Autism: What's behind the boom?

It could have been a leaf that had fallen from the tree that caught Matthias's attention. The boy turned it over and over, studying it intently. He seemed lost in thought – something his father had noticed early on. How was it possible for a child to spend so much time on one thing?

In the evenings, Matthias arranged the objects in his room according to the same pattern every time, otherwise he couldn't sleep. When his mother said they would leave for shopping in five minutes, Matthias became upset if it turned out to be seven minutes. When people told him to pay attention, he would sometimes bury his head in his arms, and he would look away during conversations. He could concentrate better on what was being said if he blocked out the twitches coming from the other person's face: facial expressions distracted him.

When playing football, Matthias only saw the ball, not the children behind it.

Matthias couldn't figure out the rules of other kids' games. «You could play with them,» his mum or teachers would suggest. But what did playing mean? Sitting down or standing around? What activities and movements should he do? In the end, Matthias usually just did what he liked best: he made mosaics with coloured blocks and stared at them.

He joined in climbing trees, up and down, and playing football, because one thing was clear: the ball had to go in the goal. Matthias always had to ask which goal. When he ran, he only saw the ball, not the children behind it. It was as if a foggy haze had swallowed them up.

Under constant tension

At school, Matthias was considered quiet. In his head, however, it was loud, with sensory impressions raining down on him like a drumbeat. When the teacher said something, he often did not understand what was meant or who was being addressed. So he imitated what the others did. This continued until he started vocational training.

Because his mother had often been in hospital and he was familiar with that environment, he initially decided to go into nursing. Matthias liked the fact that this profession was highly regulated: medical procedures, how to handle patients, everything involved in their care. The human factor remained a challenge.

«As a child and teenager, I was under constant stress,» says Matthias Huber today. He was in his mid-20s when a career counsellor advised him to seek medical advice – his behaviour seemed autistic. It turned out that there was a name for what had earned Matthias Huber a reputation as an oddball: he had Asperger's syndrome, a form of autism.

Now 57, he knows autism not only from the perspective of someone affected by it. As a psychologist, he worked for many years in diagnostics at the University Hospital UPD in Bern. Today, he contributes as a consultant and speaker to helping people with and without autism better understand the world of «others.»

What's going on?

In the 1980s, autism affected 1 in 1,000 people; today, depending on the data source, it is estimated to affect 1 in 80. At the Psychiatric University Hospital in Zurich, autism assessments in children and adolescents have doubled in the past four years, with a similar increase in related inquiries at the University Hospital in Basel.

The Intercantonal School for Special Education also states: «In recent years, suspected diagnoses of autism have become increasingly common in schools. Together with ADHD, autism is the most common suspected diagnosis in the area of behavioural problems. Surveys show that the number of people affected has increased significantly over the last 40 years.»

This development follows an international trend that is particularly pronounced in highly developed urban areas: according to a study published in the journal Pediatrics, the number of autism diagnoses in the New York and New Jersey region rose by up to 500 percent between 2000 and 2016.

What is going on? Or, to start at the very beginning: what exactly is autism? Is it a disease, a mental illness or a social deficiency? Or even a superpower, as the media sometimes suggest? Why do we talk about autism as a spectrum today? How do the associated characteristics manifest themselves, and what criteria does science use to diagnose autism? Is autism a fashionable diagnosis? This dossier explores these and other questions.

The autistic brain

Neurodiversity is a popular buzzword in connection with autism. The term refers to the fact that the autistic brain works differently. What makes it special? «We assume that a genetically modified code in the foetus leads to different brain development,» says Inge Kamp-Becker, professor at the Clinic for Child and Adolescent Psychiatry at Heidelberg University Hospital. «This particularly affects the neural connections between areas of the brain responsible for processing social stimuli.»

Studies have shown that connectivity between widely separated areas of the autistic brain is reduced, while connectivity between neighbouring areas is stronger: «This is why some people with autism have a remarkable memory and an eye for details that others miss.»

The various forms of autism differ greatly from one another. This is where the term «spectrum» comes from.

However, the excessive focus on detail means that the bigger picture is lost – as in the case of Matthias Huber, who only saw the ball and took no notice of the children chasing it. Or like autistic toddlers who focus on individual parts, such as the wheels of a toy car, without seeing the car as a whole.

«In order for us to recognise higher-level connections, such as decoding communication signals, distant areas of the brain must work together effectively,» says Kamp-Becker. Examples include the frontal lobe and the amygdala in the midbrain. While the former plays a key role in self-regulation, planning and emotional control, the amygdala is involved in the formation of emotions.

It links these with memories and influences how we emotionally evaluate sensory stimuli, such as assessing danger. «If the connection between the frontal lobe and the amygdala is impaired, people face challenges that are typical of autism,» says Kamp-Becker. «They find it difficult to interpret facial expressions and gestures and have trouble assessing emotions or social cues.»

