Speech in Barcelona 18 February 2012

Summary of speech at UB (University Barcelona) – ICE Campus Mundet – Edificio Migdia
Speech in front of psychology students and teachers dealing with autistic pupils

QUESTION: Could you describe yourself as a child? What were your difficulties at school?

ANSWER: I was a very reclusive child by choice. I had no interest in being friends with other children of my age. My books were my best friends. I spent most of the spare time in my room reading travel guides, studying maps, … staring at tiny dots on the map, very small places where almost nobody knows they even exist (for example Tiksi, Dikson, Ny Alesund, …), wondering how they would be like in reality. I had no interest in contacts with other children. My parents initially motivated me to make friends but quickly enough realised I had no interest in that.

At school I could be very erratic. I was a child very much locked up in the dream world inside my head. I was physically there, in class, but in my thoughts I was in a completely other world. I could interrupt classes when it was not appropriate. Of course my memories are vague, but I do remember a few things concretely. For example I remember during a maths class I suddenly interrupted the teacher, speaking out loud and asking something that had nothing to do with the subject of the lesson. I didn’t realise that it was inappropriate, I was always miles away with my thoughts. After a while teachers allowed me to sit alone in a corner of the class to read books or do something different that interested me, or even go to another room to read books or do something that interested me, instead of following the lessons. They realised this was better for both myself and them, because –partially thanks to my parents having informed them of my problems– they knew I had my problems and could not help my behavior.

I did not participate in most school group activities. If there was a theater with the class, a day trip with the class, or another group activity, I usually did not participate. When there were projects to be worked on, I often was given special permission to work on my own.

QUESTION: Do you think it is a good idea that they allowed you those exceptions?

ANSWER: Yes, for sure. I very much think it was appropriate. Let me first tell that I think it should not be the case that you are the only autistic person in a “normal” (I hate to use this word, but you understand what I mean) class. This should not be. You are totally different than every child around you, and that makes you a popular target for bullying. I was bullied a lot, both verbally and physically. It further disencouraged me from social contacts. I don’t think it is good to have one autistic child in a regular class. Special schools should exist where the autistic child is surrounded by other autistic children, and with teachers who are trained in dealing with autistic children. Then it may even encourage socialising, because you’re surrounded by other children like you. In a regular school, you’re totally different than anyone else around you and that doesn’t work.
Now sadly enough, in that time, special schools were inexisting. Hence I do think, if there is no alternative to be the only autist in a regular school, that is is very much justified to be excuses from group activities.

QUESTION: Which difficulties do you experience now? How would you describe yourself?

ANSWER: I think we (autistics) are people that very often are physically there, but not absorbing the things that happen around us. I talk about things such as humor and sarcasm, which we don’t understand. Body language and signs made, which we don’t understand. Not understanding when something we say is inappropriate. It is like we are somewhere physically and we see and hear what happens around us, but we don’t know what it means. Which can lead to some confusing and sometimes embarrassing situations. We see and hear, but often without understanding the exact context.

This is also why I encourage to be open about your problems. Of course there will always be some people who have bad intentions and abuse the knowledge they have about your difficulties. However, I do believe the majority of adult people will at least try to understand and try to make things easier for you if you tell them about your difficulties. There is no reason to be ashamed anyway, and even if a person does not fully understand what autism means, they can at least try to help to make things a bit easier if they know what exactly is making things hard for you.

I have clinical depression and OCD. The OCD includes a lot of rituals. This can be extremely exhausting emotionally. Especially working days are very exhausting. The OCD dictates your daily life. For example after eating I need to go to the toilet to do a handwashing ritual. My house is divided in two rooms: a clean one where I keep all emotionally valuable items such as my books, records and computer ; and an “unclean room”. To simply work on my computer requires a shower and putting on clean clothes first before I will enter that room ; the next time I use my computer I will again use new clothes because the clothes I have used the time before have in the meanwhile been in the “unclean room”. To be sure I make no mistake, everything I do is written down: every site I visit, every email I send, … I write down everything to keep anxiety under control somewhat. This is however very exhausting.

Working days are however the most exhausting. Because you are tied to a schedule, you have no flexibility. You are expected to perform between a specific given time and you cannot just tell your employer you need a 2 hours break or skip a day of work because your depression is too heavy to allow concentration, you cannot just tell your boss you cannot do your job because of OCD. So you have no choice but to do the rituals at work. Only then you can concentrate on your job. If you explain the psychiatrist about your difficulties, they’ll just give you some extra pill, but they’re not going to defend you when your employer is having problems with the limitations your disorder gives you.

QUESTION: We do work on these rituals, not? For example…

ANSWER: Indeed, we work on it by trying to replace an irrational fear by a rational thought. We try to analyse the irrational fear and then replace it by a rational thought. For example the idea that dirt could stick to an electrical object and make it function badly, or the idea that my mobile phone would no longer function if it gets a tiny bit wet from the rain… We try to analyse such irrational thoughts and replace them with rational thinking. Generally, this works very well.

QUESTION: We do not believe in “teletransportation”, do we?

ANSWER: Indeed, the idea that something dirty could destroy an object is one of those irrational fears which we replaced by rational thinking. So far, it goes very well, with the nuance that it is exhausting. You always fight against rituals, depression, etc and to always reply to your own irrational fears and have to convince yourself of the rational part, is very exhausting.

I am very exhausted all the time, and this is why weekends have become times of recuperation instead of times of recreation. I have to recover from the daily struggles during the working week. I have a computer at home, but I still visit internet cafes. I already have the exhausting fight against the OCD 5 days a week at work, then it becomes tempting to in the weekend avoid more stress and choose the more relaxing option, even if this includes paying for something you have at home. I see it as paying for having peace of mind, paying for being able to relax for a moment instead of being confrontated with stress and anxiety all the time.

As I said, working days are the hardest. It is very exhausting to have to perform while you have to face depression, OCD, rituals, … I write everything down. From switching off the lights, closing the door, plugging out the electricity cable, … so that if I feel anxiety during the day, I can re-read what I have done. It is very exhausting though and you have no flexibility. Nobody will defend you against your employer if you cannot do your job for a few hours because of OCD or depression. A psychiatrist will maybe give you some extra medication but is not going to talk to your boss to defend you. You have to do rituals to maintain concentration at work.

A lot of hypocrisy is involved too. A lot of companies these days try to work on their positive image by stating that they respect that each person is different, that they respect different attitudes, backgrounds, problems, … This is true only as long as you perform and as long as they can use you. The moment you have very serious problems that make you underperform, the tolerance ends. It is hypocrite, very hypocrite.

QUESTION: Do you wish to read one of your poems?

ANSWER: Yes. I will read one of the earlier poems I wrote and which I read during every performance I do, “Windswept“. The poem is important because it reflects the feelings when all you have to hold on to, is hope itself. It is about the moments when things are all going wrong and you have no clear goal to hold on to anymore, except for the abstract concept of hope itself.

I would also like to direct myself to the students and teachers in the audience: we need to break the taboo about psychological problems. If we want people with psychological problems to have better rights and better circumstances in daily life, the taboo has to be broken, people have to be educated. I try to do this using art, some others have a different way to raise awareness. Raising awareness is very important. If you support our struggle, please let me know about places where a performance, speech or event could be organised. This is a struggle we fight not only here in Barcelona, not just in Catalonia, not just in Spain. If you know of any place where we can get something organised, in Barcelona or another city, please let me know. Ask your friends and family in other parts of Spain if they know about a place to organise events. If you support the struggle against the taboo, please do let me know, we must spread the word and we need places to get things organised!