How do autistic children experience the world?

Many people on the autism spectrum are misunderstood and underestimated in their communication every day, as the following example shows: The father of an autistic girl told a group counselling session about an experience that was bothering him: he recently spoke to his daughter about her deceased grandmother. She was happy in heaven, he said. She was now free.

«Can I flap my hands when I'm in heaven?» the girl then asked. The father realised how much his child was suffering from the fact that his way of expressing excitement or joy was constantly being suppressed.

There are autistic people all over the world and in all cultures. The numbers have risen considerably over the last 20 years. A phenomenon that is mainly attributed to a combination of improved diagnostic methods and increased awareness of the issue in society. Today, it is estimated that an average of 1 per cent of the population in Europe lives on the autism spectrum.

Autism is hereditary. However, several hundred genes play a role in this.

Switzerland currently has a population of just under nine million. Statistically speaking, there are almost 90,000 autistic people among them, around 17,000 of whom are children and adolescents. This is a rough estimate that cannot be substantiated exactly. What is clear, however, is that many people in Switzerland live with autism - whether diagnosed or not, whether affected themselves or as a mother, father, sister, brother or partner.

The causes of autism are complex

Autism continues to pose new mysteries for science. For over 50 years, brain and genetic researchers have been searching for diagnostic features and causes in order to find a specific biological or genetic trigger for autism.

However, the causes have not become clearer, but increasingly complex. To date, no single biological or genetic trigger for autism has been found. However, we do know that autism is hereditary. If one parent is affected, the probability increases that the child will also be on the spectrum. However, several hundred genes play a role in this.

Avoiding eye contact can be just as much a sign of autism as very intense eye contact.

It is also clear that different forms of autism cannot be precisely differentiated from one another. Known diagnoses such as «Asperger's» or «early childhood autism» are no longer listed separately in the World Health Organisation's latest International Classification of Diseases (ICD-11).

The changes are based on the realisation that previous classifications were often arbitrary and inconsistent. Differences between the various diagnoses often lay in the severity of the symptoms rather than their nature. Different categories of autism are therefore now summarised under a single umbrella term: Autism Spectrum Disorder (ASD).

The autism spectrum

The term autism spectrum reflects the diversity and fluid transitions between different manifestations. «Not looking others in the eye» can be just as much a sign of autism as «looking others very intensely in the eye».

One child with autism doesn't want to be touched, another clings to their carer and doesn't want to be let go. One child stands out because it walks on tiptoe, flaps its hands or makes noises, while another behaves absolutely inconspicuously. In short: if you know one autistic person, you know exactly one autistic person.

Many autistic people feel most comfortable when processes always follow the same pattern.

The autistic actress Tashi Baiguerra describes the spectrum not as a line from «mildly autistic» to «severely autistic», but as a colour spectrum of autistic characteristics. Everyone on the autism spectrum experiences autism differently and exhibits varying degrees of the spectrum. This is hardly visible from the outside.

Characteristics of autism

Nevertheless, people with autism have things in common: They process sensory impressions differently to so-called neurotypical people. Some perceive sounds much more strongly or as a jumble that is difficult to disentangle. The visual world can quickly become overwhelming and fragmented. Skin contact with certain materials can also trigger strong feelings. Autistic people often find it difficult to block out such external stimuli.

This affects how they perceive the world and therefore how they react to their environment and other people. Social interaction and communication are associated with difficulties for most autistic people.

Another characteristic of autism is repetitive patterns of behaviour, interests or activities: Many autistic people feel most comfortable when routines always follow the same pattern. Some are interested in very specific topics to which they devote themselves intensively or with great focus.

Is autism a disorder?

Jonathan Green, Professor of Child and Adolescent Psychiatry in Manchester, speaks of a crisis in the understanding of what autism actually is. In the eyes of medicine, autism is a «profound developmental disorder». It has far-reaching effects on the development of communication, on social interaction and on people's behaviour.

People on the autism spectrum want people to talk to them more and not about them.

In the eyes of a growing number of people on the autism spectrum, autistic brains simply develop differently. They demand that autism should no longer be pathologised. Autism is not a disease and therefore cannot be cured. They see their «neurodiversity» - their diversity of thought - as part of the colourfulness of society.

5 positive aspects of autism

1. exceptional ability to concentrate

Many people with autism can concentrate very intensely on certain interests or tasks. This ability to hyperfocus enables them to develop in-depth knowledge and skills.

2. detail orientation

Some autistic people have a keen eye for detail. This ability is particularly advantageous in professional fields that require precision, such as data analysis, art, programming and science.

3. strong memory

People with autism often show an impressive memory, especially in areas that interest them greatly. This can range from historical data to very specific interests.

4. honesty and directness

Many people with autism are known for their direct communication. They often say exactly what they think and their communication is free of social lies. In many situations, this honesty is perceived as refreshing.

