Autism in France: Psychoanalysis, Packing, Other Travesties

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France lags about four decades behind countries such as the United States and the United Kingdom when it comes to diagnosing and treating autism, says Danièle Langloys, president of the advocacy group Autisme France. Like Sajidi, many young people with autism are not identified early, when they stand to benefit the most from behavioral therapies — although rates of early diagnosis have improved over the past decade. Some people with the condition are never identified. One 2015 study pegs the prevalence of autism in France at 0.36 percent, well below the 1 percent reported in the U.K. and roughly 2.5 percent reported in the U.S. Among children who are diagnosed with autism, only about one in five attends a mainstream school.

The Council of Europe, a Strasbourg-based organization that focuses on human rights across the continent, condemned France five times between 2004 and 2014 for discriminating against people with autism. The organization said that France violates, among other things, the rights of people with autism to be educated in mainstream schools and to receive vocational training. In its 2016 report on France, a United Nations body of experts called the Committee on the Rights of the Child similarly expressed concerns that “children with autism continue to be subjected to widespread violations of their rights.”

Responding in part to these high-profile criticisms, the French government has taken small steps in the right direction. In 2005, several government ministries issued a memo calling for an ‘autism plan.’ That first plan offered new screening and diagnosis recommendations for autism. It also created ‘Autism Resource Centers’ in each of the nation’s administrative regions to screen children for the condition and offer advice to their parents about possible treatment options, financial help available, and so on. Also around that time, France’s official manual for diagnosing psychiatric conditions in young people, the “Classification Française des Troubles Mentaux de l’Enfant et de l’Adolescent,” stopped defining autism as a psychosis, bringing it in line with international diagnostic standards. Two subsequent government plans introduced specialized teaching units within some mainstream schools. They also added more regional centers and stepped up efforts at the centers to make earlier diagnoses.

But parents, scientists and advocacy groups say those plans didn’t go far enough — in part because of a lack of oversight. They are pinning their hopes on a fourth initiative that is under development. Details on this new ‘Plan Autisme 4’ are slim, but two key aspects are measures to increase access to specialized classrooms, and better job training and housing options for adults on the spectrum — who were largely left out of the previous plans.

To explain why autism services in France lag behind those in other countries, many experts point to the nation’s long-standing ‘autism wars.’ For decades, those favoring psychoanalysis for treating autism (mostly psychiatrists) have been locked in a heated debate with those who support evidence-backed behavioral therapies (mostly parents and scientists).

Psychoanalysis is a “dictatorship of thought” in France that, over the past 40 years, has become part of the national culture, Langloys says. In the 1950s, there were only about 150 psychoanalysts in France, compared with thousands in the U.S. By the early 21st century, though, the number in France had soared to about 10,000 — with a sharp increase during the late 1960s connected to a rise in anti-establishment politics. “Medicine was part of the establishment,” anthropologist Roy Richard Grinker explains in his 2008 book, “Unstrange Minds: Remapping the World of Autism.” By contrast, psychoanalysis was seen as a way to empower individuals against institutions.

Also in the late 1960s, the Austrian-American psychoanalyst Bruno Bettelheim published “The Empty Fortress,” which instantly became influential in France. In that book, Bettelheim noted that some characteristics of autism — a hesitancy to make eye contact, repetitive behaviors, a shuffling gait — were similar to what he had observed in concentration camp prisoners during World War II. He concluded that these characteristics arose from emotional deprivation. In the case of autism, he lay the blame on emotionally cold ‘refrigerator mothers.’ Around the same time, French psychoanalyst Jacques Lacan blamed overbearing ‘crocodile mothers’ for their children’s autism.

In a 2012 survey of 1,000 French adults, 22 percent claimed that some kinds of parent-child interactions can cause autism, and another 23 percent said the condition can result from stressful life events. These disproven ideas are also common among psychoanalysts in France.

In 2011, a large, systematic meta-analysis of early interventions for autism found no evidence supporting a psychoanalytic approach for the condition. Yet if French parents oppose it, they can face dire consequences — including the forced removal of their children to institutions or foster homes. Langloys says social workers can label a family as troublesome just for seeking out a second opinion. “Social workers know nothing but psychoanalysis, so for them the mother is always too fused or too cold,” she says. To them, she says, “it’s normal to take away her children.” Her association has counted several hundred cases of children being separated from their parents in the past 15 years. In 2014, Autisme France began offering its members access to legal aid services to help families facing court proceedings to remove their children.

