Last Friday I went to see my GP for some housekeeping tasks – little things that need to be dealt with but don’t feel important enough to demand a visit in themselves (this is my opinion, my GP probably wouldn’t agree ). We worked through my list: a prescription that I ordered that didn’t come through (sorry about that, I’ve added it to your repeat prescriptions), looking at a new drug available for psoriasis (expect it is really available because of cost and dermatologists not recommending it), and recording the pain in my fingers (and being sent for another x-ray since a few years back turned out to be over a decade). My GP mentioned my appointment with the psychiatrist and being referred onwards. I said that at the end of the interview that the psychiatrist said he needed to work out my scoring and would let me know if I would be referred on. I went on to say that I was pleased to have got that far and that no matter what the outcome was that I was content with how I had dealt with the issue. Is it possible I feel a tinge of pride in myself?

In fact my GP had received a three page letter, one working day after my appointment and showed me it on the screen of his computer. He had highlighted two things at the bottom of the letter, one of which seemed most significant, “I am of the impression that there is a high probability that Thistlethoughts does in fact fall on the austisitc spectrum disorder continuum.” My GP asked how I felt about that. I think I repeated what I said before, to be honest I didn’t actually feel anything. I have been sitting on this “news” for a few days now and I still can’t access any feelings about it, I draw a blank.

I returned home and put the printed out letter on the side in the kitchen folded closed (by the GP which seemed a bit strange – for my eyes only?). Two days later, it is quiet in the house and I feel I have the courage to look at the letter in more depth. There are some factual errors in it but I can understand the misinterpretation of what I said and it isn’t really relevant. I guess the phrase that sticks with me is “high probability”. I am used to doctors hedging their bets, and that is okay, I know nothing is certain in the medical world apart from death.

I look at my test results and find out that the doctor used the Ritvo Autism Asperger Diagnostic Scale Revised (RAADS-R). Being a numbers man this is something I can look into and what I find surprises me. Research on about 779  people (201 ASD and 578 comparisons) showed that everybody below a threshold of 65 was not on the continuum but everything over the 65 mark was. In statistic terms, there were no false positives (people being shown to be on the continuum when they weren’t) and only a few false negatives (people who were on the continuum but didn’t score over 65). It is saying that if you score over 65 (maximun is 240) you are almost certainly diagnosed as having an ASD. My score was 143. Wow, that is pretty clear cut.

I thought I might be relieved to know that I really wasn’t going mad (not a serious thought most of the time but there are occasions during a meltdown); I wasn’t relieved. I thought I would be relieved to have a label (can I claim to be ASD now?) that would show people that I wasn’t making things up, but I haven’t told anybody except my wife (who has read the letter) so how would I know? And there in seems to lie my true reaction, I don’t really want to talk about being ASD, Asperger’s, Aspie or whatever you want to call it. I have blanked it. Why, why have I blanked it?

And in writing that something is triggered. There is a fear lurking there, fear of what? I guess fear of revealing the inner me but a diagnosis doesn’t do that in itself, it just says that inner me exists. I wasn’t making up the causes of anxiety. I really was suffering. People tend not to want to hear about the abnormal though, they prefer consensus, they prefer the non-challenging. People? Anyone in particular you are thinking of?  It sounds like I fear the need to fight to be myself doesn’t it and maybe I don’t want to do because I don’t have the energy? And whilst that may be true, I think there is also a fear of losing what I have, a fear of providing too much information that people, that my friends, don’t want to hear. It is easy not to say anything because that is what I have learnt from a young age so is this another case of not wanting to get things wrong? Maybe.

I think this is also a case of extreme thinking or perhaps more like extreme unconscious worrying. I have a private side that I feel the need to protect but also want to bring to the surface. It is about integrating my external face with my internal one and finding a single entity that lives up to my values. I think most if not all people have inner cores that nobody really gets to know so I am not alone in that, I guess it is that desire to stop denying it exists, or fearing of its existence that I want to change. The change though requires social skills, talking to people, an area in which I am not very confident at to say the least.

So I come back to writing. And I come back to living my life. A life that continues with a label, a label that potentially changes everything but currently changes nothing because I choose not to use it, I choose not to advertise the fact. It may not feel like that I have a choice though at the moment, but looking back on today there were two occasions (maybe more thinking about it) when I could have used my ASD (I am not even sure what label to use) to explain the difficulty I was having. Twice when  communicating my need through emails and failing, where bouts of distress and semi-meltdown were triggered.

Is it okay to say, “look this feels too difficult for me to handle”, or “I am tying myself up in knots trying to decide what to do”? Those phrases don’t capture the thing I am going through though. I cease to function due to the pain of the distress I am going through, and I can’t find a way to solve it. I can’t get passed this task to do something more productive, to escape this pain. I take myself off to somewhere quiet, somewhere to think. The work day ends though and I do switch off. I do push the challenge out of my mind but it is only a push, I know I will have to face it the next time I am in the office.

Recognition, communication and peace, these are my core values. These are the things I have decided are most important to me. The recognition part is falling into place it seems, but in order to find peace I need to communicate and quite honestly, I just don’t want to at the moment. It feels too much.

 

 

 

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