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.
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Wheat, rye, oats, barley, milk, and sugar. Growing up, I recited this list like a litany, each item a deadly toxin that I had to avoid at all costs. I knew, with all the fervency of gospel, that if I ate even a single one of these things, the consequences would be dire. My mother told me that if I cheated on my diet, my stomach would bloat like a balloon, I'd suffer a psychotic break, and I'd wind up dying of colon cancer in my forties. I implicitly trusted her, and why wouldn't I? The doctor I saw for my Asperger's Syndrome had told her all of this, and she took it as gospel. It took me nearly eleven years to discover that none of this was true.
I was diagnosed in the early 2000s, before autism was commonly recognized by the general public. My mother was told that there was nothing she could do to "fix" me, and she refused to take that as an answer. She decided to do her own research, aided by prayer and Google. She taught herself to read scientific papers to her own satisfaction, and began to look for an Answer. Eventually, she found a website that led her to one maverick doctor, then another. Before long, we'd stumbled, head-first, into the weird world of autism biomedical treatments.
Before I want to go any further, I want to say: I'm sure my parents, the doctors, and some of the people creating these theories had good intentions. I'm not railing against people who had my best interests at heart, and I am grateful to my parents for what they did for me, even if it was, at times, highly misguided.
That being said, I think that these treatments were, at best, unethical, and at worst, harmful to my health. In this series, I'm going to give a quick overview of the treatments, their positive and negative effects, and why I think treatments for autism need greater regulation. This installment will cover my family's entry into the world of autism biomedical treatments, and how it paved the way for the more extreme treatments that were to come.
The first treatments I can remember were fairly standard autism treatment at the time. I remember being given a laundry list of social stories: short comic-like stories intended for autistic children, which discussed issues I was having dealing with the strange creatures I shared this planet with. Don't make comments about other people's appearances, for example. Don't blurt out the answer in class, even though you know every single answer and are bored to tears. Don't bite your nails or rock or spin around in public. My mother also had me do "social autopsies". I'd watch a movie, usually a comedy, with a socially awkward major character, and explain why everything they were doing was socially inappropriate. And of course, there was the group therapy session once a week, where I'd meet with a few other disabled kids and we'd make our best attempts at modeling normal conversation to each other.
I'm a little ambivalent about some of these treatments, but I can say one thing about them: None of them were hazardous to my physical health. I learned a lot of things from the social autopsies, the social stories, and social skills group. While I may not agree with some of the things they tried to teach me, they definitely helped me cope through elementary school and most of middle school.
By this time, though, my treatments had gotten off on a different track.
The first "unusual" doctor I remember seeing was Doctor Lonsdale. He was originally a doctor at the Cleveland Clinic, which was the third best hospital in the country at the time. This, of course, was before he began to "support the idea that healing comes from the body itself rather than from external medical interventions."
I remember that Doctor Lonsdale was a terrifying old man with thick glasses, a passionate voice, and an office full of pills and nutritional supplements. It was long enough ago that the details slip my memory; I do know that I experienced a developmental leap around that time that convinced my mother that it was true, but I can't remember whether we went once or only a few times, and I can't remember all the consequences of this visit. Be that as it may, though, three consequences stick out in my memory.
The first was the gluten-free, casien free diet. At the time, the gluten-free diet was only used for conditions like celiac disease and hypothyroidism. It wasn't a trendy diet, and it wasn't easy to find food that fit the strict requirements. "Mainstream" grocery stores didn't have a gluten-free aisle. I spent quite a bit of time eating rabbit food, and alternately being self-righteous about how "healthy" I ate and being jealous of everyone I knew. Normal kids, after all, didn't have to eat cake made out of cabbage on their birthdays.
The second consequence was the supplements. Doctor Lonsdale's theories were focused on dietary supplements; he thought that many of the ills of modern society, including teenage crime and autism, were caused by children who were getting enough calories, but not enough nutrients. Some of these supplements were fairly innocuous. Considering that I was on a milk-less diet, a calcium supplement was probably a very good idea. The regimen, however, was intense. The worst supplement was Nystatin, a bitter-tasting powder that was supposed to clean "bad bacteria" out of my guts; I also took enzymes, selenium pills, and Super-Nu-Thera, an orange pill that set off my gag reflex. By the time I stopped taking pills and supplements, I was taking easily ten pills with each meal.
The third and most far-reaching consequence was that my mother was simultaneously emboldened and made more afraid.
She was emboldened to seek out newer and even riskier treatments: chelation, hormone therapies, and larger, stranger special diets. She was emboldened to do her own research, to reject the consensus of most doctors, and to go to great lengths to get me alternative treatments. However, she did this mostly out of fear, and the fear came because she was told that she'd been lied to.
Big Pharma, Google and Doctor Lonsdale told her, was trying to hurt her children. Big Pharma and Big Agriculture were trying to poison our food and our medicine, and lied about it to get people to continue buying subpar products. Vaccines, pesticides, and processed foods were all toxic gunk, possibly made by Satan. Even dental fillings weren't safe; they contained mercury amalgams. And, these sources told her, toxins, especially mercury, were the reason I was autistic.
With so much fearmongering coming from the very same sources that promised her help, it was no wonder my mother rejected "standard" autism treatments. "Neurologists don't know what they're talking about," she reassured me. It was only a matter of time until they'd discover that my mother, and the doctors she relied on, were right, and would adopt their cures wholesale.
We still had a good way to go before I could be "cured', though. In order to really make progress, my mother thought, I'd need to undergo treatment in Florida, with Doctor Jeff Bradstreet. I'd need to have the mercury removed from my body. Then I'd be "cured" and finally be able to live a normal life. But were these treatments worth the cost?
In part two, I'll talk about the treatments I received from Doctor Bradstreet, discuss why these treatments are ineffective and even dangerous, and provide some recommendations for how to change the state of autism treatment.
What autism treatments have you tried? Were they effective for you or your loved ones?