Monday, 23 January 2012

Psychoanalytic treatment for autism: Interviews with French analysts

Last week a French documentary called “Le Mur” attracted attention in the New York Times. Plans to screen the film later this week in Philadelphia are being contested by three of the interviewees. They are all psychoanalysts who treat children with autism, and they complain that the film has been unfairly edited to make them look ridiculous. They are suing the film-maker, Sophie Robert in her native France. All the signs, though, suggest that their legal action is causing a Streisand effect, drawing attention to them and generating considerably more criticism of their activities than would otherwise have been the case. A website called “Support the Wall” has links to the documentary, with English subtitles, and to other sites highly critical of France’s idiosyncratic approach to autism intervention.
At nearly an hour long, the film is quite demanding to sit through, so I thought it might be helpful to post a transcript of the interviews with psychoanalysts, so people can judge for themselves whether the analysts have been ridiculed.
This text should, however, be read bearing the following points in mind:
  • The translation was not done by a native English speaker, and I simply copied the text from the subtitles, rather than attempting to improve on the translation. It is important to realise that some apparently incoherent utterances could be due to poor translation.
  • The subtitling is very amateurish and uses multiple colours in a way that can make it difficult to read at times. Unintelligible material is denoted as (xxx)
  • The speakers are indicated in brackets, with (I) denoting the interviewer (presumably Sophie Robert). All other speakers are psychoanalysts.
  • My ability to keep track of all the analysts is imperfect, and so I may sometimes have misattributed a statement - please refer to the original movie if you want to be certain of who said what.
(Update, 26th Jan 2012: World Service Health Check podcast on this topic)
The Wall
Introduction
For more than thirty years, the international scientific community has acknowledged that autism is a neurologic disorder that is the cause of a handicap in social interaction. All autists have the same anomaly in one area of the brain, the upper temporal line1 identified in 2000 by Dr Monica Zilbovicius. In France, psychiatry, being very largely dominated by psychoanalysis, ignores these discoveries. To psychoanalysis, autism is a psychosis. In other words, a major psychic disorder resulting from a bad maternal relationship.
1 Comment by DVB: I assume this refers to the superior temporal sulcus. I regard the statement about anomalies in all autists as an over-simplification
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The Interviews
(Dr Alexandre Stevens) I think that autism is a mode of reaction of the subject that is obviously very early in his logical history.
It is that (xxx) response to what comes as invasion of the world and of the other.
He clams up.
He clams up, he gets into a bubble and refuses to enter the mechanisms of speech.
But (xxx) some autists speak, don't they
So it is more than speech, in the subjective mechanisms
I mean, speaking, yes, but without being really involved.
(interviewer) Do you make a structural distinction between psychosis and autism?
(AS) No, I don't.
(I) Are autists psychotic?
(AS) Yes. That is to say, autism is an extreme situation of something that is in the scope of the set of psychoses.
*****
(Professeur Pierre Delion) The structural distinction that one can make between autism on the one hand and child psychosis on the other hand
that is (xxx) the aspect of the description of the underlying structure does not stand up to analysis in the continuity of this first structure and the second one.
It seems to me that there are paths between the autistic structure, the psychotic structure, and the dysharmonic structure.
Now, when we say that, we upset many associations of parents of autistic children who think that autists have nothing to do with psychotics
To me, this is a mistake; there are many things in common.
*****
(Dr Genevieve Loison) It is the crocodile! (gets out toy crocodile)
So the crocodile tells us right away what it is all about.
They play with it and when they put the hand or an object in, I am worried.
(demonstrates with hand in mouth of croc)
When they get on top of it and hit it, I feel reassured. They are fighting!
(I) Why? What does it mean, the crocodile?
(GL) The crocodile is the mother's belly, the mother's teeth
(I) Is that what Lacan used to call the mother: a crocodile?
(GL)Yes, so the goal of our work is to forbid her to eat.
(I) To eat the child?
(GL) We put a stick in him
When the child starts getting out this, sometimes he puts his hand
(demo hand in croc mouth). Sometimes he puts a figurine in.
(I) And this pen, what does it stand for?
(GL) (Puts pen across croc jaws) So this means "You can't any more" It is the bar.
(I) Is it the father's phallus?
(GL) That's it. You can't do that any more.
(I) It is the father's law, that bars the child from his mother and that forbids the mother to destroy the child.
(GL) Right, and to devour him.
(I) Does this also relate to autistic children?
(GL) Of course, yes. For autists it is a matter of stage, you see.
We take the children at some stage.
The autistic children, they often put the child in there (has what looks like a tortoise in shape of a bag?)
They go in there. Then, we get worried, right?
(Interlude with family with autistic children)
(05:15)(I) Regarding both psychosis and autism, there is an explanation that is traditionally used is that a maternal depression during pregnancy or the first months of the baby’s life would have altered the mother-child relationship, and could be responsible for severe disorders.
(Prof Daniel Widlocher) So, this is what serious colleagues tell us, so consequently I listen to them.
*****
(AS) It can be the case, when the child comes in such conditions where the other, his first “other”, the mother is very depressed. I mean she will be absent from him, will be in another look at him, that it could sometimes make it so that the child chooses to withdraw.
Sometimes, when the mother is depressed, when she is pregnant or at birth, sometimes the child can be autistic.
*****
(GL)Woah, well, we have seen a few of them. I remember, it was when I was in a psychiatric clinic that I have seen them, mostly.
I have seen massive things, massive voids, disorders.
I have seen abandoned mothers! For each autist there was, I would say, a different cause.
I have seen many mothers abandoned at the end of their pregnancy.
And the child… depressive mothers too, mothers in the baby blues afterwards, abandoned at the end of pregnancy, who have a baby blues after delivery, who are themselves in the emptiness and who put the child in the relational emptiness.
*****
(DW) For example, deep deficiency
For instance, a mother who, for reasons of depression does not take any care of her child, stays mute in front of him, clotted, while the child is there, starting to hang on to her, looking for contact.
It can, if it lasts long during childhood have consequences on the young adult who will keep being very cold, inhibited from an affective perspective, because, when he was a child, he unfortunately had a very cold mother.
*****
(I) Is there a higher incidence of the cases of psychosis or autism in countries where there is a war?
In the favelas of Rio? In all circumstances where mothers have good reasons to be depressed?
(GL) I am not aware of that, I cannot answer.
I can only answer about what happens in my practice, you see.
(07:55) (interlude)
(08:41)(I) How can one explain that a maternal depression could cause a child to be autistic?
To start with in utero?
(09.04)(AS) So, first of all, in utero some things already happen
I am not a specialist of in utero, but there are things happening.
The child moves, mothers speak
Mothers talk to him and react to a number of stimuli
In fact, what do children know about this link to the other, in utero?
It does not completely go through language.
But it goes through the whole environment of corporal sounds
Finally, a depressed mother, when the child is there in utero, does the child feel anything?
I am totally unable to tell you, but I do not feel like it is odd to think so.
*****
(Dr Aldo Naouri) Most of the time, the symptom of the child is no more no less than the symptom that allotted to have by the maternal unconscious mainly
Because children are in a relationship that is very very permeable in the communication with their mother
Gestation literally conditions a child and forms him.
And really gives him something entirely produced by the body, that comes from his mother's body.
This weakens the field.
It puts the child in a state where his resistance is altered by the conditions that come from his environment
*****
(10:22)(Prof Bernard Golse) For the baby, there is one half of his genes, of his chromosomes are from his mother the other half from his father
So, there is one part that is like the mother, this one does not pose any problem
but there is one part that is like the father and that immediately poses a problem
As soon as the baby is conceived, the motherly organism will immediately secrete a very strong wave of antibodies to expel the baby that is half stranger to the mother's body
It is a little sad to say, if I can say, the first thing that biologically, the mother cannot stand in her baby is the part that comes from the father
So what is anthropological in there is the double "no"
No, I do not recognise this baby; I want to eject him, and at once a no to the no.
Which we will find later in the language
There is a whole interesting question
and in language one will find such double negations.
This comes at the biology level.
(further interlude with family)
(I) Why don't severe autistics speak?
(Prof Daniel Widlocher) I don't know
My first idea is that they do not speak because they are not stimulated for speech.
Like children that are very little surrounded by a stream of language often have language difficulties even though they do not have autism
Consequently there is language stimulation, a parental stimulation of the environment that is very important
*****
(AS) We are not neurologically wired for language
Psychoanalysis does not belong here, if you want
We are not wired for language.
Of course it takes the capacity to speak but the essential thing is that precisely language is outside of the organism
*****
(GL) Why would they communicate, they are in fusion!
They communicate without words, there is no need to acquire speech
Speech implies access to the symbolic, access to the father.
I am not only with my mother
There exists a father who created me in the origin, who was the founder, with his paternal might, who has created a child.
Only progressively with the child discover this.
(I) In what does the father embody the symbolic?
(GL) Ha, this is difficult
He is access to abstraction, access to the distance
Access one has to speak when one is no longer glued
He comes to interpose between the mother and the child
*****
(Prof Bernard Golse) Speaking with the other means that one is no longer merged with the other.
As long as one is no longer separate, as long as one is combined in the other
which is the problem for autistic children, precisely for whom the other does not exist
but when the other starts emerging they are still in such a pathologic distance that they can't speak with the other
*****
(I) About autistic children it is said that their mother cannot catch their eye?
(GL)Yes, they are not at all in the relationship
they are staying in an egg
(I) They flee the mother because they are merged with the mother?
(GL) They have not taken off at all.
They have stayed in the egg, in the uterus
Why do you want them to look or speak?
*****
(14:22)(BG) You can not think of the other one, you can not speak with the other one unless you have some free range.
As long as you are still included, interpenetrated, merged with the other one, you can neither think to the other one, nor speak with him
this is almost a truism
If language touches us so much all our life long, and psychoanalysis goes through language it is that language is only about separation.
That is a vision.... very very well.... it is a vision of development that is extremely specific to the psychoanalytic vision of things
(interlude with family)
(I) The Psyche does not evolve independently of the brain. It does not wander alone in the void.
If we have one side a normal child with a well-functioning brain and on the other side an autistic child with a malfunctioning brain, doesn't it make a fundamental difference in its capacity to communicate with the outer world?
(Esthela Solano) This way of conceiving the causality of autism is very reductive.
What we can notice when we take care of autistic children is precisely that autistic children are sick of language
That autism is a way to defend themselves from language
 
