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Dossier: Strong mind

Living with autism: “We take things very literally”

People with autism see, hear and perceive the world differently. This often leads to difficulties in their social life. How do they feel and what makes daily life easier?

Text: Katharina Rilling; Photo: Caleb Woods / Unsplash

Now means now. At least for people with autism. For other people, “now” can mean straight away or a little later. Matthias Huber first had to learn that language and what people say leave room for interpretation: “When my parents said to me, ‘We’re going now!’, I leapt up and put my coat on. I just couldn’t bear it if it took another ten minutes before we actually left.”

Understanding facial expressions and gestures  ‒ a closed book?

Huber has Asperger syndrome, a less noticeable form of autism. Unlike many people born with the congenital and incurable developmental disorder, he doesn’t have a problem with language. However, Huber has difficulty communicating: “People with autism take everything very literally. And facial expressions and gestures are incredibly hard for us to understand. Is the person saying one thing but meaning another? Are they being serious or ironic? This uncertainty puts me under constant stress.”

Autistic people always have to think very carefully during a conversation, which can make them seem distracted, inward-looking, or even unfriendly or disinterested. This makes communication very difficult. Another aspect that is very hard for people who aren’t autistic to understand is that we find last-minute changes and surprises extremely unpleasant”, explains Huber. “If a person with autism has arranged to do something, then it is set in stone. For example, if you’ve arranged to meet for dinner in a restaurant, and your friends prefer to sit outside because the weather is nice, we panic and may complain loudly or run away.”

“Even quiet noises can be as painful to the ear canal as shards of glass. Some noises are so unbearable that you have to leave the room.”

A broad spectrum of perceptions

Over the years, Matthias Huber has made himself an expert in his own development disorder. Today he is a psychologist at the university hospital for child and adolescent psychiatry and psychotherapy of the UPD in Bern and provides support for children and young people with autism. He explains that today it is officially known as “autism spectrum disorder” (ASD) because of the wide range of symptoms and severity. No two patients are the same.

Huber himself likes to talk about “autistic perceiving and thinking people”, because the one thing they have in common is that they see the world differently to other people. “Even quiet noises can be as painful to the ear canal as shards of glass. Some noises are so unbearable that you have to leave the room. Artificial lighting sometimes feels like looking at the sun without sunglasses. And some surfaces are so unpleasant that you can’t touch them.”

For autistic perceiving and thinking people, everyday tasks such as shopping, going to work or the cinema or taking the tram can be huge challenges. All of this is so energy-sapping that the memory of those affected suffers, says Huber, referring to a study that shows that the brain performance of autistic people – in contrast to that of people without autism – suddenly improves with age. One explanation could be that the enormous everyday stress stops after retirement, because then people with autism spectrum disorder can live according to their needs. For example, they can take the tram and go shopping before or after the rush hour.  

Love on the spectrum
Finding love can be hard for anyone. For young adults on the autism spectrum, it is even more complicated. “The reality series is well made. You see how real people with autism are supported by family and experts in their search for love,” says Huber. Although social interaction is difficult for people with autism, they too have a need for emotional and physical closeness and want to have relationships.” Netflix has just launched the second season. 

What causes autism?

The causes of autism are still not fully known today. One thing is clear: autism is not caused by parenting mistakes or family conflict. But biological factors seem to play an important role. According to ”Neurologen und Psychiater im Netz” (neurologists and psychiatrists online), if a parent has autism, there is a higher risk that their child will also have it. Generally, it is also assumed that brain development in people with autism spectrum disorder is different prenatally than in healthy children. The situation is exacerbated in the case of older parents and with certain risk factors during pregnancy, such as serious viral infections in the first trimester or serious bacterial infections in the second trimester.

The word “autism” comes from the Greek word “autos”, which means “self”. It was used in 1943 for the first time to describe children with a profound development disorder.

People with autism in disguise 

1 to 2% of people are autistic – many more than previously thought. In the past, inconspicuous forms were simply not recognised as such. Particularly with girls. “Although boys are more likely to be affected than girls, the difference is not as big as previously though. It was simply not as easy to detect the development disorder in girls, because they were more likely to be perceived as perfectionists, hard-working or shy,” explains Huber.

Today we know more about the disorder and are more aware of the symptoms. More specific questions are asked, and facial expressions, gestures and language use in interaction and communication are observed. However, some people on the spectrum still remain undetected, because they compensate and work hard to disguise their impairments. “It is not uncommon for these people to be permanently exhausted, unable to do anything besides work. Adults often suffer fits of rage, depression, anxiety or are suicidal. Many often lose their jobs.” 

That’s another reason why it is so important that those affected receive support at an early stage. “TEACCH (Treatment and Education of Autistic and related Communication handicapped Children) is a special education programme to help people with autism to more easily predict and understand daily activities and respond in appropriate ways,” says Huber. It is an internationally recognised concept for the educational support of people with autism and similar communication disabilities. The focus is on structuring daily life in space and time to help children with autism orient themselves better. Tasks such as getting dressed, brushing their teeth or clearing up their desk are visually represented with pictograms so that  autistic children learn to orientate themselves and complete tasks independently. 

The other side of autism

Often there is only talk about the problems that people with autism have to deal with in everyday life. However, people with autism also have strengths and are superior to others in many ways. For example, they are often honest and direct, see details very clearly and are interested in them. The “autismus deutsche schweiz” association explains that they see things and situations in detail before they see the whole picture. The advantage of this is that they find errors very quickly and can work precisely and to a very high standard. People with autism are also often highly talented and very creative.

They can focus on something for a long time without getting bored. Their interest in special fields is particularly pronounced. We’ve all seen it in films: people with autism can learn things off by heart, such as all the telephone box numbers of a country, all the names of bus stops or entire timetables. “An area of interest like this promotes familiarity. It allows people with autism to have more control over their environment, so they feel less at the mercy of it,” as Huber knows from his own experience. He himself delved into the world of dinosaurs, world maps and the distribution of raw materials, he was interested in temperature curves and spent hours reading up on the meaning of words in dictionaries. He is also fascinated by smoke detectors in rooms, astrophysics and body sizes. And of course: everything about autism.

For a long time, people tried to suppress these fixations in autistic children through therapy. In the past, it was said: “You mustn’t always talk about the same things!” Today, the special interest is interpreted positively and attempts are made to use it to further develop their interest in the world. There is also more awareness of autism today: “Everyone perceives the world differently. We think about or feel things differently. And that is OK.” We are now questioning perceptions that used to be taken for granted. Huber explains: “We ask ourselves: What do we need for everyone to feel more comfortable?” For example, there are increasing offers for cinema screenings for people with autism. Awareness is the top priority – for everyone: “Each of us is unique and has a right to see things in their own way.”