A complex disorder

Autism is associated with a whole range of neurobiological abnormalities that can impair the development of cognitive abilities and functional language. «Just under half of people diagnosed with autism have intellectual disabilities,» says Kamp-Becker. «The others have average and, in some cases, very good cognitive abilities.»

The same applies to language: some people never learn to speak, or only learn to speak brokenly, while others have no problems in this regard. Or less drastic examples: their limited language processing skills manifest themselves, for example, in the fact that they take language literally and do not understand idioms, figurative language or irony.

Autism manifests itself differently in each case, but there is a common denominator: communication and interaction with the social environment are impaired, the interests and activities of those affected are limited, and their behaviour is often characterised by a desire for fixed routines and repetition.

«The quality and intensity of symptoms vary from person to person,» says psychologist Huber. «For some, normal everyday life is impossible, while others appear largely unaffected at first glance.»

Pigeonholing has had its day

Because the disorder is so complex, modern medicine has introduced the term autism spectrum, which makes it clear that symptoms vary, transitions are fluid and categories are not very helpful.

«We talk about autism spectrum disorders because we know that the condition encompasses a range of developmental disorders that have similar neurobiological causes but vary greatly in their severity,» says Alain Di Gallo, Director of the Clinic for Children and Adolescents at the University Psychiatric Clinics in Basel.

If personal accounts are given greater weight than clinical observations, this can be problematic.

Matthias Dose, psychiatrist

«Today, we can medically classify less obvious symptoms and help those affected who would previously have been labelled as strange.» Take Matthias Huber, for example: when he was a child, the diagnosis only applied to those with early childhood autism, the most severe form of autism spectrum disorder. It was not until 1993 that the World Health Organisation (WHO) included Asperger syndrome and atypical autism as further subtypes in the International Statistical Classification of Diseases (ICD).

Although the threecategories of autism are still in use, they will soon be obsolete in diagnostics. In the eleventh edition of the ICD, the WHO summarises them under the umbrella term autism spectrum disorder (ASD). The WHO now differentiates between autistic disorders according to whether and to what extent intelligence and functional language are impaired, and also takes sensory characteristics into account.

Plenty of room for interpretation

The ICD-11 came into force in 2022, but member states have at least five years to adapt their healthcare systems. In Switzerland, diagnosticians in some places are already using the ICD-11 to classify symptoms, but billing is still based on the old category system.

Although experts agree that a spectrum is better suited to understanding autism than pigeonholing, there is also criticism of the new classification system. «The ICD-11 allows for a very open interpretation of autism,» criticises psychologist Kamp-Becker.

«For example, it does not explicitly require that impairments be present in all three reference areas – social interaction, social communication and repetitive, stereotypical behaviour patterns. There are no guidelines on how many abnormalities must be present in each area. This leaves a lot of room for interpretation. To put it bluntly, there is something for everyone who comes into contact with child and adolescent psychiatry.»

«Even a spectrum has limits»

German psychiatrist and autism expert Matthias Dose shares this concern: «We are moving away from visible abnormalities towards subjectively perceived symptoms that are difficult to objectively measure. If personal descriptions are given greater weight than clinical observations, this is problematic. Even a spectrum has its limits.»

There are various reasons for the sharp rise in autism diagnoses, according to Charlotte Gwerder, head of the Autism Centre at the University Psychiatric Clinics in Basel. The child and adolescent psychologist says that it is not only improved diagnostics, which now include milder forms of the disorder, that play a role: «Raising awareness among professionals and the general public is key. Not only are paediatricians and teachers now better informed about the signs, but parents are also more likely to consider autism as a possible explanation when their child's behaviour raises questions.»

The destigmatisation of autism often does not mean recognition, but rather the denial of a medical disorder.

Inge Kamp-Becker, psychologist

In addition, there are now more trained professionals who can recognise autism spectrum disorder, which would have gone unnoticed ten years ago: «What used to be classified as mental disability is now often revealed on closer inspection to be early childhood autism.» This severe form of the disorder affects 25 to 30 percent of all people with autism.

«However, there has been hardly any increase in diagnoses in these cases,» states the Federal Report on Autism Spectrum Disorders. «On the other hand, an increase can be seen among children who are less severely affected.»

Ten billion views per day

The media play a key role in raising public awareness. From Rain Man to The Big Bang Theory to Dr House, over 30 films and TV series featuring autistic characters have helped raise awareness of this disorder. «These contributions have shaped many people's views on autism,» says psychiatrist Matthias Dose.

«Once, students here in Munich asked passers-by what they thought about autism. The most common answer was: they are quirky but highly gifted people. The image of autism is mostly positive.»

Media coverage has contributed greatly to destigmatisation and raising awareness, says Dose: «That's the positive effect.» The downside is that, on the one hand, many formats convey a clichéd image of autistic disorders, such as the nerd with savant skills, while on the other hand, symptoms are interpreted so arbitrarily that almost anyone can identify with them.

