This document, is a faithful transcription, translated into English of most of the questions and answers on the very famous France live talk show “The Phone Rings” (“Telephone Sonne”) on French National Public Radio France Inter on January 4th 2012.
Our sister organization “Collectif Soutenons Le Mur” launched an action the day before to call the station and to help increase the awareness on the difficulties of Autism in France.
Important Contextual Notes – David Heurtevent
In France, the terms High-Functioning Autism and Asperger Syndrome often have different meaning compared to international classification, because of the lack of training of doctors and because France refuses to use the DSM IV and CIM 10 classifications. As a result, many diagnoses are unreliable. For instance, I have met almost mute “Asperger” in France!
You will notice in this transcription that prevalence in France is currently assessed by professionals as 1/1500 not 1/160!
An English reader must understand that only 20% of children with autism are somewhat schooled in France, some only couple hours a week.
Another important feature is that the term “therapies” includes psychoanalysis, psychodynamic and psycho-sensory approaches of autism and excludes educative or teaching methods.
So keep these important differences in mind !
This show reveals the extreme precariousness of families and individuals with autism.
Most families don’t have access to rapid diagnosis, diagnosis don’t follow international standards (CIM, DSM IV), or standards of care and educative methods (ABA, TEACCH, PECS) available abroad.
Due to the lack of vacancy in centers, many are forced to exile their children or their family, particularly to Belgium.
French psychiatry is resistant to change and refuse progresses made elsewhere years ago. They are focused on their ineffective psychoanalytic practices.
Whatever the functioning levels of the child, the resources allocated by the government and the local authorities (as part of our social health system) are largely inadequate and may decrease again due to the economic crisis.
Marcel Hérault, president of “Sesame Autisme”, takes a clear stand against the psychoanalytic methods and in favor o educative methods. He considers scandalous that seats in institutions, funded for autism, are not assigned to them, and worse, that professionals are trying to direct children or young persons with behavioral problems toward the exit.
Professor Catherine Barthélémy defends an integrative approach consisting in a “range of educational and therapeutic proposals.” She does not believe that “any single method could solve the problem alone. [...] And, probably, it’s still the error of the psychoanalytic approach to believe that it can solve the problem alone.”
Unfortunately, she also said shameful words on the distribution of seats in institutions. She states that it is necessary to “allow institutions that currently host children to be free from “old children” [she means adults] still in institutions because there are no availabilities for adults with autism.”
Thus, we can be legitimately worried as we know her important contribution to the publication of the recommendations of the French Higher Health Authority (“Haute Autorité de la Santé”).
Transcription of the broadcast
Journalists Alain Bedouet and Danièle Messager invited:
- Marcel Hérault, President of “Sésame Autisme”, a large non-profit organization managing autism institutions,
- Dr Jacques Constant, child psychiatrist,
- Pr Catherine Barthélémy, child psychiatrist at the University Hospital of Tours,
- Anne Gatecel, Director of the school of psychomotor at the Public Pitié Salpêtrière Hospital in Paris, [also a psychoanalytically oriented clinical psychologist],
You can listen to the entire podcast in French and check the source on the station website: http://www.franceinter.fr/player/reecouter?play=253663
Introduction by Alain Bédouet (journalist)
Autism is a “neurological disease sometimes associated with some developmental, communication and behavioral disorders, very often [...] detected very late or too late, in France, in children, which causes [...] harmful delays in care quality, itself, clearly insufficient. [...] The diagnosis has been said to be sometimes difficult. And of course, treatments, especially as many of you – I said it already – emphasize the fact that the places available in institutions are far from sufficient to the point, that’s what you are writing, that many helpless families sometimes have to go to neighboring countries, such as Belgium.”
Consequences of the Great National Cause Label [allowed by the French prime minister, this label allows some organizations to get free advertising in the media]
Marcel Hérault said: “I expect public authorities not just to give us this label, but eventually to quicly start a new autism plan, and especially [...] to meet the needs that are not met today. But I hope the government goes the extra mile, meaning that we give more resources to diagnosis and also to support the persons with autism lacking self-care skills. [...] Many families are without a solution. For me, the goal is not to obtain the label, but rather to use this label to talk about autism and to try to improve patients’ care quality.”
Diagnostic delay: sometimes more than six years later!
Mathilde explained that her 6 years old daughter, with high-functioning autism, just received her diagnosis, even though she has alerted professionals since her daughter was 9 months old:
“We have not been listened to, we were never heard. We were told not necessarily very pleasant stuffs. I was somewhat guilt-ridden by professionals. Behold, a child psychiatrist in private practice – I must say – took the liberty to ask my husband if he was still in love with me, as that would probably explain the silence of our son! I am laughing now, but then it was not pleasant to hear! [...] Must we all relocate abroad to get proper care?”
