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Thursday, June 5, 2014

Puzzling Pieces

I use social media a lot. As a newbie to the Autism community, I find being able to connect with other parents an invaluable resource. Of course with all of the good, there comes the bad as well. I have found myself at times having to deal with people who will discredit you as a parent, belittle your children, and completely deny that Autsim even exists. Then there is the common conundrum, the well meaning random person on the internet (or in real life) who has read or seen something about Autism and goes on to share it with you. Don't get me wrong, we love helpful advice and knowledge that we can actually use, but unless you live or work with an Autistic person there probably isn't much you could offer me in those regards. If we have an internet connection and a tv, we have probably already heard about it. We love support, and welcome it, but the kind we could use more of is a listening ear, a helping hand, and an open heart, but I digress. Recently on my Instagram account, under a photo of one of my precious boys, sat the dark side. Biomed. This led me on an investigative journey that would even put one of Timothy Leary's LSD trips to shame. This is the Autism medicine show, the cure for all that ails you.

My first stop was the blog that was mentioned in the Instagram comment. At first glance the blog seemed benign enough, a mom raising an autistic daughter in the Midwest. Once you got past the pretty pastel layout and fancy fonts, there it was. My first stop on the crazy train to "heal" Autism, the Jenny McCarthy diet and visits with a long distance Biomed "doctor" who makes Skype calls. So, this is isn't that far off the deep end, but it is still a little out there for me. I am not buying this whole gut/brain/Autism connection. Autism is a neurological/developmental disorder. No diet is going to make Autism go away. The worst thing about this was the mom had asked her daughter's "doctor" about adding Shakeology to the little girl's diet and he had approved it. (Wait it gets better.) The mom is also a very high level Shakeology salesperson. I wonder how much of her sales are from parents who are led to falsely believe that this diet and Shakeology will "heal" their children and their Autism. Those are some pretty shady sales tactics. If you do some Googling, you will find she is not the only Shakeology rep preying on the Autism community. Beware the multi-level marketers. They don't have you or your child's best interest at heart. They are only concerned with selling enough of their product to get that luxury vacation or new car. There are pretty noninvasive things and new age hoodoo that I could group in with the "deprive your child of any enjoyable kid food" diet, like essential oils that can treat anything from a cut to ADD/ADHD, and so on. I have nothing against aromatherapy, but with people who are hypersensitive (the fragrances in the oils would probably be overwhelming) and are predisposed to allergies (skin reactions to some of these oils would be a concern), I would be hesitant to use these in an Autism regimine. These are some of the least harmful of what the medicine show has to offer. They are still kooky, but the potential for mental and physical anguish is pretty low. 

After a little discussion on my Facebook page about this, I was made aware that there are some very sinister Autism treatments out there. I was not given any details about what these treatments were, so off to Google I went. Shock would be an understatement of the horrors that popped up in my search results. Here laid the dark underbelly of Autism treatment. The internet is full of dark alleys with shady characters whispering, "Psst. Here, try this. You'll really like it.". Just. Say. No. Like I said before, I am new here and I guess being naive about the "curing" movement, I had no idea people were going to such horrible lengths to try and "heal" an Autistic child. 

For the entry level parental sadist, there is a process called "chelation therapy". This is medical procedure used to treat people who have heavy metal poisoning, like lead or arsenic. For those out there who believe Autism is caused by exposure to certain metals, this is the go-to treatment of choice. It is usually administered by injection or IV (there are also pills available) and in layman's terms, it essentially flushes the metals from the body. This process is very dangerous even under its FDA approved uses, but can be even more dangerous in unnecessary applications. It is also not recommended for children. Improper chelation therapy can result in death due to heart failure because the process also removes calcium that is necessary for your heart to function. This treatment was responsible for the death of a five year old Autistic boy from the UK. There is no reason to subject kids to dangerous and unnecessary medical treatments. 

For you mad scientists, I have the perfect thing for you. It also comes with a side of brainwashing so you no longer have to think for yourself, either. This is probably the scariest one for me because it is the most inexpensive treatment and the supplies are easily accessible on the internet. I am going to spend the most time on this one because I was so dumbfounded by this treatment, I spent a lot of time researching it. What I am about to describe to you is pretty disturbing, you have been warned. 

