The Curious Incident of the Dog in the Nighttime

I read this book not long after it came out, when I was about 13, and it remains one of my favourite books even though it did create some misconceptions. Cat and I decided to see the play in London, so we booked tickets for the evening of my last day at work. The last show I'd seen was Matilda, which
was a complete disappointment, so I wasn't expecting too much especially at comparitively cheap ticket prices.

The show was incredible. The actor playing Christopher, the main character, got it spot on. His mannerisms, his way of seeing the world and how he expresses it, I felt it all alongside him. His simple drawing of a smiley face to show that he knew it meant 'happy' made me smile, and in one scene where he imagines himself in space with his pet rat Toby, I started flapping (thankfully theatres are dark!) with delight at how beautifully touching it was. Then there are the scenes with his mother, where she acts so realistically her frustration with her son, with herself, with life. I could see there so clearly my own frustrations with my brother Christopher (who's at the other end of the autism spectrum), in particular when we were younger and I didn't so much understand his autism, and why he couldn't be like other children. A scene where Christopher was overwhelmed at a London Underground station showed perfectly how I often felt inside when taking the tube to and from work each day, and Christopher's father's attempts to get his son to communicate with him made me want to cry with how much I wished (and, I'll confess, at times still wish) that my brother would talk to me.

At the end of the first act, Christopher decides that he is going to London. While he's explaining his thoughts and plans, he sets out a long train track in a pattern across the stage. At the end, a model train lights up and moves along the track - I can't really describe why, but just that small scene made me feel that wonder that I felt on Christmas morning as a child. I used to love trains growing up, and seeing this come to life was, to me, magical.

Each prime numbered seat had a note on it (the fictional Christopher loves prime numbers), offering a prize to anyone whose names add up to a prime number (where A=1, B=2 etc). It turns out that my full name does (233), so at the end Cat and I went to collect my prize, a badge with the smiley face drawn earlier on in the play, which went straight on my noticeboard when I got home.

During the play I smiled, I cried, but most of all I felt. Just as I'd felt the book was about me when I was 13, I felt that this play was about me and how I sometimes feel as an Asper, and also how I used to feel about my brother's autism. I wonder how my parents would see it, would they see anything of themselves in the parents? Would they see me or my brother in the fictional Christopher, or both? Cat and I saw the mother in completely different lights, that was interesting to compare afterwards. I understood her frustrations more having been raised alongside someone with more profound autism who has shown a lot of challenging behaviour (he's a lot more mellow now on the whole), and also as someone who has worked with kids who have special needs, and as someone who hopes to be a parent one day.

I don't think I'd ever been so touched by watching a portrayal of autism.

Autism-unfriendly Autism event

Four interviews later and still I'm unemployed... employment support for people with AS won't accept me because I'm not disabled enough, and mainstream support services aren't terribly helpful at addressing my Asper issues with interviews. This doesn't surprise me at all. I have five applications to complete by the end of the weekend, so I'm procrastinating by doing laundry and blogging.

Toward the end of September, a few days before my job ended, I was invited to the launch event of some software that I was in a pilot for. This software essentially breaks down webpage text into simpler words, or replaces metaphors or idioms with the meaning of the phrase. Perhaps not so useful for myself, since I generally have no problem understanding written text (unless I'm too stressed, in which case I'll do something else), but some others at the launch event said that they or their family members with autism had found it helpful. The pilot studies took place in 2013: as I remember it, I was given original texts and texts which had been processed by the software, and asked to complete comprehension questions on them in order to show if the software improved understanding. I might also have had to answer questions on how easy I found reading the texts, I can't quite recall.

Anyway, I headed to the event after work one day, thankfully the office building where the launch was to be held was a short walk from where I usually took the train. Once inside, there was some confusion as to where exactly I was going since security staff weren't sure where the event was, but eventually I was in the right place. I was greeted by the experimenter, then left to find a seat in the small room. There were a handful of others talking in small groups, and a photographer who took lots of photos with the flash on. This startled me when she took them without warning: I can get quite jumpy when I'm tired or stressed. I was socially tired out from my day at work, so I sat down at the back. After ten minutes or so, the experimenters, software developers and people who funded the project joined us, and there followed presentations on different aspects of the project. There was a break where people huddled by the snack table - I'm never sure how to approach snack tables, will people move in a line or do I barge through, when somebody cuts in front what do I do, and all of this in a tight space didn't help. There followed more presentations, then some networking at the end.

