False ideas about what autism is often arise because of the way that it is always people with extreme autism who are shown in the media. There is no differentiation in the way they are presented and this distorts the picture.
Autism can be paralysing but it can equally well contribute to impressive human achievements.
Autistic people are talented, gifted, with a high degree of concentration and an outstanding memory for facts, figures, diagrams and other useful things. Albert Einstein, Alan Turing and Isaac Newton are all thought to have suffered from various forms of autism: three of the most important scientists the world has ever seen.
The myth of the absence of emotions
Non-autistic people know that we people with autism find it difficult to recognise emotions in other people reliably and intuitively. Many people then draw the conclusion from this that we have no emotions. Because we tend to use gestures and facial expressions as a means of expressing our feelings to a lesser degree, people assume that we are also inwardly unmoved. That impression is deceptive. An example: you smile at an autistic person and that person does not smile back. That is not because we do not like you or have no feelings but because we either do not understand the message that is communicated by the smile or do not know how to react to it appropriately. Many of us try to compensate for the absence of spontaneous reactions with logically controlled actions in order to avoid drawing attention to ourselves – something that requires a great deal of effort.
Over time I have acquired and applied the knowledge about these social codes through years of observing and studying my fellow human beings. Yet even today I still have clumsy conversations each day, am worried about whether I might have offended another person, am confused when others lack precision in what they are saying, almost bump into other people on the street because I cannot judge whether they want to pass me to the left or the right, and suffer constant exhaustion because I have to use an incredible amount of intellectual strength on that in order to understand everything.
It is a myth that autistic people do not feel anything. People with autism frequently experience emotions more intensively and differently from people of their own age because they are over-sensitive or not sensitive enough to noises, touch, taste impressions, smells, light and colours.
No vocabulary for that gut feeling
Many people with autism report that they perceive feelings differently from non-autistic people and also have a different physical feeling. To give an example: anger is often described as “seething with anger”. That may be because a physical sign of the emotion of anger can be a feeling in the stomach. People with autism perceive that full well, the only thing is that they do not associate this changed feeling in the stomach with an emotion. For them it is simply a stomach ache or a form of nausea. Being in love is another such case: for some it is the butterflies in the stomach which they interpret as being in love, for others it might be something which leads them to the wholly unromantic comment “I feel sick!”. Something which everyone would in such a moment describe as a clear rejection.
How can we distinguish whether we have stomach ache or whether it is anxiety or one of the many other “gut feelings”? If we simply describe what we feel, the result is quite a physical and sober description. And precisely that is often experienced and described by the people around us as unfeeling or lacking in emotion. I think that here the appropriate vocabulary is missing that would enable us to express what we undoubtedly feel. But the path to the appropriate word is also missing. A feeling is a very complex process deeply anchored in the human being. It may well be combining all these different pieces of the puzzle into a whole that is difficult for people with autism. They have the pieces of the puzzle, it is just that they cannot combine them into a coherent picture for their environment.
Like an actor with many scripts
Those people with autism who have a special gift of observation learn to be effective “actors”; often they pretend to “fit in” or at least not “stand on the outside”. When we enter a social situation, we immediately scan the people to see how they act. From that we learn to copy their behaviour so that we can fit in. When we are only speaking with a single person we can control that quite well, but when it is a conversation with several people we very quickly feel that we are fighting a losing battle. For people on the autism spectrum to be successful in such situations, they have to become astute social scientists and frequently imitate behaviour which they do not themselves understand.
Over the years, we collect a large number of “scripts” which we can adapt to many situations. We learn scripts to introduce ourselves, for subjects for small talk, to give a pleasant impression. The older and more experienced we become, the better we can do it. But such social acting demands a price over time. In a social respect, that person cannot be themselves. They always have to pretend to be something else! Since we develop a sense of how we feel about ourselves from our relationships with others, this gnaws away at our identity and feeling of self-worth. If we constantly have to pretend, we become tense, angry and depressed. And it is exhausting. Even among those who are good at it, the attempt to copy others demands great mental energy and can only be sustained for a short period.
