A big move

I finally got a job, without the need for an interview, for something I'd applied for about a year ago. I'm now a classroom English language assistant in Madrid.

The email came out of the blue - it arrived when I was at a weekend in CenterParcs with a group I'd not met before, I was too stunned to acknowledge it then. The program is organised by the Department of Education in Spain, and they wanted an answer immediately. A week later, having attended and heard back about another unsuccessful interview, I decided to accept it.

I flew over on the night of 1st January, and stayed in a hostel for the first week. My mum came with me for the first eight days to help me look for accommodation, and to provide moral support. I've been here for 11 days, and have only had three blips so far, which I think is pretty good considering I've left everything and everyone behind, on top of not being fluent in the language and having social issues.

So far things are good - the job's great, the kids I'm teaching are sweet, the other staff are friendly, and my live-in landlady's lovely. I'm now living in a suburb of Madrid, about half an hour from the centre by train, and I've tried two meet-up groups so far. I didn't think much of the first one (too many people in too little space), the second one was a writers' group where we wrote in complete silence for hours, so not quite the environment I was looking for. Still, I feel okay being here, which surprises me to be honest. Hopefully things will continue this well!

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!

Trade-off

A few months ago I got an email from somebody who'd read my blog, discussing some of the issues that I'd brought up in my 'To The Moon' post. We've exchanged emails since then, and have since become pen-pals and friends. We mainly talk about things relating to Asperger Syndrome, how it's affected us and the people we know, and about others' reactions and our own thoughts about ourselves. One of the things we've discussed is how our behaviours have changed as we've grown up, and how we've had to learn to act more typically. I've written before about how I wonder what I'd be like if I'd not been encouraged to develop more typical behaviours and to hide my Aspie traits, and my conflicts over whether Aspie-behaviour-Catherine or learned-behaviour-Catherine is the real me. I decided a while ago that I wouldn't worry about this anymore.

Anyway, when my penpal brought up the Autism  Spectrum Quotient, I wondered if we'd have scored more highly when we were younger and hadn't yet learned to mask our Asperger traits:

"It’s interesting to see when doing the AS quotient test how much I’ve changed, and I wonder if things would’ve been different if I’d been diagnosed in childhood or early adolescence rather than as a 20 year old. Maybe if I’d had a diagnosis to fall back on, I wouldn’t have tried as hard to be ‘normal’, then again would I have had more support and consequently had fewer emotional problems? I wonder if there’s a trade-off with autism and mental health – feel okay and be atypical, or learn to be typical and feel low about it at times."

In 'To The Moon' (spoilers ahead), one character talks about how she struggles with herself, having had to mask her Asperger traits from an early age. When I was diagnosed with depression aged 19, I thought that while things had certainly gotten worse during that period, I'd suffered from persistent low mood for years before that. Much of my depression (when it flares up) involves my inner voice telling me harsh things about myself, including my social failings and how I've failed at being normal. I've had episodes where an overwhelming social situation has left me feeling down about my inability to cope, and I've sometimes tipped over into depression if the negative thoughts get strong enough.

My question is, what if I'd been raised to believe that it's okay to have and to show my traits? I'd have been more Aspie, most likely, but would I have avoided low self-worth and feeling mentally unable to cope? After diagnosis I did act more Aspie, and ended up using it as an excuse when I knew that I could've tried harder to act normally - while I did feel less upset when I failed socially, I then had the added burden of guilt when I knew that I hadn't tried my best, which ended up with me beating myself up about it. Would I have been happier then, if I'd earlier accepted it as okay to be my Aspie self? Or would I have retained my childhood wish of wanting to fit in with other people?

I'm now thinking of when I worked with a 4 year old with autism. I was trained to work with him in Applied Behavioural Analysis, in short rewarding him for typical behaviours and ignoring the more autistic ones. It broke my heart to see him so happy in his own little world, knowing that he'd be wrenched out of it and given therapy to become more 'normal'. Why shouldn't he be allowed to hold playdough instead of making it into shapes? Why must he have his trains go in and out of the station, rather than line them up? In the end I was asked to leave since my heart just wasn't in the therapy. A year has passed since then, he's probably progressed a lot and acts more typically. His older sister probably enjoys having a brother who plays with her rather than one who ignores her or pushes her out of the way. I wonder if he's still happy, and if he'll grow to be happy with who he is, or if he'll feel that he's trying to be someone he's naturally not at ease with.

The character in To The Moon who was diagnosed in childhood is uncomfortable with herself, having had to learn to act typically, however she appears fairly normal to the player. The character diagnosed in young adulthood shows more traits, but it's unclear whether or not she's happy with being herself. One of the other characters mentions that maybe she wants to fit in just like everyone else, and from some of the dialogue toward the end of the game it is strongly suggested that she felt lonely and different as a child.

Maybe I'm creating an issue where there isn't one - just because I feel that my mental illness is linked to not feeling okay with my Aspie self, maybe I'm assuming that people who have grown up taught to repress their autism feel unhappy or anxious because of it. If there is a trade-off though, what's the best thing to do to have mentally healthy people who function well socially in society?

Being too quiet and not Aspie enough

I feel bad for neglecting this blog, but finding a new topic to blog about which I haven't already covered/covering things that I've already discussed from a different angle can be hard. I sometimes go on about the same thing, so I'm told, so I'll try to not repeat myself.

I finished my two-month internship in the psychology department of a hospital - overall it was a great experience, had its ups and downs but I got through it and grew a lot. I learned a lot about the job, about being in a workplace, and I did my tasks well. While I got on well with my officemates, I had some trouble grasping workplace social rules - my officemates talk between themselves but do I join in? What can I contribute to a not-related-to-work discussion? At meetings, am I meant to contribute given that I've not yet met the patients being discussed? Can I say that I disagree with the professionals' opinions? What do you say to someone you'd not met before when you're both waiting for the kettle to boil? Being in a workplace was a situation that I'd not been in before - I've done a lot of voluntary work, but that either involved directly working with people so there wasn't much opportunity for social interaction between myself and staff, or I was on a team with other volunteers on the same hierarchical level so it generally didn't feel so intimidating and roles were more clear-cut in my mind. So that was a huge learning curve for me. I have an idea of how Catherine the volunteer is expected to act, and by now am fairly used to how Catherine the student acts, but Catherine the employee is a new one that I'm still learning about.

