«Refusal is not the same as autism»

Ms Kamp-Becker, how does autism spectrum disorder manifest itself?

It does not happen in secret. Autism is an observable disorder and manifests itself through basic abnormalities in eye contact, facial expressions and gestures, but also in terms of affective resonance, i.e. a person's emotional response to the feelings of others. All of these are reduced in people with autism.

Even as infants , they lack the social orientation that babies normally display by making eye contact or attempting to imitate facial expressions through social smiling. In retrospective surveys, parents report early signs of this, which they notice early on, especially if there are older siblings.

A child with an autistic disorder points to an object but does not make eye contact with the caregiver. This is one of the most consistent early symptoms.

We know that these abnormalities remain relatively stable over the course of development and are not as strongly influenced by intelligence or maturation as other developmental deviations. These symptoms occur in combination with repetitive, stereotypical behaviours that are so intense that they interfere with everyday life.

When it comes to such fundamental anomalies, clarification should be provided quickly.

As an experienced diagnostician, I can actually assess relatively quickly where there is no autism spectrum disorder: if I don't see anything, there is most likely nothing there. It becomes complicated as soon as there are possible indications. This is because many symptoms that can occur in autism also occur in other disorders. If a child is very restless, has attention deficits or increased impulsivity, I may first have to consider ADHD.

And then?

The first step is to treat these symptoms, instruct the parents accordingly and then check again later: Are there still any signs that could indicate autism? The same applies if a child displays anxious or oppositional behaviour – refusal does not necessarily mean autism. A gradual process of elimination is often necessary.

Based on extensive data, we have researched the most important characteristics that distinguish autism spectrum disorder from other conditions. Our aim is to provide general practitioners and paediatricians with a tool that will help them train their eye and better assess when an autism assessment is indicated.

What are some possible warning signs?

Let's take eye contact as an example. It is less about whether a child looks at you or not, but rather how they use their gaze to control social interaction. If an object catches the interest of a one-year-old child, they will point to it – and look at their caregiver to make sure that they also see the object. The absence of this shared attention is one of the most reliable early signs of autism. A child with an autistic disorder will point to the object but will not make eye contact with their caregiver.

How do abnormalities manifest themselves in older children?

For example, the child looks at me but does not react when I start looking at my watch constantly – it does not register these signals as a sign that a change of speaker would be appropriate, for example. There is also a lack of fine-tuning in eye contact, which people without autism intuitively adjust to each other.

You don't look continuously, but look away from time to time, letting your gaze wander briefly before returning it to the other person. Children with autism lack this coordination. They appear uninterested because they break eye contact where people without autism would maintain it, or they irritate their conversation partner because they stare at them or seem to be staring into space. They also use facial expressions and gestures very little.

Unfortunately, when the symptoms are less classic, the correlation is not as good.

What are you looking for?

If a child does not like something, does it direct its facial expressions towards the person it is interacting with? Or does it look angry or sad, but look somewhere else? To what extent does it use gestures as a means of communication? We ask children with good language skills to perform a pantomime, among other things.

People with autism tell stories without using gestures and do not grasp social and emotional aspects of the content in a manner appropriate for their age. In general, their eye contact, facial expressions, gestures and language do not appear coordinated. Because they find it difficult to interpret these forms of expression and their nuances in others, they also have trouble adapting the content of their conversation or their manner of speaking to their conversation partner. This makes it difficult to initiate and maintain conversations. What all autistic people have in common are problems with what is known as theory of mind.

In other words, limited ability to empathise with other people.

Exactly. This is a core issue that we are trying to identify through standardised behavioural observation. With younger children, this often happens through play. For example, children with autism often show a reduced ability to engage in interactive role play – they cannot «pretend». We also look at picture books with children that deal with friendship, conflict or feelings. It is important not to guide the child in any specific way.

What does that mean?

When I point to a crying face and ask how the person is doing, many autistic children have the cognitive concepts to know that someone who is crying is sad. Therefore, we do not point out these aspects, but simply observe. With older children and adolescents, the diagnosis involves a lot of conversation, where we look at the extent to which reciprocity or the ability to make small talk is present.

How common are misdiagnoses?

That is difficult to assess. Clinical diagnoses are based on behavioural observations, so it depends on how the criteria for the disorder are interpreted. Studies have been conducted to determine the extent to which experts from different clinics agree when they are asked to assess whether there is suspicion of an autism spectrum disorder based on records of behavioural observations. In severe cases, there is a high degree of agreement – unfortunately, when the symptoms are less classic, the agreement is not as good.