Christiane: “But why many French doctors still refuse to name autism, is the label that scary ?”
Jessica: “My son is 9 years old and has only recently been diagnosed with Asperger Syndrome [...] It is astonishing when you consider the fact that he has been followed by doctors since he was a two year-old.”
Mathilde: “As a mother of a 6 1/2 years old, with high functioning autism , I do not understand why I had to wait six years to get a diagnosis when it was so easy to tell.”
Dr. Jacques Constant is embarrassed: “It’s not easy to do a diagnosis. We are not yet used to diagnosis of Asperger Syndrome, so diagnosis of autism, in the medical field, especially as children with good intelligence can lead sometimes the diagnosis to wander.”
Dr. Jacques Constant assessed that there are more and more trained practitioners, so that we should aim at reducing the diagnostic time. Yet, “it’s not that easy, as we have extended the concept of autism to different criteria. We need a culture that appropriates these changes and we do a lot of effort for this [...] but it is still uneven from place to place in France and it remains difficult.”
For the Pr. Catherine Barthélémy, it is necessary that doctors listen well and hear parents’ difficulties or the behavioral peculiarities they describe. She said: “The delay in diagnosis is longer for lighter forms of autism, with a well-preserved intelligence, and these children can have a school career seen as somewhat “ordinary”. [...] Then, I think we already did a lot of progress, including in France, and this is true in giving the diagnosis as soon as possible. However, it is hard to say “this child has autism” before he/she is three year-old. We are talking about warning signs. As soon as they are identified, the child will need to be see specialists for additional diagnostic checks”.
Journalist Danièle Messenger raises the question of practitioners’ training and questions the answers of Catherine Barthélémy: “You say we made much progress, but we were very far behind”. She evokes a study published last year showing that the French Practitioners assessed the prevalence of autism to 1/1.500, whereas in reality it is 1/160. Thus, she concludes that there is a lot of work to improve doctors’ knowledge.
But “when we hear stories of people whose child was diagnosed with autism as 7, 8 or 9 year-old, we estimate that many years of discovery process is a bit long.”
Strong resistance to change
Caroline: “I really wanted to point out that autism is recognized by the CIM, thus by the international community as a neurological disorder. Yet, in France the majority of psychiatrists persist in recognizing autism as a [...] child psychosis. [...] I went through this like many parents. I had to remove my child from CMP, CMPP, hospitals (there are three types of public health institutions) where my child was clearly labeled with psychosis or disharmony.”
Marcel Hérault: “In these accounts, there is the suspicion that many families are facing: They are accused of being the cause of autism, that they are guilty, to be clear. It’s unbearable, I mean, things have not changed, as much as we might be desired, in the last 20 years. [...] I think there’s a problem of culture in the French psychiatry [...] Compared to other medical specialties in which people adapt to new knowledge, there is a very strong resistance and, as you said for instance, to update the numbers you provided on prevalence rates, so there is a form of denial in part of the profession, that is regrettable. Obviously, this is not the entire profession of psychiatrists, but there are still a very large number of psychiatrists [...] who do not give them good advice. [...] And do not forget that we need a very substantial policy to multiply the number of diagnostic centers.”
Dr Jacques Constant: “It is true that many psychiatrists remain attached to old views, including classifications [...] The situation is not perfect but relatively positive changes, in my opinion, have been made.”
Anne Gatecel: “The more there will be psychologists, therapists where young children are, the more they will have a rapid access to outpatient autism referral centers.”
The exile of autistic people to Belgium
Stéphanie: “I would like to understand why French families must exile their autistic children to Belgium due to the lack of facilities in France.”
She talks about the case of her 11 year-old son William who is exiled in Belgium rides the bus back home every 2 weeks to reunite with families with 25 other children from the Paris region.
Journalist Alain Bédouet: “And I have 50 messages like this [...] But , damn, why this delay… I can say it’s shocking!”
Marcel Hérault: “Indeed, I am denouncing this fact every single day. France does not create enough facilities to accommodate persons with autism. The situation may be dramatic for children; it is far more terrible for adults. And I fear this will worsen in the coming years if we do not react, if the governments do not respond by creating a plan that creates massively facilities for autism. There will be more and more families forced to practice this exile to Belgium [...] which is unbearable.”
