There's no one zebra striped exactly as another ...
Created by Gunilla Gerland 1999

This is a brief out-line of a speech I made in Switzerland at the annual meeting of Worldwide Autism Association, in August 1999

Living with an autistic disability

My name is Gunilla Gerland and I am 36 years old. I was diagnosed with high functioning autism/Aspergerís syndrome at the age of 29. Nowadays I am very high-functioning but I had big difficulties when I was younger. To start from the beginning my parents thought I was difficult to get in touch with; they didnít feel they got a real contact with me. For instance; I often didnít answer if they called my name. But thereís was nothing wrong with my hearing (which they first thought). From my point of view I just didnít know it was so important to look at people or to answer when they talked to you.

I had big temper tantrums periodically; these frightened my mother, because I had no social limits for my behavior. I could throw things and kick and bite if someone tried to come near me. Other people always said there was "no reason" for these tantrums or that they were triggered by little things. There was however practically always a reason for me, just that others didnít understand this. I could for example be very frightened by a sound or by people doing things that I didnít understand.

I was very much alone as a child; I had no friends. Still this didnít bother me much.

I had difficulities understanding the world, and this was very frustrating. Language, for instance; people always seemed to mean something else than what they said, and I never really "got it". All the vague words and expressions were very difficult for me to grasp, and I many, many times misunderstood things.

I had many perception problems; I was very sensitive to touch and sounds. This was very difficult for me. My motor skills were very bad and I would trip, and fall, and spill always. Physical education in school was hell; I was worst in everything.

School was in its entity torture for me; nobody understood my problems and only thought I was ill-behaved, spoiled and badly brought up. I always heard I was a difficult and different child. other children would make fun of me or hit me, and I was severly bullied in school.

I was very good at some parts of the curriculum, and had great difficulties with other; still today my intelligence is very uneven. I am extremely good at some things and totally lost in other. My abilities and talents for language, writing and reading, convinced people that I was a bright kid. So when I did poorly in other things they were sure that I was lazy, ill-behaved, and badly brought up. These wer things I was told during all my childhood.

My poor sense of directions made school difficult; I couldnít find my way to the lunch hall or back to the classroom. If I tried to tell my teachers that I couldnít find my way they would just say; "of course you can find your way; you have walked that way a hundred times". So I had to develop strategies; like following some of my classmates. This was however a problem because of my so called prosopagnosia, i.e. difficulty with face recognition.

As I said physical education was awful, and I felt humiliated by participating when I couldnít succeed in anything. Eventuelly I refused to participate. Teachers were very frustrated by my behavior.

Something which also caused big problems in school and still sometimes does, is what I would call my absolutely genuine lack of sense of authorities; with this I mean that I havenít ever felt that anyone ever would have the right to decide what I should do. I feel that I was born without this sense, that I truly didnít understand that my parents or other adults had any right to tell me what to do, but to others I always came across as consciously provocative.

Another problem Iíve had and still have is problems with automatization. These problems are not well described in literature about autism, still I donít think Iím the only one. I have had to think to do many things that other people "get for free" from their nervous systems. I did eventually learn to swim and ride a bike but it took much more time and effort than for the average child. Some things, like brushing my teeth, is still not automatic motorically for me. My poor abilities in motorical automatisation is also shown at tests, and to see the test results really made me understand better why I have so great difficulties. The funny thing is that when you do everything as if it was the first time (which is the case if you have poor automatic motor skills) you usually do it better or more neatly than other people - this makes it even harder for other to understand that you have a problem with this.

After school I tried to work. I had no idea how to behave socially at a job so I couldnít stay for long. I also became very tired from working, and I didnít understand myself why I couldnít keep a job. I was on long-term sick leave for periods and I was in contact with psychiatry. They never diagnosed me or could tell me what my problems was, instead they suggested I should have therapy. I was in psychodynamic psychotherapy for several years and it didnít help me at all, insetad I felt offended by the therapists inability to listen to what I perceived as my real problems. The therapist wanted to explain everything as resulting from growing up in a dysfunctional family.

Eventually I did find out my real problem, and was diagnosed. That is one of the best things that has happened. The diagnosis also put me in contact with several people with diagnosis within the autistic spectrum and some of them have become my friends.

What feels important to say to people is that there are so many myths about autism, and ideas about what autism "really is". The truth is that autism is what is defined in the diagnostic criterias and that people with autism can be very different from one another - we are all different persons, different personalities with different histories and experiences and this should be understood and respected by everybody.

Copyright 1999 Gunilla Gerland

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