Almost every week I read about an autistic child overdosing on supplements. Every time I think that Google in the hands of desperate parents is more dangerous than a car in the hands of a drunk teenager.
The story is always the same. A young child will be taking a cocktail of various supplements (Vitamin D, calcium, you name it) and will be rushed to hospital after possibly weeks of vomiting and constipation. They are then diagnosed with something like hypercalcaemia. Police then go and investigate a naturopath that put the child on camel’s milk, and every other supplement they could think of. And somewhere else another family is reading up on camel’s milk and preparing to do exactly the same thing.
This pattern is by no means unique to autism. Alternative treatments are used (usually as a complement to traditional medicine) by many people suffering form a myriad of chronic conditions. These may range from cancer to asthma to the common cold.
I understand where these people are coming from. My mother was one of them. She suffered from breast cancer for five years, on and off until she passed away from it ten years ago at the age of only 39. From when it first appeared she started with the diets, the organic food, farmers markets, supplements, naturopaths, special treatments. The amount of innocent fruit and vegetables I pulverized into smoothies is beyond all counting.
After she passed away I continued her legacy of special diets and organic vegetables.
I also went to a nutritionist that tried to sell me special non-pasteurised cows milk. No, nutritionists are not all crazy I just got really lucky. Anyway, eventually I got over my ‘phase’ when I went to uni, learned to apply logic and read studies. I also often had a budget of about $10 for food for the week and that just did not stretch to organic anything.
My point is I understand the seductive pull of alternative medicines. The practitioners see you for an hour, when a normal doctor sees you for five minutes. They have ready answers that ‘sound’ sciencey, with lots of ready-made conspiracy theories about Big Pharma. And honestly a lot of those conspiracy theories are pretty right.
In the USA there IS a problem with over-prescription of medications. The pharmaceutical companies DO actually engage in some very questionable conduct. All those all-expenses paid conferences in the Bahamas probably do sway medical practitioners in the wrong direction. And of course there are awful side effects to some of the medications you have to use.
But you have to understand that if doctors WERE just out to make money, they would be setting up as alternative health gurus. I mean have you seen their mansions? If you want to make real money, you should sell $60 bottles of vitamins. People keep needing to get more of those! The vaccines are only $15 and they don’t need to come back for years.
And it’s important to note that medicine and ‘alternative treatments’ are not always opposed. They are being researched all the time. When they are proved to be effective, they do in fact get embraced by the medical community. So when ‘alternative medicine’ is proved right, it just becomes mainstream.
Doctors are not anti supplement. They just wait for evidence before they recommend things.
The Placebo Effect
The problem with a lot of autism ‘treatments’ and therapies is that they don’t test for the placebo effect very well. The placebo effect is arguably the most important psychological phenomenon in medicine. It is basically a phenomenon where the symptoms of whatever condition you are treating improves, but the improvement is not linked to the treatment you are using. Roughly speaking you are taking a sugar pill, but because you think it should help you, it really does.
The placebo effect is ‘real’, not ‘fake’
Some researchers have speculated that when a person expects a pill or a treatment to do something, it’s possible that the body’s own chemistry can cause effects similar to what a medication might have caused. Some studies have documented an increase in the body’s production of endorphins, which is a natural pain reliever produced by the body. Commonly the stronger a person’s expectation that a particular result will occur, the more likely it is to do so.
It also holds true for negative side effects – if a person reads that they are supposed to get a headache from a medication and strongly suspects that they will get one, they are more likely to actually get it. Together, these things may account for the fact that with a ‘low functioning’ child the placebo effect is much lower, barely in the double digits.
The amazing thing about the placebo effect is that it is not ‘fake’, it is very ‘real’. Real changes do occur in the body, caused by our expectation that they should occur. Of course if you are paying $500 a month for supplements that only work because of a ‘placebo’ effect – it’s probably best to save your money and just give your kids sugar water. Buy a few pairs of shoes instead.
Reasons for placebo effect in autism
This happens to a different extent in different conditions (usually averaging out at about 30%). In chronic conditions like depression or irritable bowel syndrome the effect can be as high as 70%! Autism is no exception to this rule. This effect will be much higher with treatments that are already considered very promising, and especially high on children that don’t have an intellectual disability as well since their expectations are also affected.
Partially this is due to the parents’ flawed observation – that we see exactly what we want to see. They also tend to use supplements when things are going very badly. At this point they may improve naturally but the timing of the supplement or other therapy will make it look like that is what is causing the improvement.