 (interlude with family)
(voiceover) The Austrian-American psychoanalyst Bruno Bettelheim was the precursor of the psychoanalytic treatment of autism.
Bettelheim compared autistic children with concentration camp prisoners that were swinging back and forth, staggered by terror, waiting for an imminent death.
Reasoning by analogy, he was convinced that autistic children were the victims of torturer parents, freezing mothers who had desired the death of their child.
Bettelheim's work has been largely rejected in the USA since more than thirty years.
But how is it in France?
*****
(PD) Bruno Bettelheim is a victim of injustice of contemporary history.
I think that he did his work at a time when no one cared for autistic children, an absolutely exemplary pioneering work.
He got interested in autistic children because he was coming out of an artificial deficiency experience that he had gone through in concentration camps.
He arrived on the autistic planet thinking that finally here are children that maybe suffered from deficiencies in a manner similar to what I have lived myself.
I will try to treat them from this hypothesis, meaning by separating them from their parents.
*****
(GL) There was absolutely no tie.
Mothers who have them so fear them, even during pregnancy
And after, there is absolutely no tie.
And the child is abandoned and can even wonder how he has been conceived.
But the fact is that they were conceived.
He is totally empty, pregnancy is only organic, the child does not exist as a person.
He is totally in the relational emptiness.
And this gives what Bruno Bettelheim, yes, of course
*****
(Yann Bogopolsky) No no, Bruno Bettelheim has said much more than that.
This is the caricature.
I do not say this for you but for those who well
It is not only about mothers, it is also about the father's place in the mother's desire.
And it is about a certain amount of data, not only those with which the child is born, and the link that has been created, or the desires of death that such mother could have had for this new born child.
But all the mothers who have desires of death for their child, all these desires will not necessarily make their child psychotic!