Since the internship took place in a city about 140 miles from my university town, I had to move away from my friends and family to live there alone. I learned that I can function in a new city, which is reassuring. That said, starting completely afresh was really difficult, and I'm not great at forming new relationships, which ended up with me not feeling that I fit in with any social groups that I tried out and feeling disheartened coming back from another evening where I didn't feel that I'd met any like-minded people. I tried to access local adult services for adults with Asperger, but was told that I'd need a referral from my GP. Given my experiences with disbelieving healthcare professionals (as I've previously written, one said I can't be Aspie because I have friends, another suggested that I wanted a diagnosis to fit in with family members on the spectrum), I never asked for a referral since I didn't think that I'd be seen as Aspie enough.

It's a bit of a catch-22 (I hope that I'm using this expression correctly): I'm not high-functioning enough to fit into the world without struggles and misunderstandings on my part, yet am often too high-functioning for people who don't know me well to believe that I'm Aspie. I think the main reason why people often don't believe that I'm Aspie is that they mainly see my 'unautistic-seeming' traits that I mentioned in my first post, e.g. eye contact, active imagination, seeing people as people and appreciating their thoughts and feelings. I still think that a lot of these behaviours are learned, as I remember explicit lessons from my parents and books on eye contact, relating to others, and being encouraged to be creative and to go travelling outside of my comfort zone. When I have 'Aspie-attacks', where my Aspie traits come out due to feeling overwhelmed (often from stress or high-intensity stimuli) e.g. rocking, feeling like there’s a glass pane between me and other people, lining things up so they have a pattern and being apprehensive about meeting new people, they're less obvious to others since a) I try to be by myself if this happens since I don't want others to think me too strange, and b) my thoughts and feelings can't be seen e.g. feeling separated by a pane of glass, so it's not too likely that others would know that what's going on inside is perhaps not so typical (unless a behaviour such as standing away from others or being more quiet than usual accompanies it).

It's easier for me to put this in writing than to say it out loud - one reason is that when I write, readers are given the choice to carry on reading or to stop. They don't have to continue reading, but if I speak then they have to continue listening even if they feel that I'm speaking either nonsense or being self-centered. Either that or they cut me off, which has happened a lot. It's been pressed into me that I mustn't ever talk over people, so I really dislike it when people speak over me. I also find it hard to find an opening in a conversation since I don't always know when a person's finished speaking, and don't want to talk over them if they still have more to say. Then another person starts speaking, and often if there's a short break then by the time I've formulated the start of a sentence, someone else has started talking or the conversation topic has moved on. Sometimes my spoken words come out clumsily and have unintentionally caused offence at times, while when writing I can think about what I'll put and thus run less risk of accidentally hurting someone. Sometimes I say things that have little context or that make no sense out loud, or I say things concisely since I assume that others will have followed my thought process, and then I trip over words when trying to explain what I meant. I don't like to hear my own voice, and hearing myself stumble over words or seeing others look confused by what I've said feels humiliating. There, that's why I don't often say much (not sure who that's directed to, at the moment I'm just remembering the countless teachers who've told me that I need to talk more).

Hm, writing this blog brings out things that I hadn't planned to discuss. I think that that's a good thing, though. When writing stories, I often don't know where they'll go, it feels a lot more natural to follow the words and see where they'll take me. I can do this when talking out loud to certain individuals who I feel won't judge me for going on a word-flow, but am scared of how most people will react. I've been told to shut up or to get to the point or to make some sense for once too many times to put myself out there easily, as it were. I don't want this to be an excuse for not speaking much, I do try to hold conversations and often succeed if it's with someone who I know or whose role I know, but I want to explain why it's not as easy as "Catherine, talk more!" I keep trying, and have improved a lot since I started uni, which is why it stresses me when I do sometimes have issues speaking or go mute - I can talk well and have proven it, but it drains me.

It sometimes feels a bit lonely, not feeling Aspie enough to access services or to have truly 'earned' my diagnosis, but at the same time not being 'normal' enough to easily fit into a world where social interaction is such a vital part. I feel truly thankful to have found friends who accept me for who I am. I wasn't able to establish a support network in my new city and felt too alone, so when the internship ended and I had nothing left there I moved back to my uni town. When a new job comes up, I know now that I can cope with moving somewhere else as long as there's something stable that keeps me busy, and as long as I can come back to recover when things get too much. Having friends and family in close reach makes such a difference, I feel that I'm home again.

To The Moon

In September, my friend Bev sent me a link to a game called 'To The Moon'. She said that she'd watched the trailer and it looked quite like Final Fantasy 6, which is one of my favourite games, so she thought that I'd like this. Watching the trailer, I learned that the game is about a dying man's wish to go to the moon: two scientists offer to give him memories of having accomplished this by going through his life and changing certain memories in realistic ways so that his memory-self would be motivated to pursue this dream. It looked charming, and the music was beautiful, so I thought I'd give it a go. To be honest, I then looked at the price of the game - £6.99 - and thought "Maybe another time."

On Boxing Day, I remembered the game and went to see if it was any cheaper. It was on offer at Steam for £3.49, so I decided to spend some of the Christmas money that my grandmother gave me on it. I'm not wholly sure what my grandmother would make of this, since she's very set in her ways and doesn't like technology, sometimes my mum wonders if she has Asperger's too. Anyway, I bought the game, settled down on the sofa with my headphones to block out the sounds of my brother's Youtube videos in the next room (he has autism and severe learning disabilities, since we got him an iPad he's been happily watching videos on it at full volume, much to my ears' dismay), and began to play.

When I wrote my blog post on Katawa Shoujo, I think that I managed to get my point across without revealing too many plot details of the game. I severely doubt that I can do this with To the Moon, so if you've not played the game and would like to discover it for yourself, proceed with caution since there'll be spoilers from here on.

The game is played with the two scientists as main characters. The gameplay itself is quite simple: guide the characters around to find objects that contain a memory. When all five objects in each level are collected, the player must solve a puzzle (flipping tiles to get the desired picture) to get to the next level. The bulk of the story takes place inside the memories of the dying man, Johnny, starting with shortly before the present day. Going back in time, most of the scenes involve Johnny with his wife River, who died from a terminal illness shortly before the last memories. In a memory from late teenage years/young adulthood, River is diagnosed with a pervasive developmental disorder (PDD), and given a book about the symptoms written by Tony Attwood.

While not specified what type of PDD River has, it has largely been accepted by the internet community (myself included) that she fits into Asperger Syndrome. For one thing, Tony Attwood is a real-life author in the field. Secondly, one of the scientist, on hearing River's condition described to Johnny, comments that he wasn't aware of girls being affected - a common misconception for Asperger's. Thirdly, her symptoms fit the diagnosis of Asperger's - I'm not wholly sure how to describe her, so I'll go through some of the game's scenes with her in them. In the first memories we see her as a middle-aged or so woman, appearing quite normal but in the habit of making lots of paper rabbits (it's later revealed that a childhood memory involved a rabbit, and she was trying to remind Johnny of this). She has a strong attachment to the lighthouse by her house, naming it Anya and making Johnny promise that he'll always care for it: we later learn that as a child she believed that stars were lighthouses, lonely in the sky, and that she'd like to befriend one. As a teenager, she and Johnny arrange to go to the cinema: she doesn't understand why her sitting apart from Johnny in the same screening didn't count to him as 'going together'. As children, River sits apart from others at a fairground to watch stars: when Johnny finds her, she begins to leave, but after some prompting she stays and has a factual conversation about the stars. Throughout the game, River has with her a stuffed toy platypus, which accompanies her in most scenes up until her death.