One particularly controversial treatment in France is called ‘le packing.’ The child lies on a mattress while four aides envelop him in cold, moist towels as quickly as possible: first each leg and arm separately, then the whole lower body in one big towel and the upper body in another, then the entire body in a dry sheet, followed by a waterproof fabric and two more covers — layers upon layers. The child lies tightly wrapped like this for 45 minutes to an hour, during which time he is invited to “freely express his feelings, bodily/cutaneous sensations and somatic fantasies,” according to one 2011 paper. Pierre Delion, a psychiatrist at Lille University Medical Center who pioneered the practice, has written that it reminds him of the myth of Osiris, whose body was cut to pieces, scattered across Egypt and later reassembled. Packing, he says, serves to hold together the child’s ‘dismembered’ body, relaxing her and helping her feel whole. Rogé vehemently disagrees: “One can imagine that this is a real torture for children who don’t understand what’s being done.”

In 2011, several leading autism researchers, including Eric Fombonne, Simon Baron-Cohen and Fred Volkmar, signed a letter to the editor of the Journal of the American Academy of Child & Adolescent Psychiatry entitled “Against Le Packing.” In it, they wrote, “We have reached the consensus that practitioners and families around the world should consider this approach unethical. Furthermore, this ‘therapy’ ignores current knowledge about autism spectrum disorders; goes against evidence-based practice parameters and treatment guidelines.”

The majority of children with the condition are still not integrated into mainstream schools. Instead, they are often educated at day hospitals or other quasi-medical institutions, where, according to Rogé, they are usually left in a group while “the teachers go smoke their cigarettes or drink their coffee.”

The French government employs an estimated 50,000 ‘auxiliaires de vie scolaire’ (school aides) to accompany students with special needs, including autism, but these aides often have no autism training. There are also not enough of the aides to support all the children on the spectrum in France, Glover-Bondeau says. To close that gap, some parents pay out of pocket to have trained aides work with their children. Glover-Bondeau has spent thousands of euros over the years on courses to have people who accompany her son in school certified in ABA.

In July, 13 young people with autism, ages 7 to 21, met President Emmanuel Macron and his wife at their residence, the opulent Elysée Palace in Paris, to kick off the Plan Autisme 4. The event marked the start of an initial six-month consultation that addressed goals such as improving school inclusion for children after preschool, encouraging more research, training more professionals and meeting the needs of adults on the spectrum. Several nonprofit advocacy groups, such as Alliance Autiste and Autisme France, have published long lists of additional suggestions — including better teacher training, better job coaching for adults with autism and complete reimbursement for the services of psychologists and other kinds of therapists.

So far, the government has announced a few changes: In July, Sophie Cluzel, the secretary of state in charge of services for people with disabilities, promised that the monthly disability allowance for adults, including those with autism, would be raised by 10 percent, to 900 euros a month. In December, she created another 11,200 positions for school aides to accompany special-needs children at school.

Amidst all the wish lists and soul-searching, it’s important to remember what France already does well and can build on, Elsabbagh notes. “France has one of the most well-developed health and early childhood systems anywhere in the world,” she says. One of the benefits of the system is the increased availability of genetic testing, covered as part of routine care. A 2014 study found that only 27.8 percent of American parents say their child with autism has undergone diagnostic genetic testing; in France, that number is 61.7 percent. Scientists, eager to collect more data, and parents, eager for more explanations, both agree on the need for more genetic testing and research. “We believe that it is very important that funds and means are allocated to research in the genetics field,” Glover-Bondeau says. “As a parent, it might bring some relief to know the cause for our child’s autism.”

Like thousands of French children whose parents believe they have autism, Rachel’s six-year-old son had been placed by the state in a psychiatric hospital day unit. The team there, of the school of post-Freudian psychoanalysis, did not give a clear-cut diagnosis.

Rachel, who lived in a small village outside the alpine city of Grenoble, said she would go elsewhere to assess all three of her children. But the hospital called social services, who threatened to take the children away from her.

A consultant psychiatrist said Rachel was fabricating her children’s symptoms for attention, that they were not autistic, and that she wanted them to have autism spectrum disorder in order to make herself look more interesting.

Rachel’s children were taken and placed in care homes.

The children were subsequently diagnosed with autism and other issues, proving Rachel right. But despite a high-profile court battle in which parents’ groups denounced the “prehistoric vision of autism in France”, Rachel, who herself has Asperger syndrome, has still not won back custody of her children two years later. They remain in care with limited visiting rights. Local authorities insist the decision was correct

The “Rachel affair”, entering another courtroom appeal battle this summer, has become a symbol of what parents’ groups call the “state scandal” of the treatment of autistic children in France. The crisis is so acute that the centrist French president Emmanuel Macron has deemed it an urgent “civilisational challenge”, promising a new autism action plan to be announced within weeks.

e United Nations stated in its most recent report that autistic children in France “continue to be subjected to widespread violations of their rights”. The French state has been forced to pay hundreds of thousands of euros in damages to families for inadequate care of autistic children in recent years.

