Featured photo shows three yellow rubber ducks in a row. Acknowledgement to Clare Bloomfield
Content note: autism cures, ableism, abuse.
Autism is a condition that is plagued by charlatans promising dramatic results if only you’ll take this supplement or buy this expensive therapy. These treatments range from the bizarre to the downright dangerous and abusive. We know there is no cure for autism, because we know that autism is a set of characteristics that accompany a neurotype, and you can’t rewire someone’s brain by feeding them camel milk.
Yet peoole keep using these treatments and touting them as cures for autism. Why is it that these parents (and it usually is parents) are so adamant that the special diet or supplement or treatment they use on their child is effective?
First, there’s a psychological component based on the costs of the therapy. Nobody likes being wrong, and, beyond the simple placebo effect there’s a strong desire for the treatment to work. If you’ve sunk thousands of dollars into a treatment for your child’s autism, you’re going to be looking extra hard for changes to validate your decision to pay for all that treatment. The parents are more attentive and are often looking for evidence to confirm their biases, so they find “improvements”. That’s not to say that these illusions are entered into deliberately; the subconscious mind is adept at pulling these kinds of tricks in order to make us comfortable.
So what about these so-called improvements? They must come from somewhere. Let’s address a few of the claims I commonly see cure-seeking parents make.
My child could not do X before, but now they can.
This is a common logical fallacy. In Latin it’s called post hoc ergo propter hoc. In English that translates to “It followed, therefore was caused by”, more simply, and probably familiar to anyone who has debated with a scientist “correlation does not equal causation”.
The most likely explanation for skill gain in any developmentally disabled child is that they’re simply growing. We learn and grow throughout our entire lives, and autistic people are no different. Autism comes with developmental delays, not complete developmental stasis. We might not hit milestones at the same time as everyone else, and the milestones we reach might not be the same as everyone else, but we do grow, and it’s nearly impossible to predict how much we will grow and learn.
Another one that I see regularly is:
My child behaves differently after treatment. They no longer stim etc.
There’s a lot of unpacking to do with this one, and the cause of this behavioural change could be any of a wide variety of things. The child may have reached a milestone that allows them to regulate their emotions better, resulting in fewer meltdowns, or their environment may have changed in such a way that things are easier to deal with. Those are the less worrying and problematic possibilities. Sometimes, changes in behaviour are a result of the treatment, but this is not necessarily a good thing. Take for example MMS, or “Miracle Mineral Supplement”. This is a chlorine dioxide bleach used in small concentrations to purify drinking water, and in higher concentrations to bleach wood pulp. Speaking autistics who have been given the oral preparation often report that it tastes bad and causes a sore thoat and cough. The preparation is also often administered as an enema, which is an incredibly unpleasant procedure for the recipient as evidenced by the parental accounts of treatments requiring children to be forcibly restrained.
We know that unpleasant stimuli can serve to modify behaviour. If a child receives more “treatments” when they behave in ways that displease their carers, it makes sense that in time they will modify their behaviour to avoid getting extra treatments. This is not treating the autism, nor is it helping the autistic child. Punishment based behaviour modification has been proven to be less effective than reward based practices, and the modifications being made – such as extinguishing emotional expression and stimming – leave the child vulnerable to mental health issues and burnout later in life.
One particularly worrying claim is that children will sleep through the night after a “72/2” procedure, during which an enema is administered every 2 hours for 3 days. I don’t know about you, but being woken up every two hours for three days would make me sleep for a solid 8 hours, even without the added exhaustion resulting from invasive and unpleasant procedures. A sleep deprived child sleeps for a whole night when people stop abusing them? Stop the presses, it’s a miracle!
There’s also the physical effects of any chemical treatment to consider. Chlorine dioxide is toxic, and produces effects such as vomiting, diarrhoea, fever, sweating. The symptoms of poisoning, however, are passed off by fake cure salespeople as evidence of a Jarisch-Herxheimer reaction or “herxing”.
