Autism Unveiled Week 6
Sometimes in life we discover something that changes us and our view of ourselves. To discover that, after so many years of inner confusion, doubt and incomprehension, that there is actually a quantified and measurable reason for why I have struggled to make sense of the social world in the way I have and I am actually not alone.
I have what is known as Asperger’s syndrome, now known as Autism Spectrum or HFA. Learning I have this syndrome has been a huge help in dispelling my lifelong confusion of why other people have the easy ability to do things I cannot, like have an ease and flow in communication between each other, that is often a mystery to me. How I either make people laugh or piss them off, without even ever understanding how; or how I am able to focus on a subject for such long periods of time without getting tired. People that do get to know me, find me smart and at the same time socially clueless. While others totally misunderstand me or even dislike me because they are phobic of differences.
When I was a young child in the 1960’s I was never diagnosed, even when I had a cousin diagnosed with the disorder. The majority of adults with HFA’s go undiagnosed. The majority of adult women with HFA are even more unlikely to be diagnosed because we present differently than males and can hide our differences better. Something in my youth that was significant in indicating I had AS was that I remember my mother noting that instead of crying, whining, acting shamed or protesting like other siblings or cousins, when being angrily reprimanded by either parents, I would become fixed and immobile. I would stand and stare blankly or inquiringly at the reprimanding parent, as if to say, ‘what are you talking about?, are you talking to me?, What’s going on?. My mother said I seemed genuinely confused as to the interactions taking place.
In primary school I had no problems because I had my older sister as my one dear friend. But when we were separated in middle primary school, I begun to experience problems and anxiety and forming social relationships. I was very confused and fell into an absorbed sadness that I could not express. I could not understand why the other kids in the playground would not play with me. I felt afraid, hurt and rejected. I remember teachers taking me in hand and going over to groups of kids and gently trying to intercede on my behalf and get the other kids to let me join in their play. They still ran away. I really did not understand it. I was quite aware of and felt the teacher’s frustration but I had no way to express myself. They would ask “Why don’t they want to play with you?” and I would feel ashamed. It was as if they were asking me if there was anything I had done wrong. After a while they did not ask. To avoid the feeling of shame or be viewed as bad in some way, I began to hide on the stairwells during recess and pretend to do homework or read a book. I looked forward to meeting my dear sister at the gate so we could walk home together.
It was the first time I became aware of being different from others and I did not like it. Once when my sister was away from school, due to sickness, I walked home alone. So absorbed was I, I walked straight into a lamppost, cutting my eyebrow, blinding my eye with blood. I was very fortunate. It did not go unseen. An Indian man, a Hindu, took me home to his wife who cleaned my face and put a bandage on my head.
After the man walked me all the way home to my mother. My reputation of being a dreamer was first established, I was from then on an imaginative child with her head in the clouds … in a world of her own. No one considered that I maybe mildly autistic. In 1968, only boys, not girls, had Aspergers. I was artistic, I held onto that. Art gave me a positive identity.
I knew the other kids were not really bad. I also knew I was not doing anything bad that I could perceive, yet I could not understand this mystery. The lack of understanding was painful. My need for an answer lead me to create a theory. Somehow I came to reason, it was my social neediness for others, that put others off (others, meaning other children . . . adults I had no problem with). In an attempt to understand and control the situation, I figured, this is what made people withdraw. At last! I had an answer that gave me a sense of meaning and understanding. If I did not show too much social neediness, no matter how lonely I felt, I would not get rejected and no one would be at fault. If I showed I had a need or yearning for friends I risked being despised by them.
