Round, Round

It is Monday and I didn't get the email from the lottery yesterday, saying I had won a large sum of money.

I have just got home, following diversions, from one of those meetings that leaves people like me frustrated beyond belief. It was a work thing, relating to my being absent from my position. I am currently on an enforced leave, because people think I am stressed out. After today's meeting and some of the things that were said, it is absurdly clear to me that this is more to do with how I am and what are referred to as "reasonable adjustments" than anything else, as well as what I refer to as Other People's Perceptions (or OPP).

I work in a very reactive and busy environment. Consistent and frequent changes to priorities have been identified as something that need to be avoided in my case. This isn't to day I cannot manage with changes in priority, it's more that what can be controlled (such as working environment, schedule etc) should be, because this will help me cope with times when things change rapidly and I need to be involved. People with autistic spectrum conditions (ASC) tend to operate on different frequencies to the 99% of the Neuro typical (NT) world: We don't respond to various stimuli the ways  that everyone else does. Things like work commuting, talking to people on the phone, noise, being touched - these are some things that we may not like and add a level of stress to our day that not people do not have to contend with. And we may have to interact socially, on complex levels (oh god, the horror). On top of this, those of us who can expend a disproportionate amount of energy playing normal. By that, I mean that we are able to "pass", behaviour-wise, like the 99%, tending to minimise our "tells" or tics really quite well. Most of us have them, from not making eye contact, to rocking, to flapping hands. I have an extra spectacular one: the second I feel any kind of strong emotion, like frustration, sadness, fear, I cry. Literally, the tears come out. Where I work, I cannot shut a door if I have a funny five minutes, but I am allowed to leave my desk if I need to. I also have a tendency to interrupt people, can be abrupt and also quite rude. It is not something I have a huge amount of control over. It's a response to either sensory or emotional overload. Another issue I have, like many fellow ASC peeps, is that I don't recognise stress very well (frog:water), the reasons for which are also complex.

Quite rightly, this is something that is kept confidential, meaning it is up to me whether or not I want to reveal it or not. In my experience, that is a double-edged sword, best left to another post. However what I will say, in brief, is that you often get sick of explaining why you are the way you are for the nth time to the same bloody person.

One of the things that came up today, was that "other people" feel uncomfortable when I am in an overload situation. Personally, I want to be left alone. What I don't want is to end up being called into an office or worse, sent home, because it's felt I'm not coping. Yes, that has happened. Unfortunately, when you have no ability to shut a door, people will see you. Another thing that came up is that people feel I am not "approachable". Partly, this is due to my using noise cancelling headphones to tune out the worst of the bloody racket I have to deal with and also because I tend to look like thunder at the best of times: my facial expressions aren't something I'm normally tuned into. Apparently people think I'm about to yell at them.

I have left this meeting, having spoken to the person who was there supporting me, having listened to people criticising the fact I have my tics and that my use of headphones (aka a reasonable adjustment that others in other areas use FYI) might not be possible, because. What does someone like me hear? "We cannot cope with you on a bad day and we have a problem with your self management method of reducing some of your triggers". That's what I hear. Apparently, as well, because other people are unaware of the impact conditions like mine have on people, they just see someone who is using their headphones, when they aren't allowed to. Who has a different schedule, but they aren't allowed to. I also mentioned before that I have explained this to people before.... yet they often still ask why you do something, why you can't learn not to. (On that note, FYI, I am neither a neurologist or expert in ASCs. I don't f***ing know. I DO know that there are some things I cannot change. Deal with it).

I have a lot going on with my health. I am having treatment that I hope will make me better at dealing with stress generally. Unfortunately, I'm not going to be "normal" - I am going to continue expending a lot of energy masking the worst of my tics, because that is what I have always done and it works. Until it doesn't.

I do need support though: sometimes, when people are asking me to help them out and do things, I need help prioritising things. I lack Executive Functioning: if everyone tells me something is urgent and needed ten minutes ago, I can't figure out where to start. If I do not understand how to do something, then I need to be given a proper explanation and possibly training. What I don't need is someone telling me that I need to figure it out by myself. Yes, that's happened.

I have had long chats with people about whether or not continuing in my current job (note: a lot of this has come around because I'm on the verge of being made permanent, because my work identified a need for someone to do what I do) is the right thing. I am giving benefit of the doubt to the other side and an opportity to them to see if they can make adjustments. Right now, I'm not convinced they will.

But right now I am pissed off and frustrated, because it always comes back to the same stuff. Everything is always great until it isn't and this is a common thing with people like me who are high functioning: we tend to pass, we tend to cope, until we don't and then people don't know what to do with us.

As for my initial sentence about the lottery: I said this, because if I do win it, a decent sum, then I won't have to worry about money e.g. Work, and then I don't have to deal with the world. Aka a bunch of ignorant [insert rude word of choice here] who don't get it.