You don't feel like making small talk or have an eye for detail, you rock your upper body to calm yourself down or complain about sensory overload: there are numerous posts circulating online in which people who describe themselves as autistic describe their experiences.

«In 2023, researchers recorded ten billion views on TikTok in a single day on the topic of autism,» says Dose. «I'm not surprised that more and more young people are actively seeking this diagnosis because some influencers use it to emphasise their uniqueness. I have never experienced anyone insisting on having an obsessive-compulsive disorder or psychosis – but it does happen that people accept an autism spectrum disorder as the only explanation for their psychosocial problems, even if it has been ruled out after careful diagnosis.»

Disorder or superpower?

The internet is a poor source of reliable information on autism, researcher Kamp-Becker found when evaluating over a hundred online sources: «Particularly problematic is the lack of distinction between autism and other disorders. Many symptoms associated with autism also occur in connection with other conditions. This fact is completely overlooked.»

This means that young people, but also parents, often already have a preconceived idea of what autistic behaviour looks like: «Mothers and fathers may find it suspicious that their child sorts things or has difficulty dealing with changes to plans. I have to carefully clarify how parents interpret such symptoms. Many children like to sort things. The question is: to what extent are other things possible besides sorting?»

I consider autism to be a disorder. We should call it what it is.

Christine Preissmann, doctor with Asperger syndrome

Meanwhile, the number of celebrities who claim to have autism and describe it as a superpower is growing. Psychologist Kamp-Becker says that this destigmatisation is a double-edged sword: «Because it does not recognise autism as a medical disorder, but rather denies it. More and more young people are coming to my practice who have discovered an autism spectrum disorder as part of their identity. They say: «This is the answer I've been looking for, it makes me feel better.» In many cases, however, I have to explain to them that the cause of their problems is not autism, but something else.»

Downplaying the issue harms those affected

«Autism is not a disability, it's a different ability» is a widely shared saying that means autism is not an impairment, but a special ability. What medicine describes as limitations – problems with social interaction or language comprehension – are interpreted by the so-called neurodiversity movement as strengths of character: autistic people are authentic and direct, it is said, they cannot lie and have no interest in shallow conversation.

Christine Preissmann, a doctor and autism expert with Asperger syndrome, believes that this trivialisation has nothing to do with the reality of many of those affected: «I wouldn't describe myself as neurodiverse. I have always been impaired. Every day is a challenge because, despite regular routines, unpredictable things happen. I have been in psychotherapy for over 25 years and also rely on the help of an occupational therapist. I see autism as a disorder. We should call it what it is, because there is no help available for neurodiversity.»

Challenges in diagnostics

Is autism becoming a fashionable diagnosis? «The longer it goes on, the more it does,» says child and adolescent psychologist Kamp-Becker. «Some parents are almost insisting on it. Possibly because the diagnosis is less stigmatising, is not associated with parental behaviour and is linked to support services. If we do not confirm the diagnosis of autism at the university hospital, some parents try to get it elsewhere.»

«Help and support should be given to those who need it,» says Charlotte Gwerder from Basel University Hospital. «That's why we adhere to high standards in diagnostics. I believe this applies to all Swiss university hospitals.»

Calmness instead of alarmism

According to experts, the greatest difficulty in diagnosing autism is differential diagnosis, i.e. distinguishing it from other disorders with overlapping symptoms. «Especially in borderline cases,» says Gwerder, «special training and a great deal of experience are needed to correctly identify the symptoms.» However, the training that Gwerder and her team at the University Hospital have undergone is not a prerequisite for offering autism assessments.

«There are certainly specialists who do such good work because they have a trained eye thanks to their experience,» says Gwerder. «But given the current developments, I think it would make sense for anyone involved in diagnostics to complete this special training. However, this is a controversial issue.»

Even what we call normality covers a broad spectrum. We should not forget that.

Charlotte Gwerder, psychologist

According to Gwerder, the pressure on assessment centres is enormous: «If criteria are interpreted so arbitrarily online, parents and teachers lose sight of what is still normal.» Awareness is increasingly turning into alarmism: «We see this problem not only in connection with autism spectrum disorders, but it is particularly pronounced there.»

Focus on disruptions is getting out of hand

As a result, schools increasingly requested autism assessments. «We place great importance on their observations,» emphasises Gwerder. «Some of them are very detailed.» Schools did not want to miss anything, and an autism diagnosis also meant less pressure on staff.

«There are autism checklists in circulation that schools have drawn up themselves,» says Gwerder. «Such efforts are well-intentioned, but delicate. It seems to me that the focus on disorders is getting out of hand. For years, it was rightly said that autism was neglected and underdiagnosed. Now it's almost tipping over into the opposite.»

The child and adolescent psychologist would like to see things calm down. She wants people to remember what is often forgotten: «The fact that even so-called normality covers a broad spectrum – and that a great deal is possible within the context of normal child development.»