Journalist Danièle Messager said that Minister Simone Veil started tackling this issue in 1995, and now we are in 2012. Yet, the fact that families are forced still to send their children in Belgium is a big problem.
It is necessary that the government support persons with Asperger Syndrome
Stéphane: “I am the father of a boy who was diagnosed with Asperger Syndrome at the age of 10, after 6 years of follow-up in a CMP (a French outpatient referral center). He was diagnosed almost by accident, because we found out that the CMP had no results. My question is: Don’t you believe that the governments should tackle the issue to prevent families to be crushed between the CMP, which are practicing psychoanalysis and are completely ineffective, and on the other hand, families of autistic children, which are self-trained, sometimes very badly, and moving into the wrong directions ?”
Dr Jacques Constant: “This account is a reality, but the government has already taken the issue head on, since there have been many recommendations. I find it interesting that many questions are about Asperger Syndrome as it is something relatively new, including in the international community. The work of Asperger (of 1943) was rediscovered in 1981. So these are new forms that are currently not well handled and that will definitely benefit from the actions decided at government level.”
Pr Catherine Barthélémy: “It’s true that there is a need for more professional training [...] And to allow institutions that currently host of children allow institutions that currently host children to be free from “old children” [she means adults] still in institutions because there are no availabilities for adults with autism. We need more institutions for adults with autism. There is a desperate need for trained teams.”
Deficiency in mainstream schooling inclusion
Christine, a 8th grade teacher (13-14yo), who has a teen with autism in one of her classes, said: “The child is supported by a T.A. (eq. “AVS”) 12 hours a week, but I ask myself, first I have not been trained to handle this child, and 12 hours per week only is just over one third of the child’s school time. Thu, he would need – in my opinion – this T.A. much longer in the week so she can help him better. She only attends one of two courses I am teaching to this child, so it is a bit of tinkering. Plus, she can’t support him for more than two years, as, from what she told me, the institution doesn’t want bounding to exist between the T.A. and the child. Thus, next year he will be entrusted to another T.A.”
Therapies, future of children and the controversy between psychoanalysis and behavioral methods
Anne Gatecel: “These methods [ABA, TEACCH, PECS] are educative methods so I will not talk to you about it. I want to speak about therapeutic methods, the “mediation” that is used, and we already talked about the families who feel guilty because of some psychiatrists. I think it is somewhat behind us. I am sorry, but I still think there is professional training, and that I am training professionals. We no longer are using pure psychoanalytic or pure neuro-developmental theories. It’s much more complicated than that. It is much more plural than that. I think we can accommodate everyone. On the other hand, and it is true that we must try to find the most suitable therapeutic method for each family and each child. ABA or TEACCH methods do not exclude the use of more psycho-physical methods. We can also try a psychoanalytic sensori-motor approach like A. Bullinger’s [supporter of the French method, called Packing, of embalming autism children in a cold wet cloth] [...] to improve their sensory stream. We will try to improve the integration of sensory stream by building a special room, so that the child can make sensory experiences that prevent hypertension and situation that make him unable to listen to others, and willing to stop communicating.”
Dr Jacques Constant: “I believe that instead of talking about the eternal debate between psychoanalysis and behaviorism, we discuss the fact that there are autistic children who are well supported and others who are not. There is needed to multiply support based on good practices. First, this is about structure, which is the fundamental principle of the TEACCH method, the structure of the child space so that he/she can be reassured by a very good structure of therapeutic space. Then comes stimulation provided by the ABA method. Thus, more direct stimulations, although it must be dosed for each child – of course. And, most importantly, compensation, support of their “emergence”, what they can do, and compensation of their disabilities. And, for the compensation of deficiencies, particularly communication deficiencies, we now have image-based tools, often based on visual aids, because it is the way of thinking of autistic children, their way of being, that mandates this method, so there are visual aids. Thus, sometimes they take the form of the famous PECS method, a method derived from ABA, but which is very well designed to allow gradually the child to understand image exchanges. But all sorts of other approaches are…as long as children are cared for and well enough and as long as it is not once a week from time to time. It is rather what we have to blame, rather than a reference of psychoanalytic or behavioral psychotherapy.”
Journalist Alain Bédouet: “So here we will not aggravate or resume the debate, but I must say simply because I read the calls, listen to them , I must say that parents don’t feel that way [...] Your speech is quite good, you are in ecumenical rhetoric, but I have parents who tell me they are caught between – I have one who speaks to me of – a sect of psychoanalysts and a sect of non-profit organizations. Anyway we’re not going again to inflame the debate, but obviously the isolation of some families, the lack of resources that we have denounced makes people flustered at times, plus, we will maybe talk about it later, it is expensive.”
