So, I was meant to make some changes to my blogging patterns: reduce the frequency of posting and stop commenting on my thoughts, as I had the idea that I already came up with all the thoughts that I could possibly have, but then it somehow turns out new things are still appearing on my mind and I have ideas for at least 3 posts so far, so I guess I will postpone the changes for now and see what happens.
At the end of last week I contacted National Institute for Health and Care Excellence with my views on current autism guidelines. I received the response very quickly from a lady from their Public Involvement Team who was very keen to talk with me, although she pointed out the guidelines cannot be changed at the moment. I was thinking maybe I could still join the Public Involvement Panel and I asked what being on it requires me to do so the lady suggested to set up a zoom call where she could explain things to me better and I thought that was a good idea.
I had that call today at 2pm; only two working days wait, which seems very short. Normally people are more busy than that, aren’t they? It meant for me that either NICE needs more autistic people on the panel or, possibly, they just have nothing to do. I went with the first explanation.
The call was ok, don’t get me wrong, and the lady I was speaking with expressed her compassion for what happened to me in relation with employment in Home Group; however she also pointed out that their work has to be based on strong evidence. And I get it, obviously. I am very analitical so that makes perfect sense to me. My experience is just one person experience, so it’s not a strong evidence at all. It may even be an exception from the norm.
However, I’m now wondering, if NICE guidelines are based on evidence, what is the Public Involvement Panel for? To give people the opportunity to vent, when they are unhappy about the care they received? So that they didn’t think about making a court claim? Maybe it’s NICE’s aim to have loads of public involvement advisors available so that people don’t have to wait too long for their turn to talk?
Also there is no specific panel related to autism; there’s only a general panel and I was told there may be nothing that interests me on it for several weeks in a row. Apart from that there’s also a committee related to autism but getting on it is much more complicated and I’d need to be able to reflect on other autistic people experiences. And the problem here is that, as much as I can see that scientists are constantly getting us wrong, I am unable to comment on why another autistic person behaves certain way, even if I personally know them, and therefore I don’t know what help they need. So I won’t be applying for that. Which is a bit of a shame… I coined that sarcastic phrase over the weekend ‘you are a constant source of entertainment Professor Simon. I do appreciate’. And now it looks like I can’t use it anywhere. Unless I’ll go back to targeting that man on twitter? (It was good fun, in a way).
Regarding the NICE panel, maybe that is what works for neurotypicals; maybe they know (or sense) the panel is for them to vent? Or maybe they don’t know but they in fact want to vent, so when they feel better, they naturally move on without reflecting too much on the purpose of that experience? I really do not now. But for me it always looks like there are so many opportunities to get help in this country, to be heard, and to change how things work, while it always turns out at the end that I’m a victim of an illusion.
While living in Poland I at least knew that I had to rely on myself. And what this country does is, it creates collective illusion of things being much better than they really are.
Will I ever learn?
However, when me and the lady from NICE were talking about my experience with Home Group I said it took me a few years to realise that the same type of bullying could have happened to a neurotypical person too, but they would have realised quicker that they are not going to win in that fight, and the lady said, not necessarily; sometimes people stay in a job where they are being bullied because they are passionate about what they do and want to change the world. And I presume that was what was happening to me at the time: I didn’t want anyone to suffer the way I and my family did because of my dad’s mental health breakdown (if you only just started reading my blog, I believe my dad was undiagnosed autistic, he worked as a welder and had mental health breakdown in his 50s. Probably due to all the sensory issues at work, but that was never picked up on. He never recovered. That was why I stayed in Home Group. I thought I’m going to change the world with my story. So far that didn’t happen yet).
So at least the conversation improved my social imagination a little bit. Yes, it’s possible that the same thing could happen to non autistic person as well. I may still apply to be on a panel though, I will decide on that later.