Monday, November 19, 2012

Shameful - A Film about Autism in France


Alex Plank and NoahTrevino are wrapping up editing on a documentary film entitled "Shameful", which reveals the negative treatment and educational neglect of autistic youth in France, and the dramatic effect it has on those families. They traveled throughout France for over a month interviewing parents and meeting young autistic children in their homes, capturing the frustration, and angst of caretakers as they try to navigate a system that both blames the presence of autism on parents, and neglects to provide any educational structure for the children. I spoke with them several weeks ago.

What led you to the Project?

We heard about the issues in France through a conversation and thought that the topic would be a good fit for documentary. We had heard about “packing” [a controversial treatment where children are wrapped in wet sheets for hours at a time, which is often repeated over the course of years.] which came out of Bruno Bettelheim’s theory of “refrigerator mothers.” And we had heard that the main “treatment” for autism in France was psychoanalysis.

How is psychoanalysis being used in treatment?

"Treatment" is not the right term, because it makes it sound like it is something legitimate. These people don't seem to see a difference between autism and psychosis; they believe that Autism is a psychosis. You don’t have to have any license or degree, you just need to get into a group [of thought, e.g. Freud, Lacan] with other psychoanalysts and you can have an operating practice and say you are a psychoanalyst. It is completely unregulated. 

They are telling mothers and fathers that it is their fault, and parents are clearly not happy. These psychoanalysts have many competing theories which include absurd things, like the positions, about the way the parents had sex (during conception). And almost anything they say will contradict the next thing they say. [the version of psychoanalysis that is most prevalent in France is the post-Freudian school associated with Jacques Lacan. The underlying notions are that autism and other mental health problems are caused by a disturbance in the child's relationship with their mothers, or by “maternal madness.” These theories have been rejected the world over in the last twenty years.]

Who is the main focus of your film?

We mostly met with autistic children and their parents. The youngest child was probably six. There were a few teenagers, then all ages in between. More than half of the trip we spent staying with these families. So we got to live with them for the night, and not just stay for an interview.

That was where we kept hearing them say they were ashamed of their country because of how autistics are treated. That notion of shame coming from people who have such a national pride was really big. The fact of the matter is that there are people there in France now that are not proud of their country at all. And the fact that they were willing to let foreign people stay in their home shows how much they feel, and that they want to talk about this.

Tell me more about what goes on? If I am a parent, and I notice that my child is having some struggles in school, or has a language, a sensory processing issue?

The school or the pediatrician won’t even give the right diagnosis; they wouldn’t say ‘autism’. The children are seen as having a psychosis, and the parents must pull them out of school. It is ingrained that way in their education system. Then the children are sent to psychiatric hospitals called Hôpital du Jour, where there is no educational component at all-- not a good place. There is nothing attractive about a hospital in which children are being tortured. They are sent to these asylums and the parents are told that everything is their fault, and the whole family goes to therapy twice a week forever. 

[Children identified before the age of six, unless parents have private access to other professionals, go to a centralized medical center CAMSP (Centre d'Action Médico-Social Précoce), and are given perhaps one short session a week with a generalist who has no specific autism information. Speech therapy is not offered to non-verbal children. After the age of six, but sometimes sooner, children are placed at these Hôpitals du Jour. For children with more significant intellectual disability there are full time asylum placements. Information (in French) here.]

Do children with other disabilities go to school? Kids with cerebral palsy, for example?

I don’t think so-- by law they are supposed to, but the laws aren’t enforced. School officials make up reasons why the children can’t be there, like safety reasons. Autism France did a survey that said that 80% of autistic children do not attend school.

Did you speak with any autistic adults who have suffered through this life?

We didn’t see any autistic adults because they are probably institutionalized. They are probably in these hospitals. And there is no way to get into these government-run facilities. In general there's no educational placement for these adults either, and if their parents or family aren’t around, there is really no other place for them to go.