 (interlude)
(voiceover) At the end of the 60s, psychoanalysis is starting to decline everywhere in the world.
But it takes a phenomenal success in France, with the impulsion of an ambitious and charismatic psychiatrist.
For Jacques Lacan, psychotic and autistic children are victims of the alienation by a psychogenic mother.
A woman who refuses to stop her pregnancy because she is unable to split from a child who is a substitute for a penis that she has not received when she was born.
*****
(YB) At the beginning, the child thinks that he is his mother's phallus.
Namely that he is this object that would give everything, fill his mother with joy, make her have orgasm.
*****
(I) Therefore autism is maternal fusion?
(GL) Wait, there are a lot of theories, right?
To me, I have either fusion or total abandon and emptiness.
It's one or the other. The two poles. It's not the same.
But when they are totally in emptiness
but what I deal with here at the practice, is rather fusion
For total abandons, I do not see them, they go to institutions.
(I) Bruno Bettelheim says that autistic children are victims of mothers that are too cold, and on the other side we have Jacques Lacan who theorizes psychosis and autism as maternal fusion, through some sort of a relationship that is almost incestuous between the mother and the child?
(GL)Yes, yes, absolutely
(I) So on the other side, we have a mother who is too warm?
(GL) Yes, too warm or too cold is not good.
It takes a mother, as Winnicott says, good enough.
Neither too good too warm, neither totally empty of course.
If there is nothing, no relationship, it will not give anything good.
(I) How can you explain that two attitudes, two totally opposed behaviours, could yield the same result?
(GL) There are different mechanisms; it is our job to put things back in the middle.
 *****
(voiceover) The English analyst paediatrician Donald Winnicott is the author of the concept of "good enough mother", according to which a mother who wants to do too well is toxic for her child.
He claims that motherhood would take mothers and infants through a transitional madness stage, prototype of forthcoming psychic disorders.
*****
(GL) (approaching with scary toy spider) Unconsciously, this is what you are doing to me, in your legs.
*****
(voiceover) With Winnicott, we have come full circle
Motherhood is psychogenic by nature.
*****
(I) Do you agree with the idea of maternal madness?
That every woman, every mother goes through the first months after delivery a stage of madness that can later be problematic for the infant if it lasts?
(AS) Yes, yes ,but this name maternal madness does not disturb me at all.
(I) You are a psychiatrist, madness is definitely something with a negative meaning isn't it?
(AS) Not for me
*****
(Laurent Danon-Boileau) There is this idea that is usually called the maternal madness of the first times
There is a moment when the mother is so glad to have her brat that she is the one with the brat and there is no way anyone could intervene
(I) Why call this madness, by the way?
(LD) Because of this idea of some sort of wholeness that gives some kind of powerful might.
There is this idea that, starting when you have done such a thing, you are almighty, nothing can reach you, etc etc.
*****
(GL) You know, madness, it's the first  month of life
But the thing is we have all been mad, or almost
(I) Why call this thing, this capacity for the mother to decrypt and understand her child's behaviour without language, why call this madness?
(GL) Because if we stopped there, the child would go into madness
Madness is precisely what you were asking about earlier about autism; they stopped there
*****
(LD) Maternal madness, is maternal madness a major roadblock to the emergence of language?
Said like that, of course, yes!
*****
(25:40)(AN) The mother is one the side of nature.
and from this standpoint, she is animal, if you want.
whereas the father was the one who founded culture
This is what made Claude Levi Strauss say this superb definition when he speaks about the couple.
He says that it is the dramatic union of nature and culture.
You see, when law supports culture, claiming that there is something fatherly, it means we are in the culture, return to nature shall not happen.
(interlude)
(voiceover) In the course of my interviews, several psychoanalysts had asserted that autism was the consequence of a maternal incest
*****
(AS) The maternal function consists of intervening in two ways
On the one hand saying no to the fusion between mother and the child
The father is the one forbids the mother
(I) He forbids sexually? Right?
(AS) Who forbids the pleasure of the mother
Namely, without ambiguity, who forbids that the child takes pleasure exclusively with his mother
as well as the mother takes pleasure exclusively with the child
*****
(Jacqueline Schaeffer) At the child's birth there is a honeymoon, right?
Sometimes, it is not so much of a honeymoon, it can be dramatic
But there is a honeymoon, there is a fusion, there is an extraordinary
Well, at the same time, there is a huge pleasure together
The baby very quickly, well, there is what we can say
There is not sex difference but there is a big erotic pleasure taken together
*****
(I) The fact that a mother takes care of her child like a human being, this is not sexual
(YB) Well, yes it is!
Sexuality, in a first place, is not in the sense that all take it, as genital sexuality
It is everything that, to Freud, because he is the one who theorized this, will be the body's parts that will give pleasure to the child
So the child and mother bodies are there in a tight unison and even the infant child does not know that he is not his mother's body.
He thinks they are one.
Well, he thinks - we attribute t his to him - he thinks he is one with his mother.
(29:36)So, it is a work of separating the bodies.
And the pleasure that the child will get in his relationship with the other, who is first his mother, will happen, one, in a clinch
And two, the pleasure will be related to the different orifices of the body.
*****
(LD) There are psychoanalysts who, a long time ago, have talked about something they called the lover's censorship.
This means something very simple.
It means that the mother is changing the infant and that all of a sudden; she takes too much pleasure by touching the infant
And she feels, oh la, this is strange
It is not logical; I am not treating him like
(I) An incestuous thing?
(LD) Something a little incestuous, what's going on?
Well, she will think of the man with whom she conceived him, in other words her lover.
And therefore, this will create a distance between herself and the infant.
This is what we call the lover censorship.
(I) She has to have a man on her mind for her not to be in an incestuous relationship with her child?
(LD) It's not "she has to" - one cannot avoid it!
*****
(JS) During maternal care, the mother can very well arouse the penis of a little boy.
I mean, maternal care, and the little boys do not avoid this!
We see many little boys who, when they get changed, when they get washed by the mother, the little penis reacts
*****
(YB) The father is there to forbid and at the same time protect the child.
That is, to protect the child from the incestuous desire of the mother.
(I) Do you think that all mothers have incestuous desires towards their child?
(YB) Oh yes, whether they are aware of it or not! Yes!
(I) Why are you so sure?
(YB) Well, first from psychoanalytic writings.
I mean, desire is not forbidden, its fulfilment is.
(I) But, that the love of a mother for her child is an incestuous desire, this is-
(YB) Well yes, because she already has some trouble to separate from her child.
There is a unity that gets done only if the father of the child, or the one in charge of this who is not necessarily the genitor, does not come and tell the mother that enjoyment has to happen between them.
Does not remind his desire to the mother, and the pleasure that she will be able to have through the desire that ties them together.
The mother will have pleasure by caressing her child
By having him on her body all day, what else, she will have pleasure
And, back to your previous question, this is how the body will present and that sexuality, insofar as it is related to body pleasure, and that is reused in language, is naturally present in the questions of psychoanalysts.
(I) Then, why are most of the incests perpetrated by men?
*****
(AN) First we have to notice that father-daughter incest is definitely more frequent than mother-son incest
And why are there not, or no more, mother-son incests?
For a very simple reason, which is that the motherly attitude to children, whether they are boys or girls, is spontaneously an attitude of incestuous essence.
Every mother's dream is that her child does not lack anything
The motherly tendency towards the child is an incestuous tendency
And there is no need to act. In her attitude, there is already enough, she does not act.
*****
(JS) Paternal incest does not cause so much damage. It makes the girls a little moronic.
But maternal incest creates psychosis. That is, madness.
There cannot be a maternal incest between a boy and his mother without an enormous mental disorder. It is not possible.
Precisely because of this barrier.
But the daughter with the father, she did not come out of the father, right she has not been in the father's belly
So there is something, you see. I'd say it is a secondary incest.
Whereas the primary incest, the real one, it is the mother
It is to penetrate the mother.
And boys who penetrate their mother are psychotic.
Whereas the daughter is not.
The girls can, we have many experiences with daughters with a paternal incest, they can manage somehow.
Now, I can't say that it works very very well
Some of them are very very bad, some a little less so
And there are those who manage by some other way
What I was saying, a little moronic.  But it is very different.
(interlude)
(voiceover) To psychoanalysts, the father is guilty too.
Guilty of being absent or transparent, guilty of being submissive to his wife.
Guilty of having been unable to intervene between the child and the maternal ogre.
*****
(GL) He failed.
Often, do you know how many times we see fathers who would have liked to?
and this is what we call forclusion
Forclusion of the father’s name
(I) What does it mean?
(GL) Good question!
It means that the father, in simple terms has made the child but that he (the father) does not exist.
It is denied, his existence is denied.
(I) Does the mother deny his existence?
(GL) Denies his function, his existence. There is only her and the child who count
The father does not exist.
Maybe he is there to bring some money in, he is here like an extra
He does not have the function of the husband, loved, considered in his speech
When the mother considers the father’s speech, the child discovers speech.
(I) If the child does not speak, it is because the mother discredits the father’s word?
(GL) Well, there are not so many here; it is mostly in institutions; in psychiatric clinics, where I had severe autists.
*****
(ES) Fundamentally, the father’s function is symbolic.
And sometimes the real father does not carry this symbolic function.
He can be adorable and nice, but nevertheless the child faces a symbolic deficiency on the side of the paternal function.
*****
(36:26)(GL) Either he does not have room or he only exists through violence, or he is violent himself.
We sometimes realise that he is violent to exist.
And that he pries doors open in a way, when no one opens them for him!
*****
(ES) When on speaks about the paternal function it is about something that drives you in your life.
It is like a highway, a compass.
(I) Why wouldn’t the mother, as a woman, provide the child this basis? Even on her own?
(ES) There are some mothers who can transmit a paternal function.
(I) But why isn’t it a maternal function? Why isn’t it a maternal symbolic? Why give it a gender?
(ES) The law of the mother is the law of whim.
*****
(AN) In 1984, a biologist established this extraordinary proof that placenta is from exclusive paternal origin.
So that it is under the control of genes brought by the spermatozoon.
In other words, the placenta is what prevents the mother from destroying her child, and a child from killing his mother.
(I) What enables the mother to feed her child?
(AN) Yes, that allows, that transfers and filters all the food the mother brings him.
In other words, it is a regulating element between them, this placenta it is an interposition.
I mean it feels like the father’s attitude within the decisions he takes, this patriarchy that he sets up, this male domination, etc., has always been the empirical search of the function that the placenta holds.
And that lets every child come into the world without being destroyed.
(interlude)
(voiceover) Since Bruno Bettelheim, the major psychoanalytic principle for the treatment of autistic children consists in separate children from their parents.
Parents are sometimes subject to pressure to undergo therapy because they are considered the source of the problem.
Today still in France and Belgium a number of psychiatric institutions are places that are not accessible to families, who are not informed of what goes on.
What does the psychoanalytic treatment of autistic children consist in?
*****
(ES) Let’s say that when we receive an autistic child we practice a psychoanalysis that is pure invention.
We are facing a subject who, most of the time, cannot speak.
*****
(LD) I am rather like in an observation attitude.
I mean, with an autistic child, I do very little.
What does very little mean?
That I sit my butt down close to him, and I wait for something to happen.
And I forget, I try to forget everything.
I forget time, I forget that we are pressed by time for him to acquire language, I forget everything.
Because I tell myself that, since I am in this kind of weightlessness, there could well happen something that I can not foresee.
*****
(41:20)(AS) You have authors like Tustin or Magaret Mahler who explain how it is first about winning over the child.
Here we are in a practice, but it is the same in an institution.
Winning over the child. I do not remember which of them describes this.
It is about stepping a little back, not in his line of sight.
Not speaking too loud, rather following what he says than anticipating it.
*****
(ES) No willingness of control, no educative willingness
No compelling of anything.
*****
(BG) We finally try by all means to make the autistic child feel that another one exists who is not threatening.
*****
(ES) It is precisely about taking into account the most insignificant details and figure out that this insignificant detail can be interpreted with some meaning.
And bit by bit we can proceed by supposing that there is a sign and we take it as something like the intent of a speech.
*****
(LD) Personally, if the kid does not do anything during the session, if I drowse beside him, I don’t care.
I am used to that in my work as a psychoanalyst.
But this implies a few things.
One, it implies not getting bored when we think with our own ideas.
Two, it implies rowing against this whole social thing that pushes you to be pressed by time it is all very nice, but if nevertheless if the child is still like that in ten years, it’s not on you to … etc.
All this is true; I stay in the position of a psychoanalyst, which means having no memory, no expectation.
And starting from then, something happens.
And that is an attitude, I believe, that is a deeply psychoanalytic attitude.
*****
(BG) When… Perhaps… Well..
I am sensitive to what you tell me that the audience should feel that we accept to fully endorse our convictions.
*****
(LD) If you sing a little song, and that the autistic child doesn’t feel bad with it there is something happening.
So you’re going to tell me, there is no need of a psychoanalyst for that.
Yes, if you are not using it as an educative method.
Yes, if you that that after all I don’t care about what the child will do with it.
It seems like he seems interested
We do that and we’ll see what happens then. Or we won’t see then.
The fundamental point in my attitude as a psychoanalyst with respect to these children it is to abdicate the idea of a progress.
And this is not easy, you can believe me.
My analytic ideal demands to abandon this dimension, but it turns out that I belong to a society in which I am paid to give care.
Consequently, I am in a conflict.
But this, a situation of conflict an analyst must be able to endure it or he takes another job!
Because this is the basis of our analytic practice.
*****
(I) What is the impact of psychoanalysis on autistic children?
What can an autistic child reasonably expect in terms of result?
(PD) But I can’t answer this, this is not a matter for a psychoanalyst!
*****
(I) What can an autistic child reasonably expect from an analytic work?
In terms of results?
(45:20)(LD) (very long pause) the pleasure of taking interest in a soap bubble.
I can’t answer anything else.
(interlude)
(voiceover) Nevertheless, there are solutions.
they are called PECS, TEACCH, and ABA.
These educative and behavioral methods have been set up in the USA over thirty years ago to enable people with autism to communicate, open up to the world.
Thanks to these tools that are appropriate to their handicap, young autistic children make, in a few months, significant progress.
Unfortunately, psychoanalysts fiercely stand in the way of their establishment in France.
*****
(AS) In the French speaking world the invasion of cognitive behavior techniques is a new invasion.
Recent, but very present today.
Psychoanalysis fights against this invasion
A number of colleagues, in particular Jacques Alain Miller have taken the lead of this struggle, this fight.
Others too in others organisations.
It is a very important fight to keep alive the dimension of subjectivity or the singularities of each subject with respect to the behavioral idea of managing by squares.
*****
(Eric Laurent) You know, it is for psychoanalysis to be this device of disenchantment.
there are hopes that come from biology, it could be marvellous to believe in them!
If one can believe that tomorrow, tomorrow we will have the solutions!
Well, psychoanalysis, as a speech that illuminates all beliefs tries to enable humanity to live without believing too big whims, it’s part of our effort.
So, the dialogue with neurosciences, is not only to inform ourselves of the results and let know that it does not alter our fundamental practice, the orientation of our practice, it is also about trying to make humanity live without having too big hopes in the various good news that are published every day that are intended to keep a rate of good news in an environment that has so little.
*****
(voiceover) In the 80’s, 100% of the French psychiatrists and psychologists were trained in psychoanalysis.
Since the 90s this trend is declining, but they are still near 80% today.
This situation, unique in the world, except Argentina, has tremendous consequences in the care of the handicapped.

