My Letter to the Newspaper Autistics are not Pychopaths

Recently I wrote a letter to the newspaper. I felt compelled to write because I needed to correct some statements by a regular writer to the newspaper's opinion page, had made about people with autism/Asperger's. The lady in question often wrote quite nice articles about the helpful practice of mindfulness, which actually I liked to read, however, this time she wrote about people with autism and made the comparison of autism to psychopaths , ' the neurologically disordered' she called us.  Here is my letter:



The Broken- Hearted
 Machine - charcoal sketch by S. Tihanyi
(all copyrights are held by the artist)

An Autistic’s Reply to Mindful Comments by (Name Protected)

"Please allow me a little space in your newspaper to respond to some of the recent comments made by (name protected), about people on the autism spectrum. I give the lady the benefit of the doubt and believe she is compassionate and well-meaning but not aware that some of the facts she, holds are not totally accurate and that their proliferation creates needless fear, stereotyping, avoidance and bullying for autistic people by society. This can cause them shame, lack of self-esteem and depression. I do not intend to bash the lady, but as a high functioning autistic, feel I must set the truth straight, I am also backed up by facts from the very experts she quoted in her article. She states that autistic people, just like everyone else, can have low, medium or high IQ’s and the deficits and gains of both for IQ runs parallel.  Very good. Marriage with a partner on the spectrum can be work and a lot of learning, for both. Yes of course this is correct. The problem is not about their lack of capacity, will or lack of love or caring, its communication. I felt the article was fair but parts were vague and open to misunderstanding, especially the part about the perceived autistic lack of empathy and the comparison to psychopathy. This part troubled me a lot.

I quote the article: “The lack of empathy comes with some neurological disorders, not just autism- the psychopath will derive some pleasure from your pain, but the autistic will wonder what you are complaining about”, Their “(empathy) “needs to be worked on in their youth so that they can learn to reciprocate even if it’s just learnt behavior and does not come from the heart”.

I take issue with this line as it could give the reader the impression that autistics are ingenuous, false, heartless or lacking the capacity for feelings. This terrible perspective has been used to justified all sorts of bullying, discrimination and abuse upon autistic children and adults, whether intentional not, because people believe we don’t have feelings like others. It’s wrong. This misconception came about from early clinical research over the use of the clinical word ‘empathy’. It has been noted by autism experts and attempts have been made to address it over the years but the damage from a misconception around the clinical word “empathy” still lingers, even among some health professionals.

‘Empathy has nothing do to with how the person feels, i.e. whether they feel bad for someone when they are hurting (as in sympathy), love or care about them (unconditional love and altruism). It has to do with understanding the emotional state of another person (cognitive), and responding appropriately.  The ability to recognize the emotional state in another person relies on good communication. Autistics and non-autistics communicate differently. As someone on the autistic spectrum, I can tell you that my difficulties in social situations, have absolutely nothing to do with empathy – chosen or automatic. I quote from an online blog: "When I know someone else is suffering, I can’t help but feel empathy for them. It hurts me inside sometimes so intensely, I am very sensitive, if anything, often, I seem to have more empathy than the average person. Consider this please, if someone told you, in Russian, “I’m sad because my mother died yesterday”, you’ll only feel empathy for their sadness if you understand Russian. If you don’t know Russian, his statement will have no meaning to you and you won’t realize he’s talking about a sad event. For autistic people, nonverbal communication is like a foreign language, and we often don’t understand what it’s conveying. If I don’t realize someone is sad, I won’t show empathy for their sadness. But as soon as they tell me, in a way I understand, I’m sympathetic and feel for them, just as anyone else would. (Whether I’ll know what to do to comfort them is another matter)"
Certainly most parents of autistic kids object strongly to the portrayal of autistics as unfeeling, unloving, and unlovable as well. “Empathy" could be teased into two parts: 1) Awareness-empathy, i.e awareness of other's emotions and well-being, and 2) Caring-empathy, i.e. caring about other people's emotions and well-being. I also quote expert Dr Tony Attwood, who states:

 “I think it is important to explain the misinterpretation of other people’s suggestions of a lack of empathy for people with Asperger’s syndrome. I think there are two factors here, one is that the person with Asperger’s syndrome may not be able to read the subtle signals in another person in facial expression, body language and gesture that would normally be associated with a response of compassion or affection. Thus, if the person with Asperger’s syndrome does not respond with a hug or words of compassion the neurotypical defaults to paranoia and then assumes that the person with Asperger’s syndrome lacks care and empathy. It is not that the person lacks care and empathy it is more that they didn’t/could'nt read the signals or body language. Once the signals are recognized, the person with Asperger’s syndrome can be remarkably kind and supportive.

