“Social contact can scare people with autism”: in order to sensitise the public to the topic of autism, the agency Ruf Lanz, Zurich, has developed a long-term campaign on behalf of Autismus Forum Schweiz. These include the two ads on this and the following page.
The subject of autism makes feelings run high: some see it as a serious illness, others simply as being different. Kai Vogeley understands both perspectives. The psychiatrist has been addressing the subject for years – at Jülich as a researcher and at the University Hospital of Cologne both as a doctor and as director of the outpatient clinic “Autismus im Erwachsenenalter” (Adult Autism).
We do it regularly without thinking about it: giving somebody a hug. We know intuitively when the time is right, how long the embrace should last and how close we can get to each other, whether we are comforting the other or just being friendly. “During a hug, we constantly send and receive non-verbal signals via eye contact, facial expression and the distance to the other person. This takes place without thinking – like a continuous, invisible data stream in the background,” explains Kai Vogeley. The professor of psychiatry and psychotherapy heads the special outpatient clinic “Autismus im Erwachsenenalter” (Adult Autism) at the University Hospital of Cologne and the study group “Social Cognition” at the Institute of Neuroscience and Medicine (INM-3).
Image above: “Social contact can scare people with autism”: in order to sensitise the public to the topic of autism, the agency Ruf Lanz, Zurich, has developed a long-term campaign on behalf of Autismus Forum Schweiz. These include the two ads on this and the following page.
People with autism find it difficult to perceive this “invisible data stream”, to interpret the feelings of their fellow human beings and to react appropriately. A hug makes them anxious and often causes stress and discomfort. This does not mean that the person has no feelings, however, but that it is very difficult for him or her to identify and communicate them. People with autism cannot decipher nonverbal communication messages. This can perhaps be compared to a text of which we are only allowed to read every tenth line. The content would probably not be accessible to anyone. No wonder, then, that there came a day in the office when a person with autism stood before Vogeley and asked him for instructions on how to hug. “Since then, I’ve seen hugs from a new perspective. It’s like a complicated grammar,” says Vogeley.
An estimated 1 per cent of people worldwide live with autism. Accordingly, 800,000 women and men are affected in Germany alone. The exact causes of autism are still unclear. It is agreed in research that there is no universal cause for autism and that hereditary factors play a crucial role. “But it remains unclear which and how many genes are responsible,” says Vogeley. Some scientists assume 100 genes to be involved, others thousands – the human genome comprises 25,000 genes.
The diagnostic manual of the World Health Organization (WHO), the International Classification of Disease (ICD), defines autism as “a pervasive developmental disorder”. These include forms such as childhood autism, atypical autism and Asperger syndrome. In Germany, statutory health insurance physicians are obliged to make their diagnoses according to the ICD classifications. What somehow sounds like black and white or sick and healthy keeps causing dissatisfaction, discussions and misunderstandings among physicians as well as those affected. “It is factually correct to describe autism as a genetic disorder of the nervous system,” admits Vogeley. But from his many years of experience in the outpatient clinic, which has existed since 2005, the psychiatrist knows that the truth is unique for each person: “Among the people with autism who come to me are those who lead successful lives: teachers, nurses, psychologists, insurance brokers. Although they notice that they react differently from their fellow human beings in certain situations, they can handle it well and only need a diagnosis in order to be able to make things clear to themselves,” says the doctor. These people have both feet on the ground and have found a way for themselves and their environment to handle their ways of thinking and living. “So it’s hard for me as a doctor to call these people ill,” says Vogeley.
The term “autism” comes from the Greek word “autos”, which means “self” or “pertaining to oneself”.
In 1943, an American by the name of Leo Kanner (pictured) was the first to describe the symptom of childhood autism as a subgroup within childhood schizophrenia. The autistic children he examined fended off any contact, did not speak or only in a peculiar way and were extremely concerned with the sameness of their environment. Kanner’s diagnostic criteria for determining this unusual behavioural disorder are still of importance today. Independently of Kanner, the Viennese paediatrician Hans Asperger simultaneously described a similar phenotype and called it autistic psychopathy.
It is different with those who tell him that they are not well, cannot cope with everyday life, have no friends and can no longer go to work. According to Vogeley, 40 to 50 per cent of autistic people suffer from depression. They know that they think and feel differently and are persistently working on themselves in order to meet the common social expectations and to function properly – often with enormous effort and often in vain.
Not everyone needs help
“These people urgently need support,” as Vogeley sums up. And then there are also those who come to see the doctor hoping that the diagnosis of autism could explain their peculiar behaviour. “But: someone who only develops peculiarities at the age of 15 or 16 may need help, but does not have a profound developmental disorder,” the researcher puts it straight. He diagnoses autism in only about one third of his patients. Therefore, the doctor has already met people who have complained that they did not get the diagnosis.
