The history of autism in France is marked by the strong influence of psychoanalysis, and by the persistence of institutionalization practices that violate the fundamental rights of autistic people. According to estimates at the end of 2016, 0.7 to 1% of the French population has an autism spectrum disorder, most of which is undiagnosed, leading to varying degrees of disability.
Before the first intervention and medical definition initiatives, autistic people – often likened to idiots or, in the image of Victor of Aveyron, "wild children" – were probably very marginalized and victims of serious violence. The first steps were taken in the 1950s, notably by Professor Roger Misès, who set up day hospitals and devised the French classification of mental disorders in children and adolescents (CFTMEA – classification française des troubles mentaux de l'enfant et de l'adolescent). Interest in autism grew following the publication of Bruno Bettelheim's The Empty Fortress (1967) and his lectures in France in the 1970s. The first government measures in this area were taken in the 1990s by Simone Veil. At the beginning of the 21st century, the French psychiatric approach – which equated autism with a mental illness caused by poor parenting, and advocated placement in a specialized institution – was challenged by parents' associations, who referred the matter to the Council of Europe, because of the social exclusion it led to for autistic children, and the blame placed on parents by the medical profession. This led to autism being classified as a disability, and to the introduction of new measures via four "Autism Plans" in the years 2000 and 2010. These led to creating an Autism Resource Centre in each region of France. The old classification of autism as a psychosis is gradually being abandoned in favor of the concept of autism spectrum disorder (ASD), which is present in international classifications and takes account of the contribution of neuroscience and the development of individuals in society. The Autism Plans recommend increasing school enrolment rates for children, as well as employment for adults. However, in a report to be published in March 2019, the ONU is calling on France to embark on a genuine policy of deinstitutionalization.
The team at the CHRU in Tours was a pioneer in the study of autism, thanks in particular to the work of Gilbert Lelord and, more recently, Catherine Barthélémy. Thomas Bourgeron and Laurent Mottron, who work in Quebec, are also among the French researchers whose work is internationally recognized. Parents of autistic children have spoken out in public debates or autobiographies, including Olivia Cattan, Danièle Langloys, and Francis Perrin. More recently, autistic people such as Josef Schovanec have spoken out in support of neurodiversity in the face of the medical model. Associations that have historically been active in this field include Autisme France, Sésame Autisme and Association for research into autism and the prevention of maladjustment in France (ARAPI – Association pour la recherche sur l'autisme et la prévention des inadaptations).
The treatment of autism in France is a source of much tension, particularly on the question of intervention, which pits supporters of a behavioral approach, represented by parents associations and certain cognitivist scientists, against those who use a psychoanalytical frame of reference, and the movement for the rights of autistic people. Specifically French practices, such as the frequent use of the word "autistic" as an insult and the overmedication with neuroleptics, are a source of exclusion and suffering for the people concerned, who are affected by numerous social difficulties such as dropping out of school and unemployment. Recent research recommends building on the specific interests of people with autism to promote an inclusive society.
Descriptions and statistics
According to the sociologist Lise Demailly, autism in France represents a social space where passionate debates and symbolic violence are the first things to be observed, with "ideological, epistemological, ethical, economic and practical conflicts" leading to court cases on an international scale. She notes that "in this polemical environment, everyone, including researchers, is confronted with a linguistic police force".
The field of autism in France has its specific characteristics, due in particular to the heterogeneity of approaches, representations, and positions, as well as the importance of psychoanalysis. She notes, however, that in Quebec, where psychoanalysis is not used, parents also denounce the inadequacy of the services offered and that not all social groups are positioned in the binary opposition of cognitive behaviorism/psychoanalysis. The "scientific discourse" on autism is now internationalized, with neurobiologists and geneticists "now providing the bulk of legitimate production, mostly in English".
While French psychiatrists and psychiatrist-psychoanalysts are contested and attacked, losing legitimacy with the public authorities, "they nevertheless continue to produce a significant intellectual output in editorial terms, but not in "scientific" journals". Demailly points out that "a systematic survey of scientific and medical databases shows" that there is no single scientific definition of autism or knowledge of its etiology, with evidence-based medicine having found neither a biological marker nor a unified theory. However "there seems to be an apparent consensus on the general description of symptoms" around the triad, with epistemological tensions nonetheless. The representation of autistic people themselves remains weak in France, with a late arrival of the neurodiversity movement.[1]
In France, the official website of the Ministry of Solidarity and Health on autism describes it as an "early-onset neurodevelopmental disorder that lasts a lifetime", characterized by three factors: genetics, brain development and behavior, and manifested by "communication difficulties, obsessive interests or activities, repetitive behavior and strong resistance to change".[2]
There are also sensory hyper- or hypo-sensitivities of varying intensity. Many associated disorders affect autistic people, including epilepsy, hyperactivity, eating and sleeping disorders. The department's website emphasizes the gradual abandonment of sub-categories of forms of autism and adopts the dimensional notion of "Autism Spectrum Disorder" (ASD), which takes into account the development of individuals in society.[2]
According to Franck Ramus, director of research at the French National Centre for Scientific Research (CNRS), who uses the international criteria of the autistic triad (2014), "people with autism are characterized by the fact that they are far from the norm in three areas: social interaction, communication, and their preferred interests and activities. These differences lead to difficulties in adapting to family life and society, and to suffering both for these people and for those around them".[3]
The cognitive psychiatrist Laurent Mottron notes (2016) that "on the whole, autistic people show a very poor adaptation to our society, but that a minority, perhaps a tenth of them, are perfectly verbal, relatively autonomous and fulfilled in adulthood. This minority consists of individuals who were as autistic [with as many symptoms] at pre-school age as others who were less well developed".[4] An equivalent proportion of autistic people fall outside the diagnostic criteria for autism over time, others remain non-verbal, and some may display behaviors that are difficult to manage.[4]
The psychological characteristics of parents are not the cause of their child's autism, nor are gluten, vaccines or mercury.[5] The Inserm website describes the cause of autism as "multifactorial, largely genetic"[6] and genetic involvement has been demonstrated.[7] An international team of Inserm led by the French researcher Thomas Bourgeron has identified the first monogenic mutation.[8] Other mutations that disrupt communication between neurons have been identified by international research teams2.[9]
According to the scientific journalist Gerald Messadié, the influence of psychoanalysis perpetuates the erroneous view that autism has purely psychological causes.[7] For the psychiatrist and neurologist Gilbert Lelord, practitioners who claimed that "it's all in the mind" had a powerful argument because "this echo of a superior race", linked to Nazieugenics, explained the difficulty of accepting the genetic approach.[10] Laurent Mottron adds that in France, "the term 'child psychosis' is associated in patients' files with a psychodynamic explanation of autism".[11] The child psychiatrists and psychoanalysts Bernard Golse[12] and Roger Misès[13] defend the existence of an "autising process" (in 2012 and 2008),[12] as do Pierre Delion (in 2001),[14] the Freudo-Lacanian psychoanalyst Charles Melman (in 2013, based on the work of Françoise Dolto)[15] and the psychoanalyst Marie-Christine Laznik (in 2013 and 2015), who speaks of "babies at risk of autism".[16][17]
Classification
The French Classification of Mental Disorders in Children and Adolescents (CFTMEA) by Roger Misès, the French nosological reference for the medical classification of autism, maintains in the 2012 revised version two original subcategories among pervasive developmental disorders (PDD), deficit psychosis, and psychotic dysharmonia.[18][19] These categories do not exist in the international classifications ICD-10 (Chapter 05: Mental and Behavioural Disorders) and DSM-V.[18][19] The other forms of autism recognized both in this classification and in ICD-10 are infantile autism and Asperger's syndrome.[18] According to the child psychiatrist Dominique Sauvage, the nosological recognition of autism "has been delayed by the lack of research in child psychiatry, hypotheses far removed from neurobiological reality and the passionate debates that have followed".[20]
Correspondence between CID-10 and CFTMEA-R-2012 classifications[21][22]
ICD 10
Pervasive developmental disorders
CFTMEA-R-2012
Pervasive developmental disorders – early psychoses
1.04 Multiple and complex developmental disharmony / Psychotic disharmony
The use of the term "psychosis" to describe autism was strongly condemned at the beginning of the 21st century.[23] According to the psychologist and anthropologist Claude Wacjman, although the CFTMEA does use the term psychosis, its systematic terminological and computerised correspondence with the options of the DSM-5, applied to the International Classification of Diseases used by the World Health Organization, allows the various health services to better account for their activities.[24][25] The validity of child psychosis diagnoses continues to be defended by certain autism professionals, such as Clément de Guibert[26] and the psychiatrist and psychoanalyst Pierre Delion.[27] On the other hand, health professionals such as Roger,[13] the clinical psychologist and psychoanalyst Jean-Claude Maleval[28] and Claude Wacjman[29] oppose the international concepts of Autism Spectrum Disorder (ASD) and Pervasive developmental disorder (PDD), denouncing, for Wacjman, "an extremely broad extension of the autistic spectrum in a context of increasing commercialisation of the education of autistic children"[29] and, for Maleval, a "catch-all".[28] Jacques Hochmann believes that the term "autism spectrum" will disappear in the next few years, to be replaced by the term "autisms" in the plural.[30] This concept of a plurality of autisms, sometimes used in international studies, is also used by psychoanalysts, especially Lacanian psychoanalysts.[31]
The classification of autism in France has always been ambiguous: autism is officially classified as a disability, but was previously classified as a mental health condition, which makes it difficult to implement official policies.[32] Claude Wacjman and Oliver Douville question "the fabrication of the 'disabled autistic person'".[33] Josef Schovanec points out that the fact that autistic people are classified as mental health patients means that they can be "psychiatrised, whether under duress or not".[32] This fact, together with the administration of psychotropic drugs and the existence of psychotherapies that are not very effective, is at the root of a strong rejection of the notion of mental disorder on the part of autistic people and their parents, despite the existence of associated behavioral and mood disorders (anxiety, depression, etc.).[34] People with autism meet the 2005 law's definition of disability as "a limitation of activity or participation in social life experienced in one's environment".[34] The degree of disability can vary greatly, from the inability to meet basic needs, through difficulties in maintaining a job or family life, to the absence of any feeling of disability.[34]
Reference data were collected in 2010 by epidemiologist Éric Fombonne for the Haute Autorité de santé report on knowledge of autism:
Estimating the prevalence of pervasive developmental disorders[35]
Source:
Fombonne, 1999
Inserm, 2002
Fombonne, 2003
