Sunday, 31 October 2010

On growing up as an alien robot among humans

Since tomorrow there's an awareness campaign about autism spectrum disorders running, it seems an appropriate time to write about my own experiences with ASD.

As a young child, I didn't really notice much that I was different. I didn't hang out with other girls much - they were given to playing games like 'house' and whatever that I didn't understand, whereas the boys played hopscotch and tag and hide and seek, which had rules. I played by myself a lot, too, and read books in the library. Looking back, for a child, I was pretty self-directed.

By the time I was around 8, it was becoming increasingly obvious that whatever I was, it wasn't normal. My reading level had reached an adult level the previous year, although obviously some concepts had no real meaning for me. My language development reflected the fact that I read far more than I spoke - I pronounced words oddly, and my word usage was often very formal and structured. I didn't really have normal friendships - I was already being fairly heavily bullied within my own grade, learning early the lesson that people are cruel and untrustworthy, especially children. I looked to adults and older children for companionship. My choice of reading materials varied between science fiction (Isaac Asmiov), fantasy (Tolkien - the Silmarillion was my favourite book), the encycolpedia britannica, and dictionaries. I also liked reading about dinosaurs, especially palentological taxonomies, and physics.  Looking at the wikipedia article on characteristics of Aspergers - I ticked all the boxes to a greater or lesser extent. I was feeling increasingly out-of-place at school.  Add increasing issues at home due to financial stresses in the family, and I began the long fall into depression and anxiety that have since characterised my life to some extent.

The first formal diagnosis was around age 11. High functioning autism, of the particular variety that would probably, today, be called Asperger's syndrome. This was around 1992 - Hans Asperger's definitive work wasn't really accepted as mainstream until about two years later, and certainly didn't hit the paediatric and psychological professions on Australian shores until perhaps 1998 or thereabouts. The doctor's recommendations were to get a cat, encourage social interaction, and don't let me be by myself too much. As we now know, that last one is a recipe for madness. My parents were doing what they thought was right for me - it was not their fault that best practices at the time were very, very bad for me.

I retreated from the world. I would speak if spoken to. I went to classes. Although I kept up my non fiction reading (graduating to simple chemistry, quantum mechanics, and black hole cosmology), my choices also increasingly became escapist - more fantasy fiction, much, much more. I would hide in the book cases in the library during school lunchtimes. At least, until I discovered computers - then I hid in the computer labs instead, getting there when they opened in the morning, and only leaving when I had to. I was constantly buffeted by the consequences of my lack of understanding. Imagine, if you will, a world where the only communication was the spoken word, and that word had all the emotional emphasis of plain text. Where allegory and metaphor were entirely abstract concepts with no basis in reality. Where words meant only their literal meanings to me, which had the effect of making the English spoken by everyone else a foreign language. I had technical proficiency in this language, but I couldn't make myself understood, neither could I understand the messages that were being given to me. It was much later that I gained this understanding of what was going on - at the time, I literally couldn't grasp the concept of what was going on. A bit like asking a blind person what colour is like, I imagine.

At age 13, I first became suicidal. I was intensely lonely, as well. There was quite literally no-one in the world who I could talk to - the school counsellor seemed to think that I didn't have any friends because I didn't make an effort. I was rejected by every social group except the real weirdos, and the international students. I did well enough academically, but the only real friends I thought I had were my teachers, and by the end of high school, one or two of my peers, who had similarly troubled states of mind. The only thing that kept me alive during those years was the fact of my brother's illness - I knew for a fact what happened when people around him were very sick or died, he ended up in ICU with a near-death experience. I didn't want to be responsible for his death as well as mine, so I didn't try. I also convinced myself that I was a bad person and didn't deserve such an easy way out. I must be bad, because people didn't talk to me, and shunned me, and that's what you do to bad people. In such a state, I graduated high school. I estimate my social skills were, at this time, at the level of most 4 to 5 year olds.

Over that summer between high school and first year university, I was finally told what was wrong with me - what the diagnosis I had received many years ago was. Not being told 'until I was old enough' was also a recommendation from the doctor. It was like a nuclear warhead going off in my skull. The first thing I did was read everything I could lay my hands on that had the slightest relevance to Autism, and it was a revelation and a relief. This is what I had been missing all those years. This is what I lacked - and, given sufficient effort, what I could surely develop. The next few months, using the internet, some very sympathetic and patient friends, and a great deal of energy, I slowly observed and learnt to mimic normal social behaviours. The process involved many discussions on why exactly people acted how they did - what prompted a particular behaviour, what thought, what emotion, what associations. I was - and still am, at times - incredibly distressed by the lack of literal meanings in human interactions, by the lack of straightforward relationships between thought and action, and by the sheer inconsistency from person to person. I would estimate that I spent upwards of 40 hours a week focussing on this, and working to improve my imitation of humanity. I have often described it as developing a giant look up table in my head of 'behaviour -> response', and that's a pretty accurate description of how it feels.

