But you're obsessed too, aren't you?
The diagnosis of autism takes time and is difficult to make. Nevertheless any random journalist thinks he can qualify the former national football coach Ernst Happel as being autistic or Volkert van de G. as having Asperger's syndrome, a form of autism, a practice which greatly displeases Professor Dr Ina van Berckelaer-Onnes. Not only does she consider it unethical but it is also very hurtful for people suffering from autism themselves and their parents. The question put to her by one of her pupils touches upon the crux of autism: 'Are you autistic too? You are also obsessed with autism, aren't you?' This is only one of the examples that she can now reproduce as an example of autistic thinking.
Diagnosis
Ina van Berckelaer-Onnes: 'I am asked such things as: 'Will my child also become a murderer?' | The professor of Pedagogy has several times been approached by a journalist who wanted a diagnosis of 'autism' from her as a specialist, for instance the Volkskrant newspaper which, based on rumours surrounding the conviction of Volkert van der G., the murderer of the politician Pim Fortuyn, thought a group of specialists could make the diagnosis of 'Asperger's syndrome' from a distance. In each Van Berckelaers' answer was a categorical 'No'. 'I didn't know the man, I didn't know his medical record, the only things known to me were from the media. Besides, it isn't at all ethical to pass judgement in such a way, let alone to make a diagnosis. Apart from the fact that the diagnosis of 'autism' is a time-consuming procedure, it is also extremely hurtful to the parents of autistic children and also to these children themselves. I have been asked such questions as: 'Will my child also become a murderer?'
Developmental disorder
The reason that the diagnosis of autism is difficult to make is because it is a developmental disorder with a broad spectrum. 'The intriguing fact is that we don't know what it is,' Van Berckelaer discloses. 'We know that it is 90% genetically determined, but we don't know what that other 10% is, nor do we know which genes are involved. That 10% has to be the trigger which manifests the autism syndrome, and it is not the parents. The suspicion is that it has something to do with the biochemical make-up.'
'Refrigerator mother'
That the disorder was initially attributed to the parents resulted from a mistaken interpretation by the American psychiatrist Leo Kanner, who first described autism in 1943. He suggested that there was a connection between autism and a lack of motherly affection, and launched the term 'refrigerator mother,' explains Van Berckelaer:' He assumed that it was an inherited disorder of affectionate contact. It struck him that all parents were academics and they left a cool and business-like impression on him. He finally retracted this theory as he had not realised that, as the world's first Professor of Child and Adolescent Psychiatry, he, of course, in the first instance only came into contact with the children of academics, not with the children of the refuse collector, for example. By then, however, the damage was already done.' As recently as the eighties, the parents of autistic children have still been challenging this undeserved stigma.'
Asperger's syndrome
Just a year later, in 1944, Hans Asperger, a Viennese paediatrician, wrote an article very similar to Kanner's. The syndrome he described became known as 'Asperger's Syndrome'. The initial interest taken in autism came predominantly from the medical quarter. This was followed by psychological experiments. 'Then the idea gradually arose that the parents needed help as well,' Van Berckelaer says. She herself was confronted with autism in the mid-sixties when by chance she was had to examine a girl showing the symptoms of the disorder. As an orthopaedic specialist, she approached autism as a problem of upbringing. Her interest in the pedagogical aspect of the syndrome led in 1991 to the establishment of an endowed chair in Autism thanks to the Leiden University Fund (LUF). Ten years later, the chair was transformed into a regular professorship with a broader assignment: Pedagogics, especially orthopedagogics related to serious development disorders and care for the disabled.
Cognition
Over recent years Van Berckelaer's research has centred mainly on cognition, the way in which people with autism think: ' There is clearly something different about the way in which people with autism regard the world around them. It is very literal. Everything centres around the here and now, and their ability to imagine something is extremely limited. But within this setting there is a lot of variation. In 40% to 50% of cases, this syndrome is coupled with a mental handicap. In order to characterise the syndrome as autism, three domains must be recognisable: a disorder in social interaction, in communication and in imagination.'
Poly-genetic
Van Berckelaer eventually hopes to be able to explain this behaviour from her research on cognition. 'It has a dual objective: to explain the behaviour and to identify indications for a possible substratum, which will give doctors something to work with. In any case it is now certain that the disorder is not located in one gene only, but that it is a combination of several genes. This is why such a broad spectrum is involved. As early as 1944 Asperger affirmed that autism was poly- genetic. This now constitutes the foundation of the research. He was in fact far ahead of his time.'
Autism rating scale
The autism rating scale that Van Berckelaer developed for her doctoral research is the first Dutch scale used to determine autism. Van Berckelaer:' We wrote down everything that struck us in the behaviour without having a premeditated concept. It was very inductive. By now the disorder has been described so rigorously that we can in fact look at it deductively. This makes the research difficult as the tendency is towards reduction, whereas, based on the idea of poly-geneticism, we should move towards the inductive side again. Today, we also know that autism often occurs in combination with other disorders such as ADHD (attention deficit hyperactivity disorder), Gilles de la Tourette and Down's Syndrome. This broadens the range of the research.'
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The autism pass from the Dutch Association for Autism. This pass gives the social worker a brief description of the owner's autism if he or she gets into difficulties. |
Autism pass
Besides her professorship, or possibly because of it, Van Berckelaere has dedicated herself to helping the parents of autistic children and the children themselves. One of the issues she has always pleaded for is the introduction of an autism pass, a pass that autistic people can carry with them and which they can show in situations which are stressful for them. She has quite a number of distressing examples of what can happen to autistic people. Van Berckelaere is not planning to give up working yet. After she has become emerita and is free from administrative concerns, she will in fact have more time for her research. 'I also have a guest Professorship at the University of Padua; in any event, I can carry on with that until my seventieth birthday.'
Links
(26 June 2007/SH)
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