Being too quiet and not Aspie enough

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

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

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

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

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

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

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

To The Moon

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

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

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

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

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

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

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



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

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

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

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

Isabelle: I know.

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

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


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

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

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

What's appropriate to say

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

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

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

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

1500 pageviews, apparently

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

Mood is like music to me

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

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

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

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

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

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

Communication clashes and mental health

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

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

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

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

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

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

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

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

Zoomed-in shutdown

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

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

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

Speaking out

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

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

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

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

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

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

Children

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

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

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

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

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

Shut-down

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

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

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

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

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

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

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

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

Advising on interacting

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

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

Echolalia

Hmm, the new look for Blogger is confusing.

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

Resolution

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

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

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

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

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

That sounds motivational, no?

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

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

Ordering fridge words

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

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

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

One more thing, please.

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

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

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

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

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

Hating my condition today

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

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

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

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

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

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

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

Katawa Shoujo

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

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

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

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

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

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

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

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

Ordering words

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

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

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

I was in a documentary!

If you've read my previous post first, you'll know that there were two things that I wanted to write about. The first is about my final psychologist report: I blogged about that in my previous post. My second thing to blog about is what I'll write about here.

Back in early October (a week or so after I got diagnosed), my mum forwarded me some of the posts on an online mailing list for families of people with autism. A lot of them had studies that people with Asperger's/families of autistic people could take part in: I've done a few of those (they're very mixed, one asked about empathy towards an autistic sibling while another asked about adult fantasies...). One email was from a group in America who were hoping to film people with Asperger's in the UK for a short documentary: I emailed to say that I was interested, and a few weeks later I met up with the filmmaker. We met in a public park near to where I live, in full view of the traffic: while this meant that we had a few issues at the start with the microphone and being able to hear me over the traffic, I much preferred being easily-seen to inviting strangers into my house. I'd been sent a few questions beforehand ('What was school like?', 'How have you felt since diagnosis?' etc), so I was asked those and I answered. Than we just had a conversation about Asperger's and how it affects me in general: I think the idea was to get me to speak as much as possible so that they'd have enough material to try and get soundbites from. It was quite an enjoyable hour-and-a-half: then we packed up, and I cycled back home.

A week ago, I got an email with a consent form attached regarding giving the rights of the video to the producers, so I signed and sent that back.

Then today, I got an email with the completed documentary attached! It's just shy of half an hour long, and there're interviews with a doctor, a support-group worker, a music therapist, and four adults with Asperger's, myself included. I've just finished watching it, it's quite a well-made documentary, and I don't think I sound too foolish on camera (although I somewhat hope my voice doesn't really sound like that, it sounds far too posh!). The filmmaker said in the email that it was screened on 3rd of December 2011 at a conference in America, and that he'd been told it was "...well received, and the participants acted as wonderful advocates to help more people know about Asperger's disorder. They made a very positive impact." So I'm quite pleased with that! If the video ever becomes available on the net then I'll link it: however given that I don't have any rights to it, it can happily stay on my computer. Still, some people saw me speak about life as an Aspie, and hopefully a bit more understanding will come about as a result of that documentary to the few who watched it: that's good enough for me at this stage!

Final Asperger's report

Hopefully my lack of blogging in November will be redeemed, since there are now two main things to blog about!

The first thing to write about is the final report that the psychologist gave me. There's the report in full, and also a letter to give to potential employers/lecturers/services etc. The letter says (I'll summarise since it's two pages long) that I have Asperger's Syndrome, and the first page talks mainly about what Asperger's is and how it can affect people. The second page talks more about issues affecting people with Asperger's, and ends with a paragraph talking about how Asperger's affects me personally. It says that I am "extremely intelligent" and "able to 'learn' the things that neuro-typical people take for granted". To clarify, a 'neurotypical' person is one without Asperger's. It can be shortened to 'NT' - on a board I saw somebody ask if NT stood for 'Non-tistic', I quite like that term! Cat pointed out that by using that definition, people with other conditions affecting their nervous systems would be classified as neurotypical, but I digress. The paragraph goes on to say that it would be helpful for me to feel comfortable while working if coworkers could make appropriate allowances such as avoiding metaphors (I think I'd mostly be okay at this, though), avoiding ambiguous language and teasing (teasing with friends is one thing that I'm still adapting to: teasing in the workplace would be far worse). It says that I wouldn't enjoy office banter or small talk - I agree that while working I'd not enjoy these at all, but perhaps during lunch breaks I'd be okay. Still, it's easier to get people to start doing something, than to stop, in this case. Methinks. It talks about how if people with Asperger's do not feel understood, they can be prone to anxiety which can lead to mental health problems; but that "...with the right support and encouragement, people with Asperger's syndrome can lead full and independent lives and become a valued member of any workforce."

