Shameful
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 struggles…in 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.
For more information please visit http://www.shamefuldocumentary.com/