Marcel Hérault: “For me, there are two basic principles if we want to do a proper job. First, know the characteristics of autism. The way of thinking of an autistic is not our way of thinking. [...] Second, [...] the only things that can work with autistic children are in the educative realm. So I am not for one method against another. But teaching methods, educative methods, which help “autistics” make progresses. This does not exclude a little bit of therapies occasionally, but that’s mostly it. And somehow, what I am saying, too bad, I am taking the risk, is that psychoanalysis today cannot contribute to the issue of autism. I would have welcomed more explicit recommendations about this point. This does not mean a condemnation of psychoanalysis. There is a need for psychological support in autism. Yet, the psychoanalytical tool is not suitable to the problem of autism. I am clear about this.”
Dr Jacques Constant: “That’s right but psychoanalysis is tailored to help carers understand the mechanisms of autism. It is very difficult. Indeed.”
Pr Catherine Barthélémy: “Depending on each child, there is a range of educative methods and therapies that can be used, and this range relies on a precise evaluation of, not only the child’s abilities, which are sometimes overlooked, but also his/her specific needs. It is very clear. And this range evolves over time [...] The issue of diversity: I don’t believe that any single method could solve the problem alone. [...] And, probably, it’s still the error of the psychoanalytic approach to believe that itcan solve the problem alone.”
Distinction between schizophrenia and autism in teens
Joël talks about his son, hosted at times in an autism center, and interned at the Public Psychiatric Hospital “Robert Debré” in Paris, a priori diagnosed with schizophrenia.
Professeur Catherine Barthélémy: “Autism is defined based on criteria. By definition, it excludes schizophrenia, which is a form, let’s say, of psychosis in adolescents and adults, in which there is a production of de-realization and hallucinations. Normally, in autism, there are no such signs. That being said, it happens that some persons with autism go through psychotic episodes, it is called co-morbidity.”
Discrimination against adults inside and outside institutions
Anne, mother of an 18 yo autistic child with profound intellectual disabilities, explained the difficulty to find support during her daughter’s childhood, and also “the rejection by a number of institutions, fortunately not all [... ], because of behavioral problems, such as occasional aggressiveness [...]. Many institutions have told us, oh no “we cannot take her in” “too difficult”, “too much of a burden”, “impossible”. Yet, these institutions had an approval for autism care. […] She has been hosted several years in a Belgian institution, paid by the Belgium government, not an offshore facility. Today, as she is an adult, we are looking for a new facility, because she will not be able to stay there forever. Yet, I hear the same story once again, first in my department, where no vacancy, all facilities are full and the vacancies that have been created in recent years are taken by people who are relatively young, creating a shortage. And also, where there would still be a place, they say, “Here it is impossible.” Even this institution hosting persons with autism cannot take her in because they cannot afford to care for a “case like my daughter”.”
Journalist Alain Bedouet insists he have a lot of calls about cases of young adults with autism.
Marcel Hérault: “Organizations creating and managing institutions are facing patients with behavioral problems every day. It is outrageous that institutions created for autism treatment do not accept persons with autism. Obviously I do single out individual cases, but generally speaking there are folks that are trying to direct children or young persons with behavioral problems toward the exit. This is unacceptable to me. It is essential that the government realizes that persons with behavioral problems need stronger support, because we need more funding. And I often observe large discrepancies in government funding between institutions: up to twofold. I believe there is a need reorganize the sector, if we want to allocate enough money to institutions so that they do their job properly. But what the lady said is true, I am facing it every day.”
“There are an insufficient number of places for adults with autism. It is a tragedy. [...] Most adults mostly are in two types of medical institutions. And today, the medical institutions hosting the largest number of persons with autism are financed [...] in large part by local authorities [French “department assemblies”], which are facing financial turmoil today. We can be really worried regarding the future of adults. Thus, those who already have a place will likely keep it, but the vast majority who does not have one will may be send back home, and a few in Belgium – I would say it is better for them, but it is a awful thing to say ! It is great for those who found a solution. So, many will stay home, few in psychiatric wards, contrary to what is said, because psychiatric hospitals do not want them either. It’s not such a bad thing they do not want them… but anyway, there is a real drama for adults with autism and it requires that the government gives us a response regarding the financial problems now faced by local authorities … ”
[A topic about oxytocin, not repeated here]
Journalist Alain Bédouet concludes “In three words: lack of resources.”
Translation thanks to Louis, student in Psychology and revised by David Heurtevent