Here's the thing. I've seen a lot of portrayals of people stated to have Asperger Syndrome (or in this case an unspecified PDD) before, and they seem almost too exaggerated a lot of the time. River seems, to me, like many Aspies I know, including myself. Take the scene at the cinema, for example: next week I'm going to see a film with a group of friends, and it makes most sense for me for everyone to buy their own ticket so we can all watch the film, even though we'll all be seated randomly across the cinema. In my mind, the outcome is the same. One of the group said that she was happy to organise a group booking so we'd all be together, so it clearly makes a difference to some people even though to my mind it largely doesn't. At the beginning of the game when we meet her in middle age, River seems normal aside from making paper rabbits: when we see her as a child, she's more of a textbook Aspie. Most Aspie adults I know don't appear to have anything other than a quirk at first, I know that I've learned to act more 'normal' over time and that my displayed traits have largely reduced on the whole. River seems apart from the group as a child and teenager, but can have conversations, and clearly develops a strong relationship and love for Johnny. Like I've said before, many Aspies can and do have friendships and romantic relationships.

Another character in the game, Isabelle, says that she has the same condition as River, however claims to be less strongly affected. At one point she says to Johnny "I really dislike when you neurotypicals think you know what's best for others," - at this point I felt sure that River is an Aspie. I identify with this, having others assume they know what's best for me makes little sense since they're not me. Isabelle reminds me most of myself, since she appears normal but talks about how she really feels:



Isabelle: Just because she and I share the syndrome, doesn’t mean we have the same head.

Johnny: But you must be able to help somehow... Everything was okay at first, but now, she's even more aloof than before. Even when we're in the same room, she's never really…there. It’s starting to take a toll on me. I just don’t know how to take it anymore.

Isabelle: Well, I can’t speak for her, but many of us do long for connections... though, being able to articulate it is a different story. Just because she struggles to express it, it doesn’t mean she doesn’t feel anything. She's still there, right? Sometimes you just have to have faith that she cares.

Johnny: That's pretty difficult to do, day in and day out.

Isabelle: I know.

Nicolas (mutual friend): Wait, but why do you seem so normal, Izzy? I mean, don’t you have the same condition?

Isabelle: For one, I was diagnosed when I was still young.  With effort, it's not impossible to acquire a guise of social norms systematically. But you know what? I both envy and pity River. Me.. I’m an actress, because I’ve been doing it all my life. Not only onstage, but offstage…and at practically every moment. I’ve gotten good at it, because acting is the only option I have. It's the only way for me to be ‘normal’. But River…she never did that. She remained an outcast and refused to learn how to step against it... I don’t know if it was by choice or limit, whether bravery or cowardice... There are days where I just can’t stand faking it anymore. And then, I realise that it’s too late. The Isabelle that people know of is all an act, and the real me has long become a stranger. I think in the end…I just envy her.


I had to put the laptop down before I could continue the game after this scene. I don't think that any portrayal that I've come across puts it so beautifully. I used to wish that I'd been diagnosed early on so that my behaviours and thoughts could be explained as Aspie traits rather than as things to be corrected in order to be normal, but reading this I wonder if the same self-esteem issues I had (and to an extent still have) are present for people with earlier diagnoses. Who is the real me? Is the real me like River, who reads complex books for fun and has a stuffed toy companion and can't stand clocks ticking? Or is the real me the front that I continuously learn to put on? This used to go round my head a lot, now I try to not worry since I have to accept myself one way or the other. Earlier when walking home I found myself stimming my fingers while feeling quite stressed: once I was aware I consciously stopped, then decided that I didn't particularly care if anybody saw me and continued. I hardly ever feel able to do that in public, and sometimes it's hard to let my guard down as it were even when I'm by myself. It's a bit like when I type - if I make a slight error, the word autocorrects itself often without me being aware of it. Even when alone, that subconscious autocorrect on my behaviour's still there.

I gained the majority of my friends when (not consciously) appearing normal - as an Aspie child I had only two 'real' (i.e. not forced to play with me by their parents/taking advantage of me) friends until I was about 11, then maybe five or so 'real' friends as a perhaps less-Aspie teen - and I sometimes worry that I'll lose them by indulging in Aspie-ness. That said, my feelings and thoughts are the same, when I do act Aspie I just have to hope that my friends have faith in me that I'm still the same person. Like Isabelle says, "Sometimes you just have to have faith that she cares." I have issues with trust, and assume that others would too, so I try to not push my Aspie-ness on people.

The main thing that the game gave me is hope. River makes it into a top-ranked position, marries, and has friends. Even though Isabelle feels that she's not herself anymore, she has friends and (to my understanding) is married (she mentions someone called Ted). I have friends who accept me as I am (whoever I am), I'm making steps toward a career (doing a part-time master's and about to begin an internship in a mental health hospital), and can see myself being married one day. The two women are accepted, seemingly have good lives, and not a huge fuss is made about their conditions. So far my uni and post-uni life is like that, here's hoping that it continues to be so.

What's appropriate to say

I feel like writing more on my mental health. I'm not sure what's appropriate to write, though. The only thing that I've been diagnosed with is mild-moderate depression, but I've had other mental health problems and sometimes still struggle. The response I've had to the few times I've spoken of my mental health problems has mostly not been good though - some people have told me to not talk about it, or said that I'm making things all about myself, and some people have said 'oh' and changed the subject. That said, the few people who've had a positive response - saying 'okay' and asking more questions, or even admitting that they don't know what to say, has been really encouraging. I like to talk about myself, but have been told often that there are certain things that I shouldn't say, which makes me reluctant and unsure what's appropriate to say. Being given the space to talk without any prompting can be daunting though, I far prefer it if people ask me questions and will listen to the answer that I give.

That's one of the reasons that I prefer writing to speaking - I have the space to write, and am not forcing somebody to listen/read. If a person reading my thoughts doesn't want to read any more, they can stop without offending me. And I can write all that I like, without waiting for the other person's approval to continue. Most media portrayals of people with Asperger Syndrome show that person to talk for a long time with no holds barred (it took me a while to understand what that phrase meant) - I feel that when I write, I am like this. When I speak, I seem to be the opposite, giving the other person so many opportunities to speak that in the end I say little or nothing. I'm getting better at speaking, but still fear others' reactions, especially if I don't know the speaker well.

