Evidently, Dr. Cannell has decided to take his case to the "people" by sending out emails.
Cannell is by no means the first person to see an apparent association between the rise in autism diagnoses and something which has also been on the rise in the past twenty years. Among other things, we've heard about an apparent connection between autism and an increase in... cable television access, certain types of pet shampoos, airplane exhaust, electromagnetic fields, and many, many other issues. I myself have received calls from people linking autism to an increase in strep in the birth canal, ultraviolet radiation, and lyme disease.
Any one of these theories could hold water. Or not. And many of the theorists have been ridiculed for their determination to prove their unpromising theory correct. Ridicule breeds anger, and anger leads to conspiracy theories and backlash - responses like the one I just received. Here's how Cannell ends his email:
If the vitamin D theory is right, the raison d’etre for the billion or so dollars in autism grants, institutions, and careers in autism research will become defunct almost overnight. More frightening for the medical profession, the theory means the current plague of autism is an unprecedented iatrogenic epidemic, caused by medical advice for pregnant women and young children to entirely avoid the sun. What will happen if the wrath of parents of autistic children turns from vaccine manufacturers to the medical profession? How long will it take for the trial lawyers to smell blood in the water?My point here is not to suggest that Cannell does or does not have a scientific leg to stand on. I don't have enough information to even guess - and certainly he has published papers and been cited frequently. My point, rather, is to suggest that parents are being bombarded from all sides with theorists who turn to parents themselves for support, engagement, and even funding.
If we believe in every one of these theories, based on the notion that "he COULD be right," we will find ourselves completely over our heads in preventive measures, therapies, and expenses. In fact, in order to avoid all of the causes of autism now on the table, we'd need to live far from civilization, avoiding television, cell phones, and many forms of modern medicine. Yet it's all these new technologies that provide us with access to therapies, support groups, and critical research and information.
Bottom line, while people like Dr. Cannell may truly believe they have an important piece of information to share - and feel strongly that they should share it - I can't support the idea that it should be shared, first, with lay parents. Until and unless there are at least several independent, double-blind research studies completed, parents have no tools with which to judge the validity of such claims. Yet their intense connection with the issue means that they often feel they must take every possible claim seriously.
To those researchers out there who feel they may have the answer to what causes, prevents, or cures autism - please, before you take your case to the autism parents of the world, have independent, replicated studies in hand. Don't link your articles, blogs and emails to your own work, to articles in Medical Hypotheses (a medical journal which includes hypotheses but no peer-reviewed studies), or to studies which have only a peripheral relationship to your theory - but instead show us that you are in good company in your specific theories and findings.
If there is something in Dr. X's theory - and there may well be - then surely someone besides Dr. X (or his brother or son) should be able to get the same results with the same tools. If so, please do let us know. Until then, please continue your research.
Younger paternal age would help prevent non-familial autism
I like to give people the benefit of the doubt and say that they mean well. People want to spread the “good news” that they have to believe in. I think it is the “Lorenzo’s Oil” effect. His parents, though they had the answer to arresting the disease (or were hot on the trail at the time), were ridiculed when neither the medical establishment or the parents’ association wanted them to say anything about it. I acknowledge that autism is different from ALS in both its rate of occurance and its severity (leads to death within 2 years) so the issues are not exact parallels. But I guess, my point is that we always do want to be on the lookout for “the cure” and often would like to be the first to have it.
That being said, I agree with Lisa Jo that there needs to be some disciplined restaint and to prove out the theory first before giving false hope to parents who are way too eager to have an answer.
Good post. I disagree though with your comment that:
“I can’t support the idea that it should be shared, first, with lay parents. Until and unless there are at least several independent, double-blind research studies completed, parents have no tools with which to judge the validity of such claims. Yet their intense connection with the issue means that they often feel they must take every possible claim seriously.”
That statement rejects modern evidence based medicine which recognizes the “several independent, double-blind research studies” as the highest standard of evidence but also recognizes lesser standards which clinical doctors can use in their practice. And it also suggests that parents are not capable of weighing carefully the information they receive and which they must given in considering advice for their children from their physician or other health.
professionals.
Evidence Based Medicine:
“Evidence-based medicine is the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. The practice of evidence-based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research. By individual clinical expertise we mean the proficiency and judgement that individual clinicians acquire through clinical experience and clinical practice. Increased expertise is reflected in many ways, but especially in more effective and efficient diagnosis and in the more thoughtful identification and compassionate use of individual patients’ predicaments, rights, and preferences in making clinical decisi ons about their care. By best available external clinical evidence we mean clinically relevant research, often from the basic sciences of medicine, but especially from patient centred clinical research into the accuracy and precision of diagnostic tests (including the clinical examination), the power of prognostic markers, and the efficacy and safety of therapeutic, rehabilitative, and preventive regimens. External clinical evidence both invalidates previously accepted diagnostic tests and treatments and replaces them with new ones that are more powerful, more accurate, more efficacious, and safer.
