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Placebo effect in autism

PLACEBO EFFECT

By happy coincidence I have just read a very interesting article on the placebo effect in New Scientist and listened to  two radio broadcasts on the same subject from Ben Goldacre. There are also discussions of both broadcasts here and here on Ben’s Badscience blog.

Placebo effect is often used disparagingly with reference to the anecdotal evidence for alternative and complementary therapies. There is a common misconception that the placebo effect is not real. Patients are deluding themselves. What they really need is a dose of allopathic medicine with those expensive molecules created by big pharma preciely targeting the locus of the disease in the body and eliminating it.

Both the article and the broadcasts challenge that idea. As Ben says in one of the broadcasts, if we support evidence based medicine we have to admit that according to the evidence the placebo effect is real. He gives some striking examples:

  • Patients improving with their pacemakers switched off.
  • Branded painkillers proving more effective than unbranded ones.
  • Placebo proving as effective as some medications for irritable bowel syndrome.
  • People who knew they were on placebo reporting benefits.
  • Some people even managed to experience negative side effects of a drug while on placebo.

Ben makes the point that it is not the pink pill (though pink placebo pills do work differently to blue placebo pills) or the faux acupuncture or the placebo pain control cream that is working. Within the total context - the white coat, stethoscope, diplomas on the wall, intangibles like bedside manner etc - the pill may seem to be effective. But the placebo effect is more to do with the total doctor/patient relationship. The placebo effect works with real medicines as well as placebos. Patients who knew they were receiving morphine reported less pain than patients receiving the same dose without being told.

The challenge now is to fully understand the complexities of the placebo effect and use it effectively and ethically to improve patient care and patient outcomes. We may have something to learn from the alternative therapists. The ones who truly believe in what they are doing are probably very good at making full use of the placebo effect even if they do not fully understand it.

OUR EXPERIENCE

We experienced this with a homeopath and a practitioner of the Bowen Technique, a light touch massage. At the time we were having a hard time. Our son was getting nothing from health or education services and was severely stressed, as were we all. The benefits we got from our sessions were simple. They listened. They were sympathetic. They were gentle with us. They were such nice people. They really wanted to help us. They really believed they could help us and we wanted to believe. I tried some of the therapy myself but there was something not quite right about the guy doing the massage. We developed a sense of unease and the placebo effect diminished.

When I discussed the apparent benefits with our son’s paediatric psychiatrist he dismissed it airily as the power of suggestion. When my son had a meltdown in his office on his first visit and had to be physically restrained I could not help wishing that this psychiatrist could calm somebody with the power of suggestion.

AUTISM AND PLACEBO 

The placebo effect does not mean that alternative therapies work in the sense that their theoretical underpinnings are correct. But it is such a powerful effect that it may be working through the therapy in some cases even if the therapy per se does not work.  If we accept that one of the major causes of challenging behaviour in autistic children is the mismatch between their social understanding and the expectations of family, friends or school then an obvious way to help them is to revise our expectations. Electing for any type of therapy effectively does that.

BEHAVIOURAL EXAMPLE

This has happened many times in my career. A pupil is acting inappropriately. Attempts to control the behaviour are not working. We stop and carry out a functional behavioural analysis. We think we have stopped intervening while we collect baseline data. But from the child’s point of view we have changed our intervention. And so his behaviour changes. And we have changed ourselves as well. If I am charting incidents I feel in control. I am no longer challenged by the situation.  I no longer feel challenged by the child. I no longer provoke the behaviour I am seeking to control.

BIOMEDICAL EXAMPLE

I go to my alternative practitioner who tells me my child has gut problems that are causing his behaviour. We need a special diet and some supplements. It is not his fault. It is my fault for feeding him the wrong stuff. So I stop blaming him for his behaviour. I cut the kid some slack while waiting for the diet to kick in. I change and my child responds. I credit the diet and the doctor who prescribed it.

I am not sure if those two examples are strictly speaking the placebo effect. But they fit the general pattern of a total context having the power to explain what is happening more fully than the obvious recourse to the pink pill, the chart or the change of diet.