So I'll take that with me when I start job-searching. I intend to stay in uni for at least another year doing postgraduate study though, so perhaps I won't need this letter for a while.

Then there's the report itself: it's largely the same, but with a few differences with regard to the comments I sent the psychologist in response to the draft. I'm sitting on my bed with the draft and full reports in front of me, listening to the Katawa Shoujo soundtrack (the 'Painful Memories' theme is my favourite, I have that on loop at the moment), so I'll go through and compare.


"She can struggle to know when family members and colleagues are trying to give her helpful advice and can become angry and defensive – often feeling that people are picking on her": this has been amended to read "She can struggle to know when family members and colleagues are trying to give her helpful advice and can become quite sad, sometimes withdrawing into herself and saying very little if she feels that people are picking on her".

I think that that's more accurate.


"Catherine stated that she would become very angry if she had planned and activity and it was suddenly cancelled": this has become "Catherine stated that she would become upset, troubled and stressed if she had planned an activity and it was suddenly cancelled."

Firstly, I'm glad that she amended the typing error on 'and'. I also feel that the amended statement is more accurate: my parents and I agree that I'm not an angry person!


"If she was on her own, she would probably eat the same food every day": this has become "Catherine stated that she would prefer to eat the same thing every day, if she were not aware of how damaging that could be to her health in terms of lack of nutrition. When she is on her own, she tries to get the food groups relatively balanced, even though it is not what she would necessarily prefer to do."

I do try and eat a mix of things: sometimes though, I am just lazy and nutrition goes out of the window. Hopefully when term ends, I'll have more time to re-think my eating habits and plan meals, rather than eating whatever's in the fridge at that time.


"It may help others to understand Catherine better if she was able to explain need for personal distance and minimal touching": this has become "It may help others to understand Catherine better if those around her could understand her issues around touch. Catherine loves hugs and pats on the shoulder if she is expecting them. However, when a nurse shook her shoulders during a recent examination, it caught her by surprise, and she disliked it. When friends hug her, or other casual contact occurs when she is relaxed, she likes it. So for her minimal touching is not the issue - but touching without letting her know first can startle her if she is already stressed."

It's quite a big change, but a vital one I feel: a life without touch would sadden me greatly. I originally mistyped 'surprise' as 'sirprise' while writing this - I like the idea of Sir Prise! I digress.


...and I think those are the only changes. Mum and Dad have sent off the cheque to pay for the assessment, and I have a diagnosis. Result!

I took the report, 'employer letter', and a letter from my GP regarding my depression to disability services at university, so now my record is more up-to-date. I've applied for DSA (Disabled Students' Allowance), I think that they'll get in touch with me soon to assess me and see what support (if any) they can give me.

Hmm, I said that there were two main things that I wanted to write about. I'll write a second blog post for the other thing. Although the way that Blogger works, people would most likely read that one before reading this post. Hmm, that could be confusing. Ah well, I'll write the next blog post and see how it works out.

Diagnosis added to notes

The psychologist's final report came through yesterday! I'm very happy about this, since a) it's there in black and white that I'm an Aspie, b) I can show it to potential employers/uni administrators/etc as evidence, and c) I can apply for Disabled Student's Allowance. I wanted the report most for reason a), but it could come in useful for b) and c). The psychologist had amended it so that it included the modifications I sent (most of which I mentioned in an earlier blog post) - I'd write about those more in detail, but I'm in the Chaplaincy on campus and the report is on my desk in my house. I'll try and write another blog post about the updated report sometime soon.