5. unique problem-solving skills

Autistic people often think differently to non-autistic people, which can lead to creative and innovative solutions. The ability to look at problems from a different perspective is particularly valuable in creative and analytical professions.

Some children are very good at concealing their autism, especially in a school context.

People on the autism spectrum want people to talk to them more and not about them. According to Green, this demand is entirely justified. Many treatment methods have been developed without taking their experience into account. These include practices that are intended to train away autistic behaviour, such as the hand flapping mentioned at the beginning.

Such «treatment» may help parents who are embarrassed by this behaviour in public. However, it removes the autistic child's ability to regulate themselves when they are upset. Some people completely reject the term «treat» in relation to autism.

Challenges with an autistic child

Anyone who has ever experienced a child who is beside themselves with despair because there is spiral pasta instead of croissants, because the packaging of their favourite yoghurt has a new design or because the bus has to take a diversion will now say: «They're good at talking!». Daily situations in which the smallest change triggers a huge tantrum lead some families to the brink of exhaustion.

Esther Kievit, psychotherapist and psychological-therapeutic director at the Fias Therapy Centre at UPK Basel, knows such scenarios well. When an autistic child's demands get so out of hand that the whole family is focussed solely on their needs, countermeasures are needed.

«Many parents are unsure whether their child understands them when they demand something of them,» she knows from many years of experience. Parents often need support in setting boundaries and working out what they can and cannot expect from their autistic child. «A child doesn't have to jump on the trampoline at three o'clock in the morning - just because it's fun now,» says Kievit.

When it comes to food in particular, she observes that many parents organise routines exactly as the child wants in order to avoid conflicts. There are families in which half of the luggage for a holiday trip contains special food for the autistic child. It is also particularly stressful for families when a child injures themselves or hurts their parents or siblings.

Don't treat autism, understand it

An official autism diagnosis is very important so that children and families receive the necessary specialised support. In Switzerland, treatment for children diagnosed with an autism spectrum disorder is covered by disability insurance (IV). This means that families do not have to bear any costs.

Nevertheless, the aim is not to treat the autism itself, but to understand together what the child is trying to say with their behaviour. In this way, stress factors in the entire family system can be recognised and reduced step by step.

Another major challenge for autistic people and their families is «masking». This is the term used to describe the concealment of autistic characteristics in order to better adapt to social norms and avoid rejection.

The aim should not be to change autism, but to enable those affected to develop as positively as possible.

Some children are very good at concealing their autism, especially in a school context. All the tension of the day is then unloaded at home or manifests itself in severe psychological stress. The SRF report «Autism and school» shows an impressive example.

How do autistic people find their place in the world?

Supporting autistic children in everyday life

Stress in people on the autism spectrum has a lot to do with sensory overload and a lack of orientation. These measures can help:

• Create structured daily routines: Those affected benefit from predictable and structured daily routines. They give them security and orientation. A clear structure helps to reduce anxiety and makes everyday life more predictable.
• Minimise sensory overload: Many children on the autism spectrum are particularly sensitive to sensory stimuli. A calm and low-stimulus environment helps to avoid overload and increase well-being.
• Schedule regular breaks: Regular breaks in the daily routine help to avoid overwork and exhaustion. Rest periods allow the child to recover and reduce stress before tackling new tasks.
• Provide emotional support: It is important to create a supportive and understanding environment. Listening empathetically and verbalising feelings helps an autistic child to cope with strong emotions.
• Get informed and get help yourself: exchanging ideas with other people affected and learning more about autism strengthens self-efficacy. The Autism Forum Switzerland is a place for this. You can find specialist centres, experts and further help in your canton here.

Early support is important

We now know that early interventions in families with autistic children under the age of three have a significant, positive impact on their development. The human brain is particularly malleable in the first three years of life. Accordingly, the environmental experiences of a toddler with an autism diagnosis are particularly formative during this period.

Jonathan Green describes the autism spectrum as a complex way of adapting to the environment. Autism develops in the interplay between a special, hereditary type of brain development and environmental experiences.

For this reason, an amendment to the Federal Disability Insurance Act was submitted for consultation in Switzerland in September 2023 to improve the cost coverage of intensive early intervention for young children with an autism diagnosis.

A more understanding society is needed

People on the autism spectrum are more vulnerable than neurotypical people due to their sensitivity. According to English studies, around 70 per cent of autistic people develop a mental illness in the course of their lives , compared to around 25 per cent of the general population. The aim of professional support should therefore not be to change autism, but to enable people on the autism spectrum to develop as positively as possible.

Swedish journalist Clara Törnvall argues in favour of a different way of dealing with autism in society. Autistic people have always existed. The diagnosis only emerges in the confrontation with the environment: «The more conformist society becomes, the more clearly different individuals stand out.»

The inner world of autistic people is usually much more complex than we realise from the outside. The Japanese boy and bestselling author Naoki Higashida puts it like this in his book «Why I can't look you in the eye»: «Not being able to speak doesn't mean I have nothing to say.»