Ben’s second programme concludes with a doctor arguing that the power of placebo works best in those conditions were there is not a specific disease pathway amenable to a pharmaceutical magic bullet. Autism is very much like that. Yet the alternative therapists who infest our community claim precisely the opposite. They believe they know the precise biomedical pathways that lead to autistic behaviour and claim to have targeted interventions for each one. Mainstream medicine cannot claim much in the way of moral high ground in relation to autism. But its acknowledged ignorance and impotence in the face of this enigmatic condition is surely preferable to such hubris?

 

August 26th, 2008 Posted by Mike | Quackery, biomedical interventions, science | 6 comments

6 Responses to “Placebo effect in autism”

  1. They are good illustrations of whatever this phenomenon is. I particularly like your thoughts on the putative mechanism of improvement for the diet as that is something that puzzles me.

    All too often placebo has the inappropriate image of something that involves props and manipulation of the gullible. George Bernard Shaw embodied this in the character of Sir Ralph Bloomfield Bonington (B.B.) in The Doctor’s Dilemma:

    He has a most musical voice…He radiates an enormous self-satisfaction, cheering, reassuring, healing by the mere incompatibility of disease or anxiety with his welcome presence. Even broken bones, it is said, have been known to unite at the sound of his voice: he is a born healer, as independent of mere treatment and skill as any Christian scientist.

    B.B.s magic bullet was ’stimulating phagocytes’. Faced with a patient with TB for whom his treatment seems to have exacerbated the progress of the disease, B.B. declares:

    if I didnt know as a matter of scientific fact that I’d been stimulating the phagocytes, I should say I’d been stimulating the other things. What is the explanation of it, Sir Patrick? How do you account for it, Ridgeon? Have we over- stimulated the phagocytes? Have they not only eaten up the bacilli, but attacked and destroyed the red corpuscles as well? a possibility suggested by the patient’s pallor. Nay, have they finally begun to prey on the lungs themselves? Or on one another?

    I think about that whenever I read about a ‘healing crisis’ or see someone arguing that removing one set of allergens has unmasked a set of previously concealed allergies that must now be deal with (expensively and with ever more restrictions).

    Ben’s second programme concludes with a doctor arguing that the power of placebo works best in those conditions were there is not a specific disease pathway amenable to a pharmaceutical magic bullet.

    Mike, as far as I can tell, and I am judging by the links that I found on HolfordWatch, you are referring to Prof Kaptchuk but he is a doctor of Oriental Medicine, rather than a medical doctor. Not that that detracts from his comments.

  2. Thanks, Mike, for writing on this topic. In my view, it is one of the fundamental issues that people need to get their arms around prior to deciding the real efficacy of treatments/interventions for autism.
    And it is the most compelling reason that we must adhere to the scientific method when analyzing such treatments.

  3. Mary

    Thanks for the literary reference. The sad fact is that Shaw’s parody would pass for the real thing among today’s autism biomeddlers.

    Steve,

    I totally agree. I think that the crucial time is just after diagnosis. Timely support and positive suggestions like “This is what you can do to help your child,” versus “There is no cure but you can apply for services.” Which one is going to empower parents and which one will drive them to embrace quackery?

  4. Just getting a diagnoses can help. When an MD said ‘autism’, my family stopped saying ‘bratty kid and bad mommy’ and cut us some slack. The counsellor we were given had a child with Asperger’s, and was far more help just as a parent who had been through this than the psychiatrists who hadn’t.

  5. Great post, Mike.

    Although I think your examples might broadly fall under the heading of “placebo effect”, I think they might more properly be a form of the Hawthorne effect. The Hawthorne effect refers to a series of experiments that took place in a factory outside of Chicago, Illinois, USA, in the 1950’s. They made telephones there. When experimenters changed environmental conditions (such as increased the lighting or gave the workers more space) the output increased. Similarly, when they decreased the lighting or rearranged the space and gave them less space (but told them they were doing this for their benefit) the output increased. After a period of time the output returned to normal.

    I also think your observation that specific stimuli and response arcs are being broken is important, too.

    Joe

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