(updated 24th January 2012)

Thursday, 19 January 2012

Novelty, interest and replicability


So at last, your paper is written. It represents the culmination of many years’ work. You think is an important advance for the field. You write it up. You carefully format it for your favoured journal. You grapple with the journal’s portal, tracking down details of recommended reviewers and then sit back. You anticipate a delay of a few weeks before you get reviewer comments. But, no. What’s this? A decision letter within a week: “Unfortunately we receive many more papers than we can publish or indeed review and must make difficult decisions on the basis of novelty and general interest as well as technical correctness.” It’s the publishing equivalent of the grim reaper: a reject without review.

It happens increasingly often, especially if you send work to journals with high impact factors. I’ve been an editor and I know there are difficult decisions to make. It can be kinder to an author to reject immediately if you sense that the paper isn’t going to make it through the review process. One thing you learn as an author is that there’s no point protesting or moaning. You just try again with another journal. I’m confident our paper is important and will get published, and there’s no reason for me to single this journal out for complaint. But this experience has made me reflect more generally on factors affecting publication, and I do think there are things about the system that are problematic.

So, using this blog as my soapbox, there are two points I’d like to make: A little one and a big one. Let’s get the little one out of the way first. It’s simply this: if a journal commonly rejects papers without review, then it shouldn’t be fussy about the format in which a paper is submitted. It’s just silly for busy people to spend time getting the references correctly punctuated, or converting their figures to a specific format, if there’s a strong probability that their paper will be bounced. Let the formatting issues be addressed after the first round of review.
The second point concerns the criteria of “novelty and general interest”. My guess is that our paper was triaged on the novelty criterion because it involved replication. We reported a study that involved measuring electrical brain responses to sounds. We compared these responses in children with developmental language impairments and typically-developing children. The rationale is explained in a blogpost I wrote for the Wellcome Trust.
We’re not the first people to do this kind of research. There have been a few previous studies, but it’s a fair summary to say the literature is messy. I reviewed part of it a few years back and I was shocked at how bad things were. It was virtually impossible to draw any general conclusions from 26 studies. Now these studies are really hard to do. Just recruiting people is difficult and it can take months if not years to get an adequate sample. Then there is the data analysis which is not for the innumerate or faint-hearted. So a huge amount of time and money had gone into these studies, but we didn’t seem to be progressing very far. The reason was simple: you couldn’t generalise because nobody ever attempted to replicate previous research. The studies were focussed on the same big questions, but they differed in important ways. So if they got different results, you couldn’t tell why.
In response to this, part of my research strategy has been to take those studies that look the strongest and attempt to replicate them. So when we found strikingly similar results to a study by Shafer et al (2010) I was excited. The fact that two independent labs on different sides of the world had obtained virtually the same result gave me confidence in the findings. I was able to build on this result to do some novel analyses that helped establish direction of causal influences, and felt we at last we were getting somewhere. But my excitement was clearly not shared by the journal editor, who no doubt felt our findings were not sufficiently novel. I wasn’t particularly surprised by this decision, as this is the way things work. But is the focus on novelty good for science?
The problem is that unless novel findings are replicated, we don’t know which results are solid and reliable. We ought to know: we apply statistical methods with the sole goal of establishing this. But in practice, statistics are seldom used appropriately. People generate complex datasets and then explore different ways of analysing data to find statistically significant results. In electrophysiological studies, there are numerous alternative ways in which data can be analysed, by examining different peaks in a waveform, different methods of identifying peaks, different electrodes, different time windows, and so on. If you do this, it is all too easy for “false positives” to be mistaken as genuine effects (Simmons, Nelson, & Simonsohn, 2011). And the problem is compounded by the “file drawer problem” whereby people don’t publish null results. Such considerations led Ioannidis (2005) to conclude that most published research findings are false.
This is well-recognised in the field of genetics, where it became apparent that most early studies linking genetic variants to phenotypes were spurious (see Flint et al). The reaction, reflected in a recent editorial in Behavior Genetics has been to insist that authors replicate findings of associations between genes and behaviour. So if you want to say something novel, you have to demonstrate the effect in two independent samples.
This is all well and good, but requiring that authors replicate their results is unrealistic in a field where a study takes several years to complete, or involves a rare disorder. You can, however, create an expectation that researchers include a replication of prior work when designing a study, and/or use existing research to generate a priori predictions about expected effects.
It wouldn’t be good for science if journals only published boring replications of things we already knew. Once a finding is established as reliable, then there’s no point in repeating the study. But something that has been demonstrated at least twice in independent samples (replicable) is far more important to science than something that has never been shown before (novel), because the latter is likely to be spurious. I see this as a massive challenge for psychology and neuroscience.
In short, my view is that top journals should reverse their priorities and treat replicability as more important than novelty.
Unfortunately, most scientists don’t bother to attempt replications because they know the work will be hard to publish. We will only reverse that perception if journal editors begin to put emphasis on replicability.
A few individuals are speaking out on this topic. I recommend a blogpost by Brian Knutson who argued, “Replication should be celebrated rather than denigrated.” He suggested that we need a replicability index to complement the H-index. If scientists were rewarded for doing studies that others can replicate, we might see a very different rank ordering of research stars.
I leave the last word to Kent Anderson: “Perhaps we’re measuring the wrong things … Perhaps we should measure how many results have been replicated. Without that, we are pursuing a cacophony of claims, not cultivating a world of harmonious truths.”


Simmons, J., Nelson, L., & Simonsohn, U. (2011). False-Positive Psychology: Undisclosed Flexibility in Data Collection and Analysis Allows Presenting Anything as Significant Psychological Science, 22 (11), 1359-1366 DOI: 10.1177/0956797611417632

Saturday, 7 January 2012

Time for academics to withdraw free labour


© www.CartoonStock.com
Jack is a sheep farmer. He gets some government subsidies, and also works long hours to keep his sheep happy and healthy. When his beasts are ready for slaughter, he offers them to an abattoir. The abattoir is very choosy and may reject Jack’s sheep, which is a disaster for him, as there is no other route to the market. If he is lucky the abattoir will accept the animals, slaughter them and sell them, at a large profit, to the supermarket. Jack does not see any of this money. The populace struggle to afford the price of meat, but the government has no control over this. When Jack feels like a nice piece of lamb, he buys it from the supermarket. Meanwhile, Jack provides his services for free as an inspector of other farmers’ animals.
Crazy story, right? But that’s the model that academic publishing follows. Academics work their butts off to get research funding, often from government. They then do the research and write up and submit it for publication. They run the gauntlet of picky reviewers and editors to get the work accepted for publication. Once it is published, it appears in a journal which is sold on to academic institutions for large profits. Post publication, the academic often has to pay a cost equivalent to several hardback books to get a formatted electronic copy of the article. Meanwhile, the journals justify this by arguing they have extensive costs. But in fact, it is the academic community that does the bulk of the work for free, acting as editors and peer reviewers. Increasingly, they are expected also to do copy editing and graphic design, tasks that were previously undertaken by professional journal staff.
It has taken many years for the torpid academic community to wake up to this ludicrous situation, but things are slowly starting to change. In some fields, academics are starting to take things into their own hands and cut commercial publishers out of the loop, but this still the exception rather than the rule. A more widely adopted innovation has been Open Access publishing. On the one hand, electronic publishing has made it possible for journal papers to be posted online and made freely accessible. On the other, major funders, notably NIH in the USA and the Wellcome Trust in the UK, have insisted that researchers whom they fund must make their published work Open Access. Obviously, something has to give: the publishers are not going to do their work for nothing. But the system does work, with a combination of new journals that are Open Access from the start, and older ones agreeing to make selected articles Open Access, in both cases for a fee. In general, the funders agree to pay the charge.
This week, however, a story broke suggesting that the traditional publishers are trying to fight back and force NIH to backtrack on its Open Access policy. Things hotted up with this post from Michael Eisen who noted that one major publisher, Elsevier, has been lobbying a NY Congresswoman, Carolyn Maloney, to persuade her to support a bill that would limit Open Access publishing. Harvard University gave a detailed response to the bill, which can be found here.
I want my response to this story to go beyond just tut-tutting and shaking my head.  Academics do have some power here. We provide the articles for Elsevier journals, and we do a lot of unpaid work reviewing and editing for them. None of us wants to restrict our opportunities for publishing, but these days there are a lot of outlets available. When deciding where to submit a paper, I suspect that most academics, like me, take little notice of who the publisher of a journal is. I focus more on whether the journal has a good editor, my prior experience of publication lags, and whether Open Access is available. But as from now, I shall include publisher in the criteria I adopt, and avoid Elsevier as far as I can. Also, if asked to review for a journal, I’ll check if it is in the Elsevier stable, using this handy website, and if so, I’ll explain why I’m not prepared to review. I suggest that if you are as annoyed as I am by this story, you do likewise, and refuse to engage with Elsevier journals.

