Support The Wall – Le Mur

A project of Autism Rights Watch against censorship in France

This article on packing was published originally in French on the “Soutenons Le Mur” website on January 11th 2012.

Translation: Karen Wilshin

This Q&A article attempts to explain the practice of “Packing”, the technique for wrapping children with autism in cold, wet sheets, why it’s a problem, what’s being done to stop it and what’s blocking progress. Written by Olivier Bousquet and David Heurtevent, it gives an introduction to the practice. For more detail, you can read the full article by Olivier Bousquet published in Autisme France’s letter n°49 of November 2011 (in French)

On 6 January 2012, the website of Michel Balat published a response from Pierre Delion, Head of Child Psychiatry at the University Hospital in Lille, in response to our challenging the support of Martine Aubry, First Secretary of the Socialist Party (Translated in English). In it he recognises that of dubious practices exist. Pierre Delion writes in his “explanatory note”: “I can only answer the practices conform to my teaching over very many years, and I am aware that more dubious initiatives could be incriminated as they deviate from medical practice and ethics.”

What is “Packing”? A “barbaric” practice for autistic children!

By Olivier Bousquet, nurse and David Heurtevent, Asperger, MA Georgetown

What is Packing? Would you try it?

France continues to use a psychiatric technique called “Packing”, like something from the Middle Ages, which consists of wrapping children with Autism Spectrum Disorder (A.S.D.), naked, or in their underwear, in cold wet sheets (at 50°F, 10°C), like mummies. Some teams even put the sheets in the refrigerator before using them. The patient lies on a table, with two therapists, one on either side. Each session lasts for around 45 minutes, and sessions can be repeated up to 5 days a week, for years. It doesn’t matter whether the child can speak. Today, who would choose Packing, for themselves or their children?

There is a photo report in “L’Express” magazine “Autism: what happens during a “Packing” session?”

Where is Packing carried out?

Today, in 2012, this technique is still used in 300 establishments in France. It is often cited in lists of therapeutic methods, mediation or physical techniques.

Has Packing been scientifically evaluated?

Surprisingly, Packing has been used on children with autism for over thirty years despite having never been subjected to any evaluation other than some adult case studies. The only clinical study, currently under way, claiming to measure the effectiveness of Packing on children is using children undergoing the same technique, but with dry sheets as a control group.

This trial, authorised by the French health authorites shows a willingness to evaluate a precise indication concerning extreme situations. However, outside the reference test protocol (PHRC 2007/1918,No Eudra CT :2007-A01376-47), Packing continues to be practised and taught for a much wider range of indications on the autistic spectrum as well as for other pathologies, with different concepts.

The French state has already proven its partiality when dealing with associations denouncing the practice. In June 2009, the minister Roselyne Bachelot wrote to the association Vaincre L’Autisme (Defeat Autism) which was demanding a moratorium. “Given the feedback received, I do not feel it is necessary to demand a moratorium at this stage”
So the French state actually supports the use of this invasive and unproven practice

What are the aims of Packing, why do it?

Packing is an activity with a psychoanalytical psychotherapy aim, claiming to repair the relational problems a child with A.S.D. developed on contact with its parents. Restoring body image or reducing self-harming are other arguments put forward. It should be noted, however, that no international recommendation nor evaluation exists which recommends the use of psychoanalytical theories in dealing with autism.

How do you think the children perceive being Packed?

Put yourself in the place of people with A.S.D. Often their sensory and physical perception is ultra sensitive and extremely variable. Given their differences in communication and social interaction, how can a child give their clear agreement? The third sign, repetitive actions, might mean that they see Packing as a routine, something they have to do as part of their daily timetable. The mere fact of convincing the child to do this activity may lead to a manipulative game of seduction.

Why does Packing put the child at increased risk of sexual aggression?

The practice of Packing opens the way for sexual abuse: the child, accustomed to being in their underwear in front of adults for an activity they do not understand, loses the ability to distinguish between strangers and their carers and parents. At best, they might simply be confused. At worst they will find it normal to undress in front of adults who may wish to harm them. How can these children ever learn the basic social signposts to be able to protect themselves from sexual aggression?

Unfortunately the real risks of these sessions have never been examined. The question of this educational risk, the risks of interaction and surveillance connected to treatments using tranquillizers or the risks with illnesses associated with autism, such as epilepsy, have not been studied.

Why do parents and doctors approve this practice?

It is difficult for parents to refuse a doctor’s prescription for Packing, as in France, the same doctor has multiple roles: drawing up the application for financial aid for people with disabilities; dealing with social security authorities and deciding the child’s educational future.In France, it is very rare that children with autism go to school: only 20% of children with A.S.D. attend school.

In any case, the doctor has the legal right to dispense with parental agreement and it happens!

What is the opinion of the Government and the Health Authorities on this question?

