The term “neurodiversity” is fashionable and it could be a good thing to limit the stigma that people suffer, but also with dys disorders (dyslexia, dyspraxia, dyscalculia, dysgraphy, dysorthography, dysphasia) and/or that live with a deficit disorder with or without hyperactivity (ADHD). But on the one hand, the concept seems unfortunately today to slide militant spheres of people concerned with those of marketing experts, a personal development trend, with a whole rhetoric around “superpowers”.
On the other hand, the term sometimes appears to be used as euphemism to avoid saying the word “autistic”, considered negative because too often assimilated to an insult. At the heart of all this, there is a vision both medical and deficit in autism, whose world awareness day takes place every year on April 2. There are also binary consumer representations as erroneous as sensationalist who do not benefit anyone and surely not to the autistic themselves.
What is autism?
Proposing a simple definition of autism is not easy, if we want to avoid reducing it to a pathologizing vision and not to be satisfied with the criteria of the DSM-5-Diagnostic and statistical manual of mental disorders and psychiatric disorders of the American Psychiatry Association, which refers. Psychologist trained in behavioral and cognitive therapies (TCC) and doctor of psychology specializing in the support of neurodiversity, Raven Bureau explains: “We often use medical definition because it allows access to diagnosis and without diagnosis, there is no aid or rights. This definition is based on a dyad of difficulties. It is, on the one hand, difficulties relating to communication and social interactions and, on the other hand, difficulties around executive functions, repetitive behavior, so -called “limited” or “specific” and sensoriality. Then there are “severity” levels relating to the degree of support that the person needs. ”
But for the specialist, as for the proponents of neurodiversity – in the original sense of the term, within the social anticapacitarian or antivalidist movement – it is better to turn to a social definition of autism. This suggests that autistic people have a different cognitive functioning of non-autists, who is not described by a sum of deficiencies. No less, no better, just different. And what causes difficulties is not so much this functioning as the fact that it comes up against an environment and on social conditions that are not adapted to it.
Distorted media and social figures
Difficult today to precisely assess the number of autistic people in France, as the evaluation methods vary and lack consistency and as the diagnostic criteria have evolved in recent decades. “Figures in the United States have gone from one in 10,000 to one in 40 between the 1960s and our days”notes Adrien Primerano, a postdoctoral sociologist at the CNRS and specialist in the subject. The figures used in France in national strategies show 1% of the population, or around 700,000 people, including 600,000 adults. No “epidemic” in there, but different diagnostic criteria and better screening.
“It is important to have diversified representations which are not only in extremes.”
The fact remains that “atypical” cognitive operations are not so rare and concern a significant part of the population, with very many visible or invisible profiles, with difficulties but also different forces. This is the reason why the term “spectrum” is often used. Only, this spectrum of autism is diluted in media and social representations. For a long time, the figure of a child “walled” in his world and who does not have access to oral language has predominated. Let us also quote the biased figure of an autistic person who is no longer a subject of law, to whom health professionals can well undergo treatments which fall under mistreatment and who may well be murdered by his parents, which one would excuse almost because they are exhausted.
In Marseille, the mother of the autistic child found dead recognizes having stabbed her pic.twitter.com/gzvfoxdkwg
– BFMTV (@bfmtv) October 31, 2022
This figure still persists today and we found it in this visual campaign of the autism collective, which presented autism as a hostage lessee.
But other representations have taken precedence with, as Kevin Rebecchi, Doctor of Education and Training Sciences, remarks, “A superhero trope»With superpowers. It’s Raymond Babbitt, played by Dustin Hoffman, in the film Rain man (1988) is the DR Shaun Murphy, embodied by Freddie Highmore, in the series The Good Doctor… In short, white men, thirties, extremely gifted but whose social behavior deemed strange participates, almost as much as their talents, in the words of fiction. “What is shown is actually a” scientist syndrome “”indicates Kevin Rebecchi. The latter also notes that the personal successes of a Mark Zuckerberg or an Elon Musk are also sometimes attributed to autism, even though “These are people who were already millionaires by their parents, who have already had every chance in their lives, etc.”.
And today, a good part of the population expects an autistic person to be endowed with impressive calculation capacity, encyclopedic knowledge or exceptional reasoning or memory faculties. “Whether we think of autisms as highly dependent on one side or as real geniuses of another, it places them in a kind of extraordinarianity which excludes”deplores Adrien Primerano.
“To have only extreme representations with in particular this image of genius is problematic in the sense that one has the impression that the person has the right to exist and to be integrated only because it of exceptional capacities”comments Adeline Lacroix, doctor of neuroscience and cognitive psychology and author of Feminine autism – historical and scientific approaches, clinical looks (April 2023). In fact, this validist vision with a “porn inspiration” trend, which waits for the autistic person to shine by his extraordinary talents and gives “life lessons”, denies the difficulties encountered but also forces. In addition, it does not have the integration or even the understanding of autism in its sights. And this affects people with autistic people and those around them at different levels.
Perverse effects
Parents of very dependent autistic children thus testify to a certain anger with an idealized conception of autism. David, father of a young autistic woman who needs constant support, protests against “An invisibilization and a total denial of the handicap due to certain associations and methods which prevent seeing reality opposite”. At a collective level, this induces a real lack of support and aid, which obliges certain parents to create their own association in order to develop structures capable of welcoming their children in good conditions. “It is also for these children and their parents the fact of duty to face the negative judgment of unknown in public places in the face of atypical behavior”regrets Adeline Lacroix.
For adult autistic people, more “invisible” because they have learned to hide their difficulties, caricatural representations and the rhetoric of “superpowers” is also an obstacle. They can thus delay a diagnosis which allows access to arrangements and support. They can also create many injunctions, especially within companies, which minimize the difficulties and add to the mental load of autistic people who will rise, until exhaustion, to adapt while some arrangements would greatly improve their daily life.
“The person is autistic as” positive “with things put forward as” the sense of detail “, when it comes to advertising on the inclusiveness of a business, to value themselves on the fact that one knew, as a manager, to integrate and make work” these people “Raven bureau nuance. But it is also used as a weapon to oust the person from decisions that concern them, do not give them access to positions of responsibility, prevent them from participating in decision -making … It is an oppressive mechanical seen and reviewed, unfortunately. “
This rhetoric and these representations also participate in harming the self -image. “It may happen that after a diagnosis of people feel bad, that they make the observation of a kind of injustice by saying that of autism, they only have the difficulties and not the supernights”continues the doctor in psychology.
Change (really) look at autism
Changing your gaze on autism is not overvalue the forces – even if they exist – from autistic people, while putting their difficulties and the need for social change under the carpet. “It’s listening to the people concerned!”insists Raven Bureau. The specialist mentioned in particular the importance of developing participative research, a methodology in which researchers and clinicians collaborate with autistic people, their loved ones and professionals on joint research, by optimizing the advantages, skills and knowledge of each.
It is also kicking in the anthill of media representations, in order to visibility all the colors of the spectrum of autism and not be satisfied only with the word of some ambassador. “It is important to have diversified representations which are not only in the extremes”confirms Adeline Lacroix. In fiction, for example, this presupposes in particular that authorities and autistic actors are part of the design. This also supposes to get out of the rhetoric of potentially discriminating exceptionality, to finally show people autistic and not autistic who evolve together.
