Speech in Barcelona 16 February 2011

Location: Av. Tibidabo, Barcelona

QUESTION: How would you describe life with Asperger Syndrome?

ANSWER: Life with Asperger Syndrome to me means that you have a very encyclopaedical/scientific brain. This means that you have a normal intelligence and can function very well in formal situations, but lack the social skills to read body language, interpretate expressions or social situations, not recognise sarcasm or irony… You feel less comfortable in non-formal situations.

People with Asperger Syndrome can function very well when the context of a situation is clearly described. Within that frame we can function like anyone else. If you know the exact purpose of a situation, and if people behave in a formal way, we function well: political debates, joining friends to a concert, … These situations are well-defined, there is a clear context and frame. Outside of that frame, when people behave in a non-formal way, there can be a lot of misunderstandings. You may react to a situation in a totally wrong or odd way, people laughing at you, and you don’t even realise. I love debating and arts, but I prefer to skip the part where, after the debate, people go for a drink. Because then the context and frame is suddenly missing, as people start to behave less formal. In such a situation I can feel very lost.

People with Asperger Syndrome need a lot of routine, this gives a feeling of safety, of having things under control. This does not mean that we don’t like change. Some people with AS love change, I too need frequent change of environment and activities. The difference is that when I cause the change and decide what exact is changing, the feeling of being in control remains. When a change comes which is beyond my control and which was unexpected, it can feel very overwheling and it feels like leaving that safe environment.

I tend to be open about having Asperger Syndrome because this can avoid some misunderstandings. For example giving a handshake when greeting someone instead of giving a kiss on the cheeck. Or not keeping eye contact all the time, not embracing people. If you explain beforehand what your problems are, people will know how they can make things more comfortable for you (eg not using sarcasm, trying to express things literally) and with some exceptions who like to make fun of you, most people do make an efford in my experience. It for sure can avoid misunderstandings of being inpolite or not interested.

QUESTION: What advise would you give people when dealing with people with Asperger Syndrome?

ANSWER: To parents with children with AS: accept your child the way it is, don’t try to change it. It is a genetic thing after all, normalising will simply not work, and will only cause a suffocating feeling to your child. Try to accept your child the way it is, and try to encourage your child with the things he/she is fascinated by. Try to find something that your child loves, and then try to find other children who are very much interested in the same thing. This can trigger the desire to socialise and learn the child that socialising can be pleasant.

I must add I strongly support separate schools for children with Asperger Syndrome. From own experience, I would say that being the only autistic child in a normal school does not work and only further isolates you. You are different and realise that, so it is not like you will be tempted to socialise with the other children who are very different from yourself. You are prone to bullying and surrounded by children that are very different, this will only further trigger the desire to be alone. Being in a special school with children that behave in the same way –although no guarantees– may be pleasant and trigger the desire to socialise, and for sure it cannot do harm when having a teacher trained in dealing with Asperger Syndrome.

For those who deal with adults with A.S.: try to avoid sarcasm and irony, avoid figure of speech and try to be formal. Remember that people with AS don’t find it pleasant to be touched and often have problems with eye contact. Remember that not embracing or kissing during greeting you, or losing eye contact, is NOT a sign of inpoliteness. Try to be formal and clear about everything, so that the person with AS has the frame in which he feels comfortable. Of course we, the sufferers of AS, have tricks that can make us adapt to social situations. But this is very emotionally exhausting and thus can not work for many hours in a row. When dealing with a person with AS on long-term basis, try to keep his difficulties in mind to make the situation more comfortable for him.

QUESTION: When did you realise you were different?

ANSWER: At a very young age. Of course, you don’t know exactly WHAT is different, you are too young to realise when you’re a child. But you do realise that you are different, that you don’t act or think in the same way as the average child around you. I remember going to psychologists as young as aged 5 or 6. You simply realise you are different even when you don’t know exactly in what way. I remember (or better said: my parents told me) a psychologist at that age tried to convince me about the things children love. I responded “but I am not like the other children”. I was 5 or 6 years old then. It does indicate that I was aware of being different, even when I was too young to realise exactly how different I was.

QUESTION: What were your fascinations as a child and now?

ANSWER: Geography, sports, arts, travelling, politics.
When I was a child, my books were my friends. I spent hours and hours each day, reading travel guides and studying maps, trying to memorise the names and locations of the most obscure villages. Staring for hours at tiny dots on the maps of Siberian villages or remote Pacific islands, trying to think how they’d be. I must add this interest never faded, I still spend a lot of time researching those places and still have a fascination for those obscure locations. As a child, I enjoyed social contacts only with adults, because at least they had travelled and could talk about far away places. That fascinated me.

QUESTION: What are your expectations for the future?

ANSWER: We first need to break the taboo about psychological problems. Once that is done, we can think about better help, better facilities for those affected. Which is badly needed. Us, the people with psychological problems, are the one minority who suffer in silence. There are meet-up spots for all minorities, from gay bars to bars for specific ethnic minorities, and places where followers of a specific subculture meet. However, for us, there is no place where we can go to when we need it, to meet other people who go through the same and will understand what you’re going through. A listening ear can be crucial at some points during depression for example, then it can be crucial to have someone who understands you and knows what you are going through. We simply don’t have places like that where we can just walk in, anytime when we need it most, to talk to an understanding ear.

It is a vicious circle. The taboo makes people afraid to talk openly about the psychological problems they are facing. The fact they suffer in silence rather than speaking out, in its turn keeps the taboo intact. This is a vicious circle and this way things are unlikely to change. You notice the taboo in so many small occasions and ways. For example, people ask you how you are, but they expect you to say “I’m fine, thanks.”. Well, I have unipolar depression, and sometimes I am just honest, answering “I am depressed”. You see in the look of people that they don’t know what to say, or how to react. Of course this is partially a cultural thing, to politely answer “I’m fine”. But then, what is wrong with being honest and say you are depressed? It is in such little things you really notice that the taboo is very strong. By being open, and with my poetry, I hope that I can contribute to open eyes and break the taboo.

The speech is finalised with the reciting of the poems “Windswept” and “By the Sea“. “Windswept” deals with depression, and tells a situation when literally the only thing to hold on to, is hope itself. “By the Sea” is about claustrophobia.

Advertisements