Published on 12, July, 2020
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.
capers123 said:whe the person conducting the interview said that their criteria for diagnosis was very high - they were looking to prove a disablility
I find this a strangely illogical statement. Surely their is a criteria (listed in the appropriate DSM or ICD manuals) that says when the criteria for a diagnosis should be given.
One particular diagnoser (for want of a better term) should not have either higher or lower criteria since that would bring the whole process into disrepute. If you meet the criteria in the book you are autistic, if you do not, then you are not. Simples.
I would suggest you appeal against the decision on that basis - that they were using their own criteria not the set criteria in the relevant manuals. And I would also think you should report them to the relevant body (the HMRC if a psychiatrist, unsure if a psychologist but I'm sure it will be directed to the right place if you send a complaint to HMRC or the hospital/clinic where you had it done).
This is not to say that you would get a different result should you have a review of your diagnosis, but it would ensure that it was done correctly.
On some of the other points, none of them appear to prevent a diagnosis on its own. I think a lot of the 'not wanting change' is not wanting change inflicted upon us. I know when I initiate a change myself for whatever reason I am more happy with it, and that could explain your varied job history. Autism is a lot of conflicts, one can be 'quiet' or one can bore the pants off someone with conversation on one's own interest. And this can also be 'learned' behaviour - you may have 'learned' to talk although the result may not appear that coherent to other people and they keep wanting to leave (I am like that myself!)
It appears to me as if you have had the same sort of diagnosis interview that they give to children. Adults have had many years to 'learn' traits of NTs which doesn't make them NT. It just means they have learned a script. And this can manifest itself later in severe anxiety, suddenly being lost for words when the 'script' isn't there, stuttering and delays in response and meltdowns.
This is the reason that terms such as 'mild' and 'severe' autism have little reason. Someone with 'mild' autism often has their needs overlooked, someone with severe autism often has their abiities overlooked. Despite the fact that someone may not appear to be affected much, deep down there are huge problems.
And while I wouldn't think you want to be diagnosed as autistic if there is another reason for your being the way you are, I think you deserve to be fairly assessed so that you may get the right support.