In no particular order, here are the things that AS means for me in my life.
Uncertainty is a huge issue for me. Maybe the biggest. If someone says "maybe I'll do this" I will spend the next indeterminable time period repeatedly going over the options of what will happen if they do or don't do that thing; how my day will look, what will I need to expect, what will I need to be prepared for, and I will be constantly questioning "does that mean they will do that, or they won't do it or they themselves don't know yet (in which case, again will they or won't they end up doing it?)", trying to work out the probability of each of the myriad possibilities of how the day will run. And the thing they are doing could even just be "I might go and buy milk" or "I might make a cake." If there is any uncertainty at all, the issue will remain in my mind as unresolved, like a flagged or unread email, demanding attention until resolved. If there is any emotional involvement with any of the options the chasing of thoughts escalates and often comes out physically in my body as feeling sick (if worried) or in repetitive gestures like finger wiggling or fist clenching if excited (though I think I manage to keep these down to only in private).
Another aspect of uncertainty is uncertainty of people's expectations. I need
clarity in what is expected. I am very happy to do a task for you if I know exactly what you want, but if there are options and I have to guess, it becomes very stressful for me. If I know something is expected but I can't deliver because I don't know what or I don't have the skills, the situation seems inescapable to me and this has been the trigger for quite a high percentage of my 'shutdowns' or whatever you want to call them. The same applies to what is expected of me in a certain situation, for example when I am unsure what or how much I am expected to say, whether somebody is expecting a reply or whether they are making a joke.
Change is difficult to deal with. This can be change in my surroundings, like a rearrangement of furniture (even just a turning around of something on the work surface. Why? Why change things if they're fine? It's all wrong now. Something inside reacts and I don't even know what. It's like my whole world has been turned upside down. I can't work out what it is that I feel, but it's wrong. If someone can explain a reason for the change: e.g. "it makes more space on the surface" this can help) or a change in my expectation for the day. I think this could be linked to uncertainty, because if one thing has changed, how do I know I can rely on anything else to be as expected? As a side note, for me, big changes are often easier than little ones. This is probably because they are usually less sudden, more thought through, more expected and more prepared for. Somebody parking their bike in "my" space is completely unexpected, hits me just when I'm preparing to settle down into my own safe world after people-ing, and makes me want to cry, and sometimes shout and bang (again, why would someone do that?). It takes a while before I come to terms with the fact that I could park my bike elsewhere, and even then that space is wrong and my insides are wrong.
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| Searching for something else I came across this scale. I wish I could use it to show people how I feel about change. Sometimes I am at least a 7 on matters where other people may not have even realised they have made a change. |
Inconsistency makes me all wrong as well. How does it not stick out like a jack-in-the box popping up in your face to people? It might be spelling inconsistency in a document or inconsistency of policy/treatment of people (this is touching on
unfairness, which is entirely inexplicable and unacceptable for me), or things moving about (where has someone decided to keep the washing up liquid at work today? Why can't it just live in one place?!), or people saying one thing and doing another. I want to scream and shout "what are you doing? How do you think this is OK?"
The Plan is everything. The first thing that happens when my brain switches on in the morning, before my eyes open or I think about anything else, I work out what day it is and what is happening that day. I flash through what to expect, whom I will see and interact with, roughly how those interactions will go, what I need to take with me and wear (this I will have prepared the night before). Sometimes I know there is a question mark about something, for example, I am going to work but I don't know for sure whether we will be swimming in our swimming session or whether a certain child will be poorly. If I know there is a question mark, I can deal with that, but if something changes unexpectedly that can be more difficult, depending on the change and its implications. The most difficult ones are changes that affect my 'down time' or 'me time': if The Plan was to have the evening in alone and this changes, for example I have to go out unexpectedly, I will be quite stressed about it.
If somebody suggests something that isn't in The Plan I tend to automatically react in the negative. Don't be ridiculous, of course we can't do that. If I have time to adjust, however, I might come round to the idea. Which brings me to:
Time. Because The Plan is so important in keeping me calm and functioning smoothly, I need time to adjust The Plan in my head if it is going to alter. Some changes I can write in fairly quickly; others can take days or even longer. If you want to go out for lunch, giving me at least a day's notice is probably a good guide.
