Delay of Diagnosis: The Placebo Effect of Behavioral Diagnosis

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In recent years, different experts, as well as representatives of the associations of users of psychiatry, have increasingly been arguing – with ever-greater insistence – that the French system struggles with an abnormal delay in diagnosis; particularly with regards to autism, bipolar disorder, and ADHD. This opinion is often voiced in public lectures, found on websites and information leaflets and – to make it more convincing – is usually accompanied by diagrams and statistical data. A delay in diagnosing these conditions means that certain opportunities are missed and thus patients suffer. The problem allegedly mostly concerns the state-run outpatient therapy centers for children (CMPP) and adults (CMP), which often use as their reference the classic psychiatric clinic, the French CFTMEA classification, and psychoanalytic theory.

Although they are not always named explicitly, it is precisely these references that are accused of causing the diagnostic lag. The argument is often supported using patient and parent testimonials; sometimes the accusations are more straightforward, targeting the “psychoanalytic lobby” directly. I would like to examine the strength of this argument by taking ADHD as an example.

ADHD is a mental disorder which was first included in the third version of the DSM. It replaced the old categories of instability, hyperkinesia, and hyperactivity. It emphasizes quality of attention – primarily attention that can be associated with hyperactivity and impulsivity.

There are several reasons for this focus on attention (Though I am only going to look at those that I find most important): Attention as a pedagogical value (student attention); As an economical value (consumer and client attention); As it allows us to expand the disorder to include girls, teenagers and adults who are less concerned by hyperkinesia; As it is studied by modern neuropsychology and, most importantly, As it responds to methylphenidate (Ritalin, Quasym, Concerta) or, in some countries, Vyvanse.

The concept of ADHD has not been given any scientific proof and despite the hundreds of millions of dollars spent on research, its proponents are not ashamed to say “we have found nothing, but there is a consensus about the delay in the maturation of certain areas of the brain.” In other words, they produce laughably general claims, which are simply ideological and completely lack scientific rigor. Although the diagnosis of ADHD is not based on any scientific foundations, it has been presented as a neurodevelopmental and often simply neurological disorder. Hypotheses presented as reality.

And yet, why only neurodevelopmental, rather than psycho-developmental, educational-developmental or context-developmental? It is probably to “naturalize” the disorder; to suggest that everything has to do with the brain, and is therefore likely to respond to drugs as well as pedagogical and psychological support measures. The latter two are nevertheless seen as secondary – or at least increasingly so in everyday practice – despite all the safety precautions and official claims.

But allow me to return to the question of diagnosis.

What happens when parents are told their child has ADHD? Generally – but of course not always – the first reaction is relief (though I see many parents who later become disappointed or worried), especially if prior to this they were sent from one practitioner to another without receiving any clear information or if the previous form of care did not suit them – in other words, if the transference of therapeutic alliance failed to emerge. They are now seen by professionals — who seem to work in a scientific manner, using assessment tests, neuropsychological exams or even brain imaging — and who are therefore perceived as competent and up-to-speed.

Finally, as a result of being told which “illness” their child suffers from, the parents understand that they are not “bad parents” but only had been seen by the “wrong people,” which is what caused the diagnostic delay. This – somewhat simplified – is what happens in most cases.

How should we understand this feeling of relief?

On the one hand, the diagnosis acknowledges the suffering of both the child and the parents. However, it also objectifies it, thereby relieving any feelings of guilt. In addition, it produces a placebo effect – our child can be helped by science – creating an expectation and a therapeutic alliance. Nevertheless, this placebo effect of the diagnosis would not last very long if it were not for synergy with a drug that “works”: methylphenidate. However, this medication is simply a legal and controlled drug; it is not a remedy in the sense of curing a disorder. Strictly speaking, we should understand it as a kind of comfort solution, more like a study drug. Yet for a third of the children diagnosed with ADHD, its short-term efficacy is undeniable.

This means that what ADHD proponents present as validation of a diagnosis of a real and treatable disorder is in fact a placebo effect caused by an ostensibly scientific label, which exists in synergy with an efficient, legal drug.