Part of me worries that it seems as though I'm asking for sympathy by talking about my history of mental illness. I'm not, and I don't want sympathy. I'd like understanding, and I'd like people to want to know more. And to ask me questions. And to not treat me differently because they know that I've had mental health problems. I've been really fortunate that for the most part, the people I've trusted enough to tell recently have treated me the same as before I told them about my past and present issues.

This is very similar to my concerns about coming out as Aspie. And that hasn't backfired.

1500 pageviews, apparently

So my blog stats say that I've had over 1500 pageviews - I'd like to think that most of these are from people reading my posts rather than random hits! It would be nice to know if anyone's reading this. Could you comment if you do read this?

Mood is like music to me

Having said I'll try and write more mental health stuff in this blog since I'm running out of Aspie-related things to say, I'm not wholly sure what to write. Do I write just about mental health, changing the direction of the blog? Or do I try and fit in my experiences and views on mental health with having Asperger Syndrome?

Let's try the latter. I was diagnosed with mild-moderate depression after a particularly rough patch in summer 2010, just before my second year of university. I'm fairly sure that I've had depression for longer than that, but then again how much of my teenage lows were due to depression, and how much due to hormones, and how much due to being frustrated with my difficulties with social interaction? A lot of my diaries (I kept diaries regularly between the ages of 13 and 18, I still have them in my bookcase) are full of what looks like the three - teenage angst and mood swings (of course), feeling overly upset after a negative social interaction such as being tongue-tied or feeling ignored, and sometimes just unsure as to why dark feelings that I couldn't seem to escape from would come out of nowhere.

It's not always easy to describe having depression - the first time that I had counselling shortly after my diagnosis, I got frustrated that the person I spoke to seemed to have hard-and-set ideas as to what depression was. Since I didn't fit into his descriptions, I doubted whether or not what I had was depression, which made me feel worse. Interestingly, a friend of mine who saw him before I did said that she found him really helpful, someone who saw him after I did found him just as unhelpful as I did. I'll try and describe what it can be like, forgive me if this doesn't make too much sense.

I've been taking piano lessons since I was eight and violin lessons since I was nine, so I'm going to explain this in musical terms since this makes most sense to me. Imagine that a tune's playing. The tune is made up of pitch (i.e. high or low) and volume. On a day where I'm feeling content, the pitch is moderately high, and the volume's relatively soft. If I'm feeling really happy, the pitch is probably the same but the volume's louder. When I feel depressed, it can vary. Sometimes the pitch starts very low, and the volume is loud - great feelings of sadness. Sometimes the pitch starts normal and suddenly goes low and loud - sudden onset - other times it gradually gets lower and quieter, until I realise that I'm no longer feeling alright. Sometimes the pitch is low and the volume is very quiet - constant sadness from which there feels no escape. Sometimes there seems to be no volume at all and I just feel numb. My most recent episode (my depression's not constant, on many days I feel perfectly happy and content) was one of sudden onset - low and loud - but since it varies, it can sometimes be hard to tell that I'm in a depressed state. And that's hard, since for me, I need to realise I'm ill before I can get better.

I'm getting better at it, though. I had 9 sessions of cognitive behavioural therapy last year, and am learning to recognise my moods and negative thoughts. Once I'm aware of this, if I'm in an okay frame of mind I can try things that might make me feel better, such as reading or sleeping (if appropriate!) or talking to someone. If I don't feel able to do this, I wait it out and try to avoid doing things that I'm aware can make me feel worse, such as putting myself down, watching depressing films, or eating certain foods (dairy and artificial sweeteners can sometimes trigger an episode).

Thankfully I've not had an episode in over a month :) Part of me worries about when the next one will come, but I'm trying to avoid triggers and trying to stop myself from feeling worse when I do feel sad, so I think that there's only so much I can do. Change and stress can also set me off - I think that that's the Aspie in me - so while I'd ideally keep things the same, I know that this isn't possible. So I'm making sure that before change happens (if I have sufficient warning), I have a strong support network and coping strategies. It's like a pre-emptive measure, so that hopefully I'll feel safe if I do have a strong episode. I keep getting better at managing my episodes, so I'm hopeful that I can live with my condition. Same goes for being Aspie - I like to think that I'm managing it better and have fewer problems adjusting to the world. Or maybe the world's becoming more tolerant. Whichever way, when I'm not in a depressed state, I'm confident that I can cope.

Communication clashes and mental health

I think I know what I want to write about in this post, but have no idea how to start. This is a common feature in many conversations I have - with most people I talk to, they have to start the conversation, then I can reply or try to take it down a different route. This works well with my more talkative friends, but not so well with people who are reserved or don't start talking without prompting. This one-sidedness doesn't often give me too many problems nowadays though, but that's not what I wanted to write about.

A few weeks ago I was talking to a family member who I'd not seen for a few weeks about what had been happening in general since I'd last seen her. At one point while we were on a bus I mentioned an issue I'd had with something (I can't quite remember what it was now), and before I could explain how it was resolved she said "Oh, so you did this..." and talked about what she'd thought I'd done. I tried to explain that no it wasn't what I did, I'd done something different. "So you did it like that, then you did this..." she carried on. Then she said that I felt a certain way about it. As I mentioned in a previous blog post, I really can't stand people assuming how I feel (maybe irrationally so). These assumptions of my actions and feelings resulted in me failing at holding in tears, and this person being hurt and upset that she'd made me cry. When we'd both calmed down a bit, she said that I clearly was having issues coping and with my mental health, and should look into getting more help.

So. My first reaction was to point out that most of the time I manage my emotions well and can cope, however I react like this when people put words in my mouth as it were. And that she's one of the few people who does this. We've had many discussions about how we're both the way we are, how we've both tried our hardest to change and adapt, how we must keep trying for each other's sakes. And I really do try to be 'normal' as it were - it's not as though I'd choose to cry on a bus. So this isn't the first time that we've talked and had tears and misunderstandings as a result, and I hugely doubt that it'll be the last, despite our best efforts. I recognise that she tries her hardest too - it can't be easy dealing with me when I'm in a state and show my traits, or for her to communicate on my level. I think that we both have different communication styles - mine to due Aspie-ness, hers due to culture - and we both do try to adapt to a common ground that others in the UK use. It's not an alien culture to either of us, but thinking about it it's not our 'mother' one, either. It makes things difficult, and I feel bad when we have clashes.

