Speech in Barcelona 19 February 2011

Speech in front of psychology faculty students.
Location: Barcelona University, Mundet campus.

 

QUESTION: How would you describe having Asperger Syndrome?

ANSWER: To me it means having a “scientific/formal” mind. People with Asperger Syndrome tend to have a normal or high intelligence, and can function very well in formal situations. However, we can easily feel lost in social or less formal situations when things such as body language, figure of speech, irony, sarcasm, … are included. A lot of people with AS tend to dislike being touched, and have difficulties with eye contact. In less formal situations, these things are omnipresent. It can lead to confusing and somewhat embarrassing situations, with people trying to get you in less pleasant situations and make fun of you (without me noticing !). I feel most comfortable when there is a clear context or a frame, this is like a safe situation or safe place. In those situations I can function very well. Examples could be a political debate. However, when those same people suddenly meet in a different place or situation, a different context, I feel lost and the clear context is gone. This can be very hard.

People with Asperger Syndrome tend to need routine, this also causes a feeling of safety, a feeling of being in control. However, that doesn’t mean that I dislike change. I need change quite often, however I only feel comfortable when the change is something I have control of. When something breaks the routine or causes change beyond my own will and control, then I feel very uncomfortable because again there is no clear context where I can rely on.

I tend to be open about having Asperger Syndrome, OCD and depression. In my experience, most people do try to understand and help you. There are of course some people who will abuse the information to get you in a difficult situation. But the majority of people, from my experience, tend to at least try to understand and help you. So I encourage openness.

 

QUESTION: How does a regular day look for you?

ANSWER: I wake up in the morning, I shower, and go to work. Then from 9:00 to 18:00, I do my job. In the evening I relax with music or internet usually. This is the ideal day. However, sometimes my problems stand in the way of this. Some days the OCD is just too strong and I need to do the rituals in order to keep concentrated and remotely at ease. This can cost a lot of time. Some days the depression is just too strong and I cannot concentrate and need distraction with non-work related things. In cases like that, I sometimes feel too exhausted to just go home after work and relax, and instead have to waste money in cyber cafes or such. Or it can happen that I compensate the time lost on OCD or depression by working overtime until 21:00 or 22:00.

 

QUESTION: Do you think other colleagues are working all the time and never spend time on private things?

ANSWER: Oh, for sure not! Some are on Facebook very often, or they read private emails or private websites. I assume this means they have done the work they scheduled to do, or maybe take a short break. This is irrelevant though. I am too honest to let my OCD or depressions stand in the way of doing my job properly. If other people don’t do their job correctly, that’s their choice. It doesn’t mean I have to do the same, and I am too honest and maybe too proud to let OCD or depression be the reason of losing time without compensating it.

 

QUESTION: What is your job?

ANSWER: I am in credit & collections. Which means I have to call people who don’t pay their bills… I know it is very much against my political believes (I am member of a left-wing party) but it pays the bills until I can live of my arts full-time, which is my ambition. Because my arts are orientated at breaking taboos, spreading important messages. I believe this is so much more important than asking for money to make an already wealthy company get even richer 🙂

 

QUESTION: How was your childhood?

ANSWER: I was a very isolated child, with little or no interest in interaction with other children. My passion was (and today still is) geography, other cultures, travelling. I could stare to maps for hours, memorising locations of countries, memorising the names of the capitals or flags, wondering how those tiny dots of remote islands or remote Siberian towns would look like. I could read travel guides for hours every day. If I socialised, it was with adults, at least they had travelled. I had very little interest in contact with other children.

 

QUESTION: Have you ever had moments of violence as a child?

ANSWER: Rarely. Very rarely. I did have moments when I behaved erratically, with some imagination you could call that verbal violence. For example at school. I was physically in the classroom, but I was miles away with my head, in a world of my own. Sometimes I didn’t pay attention at all to the lesson, then to suddenly interrupt the teacher and ask a question about a subject totally irrelevant to the lesson. I just was miles away with my head, and I was not aware I was disturbing a teacher in the middle of the lesson. I was in the classroom physically but was somewhere in a world of my own in my thoughts. I just didn’t realise that interrupting the teacher with questions that made little sense, was not appropriate. Sometimes I used to shout loud, not realising the whole class was staring at me, not realising I interrupted the lesson ; that was mainly in moments of anxiety or panic. I would not consider it verbal aggression though, but rather a cry for help or outing of frustration. It was certainly not intended to be verbally aggressive.

Later on, when I was like 10 or 11 years old and thinking back of how I behaved 3 or 4 years ago, I was laughing at myself, thinking “what the heck was I doing ?!”. Retrospectively I realised that I must have been in embarrassing situations quite often, but I only realised that when I was a bit older and bit more mature.

My parents did lots of lobbying with the teachers, explaining I had problems and trying to make them understand them. Some teachers did understand, some didn’t. Those who did, often gave me other tasks than the other children, or allowed me to leave the lesson in order to read books or do something different in a quiet corner of the classroom. That way I could not interrupt the lesson and was doing something useful that interested me. These teachers realised the difficulties I had and made no problem of me sitting somewhere in a corner of the class reading a travel book while the others had a lesson in mathematics.