The ADHD label produces this placebo effect because its diagnosis is based on behavior that in reality could be observed by anyone. What is observed sounds “scientific”; it is easily understandable and highly obvious. When the diagnosis is turned into an action plan, we forget that there is nothing scientific about it and that its evaluation is purely subjective and clinical; that it creates a great many false positives, and that a drug prescribed in half of the cases indeed does have serious side effects.

ADHD works — as a social construction. Telling parents that their child suffers from a neurosis would either mean nothing to them or, worse, they would feel incriminated — which would prevent the transference relationship from forming, with no hope of a placebo effect. The behavioral diagnosis clearly has an advantage here, especially because what today’s society increasingly demands from child psychiatry is to simply sedate certain types of behavior. To deny this dogmatically, as some would like to do, changes nothing and instead prevents us from reacting appropriately; for example, creating the impression that we wish to blame the parents who have agreed to their children being medicated.

When we speak about a delay in diagnosis, the diagnosis in question is a behavioral diagnosis, with its placebo effect and its legally sanctioned drug use.

But, after all, what should our answer be?

In his 1979 Closing remarks, published in Lettres de l’Ecole 25, Lacan said:

“So how does it happen that through the operation of the signifier, there are some people who are indeed cured? Because that is precisely what happens. It is a fact that some people do get better. Freud emphasized that the analyst should not be possessed by a desire to cure; but it is a reality that there are people who indeed are cured, cured of their neurosis or even perversion. How is it possible?

“Despite all that I may have said about it on different occasions, I have no idea. It is a question of trickery. How do we whisper to a subject who comes for analysis something that has the effect of curing him is a question of experience, which involves what I have called the subject supposed to know. A supposed subject is a doubling. A subject supposed to know is someone who knows; he knows the trick, because I have on occasion spoken about tricking; he knows the trick, the way one cures a neurosis.”

To conclude, we could say that the advocates of ADHD and of the biological-behavioral current in psychiatry have found their trick. It is their own kind of trickery, but as opposed to Lacan’s approach, they do not attempt to theorize it, but instead simply to deny it. The doubling that happens here is of the “subject supposed to know” that the trick – the drug – works.

22 COMMENTS

  1. Interesting article. I recently came across the following articles that suggest teaching mindfulness-based practices to parents (of children with behavior issues) significantly reduces the parents’ stress levels, and this in turn brings about significant changes in the behavior of their children.

    Singh,N. N., Singh,A.N., Lancioni, G. E., Singh, J.,Winton, A. S.W.,& Adkins, A. D. (2010). Mindfulness training for parents and their
    children with ADHD increases the children’s compliance. Journal of Child and Family Studies, 19, 157–166.

    Neece, C. L. (2014). Mindfulness-based stress reduction for parents of young children with developmental delays: applications for parental mental health and child behavior. Journal of Applied Research in Intellectual Disability, 27, 174–186.

    Singh,N. N., Lancioni, G. E., et a. (2014). Mindfulness-Based Positive Behavior Support (MBPBS) for Mothers of Adolescents with Autism Spectrum Disorder: Effects on Adolescents’ Behavior and Parental Stress. Mindfulness, 5, 646-657.

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  2. Patrick,
    I like your article and got some useful things out of it. In my opinion ADHD is a not a valid reliable separable entity, but rather an illusory constellation of possible behaviors/ways of thinking for which there is no one etiology.

    For me the checklist of symptoms that is called ADHD is like looking in the sky and seeing the group of stars Sagittarius (the constellation); upon closer inspection, there is no Sagittarius really there; the stars in it are no more related to each other than they are to the other stars nearby that are not part of that supposed constellation. The only reason people think those stars are Sagittarius is because they have been told that and project this image onto those particular stars. The same thing happens with the cluster of behavioral problems that get labeled ADHD; they aren’t really cleanly discrete and separate from other degrees and kinds of behavioral issues.

    The British Psychological Society did a study in 2001 reporting that statistical methods show that the symptoms of one supposed DSM disorder are often no more related to one another – in terms of their frequency in a person who supposedly “has” that disorder – than they are to symptoms of other supposed disorders that the person supposedly does not have but nevertheless evidences. Paris Williams discussed this study in his book Rethinking Madness.