Fombonne, 2005
Fombonne, 2009
Number of studies included in the review
23
31
32
40
43
PDD
18,7/10 000
(1/535)
27,3/10 000
(1/336)
27,5/10 000
(1/364)
37/10 000
(1/270)
63,7/10 000
(1/156)
Childhood autism
7,2/10 000
(1/1389)
9/10 000
(1/1111)
10/10 000
(1/1000)
13/10 000
(1/769)
20,6/10 000
(1/485)
Other childhood disintegrative disorder
–
–
0,2/10 000
(1/50000)
0,2/10 000
(1/50000)
0,2/10 000
(1/50000)
Asperger's syndrome
–
3/10 000
(1/3333)
2,5/10 000
(1/4000)
3/10 000
(1/3333)
6/10 000
(1/1667)
Atypical autism, Other PDDs
11,5/10 000
(1/870)
15,3/10 000
(1/654)
15/10 000
(1/666.7)
21/10 000
(1/476)
37,1/10 000
(1/270)
The Pasteur Institute summary (2013),[36] reproduced on the official website of the Ministry of Social Affairs and Health (2016), puts the prevalence at one person per 100;[5] the same organization in 2018 summary gives a range of 0.9 to 1.2% of the population, or around 700,000 people, 100,000 of whom are under 20 years old.[37] According to Inserm, the male/female ratio is 4:1 (2013 figures).[6] According to the 2012 report of the French Economic, Social and Environmental Council, "France has 250,000 to 600,000 autistic people out of 5 million French people with disabilities".[38] At the Autisme in Franch conference in 2016, Éric Fombonne highlighted the fact that French epidemiological studies are lagging behind and that there is a significant under-diagnosis, based on the difference with the prevalence in other countries that have conducted such studies. Passive studies based on existing files have shown a rate of 0.7 to 0.8% since 2000. He puts forward the cautious hypothesis of 1% of autistic people in France.[39] The American sociologist Gil Eyal, following a comparison of epidemiological data on autism in 17 industrialized countries between 1966 and 2001—carried out by Éric Fombonne[40]—found that the prevalence of autism in France is the lowest of these countries.[41] He explains this by "the prestige that psychoanalysis continues to enjoy in France", the specificity of the CFTMEA diagnostic criteria,[42] and the very high rate of institutionalization.[43]
According to the psychiatrist and psychoanalyst Pierre Ferrari, who uses a restrictive definition of autism, most French and foreign studies agree on a prevalence of 4 to 5 per 10,000 births for autism "proper" and a rate of 12 per 10,000 for all pervasive developmental disorders.[44] According to Claude Wacjman, the use of such a range of assessments makes it possible to adapt care by not lumping different disorders into a single category.[25] According to the Agence Nationale pour l'évaluation médicale, between 6,200 and 8,000 children and between 17,400 and 23,700 adults were diagnosed with autism in France in 2015. According to Pierre Ferrari, this figure includes not only the typical forms of autism according to Kanner, but also atypical forms, deficit psychoses, and probably certain psychotic dysharmonies.[45] He adds that some studies report an increase in incidence, without being able to say whether this is a real increase or the effect of better and earlier diagnosis, or even the effect of an "over-extensive" use of the concept of autism. According to Claude Wacjman, there is a contradiction in the figures for the number of autistic people due to the confusion and assimilation of disorders that are not identical.[29] On the contrary, Laurent Mottron believes that the use of the CFTMEA creates a difference with the internationally prevailing concept of pervasive developmental disorder and therefore an under-diagnosis of the French population.[11]
According to Sophie Le Callennec and Florent Chapel, former president of the Collectif Autisme, it is impossible to know how many autistic people there are in France because some of them have not been diagnosed. They estimate that there are 48,500 autistic adults in specialized institutions, representing two-thirds of the people who spend more than 30 days in psychiatric hospitals. Of these, 465 are in seclusion (2016). At the beginning of 2016, they estimated that there were between 450,000 and 650,000 people with autism in France, based on a comparison with international diagnostic criteria.[46]
According to a survey of 900 French people with autism conducted by Doctissimo and the FondaMental Institute and published in March 2013, 55% of respondents have infantile autism, 23.5% have an unspecified pervasive developmental disorder and 16.6% have Asperger syndrome.[47]
Along with Latin America, France is one of the two regions of the world in which psychoanalysts continue to include infantile autism in their explanatory field after the 1970s and 1980s,[11][48] and where "culture psychoanalytic practice exerts an important influence on psychiatric culture",[49] giving a psychodynamic interpretation of autism.[50][51] The process of deinstitutionalization began very late, the rate of institutionalization for French children being, according to the American sociologist Gil Eyal and his team, by far the highest in all of Europe.[43] France also illustrates an aspect of the battle against autism, through strong opposition between parent associations and health professionals.[52][53] According to Laurent Mottron (2016), "decisions on intervention in autism are made, these days, in a warlike context".[50] According to sociologist Florence Vallade, the progressive involvement of French associations of parents of autistic children in favor of behavioral methods followed a classic path in three stages: realizing, reproaching and claiming.[54]
The first requests from parents concerned the creation of places in specialized institutions for autistic people, and the release of public financial resources. In the 2010s, they moved towards questioning health professionals and focusing on the issue of schooling. According to sociologist Brigitte Chamak, these demands are "used by public authorities to accelerate the process of deinstitutionalization and further involve parent associations, with a reduction in total resources".[55] The deinstitutionalization policy, inspired by that of the United States, arouses opposition from health professionals, who see their conception of autism called into question, and fear that free interventions will no longer be guaranteed for the most vulnerable families. deprived.[56] Since the 1980s, the nosological classification and epidemiology of autism have evolved from a disorder considered rare and severe to a constellation of related[57] disorders, of varying intensity, affecting approximately 1% of the population.[58] According to neurologist Catherine Barthélémy and child psychiatrist Frédérique Bonnet-Brilhault, since the 1990s, autism has become a social issue;[59] the psychologist Michel Grollier noting that "the transition from the 20th century to the 21st century is done by questioning autism".[60] French developments in terms of legal texts have been considerable since then, but strong resistance persists.[59]
Before the birth of any notion to define autism, the people concerned were probably strongly marginalized, even killed, and described as "idiots" (for Jacques Hochmann, the "idiot", an individual excluded and treated without humanity, is a precursor of the autistic),[61] "crazy" or "wild children". Victor de l'Aveyron, a so-called wild child taken in by Dr. Jean Itard in 1801, shows traces of abuse and attempted infanticide, as well as typical symptoms of autism spectrum disorders.[62][63] We also owe to Dr. Itard one of the first descriptions of non-verbal autism, under the name of intellectual mutism, in 1828.[64] The clinical entity corresponding to infantile autism is described under the name "idiotism", then "idiocy".[20] Throughout the 19th century and until the beginning of the 20th century, most alienists considered the idiot as the last degree of hereditary degeneration, following the eugenic ideas in force.[65] With Itard, Édouard Séguin (1812–1880) was one of the first to take an interest in these people, and to provide descriptions of individuals who could retrospectively be considered autistic.[66][20]
The first descriptions of childhood autism and Asperger's syndrome appear in international scientific literature (in English and German) in the 1940s.[67][68] Autistic people may have been among 45,000 deaths from starvation and cold who were held in French psychiatric hospitals under the German occupation.[69]
1950s to 1980s
Gilbert Lelord (1927–2017), one of the pioneers of the study of autism in France.
Until the 1980s, it was essentially infantile autism, known as Kanner autism, which was used to define autism in France, in the category of psychoses or schizophrenias.[64] Furthermore, until the 1990s, "the diagnosis of autism was only announced to parents in a minority of cases" because "according to the traditional concept, a person could not be considered autistic as long as they spoke".[70] According to psychoanalyst Paul Alerini, the publication of The Empty Fortress, in 1967, created a fascination with autism, a perception of the autistic child as a "machine child", and gave psychoanalysis "a public audience whom she had never known".[71] According to Jacques Hochmann, it was above all a television program by Daniel Karlin, in 1974, and the conferences and seminars that Bettelheim gave in France that year, which disseminated his vision of autism (theory of the mother refrigerator ) among health professionals and the general public.[72]
The French clinic has long equated autism with childhood schizophrenia, the first publications in French allowing them to be differentiated only arrived in the 1980s.[64] The Tours hospital team became a pioneer in the study and support of autistic children, under the leadership of psychiatrist Gilbert Lelord,[73] neurologist Catherine Barthélémy (who joined him in 1969) and child psychiatrist Dominique Sauvage.[74] According to Valérie Löchen, until the 1990s, autism was not the subject of any particular attention from the French public authorities.[49]
Implementation of sector policy
According to Jacques Hochmann, French psychoanalysts were the first to deal with autistic children with humanity.[75] Still according to him, from the 1950s, in particular thanks to psychiatrists and psychoanalysts Roger Misès and Serge Lebovici, actions of care, education and pedagogy inspired by practices and theories current in the United States and the United Kingdom were set up in France, through part-time institutions, day hospitals and outpatient care, to promote communication and social relationships in autistic children.[76] The Association Serving Misfits with Personality Disorders (ASITP in French) is at the origin of the creation of the first-day hospital for adults, the Santos-Dumont day hospital in Paris, in 1963.[73][77] These approaches spread throughout France in the 1970s.[76] European and especially French child psychiatry supports an environmental etiology, integrates it into a multifactorial etiology, and contributes to developing care structures close to the population with this so-called "sector" policy.[78] These structures, dedicated to all children considered to have serious personality disorders, offer care combining psychological, educational, pedagogical, and rehabilitation.[78]
Depending on the severity of their disorders and their initial diagnosis, autistic people are referred to a psychiatric hospital or medical-social institute.[49] The empirical approaches implemented in these establishments often prove to be "insufficient and unsatisfactory",[49] due to lack of financial and human resources,[79] but also due to the emphasis placed on "care" to the detriment of education.[77] On 13 January 1989, the vote of the Creton amendment (named in homage to its initiator, the actor Michel Creton) allows disabled adults over the age of 20[80] to remain in a medico-social institute, generally very dependent and/or multiple disabled people.[81]
First implementations of behavioral therapies
In the 1980s, French parents discovered the existence of behavioral therapies (inspired by behaviorism ) applied to autistic children in North America, and attempted to import them to France, motivated by the guilt-inducing aspect of psychoanalytic theories of autism ( Refrigerator mother theory ) and by the possibility of actively participating in the education of their children.[82] In 1989, psychiatrist Catherine Milcent, a future member of the Autisme France association, translated the work of Eric Schopler into French for the first time, and created the first French class integrated with the TEACCH program at Meudon.[83] From the 1990s, the first reception units dedicated specifically to autistic people were created, and implemented the first behavioral programs available in France ( TEACCH, ABA, etc. ), but proved too few in number to meet the demands. In addition, the medico-social sector "views them with suspicion". Nevertheless, the arrival of these programs leads to an evolution in the approach to autism on the part of health professionals, thanks to the development of multidisciplinary care and the opening to the Anglo-Saxon model .[49]
Simone Veil in 1993.