Good doctors use both individual clinical expertise and the best available external evidence, and neither alone is enough. Without clinical expertise, practice risks becoming tyrannised by evidence, for even excellent external evidence may be inapplicabl e to or inappropriate for an individual patient. Without current best evidence, practice risks becoming rapidly out of date, to the detriment of patients.”
Center for Evidence-Based Medicine (CEBM) and the British Medical Journal, 13th January 1996 (BMJ 1996; 312: 71-2)
It is sad that the American Association of Child and Adolescent Psychiatry would not let him present, it is always better to listen.
The first step to knowledge is to listen. He may be wrong, he may be right, but at least listen to any evidence he may have. I haven’t seen the psychiatrists getting very far with this one.
Harold, you’re right. In my haste to make a strong point, I overstated the case. There are certainly plenty of obviously useful approaches to autism (and other issues) that have been proven through a variety of means – and not strictly through the “gold standard” approach of double-blind placebo-based research.
My frustration comes from the reality that we in the autism world often relax these standards so far that standards just disappear altogether. Cannell is not really the case in point (he actually has done some research!) – but there are folks out there who are more than willing to present their “discoveries” as fact when they’ve done no research at all beyond an ah-ha moment and a few Google searches.
Just the other day, I was writing about the hole in the ozone layer for a client. A scientist explained that the decline in ozone allows ultraviolet radiation through the atmosphere, which (among other things) can have a negative impact on DNA.
Ah ha! I thought. Researchers say many cases of autism are caused by spontaneous mutations in DNA. UV can cause mutations in DNA. Autism is caused by the depletion of the ozone layer!
Best,
Lisa (autism guide)
Parents also have a responsibility to look for sound research. Desperation does not cancel out our need to use common sense.
Toni, older paternal age may be not the cause, but rather the result of autism spectrum.
Lisa:
Of course research should proceed. The question is what do parents do in the meantime?
The reason I have attempted to bypass the years of waiting neccesary to prove or disprove my theory is simple. We are talking about vitamin D deficiency, not a drug.
All I am saying is to treat vitamin D deficiency in autistic children. That’s it; that’s my entire suggestion. How can anyone object to that? If such treatment also improves symptoms, so much the better.
The worst thing that can happen is that the children will have stronger bones. Can anyone object to that?
John Cannell, MD, FABPN
Executive Director
Vitamin D Council
You may also have a reduced risk of cancer as well.
The body makes vast amounts of vitamin d whenever it gets a chance, which tends to point to it needing rather a lot of it.
Unfortunately we don’t give it much of a chance anymore, as we spend most of our lives looking at the world through glass.
Dr. Cannell, I read about your theory at the same time that I learned that my mother & a close friend are vitamin D deficient in addition to reading about the increasing rates of vitamin D deficiency in our culture.
I remembered how working out in the garden made me feel significantly better when I developed health problems after my 3rd pregnancy (which was my autistic son). I also watched one of my sister’s children with ADHD symptoms get much better after being outside playing soccer regularly.
I don’t know if vitamin D is a cause or another of our autistic kids’ metabolic casualties, but I am watching & hoping that you get the support to research this further.
I would add, though, that it is important if you are going to bring this info directly to the public that you include suitable cautions to keep enthusiastic parents from overdoing it.
When Dan Olmsted reported on the possibility that one of Kanner’s original case studies appeared to lose most of his autistic symptoms after receiving gold salts therapy for his JA, many parents eagerly began considering it – totally oblivious to the rather high potential for harm. Fortunately, it’s a prescription product so that slowed them down. Unfortunately, vitamin D would be easier to get & overdo. Several moms have told me that their sons don’t seem to metabolize D properly either which complicates things further.
So I hope that you are able to further your research – just also want you to be aware of the potential for harm so you can CYA — but especially protect the children.
Thanks, Dr. Cannell, for your comments. I fully understand your frustrations – but also heed Grace’s warning about overdosing and toxicity.
Just looked up the issue of possible side effects, and noted that bone loss (along with other problems) can become a serious problem. The same issue of bone loss has already arisen among children with autism who are on dairy-free diets. Evidently their parents chose to remove dairy from their children’s diets without medical supervision, and were unaware of the nutritional issues that could result.
Several supplements, including fish oil, vitamin B6 and 12, magnesium, and a substance called DMG are all recommended by alternative practitioners for children with autism. In some cases, there appear to be positive benefits. But it is critical that parents have enough information and support to choose supplements wisely, watch for and record positive and negative changes, and alter dosages accordingly.
