Speech in Barcelona 14 April 2011

Speech in front of teacher/psychology students, Universitat R. Llull, campus Tamarita, Barcelona
14th April 2011

This speech was in front of a group of teachers who are studying to specialise in dealing with children with psychological issues. The speech was conducted with a Question (Q) and Answer (A) scenario.

Q: How was your learning as a child? Did you have any learning difficulties?

A: I had no learning difficulties at all with the study material itself. Tests, essays, exams etc usually went smoothly. I learnt to write and read at a very early age. There were no such problems whatsoever. The problems were big however at social level. I was isolated at school, not having any contacts with the other children, and not showing any interest to have any social contacts with them. I adapted in the classroom situation only with very big difficulties.

Thanks to my parents, the teachers were aware of most of my difficulties. Especially in primary school they luckily took me into protection. I could be very erratic if I was forced to join the regular classroom situations, disturbing the lesson by asking odd questions out loud to the teacher, questions that often had nothing to do with the subject of the lesson. I was physically present, but miles away in my head, locked up in a little imaginary world inside my thoughts. Hence the teachers often allowed me to leave the lesson and sit alone in another corner of the class, doing something that interested me to keep busy. I spent most of those moments reading or so. I could be extremely erratic without realising if they did not allow that special “exception”. When there were day trips or week trips I usually was denied permission to join by my parents (and was happy with that because being away from home was very unpleasant for me – I did not want to join) ; during projects I was often granted the “privilege” to work on my own instead of joining a team project.

My results in tests, exams etc were however excellent. Maybe this gave teachers a false impression that the problems were not so big as they really were. During parent-teacher meetings, some of my teachers told that I “can handle anything he really wants”. This was maybe showing that they did not realise the full impact of my problems. My good results at school maybe gave them a wrong impression, failing to understand how big the problems really were.

Q: If one child does not want to participate in a classroom project and another one does, what would you recommend?

A: It would be wrong to cancel a project because one or two pupils are not interested in joining. It would in my opinion be equally wrong to force everyone to join. My advise would be to let those join who voluntarely want to.

Q: But teachers were understanding and tolerant?

A: A lot of them were, but there were exceptions. I still remember the sports teacher once calling me “born stupid” because I didn’t understand the instructions. I can safely say I could say the meanest things to that teacher, but by then I had learnt to keep quiet and not say such things out loud. A few teachers were not understanding at all, some others however were very helpful.

Q: When exactly did you realise you were different?

A: At a very early age. But when you’re very young, you don’t realise exactly what difference you have. But you do realise it at an early age. My interests, behaviour and character was very different than that of other children. I showed very little interest in socialising with other children, instead I prefered to read books and study maps every day for hours. I could stare at the same map for hours daily, looking at those tiny dots on the map, like remote little islands or isolated arctic villages, wondering how they’d be in reality. The few social contacts I had were with adults, at least with them I could talk about serious subjects such as religion, society or travelling. This was impossible with other children and thus my interest in friends of my own age was virtually non-existing.

Q: Did you have a wide imaginary?

A: Many autistic children don’t, but I was a bit of an exception. Rather than playing with toys, I prefered drifting away in a self-created dream world.

Q: How do you describe life with autism?

A: We have a very formal brain. We have difficulties with body language, physical contacts, sarcasm, figure of speech, … We experience a situation or the things happening around us differently than non-autistics, and will also react differently in some cases. This can cause confusing situations. People sometimes do tend to be helpful, even when they are not aware how to deal with a person that has Asperger Syndrome or/and OCD. I remember a co-student once saying “we all see you are different and that you have difficulties, we just don’t know exactly what is different and how we can help to make you feel more comfortable”. In such situations when the good intentions to help are present, I happily will explain everything in detail. Unfortunately, some people just refuse to listen and are not interested in trying to help. Those people I try to avoid as much as I can.

Q: Which are your daily difficulties?

A: Mainly OCD (contamination OCD and other rituals) and anxiety disorder. I live in a flat with two rooms, and one room (which I call the “clean room”) contains all emotionally valuable items. I never enter that room myself without showering first. I wash hands very often. For a lot of small things I have rituals, for example closing the door involves hearing a specific sound. Without hearing that, I can feel anxious all day if the door is closed properly or not. There are a lot of rituals. I am a control freak and can be very anxious when I feel like I am not in control. The rituals create a (fake) feeling of being in control. But the rituals are also exhausting emotionally. They require full concentration, the least distraction makes me start all over again.

There are also social difficulties. Sometimes I can become afraid of someone, even when there is no specific reason for it. Especially if this happens with people you work with on daily basis, this can be extremely exhausting. People often fail to realise the impact of the problems on our daily life and mental health. I feel tired and exhausted very often. When someone has a physical disorder, they get time off and everyone will be very understanding. With psychological problems, in fact people ask us to work at a tempo and pace that we cannot handle like people who don’t have the disorder can. It is like asking an ill person to still work at the same pace as everyone else. The rat race is very exhausting, but people don’t realise this. We may survive in that rat race, but we can’t really enjoy life because it’s so exhausting. It is not justice to demand us to participate in that rat race ; but to change this we need a change of mentality in society, and political changes allowing those who suffer to take time off to work on their health.

Q: Do you really believe you are dirty or not?

A: I very much realise, despite the rituals, that it is an irrational fear and that I fight against a dirt that others won’t see. The name of my artistic project, Illusion of Purity, is not chosen by coincidence. Purity can give a very comfortable feeling, but the moment your life is controlled by maintaining that purity, it becomes a cage.

Speech is finalised with the poem “Cambrils” and with a reference to my arts project website (illusionofpurity.com)