    Your writing reminds me a bit of Phil Hickey (another blogger on MIA) and Robert Berezin::

    http://www.madinamerica.com/2015/09/the-inherent-unreliability-of-the-adhd-label/

    http://www.madinamerica.com/2015/03/no-no-thing-adhd/

    I am a teacher of young children with my work and encounter a number of children whose parents think they have “ADHD”, and this is why they cannot concentrate with me in the classes. I regard this as bullshit, but of course I don’t say that to the parents. However, I think that I can form a better relationship with the children because I view them as individuals with problems relating to their family and external environment, not as littles people with a brain disease needing to be drugged.

    I am glad you are part of an organization called STOP DSM. I have a passionate hatred for the DSM and the ICD and wish they would both be abolished. I apologize as an American that our idiot psychiatrists have been trying to force these stupid labels down your throats and the throats of every other country on Earth with the money to pay for their drugs and the foolishness to believe their unscientific scams. American psychiatrists need a big dose of humility. As I have been saying in other posts, I am trying to invent a drug called Humilodol to give to our psychiatrists: It will make them more humble and stops them believing in the illusory diseases in the DSM. And if they do not want to take it, I will tell them they are unaware that they have an illness (anosognosia) and force them to take it anyway. The problem is that so far I cannot fake two successful trials of Humilodol actually having this effect. But when I do, watch out! Things will be much better 🙂

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      • Thank you Someone Else. It’s very upsetting to me that 88 clinical trials of Humilodol have failed so far. The molecular biologists working for me are having a hell of a time figuring out the biological cause of arrogance and creating a new drug to target this scourge. But to get Humilodol approved with the FDA I only have to make 2 trials work, and then I can hide all the other negative trials in the file drawer. And when it is finally approved I can get E. Fulley Torrey and the Treatment Advocacy Network to promote Humilodol as an Assisted-Outpatient treatment for psychiatrists who have anosognosia about their illnesses, and incorporate it into the Murphy Bill. So stay tuned.

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        • Everything I say is original, Oldhead.

          🙂 Seriously, I don’t remember reading about it elsewhere, and I used it first in an article on my website BPDTransformation. I was thinking one day about things that seem to have an illusory order but don’t in nature, and the groupings of stars called constellations seem like a good example where humans project order onto randomness or chaos. To me the analogy applies to almost all the labels in the DSM, including so-called Borderline Personality Disorder.

          But, I’m sure that some others have independently used this analogy before me, as it seems like something many people would think of.

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  3. Patrick,

    I appreciate the blog, in that you do seem to point out the psychological theology behind today’s psychiatrist’s DSM, et al. Today’s DSM disorders are essentially psychological ways to “trick” people into medicating their children, or themselves.

    I’d like to point out, that I doubt most parents go to a “doctor,” to be “tricked” into medicating their child. And at least in the US, we are brainwashed into trusting in the medical community. Rather than being told the seeming truth, that the medical community are still apparently a bunch of charlatans, trying to “trick” us into taking their pharmaceutical “cures,” for the profit of the doctors and the drug companies.

    They call it “evidence based medicine” here. The sick thing is, “evidence based medicine,” apparently the pharmaceutical industry’s most recent marketing ploy, seemingly has nothing actually to do with “evidenced based medicine.” It has more to do with the medical and pharmaceutical industries collectively turning themselves into the number one cause of death in my country.

    I hope the medical community wakes up, since they are technically the ones their own professional organizations are seemingly throwing under the bus, from a moral perspective. Thanks for helping to point this out.

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  4. Why don’t people view ADHD in the same way they view autism, in terms of being “real”? I think they should. I see this as a backlash related to the overdrugging of this group of kids. (autism “irritability” is drugged too, but that isn’t pushed quite as hard with ADHD)

    To be clear, I am not talking about the ADHD label that gets slapped on something like 20% of all boys. I am talking about people like my brother who was diagnosed with it in the early 80s (DSM 3 days). In him impulsiveness has always been pretty noticeably (as in he did things like buy 4 cars in the course of the year in his early 20s when he didn’t have the money to do so, and no, this wasn’t a manic response to stimulants since he barely had exposure to them), he had a lot of social problems growing up due to his non stop talking/blurting things out nature (and he was bullied pretty badly), and he while he has matured, these traits are still very much there today. He does have evidence of neurodevelopmental issues too- he didn’t talk until he was 2.5 (they actually thought he might be autistic…until he finally talked and never stopped), and still has physical problems with coordination and fine motor skills today (these are less commonly discussed aspects of ADHD, though not part of the DSM criteria). There are a lot of parallels with me, though in a little different, more subtle ways ,as is usually the case with females .

