Estimated reading time: 10 to 15 minutes.
Does French society allow autists to flourish?
Autism logo: source AutisticUK; explanation by Beth Wilson (Twitter) or Gernsbacher & all (2018)
"The road to hell is paved with good intentions" - Saint Bernard of Clairvaux
Anyone can claim to help autists. So to understand the real place of autists in France, we must first know the facts. We can only judge with knowledge of the subject at hand. So let's set the context. What is said about autism internationally and in France? It is by comparing these two aspects that we will know the exact position of France regarding autism. In the list of people to listen to on the subject of autism, scientific research and autism movements come first. This is not a guarantee of irritability, but it is common sense. So, let's listen to the concerned and the scientists.
Autism diversity schema
What do autistic people and scientists tell us about autism?
In the 1990s, in the United States, autists thought they could draw a parallel with the homosexual movement that succeeded in getting homosexuality out of
the Diagnostic and Statistical Manual of Mental Disorders (the article "Quand l’homosexualité était une maladie" on Salte.fr describes this situation well). These autists have created the Neurodiversity movement, in order to get autism out of the pathological lexicon of medicine. In Quebec, autists have founded the
Aut'Créatifs movement to defend autism and to denounce, among other things, the therapeutic relentlessness that judges autists’ behaviors as defective. Nowadays, in England, the autist Chris Bonnello (teacher, author and activist) has conducted
an opinion poll on autism, with more than 11,200 participants. The opinion polls are open to criticism on certain points (see
Wikipedia for explanation), but it was possible to learn, for example, that a majority of autists preferred to be called "autist/autistic" instead of "with autism". There is also
Michelle Dawson, an autist research scientist who in 2013 received an honorary doctorate from the University of Montreal in recognition of her work on autism. She defended autism, showing that autism was not an illness, but a human diversity.
Speaking of scientists in Montreal, there is also Laurent Mottron (professor of psychiatry at the University of Montreal, researcher on autism) who has created a
research group that explores how autists process information. In 2021, Dr. Laurent Mottron explained in a
Spectrum webinar the need for a radical shift in autism research strategy (to better understand autism). In 2017,
Drs. Jiani Yin and Christian Schaaf mentioned more than 800 genes linked to autism (out of the 21,000 genes that make up the human genome). From 2014 to 2016 several studies (by
Eapen and Clarke;
Focquaert and Vanneste;
Constantino and Charman) concluded that there is a very large diversity of autism. In other words, autism is expressed differently according to the autists and their environment. In 2014, as a result of
his work, Dr. Ilan Dinstein alleged during an
interview, "The secrets of autism evidently lie elsewhere than in differences in brain anatomy." In the same year,
a study suggested less synaptic pruning in autists. In 2016, researchers
Penny Spikins and Barry Wright demonstrated the existence of autism during prehistory. In 2014, two teams of researchers led by
Michael Ronemus and
Ivan Iossifov saw through genetics that the most common expression of autism was not associated with intellectual disability. In 2006, Irish psychiatrist Michael Fitzgerald stated in an
interview that:
"There's no doubt about it. All human evolution was driven by slightly [autists]. The human race would still be sitting around in caves chatter¬ing to each other if it were not for them."
Recently, a
paper showed that the brain organoids of autists were more developed than those of non-autists. And
another study mentioned that autists had a larger language region and that brain development seemed to be different in autists children. Several theorys have tried (more or less well) to explain autism,
the double empathy hypothesis,
the intense world hypothesis,
monotropism, etc. Finally, in February 2022, the
WHO published the French translation of the
ICD-11, allowing the French to officially dissociate autism (which is a human diversity) and autism spectrum disorders (which correspond to clinically significant disturbances in the context of autism, in some autists). The ICD-11 is not dealing with autism (scientific issue), but only with autism spectrum disorders (medical issue).
All of this information suggests that there are autists who thrive in society and others who do not; that there are autists who have disorders and others who do not; that autism is not as rare and modern as previously thought; and that autists are right to advocate against the pathological prejudices that prevent all autists from thriving in their lives. So, if France really is the ally of autists, we imagine that it will not say anything else.
Table on some of the consequences caused by pathological biases about autism
What does French society tell us about autism?