That wasn't the point I'd intended to make, but I'll leave it in.

Anyway, her comment made me think more about my mental health. I think I've said before that I have depression: recently this has been largely manageable, where I've gone for weeks without having a bad patch, and can recognise when I do have a particularly low mood and make sure that I try to prevent myself from getting worse. It's something I'm getting better at, particularly since I had CBT two years ago. I've had two rounds of online counselling and two of face-to-face counselling, on the whole these helped and when I felt that things went badly I went to see friends who'd help me feel better. When I struggle nowadays I often find a group of friends and feel better by being with them, or sometimes phone the Samaritans (just to clarify a misconception, I phone them for non-suicidal stuff). Other times I stay away from people but make sure that I'm somewhere safe like my room and do something like watch TV or take a bath. I choose things that won't frustrate me and that take time, since often my low moods require me to wait them out before I feel better.

Sometimes I think that my depression can be triggered by Aspie-related frustrations such as feeling misunderstood or having an unsuccessful conversation. On occasion I wonder if I'd have depression if I'd received more support for Asperger's when I was younger, since my social difficulties made me feel like a failure and affected my self-esteem a lot. The two aren't the same, as one person suggested to me once, but as I wrote before I do think that they're linked in my case at least.

What do I do then? I can't avoid events which trigger my depression or my Aspie traits or both. I am better at managing both conditions and like to think that I'm continuing to improve, but sometimes the difficulties do make it harder to cope. In winter my depression flares up more (not sure why - less daylight? Cold?) so at the moment I'm considering taking anti-depressant meds to help make the next few months a bit easier. It's not something I've done before and have been reluctant to try (main reason being withdrawal effects), on the other hand if it makes winter easier then maybe they're worth trying. I'm going away on a residential course (Mental Health and Human Rights diploma in India, am quite excited!) in just under a fortnight and will be back in mid-November, so I'll see if I still feel the same way then - I see no point in starting them now since I don't want my body to be in adjustment-period while on my course!

I sometimes consider writing a mental health blog on my depression and diploma course and training I've been involved in, then again I feel that I neglect this blog as it is. Maybe I'll integrate mental health stuff into this blog, since I don't know that I have much more to say on being an Aspie that I haven't already said. We'll see how things go.

Zoomed-in shutdown

A few days ago I had another 'Aspie-attack' (what I sometimes refer to my shutdowns as) when in a shop. When I was growing up I'd often get these when shopping with somebody else and they wanted to buy something that I didn't - I'm not sure why this triggers me. Nowadays I often shop alone so the issue rarely comes up, and when Mum goes shopping I usually wait in the car with a book or the radio. Anyway, this time I was with a few friends (Mark-Clare-Steve) in Brussels: we'd just backpacked across Germany for two weeks (it was such great fun!), and this was our last day before heading home. On our way to the station with a few hours' spare, we stopped off at Lidl for cheapish European goods: at some point in the shop I felt overwhelmed by the others buying things that I wouldn't want (rationally I know they're not charging me for them), and started shutting down.

I've already written a post on shutdowns: this was similar but had the extra element of anxiety. The intense stimuli (whatever my eyes landed upon, e.g. lampposts and street signs) seemed threatening - at the time (and now) I had no idea why, and started repeating phrases to myself to try and calm myself down. You know how sometimes in documentaries the camera zooms in on certain parts of a scene while the narrator gives an overview, e.g. when describing a city the camera gives a panoramic view and then zooms in on certain shop signs or notable features? Once I'd recovered, I thought about how the stimuli can appear like that - as though my eyes zoom in on them and they take up my 'screen'. When we left the shop it took me another half hour to recover - at one point we stopped off at another shop, I had enough awareness and ability to speak (sometimes shutdowns render me mute, it's really frustrating) to say that I'd stay outside and wait. Every so often in daily life I actively think about being conscious, and become more self-aware: coming out of an Aspie-attack is a bit like that, where suddenly I'm aware of being 'me' again. That said, I can choose to think about being conscious, while I can't snap myself out of an Aspie-attack. I'm wondering if it's like my depression in a way: I can't end the bad spell, but can try things that stop me feeling worse, or at least keep me safe until the spell ends. Then again, things that might stop me feeling worse include rocking or other Aspie behaviours, which I can't do while in public. Hmm, might think on this while I'm calm.

The backpacking itself was amazing - two nights in Brussels, then over the border for two nights in Mosbach, then to Garmisch by the Alps, then Munich, Ingolstadt, Kaufering, Nuremberg, Wurzberg, Cologne, then a final night in Brussels again. We camped most nights except in Mosbach and Kaufering where we stayed with friends of Clare's. In a way I'm pleasantly surprised that I didn't feel my traits until the last day, given the constant changes and uncertainties, then again I had the travellers' mindset of 'Let's go with the flow and see what happens!' I got back home on Friday evening: I now appreciate my mattress and pillow more than I did before!

Speaking out

So a while ago I was in a short documentary on the myths surrounding Asperger Syndrome, and wrote a blog post on that. Today the National Autistic Society (NAS)'s Twitter account, which I've been following for the last few months, put up a link to that documentary online. I'll admit that my initial reaction was "Oh shoot, people I know might see this." Then I thought, why shouldn't they (you?) see it? I'd love for more people to know about Asperger Syndrome - when I write my blog posts here I sometimes hope that people I know will read and learn more about how my condition sometimes affects me. Maybe it feels a bit different in that my blog posts are written text, while the documentary shows me speaking - than again, it always feels awkward watching videos of myself (a universal issue?).

I'm happy to talk about my Asperger's and depression if people ask and genuinely want to know, then again it feels like a bigger step to go and make the first step of starting a discussion about it. Maybe I feel that the documentary is a way of me making that first step, something I have difficulty with in social communication anyway. Then again, I have to push myself - how else am I going to challenge stigma if I don't talk? I'd love to live in a world where we can talk about things like autism and mental health openly without stigma, being someone who speaks out and tries to change our current world into this one is difficult. I think it's something that I have to do, though.

So I'll be brave, and post the link here:
https://vimeo.com/66121269

I'm not sure I'm brave enough to post this elsewhere, though. That's a cowardly thought. I'll put it with the link to my blog on my facebook page, and see if anything comes from that. No, I'll put the link up on my status, and try to hide from the internet for the rest of the evening. It feels like a huge step.

Done. Now to distract myself playing Katawa Shoujo again (I replayed Rin's path yesterday, today I might play Shizune's since I remember that one least well).  

Also, the NAS Twitter page is worth following for finding out more stuff - I feel like I'm advertising here.

