I thought I would write down, in no particular order, how I deal with the world, and my thoughts and perceptions. It can be hard to disentangle what is autism from what is simply me, and I am not going to try and fit this narrative into any schema. Instead I will just write in stream of consciousness style, and then people can make of what follows as they like (hell, I’m still trying to work it out myself!).
My life revolves around my interests. It’s as simple as that. I need life to be ordered, predictable, perfect, as it should be according to my interests. My interests are my religion. What interests?
Cooking. I spend a lot of time thinking about food, which has to be eaten in peaceful surroundings so that I can focus on each perfect sensation. What will I eat today? As I make most of my meals from scratch, this is no simple matter. I spend colossal amounts of time searching recipes, categorising them ( pininterest has lately become my new hobby), photographing and logging what I have already eaten, writing recipes down in my various recipe note books, worrying about the recipes I still need to try, and constantly feeling as though I am running out of time.
Time. This menace constantly surrounds me. The feeling that I have so many things to do, so much to complete, but never enough time to reach perfection. Don’t get me wrong, I know perfection is humanly impossible, but my brain still craves order, and so I feel constant pressure and a sense that things are running out of control. Having synaesthesia adds to this issue, as I see time in a textured, real, coloured way that is hard to describe. I love my synaesthesia in the sense that it brings order, but it also constantly reminds me that things are changing. I will worry about events that are taking place in two or even three years time, if they’re important to me and threaten to change my routine.
Another interest is clothes. I enjoy wearing clothes that look nice (I have a strong aesthetic sense, and love looking at beautiful objects and colours), and feeling that I have got at least one thing right in my life. I enjoy feeling that other people might like my clothes and judge me favorably, particularly as I feel really pleased that I have finally worked out my size. Clothes add to my sense of identity, by making me feel that I belong to a particular ”genre” (bohemian or colourful). Clothes also add to my sense of order. I know exactly what clothes I have in my wardrobe, and they are all treated with tender loving care. Yet I obsess about my clothes. I can’t bear the thought that they will get damaged, particularly the newest clothes, which can only be worn in a particular order. When I’m not seeing people, I will alternate between a few very old fleeces, three jogging bottoms, and one or two pairs of jeans, in the colder months. When I see people I will wear my newest clothes, the clothes that make me feel competent and well dressed. But when I put them on, I worry that I might damage the zip or that a seam will come loose; even a small blemish will make me feel that the item has been ”messed up” and is no longer the same. I obsessively go over the contents of my wardrobe in my mind, worrying about what other clothes I might need to buy as insurance policy in case the clothes I do have get tarnished. Currently I’m debating whether or not to get another pair of jogging bottoms to add to the two ”perfect” ones I currently have, because three is a good, complete number. But the other part of me worries about spending too much money, and says that I should wear and appreciate what I have, and spend my money on other things.
Money. I hate spending it apart from on things that add to my sense of completeness, but even then I worry because the purchase negates something else I could have bought instead. I mainly spend money on my three interests: food, books, and clothes. Recently I have been trying to spend it on other things, notably some new cups and dishes. I am now obsessing about my cup collection, and whether or not I can justify adding to it, particularly as I find it so hard to even use new things. I worry that my money will run out – the pressure of time again, and the fear of impending loss of meaning, loss of anchoring interest memorabilia, and consequent chaos.
Then there are books. I need to read as much as I need to breathe. My reading routine takes place most mornings (apart from when I’m between books and have planned a non reading space, such as today), and I don’t feel complete until I’ve read for two hours minimum. I have so much to read; what if there is not enough time to read everything? What order shall I read my books in? Every book I read entails a loss – a book I could be reading. And no-one is there to tell me if I’ve got it right as only I can decide what to read. I mainly read philosophy books or books that help me make sense of the world, particularly the sense that everything is chaotic and incredibly scary.
I’m scared. All the time. I’m worried about my breathing, my health (does that pain mean something terminal?),uncertainty, noise, germs, what will happen next, accidents… But this fear is invisible – no-one can see it except in the occasions when a phobia is triggered (dogs, for example), and I react by running or whimpering. The fear is internal. I can be smiling and even laughing, but fear is there just beneath the surface. I can’t relax fully, ever, as even when I feel relatively relaxed, I know that the perfection won’t last. Indeed, precisely because I know it won’t last, it feels almost wrong to experience it, as too good to be true. When will the next noise intrude, threatening to distract my calm.