My tendency to take statements by others literally first became apparent to others around age 10. My primary school English teacher prepared an imaginative writing project for the class. He placed a red ink splattered shirt by the open class room window with a compass, a crowbar and a box of candy. It was very dramatic to say the least. For our project we were to write a story about how these things might have got there. Somehow I didn’t get it. I remember one child dramatically suggesting ‘a murder’ and the teacher replied ‘good idea.’ Well, that was it. Done deal. I went home and told my mother there had been a murder at the school. I told her I was extra scared because I was worried the murderer may return. She rang the school very alarmed and the next day the teacher took me aside and told me it was just make-believe. Back then of course autism was not ever looked at in girls. I was just that over-imaginative child. That became the catchphrase used for anything that was different about me.
Nobody knew it was more than a vivid imagination that caused my difficulties in understanding common words and phrases others used like hardships, clothes lines and at the end of the day. Such phrases were confusing to me as a child even when it was explained again and again. I just couldn’t get it. Your hard-ships?, Are not all ships hard? is that opposed to Soft-ships which would sink, right? that’s not logical, Duh? The good news is we have a keen memory file for words and puns. These can be developed over the years and into adulthood, and put to creative use in a visual way, comic strip. I believe that not being able to express myself verbally, coupled with high sensitivity, lead me to become an artist.
During childhood my disabilities got me into big trouble. Because neurotypically-brained people assume all others react uniformly and they have a lack of imagination for the fact that there may be differing cognitive styles. My odd reactions were deemed as defiant and willful to my very authoritarian father and stepmother. When he was angry it was like a red flag to his aggression. This I believe lead me to be beaten by him the most severely in the family, if not the only one. I simply failed to see the visual red flags and learn to shut up and be quiet, like my siblings. I remember my stepmother saying “I just don’t believe you can’t see your father getting angry, you know what he is like, can’t you see he is about to blow? I think you ask for it!” To me those punishments were like a bolt out of the blue, with no warning signs. Getting hit was bad enough, but never knowing when it was going to happen made life miserable and unpredictable. In the media you hear about how difficult autistic children are but you do not hear about the abuse such children can suffer. Sadly I developed what later was known as PTSD. By 16 I would find myself twitching or ducking when a stranger moved a hand to grasp a handrail on the bus.
I communicated differently than most other people and process things differently. I could not do social chit chat very well but like many autistic women as the years passed have learned to script well enough to pass. But sometimes this has its limits. For instance, I may have a friend who is upset or angry, but says everything is good but somehow displays non-verbally, that she is not. To her it should be clear. But to me, I am only reading the words coming out of her mouth as everything else is blank and I respond in a cheerful manner. She then thinks I am being cold, heartless or just a bitch. I in turn am hurt and confused because I don’t know what I did wrong. What’s more, its hard for me to know the ways to right this misunderstanding because when my inability to read body language is something non autistics feel is totally incomprehensible and they default to a stance of paranoia. This is why I am shy of making many friends, especially among women. I have only a few female friends.
I am also inept at sarcasm I am known to take things people say quite literally. We may have problems understanding that people often communicate by not saying what they mean. When making sarcasm, others display subtle cues indicating it’s a joke. But of course we miss it, making us look totally stupid or uncooperative. One can often find oneself being taken advantage of by manipulative or dishonest people if rushed into decisions, which is why we should never reach agreements on a nod or a handshake but get it in writing.
Interacting in a social group can be full of anxiety, a terrible minefield of potential miscommunication and misunderstandings, one never knows what the outcome of a social interaction will be, so I tend to hold back, making some people think I am snotty or aloof. Will I offend someone?, will I be laughed at, will I be rejected, will I get used? Due to sensory overload, it takes me a while to process information and I may reply eager to participate and be a part of the social conversation, only to have everyone groan that we’re done talking about that ages ago. Sometimes I have real problems with verbal communication. It’s so hard; I cannot form the words and sentences fluidly, so I have to rely on acting out well-rehearsed lines and phrases like an actor. Sometimes I can do this very well but sometimes I annoy people, who have heard them too many times and succeed in making myself appear boring or dull. It can be so frustrating communicating, often its easier to just withdraw altogether. But it’s not possible or an option I can accept. If I want to reach any of my goals in the world, I just have to keep trying, no matter the anxiety and the mistakes. Progress can only be made that way.
