I’ve received inquiries about my use of the terms “Track One” and “Track Two” regarding Martin’s treatment and, especially, his doctors.
As far as I can tell, mainstream medicine maintains an official position that no cure for autism exists. There are behavioral therapies that can help a child on the spectrum cope with his disorder, and there are medications that mask symptoms, but research has found no effective treatment for the root cause, it is said.
After we received Martin’s diagnosis, almost a year ago, Adrian and I took him to what I refer to in this blog as the Big Imposing Hospital, a formidable New York-area institution with a good reputation for treating ASD—although I’m no longer sure what “treating” means in this context; “diagnosing” might be the better word. In any event, we pursued every avenue that the Big Imposing Hospital requested. Under the auspices of the department of developmental neurology, Martin visited (at least once, and sometimes repeatedly) a geneticist; an endochrinologist; an ear, nose, and throat specialist; a gastroenterologist; a nutritionist; a dermatologist; and a child psychiatrist. This was the team I now call “Track One.” Before Martin was diagnosed with autism, when we were trying to get to the bottom of his inability to settle down and sleep, he also saw a specialist in pediatric sleep disorders at the Big Imposing Hospital, who misdiagnosed him with “restless leg syndrome” and prescribed iron supplements that stained his teeth.
As we began to investigate ASD recovery, we found ourselves faced with a choice. On the one hand, we had Track One, an expensive high-profile team at the Big Imposing Hospital telling us that, beyond referrals to behavioral therapy and information for us to understand ASD, they could offer nothing to help our son. On the other hand, we had Track Two, a single doctor and collection of other professionals saying, yes, we have helped children recover, and we’ll do what we can for Martin.
The choice was not as clear as it should have been. I was skeptical. As I’ve mentioned before, in this blog, it’s hard to believe that mainstream medicine could be suppressing the fact that a devastating (yes, devastating) and increasingly common condition is treatable. So I did what a skeptical person does. I asked for references. I talked to other parents. I read whatever articles I could find. And then I compromised between the two positions. Adrian and I decided to pursue Track Two, i.e., biomedical recovery, but not to abandon Track One, i.e., to continue following the recommendations of the Big Imposing Hospital—other than the recommendation not to go anywhere near a Track Two doctor.
Every Big Imposing Hospital doctor we asked told us that seeing a DAN! practitioner would be a waste of time, and potentially harmful to Martin. I took careful notes on what they said could be dangerous: vitamin B overdoses, intravenous ketology, hyperbaric chambers. Once we had started biomedical recovery (and started to see results), I gave the Track One doctors a stock response, along these lines: “My husband and I have spoken with enough families who have recovered their children that we now believe research being done in labs and studies simply has not kept up with what’s going on in the field. We would never expose our son to treatments we believe might harm him, and we research each treatment thoroughly and appropriately before proceeding.”
For the most part, once they saw I was determined, and informed, the Track One doctors stopped arguing against biomedical intervention. Some dropped the subject. Others changed their tone and spoke about “exciting possibilities” or “forging a common path” with DAN! practitioners. One doctor at the Big Imposing Hospital told me, “I’m a scientist. I require results. The results are not there to support autism recovery.” When I offered my position about studies lagging behind field work, this doctor rose from her chair, shut the door to her office, lowered her voice, and said, “Again, I’m a scientist. But I have had enough parents come through here whose children have improved with dietary changes and supplementation that I can no longer honestly say autism recovery is not possible.” Then she opened the door again.
From that moment, I’ve wondered what else mainstream practitioners are hiding, and why. As Martin has made more and more progress with his Track Two team, Track One has faded into the background for us. I’m just not sure what they can offer at this point.
(Moreover, Martin’s excellent Track Two doctor simply seems to care more about him than anyone we met at the Big Imposing Hospital. But that’s a topic for another post.)
On top of all the Track One and Track Two, Martin still sees his regular ol’ pediatrician, who’s been his doctor all along. When I told her that we were pursuing biomedical treatment of his autism (and provided all the details, supplements, and so forth), she said, “I don’t know much about it, only what I’ve heard at conferences, which is that it doesn’t work.”
I started to give my stock response. The pediatrician interrupted me with a smile. “I’ve heard that it doesn’t work,” she said. “But I’m happy to be educated otherwise.”
Medicine, like any other field, is sometimes determined by politics rather than by actual results. When I suffered from a rare condition during pregnancy, we went to a “controversial” doctor to get help. He had a track record of curing hundreds of people with my condition for over 10 years. He was considered “controversial” because he refused to participate in any blind studies (because he thought it was unethical to blindly assign patients to treatment group or control group when he believed he could cure them). Since anybody who had this condition would rather go to this doctor instead of participate in a blind study (duh!), the big university hospitals were having difficulty attracting study subjects except those who didn’t qualify for this doctor’s treatment.
Luckily, our ob/gyn had high regard for this doctor, and I was successfully treated for my condition. Years later, a professor at Yale Medical School told me that he does not send his patients to this doctor, he is a quack, his methods are unproven, etc. I was appalled to think that these poor patients were not given the proper information they need because of politics. In the meantime, a cure had been available for over a decade.
Thank you so much for posting these comments. Sometimes I feel like I must be crazy—like, how can it be that almost no one is acknowledging autism recovery. To hear a success story like yours, even in another field, really helps me keep going.
I’m impressed with the way you are persevering even with so many forces against you.
Some people might call it delusion….
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