Addendum, 10th January 2012

Some people on Twitter have asked if people should be paid for the work they do as author/editor/reviewer. Definitely not. It would just make matters worse, because publishers would factor in these costs and charge even more for journals.
No, I just want a change in the model whereby publishers make enormous and undeserved profits from academics. There are various ways this could be done.
1. The publishers could charge less: currently if you try and download a single journal article, you are charged around £20, even though the production costs are minimal.
2. Retain the current model but remove commercial publishers from the loop, with publication of research limited to learned societies, universities, funders.
3. Retain the current model but make all journals Open Access, with the funder or university paying a one-off publication fee.
4. More radically, move to a system such as arxiv, which I discussed here.
On the whole, academics are an interesting bunch. We’re not all that interested in money, but we are skilled and can produce things of commercial value. It’s a golden opportunity for someone who does want to make money to step in a make a profit. Publishers like Elsevier would have been fine if they hadn’t been so greedy and had charged modest sums for their product. Instead, they pushed costs as high as the market could bear, making huge profits, while at the same time giving authors less and less. (Copy-editors have become an endangered species). Instead of facilitating scientific communication, they have put obstacles in the way. But part of the blame lies with the academic community, who have been far too passive. We should have tackled this years ago before it got out of hand.


Monday, 2 January 2012

Will I still be tweeting in 2013?


A new phenomenon has occurred in my Twitter timeline of late. These are tweets from people I don’t follow that are labelled ‘Promoted Tweets’. When I see one, I block the sender. At present, they are rare enough for this to be only mildly irritating. But, as someone who remembers email in the days before spam (well, actually, I remember the days before email, and even the days before personal computers...), I worry that things could change fast.
When discussing Twitter with fellow academics, one thing they always ask is whether it isn’t just another tedious thing that you have to wade through, like email. Email is currently the curse of academics everywhere: in her New Year’s blogpost, Athene Donald noted her resolution to delete spam emails unread first thing in the day, and commentators on her blog clearly resonate to this, as I do. I have been cheerfully telling people that the wonderful thing about Twitter is that you only get messages from people you choose to follow, and it's not at all like email. Other people can’t get at you. Well, they can, a bit, in that they can get into your ‘mentions’ list by mentioning you, but your timeline has always been totally under your control. But the folks at Twitter have other plans, as explained here.
Needless to say, Twitter is a business. It’s not my God-given right to have a free Twitter account. If I engage with the system, I need to play by its rules. But I really am not that addicted. To me, having to fend off people who want my time, money or attention is extremely tedious. Twitter has been a delight precisely because it has been virtually free of such irritants. Make Twitter more like email, and I will just leave. Really.

Friday, 30 December 2011

Publishers, psychological tests and greed

© CartoonStock.com

There was an intriguing piece in the New England Journal of Medicine this week about a commonly used screening test that indicates if someone is likely to have dementia. The Mini Mental State Examination (MMSE) is widely used throughout the world because it is quick and easy to administer. The test is very simple: you need no equipment, and the eleven items, involving questions to test orientation (e.g. “Where are we?”) and language (e.g. “What is this?” while showing the patient a wristwatch) are reproduced at the end of the original article about the MMSE, which was published in 1975.
The problem is that now the authors have taken steps to license the test, so that it has to be purchased from Psychological Assessment Resources. The cost is modest, $1.23 per test, but nevertheless more than the cost of photocopying one side of paper, which is what people have been doing for years. And of course, if people have to use only officially purchased copies of MMSE there are the additional costs of raising purchase orders, postage, storing packs of forms, and so on.
I’ve got a particular interest in this story, as I have published psychological tests, both off my own bat, and through a test publishing company. I started out in the late 1970s, when I developed a test of children’s comprehension called the Test for Reception of Grammar (TROG). This was more complicated than MMSE in two important respects. It involved lots of brightly coloured pictures as well as a record form, and in order to decide if a child had comprehension problems, I needed to establish how well typical children performed at different ages. The latter process, known as test standardisation, is not a trivial task, because you have to test lots of children to get a good estimate of the range of scores as well as the average score at different ages. This early work was done as part of a study funded by the Medical Research Council (MRC), but I assumed that, if the project worked out, we’d need a test publisher, and so I contacted one. The project involved two big costs. First there was the cost of my time and effort in devising the test, finding reliable people to test hundreds of children nationwide, analyse the results and write the manual. The other cost was printing colour test booklets. I had assumed that the test publisher would be willing to cover this, but they weren’t. They suggested that the MRC should find another several thousand pounds to cover printing. Now this made me cross. The publisher would get for free a fully standardised test that they could sell, no doubt at vast profit, but they wanted someone else to foot the bill for production costs. MRC were actually making quite positive noises about finding the money, but I was irritated enough to explore other options. I found a local printer and learned about the arcane world of different colour separation processes, and came away with a reasonable quote. I also discovered something quite interesting. The costs were all in the initial process of creating plates: the actual printing costs were trivial. This meant that it cost no more to print 1,000 picture books than the 100 copies I needed. And the costs of printing record forms were trivial. I returned to MRC and suggested we left the publisher out of the equation, and they agreed. All proceeded very smoothly, but once the standardisation was completed, I had a problem. There were 900 unused copies of the picture book. I discussed with MRC what we should do. They suggested I could give them away, but this would mean the test would become obsolete as soon as all the copies were used up. In the end, we reached an agreement that I could sell the test in a kind of cottage industry, and share any profits with MRC. And so I did for about the next 15 years. I didn’t bother to copyright the test because it was cheaper to buy it from me than to photocopy it. Nevertheless, I made a nice profit, and took considerable pleasure in telling the publisher to piss off some years later when they approached me expressing interest in TROG.
My next foray into test publishing was with a four-page questionnaire, the Children’s Communication Checklist (CCC). As with TROG, I hadn’t set out to devise an assessment: it came about because there wasn’t anything out there that did what I wanted, so I had to make my own instrument. I published a paper on the CCC in 1998, and listed all the items in an Appendix. I had a problem, though. I was getting busier all the time. For some years I had been paying graduate students to look after TROG sales: the weekly trip to the post office with heavy parcels had become too much of a chore. And every time I moved house, there was the question of what to do with the stock: boxes of picture books and record forms. I also realised that TROG was getting out of date - it’s well recognised that tests need restandardising every ten years or so. I also wanted to develop a test of narrative language.  And the CCC was far from perfect and needed revamping and standardising. So I took the big step: I contacted a test publisher. A different one from before. To cut a long story short, they put money into the standardisation, covered production costs, and offered highly professional editorial support. There are now three of my tests in their catalogue. 
The upside for me? The tests are actually marketed, so sales are massive compared with my cottage industry activities. And I no longer have to keep a cellar full of cardboard boxes of stock, or concern myself with organising printing and despatching tests, or dealing with complaints from someone whose finger was cut by an injudiciously placed staple. There is a downside, though. The tests are far more expensive. Having done the publishing myself, I know a little secret of the test publishing business: they don’t make their profits from actual test materials such as coloured picture books or IQ test kit. The profits are all in the record forms. These cost peanuts to produce and are sold at a mind-boggling mark-up.
I went into the deal with the publisher with my eyes open. They are a business and I knew they’d make profit from my academic work - just as journal publishers do. I reckon they’ve done more to deserve that profit than most journal publishers, as they put money into test development. That involved taking a gamble that the tests would sell. I have benefited from having a large professional organisation promoting my work, and I do get royalties on the tests. I recycle these back to a relevant charity, and there’s something pleasing about profits from testing children’s language being ploughed back into helping children with language problems.
But my publisher’s situation is very very different from the situation with MMSE. The only people who could plausibly argue they deserve to make money from the test are its authors: the publisher has put no money into development of the test and taken no risks. The authors appear to be claiming that the test items are their intellectual property, and that anyone who attempts to develop a similar test is infringing their copyright. But where did the MMSE items come from? A quick read of the introduction to the 1975 paper gives an answer. Most of them are based a longer assessment described in a 1971 article by Withers and Hinton. It would seem that the main contribution of Folstein et al was to shorten an existing test. I wonder if the British Journal of Psychiatry should go after them for copyright infringement?

Newman, J., & Feldman, R. (2011). Copyright and Open Access at the Bedside New England Journal of Medicine, 365 (26), 2447-2449 DOI: 10.1056/NEJMp1110652

P.S. Another post that includes some information on how MMSE was developed.

You can read more by scrolling down to "The Mini Exam with Maximal Staying Power" on this site from 2007.

Sunday, 18 December 2011

NHS research ethics procedures: a modern-day Circumlocution Office


In Little Dorritt, Charles Dickens rails against the stifling effects of bureaucracy:
No public business of any kind could possibly be done at any time without the acquiescence of the Circumlocution Office.… the Circumlocution Office was down upon any ill-advised public servant who was going to do it, or who appeared to be by any surprising accident in remote danger of doing it, with a minute, and a memorandum, and a letter of instructions that extinguished him.
 Substitute “NHS research ethics procedures” for Circumlocution Office, and “researcher” for public servant, and you have a perfect description of a contemporary problem.