    I guess what I’m saying is that I do wish there was recognition of ADHD as more than a social construct…I haven’t seen many people talk about autism like this. There has been discussion about seeing autism in neutral terms rather than a disease/problem and I would argue that’s how ADHD should be seen- as a difference, with advantages (creativity and being blunt can come in handy, if used well) and some disadvantages that would benefit from recognition and (non-drug) support.

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    • Why should ADHD be seen as valid when there is no evidence it actually exists as a separable entity?

      In other words, why should we believe that some people “have ADHD” and others don’t have “it” based simply on subjective observations of behavior and self-reports? That’s not real science. There are no biomarkers or known causes of an illness called ADHD.

      Telling stories about individuals who have certain problems is fine – their problems are real and deserve understanding and help. But nothing you said about your brother in any way proves that ADHD exists as a condition apart from or separable from other behavioral-cognitive problems.

      I see many children who’ve been labeled with ADHD and see no evidence whatsoever that there is some magical line at which X child becomes ADHD and Y child is not ADHD. Rather, I would say certain children have more or less problems with attention, focus, and irritability at a given time in relation to themselves and others, past and present. I don’t see the need to invent a fictional disease.

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    • I think what you are really talking about is that some people may actually have some sort of neurological problem that makes it difficult for them to control their impulsivity. I would not deny that this may be the case. However, the diagnosis of ADHD is not made based on any kind of neurological measurements or observations, and in fact, lumping all these people who have similar behavior together has the effect of OBSCURING the rare but probably extant cases where there really IS something wrong neurologically. Let’s say that your brother had some kind of, I don’t know, benign tumor in his frontal lobe. He goes to the doctor. Doctor says, “Oh, this is ADHD, seen it a hundred times. Give him some Ritalin, he’ll be fine.” He did the same thing with the kid who had sleep apnea, the one whose iron was low, the one whose father beats up his mother but he’s never told anyone, and the one who is really smart and bored to death with his dull teacher and classroom. How will he ever detect the tumor, or the low iron, or the domestic abuse, or the sleep problems if he can just lazily lump all these things together and call it “ADHD?” It gives the adults an “out” from admitting they don’t know what’s going on and actually doing some specific research on the causes of this particular person’s difficulties.

      There may very well be neurological problems that cause someone to have difficulties with attention, but if they exist, they should be identified and called what they are rather than lumping them into some catch-all garbage can diagnosis like “ADHD.” Anyone can make such a diagnosis by simply listing off characteristics of an annoying type of person and calling it a disease. In fact, the DSM has done that in at least two other cases, “Oppositional Defiant Disorder (characterized by being unwilling to be bossed around by authorities) and Intermittent Explosive Disorder (characterized by having occasional outbursts or temper tantrums). There is, of course, no reason in the world to imagine that ALL people who have temper tantrums or ALL people who don’t like being told what to do have the same problem, or indeed have anything physiologically wrong with them at all. It’s just lazy diagnosis, made easy by the deceptive idea that the DSM diagnoses are somehow linked to some kind of scientific research. Once you realize they’re voted on in committee, you can see that the whole enterprise is pretty shady and not worth much.

      If someone has something really wrong with their brain, we should look at their brain and find out what it is. But assuming that some annoying behavior is due to a brain malfunction is dangerous, and the epidemic of drugging you see is both the purpose and the predictable result of such delusional thinking.

      —- Steve

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  7. Hey, I think most psychiatric conditions are a normal response to abnormal environment. You don’t have to convince me that biological perspectives are mostly bad. But in developmental disorders, SOMETIMES there are neurologic contributors. For example, there is an association between being born preterm and BOTH ADHD and autistic spectrum in kids. In those cases, that suggests a biologic basis. Whenever I read these articles about ADHD, I do wonder why ADHD is generally considered fake here, but that’s generally not what people say about the autistic spectrum. Why did people get offended by BPDs remarks last month that autism is related to bad parenting, but it would it would be okay to say the same thing about ADHD? That’s the core of what I’m asking. I’m not seeing a difference between the validity of autism spectrum and ADHD.

