Category Archives: France

Autism in France

The post you will read by guest bloggers, Laurence Le Blet and Karen Hatungimana, and a linked essay by Nicolas Joncour, are about the situation for nonverbal autistic people in France currently. I was unpleasantly surprised to learn how behind France is in educating people who have autism or in supporting children and families. I have many complaints about the system here in my own community but I know that I have been very lucky too. While an unwelcoming school or an incompetent aide has been part of my experience and has negatively impacted me, it has not been my entire experience. The opportunities I have been given to get a normal education, to have a trained aide with me in school, to have the chance to get a college degree and even to become an advocate for people with autism has been a blessing I cannot take for granted. It is time to change the paradigm about autism in France.

“The Right to an Education”, Article Typed by Non-Verbal Autistic Piano Student with Dyspraxia

Guest Post

by Laurence Le Blet and Karen Hatungimana

The situation in France for autistic people has progressed very little for many years. The professional orientation of case-managing organizations, medical-social institutions and specialist doctors is still largely psychoanalytic. The National Health Authority, (HAS), does not recommend psychoanalysis, and specifically condemns the “ le packing” treatment (in which a patient, wearing only underclothes, or naked in the case of small children, is wrapped in towels and soaked in cold water for the stated goal of enabling the child to rid himself of “pathological defense mechanisms.”

Image result for le packing autism

Despite these recommendations, these treatments remain widely present and the national institutions have not caught up with new recommendations for autism treatment. These archaic and outmoded approaches are found in all institutions: justice, health, schools and in society in general. In fact, societal ignorance regarding autism is so pervasive that reports made on parents and subsequent social placements are many; children are always at risk of being removed from their parents custody.

Although autism has been officially recognized as a disability since 1996, the training of nurses and special educators is still mostly based on psychoanalysis and autism is widely seen as a psychosis. Consequently, children with autism are not encouraged to attend regular schools with their same age peers. Despite the legislative Act of 11 February 2005 on Equal Rights and Opportunities, Participation and Citizenship of Persons with Disabilities, the educational situation for autistic children has barely changed. Only 20% of autistic people are enrolled in regular schools, mostly not full time, and parents have to fight for their children to be and remain in ordinary primary school. Most autistic kids are referred to medical educational institutes or day care hospitals at a very early age (from kindergarten), where the right to schooling and the ability to participate in society is limited. Medical-educational institutes and day hospitals are supervised by the Ministry of Social Affairs and the Ministry of Health )

Another factor negatively affecting the ability of autistic children to attend regular school is due to the fact that many children do not have the necessary trained support. Children may wait a long time to obtain a personal assistant and until then, must remain at home. However, many assistants are not adequately trained nor do they have a good understanding about autism. Additionally, most schoolteachers believe that students with autism suffer when they attend a regular school and they believe the child should be removed from the school and referred to specialized institutions. When parents are not well informed of their child’s potential to learn, as well as their basic rights, (and most of the parents are not), they are pressured to enroll their kids in medical-social institutes. Those parents who believe in their kid’s potential and capabilities are accused of making their child suffer in a regular school, or are told that his presence in a regular school makes the teacher and other students suffer. Thus inclusion is strongly discouraged. There have been a few lawsuits by parents, however this is rare.

There is a lack of understanding of integration and inclusion concepts. Parents of children with autism who strive for inclusion have to overcome innumerable obstacles including: delayed or obsolete diagnosis, absence of proper care advice, fighting for financial support, and most significantly, the permanent anxiety of the psychiatric hospitalization of their children after their death because nobody would be there anymore to fight for them.

The Committee on the Rights of the Child (UNO) has issued its conclusions on the implementation of the Convention on the Rights of the Child.

Here is an excerpt:

The Committee urges the State party to take immediate steps to ensure that the rights of children with autism, , And that these programs are in conformity with the recommendations of the High Authority are authorized and reimbursed. The State party should also ensure that children with autism are not subjected to forced institutionalization or administrative placement and that the parents are no longer subjected to reprisals when refusing the institutionalization of their children. “

In France, despite there being laws and recommendations for good autism treatment, most are not widely known and they are not consistently implemented throughout society. Money that is designated to medical-social institutions would be better applied to education. Inclusion should be effective throughout the entire life of a person with autism.

France ‘s motto « liberté , egalité , fraternité »  should be for all.