One of autisms biggest researchers, Dr Simon Baron -Cohen has also attempted to address this misconception that people have, of autism’s lack of empathy being the same as the psychopathic/sociopathic lack of empathy: He says, “I want to return to the subject but with more information on WHY there is a misunderstanding about autistic and sociopathic persons and why popular culture tends to screw up portrayals of both. The key difference seems to be that in psychopaths the 'cognitive' component of empathy is intact but the 'affective' component is not. In autism, both components may be impaired, or just the cognitive component. But their strong systemizing leads them, through powerful logic, to develop a moral code based on 'fairness' and 'justice'. Psychopaths lack the moral compass that most people develop using their empathy, and lack the moral compass that people with autism develop using their strong systemizing. People with autism spectrum conditions often end up as 'super-moral', developing a set of rules they expect people to live up to consistently (such as honesty, fairness, duty), arriving at the conclusion that one should 'treat others as you would have others treat you' because it is the most logical approach. He also adds: In my experience whilst even adults with Asperger Syndrome may have difficulties figuring out why someone else’s remark was considered funny, or why their own remark was considered rude, or may judge others as liars when they simply are inconsistent in not doing what they said they would do, they may nevertheless have a highly developed emotional empathy, caring about how someone feels and not wanting to hurt them. If they do hurt them, it is often unintentional and they feel mortified when it is pointed out, and want to rectify this. In this respect, they do have some of the components of empathy.

Many people with autism also form very strong emotional relationships with their pets, worrying about their welfare, and find that whilst they struggle to ‘read’ human behavior and human intentions, they can read the arguably more predictable behavior of a pet. Finally, as mentioned earlier, the difficulties with the cognitive element of empathy by no means leave people with autism devoid of a moral code, and their strong systemizing can mean that they often end up with a more principled moral code than many people without autism. Thank you."

The Spaces in Between- Aspergers, Art & Central Coherence




Detail-from 'A Mote in gods eye'-by Stephanie Tihanyi
(all copyright held by the artist)

The Spaces in Between, 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. 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 that other people can relate to it as it makes us 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 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 fractural 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 am 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 flood 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.

 

 What I do, is start by making random marks with brush, plastic bag, or sponge: anything that can make marks with paint. This is not unlike  Leonardo's technique , which encouraged the viewer to search for meaning in chaos,  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 no more information. Again my eye will be caught by another patch to work on somewhere else, and then another.

Painting by Stephanie Tihanyi (all copyright held by the artist)

                    marks in sepia on gesso board - Stephanie Tihanyi

These are random parts have no association with each other and I wonder how the heck can I make a coherent painting for myself, let alone anyone else. 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 reveled 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 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.

Detail-from 'A Mote in gods eye'-by Stephanie Tihanyi

(all copyrights held by the artist)

 

 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.   

Asperger's Growing Up

                           Asperger's Growing Up

The Ruby Horse- oil painting by Stephanie Tihanyi (copyright held by artist)

In my impatience to be born, lol, I arrived two months too early and weighed only 1lb 8 ounces, covered all over in ‘lango’ a fine hair, ‘less than a bag of sugar and looking like a spider monkey’, remarked my mother, cupping her hands together.

Immediately following the birth, I was rushed to another hospital miles away, to an incubator, to assist breathing, because there was not one in my home town. This must of stressed my mother because she already had my 10 month old sister to look after and at that time my parents were very struggling financially.

At 2, I was hospitalized briefly for an eye operation, but because I raised pure screaming hell on the kids ward they sent me home early. At 5, I absolutely refused to enter my first school, because it looked too much like a hospital. As far as I was concerned, hospital is where they abandon you. And I was not going in there. Eventually with my mothers coaxing I relented and actually enjoyed it.
 

Nothing else noteworthy stood out from my very early childhood behavior (pre-school) and I remember it as quite peaceful and pleasant, except I did spook my mother out with occasional odd quirks.. She thought I saw ghosts and it gave her goosebumps because she said I would stare intently at the wall, cupboard, door or window and make smiling and waving gestures, as if someone was there, I, of course I don’t remember a thing. 
 
Something that was significant in indicating 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, is that 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 is it that is going on?. My mother said I seemed genuinely confused as to the interactions taking place. 
A hallmark of children with Aspergers is that they do not ‘read'  (http://www.helpmehelpmychild.com/?page_id=222d’)  faces and can’t tell when someone is becoming annoyed or angry, although they are able to recognize extremes of emotion, such as very happy/angry/sad.
 Later on, this disability of mine, would lead me into big trouble. Because neurotypically brained people, assume all others react uniformly and they have a lack of imagination that there maybe differing cognitive styles. My odd reactions were deemed as defiant and willful to my authoritarian father. It was  like a red flag to his bullish aggression. This, I believe lead me to be beaten by him the most severely, if not the only one, in later years. I simply failed to see the visual red flags and learn to shut up like my siblings. I remember my step mother saying "I don't believe you cant see your father getting angry, you know what he is like, 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, never knowing when shit was going to happen made life and people seem very unpredictable.
.