The UN found that the majority of children with autism do not have access to mainstream education and many “are still offered inefficient psychoanalytical therapies, overmedication and placement in psychiatric hospitals and institutions”. Parents who oppose the institutionalisation of their children “are intimidated and threatened and, in some cases, lose custody of their children”.

Autism associations in France complain that autistic adults are shut away in hospitals, children face a lack of diagnosis and there is a persistence with a post-Freudian psychoanalytic approach that focuses not on education but on the autistic child’s unconscious feelings towards the mother.

A 2005 law guarantees every child the right to education in a mainstream school, but the Council of Europe has condemned France for not respecting it. Pressure groups estimate that only 20% of autistic children are in school, compared with 70% in England.

She said parents were forced to fight a constant administrative battle for their children’s rights. “There are suicides of parents of autistic children … at least five in the last couple of years.”.

The row over post-Freudian psychoanlysis and autism in France has been bitter. Eighteen months ago, a group of deputies tried and failed to make parliament ban the use of psychoanalysis in the treatment of autistic children, claiming that the “outdated” view of autism as a child’s unconscious rejection of a cold, so-called “refrigerator” mother was denying children educational support.

Psychoanalysts, who have a powerful, leading role in French mental health care, criticised the campaign as “harmful” and defamatory.

In 2012, the French health authority stated that psychoanalysis was not recommended as an exclusive treatment method for autistic people because of a lack of consensus on its effectiveness. But most state hospitals still use the methods.

Parents insist that excellent professionals are present in France, but they are few and in high demand, with services patchy and varying by area.

I was told by local authorities: ‘Why are you insisting on school? Put him in an institution,’” said one mother near Tours of her high-functioning autistic seven-year-old who is now doing well academically. “In France, there is an autism of the poor, and the autism of the rich. If I didn’t have money and the skill to fight, my son would have ended up in psychiatric hospital.”

I was told by local authorities: ‘Why are you insisting on school? Put him in an institution,’” said one mother near Tours of her high-functioning autistic seven-year-old who is now doing well academically. “In France, there is an autism of the poor, and the autism of the rich. If I didn’t have money and the skill to fight, my son would have ended up in psychiatric hospital.”

When Gaspard Bigand was 3 years old, his pre-school teachers labeled him "different." But his parents got zero advice from the French education or health care systems, and it took two years for him to be diagnosed with autism.

The family's challenges were only beginning, in a country where only 20 percent of children with autism go to school. Despite France's lauded public health care system, it's shockingly behind the curve on providing basic education and therapy for people with autism. Seeking to change that, French President Emmanuel Macron announced a long-awaited, 340-million-euro autism plan Thursday.

The plan includes a push for earlier diagnosis, help for families, teacher training and research to better understand autism, a neurodevelopmental disorder marked by repetitive behaviors and impairment in verbal communication and social interaction.

Yet families and associations say the plan is unlikely to take the giant steps needed to catch France up with the United States, Canada, and other European countries.

Public awareness in France is surprisingly low, with some parents telling their children to avoid autistic peers. Many adults on the autism spectrum remain undiagnosed. French families who can afford it go to neighboring Belgium or across the Atlantic to get better treatment and care.

"You can't imagine the level of suffering and anger of the families," said Daniele Langloys, president of the association Autisme France. Langloys listed outdated therapy practices, lack of trained medical staff and teachers, and an obstacle course to gain access to school, care and employment.

Macron says his plan can change that.

Wearing a blue ribbon promoting autism awareness, Macron and his wife Brigitte visited a hospital unit in the Normandy city of Rouen and later a day care center that accepts children with autism — an exception in France.

In January, France's Court of Auditors estimated that, statistically, about 700,000 people live with autism in France. But the number of adults identified as being on the autism spectrum is only 75,000, despite an improvement in early diagnosis in recent years, the Court wrote.

The French government has launched a €340m (£297m) strategy in an effort to make amends for the country’s scandalous state treatment of children and adults with autism, which has been denounced by the United Nations as a “widespread violation” of citizens’ rights.

President Emmanuel Macron, who made the need to improve the education and rights of people with autism a part of his election campaign, said he wanted everyone “to be included in school and everyday life”.

The strategy was launched by the prime minister, Édouard Philippe, on Friday afternoon and intends, in the words of one government adviser, to “at last” give children with a neurodevelopmental disorder access to mainstream education in France – a legal right that they have consistently been denied.

