Non-diagnosis

I had the second half of my NHS diagnosis in January.

It didn't go the way I was expecting. I was told that I don't have an ASD. I'm still rather annoyed with that non-diagnosis, and disagree with a lot of what I was told.

Admittedly, the outcome looked likely at the start of the first session, whe the person conducting the interview said that their criteria for diagnosis was very high - they were looking to prove a disablility. When I said that I thought of myself as having abilities rather than disabilities, she nodded.  There are a lot of things that I have problems with - social interaction, taking things literally and the like, but I don't class them as disabilities - they're just 'me'.

The reasons I was given as proof that I didn't have an ASD:
1) I am in a long term relationship.  Yes, I am married. My wife also exhibits many Aspie traits. We have no close friends, only acquaintences. Actually starting the relationship was quite awkward.

2) I have held down a job for 25 years.  I swapped jobs every 6 or 9 months for my first 10 years of employment - I just couldn't hold one down, often being 'encouraged to resign' as it was easier than firing me.  It wasn't just swapping employer, but changing from Bank Clerk to Music Teacher to Signalman to Fruit Machine company security analyst to Compter Programmer.  I was lucky to find this job 25 years ago, as I have a very tollerant boss who seems to realise I don't like interacting much and have allowed me to sit in a corner getting on with my work without interrupting me too much.  Noise cancelling headphones have helped recently, as has telecommuting..

3) I pointed at things I was describing in a picture book during the session with the OT. Yes, my finger pointed to things whilst looking at the book. I do this if it's just me, but apparently this showed I was pointing it out to the OT thus displaying theory of mind.

4) I was quite happy chatting during the diagnosis, thus proving I have no problems with interaction.  I know that had the topic of conversation been something other than one of my favourite subjects (in this case, about me), the conversation would have been far more stilted and interrupted.

There was no consideration of the 30 pages of ASD traits that I'd submitted in advance. My very high score in the AQ50 and very low score in EQ60 were put down to 'having learnt how to answer it'.   I was answering the tests truthfully, as often as possible without considering the answers, and not trying to skew the results of the tests.   What would the point be in not answering them with the answers I feel.

Those around me are sure that I am an Aspie, as am I.  Even the other people I know who do have formal diagnosis think that I have a high-functioning ASD/ASC. 

If I can raise the money, then I may go for a second diagnosis, ideally with someone using a different diagnostic criteria; I don't think it fair to ask my GP to refer me to another NHS clinic.

But at the moment, I feel myself to be in a limbo. Grrr.

Any suggestions would be welcome.

Parents
  • The same thing happened to me, apparently , according to the lady testing me, because i made facial expressions showing that i understood what people are saying to me, means that i don't have Asperger's / autism.

    every online test i have taken comes out very high that i have autism, & on the NHS ladies diagnosis report, she said that i show many autistic traits, but she didn't consider me autistic ?

    that statement, to me, contradicts itself.

    I to would welcome any suggestions, is it possible to ask for a second opinion via the NHS ?

    I actually wonder if, due to budget constraints, the NHS has been instructed not to diagnose adults with autism where possible, & concentrate on getting the support for children, i was about 46 when i had the diagnosis ( i'm 48 now ),& i wonder if the way they see it, i have managed to get thru life so far, so to diagnose me now may be a strain on welfare resources ?

    the thing is, i haven't managed at all, & my life has been blighted by my mental health.

Reply
  • The same thing happened to me, apparently , according to the lady testing me, because i made facial expressions showing that i understood what people are saying to me, means that i don't have Asperger's / autism.

    every online test i have taken comes out very high that i have autism, & on the NHS ladies diagnosis report, she said that i show many autistic traits, but she didn't consider me autistic ?

    that statement, to me, contradicts itself.

    I to would welcome any suggestions, is it possible to ask for a second opinion via the NHS ?

    I actually wonder if, due to budget constraints, the NHS has been instructed not to diagnose adults with autism where possible, & concentrate on getting the support for children, i was about 46 when i had the diagnosis ( i'm 48 now ),& i wonder if the way they see it, i have managed to get thru life so far, so to diagnose me now may be a strain on welfare resources ?

    the thing is, i haven't managed at all, & my life has been blighted by my mental health.

Children
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