They say Asperger’s people can have problems with coordination. I used to have this but have found great progress can be made by learning to improve my coordination. What does not come naturally can be learnt. I have a personal belief that many of the stims of autistics are movements looking for development. This is true in all things. I used to feel very uncomfortable in my body. My gait was not so graceful and when I was young I got the nick name of ‘horse’ because of my plodding gait. I got plenty of scars from falls I made as a kid. As an adult practicing aikido, helped me to connect with the motor-co ordinations. Somehow in the course of the repetitive training, it seemed I downloaded a new script of how to move, that seemed to facilitate the growth of new neural networking pathways in my brain. It was wonderful, now I can spin and twirl, dance and have confidence in all my movements, on and off the mat. It was such a boost to my self-esteem. This proves although something was be known to be so, it does not have to remain so. Movement therapy is very much promoted in the therapy of autistic children. Many such children improve their motor coordination skills in practicing a martial art like Aikido. Also, engaging in a mutual, friendly, honest social activity with others, that does not rely on social chit chat and that’s primarily nonverbal, is of great benefit to one’s emotional well being.
Art has been my savior. I believe it saved my sanity and my life and helped find my own way to grow.
‘The Spaces in Between,’ from my blog is a piece I wrote about how I use my art to help me express, a personal experience or a story, an idea, or a conversation. When I start, I have no comprehension of how it fits into the general ‘big picture’ of things in order that other people can relate to it. It’s important to me that other people can relate to it as it makes me feel human and connected. There is a struggle to find somewhere to begin, when you have no outline or basic framework, you don’t even know by what name the general topic is called and it’s hard to even verbalize it if you did. However you do know, you have a very, very real need, obsession or passion, if you like, to understand and communicate something experience that is real. It’s a mystery, this puzzle, yes; it’s like a jigsaw puzzle. This is the role of art.
Through painting I have found a way to gather these pieces together and build my ‘big picture, from the bottom up. While working, I can only see one piece at a time, they are not in order and some of them may be missing. The act of painting them, holds them fixed and recorded, so they stay present when an additional piece (of information), comes along and they do not fade. Let me explain.
Every artist has their own way of making their paintings. They start in a certain way and finish in a certain way. The most widely practiced and understood method is what is taught in art schools. The artist consciously chooses an idea, emotion or concept, with a rough image in their mind beforehand. They have a global idea of the subject and a sort of image of how it will look and its contents. This is what is called ‘big picture thinking.’ The general rule is to first plan out a rough layout or a composition. Then add tonal and color values and as work progresses, only adding the details in the final stages, if needed. This is the most usual route in painting and also with any endeavor one wants to achieve in life. Nature has designed most people’s brains to work in this way. The ability to see the ‘big picture,’ emotionally and socially is a cognitive style successfully used by the majority of the population, it’s known as central coherence. It’s similar to someone looking at the planet earth, first seeing it’s a round ball, with oceans, clouds and land-masses, to leaves on trees, fishes in the ocean and then to tiny microbes. However there is a small minority, who because of their neurology, tend to think in a different way. They are detail-thinkers. They have what is known as weak central coherence. On one hand it benefits sustained focus for creativity and discovery but on the minus side it weakens social and emotional communication and understanding. People, like me, are fascinated with detail, even the details within the details have got details on them, its like a fractal heaven. I am a detail-thinker with this cognitive style. I believe this is reflected in the way I create my artwork. I had no formal art school training, but even if I had, it would have made no difference, as I’m sure I would of gotten frustrated with the teaching style.
So when I start a new work, I have a strong feeling of wanting to express something but cannot get a general idea of what. Lots of bits of info floods in but I don’t know how they fit together nor can I hold them together. I cannot verbalize it either it’s just too much and too overwhelming. One doesn’t just open the door, a crack, of the submersible undersea at 10,000 meters and let a little bit of water in, the outside pressure is too great.
