World Autism Awareness Day 2017

There's plenty of awareness of what autism is and isn't nowadays. However, for me it still feels like I'm supposed to be either symptom-free and fit into the world with no problems, or too impaired to function as a non-Asper. The reality is that a lot of the time I fall in between these two. I see a lot of articles highlighting that people with autism are great workers, then the article shows that person working in a job with little social contact. And that's great for those people, but I feel that there still isn't much awareness of how autism affects those of us living a social life and working in social jobs (I'm training to be a psychologist, what's more social than that?).

Sometimes I feel a bit down when my social skills aren't quite up to par. Then on March 5th I got an email that helped me to put things into perspective and think about how I'm progressing.

A few years ago I came across the website FutureMe, where you send an email to be received in the future. Occasionally I'd remember that I'd sent myself one or two - I'd expected that I've have sent one for my 25th birthday and was a bit surprised that one didn't arrive - but had largely forgotten about it. So it was a surprise to see an email on March 5th titled "'tis I from 2013!" and to read how I felt back then, and what my hopes were. I'll share here what I wrote to myself back then:

Dear Catherine,

It's 5pm on March 9th 2013. Yesterday I finished my placement at Rowan House Hospital in Norwich, my first job. I'm sad that it's over now, I felt that I did well there. I had a debrief with my supervisor yesterday, I came out of it feeling low - it felt that while my work was good, I hadn't been social enough, despite her and my officemates knowing that I have Asperger's. I thought that they'd understand better than most, but it seems that being me - quiet, reserved, not speaking my mind to strangers - right now is not good enough. That hurts a lot.

I'm sending this email quite far in the future, so that hopefully I can read it and smile at how I was back then. By now I'll have had more placements and opportunities to work, and I hope that I'm somewhere where I'm appreciated for being me, and that I don't feel that I fall short for not being 'normal'. It's okay to be me. Remember Katawa Shoujo, how Rin's path ends with her stating that she's realised this? I'm trying to be like that, but at times like now it's hard. Still, I'm not going to lose myself, if others have an issue then they can tell me and I'll do what I can.

I've learned a lot from my first placement, and from moving to Norwich. I found a place to live, and when it wasn't good enough I had the guts to say that. I found a second place to live, and am settling myself. It doesn't feel like home, but I'm accommodating. I managed 8 weeks of early mornings and focused work with few breaks. I managed to get liftshares with my coworkers, and managed (albeit in my own way) to talk to them. I went to a care planning meeting and said my name to the group. And I did great work, with such little direction from my supervisor. Dad told me that I've learned how to not be a supervisor from her - he said that it would be like him becoming a foster parent, he has the room in the house but not the time and resources to devote to helping a new child. I did my best, I moved away from the people I love and care about in Coventry to come here, and while I haven't yet found friends here, I managed. And am still in one piece. True, I've broken a couple of times, but it's been managed well.

Hindsight's a great thing: I could have done more with what I know now (namely chase your supervisor!), but then it's been a learning experience. And while I might not have done as well as others could have, for a 22 year old Aspergirl I've done amazingly. For Catherine, I've done brilliantly. I just need to tell myself that.

I tell you this, 26 year old Catherine, so that you can smile at the young inexperienced person that I was. And remember that even if it seems that others are doing better in some respects, for someone so young and with social difficulties you are doing wonderfully. Please don't forget that. And don't forget that you are loved, so much loved, by friends and family. And that new people can like you too. My supervisor told me that I'm not imposing on people: please remember this, but don't push yourself so hard that you break.

So be yourself, show others how much they mean to you, and remember: be happy, if not overall happy then change situation/outlook, and accept that not being happy 24/7 is okay too. Look after yourself, try to not beat yourself up over things, and when things are hard talk to someone, or do something nice for yourself. It's okay to do that since you;re not hurting someone else. Be honest to yourself, recognise your limits, and try to let others know these limits.

I'm not a neurotypical, so I have issues in some ways. I keep trying to overcome these, and I improve every time a situation comes up. Don't give up improving yourself, not to please others but to help yourself to grow. And the people who matter will realise this.

Take care, will I send another letter to my future self on reading this? I hope so, receiving one yesterday from myself just before I started the placement helped. It ended by reminding me that I am loved, and to not lose myself since I am awesome. It's true, please remind yourself of that.