After meeting with the GP, I got my diagnosis of Asperger's added to my case notes - I'm glad about that. Hopefully that'll be taken into account when treating me for whatever illnesses I may get in future - having my shoulders shaken 'reassuringly' by a nurse isn't something that I'd like to go through again! I haven't yet phoned the clinic whose waiting list I'm on for an assessment to take me off their list - I asked the doctor for their number, but by the end of the appointment we'd both forgotten.

I spoke to disability services and they've agreed to give me one-to-one essay guidance since I'm not good at expressing myself through words (I'm better at this in writing than when speaking, but it's still a problem area). I also get a bit of extra time in exams to account for this, and I can take my exams in a room in the psychology department with a few other people rather than with everyone else - I'm glad of this, since being in a large room with many other people can be a bit daunting. I was offered a room on my own for my exams - that idea scared me more than the thought of being in a large room with lots of people, to be honest!

I feel that I should write something more, given that it's been a long time since my last blog post...

Last night I sang in a concert with the rock-gospel choir, and while that was good fun it was a bit uncomfortable at times - we the choir were packed together tightly and I didn't like being touched just then; the noise was so loud to me that my left ear physically hurt; and when I saw that my violin wasn't in the exact place that I'd left it during the rehearsal, that stressed me out a fair bit. I was almost glad when the end came and I had a bus journey by myself in which to unwind, fun though the concert was.

What else...

At the moment I'm waiting for turkey to cook - Maddy and I plus helpers are preparing a Christmas meal for our society tomorrow. That should be great fun! At the moment I'm quite calm about it, although I imagine that when there's lots going on I'll get more bothered. Then again, I was relatively calm during a mini-fiasco last weekend (we the society went to Gloucester on a minibus for the weekend - the person looking after the minibus keys left a few hours early to go London and took the keys with him, so we had to sort out getting the keys back to us in Gloucester via coach and sorting out the ensuing chaos and arguments), so you never know.

Hmm, the frozen milk is defrosting on the table, and each time I type the table moves slightly and the water under the milk moves slightly. I could only see it out of the corner of my eye, it looked a bit like sparkles and I wondered if I was seeing stars. That confused me briefly, since I'm not dizzy and haven't hit my head. I'm glad that it's just water and not stars.

Wheel-that-spins

The last four days or so have been particularly busy and stressful for me, due to a combination of heavy university work and volunteering commitments. Since I hadn't had a day-off for a few weeks, I felt the strain more than I usually do: consequently, yesterday afternoon and evening I showed some of my traits. I had trouble keeping eye contact with people, and stood by myself a few times even though I was with a group on an outing. In the evening I jerky-slapped a few times and covered my ears for a few minutes when the heating turned itself on: the sound bothered me much more than usual then.

We have a toy hamster in our house: Dad bought it for me in the market one day, saying that he felt that I needed a pet at uni. Consequently the hamster, Susie, lives in a hamster wheel on the kitchen table, and by turning on a switch, she 'runs' on the hamster wheel using small wheels in the place of paws.

The point of that story is that my stress levels got quite high, and I ended up at the kitchen table spinning the wheel with my finger (Susie was on the table). It wasn't an absent-minded spinning, it was something I really focused on: hardly anything mattered but keeping this wheel spinning. It made me feel a bit more content, if not much less stressed. I don't really know how best to describe how wonderful spinning an object (sometimes including myself) can make me feel: in a way it feels good that there is something constant, unchanging, and that I have the power to make it stay spinning at the same speed. Spinning objects is something that nowadays I tend to do only when I'm very stressed: on occasion I'll indulge myself to take a few moments to spin a pen on the table. Maybe it helps because there's only one thing to focus on, whereas when I'm tired and stressed I feel overwhelmed by seeing and hearing so many things at once in the world around me.

It was at this point that Cat persuaded me to go to bed and get some sleep. I felt better today, but still had to take a few minutes to myself from a group lunch: admittedly most of the people I'd never met before, which is always daunting and draining for me. Still, I'm feeling a lot better now, although I think a good night's sleep is in order!

