"Normal people have an incredible lack of empathy," the well-known American animal researcher and autistic Temple Grandin is often quoted as saying. Because, according to her, most people usually show little empathy when an autistic child screams from sensory overload or an autistic adult falls unconscious at the train station because it is too loud, too bright and too smelly for them. For autistic people it is very difficult, both mentally and physically, to find their way in this world.
Because autistic people perceive the world differently and have different experiences than normal, neurotypical people. Your brain processes the information differently, be it due to the many stimuli that penetrate the brain unfiltered, be it due to the unbridled fears that flood many autistic people regularly and intensively.
They are unfamiliar with the world of mainstream society and many wonder, for example, why some lies are acceptable and others are not, why the "How are you?" says and not just "Hello", how long you shake hands when greeting someone, and why you can't always say what's on your mind.
Due to the lack of filters, autistic people take in information more objectively and without prejudice than the majority of the population. A more rational perception of the world is a consequence, free from rose-tinted glasses.
For a long time, the idea that autistic people were not empathic dominated. Because they have great difficulty in interpreting what their counterpart is feeling.
The British psychologist Simon Baron-Cohen associated this with a deficit in the " Theory of Mind".explained, i.e. the possibility of opening up the mental states of other people. Because of this deficiency, autistic people lack the ability to put themselves in someone else's shoes and to understand that other people have different thoughts, wants and needs.
Problems on the language level, such as a poor understanding of metaphors, can also be traced back to this deficit in the "Theory of Mind". For example, if someone says they can blow up, an autistic person may not know that the person is angry, but rather think they have wanderlust and want to fly away.
Difficulties in understanding
The "Theory of Mind" is still used in the diagnosis of autism spectrum disorders (ASD) and is considered a reliable tool, especially to be able to determine whether it really is an autism spectrum disorder or something else. In the meantime, however, we also know that autistic people can very well be empathetic.
While they have low cognitive empathy, they in turn have high affective empathy, that is, most have a hard time recognizing that someone is doing badly, but once they know about the condition of their counterpart, they can respond.
In recent studies, the British social psychologist Damian Milton has also questioned the common notion that the social and communicative abilities of autistic people are generally limited. He therefore speaks of the " double empathy problem " to describe the difficulties that autistic people have with non-autistic people (and vice versa).
Milton comes to the conclusion that both sides do not understand each other. He emphasizes that social situations are dynamic processes between people that are not subject to static, universal rules.
It is therefore not possible for just one person to have a social deficit. Rather, no one involved in the social interaction is able to interpret gestures, facial expressions or intonation of the other.
Different does not mean worse
"Neurodivergent people would often be helped if they didn't automatically look for the 'problem' or 'mistake' on their side. The constant message that one's own thinking and perception is fundamentally deficient contributes massively to permanent psychological stress," says zu Alice Laciny in a conversation.
The Austrian scientist was diagnosed on the autism spectrum a few years ago. She considers Milton's "Double Empathy Problem" to be a good example of an alternative approach: "Different doesn't always mean worse, and effective communication always requires (at least) two people to empathize with each other, the further away one's own reality of life is from it, the more difficult it becomes."
Even as a child, Laciny preferred to immerse himself in the worlds of six-footed animals instead of playing with his peers.
Today, the 34-year-old is President of the Austrian Association of Entomologists, has worked on various research projects and named some ant species for the first time in collaboration. And she is one of the few autistic people who can use their special ability to deal with a specific subject in depth and in a concentrated manner for their job.
Flow experiences
What fascinates you so much about insects? "The morphology appeals to me the most, i.e. the physique, the small-scale composition of the exoskeleton, the many different shapes and colors.
Since I am just as enthusiastic about language as insects, I also enjoy naming and classifying them, be it in the description and naming of new species or with anatomical technical terms."
Immersion in a topic is one of many strategies that can make life easier for autistic people. Concentrated activity gives security, it enables a feeling of control, of predictability and can also bring relaxation and recovery.
The Austrian autism researcher Hans Asperger once spoke of a "shot of autism" that is necessary for scientific or artistic excellence. "Two ants may look exactly the same at first glance, both small and brown. Under the microscope you can then see fine bristles, patterns in the grooves of the carapace, thorns on the back or the individual facets of the compound eyes.
On the one hand, this is used to distinguish the species decisive, but on the other hand always a nice experience," Laciny continues to explain her fascination for insects.
