This season Project Bones will rise awareness and hopefully also a lot of money for disorders on the autism spectrum. I knew that this will most probably be the cause for the season since about June when Heather told me. And since then I was thinking about this testimonial in my head, since that is what Project Bones is about as well – people affected tell their story. Finally last week I got it out of my system and on paper. But an image got stuck, an image of what Asperger feels like to me: Partially blind and gagged and bound by ties that seem whimsical, but that could as well be made from steel. You can find the element of repetition that gives security. And there is loneliness.
Here now, before Project Bones officially kicks off this new season the painting and the testimonial together:
Note to self: Keep this personal. This is supposed to be a testimony of my experiences of life on the spectrum, not a scientific paper. But fact sprouting is so much easier.
So, the spectrum or the autism spectrum: It is the term to describe a range of conditions that are typically characterized by social deficits, communication difficulties, stereotyped or repetitive behaviors and interests, and in some cases cognitive delays. While people diagnosed with Autism, Asperger Syndrome or pervasive developmental disorder – not other specified share some common features, these individuals come in all shades of the spectrum from cases as they are showcased in the Bones episode The Gamer in the Grease, in Rainman or The Mercury Puzzle to well, me. I have Asperger.
Experts say Asperger Syndrome appears to be the result of abnormal migration of embryonic cells during fetal development that affect the final structure and connectivity of the brain. In lay terms, when I was assembled my brain was aberrantly wired. It seems to affect the whole brain, but latest research shows that it has major impact on the processing of facial images. Whereas an average brain filters all incoming visual signals, recognizes pictures of faces and sends this information to a different area of the brain where mimic and gestures are processed so that non-verbal communication including everything concerning feelings and emotions can be understood, my brain does not. I don’t speak human.
That doesn’t mean that I am stupid. I read three alphabets – four if you count the Greek, but I don’t understand Greek except for some medical terms so you don’t. I speak two languages fluently, four more to various degrees. I have lived in three different countries on as many continents – and by lived I don’t just mean an extended vacation. I have a degree in physical therapy and a degree in law with special focus on international law and the law of the European Union. Over the years I have accumulated waste knowledge in various fields from soccer to alchemy so that I can be a real smartass if I want or the encyclopedia, my friends call me. And I work as an artist. The last fact means I’m perpetually broke and I accept the label crazy. But the choice isn’t an expression of stupidity. It keeps me alive.
So, now that we have established what I am not, what am I? I am what I describe for the ease of communication usually as ferociously introverted and shy. Yet, this isn’t supposed to be easy hence I will try to explain my world more profoundly. Bear with me, words aren’t my usual means of communication to express myself.
As I said above, I lack the means to process non-verbal communication. That doesn’t sound too severe at first, but try to go through a day when you are blind to any display of feeling and emotion, when you can’t tell if a person is honest or kidding, interested or annoyed, agitated or threatened. It’s a very confusing, incomprehensible world that leaves you at a constant loss as to how to act or react.
While I grew up, when nobody knew what was wrong with me as Asperger is a relatively recent acknowledged disorder and deviant social behavior wasn’t well accepted in a socialist state, hence it was better not explored further, life was rough. Children are mean and cruel and pick on everyone who is different while being fast to discover how to capitalize weaknesses of others. I could tell you bullying stories that would make your toenails stand up. E.g. one day I walked into our classroom and at least a hundred little patches of paper stuck to the walls, all reading “Aviva ist doff” (Aviva is stupid). At that time we didn’t have copy machines or printers so the guy who did it went through the trouble to write them all by hand. I should have appreciated the time he spent on me and pity him for his poor spelling displayed in front of the whole class. Instead I ran out crying because I couldn’t even start to understand what in the world I had done to this person to deserve such a treatment.
Over the years I have improved my social skills to some degree. In a short interaction you might not even realize that something is wrong, or better different, with me. But for me this means that I need to be constantly concentrated, I need to consciously pick up on everything that is going on around me and with the person I communicate with, and never stop analyzing the situation. Only then I can start to make an educated guess as to what is expected of me and as to what is the reaction to me. That is exhausting and a) more often than not I am still wrong or b) I doubt my own results because I am so often wrong or c) both of the above. So, I try to avoid communication altogether because I fear I might annoy or hurt people without wanting to or be hurt myself. Just because I can’t read feelings doesn’t mean I don’t know them or don’t feel them myself.
Yes, and then there are two things I just can’t do: small talk and flirting. Both depend heavily or almost completely on non-verbal communication. For small talk I have developed a strategy – I either sprout facts where appropriate or tell adventure stories from my past travels. It still makes me kind of socially awkward, but I survive. Flirting however, is kind of a no go. Well, it doesn’t help that I perfected the blending in with the furniture thing in social situations. But I also don’t see a flirt attempt until the guy more or less bodily jumps me. Generally speaking, even the most interested man stops well before this stage thinking that I am just not interested or even worse – rude. That’s one of the hardest parts, next to constantly disappointing friends by withdrawing because of mental exhaustion and feeling thwarted by my own weaknesses, since I do feel lonely a lot and do wish someone would call me his own.
What takes stress from me and makes me feel more at peace are repetitions. I am a kickass Tetris and Bejeweled player and can go on for hours undisturbed while the zombie apocalypse beleaguers the planet. Putting dots and lines of color on a piece of canvas or paper until the whole surface is covered is another cherished repetitive exercise of mine. And my obsession with certain TV shows stems from the same reason. I don’t watch TV, I only watch a small number of shows – Bones, White Collar, The Vampire Diaries (and since very recently Revolution and The Mob Doctor). I watch them repeatedly. That doesn’t require my favorite couple to work out. I trust show runners to not willingly take their stories to a place they don’t belong as it would destroy their own work. Though I love me my Bones revulsion, my Joseph Morgan fix or my Peter, Neal and Mozzy banter, to enjoy watching something over and over again it takes captivating, layered storylines and awesome acting. So, thanks to Hart Hanson, Stephen Nathan, Julie Plec, Kevin Williamson, Jeff Easton, Carla Kettner, Josh Berman and their crews for giving me a way to find the strength to peek out into the world now and then.
There is also a case of clumsiness to be recorded that can be traced back to the mal-wiring. During high-school and beyond I played competitive Basketball and (Beach)Volleyball and it helped just as my pt training did to get a better feel for my body. But I still bump a lot into people, what isn’t exactly helpful when you want to avoid communication.
Would I love to be normal? Every time I’m lonely and long to be held and just let go and let someone else take over for me. Every time I feel sick to the stomach because I approached someone, emailed someone, heck, even tweeted someone and now fear that I annoyed him/er with my sheer presence or hurt him/er by what I said or humiliated me. Every time I kick myself because I was a chicken and did not seize the opportunity to contact someone, said or showed something. Every minute I am me.
But then I realize that my dad was right with something he said very recently to me. He is a no nonsense guy of not that many words, but without any inhibitions when it comes to communication where necessary. So, when I was sitting there one night, brooding about the unfairness of the world and spiraling down to this dark place, he said: Of course you are not normal. But if we hadn’t messed up with these connections in your head, you couldn’t do what you are doing. You wouldn’t be the artist you are. Well, and I sold more pieces already than van Gogh in his whole lifetime – despite all the odds as marketing and selling depend on communicative and social skills that – as shown above – I don’t possess. So, there is still hope.
Speaking of hope: I hope this was personal enough. And this is the end of this testimony.