In the 1990s
In 1993, Simone Veil, who had recently arrived at the Ministry of Social Affairs, Health and Urban Affairs, noted, under pressure from parents' associations,[74] major difficulties in supporting autistic people. Three reports were published in 1994 and 1995.[74] The definition of autism, given at the time by the National Agency for the Development of Medical Evaluation (ANDEM in French), refers to "deviant or delayed functioning"[84] in social interactions, verbal communication or non-verbal and behaviors, reporting that "autistic people often present fears, sleeping or eating disorders, anger outbursts and aggressive behavior".[84] On 27 April 1995,[74] it adopted the Veil circular, an aid plan endowed with 100 million francs over five years.[85][55] The circular is not applicable, due to lack of budget: Moïse Assouline, doctor-director of the service of the Santos-Dumont day hospital, in Paris, declared in the weekly L'Express that "the budgetary restrictions decided by Alain Juppé, at the end of 1995, passed like a bulldozer on autism, despite having been made a public health priority a few months earlier".[86]Jean-Paul Corlin, father of an autistic child, submitted a petition with 3,000 signatures to the government of Alain Juppé in April 1997. Between 1995 and 2000, four specialized resource centers and 2,000 childcare places were created. However, the September 1999 UNAPEI report considered these measures insufficient.[87] It highlighted numerous diagnostic errors, too few places to meet needs, and a breakdown in care between the psychiatric sector and the medico-social.[87]
Opinion 47 of the National Ethics Advisory Committee
According to Brigitte Chamak, the year 1995 was the climax of disagreements between health professionals and parent associations.[55] The problem of social exclusion of autistic people, often "psychiatrized" in France, is raised before the Council of Europe, whose report highlights that only 3 to 7% of people considered autistic become independent as adults.[88] The Autisme France association contacted the National Consultative Ethics Committee (CCNE in french) in 1994,[59] denouncing the difficulties in obtaining an early diagnosis, the use of the CFTMEA classification, psychoanalytically inspired treatment, and the lack of knowledge of the organic origin of autism.[55] The association defended cognitive-behavioral therapies (CBT) before a group of neuroscientists.[89] Opinion No. 47 of the CCNE was issued during the national ethics day.[59] 10 January 1996, marking the beginnings of the alliance between parent associations and public authorities to develop the approach to autism.[55] This focuses media coverage on the issue of "patient care".[90]
Chossy law and connection to the field of disability
The special education allowance (AES in French), intended for parents of disabled children under the 1975 law, was not extended to the parents of autistic people on the pretext that autism is a disease.[91] On 11 December 1996, the "Chossy law" (by Jean-François Chossy) was promulgated to guarantee them multidisciplinary interventions, and to have autism recognized as a disability,[92] by modifying the 1975 law.[91] Adopted unanimously, this was the first law in favor of the rights of autistic people in France.[49] It reduced the stigma associated with the notion of psychiatric illness.[93]
A new envelope of credits was voted in January 2000 to create reception places intended for autistic people, between 2001 and 2003.[87] Indeed, many French families moved at this time to Wallonia, a French-speaking Belgian region that has educational centers. At the same time, according to Olivia Cattan, other families, having heard about behavioral methods, go to train in countries that teach them, to guarantee better future chances for their children.[85]
In 2000, the international concept of pervasive developmental disorder was introduced into the French nosography of autism,[94] as well as Asperger syndrome.[95] This change was poorly received by most French psychiatrists, for whom autism "is a rare and severe patholog".[96]
The law on user representation, enacted on 4 March 2002, sought to encourage the participation of autistic people in public decision-making concerning them.[59]
Report by Jean-François Chossy in 2003
In October 2003, Jean-François Chossy submitted a report entitled "The situation of autistic people in France, needs and perspectives" to the Prime Minister, which reported a significant number of disabled people for whom support was clearly insufficient.[97] This report called for the launch of an "ORSEC plan for autism".[98] It concluded with 12 considerations concerning early diagnosis, stimulation of research, support for the autistic person throughout their life, ongoing and adapted training for stakeholders, the organization of a "conference of consensus", the revitalization of home support, and social, educational, and professional integration.[99] It rejected the opposition between a "psychodynamic" approach and an "educational" trend, which Chossy said should receive priority. It asked for care corresponding to needs, a multi-year plan, and a ministerial circular "for the promotion of innovative and efficient actions, with programmed financial means".[100] This report was strongly influenced by the positions of Autism France.[55]
Recommendations of 2004 and first conviction
Lawyer Évelyne Friedel, president of Autism France at the time, referred the matter to the Court of Justice of the European Union on the issue of the lack of access to education for autistic children.[87] On 4 November 2003, the Court confirmed this breach,[92] which led to a first European conviction of France the following year, for discrimination.[87][59] The Autism Europe association supports the procedure, and highlights, in addition to the lack of access to education, the lack of specialized education, and a more restrictive definition of autism than that adopted by the World Health Organization.[92]
In 2004, the French Federation of Psychiatry and the High Authority for Health (HAS) developed professional recommendations aimed at enabling early diagnosis.[87] As a result of this first European condemnation, from 2005 to 2022, four autism plans will successively see the light of day: 2005–2007, 2008–2010, 2013–2017, and 2018–2022.[101] This awareness of the urgency of dealing with autism in France is motivated by various factors, including the increase in the number of people diagnosed and the ignorance of citizens and the medical profession.[55]
Disability Act of 2005
The disability law (2005), applicable to people with autism, aims to guarantee them equal rights and opportunities and constitutes the first French initiative in favor of the schooling of children.[55] According to Claude Wacjman, the term psychological disability, defined by this law, confuses and amalgamates in a single name what is due to both disability and psychopathology. According to him, this reinforces "the definitive impairment of functions, as if there was no hope of recovery, which we already noticed about madness and which reappears today concerning dangerousness and delinquency, in the manifestation of the need for control". He believes that by fixing disability in this way, this law stigmatizes it without hope that it will fade or disappear, and in no way facilitates access to education for all.[102]
The president of Sésame Autisme, Marcel Hérault, comments on this law in the journal Perspectives Psy, supporting the linking of autism to the field of disability: "Disability does not have an existence 'in itself', it designates a situation of the person at a given moment, and from this point of view there is no doubt that people with autism are indeed in a situation of disability". Hérault did not oppose the notions of illness and disability and emphasized the usefulness of psychiatry in the field of autism.[103]
First Autism Plan (2005–2007)
Jean Claude Ameisen, rapporteur for Opinion No.102 of the French National Consultative Ethics Committee, in 2015
As a result of the first European condemnation of France,[104] the first Autism Plan was launched in 2005. It allowed the creation of Autism Resource Centers (CRA), one per French region. It proposes an improvement in the training of professionals and more places in specialized institutions.[87] The plan recommends increasing the schooling of autistic children in mainstream settings, through improved training for parents, families, and teachers.[104]
In November 2007, the Comité Consultatif National d'Éthique(CCNE), contacted by five parent associations on 10 July 2005, issues its opinion no.102.[105] Very critical,[104] it incriminates a lack of support and highlights the distress of autistic people and their families.[106]
A society that is incapable of recognizing the dignity and suffering of the most vulnerable and disadvantaged individuals, whether children, adolescents or adults, and that excludes them from the community because of their extreme vulnerability, is a society that is losing its humanity.
—Conclusion of the CCNE report, 8 November 2007
According to this report, "the lack of early diagnosis, mainstream schooling and socialization lead to a loss of opportunity for children and to 'mistreatment' by default".[107] Its conclusions called for earlier diagnosis, individualized educational support, and access to adapted educational methods, in particular cognitive-behavioral programs (TEACCH, ABA, PECS, etc.), to promote learning of verbal and non-verbal communication.[104] It also called for the transitional use of drug treatments for the most serious disorders (anxiety, aggression, self-harm, etc.) and psychological and social support for families.[108][109] It was sharply critical of the dissemination of Bruno Bettelheim's thesis on "refrigerator mothers" as responsible for the unnecessary suffering of mothers of autistic children, and the absence of appropriate educational support.[110] He also added that "interesting forms of participation by psychoanalysts in multidisciplinary support and treatment methods based on educational approaches recommended at the international level" were under development.[111] He further emphasized the need for "access to a reliable and early diagnosis"[106] and "early and adapted educational care for the child, in close relationship with his family, allowing him to take ownership of his environment and developing their relational skills".[106]
The CCNE's opinion on psychoanalysis was criticized[112] by the psychoanalyst Boris Chaffel and the child psychiatrist Anne-Sylvie Pelloux, who considered the history of conceptual theories described as "reductive and truncated", and that it amounted to no more than a caricature of The Empty Fortress, which had had terrible consequences on the families of autistic children.[113] They argue that this opinion obscures the "innovative work" that followed and had given rise to an "extremely fine clinic" capable of "taking into account the subjectivity and creativity of each patient".[113]
Second Autism Plan (2008–2010)
Valérie Létard, initiator of the second Autism Plan, in 2007.
The second Autism Plan was launched in May 2008 by Valérie Létard. Over two years, it was slated to create 4,100 places in institutions for autistic children and adults. The High Authority for Health is entrusted with the creation of an international, scientific, and multidisciplinary knowledge base on autism. The National Agency for the Evaluation and Quality of Establishments and Social and Medico-Social Services (Anesm), is responsible for defining good practices. The High Authority for Health published this common base in January 2010.[109]
The credits from this plan financed seven experimental intervention projects in autism.[109] The plan also recommends easier access to diagnosis and support after it.[109] On 3 February 2010, the Committee of Ministers adopted a recommendation relating to the deinstitutionalization of disabled children, to respect the rights of the child.[114] Valérie Létard published the results of the second Autism Plan at the end of 2011.[115] Although all the objectives were not attained, 70% of the planned capacity for the program had been added. Schooling increased, with 25,000 autistic children now enrolled in the school.[116]
Year of Great National Cause (2012)
In 2012, autism was declared an important national mission, under the leadership of the Prime Minister at the time, François Fillon.[117] The year was marked by various awareness-raising actions and strong media coverage, a few months after the release of the controversial documentary Le Mur.[116] In January 2012, MP Daniel Fasquelle presented a "proposed law aimed at stopping psychoanalytic practices in the support of autistic people, the generalization of educational and behavioral methods and the reallocation of all existing funding to these GV 4 methods".[118]
In March, the High Authority for Health recommended certain educational, behavioral and developmental approaches following an evaluation: the ABA method, the Early Start Denver Model and the TEACCH program, affirming that "their effectiveness on the intelligence quotient, skills communication and language has been demonstrated in the medium term compared to eclectic practices, with an improvement for approximately 50% of children".[119] This report describes as not recommended, both the Son-Rise program, the 3i method, the Feuerstein method, the Padovan method, the Floortime method, the Doman-Delacato method and the use of the carbon dioxide-oxygen gas mixture.[120] It excludes psychoanalysis and institutional psychotherapy from consensual approaches to the treatment of autism: "The absence of data on their effectiveness and the divergence of opinions expressed do not allow us to conclude that interventions based on psychoanalytic approaches or institutional psychotherapy".[120] As for packing, "it is not possible to conclude as to the relevance of possible indications for wet body wraps (known as packing), even if restricted to a final and exceptional use. Apart from authorized research protocols respecting all the conditions defined by the High Council of Public Health (HCSP), the HAS and Anesm are formally opposed to the use of this practice".[121]
The report is controversial, both among promoters of cognitive-behavioral therapies and among psychoanalysts. The first believe that psychoanalysis should have been banned. Associations of parents of autistic children are calling for an immediate ban on packing in day hospitals and edical and educational institutes in the North.[116] Psychoanalysts criticize the report's methodology. For child psychiatrist and psychotherapist Anne-Sylvie Pelloux, the profiles of autistic children are extremely varied and the report reveals that "their evolving capacities also come in multiple variants which do not depend solely on their treatment methods", elements rarely highlighted in the media.[122] She also writes that "the recommendation does not reflect the complexity and richness of all the opinions of the experts solicited [...] even if only in the organizing committee, almost half of the group (12/25) expressed their total or partial disagreement with the recommendation". She points out in passing "the absence of a precise definition of psychoanalysis" .[122]
Reservations are expressed by the medical journal Prescrire, on the methodology for developing the recommendations of the High Authority of Health: "The development of this guide is based on the so-called formalized consensus method. But the term consensus does not reflect reality [...] This guide favors cognitive-behavioral methods, and dismisses other approaches without solid arguments. This exclusive choice is unsupported or poorly supported. It does not help primary care providers or families to make an informed choice".[123] CNRS research director Franck Ramus published an open letter, lamenting the journal's departure from its usual publication criteria.[124]
The third Autism Plan was announced on 2 May 2013, by Marie-Arlette Carlotti, who proposes ten measures to be implemented until 2017, including the generalization of early diagnosis at 18 months close to home, and the creation of 700 specialized teaching places in nursery schools, aiming to enable the integration of autistic children into primary schools.[125] Five actions are being carried out as part of this plan, which has a budget of 205 million euros: early diagnosis, support from childhood, support for families, research, and training of autism stakeholders.[126] An official website intended to centralize information validated by a scientific committee is put online by the Ministry of Social Affairs and Health on 30 November,[127] "to meet an imperative need for clear and reliable information".[128]
Political positions
In February 2014, the Council of Europe, seized on 3 April 2012, by the European Action for the Disabled, concluded that there has been a violation of the "right of autistic children and adolescents to priority schooling in ordinary law establishments" and of the right to the professional training of autistic young people, and also notes "the lack of predominance of an educational nature within specialized institutions caring for autistic children and adolescents".[129]
