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, 


  • , 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. 


  • 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.