In the French media, on TF1 we find the series
Good Doctor which presents an autist gifted and asocial (but TF1 then changed the promotion of the series to present him with "savant syndrome"...). On France Télévisions, there are the series
On the spectrum and
Astrid et Raphaëlle with the same caricatures of autists, i.e. "asocial, either gifted or with a intellectual disability". Thus, while autists like
Hugo Horiot,
Wentworth Miller and
Anthony Hopkins are playing non-autists, there are non-autists playing caricatures of autists. Unfortunately, we also see autists like
Aurélien Deschamps playing
caricatures of autists. Film art also instrumentalizes autism. "Louis' shoes" is a short film with prejudices about autism, developed by 4 non-autists students. These students won about 50 awards, but it made absolutely no difference for autists. Finally, there is the film
Hors Normes, which claims to be about autism, when it is not. The film focuses on the very few autists and non-autists who have a intellectual disability and who lack support in France.
What do we find in French culture where
psychoanalytic belief is so influential that from 1987 onwards France opposes the World Health Organization to create its own classification of mental disorders (CFTMA and
CFTMEA) in line with psychoanalysis? Some professionals of psychoanalytical obedience still practice
packing. This technique has been condemned by all autists, by a
scientific consensus, by the
UN and has been
proven ineffective. In 2021, the government felt obliged to remind, by an
interministerial press release, that the results of mistreatment should not be taken for autism. France maintains
a backward and pathological vocabulary such as "high/low level autism" or "profound/superficial autism". The French are used to talking about "several forms of autism", rather than "several expressions of autism". The website
autisme.fr mixes autism with pervasive developmental disorders, a scientific nomenclature that has not been used since the end of the 2000s.
INSERM makes people believe that autism is rare, by only affecting one birth in 100, and claims that fragile X syndrome or Rett syndrome are linked to autism. One would think that France has not evolved since 1980. Taking advantage of these confusions, neurobiologist Yehezkel Ben-Ari and child psychiatrist Éric Lemonnier created the company
Neurochlore in 2011. They want to treat autism, then confused with
Angelman syndrome, with a drug based on
bumetanide. But confirming
the opinion of Dr. Laurent Mottron, a
recent study has shown the ineffectiveness of bumetanide on autism. The research on autism of Dr Hans Asperger is still demonized, through the trials of intent of Edith Sheffer, who has a huge
conflict of interest. While the autism research of Dr. Leo Kanner is still
glorified, even though
Steve Silberman has long since demonstrated Leo Kanner's incompetence and dishonesty. In France, autism remains confused with autism spectrum disorders (examples with
passeportsante.net;
Autisme France;
Autisme Info Service; and even the
Groupement national des centers ressources autisme). Media-wise and culturally, nothing is going well. And what about the associative sector?
Do you know about the association
Vaincre l'autisme (Overcoming autism) which leads actions against autism? This non-autists association describes autism as a "neurological illness that destroys life". So imagine if we replaced the word "autism" by another diversity of humanity (like "black", "homosexual", "woman", "redhead", etc.). What does the French state do about it? Nothing... There are also associations with autists, but none of them respect
the main criterion of activism, namely: to avoid conflicts of interest (the site Axens.fr explains "Les conflits d’intérêts dans les associationson"). For example, the association
CLE Autistes
instrumentalized autism in 2021, confusing autism with a psychiatric disorder in order to get its autists members vaccinated more quickly. There is also a problem with the association PAARI (Personnes Autistes pour une Autodétermination Responsable et Innovantes), which in addition to confusing autism with autism spectrum disorders, does not wish to "speak for all [autists]". They thus make the choice to leave some autists alone in front of the pathological prejudices which spoil their life.
Media, culture, association, researchers... What do you think of all this "French" information on autism? Do you think that France is ahead of its time? Or that France is more than 40 years behind on autism? A delay that could, for example, legitimize
a UN report criticizing France's position on autism. Finally, in view of all these facts, we can conclude that France has really remained
stuck in 1980.
What should we conclude?
"France is the enemy of autists"? No, because as
Hanlon's razor indicates: "One should not attribute to malice what stupidity is sufficient to explain". France is only incompetent and full of conflicts of interest (Interview with Josef Schovanec "Être Malheureux comme un autiste en France"). So the right question seems to be: "How do you act in France, when you are an autist?" Because, with or without conflict of interest; with or without hypocrisy; with or without incompetence; with or without dishonesty, with or without good intentions, France does not allow autists to flourish. We must therefore act. Autists must intervene to change this. Against the "backward degenerate obscurantism" on autism in France (explained by the excellent website
autistes-france.fr), there is only one thing left to do: join an association practicing
representation for autists. Because it is only with this that we will REALLY make France evolve on autism.
NB: Internationally as well as in France, many other things are said about autism (good and bad). The purpose of this article is not to summarize all the knowledge, good and bad, about autism; but to make a portrait, accessible to all, of the French autism problem.