There are lots of reasons why parents of autistic children might pursue unconventional therapies. One of them is because the concept of proof—or lack of proof—can be transient, things that are at one time believed to be proven can be disproven (bloodletting, anyone?). For the purposes of this post, I am using the term “unconventional” to mean treatments that are backed with less or inconsistent scientific evidence. Rather, they are supported by smaller studies, anecdotal evidence or personal accounts.
Unconventional treatments for autism range from the innocuous (such as a gluten-free, casein-free diets), to the illegal (such as stem cell treatments which must be delivered outside the United States). Some of the more extreme treatments I have learned about include:
- Parasitic Worms. Introducing parasites into the intestine on a short-term basis to boost the immune system.
- Bleach. Diluted bleach ingested orally or via an enema, multiple times a day, to eliminate bacteria, parasites, yeast, or heavy metals in the digestive tract.
- Lupron. A testosterone-inhibiting drug. Based on the belief that testosterone magnifies the toxic effects of mercury in the bloodstream.
These are just a few examples, there are many more. In the abstract, this list probably seems pretty horrifying and unconscionable. I chose the items on this list specifically because they seem horrifying, most alternative treatments are not this scary. We have not tried these therapies on Cheeks, although we have tried things that are less invasive than those listed above. But would we ever try something more extreme?
Consider this: your child is diagnosed with a life-altering disorder. He or she spends their days in physical discomfort, filled with frustration, and without personal safety. He or she is unable to access things that typically bring joy, such as friendship and education. No one can tell you why this is, and no one can give you a clear treatment plan that will help. Every solution you pursue comes with little or no change, and even when you see progress, it comes in small steps that are painfully slow to arrive. It’s all enormously expensive, and even those treatment options that are mainstream are still not covered by insurance. Everyone in your family is affected on profound levels, whether financially, emotionally, or socially. At the same time, your peer group that is facing similar challenges tell stories of success with treatment plans that your doctor never offered you. You easily find supporting evidence of these stories, even though the studies may be small ones. Can you say with certainty that you wouldn’t act on this information?
We follow certain rules when choosing new therapies for Cheeks. One is that we must first be as sure as possible that they will not harm him, physically or emotionally. The other is that we only try new things one at a time, so that we can tell which interventions are working and which are not. Furthermore, I believe that any unconventional therapy is best served in conjunction with more thoroughly tested options.
I also don’t believe that every symptom of autism needs to be “fixed”. Cheeks is already perfect the way he is, I am reminded of that every single day. There is greatness inside of him, I know that for sure. I don’t want to alter that as part of shaping him into the kind of person the world expects him to be. I, like any other parent, only want him to be able to live a happy, healthy life.
But seeing your child sad, in pain, or hurting himself daily—these are the things that make parents desperate for help. Desperate people do desperate things. And sometimes, desperation is the motivation needed to make a difference.