Noise is a major source of anxiety. I need to focus intensely on my interests in order to feel a sense of order and that life means something , but noise interrupts my thought process, is invasive and discomfiting. This does not mean I can’t deal with all noise, as if the noise is predictable, occurs in a space where it’s expected, and particularly if I control the noise source and can escape easily if it gets too much, I can cope. The emphasis here is on unpredictable noise , particularly noise that is generated by other people and that offers no escape. I then feel imprisoned in a cage, and I can’t block the noise out, which means focusing becomes increasingly difficult, resulting in adrenaline surges and consequent tension. This feeling of being trapped, with resulting anger and powerlessness, is most acute when the noise occurs at home, which is my space. I am very territorial – my space has to be completely under my control, and that includes what sensations I experience.
Noise affects my sleep. I rarely sleep deeply enough to feel completely refreshed because of noise and light intrusion. I guard sleep so zealously because even a slight reduction in sleep makes my anxiety levels go super high, and it is 10 times harder to focus and achieve my life goals, then it usually is, and even on a good day I struggle. Consequently I need to go to bed at more or less the exact same time every night, and if I don’t keep to a routine (this also involves eating my meals within the same time frame), I feel very disorganised and chaotic.
I struggle to know what order to do things in. I love order (I keep saying that!), but find it so hard to make things as neat as I would like them. I have a few super intense interests that all need tending to, but I feel that by attending to one, the other gets neglected, which makes me stressed. Even if I write things down, I can still feel disorganised and worried because there is so much to think about!. It can be hard for me to move from one activity to the next, particularly if the former activity required intense focus.
The world outside my home is incredibly overwhelming. Crossing roads feels as though I am staring death head on, as I literally feel that at any moment a car might knock me over. Cars come at me suddenly, they are noisy, and incredibly distracting, as well as smelly. This is also why my home needs to be a silent sanctuary, and a place where I feel relatively safe and can recharge.
In the morning I’m a slow riser unless I know precisely where I’m heading (such as when I am on a mission to get somewhere at a particular time because my strong interests motivate me). Unless a strong interest is doing the pushing, it can take me at least an hour before I can slowly face the world. I am most able to get things done within a small mid morning window, and by the afternoon I just don’t have enough energy to get much done.
I can only focus on one interest at a time. When I’m in the swing of complete focus (such as I am now, writing this), I have to complete it, and can think about nothing else until it has been finished. This is why, when I am reading a complex book, I cannot do any tidying until I have finished the book, because all my mental space is taken up with getting the book finished. Even when I’m not reading the book, I am still thinking about the book and worrying about completing it within a certain time frame.
My interests come before other people. Don’t get me wrong, I do enjoy meeting particular individuals one to one for circumscribed periods of time. For example, I look forward to seeing my support worker each week because I enjoy talking to her about my life and interests. She will listen to me, because it’s her job to support me and follow my lead. This element of control makes the relationship far less stressful than a conventional friendship. I can be my best self in this environment, because it plays to my strengths, and so my social difficulties are less apparent. I have learnt over the years that it’s important to reciprocate, although this does not come naturally to me, because I just love talking so much about my interests. However, I do genuinely enjoy collecting information about people (this adds to my sense of order), and so any reciprocity I do display with my support worker, is genuine (hard though it can be to listen when I’m dying to talk!). I try my hardest to listen, and my listening skills are something I’m motivated to work on because I’m genuinely curious about other people. However, I have an internal people jar, that gets full quite quickly. This means that, as much as I might want to listen to another person, the jar can flow with too much information, meaning that I zone out. This frustrates me, and I will then want to ask them again what they just said, or alternatively worry that I’ve missed out on information that might add to my sense of order on the people front.
Despite the fact that it can appear that I have good social skills, I really struggle to navigate relationships other than professional ones. Friendship is something I find hard to understand, and organising social meetings or investing in the social world is not my top priority in life because it cannot be ordered, understood or controlled in the way my interests can. Meeting a person one to one in a quiet tea room is manageable, but still comes second to my interests.
