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.
(original at Elspeth’s personal blog, reposted with permission)