Snake Oil
By Kristin Youmans
I’m always afraid that when my son jerks his body I’m going to break the needle off in his skin. It’s this tiny needle, about the length of my pinky nail, filled with vitamin B which is supposed to help with his autism. My husband and I take turns holding him. Usually I do the holding, even though I’m not as strong because most days I can’t handle shoving a needle into my son’s skin. He cries for a few seconds usually and runs away looking back at us as if we have just physically assaulted him – and we have, really. To us though we are just doing what we can to try and make him better. But I found myself wondering what exactly is better? Is giving him a shot of vitamin B really going to help? Are the supplements, the detoxifiers, the special diets, and the behavioral therapies really going to stop autism? The medical world claims that most of those treatments are pseudoscience; a way to take advantage of the emotions of desperate parents. A lot of it is. But when there are no other options and when you feel in your gut that there is something reachable within your child, anything that sounds reasonable is worth trying.
One in every 166 children is diagnosed with autism. There is a huge population of children coming into this world that can’t communicate either from a lack of language, or a lack of ability to use reciprocal, or what we would think of as a back and forth type of communication. They are all different from one another in so many ways that the disorder name has evolved from “autism” to “autism spectrum disorder”. The definition has expanded because not all autistic children fit the old mold. They aren’t emotionless and unaware of worlds other than their own. They are all over the spectrum from extremely social and emotional to something more like most people remember the character Rainman to be – extremely rigid and separate with repetitive behaviors and fits. The numbers of children that exhibit some of these types of behaviors and are diagnosed as autistic (1 in every 10,000 just twenty years ago) have increased at such exponential rates that the search for a cure has literally exploded. There is a new target consumer in the market who is desperate to buy something, anything that gives them an ounce of hope.
A mother I know whose son is also autistic called me excited about this new supplement that allows her son to eat gluten and casein. Gluten is wheat protein and casein is a dairy protein and many autistic children are thought to be allergic to both, which is why so many of them have such severe digestive problems. This “Pro-Enzyme” she told me about is a one ounce bottle of drops for $30 that you give to them before they eat anything that may have gluten or casein. To me this sounded suspicious because from what I’ve read it takes up to 8 months to just get gluten out of your system. How could a couple of drops help?
I asked her, “What is it though? I mean really, what exactly is it that could make this digestion suddenly possible?”
“It’s enzymes.”
“What kind of ‘enzymes’?”
“Let me see.” She paused to read the label.
“Oh, okay. It has PBB, Chlora….” She began trying to pronounce the list of ingredients and ended with “You know, all that good stuff.”
But I don’t know any of that good stuff. What I do know is what she is feeling. She’s trying to carve out some form of normal, some form of control over something that has turned her entire world upside down. She hangs suspended, left wondering how and what she can do to fix this. There are no ice packs, no bandages, and no pills that will fix this. Trying to control autism is like trying to lasso a hurricane. Most days it feels like an impossible feat.
So parents and caregivers are spending millions of dollars on treatments that have not been approved by the FDA and autism has become an industry unto itself. There are doctors that promote products, and there are testimonials and books and articles all about how this supplement, or that diet cured this child. I found myself staring and nodding as my son’s doctor (a doctor, I can’t go without saying, whom people travel from all over the world to see and whom insurance companies refuse to pay for) told me for the third time the same testimonial of the little Asian girl who started taking these supplements and suddenly spoke - not only English but Chinese as well within six months.
The questions were standing in a corner in the back of my brain, raising their hands waiting to be called on but I ignored them and bought the products she was pitching. Not because I necessarily believed they would help, but because what if they did – what if this was going to be the one thing that worked for my son and I didn’t try it? How is it possible to find a line to draw between being had and being willing to do anything we can that will help our child?
This doctor gave me such a barrage of different treatments – a cocktail of cures - at once that any improvements he did make I would not be able to attribute to any specific thing but that didn’t stop me from hoping for miracles. Then one day – just about a week after he was first on the supplements, he said apple. It doesn’t sound like a huge deal to anyone who doesn’t know my son, but him looking down at this pear (we can’t be picky, fruit is fruit) and saying the word apple was like opening a damn. My husband and I went nuts yelling and clapping and saying apple over and over. My son was so excited he walked around smiling and laughing carrying around this pear and saying apple over and over all day.
Then the next day came and there was no more apple. We tried over and over to reach that point, showing him pears and apples repeating the word over and over but he just wouldn’t say it. He would look away, avoiding eye contact – not so much purposely avoiding though that may be what it seems like to someone outside of his world – but more like just not trying to find that little space of connectivity between him and us. He was choosing a different path to walk down.
Then the next day came, and the one after that, but for whatever reason he just wasn’t making the leap from his world to ours. I got frustrated. I spent every morning and every night measuring and pouring these “cures” and everyday putting him through behavioral and speech therapies and nothing was happening. So after a few months, I stopped. I stopped trying. I hate to admit that but it’s true. I didn’t stop caring, I just stopped trying because I felt like I was in one of those dreams where you are trying to scream but you can’t make any sound. Nothing I was doing – and I felt I was trying everything at the time- was working. His therapists were growing openly frustrated with him, and the sessions were turning into wrestling matches. Because the spectrum is so wide the therapies have to be custom fitted almost, based on the child’s personality and his therapist was not taking into consideration my son’s need to be in motion. Instead she fought him which made me less willing to participate. The supplements weren’t changing his behaviors. Of course stopping didn’t help either; all it did was add a layer of guilt to frost the cake of my frustration. Eventually I had to give in. Even if it wasn’t real, and my son wasn’t progressing, at least I could know that I was doing what I could. I couldn’t watch my son from afar anymore.