 

QUESTION: As the students here are getting trained in dealing with children with development problems, what would your advise be in how to deal with autistic children?

ANSWER: in the context of one autistic child (or a few) in a “normal” class: try to find something that the autistic child is fascinated by, and give him tasks and works based on that. For example, if you want to give homework about grammar and learning to write essays, give the autistic child the work to write an essay on that thing he really likes. Also, I think the teachers allowing to leave the class and do something by yourself now and then, did the right thing: they realised that it was the best solution because they realised the problems I had.

Of course, ideally there would not be one autistic child in a normal school. It makes you prone to bullying because other children realise you are different, they just don’t lnow how to deal with it or how to react. You get isolated even further and the bad experiences with the other children take away the desire to socialise. I support special schools for autistic children where they are surrounded by other AS sufferers (less chance of ever being bullied !) and where the teacher is trained in dealing with autistic children. This would be ideal, for example if the teacher finds out the fascinating subjects of each child he can form small groups of children with similar interests and use those interests to make them actively participate in the lessons and keep them motivated. And also, this could learn the autistic child that social contacts with other children can be pleasant! For sure it would be better than being the only autistic child in class, that only makes you an easy victim of bullying and only makes you further isolated.

 

QUESTION: You tried different types of therapy. Which ones were the best experiences?

ANSWER: Talking, lots of talking. The important thing with my OCD is to try to explain the absurd thoughts and fears I have, so that the therapist has a good understanding of the exact problems. Once this has been achieved, rational power can be used to try to analyse and replace those absurd thoughts by more rational thoughts. This has been quite helpful for me.

I also tried cognitive-behavioural therapy, but there I have less positive experiences. The problem with those are that often the therapist is very focussed on the OCD, forgetting the patient has Asperger Syndrome as well. Whereas it is important to find a balance between those two. People with AS tend to be very emotionally attached to those things that mean a lot to them. A cognitive-behavioural therapy will be too overwhelming when they ask you to experiment with exactly those things that are so emotionally important. It is like a wall that is simply too high to climb. At least a few objects should be kept aside to exclude from experimenting, that way you avoid the situation where the patient feels as if everything he cares for has slipped away. For patients who also have Asperger Syndrome, this is very important to make cognitive-behavioural therapy work.

 

QUESTION: When were you getting psychological help for the first time?

ANSWER: I was already visiting psychologists from very early age. My parents tried to get a correct diagnosis, but in those days this was quite hard. Hence I visited several psychologists, some were very friendly and I got along with them, some weren’t. At that age you don’t grasp that you visit a psychologist. I remember one of them was living in a big mansion in the middle of a very rural area, like a forest, with a very big avenue with trees on both sides. To me, as a 5 year old, that was just “visiting the strange lady in the woods”. I didn’t realise, I couldn’t realise, at that age that this was a psychologist. For me it was awkward to visit a person I totally didn’t know, who would talk to me about strange things. It was very strange because you’re too young to realise why exactly you’re there. This doesn’t mean you don’t realise you’re different, you very much do. One psychologist once tried to teach me something and said all children liked that. I answered “But I am not like the other children”. I realised I was different. I was just too young to realise exactly how different I really was and what was different about me.

 

QUESTION: Right now as an adult, you are more comfortable in social situations?

ANSWER: As said, in formal situations and in a clear context, I feel fine. If I go to my job, I know exactly why I am there. If I meet people from my political party, I know why I am meeting them. It is formal. However, if I would meet exactly the same people in a different place and they behave less formal, I’d find myself lost and wonder why I am there. If I am in the office and people suddenly talk to me about a subject totally not related to work, I can find myself lost as well, giving some odd answers and before I realise they’re already having a laugh at me. Context is very important.

Also, even at this age, I have problems with figure of speech. Of course once you know someone well, you know their way of talking. But with new people I meet, it is still the case that I take things literally and don’t notice signs or body language. If someone tells me “meet me at the subway at noon” and he/she is not there at noon, I will wonder if this person suddenly doesn’t want to meet anymore, or if anything bad happened, … To me, there is no figure of speech but just a very literally quote: “we meet at noon”. If they move that appointment a few times, I wonder why and feel odd. Because I have difficulties to interpretate situations that may cause them to move the appointment. To me, if someone says “we will meet every Wednesday”, it is like a formal agreement rather than expressing intention. That is still quite often the case, just like in childhood when my parents had to really say “we go there for 1 hour” and leave after exactly 1 hour because of me taking that info very literally.

Of course there are tricks to better fit in in a less formal situation. But these can be emotionally exhausting. I cannot spend a whole day, for example in the office, playing that role. Hence why I prefer to be open about my disorders, because it makes it easier to understand for everyone and can avoid misunderstandings. The majority of people, from my experience, will try to help you and keep your difficulties in mind.

 

Speech is concluded with the reading of two poems, one about panic attacks and facing your fears (using metaphors such as “putting the knife in the wound” and “bleeding” – metaphors for facing your deepest and most painful fears and not avoiding the confrontation even when it is emotionally painful) and one more optimistic poem about how everyone should be proud of whom they are, regardless of their issues or diagnosis.

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