There will also be a drive to improve support for autistic adults, only 0.5% of whom are in regular employment, and who are routinely admitted to psychiatric hospitals. The government acknowledged that an adult with autism in France is three times more likely to be in long-term psychiatric care than the rest of the population. Rights groups decry the treatment as inadequate and inappropriate.

In its most recent report on the subject, the UN says children with autism in France “continue to be subjected to widespread violations of their rights”. The French state has had to pay hundreds of thousands of euros in damages to families for inadequate care of autistic children in recent years.

On Friday, Sophie Cluzel, the disabilities minister, said: “Inclusion is at the heart of this new strategy”, and that the government would seek to fully integrate citizens who for too long had been “relegated to institutions”. Cluzel said there had been “a cultural problem” in France, whereby citizens who displayed difference had been ghettoised and shut away, denied access to everyday life.

The government’s plan intends to increase diagnosis and early years support. It said that until now autism diagnosis was poor and too late – almost half of autistic children in France are diagnosed between six and 16.

There will also be an increase in scientific research into autism – an area in which France lags far behind other countries.

The government also said it would train doctors, teachers and early years staff – and overhaul the way school support staff were trained and recruited – in order to ensure that all autistic children were guaranteed a place in school.

Danièle Langloys, the head of the group Autisme France, said it was “strong” of the government to now insist on delivering the legal right of education for all, but she wondered how it would force schools to comply.

Hugo Horiot, a French writer, actor and director who is on the autism spectrum and whose latest book Autisme, J’accuse argues the need for French society to fully benefit from autistic people’s skills and intelligence, told the Guardian that in order to honour its promises, the government needed to redirect state funds currently being poured into the hospital and psychiatric system to deal with autism.

Horiot said: “In terms of inclusive schooling, this is good, but €340m is a drop in the ocean. The question is: will the government now go looking for the €7bn that state auditors revealed in January is spent each year on autism? Will the government transfer those state funds away from the medical and hospital lobby and instead put it towards schools?”

Since the 1990s, change in France has been led by organisations formed by parents, incensed that the medical profession appeared to be blaming them for their children’s condition.

The campaign group Vaincre l'Autisme staged a series of demonstrations in 2012-13 denouncing psychoanalytic autism treatment. A 2011 documentary, Le Mur, attacked the psychoanalytic approach to autism, causing controversy when three psychoanalysts brought a lawsuit, and temporarily succeeded in banning the film. However, the case was overturned on appeal in 2014 – an indicator of the waning power of the French psychoanalytic lobby.

Increasingly, there is broad political agreement in France that psychoanalytic approaches to autism are discredited. A recent statement by the minister responsible for the new plan, Sophie Cluzel, that France needs to “put science back into the heart of autism policy” comes in this context.

My research, for example, studies the impact of Françoise Dolto, a child psychoanalyst, who in the 1970s and 1980s attained a kind of “national treasure” status. Dolto had a hugely popular radio show on the state broadcaster, France Inter, responding to members of the public who contacted her with child-rearing dilemmas. She launched a network of children’s centres, the Maison Verte, partly staffed by psychoanalysts.

She published over 40 books, in which she communicated psychoanalytic thinking to a broad audience, targeting mothers in particular. Her bestselling case study, Le cas Dominique (or in English, Dominique: Analysis of an Adolescent), showed how “childhood psychosis” could result from the family environment. Books like this are still on the shelves of many French parents, grandparents and psychologists. Hundreds of schools and hospital wings in France are named after Dolto.

From this influential platform, Dolto claimed that childhood “regression” – autism and learning disabilities – was caused by pathogenic mothering. In a 1985 book she defined autism as “a reactive process of adaptation to an ordeal” in which the “affective or symbolic relationship with the mother” has been lost. Such arguments, combined with Dolto’s opposition to feminism, and assumption that it was preferable for a child’s development if its mother stayed at home, surely contributed to feelings of guilt among mothers of autistic children. Her work also buttressed later resistance by psychoanalysts to changing how autism is dealt with in France, since Dolto – the founding mother of French child psychoanalysis – was so clear on the point.

Ah, the French. They have two extremes, one being the Lacanian psychoanalysis that is criticized as being too authoritarian, and rightly so; and the other extreme being the thought of Michel Foucault, who believed that criminals and schizophrenics, as marginalized elements, have more moral authority than the rest of us.

In any case, there is a major anti-psychiatry movement in France. Maybe this kind of thing is part of the reason why:

http://en.wikipedia.org/wiki/Anti_psychiatry

Read On!!: http://www.wrongplanet.net/article421.html

I will like to say in defense that most countries around the world only are starting to have some idea of what Aspergers/Autism is. In my origin country, it isn't known well at all. Just remember that we are at the forefront.