On 1 April 2016, Ségolène Neuville publicly recommended educational methods and opposed the blaming of mothers.[130] On 13 October, Daniel Fasquelle proposed a new resolution "inviting the Government to promote care for autism based on the recommendations of the High Authority for Health".[131] The resolution was rejected.[132]
Assessment of the third plan
Najat Vallaud-Belkacem highlighted progress in terms of schooling, with 26,347 autistic children having been educated in 2014–2015—compared to 23,545 the previous year—and 50 additional dedicated positions put in place for 2016–2017.[133] The report from the General Inspectorate of Social Affairs and the General Inspectorate of National Education pointed to three major weaknesses, in terms of epidemiology, involvement of the health professionals concerned, and management at the regional level, a consequence of the law relating to the delimitation of regions.[134] According to journalist Éric Favereau, while the public authorities had authorized budgets and despite real progress could be observed in school integration—with finer and earlier screening for children—the support was still very far from being sufficient.[135] This remained particularly true for adults.[134]
Fourth Autism Plan (2018–2022)
Édouard Philippe, Prime Minister of France, during the launch of the 4th autism plan (or autism strategy) on 6 April 2018.Ségolène Neuville, Secretary of State responsible for disabled people and the fight against exclusion
During the 2016 national disability conference, François Hollande announced the preparation of the fourth Autism Plan, for future application from 2018 to 2022.[136] Josef Schovanec was asked to develop a plan, relating to "the training, integration and professional activity of autistic adults".[136] This report for Ségolène Neuville was submitted on 16 March 2017 and proposed reviewing budgets to improve care.[137] In March and April 2017, a commission of international scientists (Swedish, Spanish, Belgian, Quebec, and American, in particular) was brought together to define good[138] intervention practices. The fourth plan, called the "autism strategy", included autism in general disability policies and other neurodevelopmental disorders, placed emphasis on better access to somatic care and education.[139] Recommendations for adults were published by the HAS in June 2017.[140] On 6 July 2017, the launch of the consultation was made official at the Élysée in the presence of President Emmanuel Macron, who gave a speech on this occasion.[141]
On 1 January 2019, a flagship measure of this plan, the early intervention package, came into force.[142] At the end of February 2019, the UN released its report on disability in France, pointing out institutionalization, an under-representation of autistic people themselves in decision-making, and violations of the fundamental human rights of autistic people.[143]
Diagnostic
At the beginning of the 21st century, France is moving closer to the international classification of autism spectrum disorders (DSM-5 and ICD-10), with the consequence of an expansion of the field of definition of autism, previously defined by "child psychoses", "disharmonies" (psychotic disharmony and progressive disharmony), and Asperger's syndrome, in the French Classification of Mental Disorders of Children and Adolescents.[78] The Autism plans have made it possible to improve the average age of diagnosis, but according to Professor Marion Leboyer (2013), "too many parents are victims of diagnostic and therapeutic errors which further delay the diagnosis and then care",[144] and many parents report difficulties in being heard by the medical profession.[144] In 80% of cases, the parents and those close to the children detect the first signs of autism around 2 and 3 years of age (rather at 3 years of age when the symptoms are more discreet, such as Asperger's syndrome).[47] In a quarter of cases, the first alert given by parents or those close to them to a health professional does not lead to any follow-up, which leads to a second or even a third appeal to a health professional.[145] The average age of diagnosis has fallen, but it remains well beyond the recommendations of the third Autism plan, standing at 5+1⁄2 years on average (2013). This average age of diagnosis tends to become earlier over the years. 25% of autistic children are diagnosed 4 years after the first signs are detected and 10% after 8 years. An Autism Resource Center makes the diagnosis in 30% of cases, a rate similar to that of diagnoses made by neurologists.[146] The late diagnosis is not necessarily linked to the French healthcare system, similar difficulties having been noted in other European countries.[147]
Early and reliable screening can be carried out from 18 months with the so-called M-CHAT test,[148] by a pediatrician, or by parents if necessary.[149] A more precise diagnosis in a specialized environment can be carried out with the so-called ADOS and ADI-R[150] test tools. The diagnosis of Asperger syndrome (which tends to be included in ASD) is notoriously more difficult, due to the less visibility of clinical signs and the absence of language delay. This diagnosis is made much later, and the delays are longer. A third of people diagnosed with Asperger's are not offered any support following their diagnosis.[151]Laurent Mottron pointed out in 2004 that "French health circles are slow to recognize pervasive developmental disorders without intellectual disability, whereas this category has been recognized in scientific circles since the end of the 1980s" . Health professionals are reluctant to make a diagnosis of autism or Asperge syndrome, favoring terms such as "autistic traits", "childhood psychoses", "pragmatic semantic syndrome" or "developmental disharmony". He concludes that "the diagnosis of autism, still too often considered a very serious handicap with a poor prognosis, remains reserved for people who are most affected in terms of behavior and cognitive development".[152]
Interventions
Video introduction to the work of building language skills in autistic children.
Intervention recommendations and expertise in autism in France are considered to fall within the medical field.[153] Depending on their social origins, their financial means and their geographical origin, autistic people in France experience very unequal situations. According to sociologist Brigitte Chamak, wealthy parents create their own establishments, send their children to private schools, or train themselves in educational and behavioral methods, sometimes becoming autism professionals, "but this is not the case of the majority of families who have even more difficulty finding help when their child has severe autism".[154] She notes that admissions to child psychiatry services concern "a high percentage of children from modest or disadvantaged backgrounds, mostly immigrants, while autism affects all social categories".[96] Support remains very limited for adults: according to Marion Leboyer, autistic adults, especially those who have been diagnosed with high-functioning autism or Asperger syndrome, are very often excluded from any care system, in due to a widespread belief that autism only manifests itself in children, only to disappear in adulthood.[144] The high health authority recalls that the fundamental rights of autistic people include dignity and privacy; a personal, private and family life; freedom of movement; decision-making; access to care; the diagnosis; consent or refusal of care; the exercise of civil rights (right to vote); housing; finally, compensation for the consequences of the disability to live and integrate into society.[155]
Psychological support
The genetic origin of autism in no way excludes the usefulness of monitoring and psychological support.[156] Some people think that France only offers psychoanalytic follow-up to autistic children. According to Hervé Bentata, strictly speaking there is no "psychoanalytic treatment of autism in the sense of a classic treatment on a couch and isolated from other treatments" in France, but rather "support psychotherapeutics" which are based (among others) on psychoanalytic theories, aiming to "promote the relationship with others and with the therapist, and the reduction of anxieties". This support presupposes that autistic children have experienced "affective impasses in their development with often massive anxieties".[157]
Autism Resource Center
The twenty-six Autism Resource Centers (CRA in french), one per French region and four overseas, are dedicated to welcoming, advising and listening to anyone affected by autism. They do not make diagnoses themselves, but are generally located next to medical establishments with a multidisciplinary team and differentassessment tools.[158]
Disability organizations
The departmental centers for disabled people (MDPH in french), created by the 2005 law, are an important partner in supporting autistic people. Their function is essentially to respond to administrative procedures.[158] A medico-social support service for disabled adults (SAMSAH in french) can take care of social, family and professional reintegration. Generally speaking, according to Catherine Barthélémy and Frédérique Bonnet-Brilhault, the more the person is disabled and/or considered to be in deficit, the less support there is in terms.[159]
In France, the association of autism with the field of disability causes uneasiness. Most associations and organizations in the field manage autism, but it is not always taken into account, due to a feeling of media over-representation and a perception as a "minor" disability, the gap between associations for autism and the environment of disability remains profound.[160]
According to the IFOP survey carried out in March 2016, 79% of French people think that autistic people are victims of discrimination.[161] Many prejudices wrongly generalize to their characteristics such as violence, capriciousness, insensitivity, and withdrawal.[136] French society has difficulty "accepting difference, dealing with those who do not fit into the norms".[162] According to Brigitte Chamak, the negative representations of autism in France "is linked to the fact that the term "autism" was used for a long time only to designate serious cases of disruption of communication and social relationships".[163]
In Je suis à l'Est!, Josef Schovanec testifies to negative generalizations about the way that people with autism express themselves, interact, or move.[164] According to his report, there is "almost no correlation between the entropy of a life course and the potential of the person". He notes that "autistic people who have had a linear life course are extremely rare. The dominant statistical norm – indeed almost unique in the matter – is the alternation of phases of greater or lesser inclusion, of various types of precariousness, with multiple interruptions of course and long periods without solution". The most difficult periods of life are generally early adulthood, marked by psychological disorders with a high rate of rape targeting women.[165] People who live in specialized institutions change environment when they reach the age of 18, often involving less support and therefore less opportunity for them to progress.[166] Access to somatic care is often difficult, for both children and adults.[166][167] Over time, the latter may show a form of resignation, due to real or perceived failures.[165] Most French autistic people bear "the sometimes devastating effects [...] of years of dropping out of school, of medical and social exclusion, often of great precariousness and marginality, when it is not violence".[168] Josef Schovanec adds that social development depends more on the quality of the living environment than "on an alleged degree of autism".[168] The EESC report (2012) highlights that:[169]
The economic crisis that our country is experiencing can amplify rejections of those who are not considered "normal" and cause autistic people and their families to bear the financial and social burden of support
—Economic, Social and Environmental Council, The economic and social cost of autism
The suicide rate of autistic people "is part of the taboos of public debate" in France,[170] their mortality has not been the subject of any study.[170] A comparison with figures from British studies indicates a suicide rate nine times higher than that of the general population, double in women compared to men, and excess mortality due to epilepsy.[170] Autistic people also encounter significant difficulties in passing the driving license exam[171] and in finding accommodation, the cases varying depending on the degree of independence.[172]
The question of deinstitutionalization is the subject of numerous debates. People in institutions are not necessarily more precarious than those who live in ordinary environments, since their primary needs are provided for (food, homeothermy, housing).[173] Cases of extreme marginality are probably numerous, with autistic people supposedly autonomous being the most exposed to loss of home, particularly among men who have never been placed in a specialized institution, at the time of the death of their parents.[174]
One of the ways in which these prejudices against autism are entrenched in France is the frequent use of the word "autiste" as an insult in the French language, associating the disability with a tare.[175] According to Alexandre des Isnards, "autistic has become a common term which designates any strange, unsociable person".[176] According to the online Larousse dictionary, the word "autism" designates "figuratively, by exaggeration" a "denial of reality which pushes one to isolate oneself and refuse to communicate, and, particularly, to listen to others".[177] However, this view of autism is absolutely false, since autistic people see and hear what is happening around them.[178]
According to the Jean-Jaurès Foundation survey (2016), 72% of French people say they are shocked by the use of the word "autistic" by public figures to insult, or designate something negative.[161] According to the SOS Autism France association (Olivia Cattan), one in 10 French people have already used the word "autistic" as an insult with the intention of making fun of a third party, mainly among young people aged 18 to 24 (in 29% of cases).[85] It seems that this negative shift in the meaning of the word "autistic" has accompanied the more frequent representation of autism in the public sphere[175] It was reported in 2006 by Danièle Langloys (president of Autisme France), for whom "France [...] is the only country in the world to find it normal for someone to be autistic to be publicly insulted".[179] She explains it by the psychoanalytic exception associating autism and psychosis.[179] Thus, "autism very often remains associated with a psychiatric or psychological illness in the collective imagination"[175] which promotes a negative image.[175] For Patrick Sadoun, "using the terms autistic or Mongolian as an insult is to offend the very personality of all autistic people or all people with Down syndrome, it is the same thing as using the terms Jewish, Arabic or homosexual as an insult".[180]
In French playgrounds and university corridors, the word "autistic" has become a fashionable insult, often replacing the word "Mongolian".[85][181][175][182]Olivia Cattan highlights the existence of this insulting use in discussions on the Internet and in everyday life, on the part of people who do not perceive the stigma thus created.[85] These insults are also present in the media and the French political sphere, in particular, Michel Sapin (2008),[183]Bruno Le Maire (2015)[184] and David Pujadas (2015)[185] have used them. On 25 February 2017, Vanessa Burggraf and Yann Moix compared an autistic child to an "idiot" who is "not in very good shape" in On n'est pas couché.[186] On 5 March 2017, the candidate for the French presidential election François Fillon repeats "I am not autistic" three times, leading to 55 reports to the Superior Audiovisual Council and a controversial debate.[187] Professor of language sciences Julien Longhi analyzes it as a short circuit of "the semantic richness of the word "autistic", to polarize it towards a negative meaning", as well as "the sign of an internalized verbal slippage from clichés".[188] On February 8, 2019, a 23-year-old woman, Estelle, challenged President Emmanuel Macron on this political use of the word autism as part of the Great National Debate.[189] These media controversies have brought the word "autistic" to public awareness, but this is most often done without any real knowledge of the subject.[182]
The High Health Authority recommends the use of the expression "autistic person" rather than "person with ASD" or any other expression (such as "person with autism" or "autistic" in short) HAS17 2 .[155]
Access to education and leisure
Cover of a DVD distributed by Sophie Robert, designed to promote the inclusion of autistic pupils in schools.
