How would you describe being autistic?

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Jutta Kühl:Aleksander, we met on twitter. You are autistic yourself and blog about this topic as well. Perhaps you would like to tell a little bit about yourself and your blog first?

Aleksander: I am 36 years old and am currently in the middle of my master's thesis in information science. A discipline that fascinates me, perhaps also because of my autism. I received my diagnosis of Asperger's autism very late, around 2 years ago. There is actually a very sad reason for blogging on the subject of autism: I was refused medical rehabilitation on the grounds that an autistic person could not follow the rehabilitation instructions. So my diagnosis was reason enough to refuse medical help. To get rid of my frustration and despair, I started writing. A friend of mine, himself autistic, has been running a blog on autism for a long time and so I became a guest author. The contributions were very well received and I realized how important it is for many non-autistic people to have an autistic person write about their view of autism. And so a guest post has meanwhile become its own weekly series.

Jutta Kühl:You have been diagnosed with Asperger's Autism. How does this clinical picture / this disability affect exactly?

Aleksander: (laughs) It's so complex that I should, can and will probably have to write a book about it. I think that if you should describe it briefly and concisely, you can limit the essentials to two areas:

On the one hand, there are problems in social interaction. Autistic people have it z. B. difficult to read other people's facial expressions in all their complexity. What is natural for non-autistic people, autistic people have to work hard. It's like a foreign language that has to be learned. Autistic people also have a problem with irony. H. we do not know whether something is meant literally or whether something is implicitly implied. In general, people with autism tend to take language very literally. Here, too, you have to laboriously learn that z. B. a train can leave for something without actually involving a train. Or that sidewalks aren't actually folded up in the evening.

On the other hand, it is the different perception of people with autism. The best way to imagine this is with a filter: all stimuli that a person feels are subconsciously pre-sorted by a stimulus filter in the brain. This protects people from being overloaded with too many stimuli. This filter does not work or works only to a very limited extent in autistic people. That means: Everything depends on the consciousness that hits an autistic person. Imagine 100 people talking to you at the same time and you hear everything and you cannot filter out a single conversation separately. Of course, this does not only affect the hearing but all senses of the autistic person.

Jutta Kühl:You said that perhaps because of your autism, you are very fascinated by your subject information science. Can you explain this connection?

Aleksander: With pleasure. The information sciences deal, among other things, with information retrieval, i.e. the search for information. That alone suits my thirst for knowledge considerably. Autistic people can have a so-called special interest, i.e. search for information on a very special topic, collect it and convert it into knowledge. My special interest is rather general and I simply call it a thirst for knowledge. Of course, this can be quenched particularly well with professional tools and search techniques. However, it is also the general handling of information, its evaluation and assessment which one, among other things. learns in the information sciences and which can be very helpful to an autistic person in search. My master's thesis deals with the construct of information literacy, which describes these processes in the information process and reflects them quite well. I am in the process of designing my own competency model. In return, the somewhat different, i.e. autistic, view of things and connections suits me very well. Perhaps I should also say: My current special interest is information science. Which then finally closes the circle.

Jutta Kühl:I am addressing you here by your first name, Aleksander. You deliberately do not want your full name to be published. Why? Do you feel stigmatized as an autistic person?

Aleksander: Here I have to go back a little further so that people understand me and other autistic people better as well. Before my late diagnosis, I had a lot of questions. After the diagnosis, they were different, concerning the future. First of all, these are small hurdles that you have to deal with. I had managed to some extent and was actually at peace with myself. What followed was the aforementioned rejection of medical rehabilitation on the grounds of autism. At such a moment, and especially when such rejections come from healthcare professionals, a hurdle becomes an insurmountable wall. In one fell swoop you are confronted with the fact that a diagnosis of autism alone, regardless of personal characteristics, can obstruct a lot of things that others take for granted. Inevitably, very existential questions arise, including those of the future job search. If medical professionals use stereotypes to a greater or lesser extent, how should a personnel administrator know better? I have a very rare last name and for a long time I was afraid that if my name appears together with autism that it would block my chances in life. This is different now, also due to my writing. The insurmountable wall became a hurdle of doubt. Doubt whether I can really achieve more as a tangible person for autistics and the image of autism in public. In the last few hours it went very quickly, the hurdle became a step and the step became a level path. I will go this way in the future and no longer hide. However, I will certainly not wear a sign: I am autistic! But you don't need that either! My hope, also within the framework of the World Autism Day, is that I can really make a difference as a namable and tangible person!

Jutta Kühl:As you mentioned earlier, autism has different manifestations. Is there any kind of therapy - for example in your case after your diagnosis? How was that with you?

Aleksander: No. I have not received any therapy. The usual therapies for autistic people largely relate to training e.g. B. facial expression recognition or social situations. They should promote the social interaction of the autistic and make it easier for them to integrate into "normal" life. This may still make sense in young autistic people, but if you get your diagnosis in your mid-30s, you have to question the meaning and purpose of such therapy. The best and most effective therapy for me personally has become writing. I reflect very carefully, try to describe autism - which I take for granted - and think about it a lot. That helps me personally more to understand my autism, the other perception and all of its effects than if I - I know that sounds a bit provocative - should be told by a non-autist how they think I should behave. You can only understand autism if you are autistic yourself. It is important that I am only referring to my personal situation and autism! Therapies z. B. due to other problems such as depression can make perfect sense and should not be rejected out of hand. This is where autistic people are unlikely to differ much from any other person.

Jutta Kühl:How do you rate dates like World Autism Day? Do commemorative / information days like this help?

Aleksander: Like many things in the world, they are a curse and a blessing at the same time. Such theme days are clearly a curse if you look at the following: they are often purely alibi. We don't do anything for autism? But! It's World Autism Day!
Unfortunately, many of these theme days also tend to take place with the exclusion of the mass media. To take an example: The mass media hardly heard anything about World Down Syndrome Day, which was only recently. On the other hand, during Forest Day, something was always on the radio! I am of the opinion: as long as the mass media, which also reaches a lot of people, do not take something like this to heart, the effect on the broad spectrum will fizzle out rather ineffectively. There can be no talk of sustainability, the topic will be forgotten for the remaining 364 days.
A curse and a blessing at the same time is the fact that you can find many pearls on such days. However, only if you are specifically looking for it or if you move thematically in appropriate circles. They only rarely reach the masses.
The blessing of days like this is definitely that more and more affected people and associations speak up and provide information. This is extremely important and I can only call on every autistic person who feels like it to speak up on World Autism Day and get involved! I will definitely do it!


Info links:

Aleksander's Twitter account

Aleksander's blog

Jutta Kühl's Twitter account

Article "Possibilities of physiotherapy for Asperger's Syndrome"