December 2010
My programme grant has been running now for over a year, and it’s time to gird up my loins to tackle NHS ethics. I’ve had plenty of other research to keep me busy, but I’m aware that I’ve been putting off this task after earlier aversive experiences. “Come on,” I tell myself, “you deal with unpleasant and bureaucratic tasks regularly - reviewing grants, responding to reviewer comments, completing your tax return. You really just have to treat this in the same way.”
It starts well enough. I track down a website for the Integrated Research Application System IIRAS). I start to have misgivings when it tells me that it’ll take approximately an hour to work through its e-learning training module. To my mind, any web-based form that requires training in its use needs redesigning. But I bite the bullet and work through the training. Not too bad, I think. I can handle this. I start to complete the form. I’m particularly happy to find little buttons associated with each question that explain what they want you to say. A definite improvement, as in the earlier versions you spent a lot of time trying to work out what the questions were getting at. It also cleverly adapts so that it excludes questions that aren’t relevant to your application. This turns out to be a two-edged sword, as I discover some weeks later. But at present I am progressing and in a cheerful mood.
The process is interrupted by need to travel from Australia to UK, Christmas, snow, massive revision to do to address reviewer comments on a paper, etc.

January 2011
Input more information, design information sheets, consent forms, etc, etc. Still feeling buoyant. The form is virtually complete, except for some information from collaborators and bits that need to be completed by Oxford R&D. I realise we want an information video for kids who can’t read, but it’ll need to be approved, but we don’t want to go to all the trouble and expense of making it before getting approval. Discuss with helpful person from Oxford R&D, who suggests I write a script for approval. I also book in the film crew, shortlist and interview candidates for research assistant posts on the project, send draft to all collaborators for approval, and ask geneticist collaborator for help with some details. Am finding that progress is slower and slower, because navigating the form is so difficult: it displays one page at a time and does not scroll. You can specify a question to go to, but it’s not easy to remember which questions correspond to which numbered item, and so you end up repeatedly printing out the whole form and shuffling through a mountain of paper to find the relevant question. Keeping things consistent is a big headache.

February 2011
Two weeks’ holiday, then enter final details that were sent to me by collaborators and send the whole lot off to R&D.
The dynamic form starts to reveal its diabolic properties when I enter a new collaborator from Cardiff, only to find that the form now pops up with a new question, along the lines of “How will you meet the requirements of the Welsh Language Act 1993?”. I won’t. We’re studying language, and all our tests are in English, so only English speakers will be recruited. Explain that, and hope it works out.
But now it gets seriously worse. I’ve entered lots of clinical colleagues as “NHS Sites”, but it turns out they aren’t sites. They are Patient Identification Centres. I have to delete them all from the form. Well, I think, at least that makes life simpler. But it doesn’t. Because now they aren’t sites any more, new questions pop up. Who will do the patient recruitment, and how will we pay for it? This one is a Catch 22. Previously our research assistants have been supervised by a consultant to go through records to find relevant cases. Some places required that you get honorary NHS status, and that could necessitate fulfilling other requirements. I actually had to get vaccinated for tetanus as part of getting an NHS contract some years ago. They said it was in case I got bitten by a child, something that has not happened to me in 35 years of researching. But I digress.  Now, it seems, even a fully vaccinated, child-proofed, police-checked researcher is not allowed to go through medical records to identify cases unless patients have given prior consent. Which, of course, they won’t have, since they don’t know about the study.
“Help!” I say to my lovely clinical colleagues. “What do we do now?”. Well, they have a suggestion. If I can register with something called CLRN, then they can help with patient recruitment. I’m given contact details for a research nurse affiliated with CLRN who soothes my brow and encourages me to go the CLRN route. I have to fill in something called a NIHR CSP Application Form which apparently goes to a body called the “portfolio adoption team” who can decide whether to adopt me and my project. All of these forms want a project start date and duration. I did have early April as notional start date, but that’s beginning to look optimistic.
Late February: comments back from R&D. Have been through application with a fine toothcomb and picked up various things they anticipate won’t be liked by the ethics committee. Impressed with the thoroughness and promptness of the response, and found the people at R&D very helpful over the phone, but my goodness, there is a lot to cope with here:
First, it seems I am still in a muddle about the definition of NHS sites, so have filled in bits wrongly that need to be entered elsewhere. Am also confused about the distinction between an “outcome” and an “outcome measure”.
Then there is the question of whether I need “Site specific forms”. The word “site” is starting to cause autonomic reactions in me. Here’s what I’m told: “Please supply an NHS SSI form for each research site; Please note for Patient Identification Centres (PICs)  R&D approval is required but you do not need an SSI form for these provided no research activity takes place on that site – taking consent to take part in the project is a research activity, giving out information on the study/advertising the study is not considered a research activity.”
I also baulk at the suggestion that I should add to the information sheet: “The University has arrangements in place to provide for harm arising from participation in the study for which the University is the Research Sponsor. NHS indemnity operates in respect of the clinical treatment with which you are provided.”  Since I don’t understand what this means, I doubt my participants will, and the participants aren’t receiving any clinical treatment. Out of curiosity, I paste these two sentences into a readability index website. It gives the passage a Flesch-Kincaid Grade Level of 22, with readability score of 4 (on a scale of 0 to 100, where 100 is easy). I try to keep my information sheets at maximum 8th grade level, so reword the bits I do understand and delete the bits that seem irrelevant or incomprehensible.
I reluctantly went along with the idea that I should devise an “Assent form” for children. This is like a kiddie consent form, but with easier language, to be signed by both child and researcher. They seem to be a blanket requirement these days, regardless of the level of risk posed by research procedures. I dislike the Assent form because I am not sure what purpose it serves, other than to make children nervous about what they are getting themselves into. It has no legal status, and we can’t gather psychological test data from unco-operative children. Others share my view that this requirement is incoherent and wrong. But I want to do this study, so feel I have no choice. I had a look on the web and NHS guidance sites to look at suggested wordings, and did not like them, so did a modified and simplified version I hoped would be approved. It would be interesting to do some research on Assent forms to see how they are perceived by children.

March 2011
Hooray! By the start of March, I’m ready to submit my forms. Since  IRAS is all electronic, I had assumed I would do it with a button press, but that would be too simple. Multiple copies must be sent by snail mail within a specific time frame. There has been serious research on the environmental impact of this. But first there is the question of booking an appointment with an ethics committee. There’s a whole centre devoted to this task, and they have standard questions that they ask you about the nature of the research. I was doing well with these until we got to the question about children. Yes, I was going to do research with children. Ah, well then I couldn’t go to any old ethics committee, I had to go to one with a paediatrician. And, unfortunately, there weren’t any slots on committees in Oxfordshire with paediatricians. But, said the helpful girl on the phone, I could try calling the Oxfordshire people directly and they might be able to book me in. At 12.05 I call the number I’ve been given, only to get an automated message saying the office is only open from 10 to 12. Since the following morning I’m busy (I am trying to do my regular job through all this), despair starts to set in. But I break out of a meeting to call them the next morning. The phone rings. And rings. Back to my meeting. Break out again, repeat experience. Eventually I get through. Person at end of phone takes me through the same list of questions about type of research, and finds a convenient slot with an Oxfordshire committee, which I can make if I move an appointment. Move the appointment. Get called back to say that committee can’t unfortunately take me, because they don’t do proposals with children. Am offered another slot on a day when I have arranged to examine a PhD in London. Next one in Oxford is a month later, well after the proposed start date for the research. Best they can do is to offer me a slot with a Berkshire committee, who do have a paediatrician and are just one hour’s drive away, and which is later than the original slot, but sooner than the Oxford one. I decide to go for it. I then receive a remarkable document with a lot of multicoloured writing, which gives me a booking confirmation number, and a lot of instructions.

This triggers a frantic process because you then have seven days to get all the material delivered to the ethics committee. This may not seem difficult, except that all the information sheets and consent forms need to have little header put on them with the booking number and date, and they also want copies of things like a CV, copies of test forms and suchlike, and worse still, there have to be signatures not just from me but also from R&D, who are in a hospital a couple of miles away up a hill. Unfortunately coincides with a period when my PA is absent, and so I rush around like a demented cockroach getting this all together. I’d not budgeted much time for this bit, as I’d assumed submission would involve pressing a button on my computer and uploading some attachments and my diary was full. Somehow I had to find a couple of hours for fiddling with forms, a trip up the hill for a signature the next day, and a journey to the post office to ensure it would all get delivered on time.
I also needed to get the documents to CLRN. This could be done by email, but that soon bounced back. Once more the critical distinction between sites and centres eluded me, and I was told that I had to submit corrected documents because:
 “In Part C, if the only research site is the University of Oxford and the other organisations listed are Participant Identification Centres (PICs), there should be listed under the heading Participant Identification Centre(PIC)Collaborator/Contact immediately below the University of Oxford entry, and not separately.”
So back to the form again to alter this bit. At last it is accepted. But this now triggers new emails, including one from London saying:
“We have been notified that you may be participating in the above study. If the Chief Investigator or Study Coordinator confirms this, Central and East London CLRN will be supporting you locally through the NIHR CSP process and we look forward to working with you on this project.
If this is confirmed, please email all relevant documents to me when you submit your SSI Form through IRAS. The documents you need to submit are listed on the Checklist tab within your SSI Form in IRAS…..etc etc”
The SSI form was one I thought I didn’t have to complete, so I phoned the number given on the email, who said they couldn’t comment and I should ask Oxford, so I asked Oxford, who agreed I didn’t need to do anything.
Meanwhile, there’s yet another form that has popped up that wants to know what training in ethics the researchers have had. Since I haven’t had formal training, I’m told I can either go on a half-day course, or take an on-line course in five modules, each lasting around 45 minutes. I try the online course, but find most of the material is not relevant to me. It starts with pictures of concentration camp victims to emphasise why people need to be protected from reseachers, then goes on to give information focussed on clinical trials. I’m not doing a clinical trial. The quizzes at the end of each module don’t seem designed to check whether you have mastered the subtleties of ethical reasoning, so much as whether you know your way around the bureaucratic maze that is involved in ethical approval, and in particular whether you understand all the acronyms.