Waiting for Draft 2

I got a reply from the psychologist, thanking me for the comments on her first draft of the assessment, and saying that she'd send me the next draft as soon as she could. I was hoping that this would be done sooner, mainly so that I could have evidence when telling my personal tutor that I have Asperger's. I've arranged to see him tomorrow to talk about module options for this year (I'd ideally like to do 5 this term and 1 next term whereas the usual balance is 3-3 or sometimes 4-2, so I'll run my thoughts past him and see what he thinks), and I'll mention as well about my Asperger's. I think it's important to know. That said, when I told him about my depression, he said that he wouldn't make a note of it, although I could apply for an extension on coursework if need be. I almost applied for one at the end of my first term in second year - I was feeling down and stressed about some things that I don't want to go into on this blog - but my stubbornness meant that I tried to get all the work done without an extension. I did manage, but my work did suffer, so I should be less stubborn in future and recognise my limits.

I went off on a tangent just then - I'll leave it in though, even though it doesn't relate to what I aimed to say in this post.

Hopefully the revised report will come soon.

Draft report of the assessment

I had my assessment last Saturday: yesterday I was sent a draft copy of my report by the psychologist. I read it fairly quickly then (I was visiting my parents at the time and didn't really have the time to sit down and read it carefully), and today I had a closer look. Overall it seems accurate enough: I won't copy and paste the whole thing, but I'll highlight bits and pieces that matter most to me.


"Catherine reports that she does not find it easy to join in with a conversation and can struggle to follow the flow, especially if she is in a noisy environment. She feels that she is not good at making ‘small talk’."

I think I've mentioned before in this blog that I have trouble starting conversations - apologies to anyone who feels that they always have to be the one to start talking. And in loud places such as the pub, or just when there're lots of conversations going on around me - I'll admit that sometimes I lose track of what's being said.


"She can struggle to know when family members and colleagues are trying to give her helpful advice and can become angry and defensive – often feeling that people are picking on her. She often perceives advice as criticism."

I think that this is one of my greatest flaws. I truly am sorry to anyone who's been offended (and rightly so) by my response to what I later recognise as advice. I'm too proud in some respects to accept that others know better than me what I should do.


"Currently Catherine enjoys playing the Sims on her computer and can sometimes become absorbed in a game for long periods of time."

'Long periods of time' can go up to a few hours - sometimes half a day has gone by without me realising it. Sometimes people come to talk to me when I'm gaming/reading and if I'm truly absorbed I just won't notice they're there. It happens less often now than when I was a child or teen, which I see as a mixed blessing: on the one hand I'm more in the 'real world' and am aware of what's happening around me, on the other hand it takes more conscious concentration to focus on said book or game.


"Catherine stated that she would become very angry if she had planned and activity and it was suddenly cancelled."

I'm glad that this is only a draft: my parents and I agreed that I do not get angry when plans change. Also, typing error on 'and'. Anyway, Mum said that I get upset when plans change, Dad said stressed; I'd go more for 'troubled'. But not angry: I certainly like to think that I'm not an angry person!


"If she was on her own, she would probably eat the same food every day."

Yet another thing that I'd rephrase: I would eat the same thing every day, if I weren't aware of how damaging that could be to my health in terms of lack of nutrition. When I am on my own, I try to get the food groups relatively balanced.


"Catherine should take extra care drinking hot liquids and should set water temperature lower to avoid the sensation of being too hot in the bath or shower. She should ensure that pathways are clear of objects that could be tripped over. "

Common sense, much?


"She should make notes and use highlighter pens and ask for verbal information to be provided in written form."

Mum often gives me a to-do list in written form: if somebody tells me to do something and I don't have written instructions, chances are I'll either make a mistake somewhere, or forget entirely. So this is useful for others to know, when there's more than one thing to do. I don't need a written to-do list for every small thing!


"Using a bath mitt, loofah sponge or textured flannel may help to become more accustomed to different sensory experiences, as can having a deep pressure massage."

Can I just say, this sounds like my idea of torture. I'm not so sensitive that I can't be touched and hugged, so why do I need to put myself through this?


"Catherine may find that a rocking chair could prove calming."

Rocking chairs are amazing. I can rock without one, though - although I only tend to do that when I'm certain that I'm on my own.


"Catherine should endeavour to incorporate breaks and time-out into her daily routine. In group discussions she may find answering questions helps to maintain focus."

I would also find that answering questions puts the focus of a group on me, which I tend to dislike.


"It may help others to understand Catherine better if she was able to explain need for personal distance and minimal touching."

