The Forgotten Children

France…

I love its cuisine, culture, architecture, fashion. French is my first language and I feel very close to this country, because most of my childhood friends and relatives live there.  I’ve frequently been amazed by France’s medical breakthroughs. In 2005, the first face transplant ever done was performed in France, and more recently, in 2011, the first functional artificial red blood cells were invented. That’s why, with all my admiration for this great country, I was shocked when I started to read about Autism in France. As a result, I feel compelled to reach out to French parents who are probably desperately trying to find information on what can be done to help their children.

The sad case of Autism in France

France has been the scene of a recent scandal involving censorship of the documentary “le Mur” (The Wall), by Sophie Robert, who worked on the project for four years. The documentary explains that the French psychiatric community still maintains the that mothers are the cause of Autism — a theory that has long since been debunked  —  rather than accepting the fact that there are medical reasons for this neurological dysfunction.  The documentary also makes it clear that autistic people in France are being cast aside as useless, unintelligent and unwanted.

When I first began my research, the documentary “le Mur” was accessible on the Net and I had the chance to watch it (it is no longer available due to legal matters). It was shocking to say the least. I kept shaking my head in disbelief. I could not believe that today, with all that we know, Freud is still a reference in the mother-child equation, and that torture techniques are being used to “calm down”  agitated children.

The documentary follows psychoanalysts who believe that an autistic person chooses to be autistic. Apparently, the “choice” to be autistic is a reaction to a negative and/or traumatic family environment. But how can we agree with such a theory when we know today that this is a huge medical error? Autistic children do not choose to be autistic. On the contrary, the child has no choice but to live with his or her handicap, and to try to overcome it everyday. I am outraged that, despite the fact that it has been thirty years since the international scientific community has recognized Autism as a neurological disorder causing disability in social interaction, the French psychiatric community — which remains largely dominated by psychoanalysts — continues to ignore all the discoveries of the recent past.

What bothers me the most about censorship of this film, is that France is not known for its high moral standards, and usually has no taboo on religion, morality, sex and politics. Television programs are constantly pushing the limits of decency, with sex scenes and vulgar language as early as 9:00 at night while children are still awake.  Censorship appears to be non-existent.   French Ministers are renowned for having mistresses; no one seems to be outraged by that.  But, for some reason, a documentary dealing with autism and its barbaric treatment methods merits censorship.   Apparently, France has some powerful lobbyists, too.

It is estimated that over 450,000 children are affected by Autism in France. That’s one in 150 children, a huge rise in recent years. A trend that is unfortunately seen everywhere around the world these days. It is time for this discussion to take place! I am shocked to know that in 2012, there are countries in the world where autistic children are victims of abuse and barbaric treatments. THIS HAS TO STOP!

A new and unfortunate meaning to the word “Packing”

 Until very recently, “Packing”, an old technique used in psychiatry to calm patients who are very agitated, was still practiced in France and used on autistic children. Packing involves wrapping the child’s entire body, either naked or wearing only underwear, in wet, refrigerated sheets or towels, with only the head exposed, so that it is impossible for the child to move. Children are kept in this state for almost an hour. Typically, packing sessions are repeated several times a week and can go on for months, sometimes without parents’ consent. Despite the absence of scientific evidence supporting their claims, therapists argue that packing reinforces talk therapy in an effort to “cure” the child of his or her “affliction.” Wow! What an incredible invention this is!

Mind you, North America can not claim to be much better. The Judge Rotenberg Center has been in the news recently for its controversial use of electric shock to curb autistic symptoms. How could this be happening in this day and age? It’s absolutely barbaric. This place should be shut down immediately. Someone needs to stand up for these children and protect them from the torture these institutions have the audacity to characterize as “treatment”.

Thousands of families have been struggling for months or even years with psychiatrists or psychiatric hospitals, complaining that their children were kept in a state of “psychosis” and not taught to communicate properly. Those who refused to bring their child to psychiatric hospitals were often sued for neglect.

But there are parents who fight every day. “Lea for Sammy” is an organization that is working very hard for the rights of autistic children to education, special programs, treatments and a place in society. In 2009, members gathered from all over France to denounce “packing”.

The good news is …

The only good news in this story is the HAS (High Authority for Health) has finally ruled on this matter by opposing the use of “packing” in France. Instead, it formally recommends early diagnosis, educational and behavioral approaches, which are what parents have been demanding for years. Although they have not won this war yet, the parents of these children can finally say that they won a battle and got some well-deserved attention.

Let’s talk about hope

Now, I would like to take this opportunity to talk about the only option that is still completely unavailable in France: the biomedical or “microbial option” as some call it. Through all my research, I was unable to find French resources that could guide me to it. Yet, it is growing in popularity in North America.

Why consider this option?  Just because more and more children are getting better as a result of these treatments. When our children go on a specific diet and are given other treatments (medical, biomedical or homeopathic depending on their symptoms and history), they actually start to get better and may find social and communicational autonomy once deemed impossible. Some even lose their symptoms and live a “normal” life, pursuing their education in a typical curriculum. I can’t imagine all those French parents with no access to these treatments stripped of hope, watching their children grow. I know that they don’t even suspect all the opportunities available to them! I want to tell them that they have not been given the right information! There is so much that can be done to help our children! I want to tell them that they can hope for a better future for them.

The Thinking Moms’ Revolution: our group

This is the purpose of our group, “The Thinking Moms Revolution”, Spread awareness yes, but start a thinking process among parents and give hope! I know that if I did not speak English, the biomedical world would never have been accessible to me. All the documentation is in English and the only reports I have read in French on the microbial and biomedical treatments are extremely negative e.g. EgaliTED – Autisme considers this approach as  “quackery” and dangerous for the health of these children.

Of course, as for any treatment, a parent must do research themselves to ensure the safety of their children. It is also very important to have a good doctor who knows the protocol. My son’s pediatrician, who had initially refused any collaboration with other U.S. doctors, would never have  changed his mind if he hadn’t witnessed my son’s progress during our routine visits. Moreover, most of my friends here at The Thinking Moms’ Revolution have lived the same thing. Don’t think that this approach is openly accepted by the medical profession in the United States either! It isn’t yet. But thankfully, the results speak for themselves, and some doctors are finally becoming more open to the “biomedical world”.

How can it be a “coincidence” that so many of these children have food allergies, weakened immune systems, compromised sleep and disrupted digestive systems?  How can parents not want to know more and dream of a better future for their children? Today, thanks to technology, almost every  piece of information and research is accessible on the Web. You can read, learn, and find support groups where open debate is possible.

Conferences are organized every year where the best practitioners in a wide variety of fields are invited to present the latest treatments in the field of Autism. Parents can go there to learn more, but also to find support, hope and the feeling of not being alone in this battle. This will be the first year that I will participate and I hope to see you there!

 AutismOne/ Generation Rescue Conference 2012

It is only through our strength and determination that we will be able to change things. Without our voices, our children have little or no hope. Please, do not allow them to remain the forgotten children.

For more information (in English) on Autism in France: Support The Wall

~ Prima

Pour lire la version en Français de cet article, veuillez cliquer sur ce lien. (Please click here to read the original blog in French)