At this point I was too stressed by the crowd to talk much,which unfortunately led to one of the main researchers talking to me sl-ow-ly when she addressed a group I was standing with, which is something that really insults me since I have a high level of education and am perfectly capable, when not overly stressed, of having a good conversation. I left as soon as I deemed it to be socially acceptable.

What I suppose hurt and angered me most is that this is a project run by people who take a keen interest in autism and Asperger Syndrome, who consequently should know how it can affect us. To then put us in a small crowded space, to then expect us in this environment to be able to have normal conversations and be able to follow buffet procedures with no guidance, and for there to be sudden flash photography, is it any wonder that I felt overly stressed out at this. To be spoken to like a small child when I felt overwhelmed - I didn't expect that from professionals in the field of autism. Especially not at an event about autism, to which people on the spectrum were invited.

When I finally left, I felt that I'd run out of social energy. I slept on the train back, trying not to cry about how hurt and tired I felt. Perhaps I won't attend future events run by this group.

Open plan office

Four days after my last post, I started a new job. I begin with this partly to explain my lack of blog, and partly to introduce what this blog is about.

In my only previous paid employment, I worked in a small office with two other people, and the rest of the staff were in their own offices. In this job, on my first day I followed my new boss into my new office - an open plan office with about 40 other people, six (I think?) different departments, no cubicles, and desks in rows of three with people in front of, behind and to the side of me.

I don't immediately do well with new people, especially groups. I should perhaps also mention at this point that it took me 2 and a quarter hours to get to work each day, so I was already quite tired on arrival. To be perfectly honest, my first Asper-instinct (I've taken to referring to myself as an Asper, I far prefer the term to Aspie for some reason) was to say that this wouldn't work and to get on the next train home. Instead I kept going there four days a week for seven and a half months until the end of my contract.

A few people have asked me how I managed to cope with this, having Asperger Syndrome, so I thought I'd put down a few thoughts.

Firstly, I loved my job. I primarily did admin for a children's social services project, occasionally helping out other departments with researching procedures or collecting case studies from staff. I got on really well with my boss, and I really liked the people working around me. Social workers do an amazing job, it took working alongside them, shadowing and reading case notes for me to really appreciate that.

Open plan offices are a nightmare for someone like me. I'm not sure where to start, so I'll just list things:

- Going into a room where I know nobody's name or role is daunting
- I'm not good at initiating conversation - what's relevant to say? Are they so focused on work that this isn't a right time to talk? They've not said hi, do they want to be left alone?
- When I'm working, I'm not good at chatting at the same time. At school I far preferred 'silent work' since then I'd get a lot more done without distraction
- When I do talk, often it doesn't get responded to - I know that I'm quiet when I speak, but there's still that part of me that thinks that I'm being purposefully ignored
- At lunchtime I'm socially tired out from the morning, so sitting in the kitchen with more people who I don't know talking to each other is draining and felt isolating
- Continuing day after day to go into the same room where I don't know everyone's name is repeatedly difficult
- Lots of conversations going on around me make it very hard to focus, and to know what's being said to me
- Not responding when someone does talk to the group that I'm in and expects me to respond makes me feel guilty
- Standing by the printers in a separate room where there were three others working, I was always uncertain as to whether or not to say hi, and would just awkwardly stand there waiting for things to print

To be honest, it felt like I spent most of my energy just to stay focused on work in this busy environment full of noise and uncertainty, so that I didn't have much energy left for social chat. And for me, social chat does spend energy. If anyone's read the Spoon Theory of chronic illness (I strongly recommend reading it, it made me more aware of how difficult things are for my close friends with ongoing health conditions), it's like I begin each day with a set number of social 'spoons' where they quickly go down with each interaction. I had a 2 and a quarter hour commute home each evening, so I had to keep some energy in reserve to get back and do things in the evening. Thankfully my housemate, who's one of my best friends, has been very understanding that I've hardly done any housework or washing up during the week!

I tried to do some volunteering alongside this job on my day off, but that burned up my social spoons so that I ended up even more tired at work and didn't help as much as was needed in the voluntary role. After a few months, the organisation lead and I mutually agreed that I should leave at that time, which was hard to accept but I knew then it was for the best. With my three-day weekend, being more socially aware at work was a bit easier.

I think what made me feel more socially inadequate is that a lot of my coworkers have incredibly busy lives outside of work, looking after kids/other family members/their own health, yet they could still come in and be social. I just couldn't do that. Is it being Asper, is it me, am I just doomed to fail in this situation, I don't know.