See, if I tell people that, I fear that I won't be touched at all. And I'd hate that. I love hugs, and pats on the shoulder etc - if I expect them. When a nurse 'reassuringly' shook my shoulders during an appointment regarding my asthma this summer, it caught me by surprise, and I disliked it. When friends hug me, or (thinking how to phrase this in a non-dodgy way) other casual contact occurs, I like it. So for me, minimal touching isn't the issue - but touching without letting me know first is.


"Finally, it is important to acknowledge and accept Catherine’s need for time alone away from the crowd."

If you can think of a socially-acceptable way of escaping from a crowd for a while, please do let me know!


"At times during the Vocabulary sub-test, it seemed as if Catherine knew what a word meant but struggled to find the words to describe it. She is aware of this word-finding difficulty in her day to day life."

In a way it's as though the words are hidden away, and I have to search to find them, even though I understand word meanings fairly well. Imagine I ask you to describe an apple: in your mind you probably picture the fruit, then describe it with words. I sometimes have trouble finding the words that relate to the picture, if that makes sense.


"After careful consideration of all of the evidence gathered and following discussion with Catherine and her parents, it appears that she does have significant difficulties in the areas of social communication, social interaction and flexibility of thought and would, therefore, meet ICD10 criteria for a diagnosis of Asperger’s Syndrome."

Result!


"However, it is important to note, that in common with many young women with this type of difficulty, Catherine has learned how to behave in a socially appropriate manner and her difficulties are unlikely to be immediately apparent."

Another mixed blessing: I function and adapt well enough, but that can make my faux pas seem unexpected and uncalled for.



There was more to the report than what I've just written about, but these were the more important bits for me. At some point in the next few days I'll write back to the psychologist saying what I think could do with changing (anger at change of plans; same meals; minimal touch). For now, I'll finish the chapter of the book I'm reading ('Sensation and Perception': it's one of our course books) then head to bed.

The Assessment

Today was assessment day!

...I'm not sure why I wrote that in such an enthusiastic way. Up until this morning I was having second thoughts about going for the assessment - I went to bed fairly early last night, couldn't sleep, went back downstairs to talk to Cat about my worries about being assessed, then went back to bed and had a very restless night. Finally it was morning: I aimed to leave the house at 8.30am to be there for my 10am appointment, so I got up at 8, had breakfast, then chatted to Cat for a bit before leaving at 8.40. I hopped on a bus, mistakenly got off one stop too early, but still arrived with about 25 minutes to spare. So I kept walking, then turned back and went into the centre 10 minutes early.

The psychologist met me at reception when I entered (I was surprised that I didn't have to wait at all), and once I'd signed in and had been offered tea, we went to a small conference room. There she asked me if I was feeling nervous at all, I truthfully said that I was a little, she asked if it was due to the uncertainty of the assessment, I said that yes it was. Then she started talking me through what we'd be doing: as a psychology student, it was quite interesting. We started off by talking about how I'd be taking the WAIS test for intelligence, which would rate me in terms of separate areas. She said that people with Asperger's tend to be great in some areas but markedly low in others, which should be picked up on. She said that research suggests that the corpus callosum - the part of the brain which connects the two hemispheres - doesn't work as well in people with Asperger's as with the general population, sometimes resulting in a difference in skill levels. She also gave an interesting analogy for Asperger's: she described it as having the same hardware as a typical person, but different software, resulting in different functioning. I wonder more if it's the other way round: that having Asperger's is like trying to run the same software but having different hardware, so it doesn't always work properly and sometimes results in errors. I only thought about this when I got home, though, so wasn't able to share this thought with her.