Children

Having just finished my undergraduate degree (BSc Hons in Psychology with a 2:1, I shall allow myself to show off here!), I'm wondering what to do with myself next. Not knowing what's coming next is a bit daunting, but I think most graduates feel like this at the moment. In answer to the question of "What next?", my mind is consciously thinking along the lines of further study (I'm waiting to hear back from a postgraduate course in mental health), or finding a job (something mental-health related would be awesome) if that doesn't work out. On the other hand, recently I've somewhat subconsciously become more aware of the presence of babies around me - "Dear goodness no, not yet!" is what my mind has to say to that!

I would love to be a parent one day. Some Aspies I know don't want to have children, but it's something that I've wanted since I was a child. I like to think that I'd be a good parent, but I don't know if having children would be wise.

Mum and I have sometimes talked about how many members of our family have been diagnosed with autism, and how many we believe have some form of it (including Asperger's) without necessarily being diagnosed. Assuming a genetic basis for autism (I won't argue about the possible causes of autism here), based on the instances in my family, a child of mine has a good chance of having some form of autism. While I do worry about how I'd manage a child with autism, my main fear is how they'd cope.

Growing up with Asperger's wasn't at all easy for me. I had few friends, felt left out a lot, and was often scolded for doing or saying something inappropriate which to me made perfect sense at the time. I had difficulty fitting in, and was aware that others had difficulty managing me. I'd wake up in the morning and worry that I'd unintentionally do something wrong to upset someone that day, which often did happen. Learning social skills and cues consciously took a lot of trial and error, and I'd try to adopt certain behaviours to fit in that didn't feel at all natural to me. Academic success didn't make up for the fact that in most other respects, I near-constantly felt like a failure.

Would having a child, knowing that they have a good chance of going through that pain, make me selfish? Why bring somebody into the world if they'd spend years trying and failing to fit into it? While I know that I could adopt a child (I'm not ruling that out at all), there's still the part of me that (instinctively?) wants to pass on my genes and create a new life. The worries about having an autistic child have been in my mind since I was in my mid-teens, and have recently popped up more strongly - while I tell myself that there's no use thinking about it until I plan on having children, which I imagine won't be for many years yet, still I worry.

Shut-down

"It's hard to watch someone you love having a shut-down."

I love reading chapters that start off with a quotation, then explain the story behind it (providing they're written well, that is). Most of my attempts at story-writing (to date I've only finished one story, not including a 9-page story that I wrote when I was 6 about a cat called Colina) have a couple of chapters where a character says something, and the next paragraph or two sum up what led to that statement. This has gone off on a tangent somewhat, I'll get back to my original point.

I was at a buffet with my mum last week, and after finishing dessert I said that I was tempted to get seconds. She started to warn me about eating too much dessert: given that I've recently come off a strict diet regime and still have issues with food (I wonder if I'll ever feel fully in control of what I eat), I took this quite personally. A passing waiter said in Spanish that I could go up for more: Mum translated this for me, even though I understood enough Spanish to know what he said. The combination of feeling hurt about having someone try to control my eating for me and having someone assume that I didn't understand a basic Spanish phrase (this was my thinking at the time, likely this isn't justified by her standards) led to me having a shut-down there and then.

Before I go into talking about my shut-downs, I'd like to point out that I've been told for most of my life that I take things too personally. I'm sure I do by other people's standards, but I don't see how I can help feeling offended by something that hits a raw nerve, even if rationally I can tell myself that there was no malicious intent behind a statement.

It's a bit hard to describe what a shut-down is like. To me, it feels that the world slows down: I become far more aware of my own presence, and the presence of others. Stimuli such as lights and sounds become a lot more intense: if I'm talking to someone and a shut-down happens, my attention is still on them, but other people and objects become just as intense and demanding of attention. Trying to focus on just one thing, namely the person I'm talking to or the task I'm doing, is a lot more difficult with all the extra stimuli taking up my attention. Words that people say to me are taken more personally than they otherwise would be. My thoughts get jumbled since I'm taking in so much information while trying to attend to a task or conversation at the same time. Since the world feels slowed down at that moment, it feels like I'm stuck and can't progress out of that phase.

My behaviour during them has varied over time: my instinctive response would be to indulge in Aspie behaviour like rocking or covering my eyes and ears to block out the world until it's over. I'm tempted to cry or shout to get out my frustration. I want to run away to somewhere away from people, to be alone in a place with few stimuli to take my attention. Since none of these are really appropriate when I'm in a place with people - I often have enough control to not let these instinctive behaviours occur - I go into what my mum calls 'Soldier mode'. My answers and movements become robotic: I either say nothing at all, or my responses are short and snappy, and can be hurtful since I can't really think them out beforehand. Sometimes I can give longer responses which make little sense and I often end up contradicting myself. My body gets tense and I can grip things quite tightly. My voice becomes a monotone. I don't feel that I'm in full control over what I do and say: my 'Soldier' behaviour seems to me (in hindsight) like a defence mechanism, to stop myself from escaping or indulging in Aspie behaviour, while trying to block out the intense stimuli and trying to not show the hurt that a comment has (almost always unintentionally) made me feel.

My shut-downs can last for a fair while: sometimes it's an hour or two (sometimes up to half a day) before I realise that my thoughts are my own again. Things that can help me to come out of them are being on my own, and focusing on just one thing such as reading a book or fixating on a wallpaper pattern. I don't always remember exactly what I say and do just before and during shut-downs, it feels like I'm conscious but not fully aware. I resolve to try harder next time to not let a comment get to me so much, then feel worse for being so sensitive. Usually at this point I apologise to Mum, who's often the one present when a shut-down occurs: she says that after I have a shut-down she feels that she has to walk on eggshells so as to not upset me, which makes me feel worse.

I can see why it hurts her when I have shut-downs. But it hurts me too: it's not as though I'd willingly put myself through them.

Advising on interacting

Yesterday I was asked if I could give any advice on interacting with somebody with Asperger's, as someone who has this condition. It's very hard to say without knowing what this person's needs and traits are - what applies to me might not apply to them. Some people I know don't like others looking into their eyes, while I feel a bit hurt if someone doesn't make eye contact when talking to me (unless I know that they have a reason for not wanting to). I think the main thing is to not make assumptions, and ask if things are unclear. The person who asked me this apologised for asking me such a personal question about my condition, but to be honest I love talking about myself and my Asperger's to anyone who's willing to listen!

Two exams to go - earlier I let out a few small shrieks and jerky-slapped a bit while revising, I didn't feel agitated as such but had a bit too much energy and this helped settle and focus me a bit. Exams are going alright on the whole, I'll be glad when they're over. Saying that, I am truly grateful for the opportunity to study at this level.

Echolalia

Hmm, the new look for Blogger is confusing.

