Trade-off

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

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

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

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

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

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

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

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

Being too quiet and not Aspie enough

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

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

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

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

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

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

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

To The Moon

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

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

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

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

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

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

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



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

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

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

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

Isabelle: I know.

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

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


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

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

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