The first task was block design: I was shown a picture, and had to recreate it with blocks which had all-white faces, all-red faces, and half-white-half-red faces. I used to enjoy playing with tangrams when I was younger, and found this quite easy. After that, I was given two words and asked to say how they were similar, e.g. 'apple' and 'banana'. They got more difficult, and soon I was struggling - I knew there was a difference, but couldn't get it into words very easily. After that I was shown a sequence, and asked to pick the picture that would complete the sequence, e.g. red square-white square-red square-what next? At the end of that task I was told I'd got them all correct, that made me smile. Then I was told to repeat back a string of numbers, from two digits up to nine digits, then to repeat the digits backwards, then to repeat them in numerical order (e.g. 1-2-3). For the next task, I was shown two pictures, and had to indicate if either of them appeared in a sequence of objects: the idea was to see how many of these I could get through in two minutes. Then I was asked to define words - again I had trouble with this, even though I almost always understood what the word meant. Then I was shown a picture of a shape, and asked to pick three smaller shapes (out of six options) that would make up the larger shape when put together. I was then shown a key where the numbers 1-9 related to a picture, and I had to draw the corresponding picture underneath a string of digits - again this was to see how many I could complete in two minutes. After that I was asked some mental maths questions - they were fairly easy - and finally I was asked some general knowledge questions. There were only two of which I had no idea: I hadn't known before that it takes 8 minutes for sunlight to reach the Earth's surface, or that the circumference of the Earth is just shy of 25,000 miles. You live and learn.

After that I filled in a sensory questionnaire, asking me to rate statements relating to my senses from 'almost never' to 'almost always', e.g. 'I enjoy wearing bright-coloured clothing'. I'm quite noise- and touch-sensitive, I'm less overly-taste-sensitive than I was before university, otherwise I think my senses are relatively normal.

Mum and Dad arrived for the second part of the assessment just as I'd finished the sensory questionnaire: we moved to a larger room so that there was enough room for the three of us and the psychologist. Mum had brought the papers from my previous assessments as a 2 and 10 year old, and the first part of the interview was Mum telling the psychologist my history up to this point, with Dad adding details. Then they were both asked specific questions about my behaviour and relationships as a child, as a teenager, and I was asked about my behaviours and perceptions now, with Mum and Dad giving more details and examples. I think this took about an hour and a half or so: it was quite difficult for me to hear what I'd been like when I was younger - I was a very difficult toddler, a difficult and inappropriately-behaved child, and an overly difficult-to-talk-to teenager. I like to think that now I'm a nice person, but it's taken a lot of work to get to this point. Still, as Mum later said, there are times to gloss over the details and say that they don't matter now, and there are times - like during assessments - when the painful (to me) truth needs to be said. What's most difficult is hearing my parents talk about the difficulties I have now: even though I really, really do try to overcome these, part of that involves acknowledging that I have difficulties with some things. My parents worry that because of the way I am, I could be taken advantage of: to be honest the same thought occurs to me, which worries me.

On an interesting note, at one point I was asked what my hobbies were, I included computer gaming. When asked what my favourite game was, I truthfully said The Sims: interestingly, the psychologist said that she'd have bet money that I'd say that. She explained that in the years she's worked with diagnostic services, most of the teenagers and young adults she's met have claimed The Sims to be their favourite game - much like young children claim Thomas the Tank Engine to be their favourite programme. I'd known about young children with Thomas (I for one would insist on watching the same episodes of Thomas over and over, and collected the little model trains and wanted nothing but models of Annie and Clarabel the coaches for my first-day-of-school present), but had never heard anything about young adults with The Sims - that intrigued me. I enjoy The Sims because to me, it's a socially acceptable dolls' house, and I absolutely loved acting out scenarios with my dolls.

At the end of the interview, the psychologist said that she'd support a diagnosis of mild Asperger's: she said that my intelligence has enabled me to find coping strategies, so I should and would be successful in life, and can clearly live independently, although in some areas I will probably need support. She said that she'd write up the report in the next few days and send it to me, and that with it she'd include a detailed report of my strengths and weaknesses based on the interviews and the tests, and also - this I like - a letter to be given to employers/lecturers/support services/etc, saying that I have Asperger's, that these are my strengths and weaknesses, and could they take these into consideration. Mum said that this is what she'd wanted most for me - that I'd have something to show employers, since I'll most likely have some sort of difficulty in the workplace with coworkers or understanding instructions, to say that there's a reason for my oddities. I think it could be useful to take to university, to show that there's a reason that I can't always express my thoughts too well in my work. Dad was impressed at how thorough the assessment was. I'm glad most of all that I got a result, and that it was the result I was, in a way, hoping for.