22 year old Catherine

I feel I've come a long way from the person I was back then, and even further from the person I was when I started this blog. I'll put some thought into what I'll write to my next future self, and let her know that she's doing well, wherever she might be at that point.

The opposite of attention-seeking

Sometimes it's easy to remember the bad events, and to forget the length of the periods of time in between.

Last night I went to a board games meet-up in Spanish - I travelled there with a friend I'm staying with, and knew that there'd be three or four others who I knew there.Just before leaving the flat, I learned that there'd be twenty of us in total, larger than most groups I go to - I regularly go to a different games' group with smaller numbers, in English, and after the first few awkward meetings I feel very relaxed there. In comparison, I'd only been to the house where the Spanish board games were to be played once before, and that was with a group of people I knew fairly well so I didn't feel tense then.

Things were good until we got to the road where the host's house was, and were joined by someone who my friend knew. From that point my brain went into Asper-mode - I could barely give responses to conversation (this has happened in English as well as in Spanish, so I doubt it's just a language thing), felt very lost in conversations despite understanding what was being said, had trouble filtering out other conversations going on elsewhere, and just sat awkwardly and a bit tense in silence for a lot of the evening. A few times people drew attention to this - my brain helpfully didn't come up with a response - and I'd just smile awkwardly or say a few words. Once the board games themselves started, I was mostly okay since that gave me something other than social conversation to focus on.

By the end of the evening I was feeling pretty rotten, despite having enjoyed the games we played. On the train home, due to lack of seats I sat opposite my friend, who was talking to a person we'd met that same evening. When people are sitting opposite me in a loud environment I find it really hard to attend to what they're saying, since it blurs in with the other noises that are going on at the same time. I found it really hard to join in the conversation too, even though we were just three people, and only felt my 'talking ability' switch back on when it was just me and my friend sitting next to each other, and even then I needed to 'warm up' into the conversation. We ended up talking about how quiet I was, I told her I was Asper ("Really? But you look me in the eye..."), and we talked about social skills in general. See, when I talk about this sort of thing with non-tistics, it feels like I'm not making enough of an effort. Even non-tistics who have difficulty in social situations can learn tricks to make them seem more personable, so why am I not as good despite having tried different strategies to manage well in a group setting?

Then my friend hit the nail on the head: I hate having the attention focused on me. And that's what happens when I talk and people turn to listen. Or if someone asks me a question, the attention goes to me as people listen to me answer it. Despite having spent a year and a half getting in front of classrooms of kids, I really hate the attention. I dropped out of my improv theatre group because I dreaded the thought of having the room's attention on me, even though they were a supportive group, and actively avoided being in scenes whenever possible. We talked about how I need to be okay with getting attention, otherwise how will people know me or want to get to know me? This is something I'm struggling with at the moment, having only just started to get a social network in my board games group a few months ago, and feeling down about not knowing how to attract a romantic partner (the social skills books that I read as a child and teenager, and later forum posts and advice webpages, couldn't cover that effectively).

It's perhaps not surprising that after this, I had a bad night when we did get home. I still felt a bit sad about it the next day when I spoke to a good friend from home. She pointed out that when she first met me, and for quite a while after, I was almost always like that. It's true, looking back - I'd always clam up in groups, even with my friends from my church group who I trusted. I thought back to the indoor picnic I went to where all I could do was stand in a corner for an hour despite wanting to join in - back then I often expected myself to react that badly in social gatherings since that was common. Last night I didn't go with the expectation that I'd screw up socially, and while it hurts that I did, it's better that this isn't my norm anymore. Even looking back over this blog, I hadn't felt Asper in a while despite having attended different events, and even this wasn't a full-blown Aspie-attack.

I do want to be more social though, and while I've come on a long way in the last couple of years, last night reminded me that there is still quite a way to go. Now I just need to learn to feel okay with attention sometimes being on me.

The importance of social rules to an Asper

Over Christmas, someone I'd not seen for a while reminded me about this blog. To be truthful, I didn't feel that there was that much to update the blog with - no new musings on autism, very few Aspie-attacks, if anything I was thinking less about being Asper than before I'd come to Spain. That said, maybe that's because here my thoughts were more to do with my struggles as a foreigner.