    Oldhead, to repeat, I have a lot of the same issues myself (I just have spent most of my life without a label since differences in girls are usually less obvious and prone to labeling). I was not the coolest kid on the block by any means, and actually my brother is definitely better off in many respects, today.

    One of the benefits of having a little extra help (not drugs, let me be very clear about that) was a group therapy that gave him friends when he otherwise wouldn’t have had any. And 2 of them are still his good friends today. Do you think he would have been better off with no friends for a few years growing up , in prime social development years? I wouldn’t have minded that myself.

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    • I don’t believe it is settled that autistic states are caused primarily or only by biology or genes. I haven’t seen convincing data supporting that; rather, it is usually admitted that the etiology of autism is a mystery. There is another approach arguing that some autistic states are in principle reversible through psychological and social means, for example in these books:

      http://www.amazon.com/Arctic-Spring-Potential-Growth-Psychosis/dp/1855753146/

      http://www.amazon.ca/Frances-Tustin-Borderlands-Psychosis-Psychotherapy-ebook/dp/B000OI0VLQ/

      http://www.amazon.ca/Working-Organizing-Experience-Transforming-Psychotic/dp/B00ZLW73I4/

      These books are quite fascinating and hopeful, by the way. Given that no clear biological cause of autism has been discovered, it would benefit us to look at other possible means of approaching and helping people with these problems, including psychological and social ones.

      I do not agree that being born preterm suggests a biological cause of autistic states or problems with attention (“ADHD”). It is merely correlational, and it could simply mean that those children are born with slightly less well developed brains / nervous systems and thus are on average more vulnerable to environmental stress, all else being equal, with environmental stress still being the main contributor and a prerequisite for the development of some autistic states or (especially) attention deficit. Perhaps we are saying a similar thing.

      It is possible there are some autistic states that are caused by something going differently biologically; that may be possible. I have a sense of that being a possibility much more from working with autistic children than from ones labeled ADHD. There is something much more “different” and more distant about children labeled autistic. But I still don’t know it’s a biological cause.

      And again, I am asserting that there is no evidence that behavioral problems labeled ADHD actually constitute a distinct illness or condition that can be cut off at the joints, so to speak, and spoken about as a reliable entity. I don’t believe ADHD exists in that way. I experience the supposedly ADHD children I work with as very variable along a continuum of problems in concentrating, and some of them are or become more “normal” or healthy than children not labeled ADHD.

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      • Also, it is not that serious attention problems are being considered fake. Opponents of ADHD are not dismissive of people’s real problems. What is being contested is that serious attention problems or other symptoms on the list of ADHD symptoms constitute a valid or reliable diagnosis/illness, and also that there is any known biological cause of said fictional “illness”.

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    • I think you raise some important questions regarding the differences that get labeled ADHD and those that get labeled as autism spectrum disorders. Some people conceptualize some of the difficulties with learning and attention that get labeled ADHD as being one end of a long and varied “spectrum” of conditions that includes what gets called autism. The use of alcohol, crack cocaine, thalidomide and many other neurotoxins have been shown to cause neurological damage to fetuses in pregnancy. This research is solid. These neurotoxins have also been shown to cause attention difficulties and autistic like behaviors in experimental animals as well. While a warm and caring environment and capable, loving, attached parenting helps any child reach his/her potential and have a more fulfilled and well adjusted life, some developmental problems are clearly caused by physical harm.

      I don’t think this negates all the great points made on this blog about the harm of the medical model and the biased science sponsored by Big Pharma or other powerful and corrupting influences. The fact that physical harm may cause certain traits or challenges, such as behaviors that get labeled autism also does not deny how important a loving attachment to caring parents is for children or how much peer support, hearing voices groups, respites, good quality humanistic therapy etc etc can help us grow through and heal psychic pain. Beyond this, physical causes of certain developmental difficulties does not minimize the harm that trauma and neglect can also inflict on people. We are both nature and nurture and a complex interaction of the two.

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    • Do you think he would have been better off with no friends for a few years growing up , in prime social development years?

      No, and I don’t think we have a serious argument here. Too bad people have to find friends under the auspices of therapy however.

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