The second I first told my son’s pediatrician the words, “He’s not talking” it felt like I had jumped out of an airplane. I felt the descent coming before she even spoke. She listed a couple of different numbers to call, places that evaluate children for developmental delays. I called the minute I got home – waiting to hit the ground. I did as much reading as I could before the appointment but I stuck to the books that were about speech delays, words like autism registered as too much of a nightmare for me to even consider, so I didn’t.
Then came the appointment and the words, “This child has autism” and my descent was over. I hit the ground. My son wandered around behind me, playing with the toys oblivious of what had just been stamped on his forehead. I asked every question I could think of. It felt like my heart and mind just slowed to a crawl, trying to find answers in a room full of mirrors. They told me autistic people are “on their own plane” and they don’t pick up language very quickly or understand social interaction. Most children imitate adults or other children, an autistic child won’t – or at least not appropriately. Then, as the two therapists were darting these ambiguous answers at me that seemed to contradict each other at every pass, my son came up behind me and did something that sent shock through the room. He hugged me. It was because of that moment of shock that I realized they didn’t know everything.
The truth as I know it now is that nobody, especially not the “experts” know what autism really is. It is a mystery to them as much as it is to me because the children are all so different. Why can my son express love and emotion, engage in eye contact and back and forth communication but not understand language? Why do the words I speak to him come out in his mind and his mouth as babble? I have to say though that whether it is the supplements I have read about and decided to give him individually, or the amazing new therapists but these days are in an upswing. Though I have to say it’s scary to write about because I’m afraid of a regression. In the meantime though, he’s learning sign language. He slowly makes some of the sounds of the words as he signs, “elp” for help, “rrr” for more, “ew” for you. His signs are almost as sloppy as his words but it doesn’t matter. My days now end with him signing, “I mrr ew” for I love you, and I have never been more excited. He watches my face when he says it and sees me smile and cry a little and I can’t describe it other than the cliché that he literally beams with pride because that is exactly what he’s doing. He’s found a way to communicate. He may not be cured, but he is better, whatever it is that made this happen – even if it’s just superstition and snake oil I’m willing to do anything to see him smile like that.
A medical doctor named David Adams reported to the website Autism today that he has spent over $110,000 dollars in the last four years on non-FDA approved treatments for his six-year old son who was diagnosed with autism at age two. He reports that prior to his son’s diagnosis he was a firm believer in hard science. Nothing that wasn’t already proven by the government to be effective was pseudoscience and a waste of money. Now his house has a hyperbaric oxygen tank, an infrared-light sauna, and a floor in his house dedicated to sensory therapy. He has tried every kind of reasonably plausible treatment that he can get his hands on. But his son is not cured. He has progressed though, but would it have happened anyway, without $110,000 dollars spent on pseudoscience? Has he wasted his money on snake oil cures? Have we all?
He believes now, as many parents of autistic children do that this is something physiological. When all of these children begin their lives with a normal rate of development but suddenly around the age of two they all just drop out of life, all showing the same types of symptoms – gastrointestinal problems, loss of language and communication skills, overly sensitive or insufficiently sensitive to sensory input. With the epidemic status it has reached something we are doing has to be the cause. Two years is when children are vaccinated, which is why many parents, including David Adams, believe that autism is caused by a mercury containing preservative in vaccinations called themerisol. Some lab rats given this preservative display autistic behavior like repetitive actions and an inability to move from one activity to another. It is believed that some children because of an immature immune system may be unable to metabolize the preservative. Themerisol has been banned since the 1990’s but the cases of autism have not dropped.
Parents of autistic children have heard these statistics a they have heard an equal amount of times that Themerisol is not to blame. But what I want to know is what happened to the lab rats? Do they make them autistic and then walk away, leaving them to just repeat themselves for whatever they decide remains of their lives, or are they trying to find a way to reverse what they have done to them? If they are, and I know that they must be – it simply isn’t going fast enough. We watch our children everyday do battle every day with a world they are unable to participate in. So, in lieu of sitting back and waiting for the “experts” (the same experts who may be the cause of the problem) to come up with something to fix it we do our own research and find our own cures.
The Autism Research institute publishes results of questionnaires regarding the results of various treatments parents have been using. They list out the different types of treatments in classifications of prescription drugs, supplements, and special diets. The results that parents get to chose from are “got worse”, “no result” and “got better.” Got better? Does that mean that the child is cured, or simply gotten “better”? The web site is sure to clarify at the bottom that “got worse” means any reported increase in “bad behaviors” but there is no clarification of what “got better” means. One can assume that it just means less “bad behavior”. There is no choice for “cured”. There are only a few books or testimonials about “cures”, and in many of those cases where the child is “cured” it is a plausible question to ask whether or not the child in question was autistic to begin with.
So, Instead of expecting miracles, I hope for apples. Instead of nodding and staring and giving my son anything I am told will help, I read about the different options and try to make informed decisions about whether this therapy is worth trying. The National Institute of Mental Health (NIMH) offers advice to parents of autistic children to ask themselves when deciding on treatment alternatives whether or not their child’s behavior will be closely observed and measured. This makes sense if your child is undergoing a clinical trial – which in most cases is funded either through the government or pharmaceutical companies – but frankly the numbers of children being studied versus the numbers being diagnosed are vastly different. Those of us who are left swaying in the wind where there is nobody except ourselves willing to measure and observe our children’s behavior are not going to stop fighting for our children. There is a new market consumer and it is me - and all of us who hold out an ounce of hope to have something, anything that might at least help make tomorrow a little bit easier. Until the medical world catches up with our children, and until our children catch up with the rest of the world, we will keep searching and buying and trying out whatever we can. There isn’t a cure but there are improvements, and whether or not those improvements would be possible without the aid of all of our efforts, I for one am not willing to take the risk and find out. Any step forward is just that – a step forward, and when this disorder is all about taking steps backwards, at least it’s something.