Escape into silence
Since I often do not succeed assessing and understanding people out of my own intuition, a reliable person at my side whom I know is a great help. Their mood, behaviour and utterances with which I am familiar enable me to recognise how safe or risky it is at that moment to be in a group of people whom I don’t know. Without such a “barometer” at my side every new encounter is incredibly difficult and a battlefield strewn with misunderstandings and confusion.
Without good relationships and intact friendships many things in my life would have happened differently. When I look back to where I had my first experiences with people who were not part of my immediate family, then it was kindergarten and school.
Kindergarten was brief and painful but because of its briefness of no great importance. But I did recognise here already that strangers triggered unpleasant feelings. And I learnt to hide within myself through stillness and silence when necessary.
Little chance without friends
School was different. Here greater expectations had to be fulfilled and I experienced the first years of primary school in a constant state of nervousness. I did not understand my fellow pupils: not how they were and not their games. I thought their jokes were stupid. I was a quiet, reserved child and so there were few or only frugal relationships. But those few I needed so badly that I would have given anything for them. I did not need those few for my own pastime, I was quite happy with my own company for that. I needed those few at my side for my safety, as a barometer which showed me when a situation was playful and when it was serious; what could be said when and when it was better to keep my mouth shut. I sometimes copied all the behavioural habits of each fellow pupil who called herself “my friend” for a while without being able to influence this. To the question which is normally asked in connection with an autism diagnosis, “Did you have friends?”, I truthfully answered “Yes.” Without these companions I would not have survived school.
But the older we became in our class community, the more unclear the social rules became for me. Things never seemed to be quite right. I could never be sure of having understood a remark, a joke, a utterance in the right way. I had the feeling that I would never fit even approximately into the normal pattern. Everyone grew older and yet ever more different. They grew older in things in which I remained a child. They were children in my eyes while I felt very adult and detached. A gap which was widening and which I still experience like that today. There was rarely the opportunity to clear up social confusion and check up on things. Every day was a risk and unpredictable, every day required a new effort. The worst times were breaks or free periods.
I regularly fell ill. During my time in school I collected quite a few absences. The constant effort to deal with the social misunderstandings, the attempts to fit in, the unfamiliar places, the unfamiliar rhythm and no opportunity to withdraw put me in a state of mental overload each day.
If we are not able to communicate and make our needs understood, the body invents strategies which give it the resources it directly needs to keep going. And so it happened that for a long time, over months, it was impossible for me to attend school. At many times in my life I would have wished for nothing more than reliable support or a reliable relationship. They would have made things easier and with them I would have had a chance to understand some occurrences when there was social confusion and possibly to avoid them.
I seek to master those things which I cannot understand intuitively. If I have a companion, I ask them about things I do not understand. If I don’t have a companion, I simply explain the many confusing events, impenetrable utterances, experiences and observations of social human interaction for myself. Both things carry risk. Is it possible unconditionally to trust a companion, a person whose guidance one is forced to follow for lack of any alternative? Are their explanations generally valid and do they accord with moral and social standards? Of course not, experience repeatedly taught me.
Just a bit of understanding
Autistic people have an above-average IQ and are normally very successful in the academic sphere. If they are given help, support, love, affection and the necessary understanding, they will not have to face a life full of sadness, depression and suicidal thoughts. We are able to enter into relationships, live a happy life and make an important contribution to society.
If we want to help future generations to solve the problems, society needs more knowledge about and understanding of autism so that autistic people can be given the help they need. We have to prompt a greater understanding of this disorder in all spheres of society from healthcare through social welfare to culture and the media. Autistic people just need a bit of understanding. We are not emotionless robots. We are human beings.
About the author: Emily Rose (18) attends the Windrath Valley School in Velbert and will this year obtain her qualification for admission to technical college. She then wants to go on to the school’s vocational college in the subjects of health and education.