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What to do after a diagnosis is NOT confirmed after an assessment?

NAS39237

Hi,

I had my Autism assessment today after 3 years of waiting and the assessor believed my situation did not line up with the Autism Spectrum. His reasoning seemed to be that it is because I felt that it did not affect my life at an early age but certain debilitation have become more problematic in adulthood.  He mentioned the vague term of me having a personality disorder - more likely Anxiety. Yet, despite my obvious disappointment I don't know what to make of it - I've a list of Personality Disorders and common traits within them and nothing seems to jump out at a connection.

The problem is I feel that the debilitation I have are not just apparent when I am anxious. A lot of it is social based but even when I am with a friend I still cannot make eye contact among many other sensory and personality conflicts - I feel as if I simply don't qualify as an adult nor can handle any life skills expected as an adult.

I could go on further but the simple point is I am stuck, do I get another referral which I would have to pay for/cannot afford or look further into this vague term of personality disorder and go from there? I feel the debilitation getting worse, struggling to manage my work by the second. I was hoping to get through this get assistance but now I fee l am left  with nothing... & I don't know what to do...

Parents
  • As your situation so closely mirrors mine, I looked over some of the relevant info I have found again last night -please see below for the section I have marked in bold and large font, which clearly stands out as hugely relevant, it is most dismaying that the assessor did not take this into account. Also section C.
    I have discovered that it is quite common for girls to not manifest until high school, or uni. And girls have been known to have problems obtaining a diagnosis for this reason. It doesn't seem to be such a common thing for boys, but I don't see why a boy (such as myself) could not also learn to mask and camoflague if the demands do not exceed their capacity to cope. I may end up in the same situation as you, with failing to get a diagnosis due to ill informed assessors. How incredibly frustrating.
    I have some doubt as to whether I want to go ahead with my own assessment now, seeing how subjective and hit and miss the results can be. I already know and have already self identified. This may be enough for me.,
    This 'currently or by history' statement and it's meaning, is a relatively recent development in the research and understanding. If your assessor completed his training prior to this he may not be abreast of these developments. It was not a known thing the last time I looked into the whole topic myself. It is the reason that I have finally been able to self identify myself. Because now finally all of the facts fit together in my case,but only when taking this into account.

    DSM-5 Autism Diagnostic Criteria

    A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

    1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
    2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication
    3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in  sharing imaginative play or in making friends; to absence of interest in peers.
     
    C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).
Reply
  • As your situation so closely mirrors mine, I looked over some of the relevant info I have found again last night -please see below for the section I have marked in bold and large font, which clearly stands out as hugely relevant, it is most dismaying that the assessor did not take this into account. Also section C.
    I have discovered that it is quite common for girls to not manifest until high school, or uni. And girls have been known to have problems obtaining a diagnosis for this reason. It doesn't seem to be such a common thing for boys, but I don't see why a boy (such as myself) could not also learn to mask and camoflague if the demands do not exceed their capacity to cope. I may end up in the same situation as you, with failing to get a diagnosis due to ill informed assessors. How incredibly frustrating.
    I have some doubt as to whether I want to go ahead with my own assessment now, seeing how subjective and hit and miss the results can be. I already know and have already self identified. This may be enough for me.,
    This 'currently or by history' statement and it's meaning, is a relatively recent development in the research and understanding. If your assessor completed his training prior to this he may not be abreast of these developments. It was not a known thing the last time I looked into the whole topic myself. It is the reason that I have finally been able to self identify myself. Because now finally all of the facts fit together in my case,but only when taking this into account.

    DSM-5 Autism Diagnostic Criteria

    A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

    1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
    2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication
    3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in  sharing imaginative play or in making friends; to absence of interest in peers.
     
    C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).
Children