I was really touched on my last day. My boss had organised a leaving lunch, she'd brought in food and three other people had brought in salad, cake and snacks. The department had signed a card and chipped in to get me a scarf and notebook, I wasn't expecting that at all. This time I was stuck for words for emotional reasons rather than awkwardness. I really didn't want to leave.

This week I've largely been catching up on sleep, helping out a bit at events, and arranging job interviews. Fingers crossed I move back into employment soon, I'm not good at doing nothing for more than a few days!

Let It Go (2013)

I recently decided to watch 'Frozen', the latest animated Disney film, having heard mixed reviews on whether or not it was better than Tangled (I first saw that a few months ago, I was surprised at how much I enjoyed it). Before that I'd heard a lot about the song 'Let It Go' which appears in the film, and had listened to it once or twice. It was after seeing the context of the song in the film, however, that the words made an impression on me.

The next two paragraphs have spoilers, so be warned.
If you've not seen Frozen, the story involves two princess sisters, one of whom (Elsa) can create snow and ice using her hands. In childhood this initially amuses her little sister Anna, but after she accidentally shoots ice at her sister, the trolls who heal Anna remove her memories of her sister's ability. The sisters' parents keep the girls inside until Elsa learns to control her powers, and give Elsa gloves to cover her hands so that no more accidents happen. Elsa is frightened that she will hurt her sister again, and shuts herself away: by the time the sisters are teenagers, they are distant and Elsa stays alone in her ice-covered room. At Elsa's coronation, she is unable to control her emotions after an argument with Anna, and accidentally releases snow and ice in front of the guests. Elsa panics at having nearly hurt Anna again and at everybody knowing her secret, and flees to the mountains, unknowingly casting an unending winter on her kingdom. In the mountains she builds a castle for herself out of ice, and at this point 'Let It Go' is sung.

Since then I've listened to the song a fair bit on repeat, and earlier while walking I thought about how 'Let It Go', sung by Elsa, relates to my experience of accepting my diagnosis of Asperger Syndrome. Nowadays I feel more at ease with myself, but before I was diagnosed I felt that I had to hide my traits, much like Elsa had to hide her abilities. My traits came out more under stress or when I had trouble controlling my emotions, like Elsa's powers, however once I was diagnosed I developed a reckless attitude about showing my traits. Like Elsa, this led to my words and actions accidentally hurting others emotionally, and I had to learn to control myself so that I could still be me while accepting my traits as part of that.

(end of spoilers)


Focusing directly on the song, I think it's easiest if I go through it line-by-line and analyse it that way:

"The snow glows white on the mountain tonight, not a footprint to be seen.

A kingdom of isolation, and it looks like I'm the Queen"

After I have an Aspie-attack (thankfully this hasn't happened for a while), I shut myself away or stop talking out of guilt and for fear of hurting anybody. It feels like it's just me on my own during these times.

"The wind is howling like this swirling storm inside
Couldn't keep it in; Heaven knows I've tried"

Far from being emotionless as the media has tended to depict Aspies, I feel really mixed up after an Aspie-attack. When my traits have led to me saying/doing something (or indeed not doing/saying something) which has led to someone being upset, I feel awful, guilty, lost. This stress makes my surroundings seem more intense. And I do try my very best to keep my traits in check: especially before diagnosis, when I'd try to keep inside even my milder traits.

"Don't let them in, don't let them see, be the good girl you always have to be.
Conceal, don't feel, don't let them know, well now they know."

Don't let them know that you're not normal. Hide your Aspie feelings. Be the front you put on, be normal. These are things that I regularly told myself growing up. In childhood I was bullied for my traits, and did my best to hide them from others in order to gain and keep friends as I got older. This was stressful, feeling that I was wrong and that I had to become the 'normal' person that I tried to show. It was easier to dull my emotions than to feel guilt and pain: acting (and to an extent becoming) emotionless also had the 'advantage' that when I was silent, my words couldn't hurt anyone. And then I accepted that I might have Asperger Syndrome not long before I began this blog, and started telling people. I really wish that I hadn't cut off my emotions like that, it made feeling better about myself a lot harder.

"Let it go, let it go, can't hold it back anymore

Let it go, let it go, turn away and slam the door"

So I accepted my traits, and eventually a diagnosis. Then I didn't want to go back to feeling 'fake', so I rejected the front that I'd put on. After a while I felt so different, so removed from who I was, that I wondered if the 'real' me was my Aspie-self or the front that I'd learned to put on. In earlier entries I've discussed various feelings and thoughts on this: last week I was asked which person I was, I said that I just try to not worry about it nowadays.

