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.
I think you should ask for a second opinion. I'm not sure if you are entitled to one under NHS because I don't know the rules, but if you are, I think you should go for it. You want to be fair, but it would not be fair to you not to get a properly reasoned diagnosis. The reasons you were given seem lame and contrived. Just because you are high functioning doesn't mean you don't have ASD. It's little kids who are on the spectrum that have trouble with theory of mind, not so much with adults, who have learned to behave in the way that is expected of them. I would also point at pictures in a book, but that doesn't mean I'm not on the spectrum.
Thanks. I'd spent the last few months trying to persuade myself that maybe I didn't have an ASD. I think the final straw was yesterday when I went to pick one of my daughters up from Uni, and found myself flapping my arms onto my sides and bouncing in happiness at seeing her. Didn't phase her at all - her partner, one of partner's parents have HfASD as well so she's well used to many people But it convinced me that all things considered, the NHS clinic were wrong.Well, I say wrong - but it is possible that they were correct by their very, very narrow criteria. The big problem is that "if you've met one person with ASD, you've met one person with ASD" - none of us are the same.