Here's a little back story first. We all know municipal water is treated with a combination of chemicals, one being a member of the chlorine family. It kills germs and bacteria and makes our water safe to drink. Good, right? Not so fast. The chemical's name is chlorine dioxide and the concentration of it in our drinking water is well below the level that would cause us any harm. There is a former gold prospector, Jim Humble, who took this logic, after allegedly curing some men in South America of malaria in a matter of hours, and decided to market this as a cure all for everything under the sun from the flu to AIDS and even cancer. This man is not a doctor or a chemist and he and his cronies are putting people at serious risk. The name of his product is called MMS (see also: Miracle Mineral Supplement, Miracle Mineral Solution, Master Mineral Solution). The volatile chemistry set consists of Sodium Chlorite and Citric Acid. This combination creates Chlorine Dioxide, which is far from being a harmless substance. This material safety data sheet (MSDS) for chlorine dioxide is pretty comprehensive: It's uses in water treatment and in food processing are explicitly laid out by the FDA. Mr. Humble began promoting this chemical in a book he wrote in 2006, and afterwards began marketing it. His protocol instructs you to drink this noxious substance diluted in a small amount of water numerous times over the course of the day. So to break it down, you ingest an industrial bleaching agent multiple times a day that will put you well over the proven safety limits. Drink up! His rather poor understanding of biology, chemistry, and epidemiology (which is very apparent if you watch any of his YouTube videos) mixed with delusions of grandeur make a very dangerous combination. He hides out in South and Latin American countries to avoid prosecution in other countries where he is wanted for the harm he has caused to citizens on those countries. He has even established his own cult, Genesis II, to further allude to credibility and create a sense of trust. He even goes to third world countries where the locals have a poor understanding of science and doses them up with the caustic concoction. What a humanitarian,right? He's a little bit Jim Jones and and a little bit L. Ron Hubbard. It would go a little something like this, A long time ago, in a galaxy far, far away we drank the Kool-Aid and we were healed!  Yeah. That. 

So, what does this have to do with Autism? I am so glad you asked! Enter a former follower of Jenny McCarthy's DAN (Defeat Autism Now) protocol, Kerri Rivera. She has her own Autism "clinic" in Puerta Vallarta, Mexico. You won't find OT, PT, or ABA here, but you will find MMS. The protocol for using this to "recover" children from Autism is a little different than Humble's approach and is called the "parasite protocol". It is based on the misguided theory that Autism is the result of parasite activity in the digestive system and must be started close to a full moon because that is when these worms and nematoades are most active. In a nutshell, We must exorcise the demons! Welcome to the Twilight Zone. In addition to forcing this toxic substance down your kid's throat, you must also use it as an enema and bathe them in it. Can you imagine how traumatic that enema must be to any child, especially to one with Autism who is already very sensitive to stimuli or cannot speak to express their pain? If you need a visual, I suggest the enema scene from the movie "Sybil". Here is an example: In one of Kerri's video Q&A's she even advises multiple enemas a day and even tells of one mother who have her child nine enemas in one day because she kept finding "parasites" is the child's fecal matter. This is pretty freaking terrifying, if you ask me. I will venture to say that what these people are seeing is intestinal lining that is being destroyed by this bleaching agent. 

She also recommends drinking "Vortex Ocean Water". After finding a supplier's website and reading the information on this water, I found that it is made for saltwater fish tanks and says specifically that it is not for human consumption. I guess that warning on Chlroine Dioxide didn't stop them from drinking it, so what is a little fish tank water. Yum!  These people are also reaping major financial benefits from this quackery. They profit from book sales, speaking engagements, and personal consultations. This true traveling medicine show rarely ventures into the United States and lays low in Mexico. I am unsure why neither of these people have been charged with anything in the states. Advising parents to give this stuff to their kids (as well as uploading instructional videos to YouTube) seems to warrant some type of punishment. I can only hope that one day all the damage these people have inflicted, directly or indirectly, will catch up with them. From Lewis Carroll's "Alice's Adventures in Wonderland",  "... If you drink too much from a bottle marked "poison", it is almost certain to disagree with you sooner or later." 

How as a parent can you subject your special needs child to this torture? How do you convince yourself this is okay? I lurked on a couple of the message boards and I still do not understand. There are people who will lead you to believe that Autism makes you less than in order to victimize you and your child. There are also parents out there who are obsessed with perfection and normal. There is no excuse to turn your child into a guinea pig and subject them to painful and dehumanizing treatments. They are not legitimate, have no peer reviews or scientific data to prove the claims of their snake oils and trickery. Please be wise and approach any alternative therapy with skepticism and consult with a real physician about it. Do not let these people prey on your vulnerability. Autism is not a disease, it is only a different way of being. Only acceptance and understanding are needed.