Packing is officially authorised and financed by public money in public hospitals, in spite of:

  • advice from the National Institute for Medical Research in 2004, saying that it would only accept educational programmes which would help children with A.S.D. to make progress.
  • advice from the National Consultative Committee on Ethics in 1996 and 2007, denouncing the use of psychoanalytical psychiatry.
  • 2010 recommendations from the National Agency for the Evaluation of Services and Community Health Establishments which specified that “the psychological characteristics of parents are not a risk factor in the occurrence of invasive developmental disorders. The theory which states that invasive developmental disorders in children are caused by a dysfunctional relationship between mother and child is erroneous.”

Despite all that, the opinion of the High Council for Public Health in February 2010 concerning the risks of Packing for patients under the age of consent with invasive developmental disorders was that: “given the absence of notable risks identified to date, the practice of Packing presents no risk which would justify its prohibition.”

In 2010 the French National Authority for Health indicated: “For psychoanalysts, autistic processes, whatever their cause, are linked to the archaic anguishes found in children presenting invasive developmental disorders. These anguishes lead them to react using defensive mechanisms which progressively isolate them. The different measures proposed aim at enabling the expression of these archaic elements in a relationship with a therapist. “

But what are autism associations doing? What’s stopping them?

In France, the world of autism associations is still fragmented, with a multitude of groups. Certain parents are clearly afraid that their child will be returned to them if they stand up to the institution. Certain associations are also afraid of losing the meagre financial support they receive from the government or local authorities.
For years, national and international associations have been trying to outlaw this practice, by multiplying their petitions to the French political authorities. These organisations constantly point out that other more respectful practices exist which are the subject of international consensus on caring for people with autism.

In 2009, the association Vaincre L’Autisme launched an unsuccessful campaign against the French government to obtain a moratorium. Instead, the minister Roselyne Bachelot of the UMP party asked for advice from the High Council for Public Health. At the end of 2011, Martine Aubry, First Secretary of the Socialist Party and former minister expressed her support for “Pierre Delion, a proponent of Packing, support which she re-confirmed at the beginning of 2012.

Our political leaders are afraid to make a decision or to speak out one way or the other. Almost as if the psychoanalytical psychiatry lobby has a disproportionate influence…

What hope is there?

We are stuck at a dead end in France. Fortunately there has been a surge of support from the international scientific community with the signing of the International manifesto against Packing
The Journal of the American Academy of Child and Adolescent Psychiatry. published a joint letter from several major researchers in the field of autism condemning the practice. PubMed or JAACAP

In fact the situation is much more serious than just Packing: the dramatic situation of autism in France
Packing is in fact just the tip of the iceberg. The vast majority of doctors continue to use diagnoses which are not recommended but which are tolerated by the authorities, such as infantile psychosis or infantile depression instead of autism. International classifications and progress in research are systematically denied or distorted.
France was already condemned in 2004 by the European Committee of Social Rights of the Council of Europe for failing to respect the right of people with autism to have access to education.

This resolution followed a collective claim by Autisme-Europe against France (claim no 13/ 2002, decision 4 November 2003). The decisions in detail can be downloaded here.

In 2007, the National Ethics Advisory Committee in its opinion N°102 once again pointed the finger at the persistent exclusion of people with autism in France.

The changes implemented by successive government “Autism Plans” 2005-2007 and 2008-2010 are far from satisfactory, as was highlighted by Autisme France at the end of 2011.

We are powerless. We are still unable to ensure that the rights of people with A.S.D. in France are respected:

  • Diagnosis is often made at 6 or older, whereas autism shows up in the first months of life,
  • Children are taken out of school and dumped in institutions, whereas 70% of children with autism in the UK go to school, and can be educated,
  • Because there are insufficient places in these institutions, many parents have no other choice than to keep the person with autism at home, which can cause problems as parents get older.
  • Schools run by associations, using best practices, often receive no financial support from the government,
  • Even worse, some parents choose to leave France, or exile their child in Belgium, whether at the Belgian government’s expense, or in medical structures sub-contracted by the French Social Security system!
  • In France there is only one Masters course teaching scientific psychology whilst many universities continue to teach false information on autism
  • Even the most prestigious universities continue to teach information which is outdated
  • Professionals trained in good clinical practice and recommendations are in an extreme minority and often have to use double talk to “survive”.
  • General practitioners receive only 1 or 2 hours on autism during their training
  • We are facing a humanitarian problem of organised segregation in the very country which created the first declaration of human and citizen’s rights in 1789 This situation cannot continue !

    What are you going to do?

    Today, our collective Support the Wall and defend the Rights of People with Autism in France has decided to tackle this fight for human rights head on. Our sister organisation “Support the Wall – Autism: Help Stop Abuse of Autistics in France Now !” will pressurize France to outlaw this practice in 2012, when, (ironically), the government has declared autism as its National Cause of the Year.

admin On January - 13 - 2012

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