The issue of schooling for autistic people is recent in France, due to the emphasis placed on care to the detriment of education until the 1980s.[190] The inclusion of autistic students in mainstream classes in primary and secondary schools only dates back to the 2000s[190] in particular to implement the disability law of 2005.[191]
The rate of schooling in ordinary settings in France has increased, but it only stands at around 20% of children and adolescents diagnosed as autistic in 2012[191] and what is more, often for a limited weekly time.[192] In 2014, nursery school teaching units were created, welcoming around 200 autistic students in 2016.[193] Older students are generally divided into classes for educational inclusion (CLIS in french) and then into localized units for educational inclusion (ULIS in french). There are no statistics allowing us to know the exact number of autistic people in school, with the Collectif Autisme estimating in 2011 that half of French autistic children are out of school.[193] The school enrollment rate remains very low compared to other Western countries. This problem has been highlighted by the Committee on the Rights of the Child and the Council of Europe. The fifth periodic report of the UN Committee on the Rights of the Child (23 February 2016) notes that "despite the implementation of three successive Autism Plans, autistic children continue to be routinely victims of violations of their rights. It notes, with particular concern, that the majority of autistic children do not have access to education in mainstream schools or receive limited, part-time education and do not benefit from the services of specially trained staff. promote their inclusion". Josef Schovanec underlines the great heterogeneity of the educational paths of autistic people, and the necessary dichotomy between skills in school subjects and social skills, often translated as a "lack of maturity" of the autistic student from an external point of view. Another difficulty lies in the distinction between what is perceived as easy and difficult by an autistic student.[194] Danièle Langloys highlights the conceptual and ideological opposition between the national education sector and the medico-social sector in France, making individual support for autistic students in class difficult, as well as the lack of school access for children. considered to have severe autism symptoms.[195] French teachers are generally not trained for autism.[193]
According to the Interministerial Delegation for the National Strategy for Autism: in 2022, autistic children were identified and referred to one of the 103 coordination and orientation platforms for autism within neuro-disorders. development (i.e. twice as many as in 2021), and the number of GEMs (mutual aid groups) was 656 as of 31 December 2021 (i.e. +51 compared to 2020).[196]
Parents without schooling or childcare solutions are often forced to look after their child themselves, at home. According to Olivia Cattan, French parents of autistic children also encounter multiple problems accessing other places of socialization such as sports halls and[85] conservatories. When autistic children have access to schools, they are frequently victims of violence.[197] The presence of a school life assistant (AVS) is often necessary, but they are generally not numerous enough or trained enough (2016).
The attachment in France to the possession of a diploma is a penalizing factor for autistic people, to the extent that most are self-taught.[198]
France is decades behind in the treatment of autism and explains that it has been condemned five times (2004, 2007, 2008, 2012, 2014)[129] by the Council of Europe for discrimination against autistic children, lack of education, schooling and professional training.[199]
According to the report by Josef Schovanec, delivered on 16 mars 2017, the employment situation for autistic people in France is poor, with initiatives in this area being in their infancy.[200] There are no statistical data,[200] particularly because a large number of autistic adults are not diagnosed as such.[201] Philosophical considerations linked to the anti-psychiatry movement lead to exclusion from employment, considering that any form of work would be alienating or a source of suffering.[202] The jobs offered to people diagnosed have long been limited to medical-professional institutes (IMPro), which generally do not meet their expectations nor take into account their social and sensory difficulties.[203] He underlines the existence of the "myth of the severely autistic" to justify the impossibility of accessing employment, while no data establishes a correlation between the supposed severity of the disability and the degree of professional skills, and that the disability of autistic people is susceptible to changes.[204] Thus, some companies announce that they are only looking for " Asperger "[173] profiles . Another difficulty relates to the aspirations of autistic people, generally preferring to work in discretion and anonymity.[205] It recommends ten sectors of activity adapted to the particularities of autistic people: professions in the army, translation-writing, professions in contact with animals and nature, art and crafts, mechanics, the sector libraries, IT, catering and hospitality, the autism sector itself, and finally the so-called "traditional" professions.[206]
The Jean-Jaurès Foundation survey (2016) received 81% favorable opinions on welcoming and working autistic people in .[207] According to the investigation by Sophie Le Callennec and Florent Chapel, only 1,000 to 2,000 adults diagnosed as autistic have a job in the ordinary environment in France, which means that between 300,000 and 450,000 of them would be excluded from the world of work, particularly among adults with invisible disabilities.
Research
Catherine Barthélémy, French researcher awarded for her work on autism.
Certain research units and French researchers have contributed to the advancement of knowledge in the field of autism. The pioneering team is that of the CHRU of Tours, including among others Gilbert Lelord, whom Feinstein considers "one of the best-known French autism specialists",[73] but also the neurologist Catherine Barthélémy, officer of the Legion of honor and prize of honor from INSERM in 2016, who with him created the first research unit dedicated to autism at INSERM in 1988.[208] This team also includes child psychiatrists Dominique Sauvage[74] and Frédérique Bonnet-Brilhault.[209][210]
Give bread to the autistic child's brain to grind, and you will see it phosphorate; he's just waiting for that.
—Gilbert Lelord
The Tours team is at the origin of the creation and application of exchange and development therapy,[74] a form of play therapy, using stimulation and mobilization.[211]
Neuroscientists
Two French researchers in the field of neuroscience were awarded the rank of Knight of the Legion of Honor, the psychiatrist and neurologist Marion Leboyer (in 2006)[212] and the cognitive psychologist Bernadette Rogé (in 2012),[213] also awarded in 2014 for all of his work on autism,[214] which has received international recognition.[10] Thomas Bourgeron team found the first monogenic mutation involved in a form of autism, in 2007.[215] Éric Lemonnier, a child psychiatrist known for his time at Brest University Hospital, is carrying out work on bumetanide.[216] Catherine Barthélémy, Laurent Mottron, Thomas Bourgeron, Marion Leboyer, Bernadette Rogé and Amaria Baghdali are part of the international scientific commission assembled as part of the preparation of the 4th Autism Plan. Laurent Mottron, a cognitive psychiatrist born and trained in France, moved to Canada in the 1990s in opposition to the psychoanalytic approach to autism.[217] He has participated in more than a hundred research articles, including one in the journal Nature, concerning the perceptual advantages and intelligence of[218] autistic people. Among the younger researchers in terms of career (2016), one of the most involved in neuroscientific work on autism is Franck Ramus.[219][220]
Psychoanalysts
Although Françoise Dolto is often cited for her psychoanalytic conception of autism, she has shown little interest in the subject,[221] considering like Bruno Bettelheim that a negative relationship with the mother causes autism.[222] Several authors nevertheless believe that Dolto is responsible for the perpetuation of misunderstandings relating to autism.[222][223][224][225] Richard Battes also implicates Maud Mannoni (1923–1998) in the dissemination of a psychodynamic conception of autism, which turned out to be false.[224]Serge Lebovici (1915–2000), open to neuroscience, nevertheless maintained a strictly psychoanalytic approach to autism.[226] Bernard Golse worked on the early development of archaic levels of psychic functioning, and the process of semiotization and symbolization in children.[227] Pierre Delion contributed to the practice and study of packing; his work on the subject was awarded the 2009 special prize of L'Évolution Psychiatrie.[228] Jacques Hochmann is the author of a Histoire de l'autisme[229] which addresses the evolution of the conception of autism in France, from a psychopathological perspective.[230] Henri Rey-Flaud wrote L'enfant qui s'est arrêté au seuil du langage,[231] a synthesis of "the history and genesis of the different approaches to autism" from a psychoanalytic perspective.[232] Marie-Dominique Amy worked on the primary communication of children,[226] Marie-Christine Laznik theorized that autism in children would be linked to the "failure of the establishment of the drive circuit".[233] In a Lacanian approach, which considers that in autism enjoyment returns to the edge, the latter being successively embodied by the autistic object, the double and the specific interest, Jean-Claude Maleval proposes, in "The autistic subject and his voice"[234] as well as in "The autistic difference", to focus the work with the autistic subject on the development of the edge, in order to regulate his affects and promote his socialization.[235]
Associative fabric and networks
There are many associations of parents of autistic children and/or autistic people (generally people diagnosed with Asperge) in France. Most national associations have their headquarters in Paris. Quality regional associations are also active.[236]
Parent associations
Olivia Cattan, mother of an autistic child and president of SOS Autisme France.
According to Brigitte Chamak, associations active in the field of autism in France were mainly created by parents, in reaction to institutional deficiencies, and poor relationships with health professionals.[56] They increasingly participated in public decision-making in the 2000s.[52] The meeting between these associations, and the politicians Simone Veil and Jean-François Chossy, plays a determining role in the evolution of the approach to autism,[91] in particular in the transformations of representations and diagnoses and interventions. According to Brigitte Chamak, "by favoring the adoption of broader diagnostic criteria, [they] rejected psychoanalytic interpretations, and contributed to redefining autism as a disability of genetic origin involving atypical development of the brain [...] .] however, the most deprived families are not represented".[237] These associations generally direct research towards the field of neuroscience.[56] The parents who run them are generally from the middle or upper classes, and mobilize legal resources, media, and different networks.
In 1962, the first association of parents of disabled children caring, among other things, for autistic children was created, the Association Serving Misfits with Personality Disorders (ASITP in French).[73][77] In 1983, parents and health professionals urged members of the ASITP to create the Association for Research on Autism and the Prevention of Maladaptations (ARAPI in French) in Tours, aiming to support scientific research in this field.[74] In the 1980s, new generations of parents founded the associations AIDERA (1983), Autisme Île-de-France (1983), La Garenne du Val (1987), Pro Aid Autisme, and Aria (1988).[238]
In 1985, two parent associations, including Pro Aid Autisme, supported the dissemination of cognitive-behavioral therapies, but the ASITP disagreed with this position.[74] In 1986, the dissension between parents supporters of CBT and the representatives of psychiatry-psychoanalysis Serge Lebovici and Pierre Ferrari led to their resignation from the ARAPI.[83] Three years later, this opposition led to the dissolution of the ASITP, and the creation of two ideologically opposed associations: Autisme France, which condemns French psychiatry-psychoanalysis, and Sésame Autisme, which continues to work with these approaches.[74][83] In the 1980s and 1990s, these two associations competed to claim ownership of autism actions.[239]
Several small parent associations came together to form Autisme France.[91] In 1991, a donation from the France Télécom Foundation enabled it to become the major French association in the field and to bring together a large number of parents.[74] It is devoted mainly to denouncing psychiatry-psychoanalysis, by appealing to different organizations in the name of ethics and VA 4 deontology.[89] Since 1989, it has carried out numerous actions, including the organization of scientific conferences and meetings with political figures. It is currently chaired by Danièle Langloys.[240]
Also active in France (2015) are the associations Vaincre autisme (formerly named "Léa pour Samy"), the Autism Foundation, Autists Without Borders, Autisme Europe[241] and SOS Autisme France, chaired by Olivia Cattan. Penelope Fillon is the godmother of Asperger Aide France, an association chaired by Elaine Taveau, of which she participates in[242] activities.
