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.