So... now I just have to wait for the report to come through: I'm curious to read it. Mum gave me photocopies of the papers from my earlier assessments: I'd read the one from when I was 2 before, but this was the first time I'd seen the one from when I was 10. I read through them this afternoon: to be honest, if there'd been the understanding of Asperger's back then that there is now, I probably would have been diagnosed at 10, given the descriptions of what I've said, done, and the scores I gained on tests. It was interesting to read, it brought back a few memories of that time, and clarified some things I'd wondered about back then.

I'm happy. I really am. I'm not a 'borderline Aspie' anymore: to change the words of Pinocchio, "I'm a real Aspie!"

The Flower

The innocent flower sheds a tear at the world destroying her beauty...
Yet although the world destroys her beauty, the innocent flower still remains.
What if the flower were to be destroyed? What would we have then...?
Yet if the flower dies, surely we would be left a leaf? Something to remember it by?
Or would it be better to have the stem, ugly though it is, to bring a new flower to life?
Let us keep the stem and reuse it. But we need good soil to place it in for it to grow...
But where can we find good soil on this Earth? Is there any left that will allow the flower to grow?


I wrote this when I was 15: over three months at the end of some of my diary entries, I'd write one line about this flower, and I've only just put the seven lines together.

I've tried my hand at writing poetry before, and I'm not good at it at all. I can come up with ideas and stories, but I'm not good with words and with phrasing things. I can't remember why I added a picture of a flower at the end of one of my diary entries - I think I was feeling very low at the time, and felt that I was like this flower. With each line, I drew a picture of this flower slowly decaying, then of her leaf, then of the stem being planted in fresh ground. I saw it as being hopeful that I could recover from the depression I felt at the time.

Thinking about it, where is good soil on this Earth for this flower to grow? Assuming that we're using the flower as an analogy for myself as a possible-Aspie, is there somewhere where I could be and develop my full potential? Or will this flower (this sounds a bit pretentious) be in an environment that's unnatural for her, and will she just have to focus her attention to adaptation rather than self-growth? Maybe we're all flowers in this respect: sometimes we develop our full potential, other times we just try to survive and adapt.

I like to think that everybody is capable of reaching their full potential, as long as there is hope (I'm an annoying optimist in some respects).

2005 and 2007 diary entries

Thursday 16th June, 2005
Today Nicki was back at school and I felt shunted again. I think maybe I'm the one being hostile. I don't even try to join Mel and Nicki to make a group. Why? I don't like being in a group. It's either one-to-one or nothing. It's completely mad and I hate it. Why's it like that? I think I'm Asperger's, They have social problems. But I've been diagnosed as borderline, but I'm still 'normal'. I don't get it. I don't understand it. When I try, I end up getting panicky. I know that Asperger's people are like that - I researched it. I'm feeling panicky now, so I'll stop it.


I had a look through my diaries for anything relating to Asperger's: this is the first entry I found, from when I was 14. I'm still looking now, and have just found some poetry that I wrote. I'll put the poetry in a blog post, then keep searching for Asperger's references.

...later...

I found the entry where I talk about finding papers, but no reference is made there to one of the papers being from my childhood assessment for autism. So far I haven't found anything else relating to Asperger's or directly describing social issues (although reading some of the interactions, it seems clearer to me now that social issues did exist).


Wednesday 3rd January, 2007
"So we talked. It wasn't as fluid as I'd hoped. I had trouble starting at first... my mouth and brain didn't really click together. Ella suggested I write it down instead."


I was 16 at this point - this phrase sums up in a way how I sometimes get when trying to initiate conversations. I just don't know where or how to start them, and when I do, sometimes I stumble over words, or don't know when to stop, or it sounds stilted and forced. I wish that this wasn't the case: how can I rely on others to always start conversations? For the most part I get by okay, since a lot of my friends are talkative, however there are some people with whom I just don't know how to talk. If they start the conversation, this works without too much problem, then we go back to silence even though I know it should be my turn to speak. I don't know how to explain this to people, though, without seeming unfriendly and antisocial.

...even later...

I've just skimmed through all of my diaries, and have finished reading the last entry (just before Christmas of my first year at uni). I can't find anything else really relevant to being Aspie or that go into depth about social problems, so I'll leave it at this for now. That, and it's gone 2am and my eye's twitching, so sleep is in order.