"I don't care what they're going to say
Let the storm rage on, the cold never bothered me anyway"

Rationally I tell myself that anybody who rejects me or views me in a worse light for having Asperger Syndrome isn't worth my time, but that doesn't mean that I don't feel a bit scared when I tell people. When I put up a link to a documentary that I was in on Asperger Syndrome, I was too scared to open my Facebook page for the rest of the evening to see what others had commented on it. For some months after I was diagnosed, I was quite upfront about having Asperger Syndrome, and didn't care so much about others' reactions then. There was that stubborn part of me that says that even if people leave, I enjoy solitude: I'm not sure I truly believed that even then though.

"It's funny how some distance makes everything seem small
And the fears that once controlled me can't get to me at all"

Nowadays I feel at ease with my traits, when I have them under control. I'm not scared to show things like mild stimming or a short break in eye contact anymore, and feel a lot more relaxed in my daily life.

"It's time to see what I can do, to test the limits and break through
No right, no wrong, no rules for me, I'm free!"

Those Aspie-abilities that films often show? I can't hack computers or give incredibly accurate estimations, but I am able to focus well on things and have a good memory. Childhood bullying of being 'clever' left me reluctant to do things that I find a bit easier than my non-Aspie friends and relatives, but I'm trying to gain confidence in using these skills again. I'm trying to feel that being different in this sense isn't a bad thing. As for "I'm free!", I think I've already discussed this with regard to my immediate post-diagnosis attitude to having Asperger Syndrome, and the bad points of showing no concern for the consequences.

"Let it go, let it go, I am one with the wind and sky
Let it go, let it go, you'll never see me cry
Here I stand and here I'll stay, let the storm rage on.

My power flurries through the air into the ground

My soul is spiraling in frozen fractals all around"
And one thought crystallizes like an icy blast
I'm never going back, the past is in the past"

It's been a confusing journey to this point (sometimes it's still not clear-cut how I feel about myself), but accepting that I am allowed to have Aspie traits and still be myself is empowering.

"Let it go, let it go, and I'll rise like the break of dawn
Let it go, let it go, that perfect girl is gone
Here I stand in the light of day
Let the storm rage on, the cold never bothered me anyway."

So allowing myself to be Aspie isn't a bad thing. By accepting my traits, I'm also accepting the (admittedly few in my case) positive traits of my condition. I don't have to be 'socially normal' all of the time, and that's okay as long as I ensure that I don't unthinkingly hurt others.

Writing this blog reminded me of analysing poems in GCSE English. I like that nowadays I'm able to use my own interpretation, rather than what the syllabus told us to think. TVTropes talks about people with anxiety and depression relating their conditions to Elsa and this song, and I'm sure that others will see this song as something completely different. When I deliver mental health training, I talk about how we each see things through our own 'window on the world', which has been shaped by our own experiences and beliefs. Being Aspie affects how I see this song, and my other life experiences affect how I see things in my daily life. I find it interesting learning how others see things, and finding out what their windows are made up of.

In case you were wondering, I think that as a film Frozen wasn't as great as the hype made it out to be. I do love this song though, and would've loved to see more of Elsa's character.

Emotion

Sorry little blog, I have neglected you horribly. In a way last year passed by so quickly, I'll try to update more regularly.

Just over a year ago, I saw an advert for a study with adults who have Asperger to do with emotion. I've been emailing the researcher back and forth since then, talking about how I as a person with Asperger experience emotion. Or to put it in his words:

"It's about the emotional experiences of autistic people; or more specifically, it's about trying to figure out what it means to say that people with autism experience difficulties with discerning, managing, and expressing their emotions. So of course the first step would be to ask 'what do we even mean when we say 'emotions'?', and then to see in what way the other known characteristics of autism affect one's understanding of his/her own emotional processes."

One of my third year university modules focused on theories of emotion, I can't find my notes on that but I did get the coursebook (Emotion Science by Elaine Fox) out of the library to review some of what I'd learned. I'll quickly go over the things that I feel are relevant for this blog post in the next paragraph.