Also under time, I need regular time to myself. I think of my stress levels, or busy-ness levels (maybe arousal levels in scientific terms?) on a scale, maybe 1-10. On a normal day at work I'm maybe on a 5; a big social gathering of people I don't know would be a 9 or 10. Relaxing at home with my husband is one of my favourite things and bring me down to maybe 2, but the only time I'm 0 is at home on my own. I'm completely me, just being, and that needs to happen a couple of times weekly to allow me to manage the rest of the time.
I also need time to get to know people and feel comfortable in situations. I probably won't call you a friend until we've spent quite a lot of time together and shared quite a lot (and I don't share with just anyone!). I have to learn to trust people and learn whether new situations are safe.
I'm
pernickerty, picky and fussy about a lot of things that seem entirely insignificant and baffling to other people. Also on being fussy, certain textures, smells, sounds I really dislike. They don't usually cause me physical pain but make me want to shout or cry or flap and stamp or shake the feeling off my fingers. Bad grammar makes me twitch and it's hard to not say anything about it. The washing should be hung up just so, every fact should be accurate and precise (my
memory is annoyingly better than a lot of people's, so when they recall a past event wrongly it's very bothersome, and vagueness is just messy in my head). Things should be where they belong, our days should run according to the timetable in my head (The Plan, I suppose), and everything should be
predictable.
Related to this, I can be a bit of a perfectionist. If I'm going to do something I want to do it properly, to the best of my ability (or better, quite often!). This means I can often be unsatisfied with my work or not seem to value it or take pride in it, whereas it may just be that I'm not quite satisfied that it was perfect, or I'm disappointed that I couldn't make it as good as I wanted. It can also mean that I'm not the quickest worker on the block. The job might take longer but it will be thorough and accurate if I have my way. I also struggle with guilt when I think I could have done something better and this goes for relationships as well as tasks.
I'm
honest. You can generally rely on me to tell the truth. Usually whether it's wanted or not. I try and be socially acceptable in this department, though I don't get it right every time. But I won't lie to you and will always give my honest opinion. You can rely on me to be
loyal to my friends, do my best to
do the right thing, be
fair, and look after the underdog.
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| Not me. I only dream of such an attitude! |
I have some
interests. I'm quite interested in them. I like to spend a lot of time pursuing them. They are calming and predictable and very enjoyable. I find it difficult when I can't do them.
I am very
caring. I want to look after people and for them to be OK. I hate it when people are mistreated or sad. It doesn't necessarily make
me sad, though it can do, but it is wrong and I feel a very strong sense of care or pity for the person involved. I will be there for the person that needs me, especially if I know how to help (annoyingly, I don't always -
understanding and responding to emotions can be tricky - but that has been covered in other posts). Sometimes all you need to do is sit with somebody or give them a hug.
I like animals too. Weirdly, I feel like we sort of understand each other. And they are nice to cuddle and don't ask questions or talk to you. They aren't complicated!
Decisions are difficult (but there's a separate post for that). I see so many aspects to consider, and so many pros and cons.
I sometimes get
overwhelmed (by my or others' emotions, or by a lot of social effort, or something unexpected) and need to get away. If it's too sudden, I might have a bit of a shutdown, which for me often includes crying and shaking. I can't talk to people and I can't look at them for a while afterwards (my eyes are usually shut during most of it). If it's not bad enough to cause a shutdown (which thankfully I don't get too often), I can take some time to myself at home alone and watch some TV, read or think to recover. Sometimes being outside in nature alone can serve the same purpose.
I look at
language a bit differently. I rather like it, and sometimes I like to play with it. I understand most simile and metaphor, and quite like them really, seeing them as a bit of an art, but I often take things literally if I don't recognise them as figurative language. If there is more than one possible interpretation of something, for some reason I don't always see the one most people see first first (my Mum says I always seem to pick the least obvious interpretation). People can think I'm being awkward, but usually it is me genuinely having to search for the right understanding for the context. I like humour and like to make people laugh. I used to be rather a punner but not so much any more, but I still enjoy playing with language.
