Not receiving a diagnosis (trigger warning)

On Monday I went to get the feedback of my assessment to find out if I have ASD. I didn't receive a diagnosis.

Part of the assessment was about my upbringing. I had an unusual childhood. When I was about 18 months old my father had a serious accident that nearly killed him. This time was very stressful for my mother, who suddenly had three children to look after, a paraplegic husband to care for and bills to pay all by herself. My grandparents stepped in and helped to care for us, and my mother was grateful for the help on the face of it, but in private she took it as an afront, an accusation that she wasn't able to manage. Over the years this anger and frustration festered and to cut a long story short we fell victim to that as children in the form of abuse.

As a child I spent a lot of time in hospital. When I was a baby I had whooping cough, and I have had lung and airway problems ever since. 

The psychologist felt that while I definitely display some distinct autistic traits, it is more likely that these are caused by this double disruption to my development as a child, and so therefore she felt it wouldn't help me to receive a diagnosis of ASD. I disagree. I work full time in a stressful position and a diagnosis would help back me up with asking for reasonable adjustments at work. My boss is talking about making adjustments to my work practices, which is good, but who's to say those adjustments will remain in place after a year? Or after she's moved on? Or after I've changed roles?

So I'm going to wait until her report has been received, and then I'm going to look into the possibility of getting a second opinion.

Since Monday I have been feeling really down about things. I'm disappointed because this ins't the outcome I was looking for. I've also got other family issues going on - a row has broken out between me and my older brother and my mother has sided with him - because he never reported her for abuse. I did. And I would do it again.

Part of me feels like I no longer belong here because the assessment came back with a non-diagnosis. I feel like an outsider (not an unusual experience for me tbh) But here I found people that started making sense for the first time ever. So hopefully I can still be a valued member of this community.

Thank you for reading this far. I have Christmas presents to wrap before my other half gets home from work.

  • Graham I feel for you,so much going on for you,,,, I for one believe you are one of us, be happy here, keep talking as I for one connect with much of what you say,  a second opinion would be possible, how they could say a diagnosis was not a help I cannot understand,nit has obviously left you hanging without any stability, please don’t doubt yourself, you researched this as we all do, you know in your heart it fits, I am self diagnosed but know I am Aspergers, I intend on getting a diagnosis but reallity says with tight budgets it might not happen, I need that formal diagnosis to fulfill many answers and to have as my This is me like it or not, 

    So I for one want you to be here, 

    x()x

  • , hang in there. 

    I have been wondering whether the health service has been inundated "post-Packham"?

    I too see the answer you were given as quite possibly misguided. 

    Remember that not everyone on these forums will be  on the spectrum. Some are carers. Others are medical folk. It would also seem that at least one user is connected with a university project...

    So I don't see why you need to go away at all. If the forum meets your needs, there's your answer. ;)

  • But here I found people that started making sense for the first time ever. So hopefully I can still be a valued member of this community.

    You are more than valued here.  I have been worried about you since Monday knowing what you had scheduled. So many of us have gone through troubled times in the past (and some now).....and this can make it hard for others to unpick.

    Your past experiences have lead you to develop strategies and techniques to keep yourself afloat on a day to day basis.  When I first joined here (I am 42) I asked the question as to whether my ASPIE recognition could be linked to hormonal changes as I approach that age when things dry out and drop off.

    From my own readings of research ...our true selves come out what our existing strategies stop working so well and we end up sinking and then panicking and then seeking questions.

    From being here I have learned that there are great number of comorbid conditions - ASD, dyslexia, social anxiety, depression, addiction and loneliness.

    It is very much a chicken and egg world...what came first....

    Do hold firm and try to keep grounded.  It is an emotional time of year and a horrible time for you to wait for this report to come through, especially when you are off work and have more time to dwell.

    you belong here...dont let anyone take that away from you. 

    Ellie

  • Because there are no simple tests for ASD, but diagnosis by human who looks at tests as well as personal history, it's purely down to what that Psych thought on that day.

    I would go for a second opinion as the evidence may be interpreted in a different way. 

    Good luck.

