Selbsthilfegruppe AUTISMUS

im Main Kinzig Kreis

INTERESTING FACTS

What is autism anyway?

What makes dealing with autism so difficult?

What might a barrier-free environment for autistic people look like?

What do affected people want from society?

What is Autism anyway?

…the stereotype of an autistic person is that he is only interested in himself and not in others. He would never crave companionship and has no feelings. This stereotype is not true. It is simply a prejudice. On the contrary, people with autism sometimes feel more, just can’t show it, want to belong, have friends only between want and can stands a big obstacle. A different perception. A different language. People with autism spectrum disorder perceive, think and feel differently. At least in some areas, not in all. What does that mean exactly? And what impact does this have on everyday life ? An autistic person finds it difficult to put themselves in other people’s shoes and to consider other points of view. They often cannot imagine what another person is thinking, perceiving or feeling. And if someone cannot infer the thoughts and feelings of others, it is also difficult for them to understand their intentions and actions. In addition, people with autism have trouble adjusting to change and need clear structure and action planning. In people with autism, actions simply do not become automatic. Lack of structure and change always lead to insecurity. People with autism often miss the connections and focus very strongly on details. For example, if a photo shows a bed with a large pillow on it that is constricted for some reason, as a neutrotypical person you will still recognize a pillow because a bed usually has pillows and blankets on it. An autistic person would get the idea that there might be a noodle lying there. So instead of looking at a forest, they look at each individual tree. They are so focused on the individual stimuli, i.e. the details (which we often overlook), that they sometimes do not even notice that there are similarities between things and situations,- which are, however, crucial for everyday life. The lack of an overview also leads to a lack of orientation, which in turn quickly makes people feel insecure. Another great challenge for an autistic person is that all stimuli arrive with the same intensity and cannot be filtered according to what is important or unimportant. This is also the reason why so-called stimulus overload can occur. An autistic person is then hopelessly overwhelmed and may start screaming. However, if I create as much security as possible for an autistic person in advance in everyday life (e.g. through structure – daily plans), affected persons can compensate relatively well for other hurdles that are still present, so that they “fit in” in society, so to speak. To be able to compensate means for autistic people to wear a mask, they are not themselves but they copy neurotypical behavior. Wearing a mask then means, on the one hand, being able to belong, because I send neurotypical signals, -although not intuitively but “apparently”, in order not to be excluded, and on the other hand, it gives them orientation in social situations, but…. isn’t it actually totally sad? Wearing such a mask also leads to far-reaching psychological consequences, such as depression, burnout, and so on. So wouldn’t it be much nicer to support autistic people instead of making them fit? For example, by providing a barrier-free environment where people do not have to explain their differences. We do not flutter through the world as birds although we are not birds. … Translated with www.DeepL.com/Translator (free version)

What makes dealing with autism so difficult?

Everyday life catches up with you. Only over time did I and my family develop an awareness of what autism actually is.
By that I don’t mean the clinical diagnosis, which is certainly important, or strategies for therapeutic intervention.
Rather, it is the awareness of how autism changes my everyday life and our lives, and how my daughter’s “being different” challenges me to question my thinking and my actions.
Ultimately, it’s about understanding what exactly the challenges are.
What do I actually want to achieve as a mother?
Is it about my child behaving in accordance with my requirements, or is it about us living well and harmoniously together as a family, so that everyone has their place?
What positive influence can I have on my child’s development and independence?
Everyday life always catches up with you.
The first few years were quite exhausting. My daughter behaved completely differently from other children and that made everyday family life, the effort for everyday things, the constant adapting, the perceived isolation and, and, and… so difficult.
At first, little advice from the outside helps.
Self-doubt and questions arose.
I was not trained for “special education” at all.
Except for my motherly intuition, I brought nothing with me and the question was, am I always right with what I do? Of course not, because I spoke a completely different language. At least at first.
I was overwhelmed by it all.
Over time, I acquired my own strategy that helped me and us to live a good life. I would say that this strategy is needs-based. I have learned to read and understand autism.
True, there are always new challenges and also changes in how my daughter deals with autism over the years. But we now know that for every challenge there is also a solution that we work out together, since we can finally speak the same language. -Marina-

What might a barrier-free environment for autistic people look like?

Accessibility measures are often limited to aids for people with walking disabilities, as they are easy to define and comparatively easy to implement for this group of people. However, people with autism also face numerous obstacles in everyday life that limit or endanger their participation, their well-being, and their health. It is therefore important to define and demand accessibility measures for autistic people as well. Of course, the existing difficulties are different for each affected person, but some general aids, some of them even very easy to implement, should be suggested to make everyday life easier and more worth living for people with autism as well. E.g. by visual aids (signposting, labeling of public facilities, markings, symbols), reduction of acoustic stimuli (headphones, announcing unavoidable noise), use of clear, unambiguous simple language, not using idioms, structures in everyday life, explaining by facial expressions and gestures, etc.).
In summary, we can help autistic people enormously in everyday life with predictability, planning, logic and clear language.

What do affected people want from society?

That an autistic person or the relative does not have to explain himself for the differentness / the differentness of his children and above all that the diagnosis is not so trivialized by society, which unfortunately often happens.
There are often statements like “My child does the same”, or “then it is probably also autistic”. Or “I know it, it’s nothing special.”
Hearing such statements frustrates many autistic people or parents.
Autism cannot be recognized at “first sight” and it is not a diagnosis that you can just get or that you can have “a little bit”. Much of what constitutes autism is not outwardly visible and not everyone carries their situational or permanent suffering outwardly. Many adapt and compensate until it is no longer possible. Until they then collapse behind closed doors.
So an autistic person is under constant stress to comply with society. I think it is time for society to accommodate autistic people.
We can meet them with acceptance, recognition of their abilities, support of autistic people and dissemination of knowledge about this very special disorder, whose research is still in its infancy.