As I recall, there are four main frameworks to emotion. The first suggests that emotions are biological, that they evolved as good solutions to problems. E.g. I see bear, I'm more likely to survive if I feel fear which would motivate me to flee. The second approach suggests that emotions are socially constructed, that they are products of our culture which assist us in negotiating social roles. E.g. I see bear, I've know that others react in fear and thus conform so that I also feel fear, then flee. The third framework suggests that emotions are the result of perceptual changes in our body, e.g. I see bear, my heart beats rapidly, I realise this is fear and flee. The last main framework that I studied suggests that emotions are the result of cognitive appraisals, that we evaluate what's happening and determine our emotion based on this. E.g. I see bear, I think that it's likely that bear will attack me, I feel fear and flee. I liked theories on how we distinguish emotions: while some studies have suggested that emotions are discrete, i.e. independent of each other, most recent studies suggest that emotions do relate to each other. Russell (1980) suggested that emotions can be measured according to how pleasant they make us feel and how strong the emotion is, for example a strong highly pleasant emotion would be 'elated' while a mild highly pleasant emotion would be 'happy'. Plutchik (1980) proposed that there are eight basic emotions, which can be paired up so that they contrast each other (joy vs sadness, trust vs disgust, fear vs anger, surprise vs anticipation), and that the rest of our emotions appear somewhere between the opposites or between specific dimensions (e.g. joy + anticipation = optimism, but you couldn't experience joy + disgust). This picture gives a better sense of what I'm trying to explain.

So how does this relate to my experiences of having Asperger Syndrome? I remember being told when I was a child that I’d get ‘upset’ and ‘angry’ mixed up, based on my behaviour. I remember often having to be told what an appropriate emotional response was to an event, so while I experience emotions readily now, is that biological or socially constructed? I can definitely feel afraid, and often feel anxious when I'm with new people, which differs from the fear I feel if I see a spider, for example.

Sometimes I’m not sure what I’m feeling – I don't seem to feel anything in particular when nothing's happening, not particularly content or discontent. If I think about it I could remember a recent or ongoing event and conclude a feeling based on that, but by thinking about it am I inducing that emotion rather than recognising it? Sometimes when I try to remember an event, I try to remember what I felt at the time, however I wonder if this is just me imagining what I must have felt, rather than remembering the emotion itself. E.g. I was recently rejected for a job and remember the disappointment, but I can't remember the feeling of happiness on my birthday the year before last (last year's birthday was just over a month ago so I still remember it!) - I imagine it must have been happiness, it's a bit like saying I remember having ice cream in Italy but can't remember what flavours, I can guess based on my preferences though.

I couldn't tell you what an emotion feels like. I'm not great at describing things, it's one of the criteria that was used to diagnose me! I know what the emotion is though - like if I'm asked what an apple is, I might say it's a crunchy red fruit, if you asked how a very small apple's different from a cherry then I'd probably get stuck for words. It's harder to describe emotions, since if we ignore the third framework explained above (our body reacts in a certain way which leads us to identify the emotion), they don't have properties beyond how they're subjectively experienced. I know I'm sad because I 'feel' sad - I could say that crying means I'm sad, then again I've cried of happiness.

Expressing emotion doesn't always come naturally to me - going back to Russell's theory, I can have a very mild but highly pleasant emotion (general contentment) and have a facial expression of boredom. This particularly shows in photos where I'm not paying attention to the camera, even though I recognise the scene as a time when I was happy. If I stop to think about it, must I display every emotion? Maybe my body doesn't see much point in it, since I can convey my emotions easily enough through words if I feel like sharing how I feel. Then again I have to remember that others won't necessarily know how I feel unless I make it clear. Sometimes I think that my expressions go overboard, either stereotypical or childish. At times I seem to feel stronger emotions that others in response to an event, e.g. something good that's happened might make me laugh while the people around me just smile, and sometimes the reverse happens.

When asked what tools I can use instead of words to discern my emotions, I got confused. Do we have to use words to understand what I'm feeling at any given time, if I'm not trying to convey that emotion to anyone else? I can tell that I'm content, for example, and I can feel the difference between contentment and joy without having to explain using Russell's pleasure/strength dimensions that I mentioned earlier (I only learned this theory two years ago, I could recognise the difference between my emotions before that!). If someone asked me how I was feeling, I could say content, but would struggle to explain how this is different to feeling happy.

I'm not entirely sure how much of this relates to having Asperger Syndrome, and how much is just general lack of understanding of the theory behind emotion. Are we perceived as having a different emotional experience because we express ourselves differently, sometimes stereotypically and sometimes with little if any reaction? Or do people with Asperger Syndrome genuinely perceive emotion differently to others? What will the study that I'm taking part in reveal, I wonder!