Labels are everywhere; they are things which cannot be avoided. Some are useful, some are a hindrance, but they all serve a purpose. The problem with this is that when they’re taken out of context, or misinterpreted, they become misleading. Autistic people are said to struggle with weak central coherence (the inability to put smaller chunks of information into a different/abstract whole in order to see the bigger picture), and I feel that the use of inconsistent language – by labelling things incoherently – is a contributing factor to this.
What’s in a name?
The first label assigned to me was my name, Alexander, although I prefer Alex. Alex is derived from the Latinized form of the Greek name Αλεξανδρος (Alexandros), which means defender or helper of man (Campbell, 2015). I’ve known this since my youth, and it’s a burden when taken literally. I try to be helpful, but defending the human race is far beyond my capabilities!
Alexander had been chosen for me because it was my paternal grandmother’s maiden name, before I entered the world during an early morning thunderstorm in the summer of 1984. When learning to write I struggled to spell my name, which is why it got shortened. To this day when I hear myself referred to as Alexander, it usually means I’m being reprimanded for something. Fortunately that doesn’t happen very often, especially for a just cause.
As I’ve grown, I’ve learnt that what I think about myself is not necessarily representative of how the outside world views me. If I was limited to three words, I would I say that I’m dysthymic, introspective, and uncertain. Let’s go a little deeper into that.
Although replaced by persistent depressive disorder in the DSM-V, I would still classify myself as dysthymic, which means that I have been depressed for a least two years but not severely enough for it to be considered “chronic”. For as long as I can remember I’ve felt socially isolated, even when I’m amongst friends. I’m used to feeling tired, and everything I do seems to require a lot of effort to the point where I feel that I’m giving more than I’m receiving. Things have improved since being diagnosed with Asperger’s, but there’s always room for improvement.
I believe that I’m introspective due to being dysthymic. I have always felt uncomfortable in my own skin, to the point where I don’t like being touched and I feel persistently on edge – both physically and psychologically.
Physical contact is a bit like receiving a static shock from an ant herd which travels from the point of contact towards my central nervous system; I can tolerate it, but it’s distinctly unpleasant. I won’t usually shake hands with anyone, and I only hug close friends, family, or those that I feel have earnt one. Strangely enough I wasn’t aware of this until I had turned 25, which might suggest that I struggle with alexithymia, too.
Psychologically, my sensory profile takes a lot of processing power. There’s usually a time-lag, depending on the significance of an event, between the time it transpires and the time where I feel like I’ve understood what’s happened. An important part of that is being able to process how I feel (other than tired). If I’m feeling too anxious/stressed, then it makes sense for me to rest for a couple of days. When the sense that I should be doing something intangible returns, something which is just beyond my comprehension, then I know that I’m ready to return to the real world, because that’s “normal” for me. As a consequence, I’m always trying to process how I’m feeling.
I live a solipsistic existence, i.e. one where the only thing that I know to exist is myself. Although I’ve gotten better at identifying others’ intentions, I still have to think about it (cognitive empathy) and adjust my behaviour accordingly (affective empathy), which often leads to mistakes. I try to be explicit in my expectations of others in the hope that they will be able to reciprocate (mirroring). However, if I’m in unfamiliar environments and/or with strangers then this isn’t possible. In those situations, their communication can be little more than nominal rhetoric to me; something that I might take at face value, when their intentions are otherwise. For example, someone recently said that I didn’t look autistic. That may be the case since there is no definitive autistic look, but I’m still not sure how to respond without sounding defensive; I said to this person that all autistic people are different, but there might be a better explanation. Upon reflection this comment, together with others such as “I know someone who’s autistic”, are little more than arbitrary non sequiturs which do little to stimulate conversation. My initial cognitions on these phrases are caustic, and wouldn’t necessarily be of benefit to anyone if spoken. In my head, the first conversation may go something like this:
Other person: “You don’t look autistic.”
Me: “Well you didn’t look stupid, but then you opened your mouth.”
The second one would invoke a slightly more facetious reaction:
Other person: “I know someone who’s autistic.”
Me: “Congratulations, take five points for Hufflepuff. Let’s skips Potions and drink Firewhisky in the Shrieking Shack.”
It’s as a result of these frequent misunderstandings that I prefer my own company for the most part; it’s less stressful, and I know what to expect, more or less. That’s not to say that I don’t feel lonely.
Another thing that mystifies me is the art of hermeneutics; the knowledge of interpretation, especially in literature. It’s for this reason that I don’t usually take things as given, simply because I don’t know if I can trust the authors/interpreters of the written word. Consequently I prefer to read source material before I make any decisions.
If I had to live my life by one rule, it would be plan for the worst, and hope for the best. This is another way of avoiding disappointment, although that’s not to say that I plan to fail; far from it. The reason I plan is to mitigate potential problems before they arise.
In nosological terms, a label is defined as “a classifying phrase or name applied to a person or thing, especially one that is inaccurate or restrictive” (Oxford University Press, 2015). I believe that this is how a lot of people view autism; as something to be dismissed, eliminated or cured, rather than accepted and understood.
Unfortunately, this belief holds sway with a lot of the people whom have the ability to help us autistics. They read articles, biographies, blogs, forums, journals, social media feeds, and textbooks which are aimed at selling them an idea based upon fear (usually the need for more research and/or money, or urging them to sell a product/service). Subsequently they may use these sources of information out of context as the basis for their “expert” opinion, which isn’t usually representative of the way autistic people think. They say that they realise that autism affects everyone differently, but still try to categorise us and put us into neat little boxes instead of giving us tailored support as individuals. Ironically their views are very rigid and systemic, which are supposed to be autistic traits! If things really were that simple then we wouldn’t need any support.