years of life I had learnt coping strategies and how to mask, so much that I wasn't really sure what the real me was! 

    Anyway, this is to reassure you that even if you don't get a "professional diagnosis", you are still welcome on this forum. I was so pleased to be welcomed and supported when I joined, and I try to support others on here. Read other posts to gain knowledge that might help you, and ask anything you want.

  • Thank you for all this information, it is much appreciated. If you could share the provider info with me that would be great. There is such a difference national between nhs areas and the amount of positive/negative results. 

  • By the time I was due to be assessed my mum was dead, and my  father was living in the States. He couldn't see much that indicated I had autism. However at 88  , he may have been comparing me  to a much more severe group of autistic persons. My sister, who is 3 years younger than me provided evidence . As did my 'daughter' who had known me at the time for  36 years.It was reckoned that on the evidence provided the symptoms would've been present at <36 months

  • It is possible that one person has two conditions- ASD and BPD. If they think you have BPD, they shouldn’t fully eliminate ASD. I’ve never heard from any professional (so far) that I might have BPD, but I know two people who have BPD and I have/had good relations with them. The main difference between me and them is that they can just normally socialize and take part in social chit chat. I can’t because of overwhelm, it’s too much for me, too fast, I just wanna hide. I dont Care much about that how people perceive me, but im kinda afraid of myself saying something inappropriate and get scolded or weird look for that. Often what I feel is appropriate, turns out to be inappropriate. 

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