Then there's this nagging thought: I've been here for more than a year, and still don't really have friends as such here outside of work companions. This particularly strikes me when I realise that there's not really anyone here to talk to about my problems (or indeed my experiences and day-to-day things) who'll take the time to just listen to me, which I came to take for granted with my university friends. Things came to a head on my 25th birthday: when relating my birthday to one of my good friends from the UK, it had some painful truth when she said that my best friends here are all aged under 12 (the joys of working in a primary school).

Part of the issue I feel is the culture. Over here there's a culture of going out in groups to a bar: I regularly do this with an improv theatre group I've joined, and have tried going out with games groups, but I feel extremely uncomfortable in bars due to noise and feeling crowded and having to filter out lots of conversations to focus on just one (this is more difficult in a second language!). Another issue is, unsurprisingly, the language when I'm with Spanish speakers: I'm mostly confident in my Spanish, but when people are relaxed and speak very quickly using colloquialisms, it's hard to follow conversations. For that reason most of the groups I've attended have been in English, and even then I've sometimes Aspied-out or not been able to continue a conversation that naturally. Another issue as I see it, as I was musing with another UK friend the other day, is that in uni most students are actively looking to make friends since we're all in a new environment, whereas trying to break into existing friendship groups or to make friends with someone who's not actively seeking to expand their social network is harder. I don't know if being Asper has that much of an impact, or if this is common to many people who move abroad.

When I first arrived here, there were people who did make an effort to reach out to me, but those friendships didn't go as I'd hoped. Maybe my expectations of a friendship are different due to culture, but I wonder if I was more affected by things because of being Asper. Someone in the summer assumed that due to being Asper I don't empathise with people and don't have deep emotions - I wish that this misconception would disappear. I've certainly felt very upset over friendship issues, if anything more so because as an Asper, social rules are 'unbreakable' to me.

For example:
- Please don't say "I'll be there for you whenever you need me" if you can't take time to support me when I tell you that I'm struggling.
- Please don't make empty offers to help with something.
- Please don't treat me as a friend in one setting and treat me poorly in another.
- Please don't repeatedly say we'll meet up, and then not make the time. Especially if you then meet up with other people - hearing "I can't meet up with you because I already took the time to meet with X" is pretty hurtful, be honest if you won't take the time for a specific person.
- If I ask you how you're doing, and support you when you vent about your issues and encourage you when you have difficult things going on, I expect you to ask me how I am and do the same for me.

One of the hardest things about working in a school, to be honest, is that I have to put on a happy face for the kids. Sometimes when I'm emotionally exhausted from supporting others and don't seem to have anyone nearby who'll listen to me, without interruptions or assumptions, or who'll genuinely ask how I am and be interested in the response, I'm tempted to just give up on trying to form or build on connections anymore. I really don't want to be a reclusive Asper - quite the opposite - but it seems that I'm only keeping going right now by 'putting on a stiff upper lip,' and I don't think I can keep going like this for much longer.

Still a way to go...

Earlier this week I had a nice phone call with my brother - he's non-verbal, so our phone calls usually consist of me enthusing over the things his carers have told me he's been up to and speaking to him happily about my day. Usually he only listens for a few seconds, maybe half a minute if I'm lucky, before he pushes the phone away. This time after he pushed the phone away the carer who came back on told me that he was clapping, which he does when he's really excited, so I'm feeling great that speaking to him left him feeling this great!

I was relating this to someone earlier today, who I thought I'd told about my brother. It turns out that, at least to this person's memory, I hadn't explained much beyond "He has profound autism." I'm happy to explain more about him, so then I told her about what he's like day to day. Then she asked more about the theories of autism - is it something different in the brain, are people with autism aware of having different thought processes, so what parts are autism and what parts are other disabilities or personality, so how do people with autism concentrate on one thing when they're overwhelmed by stimuli, so how is my Asperger Syndrome different to his autism and to other family members' autism... It's been a while since I've had to give such an explanation and had to clear up some misconceptions (including that autism isn't an illness, for starters), and annoyingly since the conversation was in Spanish (I speak pretty well, but my vocabulary on autism is very limited) I doubt I explained things that well.