 My first difficulties of Asperger’s syndrome, arose in early primary school. I had no problems prior, 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, 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 teachers frustration but I had no way to express myself. They would say, “ why don’t they want to play with you?” and I would feel ashamed, it was like they was 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 came 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 kind Hindu, was watching and 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 Asperger's. I was artistic, I held onto that, it 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 problems 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 to 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. Such childhood experiences such as these, are very emotionally painful among those of us with Asperger's and its not unusual for us to carry these types of emotional defenses into our adulthood, as Lynne Soraya, writing on Asperger's Diary explains here, they can color our lifelong relationships with people.

 

My tendency to take statements made by others literally first became apparent to others around the 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 got there. Somehow I didn’t get it. I remember one child dramatically suggesting ‘a murder’ and the teacher said '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 all  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 an ‘imaginative’ child. That became the reason for anything that was different about me. But how could I be so imaginative in my drawing, yet lack the social imagination of what others was thinking? Theory of mind. Here is a great little You Tube vid explaining it.

Aspergers Decoded - Autism Spectrum Disorder and Theory of Mind

 Nobody knew it was more than vivid imagination that also caused my difficulties in understanding common words and phrases others used like, ‘hardships’, ‘clothes lines’, ‘at the end of the day’. Such phrased were confusing to me and I got ribbed at quite a bit, 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? Mother was putting washing on a ‘clothes’-lion?. What does that mean?, ‘a clothes lion? a lion made of clothes?...or a lion wearing clothes...???’. I often got told ‘you’re so daft sometimes’ or ‘you’re just messing me around, acting like you don’t understand. The good news is a keen memory for words and puns can be developed over the years and into adulthood, and put to creative use in a visual way, comic strip conversations, and other concrete, or unusual visual art approaches. I believe that not being able to express myself verbally, coupled with high sensitivity, lead me to being an artist.    

Finding the Rainbow (part 1)




Sanctuary of Kali - S. Tihanyi
(copyright held by artist)

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 with the social world in the way I have and that I am actually not alone.

Nearly a year ago I discovered from a psychiatrist I have what is known as Asperger’s syndrome. Some view it as a form of high functioning autism, however on the eve of my discovery, I find it has been, (with much controversy) removed from the DMS 5 and is now seen as a mild form of autism.(ASD). Learning I have this syndrome has been a huge help in dispelling my lifelong confusion, of why other people have an 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, and other things. 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.

The knowledge and research into the syndrome is most recent, so I cannot fault any childhood pediatrician ‘if I had ever seen any’ in my youth for not diagnosing me or my parents for not supporting me more, though in light of their general neglect, I don’t think it would have made much of a difference anyway.

Aspergers was in the past thought to be a male only disorder but this has been dispelled in recent years. Today treatments are focused mostly upon the young, and concentrate on improving communication. The majority of adults with Asperger’s, go undiagnosed, the majority of adult women with Asperger’s, even more unlikely to be diagnosed because they present differently to males and can mask their differences better. Tony Attwood: Girls and women who have Asperger’s syndrome
http://www.tonyattwood.com.au/index.php?option=com_content&view=article&id=917&Itemid=720

People with AS have problems with social skills and communication, obsessive or narrow interests, sensory overload and motor skills. this often leads to problems with depression, frustration and anxiety. Many are highly sensitive. 

People with Aspergers have problems connecting to others because they communicate differently than most other people and their brains process things differently. They do not do social chit chat very well and there is reason for this. We have an inability to read non verbal body language, being unable to perceive or use it, we also do not display much body language ourselves in our communication. Our voices can be flat or monotone and our faces may seem emotionless, leading others to think we lack emotions or empathy. When we are upset, even if in great pain, we state simply ‘I am feeling really sad or hurt’ but have little visual expression, leading others to dismiss our distress as mild, or false and making us feel others don’t care. 

 Also, 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 am in turn am hurt, (little outward expression) because I don’t know what I did wrong. This is how I fail at making friends, especially among women. I have very few female friends.

I am also inapt at sarcasm. People with Aspergers are known to take things people say quite literally. Some of this again is body language but some is that we use mostly logic in communication and thinking. Even among females, we have what is known as a ‘the male brain’. We may have problems understanding that people often communicate by not saying what they mean. This just does not seem to make any sense to us. When making sarcasm, others display subtle cues indicating it’s a joke., but of course we miss it, making us look totally stupid or gullible. One can often find oneself being taken advantage of by manipulative or dishonest people if rushed into decisions.

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 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.
 

Aspergers people can have problems with co ordination. I used to have this but have found great progress can be made by learning co ordination manually, so to say. What does not come naturally can be learnt. 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 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. Movement therapy is very much promoted in the therapy of autistic children. Many such children improve their motor co ordination 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 non verbal, is of great benefit to ones emotional well being.