Eight associations including Asperger Aide France, Sésame Autisme, Autisme France, Autistes sans frontières, Pro Aid Autisme, UNAPEI, Acting and Living Autism, and the 4A (itself a collective of associations including Asperansa and the Ass des as) have come together under the name "Autism Collective". It declares on its website to bring together around 200 associations and to represent around 30,000 French families affected by autism.[243] The associations managing establishments (Sésame Autism, Autisme France, etc.) also play the role of employer.
Associations and networks of autistic people
At the beginning of the 2000s, according to Stéfany Bonnot-Briey, there was no structure representing autistic people themselves in France due to a lack of knowledge, which motivated the creation of an international association, SATEDI,[244] which was the first French-speaking association for the self-representation of autistic people to see the light of day.[245] She does not adopt communitarian positions.[246]
The Autistic Alliance, created in early 2014 by Eric Lucas, is an association of autistic people opposed to the "defectological" vision of autism which, in its reports published by the ONU,[247][248] denounces violations of international conventions by the French state.
A National Consultative Committee of Autistic People of France (CCNAF in French) was established, in the application of article 4.3 of the ONU convention relating to the representation of people with disabilities.[249]
In 2016, the French-speaking Association of Autistic Women was created.[250]
Since the 2000s, autistic people have organized meetings and dialogue on the Internet, via "Asperger cafés", blogs, and various associations such as Ass des as, Asperger Amitié[251] (active in the Paris region ), Asperger Lorraine (in the region of the same name) and Asperansa in the Brittany Region.[241] Josef Schovanec recommends two discussion forums for people affected by autism, that of the Asperansa association and that of SATEDI.[252]
Health professional associations
The first initiative to create an association including health professionals in the field of autism was that of the Association for Research on Autism and the Prevention of Maladaptations (ARAPI in French), in 1983, on the part of parents who first approached the psychiatrist Gilbert Lelord, very involved in[91] research work. This association is atypical, in that it has equal representation of parents and health professionals.[83]
French psychoanalysts Geneviève Haag and Marie-Dominique Amy founded the international coordination between psychotherapists and psychoanalysts caring for people with autism and associated members (CIPPA in French) in 2004.[226]
Representations of autism in the media and the French cultural environment
The word autism was almost unknown in the French media until the 1990s.[117] In October 1974, the ORTF broadcast a program by Daniel Karlin which presented the orthogenic school of Bruno Bettelheim to the general public, as well as his theory of The Empty Fortress . It has a long influence on the perception of autism in France by psychoanalysts, and subsequently created a controversy on the role of parents, in particular the mother, in the supposed development of autism in children.[253][254] Reports and articles caused controversy again in 1988, when the TEACCH method was presented to the public.[255] According to Brigitte Chamak, since then, more and more press articles have taken up the demands of the parent associations and the media coverage of autism has shifted towards an unqualified accusation of French psychiatry, in particular since January 2012.[256] The modification of the definition of autism and the increase in its prevalence have led to greater media coverage.[257] Josef Schovanec underlines a "bilateral misunderstanding" between the world of autism and the media, and a gloomy feeling on the part of the French associations.[258] Reports are regularly made about mistreating or dysfunctional establishments. According to Claude Wacjman, the public perception of autism is poor, with an American mass killer having, for example, been immediately described as autistic in the French media on 14 December 2012.[259]
A special evening dedicated to autism, on France 2 on 30 March 2016, achieved the second best audience score (PDA) among French television channels that evening, with 17% PDA and more than 3million viewers.[260]
Documentaries
Sophie Robert, director of the documentary Le Mur.
The Sésame Autisme association co-produced a documentary, La vie en miettes, which was broadcast on France 2 in the program Envoyé special on 20 January 1994.[239]Sandrine Bonnaire directed Elle s'appelle Sabine, a documentary released in theaters in early 2008, a sensitive portrait of her 38-year- old younger sister, institutionalized and out of school since she was 12. Sabine is presented as a young woman passionate about English and music, before her internment in a psychiatric hospital.[261]
In 2011, the release of the documentary Le Mur by Sophie Robert led to a long controversy over the treatment of autism in France. This film uses an absurd demonstration to show the gap between the discourse of psychoanalysts and the reality of scientific knowledge on autism.[116] The psychoanalysts interviewed filed a complaint against the director Sophie Robert, which led to the film being censored for two years. They were rejected in court in 2013, the judges considering that even if the words of the psychoanalysts appearing after editing were incomplete and sometimes devoid of the original nuances, they "have not been distorted".[262]
Sophie Révil directed the fiction documentary Le Cerveau d'Hugo in 2012, combining testimonies from autistic people and parents, through the fictional story of Hugo, an autistic person who we follow from early childhood to adulthood. adult. Broadcast on France 2 on 27 November 2012, it takes into account the evolution of knowledge on autism, in particular its biological causes.[263] American activist Alex Plank travels to France in February 2012 for his documentary entitled Shameful, denouncing the reasons for the situation of autistic people.[264] In November 2016, Dernières Nouvelles du cosmos by Julie Bertuccelli was released, featuring the non-verbal autistic poet Babouillec, who writes texts mixing philosophy and metaphysics.[265]
The romantic comedy Le Goût des merveilles, directed by Éric Besnard and released in 2015, features an autistic man who is both hypersensitive, close to nature, a genius in mathematics and computing, honest and disinterested in money.[266] The director received advice from psychologists, and lead actor Benjamin Lavernhe was inspired by the autobiographies of Daniel Tammet, Josef Schovanec and Temple Grandin, to play his character with Asperger syndrome.[267] Comparing the film to Rain Man, Thomas Sotinel, film critic for Le Monde, regrets that Asperger syndrome, which he describes as an "American import", is presented as "an addition of talents".[267]
In May 2018, Monsieur je-sais-tout by Stéphan Archinard and François Prévôt-Leygonie was released, a film featuring a young autistic footballer,[268] adapted from the novel by Alain Gillot, The repair surface (Flammarion, 2015).
The extraordinary film hors normes, directed by Olivier Nakache and Éric Toledano, was released in October 2019.[269] It is dedicated to autism through the work of two educators working in contact with children and adolescents and the action of their associations.
Autistic people
Josef Schovanec, writer, radio columnist and activist, is also the author of a government report on the employment of autistic adults in France.
Several autistic people, activists or not in the movement for the rights of autistic people, have written works and given conferences. Hugo Horiot, author of The Emperor, It's Me, received the Patient Words Prize in 2013,[270] and announced his candidacy for the 2017 French presidential election, under the slogan "A destiny for all!", to defend neurodiversity in reaction to the words of François Fillon.[271] Very hostile to psychoanalysis, he considers it "harmful".[272]
Josef Schovanec, polyglot, traveler, doctor and researcher in philosophy and social sciences, former student of Science Po Paris, was spokesperson for autistic people during the year of the Great National Cause, in 2012 Mon 7 .[216] The same year his first book Je suis à l'Est! was published, testimony of his life and reflections on the differences.[273] He also defends the benefits of travel for autistic people:[274]
Travel, like medicines in physical form, should be reimbursed by Social Security . I think in particular of all the autistic people, who have committed no crime, and yet spend their lives in closed establishments. What walls could contain their cries? What chemical straitjacket is the scandal?
—Josef Schovanec, In praise of travel for autistic people and those who are not autistic enough.
Julie Dachez, a social science researcher known in particular for her videos on YouTube, has written a comic strip about her daily life as a woman with Asperger, La Différence invisible.[275] In 2018 she published in your bubble: Autistic people have the floor,[276] a work combining theoretical reflections from her work and a personal and activist approach.
Émilien Hamel, baritone singer and composer, created an ensemble of autistic and non-autistic musicians.[277]
A certain number of French parents have made themselves known through publications and media actions, among others Danièle Langloys (Autisme France association)[278] and M'Hammed Sajidi (Vaincre l'autism association).[279] In 2000, Annie Beaufils, a divorced mother of an autistic child, denounced forced placements in institutions and accusations made against mothers of causing autism in their children, following a 33-day hunger strike.[280][10] At this same time, Paul and Chantal Tréhin, the parents of the artist Gilles Tréhin, actively campaigned with the Autisme Europe association against psychoanalysis, and encouraged parents of French autistic people to join associations.[92]
There are also testimonies from media personalities. Francis and Gersende Perrin recount the education of their autistic son in a biographical book, Louis, pas à pas (2012), testifying to guilt on the part of the French medical profession, and pleading in favor of the ABA method.[281] They then made (and starred in) a TV film inspired by their life journey, Presque comme les autres. Journalist Olivia Cattan, president of the SOS autism France association, also supports the use of CBT and highlights the suffering and social inequalities suffered by French families affected by autism. She recounts in her autobiography From One World to Another (2014) having traveled to Israel to follow the Feuerstein method with her autistic son Ruben.[85] In contrast to previously expressed opinions, television host Églantine Éméyé defends the practice of packing, which she states to have been beneficial to her son Samy in her autobiography The Toothbrush Thief (2015),[282] and during a report on France 5.[283]
Autism in France gives rise to numerous controversies. For his book A History of Autism: Conversations with the Pioneers, published in 2010, travel writer Adam Feinstein compared the situation in autism in different countries. He believes that France "remains retrograde", with 75% of people diagnosed with autism being, according to him, kept in psychiatric hospitals .[284]
Many controversies are fueled by disciplinary rivalries, competition between theories and approaches, and choices and methods of intervention. These "more harmful than fruitful" conflicts complicate and delay public policies on autism.[285] Jacques Hochmann denounces a "communitarianism in the battle of autism", opposing the activism of parent associations to that of autistic people.[286] Josef Schovanec underlines that the fear of communitarianism in matters of autism is typically French, this questioning not being current in Anglo-Saxon countries which, according to him, "do not sink into the much feared communitarianism".[287]
Lack of knowledge
According to Catherine Barthélémy and Frédérique Bonnet-Brilhault (2012), a significant gap persists between international scientific knowledge relating to autism and the practices observed in France in the field.[288] Many reception establishments for autistic children use scientifically invalidated theories: the audit of 96 social work training establishments with autistic people, in February 2017, shows that only 14% of them "offer content in accordance with the state of knowledge and in accordance with the recommendations for good practice", and that around fifteen present autism as an infantile psychosis. Several establishments directly oppose the recommendations and do not take adults into account.[289] Likewise, "the evolution of conceptions of the genetic determinants of autism in the specialized press intended for French social workers" is "not very representative of the emulation generated by this question in international biomedical literature". Autism is presented more as a medical pathology requiring therapeutic care rather than as a disability, despite the 2005 law . Social factors linked to autism are almost never mentioned in this literature. The lack of training in early detection of autism remains significant (2014), the waiting time in Autism Resource Centers can reach several years, before obtaining the diagnosis. Parents living in rural areas may be unaware of the nature of their child's disorders for many years, a problem to which is added that of erroneous or obsolete diagnoses (such as disharmonies ). Valérie Létard underlines that a significant number of health professionals, psychologists and social workers "refuse to question their knowledge and make it evolve".
