In the first part of this series, I discussed the way my family was sucked into the world of autism biomedical treatments. Now, I'm going to discuss the more "heavy duty" treatments, as well as sum up the biggest problems I see with autism biomed.
KosAbility is a Sunday 4pm(Pacific time) community series by volunteer diarists, as a gathering for people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of "disability" includes temporary as well as permanent conditions, from small, gnawing problems to major, life-threatening health/medical problems. Our use of "love someone" extends to beloved members of other species.
Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or generally to everyone, share something you've learned, tell bad jokes, post photos, or rage about your situation. Our only rule is to be kind; trolls will be spayed or neutered. If you are interested in contributing a diary, contact series coordinator postmodernista.
|
A caveat, before I start: I'm only going to discuss the treatments I personally experienced. This means I won't be discussing
the Lupron protocol or the
disgusting "treatments" used at the Judge Rotenburg Center. (MASSIVE trigger warning on both of these, but especially the latter one.) While I may do a diary on these forms of medical abuse later, they're not things I experienced. My experiences were simultaneously more benign and more insidious.
They began with a trip to Florida.
I remember being excited to go to Florida, because I thought we might be going to Disney World, or at least the beach. Since we stayed there for a decent length of time, we had at least one trip to the beach, but the lion's share of the trip was spent in the doctor's office.
We stayed in Florida for two weeks, that being the amount of time it took for one course of therapy, in the care of Doctor Jeff Bradstreet, of the IDCRC. He was the "autism expert" my mother picked to cure me once and for all. I didn't know it then, of course, but this guy had quite the checkered past, having been a Christian preacher and a homeopath before turning his attention to autism cures. He was also a real fan of Andrew Wakefield, having had him at his clinic after Wakefield lost his license to practice in Britain. Basically, if it was dodgy and autism related, Bradstreet was the man to call.
According to Quackwatch, " Bradstreet testified that the recorded diagnoses varied, depending on the nature of the problem being treated at that particular time. It appears to me that Bradstreet decides which of his nonstandard theories to apply and records diagnoses that embody them." Well, I can't speak for any other patients, but the theories Bradstreet applied to me were the "mercury causes autism" theory, the "brain damage causes autism" theory, and the "lack of proper hormones causes autism" theory.
There are three therapies I remember the most, each linked to one of these therapies: chelation, HBOT, and oxytocin/secretin.
I'll start with the most boring. Oxytocin and secretin are both hormones. Oxytocin is the hormone that shows up when you feel affectionate, have sex, or get pregnant; it's often called the "bonding chemical". Secretin, according to my few minutes of google research, is a digestive hormone, mainly affecting the pancreas. I don't know what connection, real or alleged, these hormones have to autism. Be that as it may, Doctor Bradstreet had me taking doses of both.
I remember these because they had an unusual method of delivery, unlike the handful of pills I took with every meal. The secretin was a nasal spray, which I didn't like very much because it made the inside of my head feel gross. The oxytocin was a cream I had to rub into my arms. It smelled strange and took a good half hour to fully rub in. To distract me, my mom played "Fiery Jack" by the Toy Dolls a half-dozen times while I did it.
(No one ever said my family didn't have a sense of humor.)
The second treatment was hyperbaric oxygen therapy. Normally, HBOT therapy is used for people who've suffered extreme oxygen deprivation- trapped miners and such. It saturates the patient's blood with oxygen in a pressurized environment. Autism biomed people believe that autism is at least partially caused by oxygen deprivation to important parts of the brain. This was actually one of the more pleasant therapies, because it was basically a long session in a tank that looked like an escape pod where I just had to relax, take deep breaths, and read books. I read through the entire Anne of Green Gables series and Howard Pyle's King Arthur books that week, among others.
The last treatment is the most controversial: chelation. Chelation is a treatment that strips heavy metals from a person's body. It's been linked to the death of at least one autistic child. And, frankly, it doesn't work. I remember this was the worst treatment out of all of them, because it involved shots and suppositories. Even as a fully verbal kid, I had trouble understanding what was going on and why this was necessary; I can only imagine the hell that attempting to chelate a non-verbal autistic kid would be.
There were other treatments- something that involved a lot of blood draws, among other things- but I don't remember them as well.
Now, here's the thing. With the exception of chelation, most of these treatments weren't extremely risky. They were pretty bog-standard "alternative" medicine. And after the treatments, my social skills and sensory issues did seem to improve. So why am I so vehemently opposed to them?
First, they were, frankly, a scam. I'll grant that the oxytocin and secretin may have had some effect, but there is no way that the other treatments could work as described. Hyperbaric oxygen therapy works by providing oxygen to tissues that aren't receiving it, thus reversing damage; according to the James Randi Educational Foundation, there's no way that HBOT therapy could work. Chelation, as I've already mentioned, is also ineffective.
So, how did my improvement happen so quickly? The simplest explanation is that I had a developmental leap around the age of ten, which Dr. Bradstreet took credit for. Autism, after all, isn't a developmental stasis; it's a developmental delay.
It's bad enough that these treatments had no effect. But worse, my parents were charged a lot of money for these treatments. I don't know the exact amount, of course, but from what I've been told, it was enough that we went into a not-insignificant amount of debt to pay for them. It should be illegal to charge so much for so little.
Last of all, these treatments trivialized both my autism and my physical problems. I have gastrointestinal issues and fibromyalgia, and have since I was a kid. In the worldview of the alternative medicine practitioners I visited, these ailments were both tied to my autism. Cure the one, they reasoned, and the others would go away.
Since I made great strides after my treatment, Doctor Bradstreet pronounced me "cured", and even offered to "downgrade" my diagnosis to ADHD. My mother wisely declined, because she knew a lot of people didn't see ADHD as a "real" disease. But whenever I was having a symptom of one of my physical illnesses, she reasoned that it must be because I wasn't keeping up on my diet like I should have. I was eating food that wasn't on my diet, for example, or I wasn't taking my dietary supplements. Because of this, and because of the anti-'traditional' medicine outlook of many of these practitioners, I didn't get any medical treatment for these conditions until I'd grown up and moved out of the house.
I have three recommendations to make sure that things like this don't happen to anyone else.
First, I think most people need to have a strong education in critical thinking, and a certain degree of medical education, starting in elementary school. No, you don't need to know all the bones of the hand or all the ways that infectious diseases can manifest, but you do need to know what's plausibly ailing your body and what's not. At one point, I told my friend the "leaky gut" justification for the gluten-free diet: small particles of food were getting out through microscopic holes in my intestines, hitting my bloodstream, and acting like crack cocaine. He looked at me as if I was from Mars.
"Sepsis," he said. "The thing you're talking about is sepsis. It can kill you."
Of course, if you know what sepsis is, it becomes clear that the 'leaky gut' theory of autism just doesn't work. If you have even a modicum of medical education, paired with critical thinking skills, it can save you from falling into the hands of quacks.
Second, I think that we need to put much stronger restrictions on alternative medicine practitioners. While I'm not sure exactly which regulations need to happen, I do know that alternative medicine practitioners should not be allowed to advertise that they can 'cure' any disease. We also need to combat the view alternative medicine practitioners like to espouse that "Western" medicine doesn't work, and disallow practices like chelation.
Last, we need to make sure that all kids are able to receive proper medical care. A minor shouldn't have to go eight years receiving nothing but hilariously inadequate "alternative" medicine because their parents don't believe in doctors. Again, I'm unsure how to implement this; leave some suggestions in the comments.
Thank you for your time, and for listening to my story.