I must say that I found it very tough indeed to find a doctor who was covered by my insurance plan who could and would not only recommend supplements but also monitor and manage them. As a result, I took it upon myself it give it a shot. In our case, there were really no results at all, positive or negative. But others have been more or less fortunate.
Lisa (autism guide)
It is very difficult to overdose with vitamin d3, It is very easy to overdose with 1,25(OH)D. There are no reported cases of overdose from sun exposure and the only ones from supplements are industrial accidents (incorrectly dosed tablets). If you have a disease like Sarcoidosis the 1,25(OH)D system is deregulated and then taking d3 will cause problems.
It is reported that in 1 day the body can make 10000-20000IU (fully body exposure until the skin is slightly pink) so a 1000IU willhave little effect.
I am the mother of 2 non verbal autistic boys. One is 19 and the other 16. I don’t believe in the vitamin D deficiency as a cause. I don’t see how, really.
No human being has ever suffered from bone loss as a result of removing cow’s milk from the diet. In fact, osteoporosis is common only in societies where people eat a lot of animal protein, including cow’s milk. Babies should get breast milk, for optimum health. After weaning, humans should get no milk or other dairy foods. Dairy foods might interfere with the activation of vitamin D, so they would make the problem worse, not better.
The thing is, it doesn’t HURT to take vitamin D drops. It could only help, and at less than 20 bucks for a bottle of Vitamin D3 for a 2+ year supply, I think it’s worth supplementing your child with it, whether they find out it’s true or not. What can it hurt. What if it actually is a breakthrough and we parents with autism kids missed the boat because we thought we’d wait years for the double blind placebo studies?
The biggest problem with a “What could it hurt?” argument is that, while physiological harm from any particular treatment may be minimal, there can be a significant economic harm in applying therapies which have no benefit. This harm applies not only to parents – who may spend every penny in the quest to help their child – but for society in general, if significant resources are diverted from actual evidence-based research and treatment to distributing treatments which have no proven effect but “couldn’t hurt to try.”
As one of my personal physicians puts it, “There are plenty of things in the health food store that won’t hurt you, but many of them may not help you, and all of them cost money.”
One of the more promising avenues of research in autism was given in a recent issue of Chess Life; there, a young adolescent boy afflicted with autism began to study chess. As he became more and more interested in chess, he slowly fought his way out of autism to become a very high functioning (normal) young man whose autism had all but disappeared.
I recommend that studies be undertaken to see if it is possible to fight obsessive compulsive behavior by fighting it with other obsessive compulsive behavior i.e. fight fire with fire. Maybe by breaking one type of this behavior may make it easier to fight the weakened new variety until the child has so many of these, each becomes successively less important.
Perhaps we can learn something of the differences between “normal” babies and how they play with chess pieces when they are a few months old as opposed to potentially autistic babies. Perhaps the autistic babies will play with the pieces, and not look at a parent when that parent is talking to them, when a normal baby, will stop and look at their parent or another individual. A tendency to place the pieces in certain repetitive patterns as opposed to random placement, may be an indication of potential obsessive compulsive behavior.
We should study the role of computer related stimuli because we have engaged in another of the greatest unregulated experiments ever performed i.e. unlimited exposure to binary code without knowing its influence on the human mind. Think about it: We test the carcinogentic properties of steak with greater thoroughness than we test the impact of binary oode on the human mind. Does vast exposure to binary code impact on behavior? To the best of my knowledge, this has never been studied.
Another unregulated experiment bearing on autism is covered in my article; just google my article, “mensanomonograph global experiment, post 556″.
Just as if we were to do an experiment to determine sensitivity to peanuts and swamped the data with irrelevant material i.e. a vast pool of individuals who have no genetic predisposition to peanut toxicity, the quickest way to disguise any genetic susceptibility to autistic behavior is simply to bury it in the statistics without considering the highly specific nature of the toxicity. The same may be true of neurotoxins such as low levels of mercury—overwhelmingly safe to the vast majority of children, but a “success” rate of maybe one in 10 to one in 20 children with just the right genetic makeup. It may be one gene or multiple genes, one toxin or accumulations of toxins e.g. high levels of lead at the same time as the mercury from thimerosol.
We know so little about the genetic causes of so many diseases and their respective roles and what environmental factors play a significant role. Simply looking at a vast pool of individuals who “shake out” 1:166 children with autism makes as much sense as saying one child in 100,000 will have an allergy to peanuts. The right diagnosis will reveal a highly succeptible gene pool who are far more likely to develop an allergy to peanuts.
Trying to ‘bury’ causes of autistic behavior with bogus double blind experiments is a sure fire way to impede research into autism.