A survey by the Autism Collective carried out in April 2010 concludes that 90% of French people do not know the prevalence of autism, and that one general practitioner in three does not know what it is.[290]The Jean-Jaurès Foundation notes that 73% of French people surveyed say they lack information on autism (March 2016).[161] According to the survey by Sophie Le Callennec and Florent Chapel (2016), the prevalence is unknown, with 85% of French people estimating that autism only concerns 5,000 to 50,000 people. The double lack of specialized training and knowledge of the needs of autistic people was raised by the EESC report (2012).[291]
According to Josef Schovanec, one of the most common misunderstandings is the belief that autistic people are mentally disordered: "affirming or implying through the course of the questions asked that autistic people are 'by nature' of psychiatric hospital, should be just as shocking and unacceptable as would be similar statements about the place of women in the family home.[292] He notes the persistence of the association between autism and children, probably linked to the use of the concept of infantile psychosis, which slows down measures in favor of adults.[293] He also believes that "the fight for the best dissemination of knowledge and good practices must be the first priority".[137]
According to Feinstein (2010), "many" French autism professionals continue to believe that parents are responsible for the condition of their children.[73]The refrigerator mother theory has caused suffering and misunderstanding, both for parents and for their autistic children, considered uneducable. It is at the origin of the current opposition between associations of parents and health professionals.[294] According to Brigitte Chamak, "the testimonies of mistreated parents are too numerous to be considered anecdotal: murderous sentences, followed by parents not based on their difficulties in living with a different child but because of their supposed responsibility, lack of structured interventions for the child, waiting for the "advent of desire", absence of real educational projects [...] Fanciful interpretations and bad practices have accumulated over time, generating resentment and animosity on the part of families".[257] Furthermore, Chamak notes that some psychiatrists refuse parents the diagnosis of autism and/or the application form for special education assistance, on the grounds that "these children should not bring money to the parents", and in defiance of the disability law.[295] She also notes that "services that adopt a psychodynamic approach favor interpretations that focus on parent-child relationships and produce judgments on parental skills" and that "parents who deem it unnecessary to continue consultations at the medical-psychological center are sometimes the subject of a report".[296] Furthermore, "when the methods used do not produce the expected results, it is the parents or children who are blamed for the failures. Rather than calling into question the therapies, the behavior of the patient and/or his parents is stigmatized".[297]
Olivia Cattan highlights the abandonment of professional careers by mothers who devote themselves full-time to their disabled child, due to a lack of available care facilities. According to her, single-parent or middle-class families are exposed to increased insecurity and isolation, the wealthiest families move to countries where care is better, and the poorest experience high social inequality, due to lack of means to properly care for their child.[85]
Interventions
According to a government report by Christel Prado (2012), the question of interventions is the subject of numerous "chapel quarrels" between the proponents of all psychoanalysis and those of all education, of which autistic people and their families are prisoners for many years.[169]
Psychoanalysis
A large number of parents of autistic children (via the associations which represent them[298]) and certain researchers (Nicolas Gauvrit[299] and Franck Ramus,[300] among others) speak out against psychoanalysis. Nicolas Alerini sees autism as a "symptom of antipsychoanalysis", in particular through the controversial figure of Bruno Bettelheim. The American researcher and international autism specialist Fred R. Volkmar was surprised by the persistence of psychoanalytic and psychodynamic approaches to autism in France, and compared this situation to that of the United States in the 1950s.[301] Dorothy Bishop and Joël Swendsen believe that the use of psychoanalysis persists in France on the basis of authority figures (Freud and Lacan) and circles of power and influence;[225] although Lacan did not work with autistic children, he continues to have an important appeal among French intellectuals in the field of autism, while intellectuals from other "less gullible" countries consider his "hidden verbiage a confused thought" with skepticism.[302]
According to the sociologist Cécile Méadel, in 2006, the psychoanalytical interpretation of autism was still widely used in the public arena and among care professionals, "still arousing the same solidarity and the same revolt" in a discussion list between parents, activated by the association Autisme France, on the internet.[303] There, they share "stories of painful episodes in which responsibility for the disability" is attributed to them.[303] Brigitte Chamak, who monitored French child psychiatric services for the purposes of a sociological study in 2009, notes that "psychoanalytic referents still appear to be very present in the training and interpretations of psychiatrists" in a Parisian service.[304] She adds that "parents no longer accept being considered incompetent, or even responsible for their child's autism",[96] and that psychoanalytically oriented psychiatrists are often pessimistic about the outcome to be expected from autistic children: "for the majority of psychiatrists who advocate a psychoanalytically inspired approach, it is a matter of getting parents to admit that they must resign themselves to misfortune and not expect miracles".[297] A study of specialist French-language literature available to social workers, covering 95 publications from 1989 to 2014, shows "a clear predominance of psychoanalytic and psychodynamic conceptions of autism, and a sustained presence of psychiatric conceptions".[305]
According to Laurent Mottron, "France has recently exposed the anachronistic and indefensible nature of the diagnosis and care that governed autism on its territory. There is agreement that a period has come to an end during which France was regarded as a sect on these issues in relation to the dominant rationality elsewhere".[306] Brigitte Chamak believes that "the autism situation in France is presented as a scandal linked to the psychoanalytical orientations adopted by French psychiatrists. This simplification of the problem does not make it possible to understand a complex situation which, in practice, is reflected in the lack of structures adapted to respond to the increase in autism diagnoses and the heterogeneity of cases".[307]
According to child psychoanalyst Maria Rhode, there is a widespread misunderstanding that psychoanalysts as a whole hold parents responsible for their children's autism.[308] According to Claude Wacjman, we should not oppose "school learning and care, education and therapy. At most, we can establish complementarity if we agree not to oust one of these terms in favor of another. In the treatment methods resulting from psychoanalytic theory, we have always made room for teaching and its basic learning. The only novelty in the claim for the educational dimension is the eviction of psychoanalysis".[309]
Packing
Packing, or wet wrapping, consists of wrapping the autistic person in cold, damp cloths, then gradually warming them. According to researchers David Amaral (American),[310] Laura Spinney (British)[311] and Bertrand Jordan (French),[51] this technique is used almost exclusively in France, the other countries having abandoned it, due to an international "scientific consensus"[310] against its use. Professor Pierre Delion believes that "the packing technique can prove extremely useful for the care of autistic and psychotic children". Jacques Hochmann judges it to be harmless and a provider of positive effects.[312] According to Brigitte Chamak, "parents who use it notice a reduction in self-mutilation. Rather than prescribing medications in large quantities and in high doses, as many of their North American colleagues do, certain French psychiatrists propose, in agreement with the parents, different approaches for which they are criticized".[313] M'hammed Sajidi ( Vaincre l'Autisme association ) notes contradictions in the arguments in favor of packing, with packed autistic children being, according to him, often medicated in parallel.[314] Packing is strongly denounced by parents associations, for whom it constitutes an abuse and a danger.[109]
Like the HAS and the ANESM,[315] the ONU Committee on the Rights of the Child (CRC) recommends a ban on packing in its report, submitted on 23 February 2016: "The Committee also notes with concern that the technique of "packing" (wrapping the child in damp, cold sheets), which amounts to ill-treatment, has not been prohibited by law and is reportedly still used on certain children with autism spectrum disorders".[316] On 21 April 2016, Ségolène Neuville asked French public establishments to stop using it, via a ministerial circular.[315] The bill for the ban on packing and its teaching in France was tabled on 10 May 2016, by a group of elected officials, including Daniel Fasquelle.[317]
Behaviorism and cognitivism
Cognitive-behavioral therapies (CBT) are also the subject of controversy in France. In her summary, CNRS emeritus research director Scania De Schonen recalls that CBT has been scientifically evaluated as effective in reducing (among other things) anxiety and anger specific to people with autism, which explains the HAS recommendation in their favor.[318]Laurent Mottron is more critical, emphasizing that "in the French-speaking world, the legitimate desire to get rid of the psychoanalytic burden for autism, still largely dominant in France", has led to an uncritical promotion of behavioral therapies, and a bias in their favor in the HAS report.[318] He explains it by the absence of questioning of these therapies by the French public.[319]
For the psychoanalyst Pierre Delion, the behaviorist orientation has become "the one and only doxa accepted by the political decision-maker". He accuses the promoters of these methods of "demagoguery", and speaks of a high level of hatred reached by the pressure groups .[320] Another psychoanalyst, Yannick Pinard, believes that the third Autism Plan amounts to blindly adopting what comes from the United States. According to him, this is an "instrumentalization of autism", and an unequivocal aberrant policy on the part of a government which sets out a "State policy with the accents of the Holy Inquisition".[320]
The psychoanalyst Hervé Bentata denounces "behavioralists who seek a hegemonic position to the exclusion of all other treatments, fighting against a largely imaginary adversary – "psychoanalysis" – and relying on studies of statistical results which we are beginning to perceive scientific limits and biases". According to him, behavioral therapies exclude "everything that makes a person special, their thoughts and their feelings", and operate in "pure training with reward and punishment". He is, on the other hand, favorable to cognitivist treatments, which "are based on the particular characteristics of the autistic child's thinking and cognition, and will attempt to establish learning and modes of communication in relation to these particularities".[157]
Brigitte Chamak reports a complaint of mistreatment against a center using CBT, given as an example by several parent associations, and in which the ARS noted dysfunctions. She also cites testimonies against the cost of behavioral methods, and the unsuitability of schooling compared to day hospitals. These facts received little media attention.[321]
Abusive placements
The placement of autistic children is a sensitive subject. According to parents testimonies, child welfare regularly requests the separation of autistic children from their family home. A French lawyer specializing in these cases says he handles around twenty cases per year. Parents associations denounce abusive placements due to confusion between autism spectrum disorders and abuse inflicted on children.[322] This problem was raised by the Committee on the Rights of the Child in its 2016 report: "The State party [France] should also ensure that autistic children are not subject to forced placement in institutions or administrative placements and that parents no longer suffer reprisals when they refuse the placement of their child in an institution".
In 2015, the Rachel Affair, involving the placement of the three children of a divorced mother on the grounds of Münchhausen syndrome by proxy and parental alienation syndrome, was heavily publicized by parents associations of autistic children, in particular by Danièle Langloys.[323]
Departures in Belgium and Switzerland
In 2007, around 3,500 French autistic children were hosted in medical and educational institutes in Belgium, in Wallonia,[324] a consequence, according to Chamak, of an "undeniable lack of places" for the "most severely affected patients".[325] Numerous testimonies continue to highlight (2014) that, due to a lack of places in schools or other places suitable for supporting disabled children, autistic children are sent to Belgium or Switzerland to be educated there, at the expense of the social Security. Some parents also believe that care is better in Belgium than in France.[73][326]
Maltreatment in institutions
The associations Vaincre l'Autisme and SOS Autisme France stood out in the 2000s and 2010s for accusations of deliberate mistreatment in care establishments.[327] In 2014, the Autism Collective estimated that 43.8% of French autistic people are or have been victims of mistreatment in establishments specializing in their reception. According to Sophie Le Callennec and Florent Chapel, human rights are not always respected there. They emphasize the administration of high doses of medication to keep staff calm, and cite cases of autistic people being forcibly strapped to beds, or confined in 10m2 cells, or forced to defecate beneath them. The reasons for this mistreatment are multiple, but more particularly due to the lack of staff and the inexperience of the nursing assistants left to their own devices.
Over-medication
The children's rights committee, but also autistic people Josef Schovanec[172] and Stefany Bonnot-Briey, raise the problem of overmedication by certain psychiatrists, affecting (according to Schovanec) particularly men young people "receiving three, even four or more different neuroleptics at the same time, particularly debilitating and long-term harmful drug cocktails [...] whose real purpose sometimes seems more to be to reduce the person to an elementary biological life and therefore not -disturbing for those around him than allowing him any development".[172]
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Popular books
Le Callennec, Sophie; Chapel, Florent; Schovanec, Josef (2016). Autisme: la grande enquête. Paris: les Arènes. ISBN978-2-35204-494-9.
