FOR THE past few weeks, I have been heavily involved in a battle - conducted chiefly by Italian parents - to remove a horrific definition of autism in the latest (2001) edition of the Rizzoli-Larousse encyclopedia.
Here is a "flavour" of this dreadful definition, which amazingly appears in a prestigious work of reference at the beginning of the 21st century: "Autism is the the fundamental nature of the schizoid constitution which can merge into clear schizophrenia ... The autistic child, if he receives the appropriate treatment and this is followed up by his relatives (who are often the cause of the syndrome, especially when they overstep the mark and insist on an over-perfectionistic upbringing) can be more or less completely cured. Nevertheless, even when the problem is resolved, he will still have difficulties in forging normal connections and calm inter-personal relationships."
Thankfully, I have some good news to report: the Italian campaign has been successful, and the publishers have now agreed to replace this definition with another. I have seen the new version, and it is a huge improvement, unrecognisably better informed, accepting autism for what it is: a neurological disorder.
Nevertheless, the fact that this isolated victory was won must not be allowed to cloud the broader picture: the ghastly view expressed in that earlier definition - that the parents are to blame for their child's autism - still holds sway in many parts of the world, hard as it may be to believe.
For at least two decades after Leo Kanner used the term "autism" in 1943 in the way we understand it today, the predominant theory for the cause of autism was bad parenting - the so-called "refrigerator mother." Writers such as Bruno Bettelheim and Frances Tustin blamed parents' lack of warmth for their child's condition, and their ideas were seized on by proponents of, among other approaches, holding therapy. Today, this whole line of thought has been generally rejected, as advanced brain-scanning techniques have shown that autism is due to neurological abnormalities - although their precise nature is still unknown.
But as recently as 1998, IACAPAP - the international umbrella association representing some 60 associations of psychiatrists, pediatricians, psychologists and educationalists - finally announced, at a congress in Venice, Italy, that "parents have absolutely no responsibility for their children's autism." The Italian organisers declared: "This is an historic moment for our country, because the psychogenic theory, long discredited in Anglo-Saxon countries, is still the most fashionable one in Italy. And until now, only the parents' associations have struggled to promote a different approach to the illness."
In Italy, France and some Latin American countries, the bad parenting hypothesis remains alive and well. Some of you may have heard of one French couple who were accused of not wanting their autistic daughter because they had named her Sylvie. (S'il vit in French means "If he lives," and the absurd theory went that the parents had signalled their wish for their daughter's non-existence twice over, by the conditional and by changing the child¹s gender.)
Leo Kanner himself, after first correctly assuming that autism was an organic disorder, sadly followed the trend and cast the responsibility on to the parents - before regretting the move. In 1969, he made a famous address to the first annual meeting of the NSAC (now the Autism Society of America) in which he told parents: "Please beware of the sort of people who dictatorially tell you 'this is what it is because I say so.' We still have to be very cautious and to seek information with justifiable curiosity, trying any number of avenues for amelioration and trying any number of theories about the possible causation. And herewith, I especially acquit you people as parents. I have been misquoted many times. From the very first publication until the last, I spoke of this condition in no uncertain terms as 'innate.' But because I described some of the characteristics of the parents as persons, I was misquoted often as having said that 'it is all the parents' fault.' Those of you parents who have come to see me with your children know that this isn't what I said. As a matter of fact, I have tried to relieve parental anxiety when they had been made anxious because of such speculation."
Bettelheim wrote harrowingly and movingly of his own experiences in a Nazi concentration camp. However, he then made a horrendously flawed mental leap, comparing the fellow inmates he had seen in the camp with what he saw as the hollow, "empty fortress" of autistic children. I could quote a hundred extracts from his books which would - no, must - send a cold chill of horror down the spines of most readers. Try this snippet for size, taken from Bettelheim's 1956 book, "Recollections and Reflections":
"Our experience with the parents of autistic children, many of whom are good, well-educated, middle-class people, leaves little doubt that in their deepest emotions they wish to be rid of these utterly unmanageable off-spring."
Sadly, as we have seen, Bettelheim has many devoted, fervent followers. Take the late Frances Tustin - whose views, I'm afraid, have garnered equally ardent adherents. She wrote the following tosh in her 1981 book, "Autistic States in Children": "Clinical experience indicates that, at the the same time as the realisation dawns on the child that there is a gap between his body and that of his mother, he becomes aware that his body has holes through which substances can go in and can go out ... The autistic child in whom psychogenic factors predominate has experienced the gap between his body and that of the mother as being unbearably painful. In this situation, instead of the orifices in his body being places where fulfilling connections can be made. They are felt to be holes through which obnoxious painful things can enter. In illusion, to prevent this, he blocks these holds with autistic objects, thus shutting out experience and remaining naive. In my view, this is the key to understanding the autistic child."
How can anyone seriously believe this rubbish? But they do. Incredibly, they do.
The problem is that, though one battle was won, after the vast improvement in that dreadful Italian encyclopedia definition, the war continues: the psychoanalytical approach to autism clings on in Italy, France and some Latin American countries. It is the cultural attitudes in these countries that will have to change, and that takes time.
In France, the debate: "Autism: organic or psychogenic causes?" rages on unabated. I heard one French "organicist," Philippe Compagnon, say that the persistence of the psychogenic hypothesis in France was "cultural in essence ... In the training of French health, psychological and teaching personnel, support is given to questionable theories, and several of my colleagues continue to believe in these fairy tales."
Compagnon added, startlingly: "At the Children's Hospital in Boston, our collective position was clear. Four or five times last year, parents came to us and said that they had been told (generally by a psychologist or a social worker) that they, the parents, could be the cause of their children's problems. And, after reminding them that there was no valid scientific argument behind this kind of statement, we invariably replied: 'Nothing that you have done, or have not done, could ever be at the origin of your child¹s problems. And even if you had wanted to, you could not have created autism in your child."
Marie-Dominique Amy, a French psychologist and psychotherapist, wrote an interesting book in 1997 called "Faire face à l'autisme" (Facing up to autism), in which she assessed the relative merits of the educational and psychological approaches to autistic children. In an interview, Amy declared: "French psychoanalysis still continues to affiliate autism with psychosis. But with psychotic children, you find a psychogenic history stretching back over at least three generations. In contrast, autism has organic or biochemical origins, even if we must recognise that this type of illness does dramatically worsen relations between parents and children."
When I contacted Paul Shattock, director of the Autism Research Unit at the University of Sunderland, UK, about the Italian encycopedia controversy, he pointed out that, about four years ago, Autism-Europe had become aware that these antiquated definitions of autism were still in circulation in southern European countries. Autism-Europe undertook to check all dictionary, textbook and encyclopaedia definitions and vet them for accuracy.
"Where these miserable definitions occurred (usually Italian and French works), we wrote them a snotty letter and pointed out the error of their ways. I am sure that these people would have been contacted some years back. They will have checked with their own national medical establishment, who would have supported this trash. Remember that this is medical orthodoxy in these countries and that our children are 'psychotic.' This being the case, hospitalisation rather than education and support in the community are appropriate. This being the case, the parents must be to blame.
"Of course, these definitions totally ignore DSM [the American Psychiatric Association's] and ICD [the World Health Organisation's] classifications. These definitions are perceived as part of an Anglo-American plot to enforce our own values and interpretations and to corrupt the purity of the Freudian theoreticians."
Shattock added: "These antiquated ideas result in unnecessary cruelty to people with autism and to their families, but it is difficult to persuade the medical establishment that they are wrong and that the parents are right. Does this notion sound familiar?"
We must put this refrigerator mother theory into cold storage once and for all.