  • You are absolutely welcome here Graham357. Before I went for my assessment, I knew, without a doubt that I was autistic; however, I also knew that there was a possibility that the assessment might not pick up on it and the result would be a non diagnosis. Which was an option I couldn’t really think about. I told myself I didn’t need an nt to tell me who I was, but deep down, I really did need that diagnosis. So I really feel for you. I told myself that if it came back as a none diagnosis, and they weren’t able to tell me what the problem was, I decided I would go for a second opinion or seek a private assessment. Whatever you do, don’t doubt yourself. It’s good that you came on here prior to the assessment, because at least you’ve got our support. Autism is so complex and the people doing the assessing are mostly not autistic so they won’t pick up on things that we do. You know yourself, stick to your guns and yes, you are very much a valued member of this community, a non diagnosis doesn’t change that. 



  • Grahem357 wrote:

    The psychologist felt that while I definitely display some distinct autistic traits, it is more likely that these are caused by this double disruption to my development as a child, and so therefore she felt it wouldn't help me to receive a diagnosis of ASD.



    So, not providing a diagnosis of A.S.D. on account of parental role disruption during your childhood makes sense enough, but not quite so much when it comes to having had the immunological infection of whooping cough (or Pertussis), what with the resulting neurological side-effects involved with oxygen deprivation and oxidative stress ~ all within a few years of your birth.

    Consider perhaps the following information via these links: 



    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1513329/

    +

    www.sciencedirect.com/.../S0009912009001465



    As also being questionable, is that you stated that the psychologist felt that you "definitely display some distinct autistic traits," and then, here is the questionable bit:



    Grahem357 wrote:

    Part of me feels like I no longer belong here because the assessment came back with a non-diagnosis.



    Maybe feel and think differently about this for at least a lifelong moment, being that there you are definitely having diagnostically distinct autistic traits (according to a psychologist at least) which could rather well explain why it is that you feel and have described as follows:



    Grahem357 wrote:

    I feel like an outsider (not an unusual experience for me tbh) But here I found people that started making sense for the first time ever. So hopefully I can still be a valued member of this community.



    Focus a little less perhaps on the "hopefully" then, and more as such on the "certainty" of actually being here a valued member of this community, i.e. this community of people who feel more as outsiders elsewhere but more as insiders here on account of having diagnosed and undiagnosed autistic traits, and those also who do not have autistic traits themselves but care for and or about those who do.

    As for:



    Grahem357 wrote:

    I work full time in a stressful position and a diagnosis would help back me up with asking for reasonable adjustments at work. My boss is talking about making adjustments to my work practices, which is good, but who's to say those adjustments will remain in place after a year? Or after she's moved on? Or after I've changed roles?



    What ever a psychological or medical practitioner puts into a diagnostic report about the character and or nature of their patient's condition or symptomologies ~ requires reasonable adjustments to be made by employers for such employees.



  • I would seek a second opinion to be sure.  ASD or not, you are part of the family on these forums and a label isn't going to change that.  We are all people at the end of the day.

    I appreciate that this hasn't provided the answers you so desperately need.  If the second opinion comes back as a non-diagnosis, do you have the energy to explore other possible conditions?  It sounds like something is going on that you need help and support with, it's just that you haven't got the piece of the puzzle that is going to assist with that.

    This is an emotional and traumatic time for you, so don't give yourself a hard time.  Be strong and seek the answers you need.

  • Looking at this as a whole from what I can see the psychologist is saying you do have developmental issues combined with something akin to post traumatic stress disorder. Hence whilst she’s said you’ve not crossed a magical line on a graph she is saying you are on the spectrum. Regardless, because of what she has said, and because of your own classification of yourself, you do fall into the boundaries of being disabled under the disabilities legislation thereby giving you the legal right to ask for reasonable adjustments. 

    Pragmatically it would also be a food hardly company that tried to remove them once they were in place, particularly with the psychologist stating that you do have things etc.

    So hang in there and just ride things out for the moment. Having or not having a diagnosis from a professional also doesn’t mean that much as the better judge of people is the collective assessment of people on here. I for one didn’t join the forum until I had a diagnosis as feared being called a fraud by the group as likeminded people will always spot an intruder.

    Andy