It's twelve years later, and I'm now 29. Even to the professional eye, I generally no longer present as having an autism spectrum disorder. It is perhaps ironic that it is the obsessive focus on minutiae that is a characteristic of the disorder that has allowed me to develop these skills. It has, to a large extent, become reflex to act this way. However, there is still large swathes of social programming that I have simply missed out on, and don't see value in adopting. I'm more comfortable in being slightly sideways from most of humanity, and on most days, can see myself as being human. I believe I have established solid relationships with other people, and that most of the time, I'm not too difficult to be around, or too opaque. Still, I'm always trying to improve.

21 comments:

  1. The doctor's recommendations were to get a cat

    Best. Diagnosis. Evar.

    But yeah, hopefully kids like us are getting better advice these days.

    Also. Damn blogspot. I forgot all about your blog.

    ReplyDelete
  2. Thank you for posting this, it must have been challenging. Stupid doctor.

    ReplyDelete
  3. To be honest, it's not the doctor's fault. The facts and treatment of the disorder simply weren't known back then. It's a pity I ran afoul of it, yes, but sometimes, you roll a 1 on the d20 of life.

    The situation has greatly improved over the last 20 years, especially in terms of awareness and understanding in the caring professions. I think children today with ASD have a much better chance of growing up relatively happy and centred than I did.

    ReplyDelete
  4. I had similar experiences growing up to you - no ability to make friends, no ability to understand people. Played with the boys rather than the girls because the boys' rules made more sense. Depression. Always reading - escaping to a fantasy world was much easier than being with people who made no sense at all. I remember being 11 or 12 and trying to work out how people knew what to say to each other when meeting etc - people always told me that I was weird or strange, so I learned scripts for what to do to fit in: when you meet someone and they say "hello, how are you?" you respond with "good thanks how are you?". A look-up table is a good analogy :)

    It was only a year or so ago that I realised that I probably have Asperger's - I don't feel that I need to get a formal diagnosis, but reading about it made me feel a lot better about being me. I realised that I wasn't some sort of friendless weirdo who everyone hated - I was just wired differently, and that's ok. Things that I do or can't do make sense now - things like why every workplace review comes back describing me as "blunt" and "needs to learn soft skills like reading body language", and why I can't carry on a conversation while someone else is talking near me.

    It's comforting also to hear that other women have had these problems - there's a lot written about men with Aspergers but less about women. Thanks for your post, Ysabet :)

    ReplyDelete
  5. Thank you for sharing your story. With your permission, I'd like to share it with supporters of Communication Shutdown to give them a deeper understanding of autism.

    ReplyDelete
  6. Marianne, I'm happy for my post to be redistributed, with author credit and a linkback to my blog. Please do so - the more people who have greater insight into the experience of an autism spectrum disorder, the better it is.

    ReplyDelete
  7. I also 'tick many of the boxes for ASD' but I confess I've never heard anyone describe the process of interacting with non ASD people as 'a look up table'.

    That is closer than I've ever come to describing the processes I use to communicate.

    Not that I've tried very hard before to describe it I must admit, since it had the effect of causing many people to look at me oddly when I've tried.

    Most of the time now it is automatic. Unless of course I run across a situation that is new, or different enough that the look up table 'returns a null result'. Then I sometimes react in a way that doesn't mirror the people around me.

    ReplyDelete
  8. An excellent post. I wish I'd read something like it fifteen years ago: it would have dispelled the notion that the rest of humanity presented a united front, and that I was the only one who didn't grasp the layers of metaphor that they wove into their conversations.

    Since then, like you, I've developed my social skills through long practice. (Every time you meet someone new, they assume you're normal. See how long you can fool them. As this time approaches infinity, you're done.) But all this comes at a price - it takes me longer to grasp a new piece of mathematics, my arithmetic is slower, and I find it harder to focus on a single problem to the exclusion of all else. I don't regret what I've done so far, but I'm cautious about forcing myself further into a social mold that I don't naturally fit. So, one additional piece of advice from my experience: as you continue to improve your social skills, make sure you don't neglect those things that make you special.

    ReplyDelete
  9. I definitely appreciate all the sci fi you introduced me to at school- and that you showed me the cd rom encyclopedia entry on sound waves (which seemed really cool and high tech at the time) - I still remembered enough of it to help with year 10 Science the other day. Hiding in the computer labs was a great use of time- especially when you showed me how to hack into the games they hid in the maths drive.

    Sorry I wasn't the best friend in return.

    ReplyDelete
  10. Mishia, you were one of the few people I felt I could talk to, at least some of the time, when my own issues weren't so overwhelming. I really appreciated the friendship you showed me during those years, even though I had difficulty expressing that.

