12 questions about autism
1. What are the causes of autism?
Autism spectrum disorders are mainly hereditary. Over 150 genes have been identified so far, which interact in various combinations. This interaction is so complex that researchers have not yet fully understood it.
However, having an autistic child does not necessarily mean that one of the parents is autistic. It is often the case that we find so-called autistic traits in one parent or close relative: abnormalities in social communication, interaction with people or inflexible behaviour patterns – but these are not so numerous or severe that they impair the person's participation in society and everyday social life.
Environmental influences primarily affect risk factors during pregnancy, such as viral infections in the mother or the use of certain medications. Assumptions that autism is caused by an emotionally cold upbringing or vaccines have been proven false.
Matthias Dose, autism expert, diagnostician and psychiatrist in Munich, member of the scientific advisory board of «Autism Germany"
2. Why are more boys diagnosed than girls?
Because the latter are often less noticeable. Girls and women are, presumably due to corresponding conditioning, often more socially competent than boys and men – this is no different for autistic people. Autistic girls are often better at identifying and imitating behaviours that are considered socially desirable. It is also likely that characteristics such as extreme shyness or withdrawal, which can be associated with autism, are more likely to be seen as feminine, whereas boys with the same characteristics might be perceived as strange.
Christine Preissmann, Asperger's syndrome sufferer, doctor and therapist specialising in autism spectrum disorders, Rossdorf (Germany)
3. How common are autism spectrum disorders?
Science estimates that 1% of the population is affected by an autistic disorder. Our specialist centre prefers a dimensional concept of illness rather than categorising people as autistic or non-autistic: the disorder is only diagnosed in people who display autistic characteristics more prominently than 99% of the rest of the population. Of course, those in the two or three percent range will also have autistic traits – without being diagnosed with autism – but these are less restrictive overall and therefore do not require quite as extensive measures.
When it comes to figures relating to children and young people, we need to actively put the brakes on, otherwise it will become inflationary.
Andreas Riedel, psychiatrist
We provide these individuals with therapies that include, but are not limited to, topics typical of autism. For research to be effective, diagnosis must not be arbitrary. We should stick to the one percent – which, incidentally, we are still far from diagnosing in adults in this country. When it comes to figures for children and young people, however, we need to actively slow down, otherwise it will become inflationary.
Andreas Riedel, psychiatrist and senior physician at the Centre for Autism Spectrum Disorders in Adults at Lucerne Psychiatry
4. At what age does autism spectrum disorder become apparent?
By definition, it always begins in early childhood. However, it may not become fully apparent until later, meaning that typical characteristics are not recognised as such for a long time. This may be because they also occur to some extent in the parents, who adopt behaviours that suit an autistic child. Or simply because families are very resilient, parents have developed a high tolerance for their child's idiosyncrasies and a sense of what they need in terms of structure or balance. They notice that their child perceives the world differently, without being able to describe it in detail.
If, in rural areas for example, the child is also supported by a small, family-oriented school, we tend to notice these issues late, usually only when social demands exceed their limited abilities and need for predictability, for example in higher grades, vocational training or university. This also applies to children who were not on the radar because they were very shy and quiet at school.
Charlotte Gwerder, child and adolescent psychologist, head of the Autism Centre at the University Psychiatric Clinics in Basel
5. How is autism diagnosed?
Autism is a clinical diagnosis. This means that there is no medical test that can rule out or confirm an autistic disorder with 100% certainty. Autism diagnosis is extensive and must be carried out in a differentiated manner. Among other things, it involves gaining an in-depth impression of the child's development to date. To this end, parents and other caregivers and specialists are interviewed according to standardised guidelines – about milestones, behaviour in early childhood and so on. Such interviews can last up to three hours.
Up to 80% of people with autism spectrum disorder have additional diagnoses.
Charlotte Gwerder, child and adolescent psychologist
This is supplemented by behavioural observations from an autism-specific perspective. With younger children, this takes place in a playful manner, while with adolescents it is mostly done through conversation. Special testing instruments make it possible to create different social situations in which autistic behaviours can be particularly easily identified or ruled out. Finally, clinical observations, interview and test evaluations, and descriptions provided by the child and their caregivers are incorporated into the assessment.
Matthias Huber, psychologist, long-standing diagnostician at the UPD University Hospital in Bern and now an expert at the counselling centre of the Kind & Autismus foundation
6. Are children with autism also more susceptible to other disorders?
Definitely. Up to 80 per cent of people with autism spectrum disorder have additional diagnoses. In childhood and adolescence, ADHD and ADD are the most common comorbid disorders, affecting 60 per cent of those diagnosed, and similar genetic constellations play a role in their development.
Overlapping gene clusters also exist in connection with susceptibility to obsessive-compulsive, anxiety or depressive disorders – autistic children are probably more at risk for the latter because they are under a lot of pressure to fit in and often feel like they're not good enough. Constant pressure and being overwhelmed in social situations can also lead to social anxiety disorders.
Charlotte Gwerder
7. What is meant by «masking» in relation to autism?
«Masking» refers to strategies that autistic people adopt to compensate for social difficulties. While non-autistic children learn and apply social cues intuitively, autistic children are unable to do so. They are told early on by their caregivers that they should look people in the eye when speaking. They will be told that a smile is part of greeting someone, and their peers will urge them to speak «normally.» The child is made aware of what socially acceptable behaviour looks like and tries, within the limits of their abilities, to internalise these rules.