Was there a difference between urban and rural settings? Was there a difference between families that had money and those that did not?

We saw no difference between urban and suburban, and we were all over France. Actually a lot of these centers are in the more suburban areas, cities that border Paris. Parents would say things like, “In a place like Paris, you would think that there would be more ways, more places to get services.” But there really isn’t. There are only a small number schools that any of these children could go to, and they are all full, and the waiting lists are very long.

The parents are sending their kids to Belgium if they have any sense of what should be done to give their kids opportunities. There were 5000 kids who went to Belgium according to one news article [video (in French) here]. The families that are sending their children don’t necessarily have more money, but they do speak English so they have better information.
The French government will pay for the school in Belgium, and they pay for individual taxis to take the children there. Because of this, many families have moved to the north of France to be closer. It has become an industry of sorts in Belgium.

And at least in Belgium there is an educational setting during the day, unlike the psychiatric hospitals in France, but if they stay at school, they don’t sleep on the campus. They are still sent to those types of hospitals at night. And there are all of the rumors of doctors giving medication, or changing medications or dosages with out first speaking with parents and getting consent.

It seems like there is sort of a financial or political machine behind all of this.

Yes, there is definitely a financial component to it, but the biggest part of it is the culture, and I don’t think this is a European culture issue, it is a French culture issue. Even when the Minister of Health put out a statement saying that they did not recommend packing as a form of intervention, the psychoanalysts went on record saying that recommendations do not need to be followed.

And it is fashionable to go to a psychoanalyst; politicians go, people in news go. The government is paying the bill for the families to go to the psychoanalyst, but the child is only really being observed, and the parents are being blamed, and no one is getting any help.

Parents are worried. They just want to make a better environment for their children to grow in, they are just trying to get basic support for their children. And we heard the story over and over again of families where the father can only work part time, and the mother can only work part time, or not at all, so they can care for their child. There are stories too of social services taking the child away, we heard that, and without giving too much of the movie away, one woman talked about children being taken away.

Is your movie a documentary, an expose? A narrative?

All of those things, of course, but mainly a documentary. We didn’t take a point of view, but the families we interviewed, they have a point of view. The title Shameful, we just kept hearing people use the word “ashamed” and “shameful.” We just want to get the discussion started, educate people, and start the dialogue.

There was another documentary out last year, le Mur by Sophie Robert that followed two autistic children. Were you inspired by that movie?

Not really, it was actually coincidental timing. Just as we were discussing the idea, the court case happened. [Three of the psychoanalysts whom Ms. Robert interviewed for the film sued her, claiming she misrepresented them.] It actually worked out because more people were becoming active, and it brought more parents together to protest.

Did you wish there was something you could do in the moment?

We were moving pretty quickly, and I don’t think there was time for it to set in. It was all coming at us so fast. I think it all takes a bit of processing to go through.

And now as we are editing we are there all over again. When we were there people were giving us rough translation of the main stories, but we didn't have transcripts of exactly what they were saying for months, so we really didn’t even have the whole picture. The translation as we were going was really just an approximation by the person who was helping us. When they say something is “lost in translation”, it’s really even more true with such sensitive issues. Now we are hearing even more.

Where are you in the process now? When can we expect to see the film?

We’ll be entering the film in festivals. Then we’re hoping it gets some interest and will be shown in theatres worldwide. We just hope to educate people enough to start a discussion. We just want to show what these autistic children and their families have gone through.

Do you feel like you are changed people from having witnessed the lives of these families?

Noah: I was raised by a single mother, so I have that whole experience growing up, and seeing how hard she worked, and how hard it was to make ends meet, and her that way I do relate to their stories.

Alex: Yes. It definitely changed me. Going into it you have these ideas, you think "Oh it's a sad thing," but really witnessing it first hand, talking to these families I don't even think I can really describe the effect it had on me. I had no idea that children could be treated that way, that they could just be taken away from their families like that.

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