I encountered the above question a few months ago on an internet forum. The forum is big on promoting all sorts of alternative therapies for cerebral palsy, ASD and the like, containing numerous parent testimonials on how much HBOT, Stem Cell Therapy, the Feldenkrais method, diets and the ilk helped their child’s progress. The general message of the testimonials is “It worked for us, you should try it, too”, and “you don’t know until you try it” and it gets a ton of cheers by fellow parents for all the great encouragement.
Parents exchanging information is certainly a good thing; however, information about certain therapies being nothing else but well-advertised woo-woo isn’t always welcome on such forums, whether they come from a fellow parent or no. Criticism of therapies isn’t frowned upon though if it is presented in the form “well, it didn’t work for us, but it might work for others”, with “we’re all different” and so on, suggesting that it is unknown factors that make it a mystery why certain therapies work for some children and not for others. There is, however no much mystery here, but before we can answer this question, we have to look into what it actually means that a therapy “works”.
Asking the question of why the therapies work in some cases and not in others contains the presumption that the therapies do indeed work in some cases, we just don’t know why. This presumption is supported only by the testimonials, the sometimes detailed descriptions of the child before and after the therapy. The difference between “before” and “after” appears to be very convincing for the readers, who are then appropriately encouraged to try the therapy with their own kid without further questioning (not without further “research”; they may read 100s more of similar forums with identical content and may read the therapy’s various promoters’ websites in countless numbers; what they don’t look up is factual data and the realities of the human body).
Most people (from all walks of life, whether parents or not, regardless of how highly paid or intelligent they are) don’t know where to find research data, and if they accidently encounter it, they don’t know how to read it. This is not a sign of stupidity; most people simply don’t need such stuff and they probably have better things to do than going through medical journals and paying for articles most of which are crap anyway. But it is because of the average person’s total non-involvement in finding data first-hand that most parents never get to find out that this or that therapy has been, flat out, without a doubt proven to be doing nothing by competent scientists who designed their study to rule out biases (HBOT), or the therapy uses new science and technology involving potentially dangerous substances the safety of which hasn’t been established and there are doubts because they make animals sick (stem cell), or the therapy in question is benign, but simply a renamed, remarketed, often watered-down version of an already existing therapy (Anat Baniel method). They don’t get to find these out, therefore they rely on fellow parents’ testimonials.
Why shouldn’t we rely on testimonials?
If quack therapies don’t work, why do so many parents report that they do? Surely, nobody in their right mind would think that those parents are lying, or they’re trying to deceive others, or that they’re stupid and they don’t know what they see. We have a good reason to think that all those parents know their children well and they’re perfectly capable to observe their child’s abilities before and after a therapy event or a series of events. They see progress because most of the time there is progress. The child couldn’t say ‘daddy’ before the hyperbaric oxygen therapy was started, and now, 3 months and several sessions later, he can say ‘daddy. The child could keep his sitting balance independently for a few seconds before the therapy started, but has shown progress after each session and now he can sit for a minute. The results are clear, they’re even measurable!
However, none of these results show that the therapy worked, regardless of how spectacular they are. Children—all kinds of children, disabled or not—develop, learn and progress all the time. If we observe any child at a point of time and observe the same child later, there will be progress and WE WILL SEE THE PROGRESS, whether we subjected the child to therapies or no. Sometimes children seem to improve a tremendous amount in a short time, and unfortunately a lot of parents attribute the progress to the latest therapy they did, instead of the perfectly reasonable explanation of the progress: children observe, experience, participate, see, listen, move, play—they do things all children do, things that everybody does, things that are behind all learning of all human beings.
Simply because one thing (progress) happens after another (therapy), we have NO WAY TO KNOW that the second thing was caused by the first. Unrelated events follow each other all the time. Just by observing that B followed A (however correct that observation is) we can’t tell for sure that there is a causal relationship between the two. If events that followed each other were always in a causal relationship, then I could claim that the sun sets every evening because I drink a cup of tea every evening!