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| "As much use as a chocolate teapot" is one of my favourite similes :) |
Creativity is something I have a love-hate relationship with. I love the idea, but I'm actually not very good at it and find it quite scary and very pressuring and stressful if someone is watching or expecting a result. This is quite entertaining when you think that my passion until I was about 20 was music, and from then on, dance. I love to do them, but I cannot create them for love nor money. Improvisation always made me feel sick and clam up. I can't compose for toffee. Or even chocolate, which I prefer to toffee. I could never write a story from my imagination: in primary school I dreamt
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The story was about an
escaped hamster! |
up one story based on true events and adapted it to fit every brief. But I really do appreciate the creative arts. I can get lost listening to music or watching dance and in a room on my own I put creative expression into music or dance where the notes/steps have already been written. Particularly with dance, though, I also appreciate the technical side more than perhaps most enthusiasts. I would watch class with at least as much pleasure as a performance and I don't need a story to enjoy a performance (it can even become overwhelming if I let myself be drawn into an emotional story eg. Swan Lake or Giselle). I find it very difficult to encourage the children in my class with role play and imaginative play because I can't think of how to extend what they're doing.
Nearly forgot about this one as it's so obvious, but
social situations are also a challenge for me. The more people the worse it is, the less I know them the worse it is, and the more expected of me/attention on me the worse it is. I worry beforehand about whom I will talk to, what I will say, what I will do if I can't find the answer to either of these, when and how I will leave, whether I will say anything inappropriate, whether I will be boring, whether I will say enough or too much, whether I will look ok, whether I will do any silly things with my body, etc etc. When I am there I am still worrying about most of these things, especially
how to carry on a conversation and things like that. A lot of worrying and feeling sick, and I will be tired for several days afterwards if it was a big one. It is just exhausting making sure you're doing everything right!
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| Help! |
Small gatherings of up to 5 or 6 where a family member is at least one are manageable and don't put me down on social energy for too long, and I even enjoy these sometimes.
In addition to the feelings brought on by the event itself I also struggle with feeling guilty for not enjoying an event which is obviously supposed to be pleasant, which somebody has put on for everybody to enjoy and maybe even partly for me, so then I may have to make sure I adequately persuade that person that I have enjoyed it, even while trying to recover from the strain it has put me under.
Even just a break in the staff room or a meeting in the corridor can count as a stressful social encounter: what do I say? Where do I look? How do I finish the conversation? Is it bad to sit and not say anything? Can I make my drink last the whole break/Do I look daft sitting not talking with an empty cup? Is it OK to join in someone else's conversation/nod and smile as though joining in with it?
Communication can be difficult. Although I am a very language-minded person it can be quite difficult to express myself properly about important things. Often I only think of what I should have told somebody or asked them quite a while after a conversation has happened. This can mean I can seem rude unintentionally, I can miss out on opportunities, my opinion can be overlooked (well, not expressed to the relevant party rather than necessarily overlooked by them) and I can become frustrated. Sometimes I don't know what I want to express, other times I don't know how to express it, and others I just can't make myself do it at the right time and place. I work better in written communication where I have time to consider matters, think about my real response to them and formulate that into something that will be understood properly by others.
I am
funny and
silly and
clever and
quirky. I have a great time with a few good friends and we enjoy each others' company. I might not be everyone's cup of tea but if we get along we really get along. I stick by my friends and we help each other through all sorts and have a lot of laughs on the way.
These are just the main ways I can think of at the moment of what AS means to me, for my life, but I feel like I could keep writing forever, or at least enough to fill a book! I might update if other important things come to mind. I also have a big list of quotes from a few books (Asperger's Sydrome, A Guide for Parents and Professionals, T. Attwood; Inside Asperger's Looking Out, K. Hoopmann; and Finding AS in the Family - A book of answers, C. Lawrence) that I felt really were pertinent to me when I was reading around before diagnosis, if that is of interest to anybody.
It's like there's no room inside for the extra words or sounds or touch or visual information. Any input seems like too much. I don't get the thing where everything mashes together like you see in the YouTube simulations of sensory overload, and I would rarely have a meltdown or shutdown: I would control my response and reaction while with people, to present one that is outwardly reasonable although it may seem a bit irritated for no apparent reason.To any onlooker, it's probably a subtle, almost unnoticeable change, but inside I'm getting fuller and fuller and it takes more and more effort to keep the lid on. I suppose it's the background social/emotional/general stress/anxiety levels that are making me full up, but the result of that is that I can't tolerate any physical stimulus either.