Socialising is particularly hard when I feel the need to mask by making eye contact, or when the interaction is superficial and small talk based with no job role to provide structure and a welcome distraction from the interaction. Trying to remember how to make the right amount of eye contact or what to say, is incredibly distracting (the eyes and face can be interesting to look at on their own, but I can’t juggle attending to them and listening at the same time). I might appear social in these situations, but the inner tension is constantly there, even if others can’t see it beneath the mask. With my support worker or a select few autistic people who I get on with, I don’t make much eye contact, and the eye contact I do make is on my terms, and this means the interaction is a bit easier to navigate.
In unstructured group situations, with many people competing for interaction, I feel quite uneasy. I can appear a lot more reserved and quiet than I might be one to one, and if I do make an effort and talk a lot, I feel a sense of isolation and competition from others. I often feel left out and that I can’t keep up, and there’s a sense of being overwhelmed. Even one to one interaction can go too fast at times, resulting in the constant danger of me switching off and losing track of what the person has said, much to my annoyance. Having to juggle several conversations is very difficult and largely pointless when I could be at home reading a book that does not move or compete with other stimuli.
So why do I bother to go to groups? Well, I’m not sure, but I need to feel that I belong, and without any human contact I wouldn’t have any identity to show to the world. Why buy all those beautiful clothes if no one gets to see them? That might look vain (maybe I am!), but I enjoy showing off my clothes, and hoping that my identity is validated through the gaze of others. I can think (who knows what they think in reality) that they see me as I see myself or imagine myself to look, and I’m constantly experimenting with my identity via clothes. Then there’s the curiosity factor, as already mentioned. The need to find out about people and the world. Finally I want to make an impact, and you can only really make a mark on the world in conjunction with other people.
But I struggle to reciprocate outside of professional relationships (where the reciprocity is, in any case, on my terms). I can be very interested in someone and then lose interest once I have finished categorising them, and then I can easily move on from them back to my interests. Conversely, if very interested in someone and heavily invested in the relationship, I cannot imagine not being able to see them, and the thought makes me feel very anxious as they provide me with an anchor, routine and a sense of meaning. Without wanting to sound impersonal, they are like a trusted piece of beautiful furniture that I care about and want to protect from harm.
In a sense, maybe that’s the crux of the matter; namely, that I treat people a bit like favoured books. People are, quite literally, like walking books. You can ask them questions, and gather information from them, and some people even look like works of art. The favoured few (if you enter that category, know that you are the elect!) are very special. They are like a guiding light in my scary universe, and are a rock to lean on, providing security and calm. Support workers sometimes enter this category, and I feel relatively at ease with them, which means I can experience a positive social interaction that I sometimes even enjoy! However, most people don’t make the elect, and are there as and when I need them, but are pretty disposable when I’ve exhausted their use value. That might sound harsh, but people are vendors of information, and that’s the main reason why I interact, other than to feel a part of the world. Once they are no longer interesting in terms of providing psychological, philosophical or human knowledge, I find it harder to enjoy their company. The few friends that remain in my life do so because I can endure their company (although they might not be in the elect category), and they provide a source of routine, familiarity, and source of belonging and validation. Although my interests come first, I do still need a small amount of human contact, just in order to talk, if nothing else ( I am very verbal, and sometimes just talk to a blank wall!).
People move, they never stay in one place, they can be hard to work out, and I lack the cementing glue that seems to bind people together. I don’t understand why most people place so much value on friends and connections when I prefer to read books and categorise the world. Even though I appear social, I am just going through the motions without feeling connected. I don’t know what it feels like to be connected, and it’s so hard to explain because what I’m lacking is intangible. I can do the one to one social act pretty well, at least on the surface, but inside I am full of tension because it feels unnatural and mechanical, even though I might be interested in the person to a varying degree. So what other people see and what is really happening are not the same, and no matter how social and even reciprocal I can appear, I just can’t connect to people reciprocally in the genuine, inner sense that most people seem to do. People make me feel uncertain and out of control, whereas my interests provide me with relative calm and order.
There is so much more I could write, but I will save that for later. Crucially, my life revolves around routine, order, completion, learning, intellectual stimulation, and need for a low arousal environment with minimal distractions. Socialising and going out in general is hard work, and can only be done under certain conditions: a motivating interest, routine, plans, and if there is a clear structure. Normally I prefer to stay at home with a book.