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Theories that Bind Us

As a person with a severe movement and mind body connection disorder, coupled with a variety of sensory processing issues that affect my ability to take in normative auditory or visual input at times, I look and act like I have autism. The reason I look and act like I have autism is because this is what autism is. These issues affect my movements and lock me into motor pathways that may become embedded and intrusive and affect my presentation of myself to the world. I may write more in the future about what I have learned about autism and sensory processing and how it affects us, but today I want to address theories.

The obvious treatment for a sensory and movement disorder affecting all motor issues like handwriting, facial expressions, gesture, speaking, ability to sit for long periods, feel your own body, make eye contact, get out of perseverative motor patterns called stims, initiate, visually scan for items, and  be able to show our innate intelligence, would be to focus on movement and to address sensory challenges. Few professionals do this, but some do, like Soma, as well as movement and exercise specialists.

Theories about autism by people who have degrees, titles and prestige but little understanding of autism have been the norm. I have recently learned that in France where I can eat a baguette and enjoy a café aux lait in the shade of the Eiffel Tower, I would also be treated with psychoanalysis for my “mental illness” because in France my symptoms are due to my emotions, not my neurological disorder. In psychoanalysis I would lie on a sofa mute, because I can’t talk, but my silence would be blamed not on my motor/mind communication, but on my parents, specifically my mother. They will say she created my autism by coldness and rejection of me, despite all evidence to the contrary. Moreover, treatment will include “Le packing,” wrapping me tightly in cold, wet sheets for some bizarre reason. I may only be a person with autism, and not a brilliant French psychoanalyst, but I would like to try this treatment on you, you arrogant know-nothing.

Here in ABA-land, theories are equally misguided, but less cruel. Still, 40 hours a week of touching flashcards won’t help a toddler who may have an inability to focus visually, or hear speech distinctly in a sea of sounds, or be able to move the way he wants, to gain the sensory control or muscle control he needs to be able to communicate or show his intelligence. That’s because ABA believes autism is a severe learning disability that is treated by drills, rewards and baby talk. This makes recognition of the motor challenges nearly impossible because all the  data from the child’s success in performing the drills is interpreted as a measure of how much the child understands speech, and not of whether the child can get his body to move correctly. Therefore if a child is told to jump and he doesn’t jump because he can’t get his body to move at that moment in that way, his failure is chalked up to a lack of understanding the word ‘jump’ even if he damn-well understands the word ‘jump’ and everything else. To interpret data solely based on the  belief that a person’s actions are an accurate reflection of their comprehension of speech, leaves out the possibility of helping this motor trapped person address his real needs.

Did I mention it’s 40 hours a week?

Autism treatment is big business, here or there. Change therefore will be slow.

Living in the Past

I hear from many people from different countries regarding autism. As bad as I feel about our understanding of autism here in the US and how hard it remains for so many people, I now understand how much worse it is in other countries. My life has been liberated by communication. I have many challenges, but also opportunities. Most significantly, my school district allowed me to be educated in regular classes once I proved my intelligence by typing on a letter board. Now my improved skills in handwriting and typing on an iPad are making my life easier still, but I have a long way to go.

Many times I feel down and I realize how hard it is to overcome my body, but I also know I am improving and I practice motor issues daily to work on my mind body connection. But the letters I receive  tell me how it is in other countries where autism treatment is stuck in the 1950s where belief in “refrigerator mothers” causing autism and treatment by psychotherapy still rule. This is in developed countries, mind you.

How do they treat polio? Do they still use iron lungs or do they immunize? It’s inhumane. If you live in France, or other countries treating autism this way or in other outmoded ways, please share your experiences with me.

But I also know that some countries are stuck even further in the past, in the 19th century, Victorian asylum mode. I need to help change things. How do you think we can do it?

"French Autistic Kids Mostly Get Psychotherapy"

The idea of treating autism as a mental illness is incredible. I somehow intuit that Bettelheim’s influence is at work in France where they still treat autism with psychotherapy. I don’t think much progress will be made though by emphasizing the wrong treatment. That being said, I did see a therapist when I was twelve, but she didn’t treat my autism. She helped me to accept myself with autism because I was getting so sad about my limitations. However, in no way could she have cured me of my neurological issues. Anyway, this is my insider’s point-of-view.