In order to establish a causal relationship between A and B we need a controlled study. There is no other way of knowing so far, regardless of how smart and intelligent we are. In a controlled study there is an experimental group and a control group, which are as identical as they can be except for one factor: the experimental group does get the treatment and the control group doesn’t. What we must observe at the end is the difference between the two groups, because progress, however great, doesn’t prove the effectiveness of the treatment if both groups progressed equally. If the treatment group shows better progress than the control group, then we know that the treatment is effective. (There is a lot more to know about trials, but this blog is not the place to gather that knowledge!)
If we choose to read and understand the results of such trials instead of reading the 100th testimonial, we come unimaginably closer to bringing the right decisions for our children and family.
There are, of course, no controlled trials for everything (there is in the case of HBOT), but we do have other means to see through products and services that offer miraculous recovery. If a therapy is based on the magnetic properties of human blood, we know that it’s bogus because blood isn’t magnetic. If a therapy is based on the awakening of dead nerve cells, we know we’re being set up because death is irreversible. If the therapy is based on injected substances that make lab rats sick, we have a very, very good reason to keep our children away from such therapy.
Our question “why do some therapies work so well for some children and not for others?” is identical to the question “why are some planets in our solar system flat while others are round?” Both of these questions presume a statement as true—some planets are flat, and the therapies do work for some children—without even considering that the statement might not be true in the first place.
The biggest problem with all the countless bogus therapies is not that they don’t work; the damage is caused by the wasted time, energy, and resources. If we spend our money on a course of HBOT instead of buying an adapted bicycle for our child with cerebral palsy, we deprive our child from a superb physical activity, fun and quality time spent together. If we spend our days driving back and forth from one therapy to the other, we deprive our child from having a healthy and predictable daily/weekly routine, consisting of plenty of playtime and plenty of time and energy allocated to allowing the child to participate in their own care. If we hang on to false promises and false hope, we won’t find the real hope—every human being alive, however disabled, is capable of learning—for a long, long, long time. The upbringing we provide will absolutely have a huge role in the child's development, but upbringing has nothing to do with medicine, quack or scientific.
The parent who finds that his son has improved after “every therapy under the sun”, may be correct in his observation, but is not correct in his assumption that his son’s improvements were caused by the therapies. One could wonder what if the child, who has such a great learning potential that he continuously improves despite being dragged though untold amounts of various woo-woo, was allowed to spend all that time playing, or god forbid, physically participating in play activities with other children? The boy would most probably have improved a lot more without the therapies.
Be careful with parents’ internet discussion boards. I know how much it helps just to get your story out there and share your thoughts and feelings with many others who are going through the same as you are. I know how relieving it is when someone, somewhere UNDERSTANDS. But you must be aware that parents of disabled children are not more likely to possess critical thinking skills than anybody else, which means most of them do not know of the confusion about correlation/causation. You can be pretty much assured that most testimonials you read on these sites are a result of a parents not realizing that their child’s progress is normal, almost inevitable, and not the result of woo-woo.
Please understand your responsibility if you have a website, blog, magazine where you allow promotion of quack therapies. If you claim that your site is not a medical journal and therefore it doesn’t have to be accurate, and that you’re just trying to help by allowing free flow of information and encouragement and so on, please consider that your site is used by desperate and vulnerable people and they might take seriously what they read. The “information” on your site may affect parents’ decisions and affect the lives of their families and especially their disabled children in a very negative way. While free discussion should always be allowed, you can always balance out the one-way effect of a site like that with providing links to sources where the reality about these therapies is revealed.
Finally, the above photo shows India actively participating in a family dinner, feeding herself and chatting away with the guests. This is a great achievement for her, and it’s not a result of medical, quack-therapeutical or magical interventions, it is simply the result of good old teaching and learning. We taught her to do this by organizing our day in a way so that there’s plenty of time for dinner, we set her up in a way so that she can sit with us, we asked her and expected her to hold her own spoon, we helped her manually when she got stuck (without taking the spoon out of her hand), cheered her when she took bites, and we did this EVERY DAY. It took time and effort to do all this, because you can feed India a whole plate of food without her participation while she’s sitting in her stroller in less than 20 minutes, while the conductive upbringing version of dinner used to take well over an hour. The stroller version doesn’t contain any learning opportunities, while the conductive version contains nothing else but learning opportunities. There is no therapy than can compete with that!