Everyday life can be traumatizing
Autistic people have many compensatory strategies to fit into this world. They learn their social behavior through observation, copying and adaptation, but this is usually very tiring and exhausting. "As a minority in society, people with autism are forced to navigate a world that, in many cases, is not designed for their needs," explains Laciny.
In the long run, this leads to increased stress due to sensory and social overload, and as a result, often to psychological problems such as burnout, depression, anxiety disorders or even post-traumatic stress disorder.
Laciny emphasizes that these problems are not part of autism per se, but often result from "masking" - i.e. the perceived or actual need to suppress symptoms and peculiarities in order to be able to meet the requirements of the neurotypical society. "Not only insects have ecological niches, people can also have very different demands on their habitat.
And those who don't have to hide less and develop and live out individual strategies of self-regulation, often as simple as switching off the light in the office or playing with modeling clay in class can meet the often strenuous everyday life with more resilience."
While people with mild autism spectrum disorders can lead relatively normal lives despite all efforts and usually need little or no support, people with severe impairments often need around-the-clock care.
However, there are no concrete figures as to how many people are affected with a diagnosis of what degree of severity. Estimates in the US and studies in Australia have shown that around 40 percent are living with severe symptoms.
Time-consuming diagnosis
In Austria, the number of people affected by autism spectrum disorders is estimated at around 85,000, and the number of diagnoses is increasing, especially among adults. For example, in 2022 the Autistic Aid recorded a significant increase in the area of diagnostics for adults, an increase of more than 50 percent compared to 2021. What is this increase due to? On the one hand to an increased awareness in society.
"This trend is due, among other things, to the autism spectrum disorder topic, which is very popular in various social media channels, which is of course welcome on the one hand because of the greater attention, but on the other hand the capacities of the ÖAH to its limits".
A diagnosis is also a very time-consuming process, taking an average of twelve hours. However, promotion and support have a more efficient effect on the course of development the earlier autism spectrum disorders are diagnosed, in comparison to those affected who are only supported at school age or even later: "A quick diagnosis, which is possible from an early age, increases also the chances of successful inclusion and thus of as self-determined life as possible.
Against this background, the very long waiting times in the area of diagnostics and therapy throughout Austria should be viewed critically," points out the Austrian Autistic Aid, which also acts as the umbrella organization for those affected.
Other associations also complain that the offers for care, support, therapy and diagnosis in Austria are not sufficient. In addition, the support needs of autistic people are very different.
Funding offers and individual support hardly come up to this reality. "In the specific case of autism, it would certainly help to move away from the idea of the linear spectrum," Laciny says of the different forms of autism and support.
Autism is a multidimensional phenomenon that cannot be easily divided into "light to heavy" in everyday reality. For example, "highly functional" people, she speaks of "high masking" could react extremely sensitively to sensory stimuli or be dependent on non-verbal communication at times.
On the other hand, she knows autistic people who are classified as "severe", "who never speak, have motor impairments, but write brilliant blogs and books". According to this, it would often make more sense for the reality of life of autistic people to "adapt access to support to actual, individual needs".
Autism is a complex neurodevelopmental disorder. The current diagnostic books "DSM-5" (Diagnostic and Statistical Manual of Mental Disorders, USA) and "ICD-11" (International Classification of Diseases, WHO) summarize all forms of autism in the diagnosis autism spectrum disorder (ASD).. Autism is congenital and to a large extent genetic. However, not a single gene is responsible for this, but many play a role. The extent to which environmental factors are relevant to ASD has not yet been clarified. What is certain is that vaccinations or a specific upbringing style cannot be assumed to be the cause.
The key hallmarks of autism spectrum disorders are (see also graphic): information and perception processing differently, intense, often unusual interest and repetitive, stereotyped behaviors, differences in language development, and difficulties with social communication and interaction.
Autism is on a spectrum, which means people with it have very different symptoms. While some people in the spectrum do not speak at all, others have largely normal language development. If a person shows autistic behaviors that are not sufficient for such a diagnosis, one speaks of autistic traits.
It is estimated that up to 3 percent of people worldwide are autistic. Autism is not curable, there is no treatment or medication. Therapeutic help includes, among other things, special behavioral therapy (ABA), speech therapy, psychotherapy and ergotherapy, as well as "TEACCH", a method for learning functional behavior. Some people with autism need little or no help, especially in everyday life, while others need full guidance and support. Needs can vary throughout life.