A genuine Herxheimer reaction results from the release of toxins by bacteria during treatment with antibiotics. As the bacteria die, they release toxins which produce symptoms of toxic poisoning. The difference here is that if you gave the antibiotic to a healthy control group, there would be no bacterial infection and therefore no reaction. Since autism is not caused by bacterial infection and chlorine dioxide is not an antibiotic, the reaction is not a Herxheimer reaction. If one were so inclined (and had a willing group of test subjects and no regard for ethical standards) it would be easy enough to demonstrate that the treatment itself causes the reaction, even in healthy individuals, i.e. the effects are those of poisoning.
I’ve posted a bit before on then topic of illness and its effects on behaviour in autistic people, but I’ll reiterate: it is dangerous and unethical to simulate illness and suffering in order to affect behaviour.
Right, now we’re done with that nastiness there are some circumstances under which a treatment may improve behaviour without causing harm. I’m specifically thinking of dietary modifications and supplements that are safe and administered under the guidance of a medical professional. Vitamin deficiencies can cause symptoms like poor concentration, irritability and reduced cognitive function, and should be tested for and addressed by a physician if they are serious. Unless indicated otherwise by a child’s doctor, it is also fine to administer the recommended dose of a good quality children’s multivitamin.
Many autistic people also have some form of IBS (Irritable Bowel Syndrome), which can also cause poor concentration, irritability, and discomfort. Once other potential causes (like allergies) have been ruled out by a doctor, a dietitian may recommend an exclusion diet which cuts out foods which are ikely to trigger IBS symptoms. The important thing to remember is that this diet is a temporary measure designed to help identify what causes symptoms. Restricting a child’s diet unnecessarily and excessively can cause them to develop further intolerances or allergies, so it’s vital that elimination diets are followed under medical supervision and not as a permanent lifestyle.
It’s important to note that neither of the above cure autism, they just take away additional probems that can make autism harder todeal with for the autistic person. Look at it this way: if you have a stomach ache, you can become irritable and unable to work to the best of your ability even before you notice you’re in pain. For autistic people, recognising that we are in pain, or finding the words to communicate that we are is extra hard.
Finally, there’s the big claim:
My child was re-assessed and found to no longer be autistic.
Phew, ok, big news. Autism, as I mentioned before, is a neurodevelopmental disability that has been proven to produce structural differences in the brain. One does not just go from autistic to non autistic. What does happen, though, is that other conditions with similar characteristics get misdiagnosed as autism, even by medical professionals. This is because of how we define and diagnose autism. Because autism has historically been defined and diagnosed by non autistic people, the diagnostic criteria are based around observations of behaviour. This makes them inaccurate.
A simplifed example is trying to diagnose the cause of scratching without asking the patient any questions. You can see that they are scratching, but it could be due to having a physical cause for the itch or because they have a psychologically rooted compulsion to scratch. Without asking them how they feel, you might not know, and might end up prescribing sedatives for someone who really just needs some bug bite lotion.
It may aso happen that the patient stops scratching, not because the cause has been successfully treated but because they have found other ways of dealing with it, like breathing exercises or distraction. Again,without asking them, we can’t know whether they stopped because the condition went away. Similarly. with autism, a previously diagnosed person may “lose” their diagnosis because they no longer behave in an obvious it autistic fashion. The way their brain processes information hasn’t changed, they’ve just learned to “pass” as a non-autistic person, which comes with its own risks.
To conclude, then, there is no cure for autism. If a diagnosis has been revoked, then at some point there has been a misdiagnosis. Either the child was never autistic to begin with and has had a similarly-presenting condition successfully treated, or the are still autistic but not detectable to the diagnosing professional. Changes in behaviour can be the result of other conditions being treated which makes self-regulation easier, or the result of deliberate hiding of autistic traits in order to avoid unpleasant treatments. Remember, folks, if it quacks like a duck then it’s probably a duck. Always check with a reputable doctor of medicine.