And part of it is because our children know that they are taking something that is supposed to help with their behaviour, and this actually leads to them altering their own behaviour accordingly. The conditions they often get ‘treated’ for, such as anxiety, depression, or stomach pain, are all extremely prone to the placebo effect. Some are also extremely unpleasant (such as chelation) and they may easily alter their behavior in order to avoid these treatments.
Other Problems with Autism Research
Additional problems are also present when you try to evaluate the effectiveness of either a therapy or a ‘treatment’. One is the method used to ‘state the problem’. Do researchers use the diagnosis? Specific behaviours? What if a child’s diagnosis changes over time, or was wrong to begin with? Then how do they evaluate ‘effectiveness’? Through parent evaluations? They can be very flawed. Through clinical evaluations? They only capture a small moment in time. And what criteria do they use – number of episodes, number of ‘autistic’ behaviours, IQ? Children also commonly use different kinds of treatments and therapies at the same time. A child may be doing ABA therapy while also on a special diet and also on supplements. Which one is improving behaviour/IQ?
Many children also learn skills naturally and this may alter their behaviour. For example learning to talk or communicate may decrease meltdowns or self-injurious behaviour. In the past year my son has improved in many life skills. Half of them directly through therapy, but about half have just come in on their own. If he had been on a special diet as well as doing therapy I might have attributed some of the changes to that.
Autism research must be done carefully
All of these things together mean that when a researcher is trying to find a new effective drug/therapy/treatment they have to be very careful. They might have a control group who are given a placebo, while another group are given the treatment. They can make a study double blind (so neither they nor the subjects know which people are in the control group and which ones aren’t). Other things to look for include a large sample size or whether other researchers have replicated the study.
This is often key in autism ‘treatments’ and ‘therapies’ as usually the sample size in a single study will be small. So if there are several studies that replicated the results and used good methodology you can ‘aggregate’ the numbers. In order for this to work they have to be very consistent in how they define the behaviour they are targeting and how they measure outcomes.
Alternative Medicines can harm our children and our wallets
While the placebo effect can be great, it can also be very expensive. There are also many side effects from alternative medications. They are not just harmless multivitamins – in fact there is no such thing as a harmless multivitamin. Having too much of a supplement can be toxic to a child (or an adult). These things interact with other medications they might be taking. Taking things out of a diet that may already be very limited can also have long-term harmful effects for a child.These things should always be done under supervision of experts like paediatricians, dietitians, neurologists and gastroenterologists to name a few. A medical degree of some sort needs to be present.
I have had many conversations about special diets and supplements with other parents. When it comes to supplements and special diets we are collectively so gullible! I am tempted to start a business taking autistic children for walks barefoot in parks – I’ll call it park therapy. Potts Point mansion, here I come.
There are many experts you can turn to for help
Up to 50 to 75% of children with autism may be treated with complimentary medicine of some kind. This percentage is probably higher for children like Michael that also have a co morbid intellectual disability. One third of families start a special diet for their children before they even confirm a diagnosis. Many do it because of the hope for a cure or from recommendations from other families that say it works for them.
Much of this is aimed at or prompted by gastrointestinal issues. A lot of it is, unfortunately, unsupervised, which can have incredibly harmful consequences. Remember, gastrointestinal issues are the most prone to the placebo effect. The placebo effect is so strong with GI issues that sugar pills even work to improve symptoms if you KNOW it is a placebo. If you really do suspect that your child is celiac, or requires help with such problems, you must see a gastroenterologist for a medical evaluation. If there are changes to diets, they must be done with the help of a dietitian.
There IS a place for supplements and diets
Please note – there is a place for supplements and special diets, both with regards to autism and for everyone else. I am in no way arguing that no one should ever take any supplements. Having an annual blood test to show up any nutritional deficiencies would be advised by most GPs. Some people need special diets for various GI reasons, others need zinc or calcium. And there ARE some promising results from some supplements regarding improving IQ in children with autism. You should be looking into everything when it comes to your child.
My point is that when you look at everything, you should be doing so under the guidance of a paediatrician. They have studied for many years, at great expense. They are much better able to evaluate evidence than you or I. Yes, as parents we know our children. But we are also extremely vulnerable to charlatans because of HOW MUCH we want to help them and how much we want to see results. We will see often them when they are not there, or ascribe results from something else (natural growing up for example) to whatever we started last.
So please, I beg everyone reading this article. Sure, go to your complimentary medicine provider, if you find one you like and trust. But first and foremost, go to your paediatrian/gastroenterologist/GP or someone else that went to med school. Ask them about the research on supplements or alternative treatments. Go on PubMed and have a look at the published papers and articles on the subject.
Experts have been training and learning for years and years for a reason. Use them.