Shore, Stephen M.; Rastelli, Linda G. (2015). Comprendre l'autisme. Pour les nuls. Paris: First éditions. ISBN978-2-7540-6581-8.
Testimonials
Cattan, Olivia (2014a). D'un monde à l'autre: l'autisme, le combat d'une mère. Essais-documents. Paris: M. Milo. ISBN978-2-315-00492-8.
Éméyé, Églantine (2015). Le voleur de brosses à dents. Paris: Robert Laffont. ISBN978-2-221-14633-0.
Perrin, Gersende; Perrin, Francis (2012). Louis, pas à pas. Le livre de poche. Paris: Librairie générale française. ISBN978-2-253-17334-2.
Pinard, Yannick (2016). Éducation et soin. Collection Accompagner-partager. Nîmes: Champ social éditions. ISBN978-2-35371-893-1.
Schovanec, Josef; Glorion, Caroline (2012). Je suis à l'est! savant et autiste un témoignage unique. Pocket ([Nouvelle] éded.). Paris: Pocket. ISBN978-2-266-24103-8.
Schovanec, Josef (2014). Éloge du voyage à l'usage des autistes et de ceux qui ne le sont pas assez. Paris: Plon. ISBN978-2-259-22223-5.
Other books
Messadié, Gerald (2013). 500 ans de mystifications scientifiques. Archipel. ISBN9782809810554.
Delion, Pierre (2009). Séminaire sur l'autisme et la psychose infantile. Érès. ISBN978-2749223384.
Bueltzingsloewen, Isabelle von (2016). L'hécatombe des fous: la famine dans les hôpitaux psychiatriques français sous l'Occupation. Collection historique. Paris: Aubier. ISBN978-2-7007-2364-9.
Danion-Grilliat, Anne; Bursztejn, Claude (2011). Psychiatrie de l'enfant. Paris: Médecine sciences publications-[Lavoisier]. ISBN978-2-257-20406-6.
Guéguen, Jean-Yves (2012). L'Année de l'Action sociale 2012 - Bilan des politiques sociales: Bilan des politiques sociales, perspectives de l'action sociale. Dunod. ISBN978-2100579198.
Le Page, Brigitte (2014). Connaître la Fonction publique territoriale (2ed.). Foucher. ISBN978-2216128303.
Des Isnards, Alexandre (2014). Dictionnaire du nouveau français. Paris: Allary. ISBN978-2-37073-008-4.
Sadoun, Patrick (2016). Autisme: dire l'indicible. Éditions L'Harmattan.
Juhel, Jean-Charles; Hérault, Guy (2003). La personne autiste et le syndrome d'Asperger. Presses Université Laval.
Allione, Marie; Allione, Claude; Hochmann, Jacques; Delion, Pierre (2013). Autisme: donner la parole aux parents. Paris: LLL, les Liens qui libèrent. ISBN979-10-209-0030-2.
Delion, Pierre (2007). La pratique du packing: avec les enfants autistes et psychotiques en pédopsychiatrie. L'ailleurs du corps. Ramonville-Saint-Agne: Éd. Érès. ISBN978-2-7492-0773-5.
Roudinesco, Elisabeth; Plon, Michel (2011). Dictionnaire de la psychanalyse. Le livre de poche. Paris: Librairie Arthème Fayard. ISBN978-2-253-08854-7.
Bourdin, Dominique (2007). La psychanalyse de Freud à aujourd'hui: histoire, concepts, pratiques. Rosny: Bréal. ISBN978-2-84291-610-7.
Zittoun, Catherine (2015). Sommes-nous bientraitants avec nos enfants?. Polémiques. Montrouge: Doin-John Libbey Eurotext. ISBN978-2-7040-1461-3.
Psychoanalysis articles
Laznik, Marie-Christine (2015). Touati, Bernard; Joly, Fabien; Laznik-Penot, M.-C. (eds.). La prosodie avec les bébés à risque d'autisme: clinique et recherche. Le fil rouge. Section 2, Psychanalyse et psychiatrie de l'enfant. Paris: Presses universitaires de France. ISBN978-2-13-055712-8.
De Guibert, Clément; Beaud, Laurence (2005). "Différence entre autisme et "psychose infantile": déficits d'unité vs d'identité de la situation?". La Psychiatrie de l'Enfant, Paris, Presses Universitaires de France. 2 (48).
Ponnou, Sébastien; Fricard, Blandine (2017). "L'autisme dans la presse spécialisée destinée aux travailleurs sociaux: évolution des discours, enjeux de pratique, de recherche et de formation". Phronesis. 4 (3): 22–35. doi:10.7202/1035270ar.
Amaral, David (2011). "Against Le Packing: A Consensus Statement". Journal of the American Academy of Child & Adolescent Psychiatry. 50 (2): 191–192. doi:10.1016/j.jaac.2010.11.018. PMID21241956.
Philip, Christine (2016). "Analyse d'une situation emblématique de l'autisme dans le cadre des réseaux sociaux (facebook): l'affaire Rachel". La nouvelle revue de l'adaptation et de la scolarisation. 75.
Baghdadli, Amaria; Beuzon, Stéphane; Bursztejn, Claude; Constant, Jacques; Desguerre, Isabelle; Rogé, Bernadette; Squillante, Maria; Voisin, Jean; Aussilloux, Charles (2008), "Le diagnostic précoce de l'autisme en France", Améliorer la qualité de vie des personnes atteintes d'autisme, Santé Social (in French), Paris: Dunod, pp.29–38, doi:10.3917/dunod.roge.2009.01.0029, ISBN978-2-10-051030-6, retrieved 25 March 2024
Diagnoses of autism have become more frequent since the 1980s, which has led to various controversies about both the cause of autism and the nature of the diagnoses themselves. Whether autism has mainly a genetic or developmental cause, and the degree of coincidence between autism and intellectual disability, are all matters of current scientific controversy as well as inquiry. There is also more sociopolitical debate as to whether autism should be considered a disability on its own.
Autism spectrum disorder (ASD) is a neurodevelopmental disorder that begins in early childhood, persists throughout adulthood, and is characterized by difficulties in social communication and restricted, repetitive patterns of behavior. There are many conditions comorbid to autism spectrum disorder, such as attention deficit hyperactivity disorder, anxiety disorders, and epilepsy.
The post-autistic economics movement, or movement of students for the reform of economics teaching, is a political movement that criticises neoclassical economics and advocates for pluralism in economics. The movement gained attention after an open letter signed by almost a thousand economics students at French universities and grandes ecoles was published in Le Monde in 2000.
Michelle Dawson is a Canadian autism researcher who was diagnosed with autism in 1993–1994. Since 2004, she has worked as an autism researcher affiliated with the Autism Specialized Clinic of Hôpital Rivière-des-Prairies in Montreal, Quebec, Canada.
Samuel Le Bihan is a French actor, known for his role in Brotherhood of the Wolf and TV series Alex Hugo. He was awarded a knighthood in the Legion of Honour in 2024 for his work on behalf of children with autism and their families.
The refrigerator mother theory, also known as Bettelheim's theory of autism, is a largely abandoned psychological fringe theory that the cause of autism is a lack of parental, and in particular, maternal emotional warmth. Evidence against the refrigerator mother theory began in the late 1970s, with twin studies suggesting a genetic etiology, as well as various environmental factors. Modern research generally agrees that there is a largely epigenetic etiology of autism spectrum disorders.
Jean-Claude Maleval is a French Lacanian psychoanalyst, member of the École de la Cause Freudienne and emeritus professor of clinical psychology at the University of Rennes 2.
Johann Friedrich Karl Asperger was an Austrian physician. Noted for his early studies on atypical neurology, specifically in children, he is the namesake of the former autism spectrum disorder Asperger syndrome. He wrote more than 300 publications on psychological disorders that posthumously acquired international renown in the 1980s. His diagnosis of autism, which he termed "autistic psychopathy," garnered controversy. Further controversy arose in the late 2010s over allegations that Asperger referred children to the Am Spiegelgrund children's clinic in Vienna during the Nazi period. The clinic was responsible for murdering hundreds of disabled children deemed to be "unworthy of life" as part of the Third Reich's child euthanasia programs, although the extent of Asperger's knowledge of this fact and his intentions in referring patients to the clinic remain yet to be ascertained.
Theo Peeters was a Belgian neurolinguist who specialised in autism spectrum disorders. During his career he emphasised the importance of understanding the "culture of autism", of empathising fully with individuals on the spectrum. He was the founder of the Opleidingscentrum Autisme in Antwerp, Belgium.
Alexander Plank is an American autism advocate, filmmaker and actor. He is known for founding the online community Wrong Planet, working on FX's television series The Bridge, and acting on The Good Doctor. At the age of 9, Plank was diagnosed with Asperger syndrome. Plank started Wrong Planet at the age of 17 in order to find others like him on the Internet. After the popularity of Wrong Planet grew, Plank began to be frequently mentioned in the mainstream media in articles relating to autism, Asperger's, and autism rights.
The Wall is a documentary film made in 2011 by Sophie Robert about autism and psychoanalysis, which became the subject of a court case in France. The alternative full name of the film is The Wall or psychoanalysis put to the test on autism.
Laurent Mottron in France, is a psychiatrist, researcher, and a professor at Montreal University. He is a specialist in cognitive neuroscience research in autism at the University of Montreal.
Autism-Europe is an international non-profit association located in Brussels, Belgium. The organisation is co-funded by the European Union.
Olivia Cattan is a journalist and author. She is also a campaigner. Cattan is president of "SOS autisme France" and honorary president of the campaigning feminist organisation, "Paroles de femmes" which she established.
Approximately 12 million French citizens are affected by disability. The history of disability activism in France dates back to the French Revolution when the national obligation to help disabled citizens was recognized, but it was "unclear whether or not such assistance should be public or private." Disabled civilians began to form the first associations to demand equal rights and integration in the workforce after the First World War. Between 1940 and 1945, 45,000 people with intellectual disabilities died from neglect in French psychiatric asylums. After the Second World War, parents of disabled children and charities created specialized institutions for disabled children for whom school was not accessible. In 2018, the French Government began to roll out a disability policy which aimed to increase the allowance for disabled adults to €900 per month, improve the digital accessibility of public services, and develop easy-to-read and understand language among other goals.
Julie Dachez is a French social psychologist, lecturer and autism rights activist. She's the author of Invisible Differences and Dans ta bulle!. In 2016, she became the first openly autistic person to defend a thesis on the subject in France.
Marion Leboyer is a French psychiatrist, university professor and hospital practitioner at the Paris-Est Créteil University (UPEC).
Various connections have been made between violence and autism within social narratives. According to public opinion, violent behavior is common for autistic individuals, but evidence does not support autism spectrum disorder (ASD) as a predisposition to delinquency or crime. Autistic people are likely to be victims of bullying, abuse and other violence.
Equine-assisted therapy or equine-assisted therapy on autistic people is a therapy using a mediating horse or pony. A session can take place on foot or on horseback. Equine-assisted therapy is one of the few animal-assisted therapies regularly studied for its effectiveness, and the most popular of all autism therapies.
The employment of autistic people is a social issue that is being addressed more and more frequently. People with autism suffer one of the lowest employment rates among workers with disabilities, with between 76% and 90% of autistic people being unemployed in Europe in 2014 and approximately 85% in the US in 2023. Similarly, in the United Kingdom 71% of autistic adults are unemployed. This is despite the fact, that "approximately 50% of people with autism spectrum disorder (ASD) have an IQ in the average to high range and do not have any additional physical needs." A 2014 study of 130 autistic adults in Australia concluded:
The findings confirm and expand upon existing evidence that adults [on the autism spectrum], despite their capacity and willingness to work, face significant disadvantages in the labour market and a lack of understanding and support in employment settings.
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