    ReplyDelete
  11. I posted my mostly similar story on my blog today. Other than being dragged to doctors, I was not diagnosed until I was 28. Thanks for speaking out.

    ReplyDelete
  12. This story seems to mirror my childhood fairly accurately except I never ended up in an ICU and no doctors, teachers or councilors have ever suggested a diagnosis.

    I was also pretty angry. In primary school and early high school I used to beat up a *lot* of people.

    Around mid grade 11 (16/17 years old) I calmed down and I think I started to pick up social cues and things have improved for me over the past few years.

    I am still not quite like people my age but that probably has something to do with my interests (F/OSS) and possibly my relationship with my girlfriend. I don't get out much - in fact I have never gone out to clubs or parties as is common with people my age. I would be interested to find the definitive answer of exactly why I am not like like people my age. It might be purely practical/circumstantial or perhaps I have a bit more social development to do.

    ReplyDelete
  13. You could be describing me, except I don't like Science Fiction. I read my dad's Playboys instead. I knew all about stereo systems, Dave Brubeck and Joseph Heller at about nine.

    I wasn't diagnosed til 40. Life was hell.

    ReplyDelete
  14. wow, thank you for posting this. That was me to a T as well. I never had chick friends growing up, and spent all of my time reading (even skipping a few classes to spend more time in the Libarary) and on the internet. I adore Scifi/fantasy stories for their different takes on how humanity as a whole interacts. The whole time "they" were trying to figure out what was "wrong" with me, I dedicated all my time to figuring out what was "wrong" with them! lol

    ReplyDelete
  15. Great post. You remind me of when I was in grade five, reading Asimov's Second Foundation alone in the playground at lunch time. Then going into class to be told by the teacher to put it away so I could read the grade five school 'readers'.

    BTW, your lookup table works well. I wouldn't have picked you as any more or less Aspergers than any other geek I know. :-)

    ReplyDelete
  16. First of all, sorry for the bad english. :)

    At first I thought you wanted to boast about being smarter than everyone because you once were autistic.
    But by further reading, I was sharing with you more and more of the experiences you had in childhood.
    Damn, man... I wanted to write something like this a long ago. But I gave up thinking this would only lead me to more embarrassment. There was no "this child is really special" for me (well, my mom did that, but that's a thing all mothers do to their sons). Once I tried to explain this to anybody, his reaction was "Just stop whining you loser!".

    For me, at child I was playing with everyone, but once we reached 8, my fellows started to act like they were manly and tough and the girls wanted to be like superstars, and some other were popular being the center of attention. I just wanted to remain being a child, playing and being naive about the life. They started to be hostile to me and I couldn't understand this (If I'm being good, why they respond so mean to me? That's a thing you do to a bad guy, not a good one).
    I spent hours and days thinking about it. At last I was desperate so I tried to stop being me and copy what the popular kids do (doing jokes and making everyone laugh). Not only it didn't work, but I was getting the madness what you talk.
    I had the suicidal attitude at 13 too, specially because I felt like I was ripped off with the concept of "love" and "relationship".
    I shared your thought that language must be all literal, with no emotions going along. I chose fantasy for the same reason.

    For now, I'm comfortable too with being a little sideways from the humanity.

    Cheers.

    ReplyDelete
  17. I am astonished and gratified to have had so many comments on this post - and very glad to have made a positive impact.

    Coming up with the right words was challenging, and it is good to see the effort was well-placed.

    ReplyDelete
  18. Thanks for sharing. My eight year old son was recently diagnosed with Asperger syndrome, and so I'm reading as much info as I can - all grist for being the best Dad I can for him.

    ReplyDelete
  19. We're not alone. I was lucky enough to discover IRC when I needed to reach out. It was the first thing to make hu-mon emotion understandable, teaspoon by teaspoon, one /me at a time. That was the early 90s, and now I too am reaching 30 within a year or two. Sufficient hu-mon monitoring point was achieved through a few good friends (Rick, Mike, thanks for the years of support.) even when family would not even admit to a problem's existence.

    Here's another look at IT, courtesy of the BOFH's glasses:
    http://www.theregister.co.uk/2009/02/20/bofh_2009_episode_2/

    As a fellow system admin; I can only say there are days where I seriously wonder about the quality of the hu-mon race these days.

    Having to mimic them to get ahead in this world is the most frustrating thing imaginable.

    ReplyDelete
  20. You deserve a bow and an applause.

    /bow
    /applause

    You surely are strong.

    I've been diagnosed with schizophrenia a few years ago, many up an downs, illusions become reality and It's really tough to keep on going. I feel i know what it's like to be different.

    Hope you're well, and if you can, try mimicking some Superstar (wrongly made and a joke).

    Cheers

    ReplyDelete