April 2011
The six weeks from early March to mid April were joyfully free from communications with ethics people, and normal life resumed. My new staff took up their posts and we made a start on filming for an information DVD for the project, and decided that we would delay the editing stage until after the Berkshire meeting. The day of the committee meeting dawned sunny and bright and I drove off to Berkshire, where I had a perfectly reasonable chat with the ethics committee about the project for about 15 minutes. The Paediatrician was absent. I explained I wanted to assemble the information video, but was told I had to wait until I received a letter documenting changes they’d want me to make. When this arrived, about a week later, they wanted some minor rewording of one sentence. This would be trivial for a written information sheet, but entailed some refilming and careful editing. In addition, the committee raised a point that had not been discussed when I met with them, namely that they were concerned at a statement we had made saying we would give feedback to parents about their children’s language assessment if we found difficulties that had not previously been detected. This, I was told, was an incentive, and I should “soften” the language. This was seriously baffling, as you either tell someone you’ll give them feedback or you don’t. I could not see how to reword it, and I also felt the concern about incentives was just silly. I sent them a copy of a paper on this topic for good measure.

May 2011
Oh frabjous day! At last I receive a letter giving consent for the study to go ahead. I think my troubles are over, and we swing into action with those parts of the project that don’t involve NHS recruitment. But joy is short-lived. I am only just beginning to understand the multifarious ways in which it is possible to Get Things Wrong when dealing with the Circumlocutions Office. I now start to have communications with the CLRN, who want copies of all documentation (including protocol, consent forms, the information video, etc etc - a total of 15 documents) and then tell me:
“The R&D Signature pages uploaded to the doc store on 27th June 2011 do not marry up with the R&D Form uploaded on 15th March 2011”
Requests for new form-filling also come in from the CCRN Portfolio. I’m getting seriously confused about who all these people are, but complete the form anyway.
And, worst still, in August I get a request from TVCLRN for a copy of  the letter I sent to Berkshire in which I responded to their initial comments. I had written it at a time when my computer was malfunctioning so it’s not with other correspondence. I spend some time looking on other computers for an electronic copy.  It seems that without a copy of this letter, they will not be satisfied. Anyhow, I think this will be simple to sort out, and phone the Berkshire ethics committee to ask if they could please send me a copy of the letter that I had written to them. Amazingly, I’m told that “due to GCP guidelines” the Berkshire ethics committee cannot give me a copy. Stalemate. I can’t actually remember how we dealt with this in the end, as my brain started to succumb to Circumlocution Overload.

The last 6 months
We have a meeting with the clinical geneticists with whom we’re collaborating, and I find that most of them are as confused as I am by the whole process. We discuss the Catch 22 situation whereby we aren’t allowed to help go through files to identify suitable patients because of ethical concerns, which means they have to take time out of their busy schedules to do so. This is where the CLRN is supposed to help, by providing research nurses who can assist, but only if we complete loads more paperwork. And having done this, after months of to-ing and fro-ing with requests for documentation or clarification, one of the CLRN centres has just written this week to say they can’t help us at all because they are a Patient Identification Centre and they need to be a PI, whatever that is. I’m currently trying to unravel what this means, and I think it means that they have to become an NHS Site - which was what I  had originally assumed when I started filling in the forms. But in order for them to do so, there are yet more forms to complete.
Meanwhile, in October, I had a request from the UKCRN saying I needed to upload monthly data on patient recruitment in a specific format, and sending me a 35 page manual explaining how to do this. Fortunately, after several exchanges on email, I was able to establish that we did not need to do this, as the hospitals we were dealing with were Patient Identification Centres rather than Sites. But now we have a PIC that wants to become a Site, who knows what new demands will appear?
And then, this week, a new complication. The geneticists who are referring to our study need to check with a child’s GP that it is appropriate to send them the recruitment materials. But an eagle-eyed administrator spotted that this letter “was not an ethically approved form”. I was surprised at this. This is not a letter to a patient; it is a standard communication between NHS professionals. Nevertheless, my R&D contact confirmed that this letter would need approval, and that I’d have to fill in a form for a “substantial amendment”, which would then need to be approved by all the R&D sites as well as the Berkshire ethics committee.
When I expressed my despair about the process on Twitter, I had some comments from ethicists, one of whom said “If you're doing research on ppl then someone has to look after them, no?” Of course, the answer is “yes”, and in fact the project I’m working on does raise important ethical issues. As another commentator pointed out, the problem is not usually with the ethics procedures, and it is true that the IRAS form is much better  than its predecessor and guides you through issues that you need to think about and offers good advice. But the whole process has got tangled up in bureaucratic legal issues and most of my problems don’t have anything to do with protecting patients and have everything to do with protecting institutions against remote possibilities of litigation.

Concluding thoughts
1. In the summer, I was contacted by a member of the public who was concerned about the way in which a medical project done at Oxford University was being used to promote unproven diagnostic tests and treatment for a serious medical condition. I recommended that my contact should write to the relevant person dealing with ethics in the University. I was sanguine that this would be taken seriously: here was an allegation of serious infringement of ethical standards and all my dealings with our R&D department indicated they were sticklers for correct procedures. A month or so passed; they didn’t reply to the complainant. I was embarrassed by this and so wrote to point out that a serious complaint had gone uninvestigated. After a further delay we both got a bland reply that did not answer the specific questions that had been raised and just reassured us the matter was being investigated. This just confirms my cynicism about the role of our systems in protecting patients. As Thomas Sowell pointed out: You will never understand bureaucracies until you understand that for bureaucrats procedure is everything and outcomes are nothing.” 
2. The current system is deterring people from doing research. The problem is not with the individuals running the system: they’ve mostly been highly professional, helpful and competent, but they are running a modern Circumlocution Office. I’ve interacted with at least 27 people about my proposal, and that’s not counting the Research Ethics Committee members. I’m a few years off retirement and I’ve already decided that I won’t tangle with NHS Ethics again. I’m in the fortunate position that I can do research studies that don’t involve NHS patients, and I want to spend the time remaining to me engaged in the activity I like, rather than chasing pieces of paper so that someone somewhere can file them, or waiting for someone to agree that an innocuous letter from a Consultant to a GP is ethically acceptable.
3. To end on a positive note: I think there is another way. The default assumption seems to be that all researchers are unscrupulous rogues who’ll go off the rails unless continuously monitored. The system should be revamped as a mechanism for training researchers to be aware of ethical issues and helping them deal with difficult issues. For research procedures that are in common use, one can develop standard protocols that document how things should be done to ensure best practice. On this model, a researcher would indicate that their research would follow protocol X and be trusted to do the research in an ethical fashion. The  training would also ensure that researchers would recognise when a study involved ethically complex or controversial aspects that fell outside a protocol, and would be expected to seek advice from the Research Ethics Committee. The training would not revolve around learning acronyms, but would rather challenge people with case studies of ethical dilemmas to ensure that issues such as confidentiality, consent and risk were at the forefront of the researcher’s mind. This is the kind of model we use for people engaged in other activities that could pose risks to others - e.g.,  medical staff, teachers, car-drivers. Life would come to a standstill if every activity they undertook had to be scrutinised and approved. Instead, we train people to perform to a high standard, and then trust them to get on with it. We need to adopt the same approach to researchers if we are not to stifle research activity with human participants.

Further reading
Kielmann T, Tierney A, Porteous R, Huby G, Sheikh A, & Pinnock H (2007). The Department of Health's research governance framework remains an impediment to multi-centre studies: findings from a national descriptive study. Journal of the Royal Society of Medicine, 100 (5), 234-8 PMID: 17470931
Knowles, R. L., Bull, C., Wren, C., & Dezateux, C. (2011). Ethics, governance and consent in the UK: implications for research into the longer-term outcomes of congenital heart defects. Archives of Disease in Childhood, 96(1), 14-20.
Robinson, L., Drewery, S., Ellershaw, J., Smith, J., Whittle, S., & Murdoch-Eaton, D. (2007). Research governance: impeding both research and teaching? A survey of impact on undergraduate research opportunities. Medical Education, 41(8), 729-736.
Warlow, C. (2005). Over-regulation of clinical research: a threat to public health. Clinical Medicine, 5(1), 33-38.
Wilkinson, M., & Moore, A. (1997). Inducement in research. Bioethics, 11, 374-389.