After the event it feels similar to when I've had Asper-communication fails, where my point hasn't come across because I've not quite understood the meaning of what the person's saying, because I can't find the words to express what I want to say, or because the words I use come out wrong and can mean something different. Speaking Spanish that I've learned through listening (I studied Spanish formally for 6 months aged 16, then for 8 months aged 19) is a lot like trying to speak English when my Asperger plays up. Hmm, I'd not considered it like that before. Maybe that's one way to describe what it can be like having Asperger?  Trying to learn another language by ear, since there aren't verb tables for how to 'be'. I wish I were better at picking up languages.

When I have Asper communication issues, I feel awful, but with Spanish communication issues I'm now feeling annoyed and a bit bad about it but I don't see it as my fault for not knowing how to do something. I wonder if the times when I have felt bad (beyond annoyed, that is) for not knowing something in Spanish is more due being stressed and feeling Asper? Or maybe I'm just trusting more that people can on the whole understand me even though I make mistakes, and that it isn't too bad that I don't speak perfectly.

I've gone off-topic, I'll redirect.

A few years ago I took part in a documentary to try to clear up some of the misconceptions about Asperger Syndrome, which I've blogged about before. The conversation I had earlier highlighted to me just how much more awareness-raising there still needs to be. I think that the documentary's tagline says it all, really - "If you have met one person with Asperger Syndrome, you have met one person with Asperger Syndrome."

The link to where the documentary was previously hosted is out of date, so here's the new link.

I really dislike watching videos of myself when I was younger, so today I only rewatched the first minute to check that the link worked. Even when I watched the final version of the documentary I didn't feel that I'd explained things as well as I could have, but it gives an idea of my thoughts at that time. 

Asking for reassurance is no bad thing

I'll start this update on life-in-Spain by saying that on the whole things are going really well and I'm happy, which I have to say has happily surprised me since I was so apprehensive before coming here.

Last weekend I had my first 'large' blip since I came here, and even then at the time I knew that it would pass soon. That's a fair bit of progress considering how I was a few years ago and would find it hard to think clearly when overwhelmed or depressed. This time it wasn't caused by anything too big: on my walk home from school I suddenly felt really lonely, and was quite tearful for the rest of the day and the day after.

Things that didn't help:
- I still haven't found a regular social group
- Occasionally I'm not understood when I speak Spanish, or once or twice people have spoken to me in English since they think I don't understand, and I'm too embarrassed to correct them
- Alternatively I feel bad when I don't understand something, especially since I'm still getting used to hearing different accents
- For my second month in Spain I'd had a second job looking after three young kids in the afternoons: this became too tiring and I left, so I was still feeling sad about that since I really did like those kids
- I'm still not sure what I'm doing in Spain, where does this fit into the big picture?
- I miss my friends and family in the UK
- Having social issues and initiating conversations is difficult enough in my own language, let alone in Spanish!

On the other hand, I tried to think about the positives:
- Considering I have social issues and am not fluent in the language, I'm still here and even when I was down I wasn't tempted to come back to the UK, which really sets this apart from my four-month stay in Norwich a few years ago
- Some of the teachers in the school have been really friendly and have gone out of their way to help me settle in
- I'm still trying out different groups, I had a lot of fun with a board games group where we largely talked about the games we were playing, so hopefully they'll have another session soon
- The flat and my flatmate are still great
- I had no prior experience teaching primary kids and the school's happy to keep me on for another year, so I must be doing something right!

Even though I was feeling down and didn't want to leave my room (it was a Friday afternoon when this hit so I didn't have to force myself), I was still able to think rationally and objectively consider the positives. That helped me to not get too bogged down in the sadness.

What helped the most though, was remembering that in times when I have needed support, I've received it from my friends. I no longer feel that I have to hide my feelings, it doesn't benefit me and I trust that my friends don't think any less of me for struggling sometimes. So I put up a Facebook message, and soon I was getting reassurance and support from people back home. I felt a little bit bad that this might seem a bit needy, but I reasoned that I'd want to know if someone I knew was feeling down so I could do what I could to help. Feeling cared for is such an important human need, why does culture say that we have to pretend that we can always cope alone?

In the end, one of my workmates who saw my Facebook post invited me out with her friends and their kids for the evening, which did me the world of good. Another former classmate who lives nearby suggested we meet up another day. Little by little, I'm starting to get to know people and feel more confident living here, which is great so I'm not beating myself up as much when things aren't perfect. Things're good, sometimes I struggle but there are people who'll listen and just be there, which is what we sometimes need.

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.