Anyway, I have exactly 12 days until exams start. I was feeling quite calm about this, until yesterday afternoon - a revision lecture which made me doubt just how much I knew led me to stress. I show stress in different ways: yesterday I ended up getting echolalic while on the phone to my mum. While her shout brought me out of it, I haven't felt that stressed in a while. Today I feel a lot calmer after taking yesterday evening off, but I hope that my traits don't start interfering with revision.

Resolution

Over Holy Week I took part in the Student Cross pilgrimage (http://studentcross.org.uk), and walked for about 100 miles from Dovercourt in Essex to Walsingham in a group of 24, carrying with us a large and fairly heavy wooden cross. It was a really fulfilling week on a spiritual and social level, and importantly this gave me a lot of time and space away from everything to think. One thought that kept coming up was about having Asperger's, I'll try and put it into words here.

Since my diagnosis, I've been using my label of Asperger's as a reason for my social difficulties - this has led to the unhealthy mindset of not trying to overcome my problems. Rather than try to overcome my issues such as inability to speak naturally and slight anxiety in groups, I've taken to thinking that I don't need to push myself because I have Asperger's. While this has meant that I've avoided initial discomfort in group situations, it's also meant that I've taken to defining myself as an Aspie, and less as a person as a whole.

Over the pilgrimage I didn't feel my traits at all except on the first night when I knew nobody, and then I worked to overcome my issues and be involved in the group. I'd be seeing just these people for the next 6 days and so I'd have to learn to relax with them, I told myself. And after a day or two, it was natural - more natural than things have felt for a fair while. As we walked, sometimes we'd talk to the person next to us, sometimes we'd sing as a group, and sometimes we'd walk without speaking. And that felt natural too - to know that just because I wasn't talking to the person beside me didn't mean that things were awkward, or that we had nothing in common. Not to say that there weren't moments where I felt that social interaction was difficult, but then I didn't think twice about pushing myself to overcome the awkwardness I felt as I'd done countless times growing up.

In short, I forgot that I'm an Aspie, and remembered more that I'm Catherine. I'm an Aspie, yes, but I'm also a story-writer, a student, a singer, a player of video games, a good listener and a terrible footballer. One person on the pilgrimage asked me on the second day what I enjoyed doing, and I had to think for a second about that. Over the week as I sang and prayed and talked to others, I thought more about the things I do and enjoy, and what makes me the person I am.

By the end of the week I'd come out of my shell, as it were - the way I'd always done in the past when meeting new people. That's part of who I am, likely because of having Asperger's, but I'd decided then to not let this rule me. In the same way that I have depression and fight it, I'm going to try and fight the Asperger's traits that make things difficult for me. I'll have bad days, granted, but the negative parts of my condition don't have to affect everything I do. I don't have to be aware of being an Aspie all the time and take that into consideration with every small thing I do - if and when issues arise, I'll deal with them as a strong human being with the support of those around me.

That sounds motivational, no?

I'll end this post by talking about the very end of the week. Each of us was given a postcard just before we left Walsingham, on which the other members of the group had written comments. Most of mine were of the generic 'Nice walking with you' type, but one comment said 'Your quiet presence is an asset'. That stuck with me: yes I am quiet, but that doesn't mean that I'm not involved in things. I felt empowered by the end of the week, and having somebody say that I had 'presence' in the group really meant a lot to me.

Sometimes it takes being away from everything I know to remember that I am a person, and not just a label or a condition.

Ordering fridge words

Apologies for the lack of posts - this term's been a fairly hectic one balancing university/home/other life-related things, so I haven't had much time to think of something worth posting. Now it's the Easter break, I have an essay and a dissertation to write as well as revision, so I probably won't write much in the next few months. That said, I started up this blog during exam season last year, so maybe it'll serve as a procrastination tool.

Anyway, last week I felt a bit bored at one point and decided to order the fridge-magnet words. I mentioned in an earlier post that I'd made them all face up: this time I placed them all on the fridge by letter so that all of the a-words were together, followed by the b-words, etc. Yesterday as an essay-break I arranged them into alphabetical order: this was made easier by the fact that they were already in letter order. I had fun ordering them, it cleared my mind a fair bit. Amy said that they seemed intimidating like that, since nobody would want to ruin the pattern by making sentences on the fridge with them. To be honest, I'm happy enough for them to be moved around and mixed up again - I think of it like when I order my books on the shelves, it's not going to stop me from reading them and putting them back in the wrong place. There's just something about putting them in order that makes me smile, even if they don't necessarily stay in order for long.

What else has been going on? I finished my project on Asperger Syndrome for my dissertation, now I just need to write it up. I should really get back to my other essay now (on the concept of 'resilience'), I might blog about my project another time.

One more thing, please.

Please don't talk over me when I'm speaking.
Please take breaks in your speeches to me to allow me to respond.
Please don't tell me what to do, or how I should think.
Especially don't tell me how I should feel.

Please don't assume how I think or feel.
Please don't assume that you know what's happened to me.
Please ask me if you're unsure, I'll be as honest as I can.
Please don't assume that you know the right answer.
For that matter, don't tell me that I assume I'm right. I rarely do.
Please don't tell me that something will certainly help me - you're not me, so what works for you or for other people with Asperger's won't necessarily work for me.

Please don't compare me to other people. I'm myself.

Please don't assume that I don't want to talk to you.
Please don't force me to start talking to you or to somebody else, either.
I might not talk often, but please listen to me when I do.

Please understand that I don't always understand you.
Please understand that I do want to, though. More than anything.

Hating my condition today

I think that this is going to be a difficult one to write, so please bear with me if my words don't come out quite right.

I hate this condition. Today I hate having Asperger's, I really do. Most days I'm not fully aware that it's there, but some days like today it seems to take over. And I cannot stand it.

On Saturdays I never really know what to do. I don't have anywhere to be, but since my housemates are in I feel antisocial if I spend the whole day in my room. I never know what my housemates are doing, though, unlike on weekdays when I have a rough idea of when they'll be in the house, and what they'll do when they get back after work/uni. Sometimes we're in the same room and I don't know what to say or do - earlier I stood in the corner of the kitchen drinking glass after glass of water, feeling unable to go back to my room (leaving when another person's still in the room is hard for me, it seems too rude to just get up and leave) yet having nothing relevant to say to my housemate who was there at the time. I'm sure that can't have been wholly comfortable for her either - I was aware of that at the time - but didn't know what to do. Sometimes I've ended up drawing on the blackboard in our house for this same reason, or rearranging the magnetic words on the fridge. I don't have the words to explain this at the time, though, and I try to avoid bringing up what happened earlier in the day when I'm more able to talk - I think that might be more cowardice on my part than anything.