Vogeley and his Jülich study group are investigating the extent to which non-verbal communication has a measurable influence on brain activity. For example, the scientists have conducted a study on the “social look”: how do people with and without autism interpret the gaze of a counterpart? A virtual character was used that communicates using neither speech nor body language, but simply looks at the test person. Only the gazing time of the virtual character was changed – up to a maximum of four seconds.
“We were able to show that in people without autism, the sympathy for their artificial counterpart increased with the duration of the gaze,” says Vogeley. In them, the “social brain” is activated, that is, those brain areas that are responsible for experiencing compassion and social interaction. The imaging method of functional magnetic resonance imaging (fMRI) was used to record brain activity. “In people with autism, on the other hand, the measurement curve in the ‘social brain’ regions remained flat. The lack of response can be interpreted as a neurobiological indicator that the people affected find it harder to intuitively interpret the feelings and intentions of others,” explains Vogeley.
“Among the people with autism who come to me are those who lead successful lives. So it’s hard for me as a doctor to call these people ill.”
Kai Vogeley, professor of psychiatry and psychotherapy
In addition, the so-called social motivation of people with autism may be reduced. “This would mean that people with autism might find social contact less interesting and less amusing or entertaining. However, this is only a guess so far,” the scientist emphasises.
The people at Jülich are also interested in the gender distribution in the diagnosis of autism: are more boys or girls affected? In children with Asperger syndrome – that is, autism in which those affected have an IQ higher than 70 – there are up to ten boys per girl, while in adults there are only about two men per woman. Genetics cannot explain this phenomenon. “At the moment, we’re assuming that girls are underdiagnosed. Obviously, they’re better at adapting and at attracting less attention,” explains Vogeley. “Camouflage” is the technical term. The study results of the Jülich researchers also confirm this.
Curable or not?
According to current understanding, autism cannot be cured. Therapeutic and educational encouragement and support, however, help to achieve positive changes. For example, Dr. Jürgen Dukart from INM-7, another section at the Institute of Neuroscience and Medicine, and colleagues from Switzerland, the Netherlands and Great Britain have discovered certain repetitive activity patterns in the brain that only occur in people with autism. This consistent pattern of so-called functional connectivity could be used in the long term as a biomarker for future therapies.
The idea: in the future, physicians could use medicines to shift the brain pattern towards a “healthy” pattern, thus improving the state of health. “The results of the study, which includes more than 800 autistic patients in four cohorts, could contribute to optimising existing forms of therapy or to finding new treatment options,” sums up Dukart. Even if there are many people with autism who are critical of research and believe that they are different indeed, but healthy nonetheless, science must not lose sight of those people who cannot cope with autism in their lives.
Jürgen Dukart has discovered activity patterns in the brain that only occur in people with autism.
Autism spectrum disorder – an overview
The WHO’s diagnostic manual (ICD 10) currently applies in Germany, in which autism is defined as a pervasive developmental disorder. Three main forms are distinguished. The ICD 11, which is due to take effect in 2022, is meanwhile being prepared, according to which there will only be one autism spectrum disorder with varying degrees of severity – as has already been the case in the DSM-V classification system of the American Psychiatric Association published in 2013.
Childhood autism, or Kanner syndrome, is a form of autism in which language development is delayed or absent altogether and mental retardation can exist. People with childhood autism have the typical characteristics that all people in the autism spectrum have in common: difficulties in social communication and interaction, limited interests, repetitive behaviour.
For some, people with Asperger syndrome are prodigies by cliché, for others, they are not able to lead an independent life. Although people with Asperger syndrome often develop special interests, this does not make them exceptional talents. They find it difficult to deal with other people and build relationships. They do not have verbal problems. They often have a large vocabulary and can express themselves in a grammatically correct and complex manner. Their verbal problems lie exclusively in the area of social communication, that is, the use of language in the social context.
Asperger’s syndrome occasionally coincides with intellectual giftedness or the savant syndrome. The so-called “savants”, of whom there are less than 100 worldwide, are particularly gifted. One of them is the Briton Daniel Tammet, who also has synaesthetic abilities. This means, for example, that he hears tones when he sees certain colours or can taste numbers. Tammet speaks several languages and calculates complicated algorithms in a matter of seconds: “The most famous sequence of numbers in pi is the ‘Feynman point’, which comprises the 762nd through 767th decimal places of pi: ‘... 999999 ...’ [...] The Feynman point is visually very beautiful to me; I see it as a deep, thick rim of dark blue light” (source: Jamie Ward, “The Frog Who Croaked Blue”). Book title for German: “Elf ist freundlich und Fünf ist laut. Ein genialer Autist erklärt seine Welt“, (p. 197) Patmos-Verlag.
Atypical autism is the term doctors use when a person’s pattern of behaviour fits the autism spectrum but does not meet all the criteria for a diagnosis from the autism spectrum. For example, this is the case when there are social communication disorders but no repetitive and consistent interests and behaviours.
Photos: Forschungszentrum Jülich/Sascha Kreklau, Forschungszentrum Jülich/Ralf-Uwe Limbach, Ruf Lanz, Zürich