I start by making random marks with brush, plastic bag, or sponge: anything that can make marks with paint. This is Leonardo’s technique, which he encouraged his students to search for meaning in chaos, something I am familiar with, lol. Now I feel less anxious because, now there is stuff on there (the canvas). I may not know what it is, but it’s pegged down. Something in the random markings, will look like something and catch my attention. I will work detailing it, a great deal. Then I will leave it when it can give me no more information. Again my eye will be caught by another patch to work on somewhere else, on the canvas and so on.
These random parts have no association with each other and I wonder how the heck can I make a coherent whole. But I have been here before and learnt to just press on. As multiple images around the canvas are worked on randomly, something curious and magical seems to happen in the spaces in between. There begins to appear connections that have never been revealed before. It’s now, I really begin to enjoy working on the painting. Something I had not been able to do before now seems to be happening, almost without any struggle from me. As connections across the painting blend, fusion takes place and new concepts and relationships are created. The result is unexpected but carries the excitement of discovery. Sometimes I imagine in my mind, this process encourages the neuronal branches to make new pathways in my brain. It certainly feels very therapeutic. It makes me feel alive and connected. This victory over previous chaos and the excitement of discovery keeps me painting again and again.
I have found my own way to see the big picture and it feels good. Isn’t this what we all want, to give meaning to our experiences and be able to place them in a broader context of understanding. Everyone wants to possess a perception of what is life and reality. My way may be longer and take more time, but it is unique, original and it does make sense. But I am not done yet. The finished work affords me an understanding that only the emotional part of me understands. I look at the work, it makes sense, it has meaning, but I cannot say why it feels right. In order to satisfy my need to be understood by others and feel connection with the other, I have to explain my work. Further understanding is achieved when I work at verbally exploring my creation. I need to write about it. Before, the emotional part of me has been satisfied by this expression, now the intellect needs to understand, (also it’s easier for me to communicate on an intellectual level). I guess it’s the two parts (emotional, intellectual), collaborating on a project, for the mutual benefit of the whole, that makes the experience of creating art so beautiful for me. I think whatever your neurology and cognitive style, you are better doing what you are good at, rather than something you are not.
In 2012 I was honored one of my paintings was chosen to grace the cover of an autism book. The book was published by Jessica Kingsley Publishers called Been There, Done That, Now Try This (An Aspies guide to life on Earth) A self-help book co-written by world leading Asperger’s (Autism Spectrum Disorders) expert, Dr. Tony Attwood, Craig R Evans and Anita Lesko.
All artwork featured in the book was done by spectrum artists. My art called “The Visitation,” is an expression of the struggle and effort it takes of going through the process of transforming, from a difficult past, to perceiving and building a new future, new hopes, possibilities of greater happiness and life fulfillment. I did this painting at a particularly difficult time in my life, when I felt very much in an emotional crisis. It was an emotional therapy for me, as is much of my artwork. It helped me to express feelings and thoughts I did not have words for, or even concepts to clothe them on. In the painting, the angel/child is balanced at the intersection of a corner of a building. To one side of the angel, is on fire, cracked and broken and in pain, the other side is whole, clear and beautifully multi-colored by the angel’s one-wing. At the bottom of the painting, sits a cat on the door step, (we used to have a cat in our family home), like a friend, who is waiting to be let in. Above on the roof top, startled birds rise up into a deep blue sky with a crescent moon, as if showing the way to liberation.
In 2014, I also was able to travel to Austria and Italy to learn the old master painting techniques of ‘mische technique’. This is my first official education I have ever done in painting, many people are very surprised to find I am totally self-taught. To me it’s not unusual at all and feels very natural.
Stephanie Tihanyi, The Caribbean
Stephanie is part of Autism Unveiled Project culminating on April 2, 2015, World Autism Awareness Day.