What causes autism in adults

Unrecognized Symptoms - Autistic Disorders: Many sufferers do not receive a diagnosis until they are adults

Autistic Disorders: Many sufferers don't get diagnosed until they are adults

There are more and more people with autistic disorders. But some only find out about it as adults - or never at all. How is that possible?

Iris Köppel often thought that she was neither her parents' child nor related to her brothers. She felt strange. The feeling became a constant companion - in school, in training to become a primary school teacher, at work and in private life. Depression, suicide attempts, therapies and countless diagnoses followed. The constant “not finding one's way in life” remained.

In 2008, Köppel attended a further training course on the subject of autism - and realized: That's me! Iris Köppel was 39 years old at the time. A few months later, she was diagnosed with Asperger's Syndrome.

Many adults feel like Iris Köppel. "We are seeing an increase in inquiries from adults who have suffered from a variety of problems throughout their lives, but are only now connecting their problems to an autism spectrum disorder," is how specialist agencies such as Autism Help Eastern Switzerland describe their experiences. Through the presence of the topic of autism in the media, these people become aware of the topic and recognize themselves and their problems in the clinical picture. But how can it happen that people with autism remain “undiagnosed” for half their lives?

As early as 1944, Hans Asperger used the term "autistic psychopathy" to describe the symptoms of what would later become Asperger's syndrome. But it was not until decades later that Asperger's work was taken up again, continued and finally included in two international diagnostic systems in the early 1990s. Before that, there was no medical explanation for “being different” for those affected.

Around one percent of all Swiss

Today, experts speak of Autism Spectrum Disorders (ASD) in order to cover all the different forms of autism: The spectrum includes serious disorders, sometimes paired with intellectual disabilities (early childhood autism) to less severe impairments with average or above-average intelligence - for example Asperger's Syndrome or High Functioning Autism. It is estimated that one percent of the Swiss population suffers from an autistic disorder. In Zurich, with around 410,000 inhabitants, this would mean over 4,000 people affected; in Berlin with a population of 3.5 million to 35,000! But where are the thousands of autistic people?

For example, there is the salesperson who doesn't look anyone in the eye. Those affected often do not consider that these weaknesses could be an autistic disorder. “Many people with ASD have come to terms with being“ different ”- sometimes even without a diagnosis,” explains Florian Scherrer. The St. Gallen social worker supports and accompanies people with autism. «People like Iris Köppel often seem inconspicuous. However, you need a lot of energy to find your way around and adapt to everyday life. For years they have been looking for an explanation for their “difficulties” and only come across the subject of autism at a late stage, ”says Scherrer.

It would be nonsense to create a profile for these "late diagnosed autistics". "There are people with autism in every professional group, at every age, in every social class," says Scherrer. One thing they have in common is the difficulty in showing and classifying emotions, communicating spontaneously and mastering unfamiliar situations. Everything that is dynamic or emotional - small talk at the vernissage or a surprise visit from a colleague - often cannot be "classified" and causes difficulties.

Women often compensate for these weaknesses better than men. With restraint and observance, they try to copy behavior patterns and cover up deficits. Men, on the other hand, often appear “clumsy” in social situations. The gender-specific behavioral patterns are considered to be the reason why there are a noticeably high number of women among the "late" diagnosed autistics. But what use is an autism diagnosis in adulthood anyway?

The diagnosis as salvation

"It was a relief for me to finally know why I was offended and why I couldn't cope with life," recalls Iris Köppel. There was no fear of being labeled as autistic, but the hope of getting the right support. On paper, this means: Depending on the severity of the disorder, IV support through a pension, coaching, retraining, a sheltered job.

But an autism diagnosis is not only important for those affected, but also for those around them. “People now know why I behave differently than expected. That makes collaboration and life easier, ”Köppel sums up. Even with a diagnosis, life does not become conflict-free. In the public, the image is widespread that autism is coupled with a pinch of “genius”. Rain Man sends his regards. "Oh, you are autistic - where are you awesome?" A question that turns into a farce when you fail to hug someone.

Getting a diagnosis is not easy. A waiting period of several months can be expected for an "adult clarification". Adult psychiatry urgently needs to adjust to the changed reality of autism. Because the "late callers" will no longer disappear. On the contrary. Or, as an autism expert provocatively remarked: “One percent of the population is affected. Who will give you the security of not being autistic too? "

Why autistic people don't have empathy

The brain area for empathy is only weakly activated in autistic people, so they have trouble showing compassion and empathizing with other people. This is reported by a research team headed by ETH Zurich. Brain-
Researchers working with ETH professor Nicole Wenderoth have used MRI images to show that autistic adolescents have weak nerve activity in the anterior cingulum. The emotional experience also has its seat in this brain region.

The researchers were able to demonstrate the unusually weak nerve activity in this part of the brain when the autistic test subjects observed how a third person was surprised either positively or negatively. In control persons without autism, the nerve activity showed a clear rash in such situations. “People don't like surprises,” reported Nicole Wenderoth, Professor of Neural Movement Control at ETH Zurich, yesterday. "That is why the brain continuously creates models of what is going on in the minds of others based on environmental stimuli." This ability is extremely important when dealing with other people. In such a case, however, people with autism cannot update the model in their head because the activity rash in the cingulum is too weak.

Researchers have realized that the social deficit in people with autism must be related to this abnormal activity in the anterior cingulate. The new findings could help improve behavioral therapies for people with autism disorders. It could be promising to offer those affected a special reward to train their social behavior. (alf)