When young children consume a lot of media, this can sometimes lead to behaviours that are typical of or similar to autism spectrum disorders.
Charlotte Gwerder, child and adolescent psychologist
For many autistic people, the result is what it is: learned and not very natural. Some develop sophisticated compensation strategies over time. At first glance, objective criteria for eye contact, gestures or voice control appear to be met – but on closer inspection, at least I as a diagnostician notice that the social fine-tuning is missing: the smile seems stereotypical, there is little variation in eye contact, gestures are not directed at me but seem to be aimed at nothing in particular, to give a few examples.
Andreas Riedel
8. What is meant by pseudo-autism?
When young children consume a lot of media, this can sometimes lead to behaviours that are typical of or similar to autism spectrum disorders. For example, they may engage in echolalia, repeating words and phrases that other people say – typically from television – in a repetitive and almost mechanical manner. They often prefer English, which they know from the media, before learning their own native language.
They are not only linguistically delayed, but also socially and emotionally. They appear autistic, but they are not: they lack social interaction, secure attachments and the associated learning stimuli. However, experience shows that they can make up for their developmental deficits if their media consumption is reduced and their parents receive appropriate advice.
Charlotte Gwerder
9. Who is meant by «high-functioning» autistic people?
The term refers to autistic people who are not affected by limitations in cognitive abilities or functional language. They therefore have average or above-average intelligence and are proficient in verbal language.
Matthias Huber
10. A new diagnosis is circulating on the internet: Pathological Demand Avoidance (PDA) refers to the refusal to comply with everyday demands and is being discussed as another form of autism. What is it all about?
PDA describes a behavioural profile of children or adults who react with aversion to everyday demands. However, to be clear: PDA is neither a scientifically recognised diagnosis nor a subtype of autism – it is primarily parents who demand this. PDA will not be an official diagnosis in the near future because there is no research on it. We have thousands of studies on autism spectrum disorders – and eleven international studies on PDA, which are considered to be of poor quality.
Inge Kamp-Becker, autism researcher, diagnostician and professor at the Clinic for Child and Adolescent Psychiatry at Heidelberg University Hospital
The three forms of autism
Early childhood autism is considered the most severe form of autistic disorder. Affected children show limitations in social communication from the first year of life: their language development is absent, delayed or only fragmentary. Abnormalities are also noticeable early on in social interaction: eye contact, facial expressions and gestures are reduced or not used to interact with people. Some affected individuals catch up in their language development, while others do not speak even as adults. The disorder also includes repetitive and stereotypical behaviour patterns – many children, for example, stand out due to constant rocking of the upper body or flapping of the hands. An almost compulsive adherence to habits is also typical. Early childhood autism is often accompanied by cognitive impairment and is diagnosed before the age of three.
Asperger syndrome also involves limitations in social communication and social interaction, as well as repetitive, stereotypical behaviour patterns. However, the linguistic and cognitive development of those affected is usually unremarkable in the first three years of life. Difficulties become apparent when they spend more time with their peers, for example in daycare or nursery school. There, children with Asperger syndrome often show little interest in other children and have difficulty interacting with them. During group activities, they appear uninvolved and withdrawn, or they rub people the wrong way because they do not respond to others and insist on their own rules – or react impulsively when someone questions them. Misunderstandings often arise when communicating with them: in addition to their literal understanding of language, which is typical for many, some have a monotonous or pedantic way of speaking. Children with Asperger syndrome also have difficulty deviating from their habits, and some of them have pronounced special interests that are atypical for their age and social context.
Atypical autism is interpreted differently in practice: while some experts interpret the term to mean that abnormalities are not present in all three reference areas – social communication, social interaction and repetitive, stereotypical behaviour patterns – or that these only appear later, others associate it with particularly severe intellectual impairments.
11. Can autism spectrum disorder be outgrown?
Absolutely. There are people whose symptoms are reduced so significantly over the course of their lives through learning experiences and successful treatment that they are practically undetectable. However, this is the minority.
In general, the course of the disorder is highly individual, and prognoses vary accordingly. They are significantly worse if a child does not learn to speak and also has cognitive impairments. However, it is also true that many more severely affected autistic children are learning to speak today than 20 years ago because targeted, evidence-based early intervention enables us to better promote the precursor functions of language, such as eye contact, establishing shared attention and the ability to imitate.
Inge Kamp-Becker
Autistic people are definitely capable of empathy – but you have to speak plainly so that they know what is going on.
12. Which myths about autism need to be dispelled urgently?
There are quite a few. For example, the claim that autistic people are incapable of empathy. They are capable of empathy – but you have to speak plainly so that they know what's going on. I remember a few years ago when a colleague said she was about to blow her top. I asked her about her travel plans, and she replied that she wasn't going on holiday, she was angry – only then did I understand and was able to ask her what was wrong.
Sure, I am less empathetic than others. But it is not true that I am not interested in other people's feelings – they just need to be expressed more clearly to me. What is fundamentally wrong is the assumption that people with autism do not want social contact, friends or partners. The vast majority of people I have met want such relationships – but unfortunately often fail to establish or maintain them.
Christine Preissmann