Another reason why I hate having Asperger's: talking is still a major issue for me at times. I can have conversations - if the other person initiates it. I cannot start conversations except with a certain few people (I can think of only 3 off the top of my head), or if there's something going on at the time that I feel needs to be discussed (e.g. I can manage "Hi, how are you?", "How's your week been?", "How was the play you've just come back from watching?" and similar phrases, but have trouble knowing other conversation starters). If the other person initiates a conversation and I reply, then they reply to that and so forth, then conversations are fine. Thankfully most of my friends are talkative, so this mostly works. However, with some people they rarely start conversations, or otherwise will say little to my replies, and the conversation dies. It troubles me a lot, and I don't feel able to keep a conversation going otherwise. That's happened a few times this week. When it happens with one particular person, this really saddens me: they probably feel quite frustrated with me, and I wouldn't wholly blame them.

Another reason why I hate my condition. When I was a child, if you weren't brave enough to ask to join in an activity, then you had to wait until you were invited. I'm still like this: when a bunch of people are doing something (e.g. singing, playing games etc), I don't know if they'd accept me joining in. Even with people I know, it still feels uncomfortable to just join in, yet asking seems a bit foolish too. Sometimes I just end up stuck, wanting to join in but not knowing how and in the end standing there awkwardly. Tonight when this happened with a piano/singing session, I stayed for a while, also feeling unable to retreat to my room since there were still people around (I've already discussed this in this blog post) - in the end I did leave as quietly as I could (I was then invited to join in with my violin, but felt too out of sorts at that point to say yes), curled up on my bed and cried softly while staring at the patterns on the wardrobe. After about ten minutes of staring at the wardrobe and then at the bedframe, I calmed down enough to get off the bed, read for a bit, then come to the computer. I'm still feeling a bit low, and frustrated with myself for not managing social situations well.

I was brought up to be as normal as I could be. The thing is, while this meant that I can live independently and on the whole manage my life well, it hurts a lot when I can't do something. It's as though by pushing boundaries, it's more frustrating when I find barriers that I can't cross. I try and I try, but while things do improve, they're never at the level of 'normal' people. And this saddens and frustrates me to no end.

Part of me wants to go back downstairs and rejoin the others. On the other hand, that involves being in a social situation, and I'm not sure I can manage that right now without feeling out of place - and that wouldn't be fair on them either, if they see me being uncomfortable. I hate days like today. They're thankfully nowhere near as frequent as when I was younger, but still. I want to be normal.

Katawa Shoujo

Yesterday I finished playing Katawa Shoujo. It's a visual novel set in a school primarily for students with physical disabilities or health conditions: it has amazing storylines, music that makes me cry, and really well-developed characters. Initially I saw the page for it on TV Tropes and thought that it sounded cliched: then I played the beta, and realised just how good it is. The full release came out last Wednesday, and I finished the game with all of its endings on Monday afternoon.

Anyway, other than rhapsodising about a really well-made game (it's free to download, I really do recommend it), I felt while playing that at least two of the characters have Aspie traits, even though it's not stated in-game. So I thought I'd write about them here.

The first character is Rin Tezuka. One of the students, she's a painter who has no arms, whose thought processes seem to make no sense to the protagonist. She gets to the point when trying to get information, at other times she seems to ramble on about seemingly-unconnected thoughts that make sense to her. At one point she goes into her hallmate's room to follow a cloud, seemingly undistracted by what her hallmate's doing at the time. She prefers to eat lunch alone or with one particular friend Emi (plus the protagonist, if you follow her route) and at one point when lots of people ask her questions, she breaks down and is unable to respond. Further along her story, you learn about her insecurities about herself and how she pushes herself with what she feels she ought to be doing, and how she's bothered by how she can't be normal.

The second is Yuuko. She's the school's librarian, who often chats to the protagonist (whose name is Hisao, by the way - he's in the school because he has arrhythmia). She tries very hard to adhere to her job roles as librarian and waitress in a local teahouse, and panics about them fairly often. She is nervous around people, and claims to not be good with words. She speaks her mind, then stumbles and worries about what she's said. However, she is good at listening to Hisao's problems, and tells him stark truths that help him see things more clearly.

When playing, I thought that Rin and Yuuko seemed like they'd certainly have Aspie traits, if not actually having Asperger's - the developers haven't confirmed or denied this, then again they've been a bit vague about some of the characters' non-physical conditions.

I feel like writing more on Katawa Shoujo, but am not sure what to write that won't spoil the endings.

I started out aiming to follow the character Lilly's route (she's my favourite character, a kind-hearted girl who's blind), but ended up on Emi's route instead (she's a runner whose legs were amputated prior to the story - she uses prosthetics). After Emi's route (each route took me about 5 hours to get all of the possible endings), I played through Lilly's, which was absolutely beautiful and left me really moved. Then I played through Hanako's route (Lilly's best friend, who's emotionally and physically scarred as a result of a severe house fire) - the scene for her bad ending took me so by surprise that I literally jumped, and her good ending brought me to tears yet again. Then I played through Rin's route, that made me think about the possibility of her being Aspie (in the beta I hadn't really considered that, then again the playthrough time of the beta is about an hour and a half per route). Finally I played through Shizune's route: I didn't much like her in the beta, so I left her route for last (she's deaf-mute, and imposes her will on others quite forcefully as head of the student council) - I appreciated her more as a character, but still don't really like her. Still, that's subjective. I'd order my favourite characters like this: Lilly - Rin - Hanako - Emi - Shizune. Admittedly I wasn't that fond of Emi before the game's full release, but grew to really like her as her story went on.

It's free to download, so I really recommend playing it. It's far better than I could describe.

Ordering words

I like ordering things. Putting things in order, that is. When I first move into a place, I try to force myself to leave unpacking my books until last: otherwise I can spend over an hour sorting them, then changing my mind and re-sorting them. In this house they're sorted according to what they are (fiction, real-life, textbook) and then by author (if I have the time), while at my parents' house they're sorted by height order.

Lately I've been busy with essays: for me this is naturally accompanied with procrastination, unfortunately. At one point I found myself in the kitchen talking to Cat: in our kitchen we have a bowl of magnet-backed words that we put on the fridge to form sentences. While talking I sorted through the bowl of words so that they were all facing up: that was quite soothing, and I felt quite excited when all of the words were facing the same way. I did feel tempted to put them in alphabetical order: that would've taken too much time and space, though.

Just to clarify: I don't get upset when things aren't in order, which is what most fictional portrayals of Aspies seems to show. I just prefer it when they are in order: I think it's a bit like saying that my favourite colour is purple and that I don't object to other colours. Have I mentioned that my room in this house is purple? I do love it.