Sunday, 4 December 2011

Pioneering treatment or quackery? How to decide

My mother was only slightly older than I am now when she died of emphysema (chronic obstructive pulmonary disease). It’s a progressive condition for which there is no cure, though it can be managed by use of inhalers and oxygen. I am still angry at the discomfort she endured in her last years, as she turned from one alternative practitioner to another. It started with a zealous nutritionist who was a pupil of hers. He had a complicated list of foods she should avoid: I don’t remember much about the details, except that when she was in hospital I protested at the awful meal she’d been given - unadorned pasta and peas - only to be told that this was at her request. Meat, sauces, fats, cheese were all off the menu. My mother was a great cook who enjoyed good food, but she was seriously underweight and the unappetising meals were not helping. In that last year she also tried acupuncture, which she did not enjoy: she told me how it involved lying freezing on a couch having needles prodded into her stick-like body. Homeopathy was another source of hope, and the various remedies stacked up in the kitchen. Strangely enough, spiritual healing was resisted, even though my Uncle Syd was a practitioner. That seemed too implausible for my atheistic mother, whose view was: “If there is a God, why did he make us intelligent enough to question his existence?”
From time to time, friends and relatives of mine have asked my advice about other treatments that are out there. There is, for instance, the Stem Cell Institute in Panama, offering treatment for multiple sclerosis, spinal cord injury, osteoarthritis, rheumatoid arthritis, other autoimmune diseases, autism, and cerebral palsy.  Or nutritional therapist Lucille Leader,  who has a special interest in supporting patients with Parkinson's Disease, Multiple Sclerosis and Inflammatory Bowel Disease. My mother would surely have been interest in AirEnergy, a “compact machine that creates 'energised air' that feeds every cell in your body with oxygen that it can absorb and use more efficiently”.
Another source of queries are parents of the children with neurodevelopmental disorders who are the focus of my research. If you Google for treatments for dyslexia you are confronted by a plethora of options. There is the Dyslexia Treatment Centre, which offers Neurolinguistic Programming and hypnotherapy to help children with dyslexia, dyspraxia or ADHD. Meanwhile the Dore Programme markets a set of “daily physical exercises that aim to improve balance, co-ordination, concentration and social skills” to help those with dyslexia, dyspraxia, ADHD or Asperger’s syndrome. The Dawson Program offers vibrational kinesiology to correct imbalances in the body’s energy fields.  I could go on, and on, and on….
So how on earth can we decide which treatments to trust and which are useless or even fraudulent? There are published lists of warning signs (e.g. ehow Health, Quackwatch), but I wonder how useful they are to the average consumer. For instance, the cartoon by scienceblogs will make skeptics laugh, but I doubt it will be much help for anyone with no science background who is looking for advice. So here’s my twopennyworth. First, a list of things you need to ignore when evaluating a treatment.
1. The sincerity of the practitioner. It’s a mistake to assume all purveyors of ineffective treatments are evil bastards out to make money of the desperate. Many, probably most,  believe honestly in what they are doing. The nutritionist who advised my mother was a charming man who did not charge her a penny - but still did her harm by ensuring her last months were spent on an inadequate and boring diet. The problem is if practitioners don’t adopt scientific methods of evalulating treatments they will convince themselves they are doing good, because some people get better anyway, and they’ll attribute the improvement to their method.
2. The professionalism of the website. Some dodgy treatments have very slick marketing. The Dore Treatment, which I regard as of dubious efficacy, had huge success when it first appeared. Its founder, Wyford Dore was a businessman who had no background in neurodevelopmental disorders but knew a great deal about marketing. He ensured that if you typed ‘dyslexia treatment’ into Google his impressive website was the first thing you’d hit.
3. Fancy-looking credentials. These can be misleading if you aren’t an expert - and sometimes even if you are. My bugbear is ‘Fellow the Royal Society of Medicine’, which sounds very impressive - similar to Fellow the Royal Society (which really is impressive).  In fact, the threshold for fellowship is pretty low, so much so that fellows are told by the RSM that they should not use FRSM on a curriculum vitae. So when you see this on someone’s list of credentials, it means the opposite of what you think: they are likely to be a charlatan. It’s also worth realising that it’s pretty easy to set up your own organisation and offer your own qualifications. I could set up the Society of Skeptical Quackbusters and offer Fellowship to anyone I choose. The letters FSSQ might look good, but carry no guarantee of anything.
4. Testimonials. There is evidence (reviewed here) that humans trust testimonials far more than facts and figures. It’s a tendency that’s hard to overcome, despite scientific training. I still find myself getting swayed if I hear someone tell me of their positive experience with some new nutritional supplement, and thinking, maybe there’s something in it. Advertisers know this: it’s one thing to say that 9 out of 10 cats prefer KittyMunch, but to make it really effective you need a cute cat going ecstatic over the food bowl. If you are deciding whether to go for a treatment you must force yourself to ignore testimonials. For a start, you don’t even know if they are genuine: anyone who regards sick and desperate people as a business opportunity is quite capable of employing actors to pose as satisfied customers. Second, you are given no information about how typical they are. You might be less impressed by the person telling you their dyslexia was cured if you knew that there were a hundred others who paid for the treatment and got no benefit. And the cancer patients who die after a miracle cure are the ones you won’t hear about.
5. Research articles. Practitioners of alternative treatments are finding that the public is getting better educated, and they may be asked about research evidence. So it’s becoming more common to find a link to ‘research’ on websites advertising treatments. The problem is that all too often this is not what it seems. This was recently illustrated by an analysis of research publications from the Burzynski clinic, which offers the opportunity to participate in expensive trials of cancer treatment. I was interested also to see the research listed on the website of FastForword, a company that markets a computerized intervention for children’s language and literacy problems. Under a long list of Foundational Research articles, they list one of my papers that fails to support their theory that phonological and auditory difficulties have common origins. More generally, the reference list contains articles that are relevant to the theory behind the intervention, but don’t necessarily support it. Few people other than me would know that. And a recent meta-analysis of randomized controlled trials of FastForword is a notable omission from the list of references provided. Overall, this website seems to exemplify a strategy that has previously been adopted in other areas such as climate change, impact of tobacco or sex differences, where you create an impression of a huge mass of scientific evidence, which can only be counteracted if painstakingly unpicked by an expert who knows the literature well enough to evaluate what’s been missed out, as well as what’s in there. It’s similar to what Ben Goldacre has termed ‘referenciness’, or the ‘Gish gallop’ technique of creationists. It’s most dangerous when employed by those who know enough about science to make it look believable. The theory behind FastForword is not unreasonable, but the evidence for it is far less compelling than the website would suggest.
So those are the things that can lull you into a false sense of acceptance. What about the red flags, warning signs that suggest you are dealing with a dodgy enterprise? None of these on its own is foolproof, but where several are present together, beware.
  1. Is there any theory behind the intervention, and if so is it deemed plausible by mainstream scientists? Don’t be impressed by sciency-sounding theories - these are often designed to mislead. Neuroscience terms are often incorporated to give superficial plausibility: I parodied this in my latest novel, with the invention of Neuropositive Nutrition, which is based on links between nutrients, the thalamus and the immune system. I suspect if I set up a website promoting it, I’d soon have customers. Unfortunately, it can be hard to sort the wheat from the chaff, but NHSChoices is good for objective, evidence-based  information. Most universities have a communications office that may be able to point you to someone who could indicate whether an intervention has any scientific credibility.  
  2. How specific is the treatment? A common feature of dodgy treatments is that they claim to work for a wide variety of conditions. Most effective treatments are rather specific in their mode of action.
  3. Does the practitioner reject conventional treatments? That’s usually a bad sign, especially if there are effective mainstream approaches.
  4. Does the practitioner embrace more than one kind of alternative treatment? I was intriguted when doing my brief research on Fellows of the Royal Society of Medicine to see how alternative interventions tend to cluster together. The same person who is offering chiropractic is often also recommended hypnotherapy, nutritional supplements and homeopathy.  Since modern medical advances have all depended on adopting a scientific stance, anyone who adopts a range of methods that don’t have scientific support is likely to be a bad bet.
  5. Are those developing the intervention cautious, and interested in doing proper trials?  Do they know what a randomised controlled trial is? If they aren’t doing them, why not? See this book for an accessible explanation of why this is important.
  6. Does it look as though those promoting the intervention are deliberately exploiting people’s gullibility by relying heavily on testimonials? Use of celebrities to promote a product is a technique used by the advertising industry to manipulate people’s judgement. It’s a red flag.
  7. Are costs reasonable?  Does the website give you any idea of how much they are, or do you have to phone up for information? (bad sign!). Are people tied in to long-term treatment/payment plans? Are you being asked to pay to take part in a clinical trial? (Very unusual and ethically dubious). Do you get a refund if it doesn’t work? If yes, read the terms and condition very carefully so you understand exactly the circumstances under which you get your money back. For instance, I’ve seen a document from the Dore organisation that promised a money-back guarantee on condition there was ‘no physiological change’. That was interpreted as change on tests of balance and eye movements. These change with age and practice, and don’t necessarily mean a treatment has worked. Failing to improve in reading did not qualify you for the refund.
  8. Can the practitioner answer the question of why mainstream medicine/education has not adopted their methods? If the answer refers to others having competing interests, be very, very suspicious. Remember, mainstream practitioners want to make people better, and anyone who can offer effective treatments is going to be more successful than someone who can’t.