There are multiple recurring messages on this blog that have evolved over the years, but, if there’s one of them that has been consistent since the very beginning, it’s been about the inherent unreliability of single person testimonials. I wrote about this very topic virtually at the inception of this blog in a post that I still quote from time to time, and I wrote about it just last week when I discussed the case of a woman named Kim Tinkham, a woman who gives every indication of having died of breast cancer, a cancer that had a good chance of being cured had she only pursued effective science-based treatment when it was diagnosed. Not long after this blog started, I discovered other testimonials, testimonials that had nothing to do with cancer. These testimonials had to do with the anti-vaccine movement, and they generally involved stories of how children turned autistic virtually right after being vaccinated (Jenny McCarthy famously said that the “light went out” of her son’s eyes when he received the MMR, although she has given convlicting stories). The flip side of these stories are tales of seemingly miraculous recoveries that allegedly occurred after whatever woo du jour a parent was trying.
The reason testimonials, which are, let’s face it, simply anecdotes about one person (i.e., and N of 1) in which there are rarely any objective, properly done clinical results examine, seem so compelling to the average person is because most people don’t realize two things about the diseases and conditions for which testimonials are common. First, it’s not a coincidence that most conditions for which testimonials are used are conditions that either have a wide degree of biological variability (i.e., breast cancer) or a course that frequently varies (i.e., autism). In the case of cancer, the difference between primary treatment and adjuvant treatment is often misunderstood, wherein people who had curative surgery for their tumors are presented as though whatever quackery they tried after surgery cured them, even though it was the surgery that cured them. In the case of a condition like autism, there is often the underlying assumption that the child will never develop–would never have developed–without whatever intervention the parents subjected him to. As I’ve pointed out many times, that assumption is erroneous; autistic children can and do develop, often in fits and starts, just like other children, and sometimes they can even develop to the point of no longer meeting the criteria for autistic spectum disorders. Not surprisingly, these are the children who are often presented as “cured.” Second, most people do not understand the law of large numbers, which basically shows that coincidences are not as uncommon as people assume, simply because even seemingly unlikely coincidences can happen to thousands if you start out with numbers in the millions or tens of millions, thousands are a small percentage of that. That’s why, for a correlation between vaccines and autism to be found, it is necessary to show that there is an association between the two that is greater than what would be expected from random chance alone.
Combine all this with the fallibility of human memory, peer pressure among “curebie” groups to whom parents of autistic children often turn for advice and support, and reporters who do not understand the above problems inherent in interpreting anecdotal data any better than the average person does (or perhaps even worse), and the result is a truly atrocious news story about pure quackery, namely “stem cell” treatments for autism administered in a shady clinic in Central America. You may remember that I described this very “treatment” when Age of Autism regular Kent Heckenlively wrote about borrowing $15,000 from his daughter’s grandparents to travel to Costa Rica and have dubious “stem cells” injected directly into her cerebrospinal fluid by lumbar puncture and into her bloodstream by injection.
Daniel Faiella subjected his son Matthew to similar quackery and presenting his son as “cured.” His story begins, as so many of them do, like this:
Today, Matthew Faiella is an energetic 10 year old boy. “When I was younger, I played with toys. I watched video games, I go on the computer.” But years ago, Matthew couldn’t have told you that.
Matthew was diagnosed with autism at 18 months.His doctors thought he would eventually end up in an institution. Today, Matthew dreams of being a pediatrician.
Note how the reporter frames the story to make it sound as though the quackery to which Matthew has been subjected is the reason why he is currently doing so well. No one, least of all me, begrudges Matthew or his father their good fortune, but there’s no evidence that stem cell treatments, particularly dubious stem cell treatments in quack clinics in Central America, are likely to do anything but harm. However, let’s back up a bit; the stem cell treatments weren’t the first treatments. Like most parents, Faiella started out with less radical treatments and worked his way up:
The Faiellas tried traditional methods including the gold standard, ABA, or applied behavior analysis therapy for treating autism. “It didn’t really work for Matthew. It gave him two word sentences but that’s where it stopped.” his father Daniel tells us.
About 5 years ago, Daniel heard about a treatment involving a hyperbaric chamber. “The pressure pushes oxygen to blood plasma where oxygen doesn’t usually go.” After trying it in a local doctor’s office, he bought his own. “Within the first week he started to say full sentences.”
Three years ago, Daniel met a family who suggested stem cell transplants. “I said well, I’m against that. It’s against my religous beliefs. She said no, it’s adult stem cells and the Catholic church actually approves of it.”
Matthew will complete his 5th stem cell treatment in Panama in 2011. Even his pediatricians admit that Matthew has made tremendous strides, but Daniel is hoping for a complete cure. “I won’t be around forever to protect him. So I want him to be on a level that people wouldn’t even know he had a disability.”
While Faiella’s love for his son shines through in this account, unfortunately, the way the story is framed is as the loving father willing to do anything–and I mean anything–to “recover” his child. It’s pointed out that the hyperbaric oxygen chamber costs at least $17,000 (although in this article Faiella states that the hyperbaric chamber cost him $21,000), and that each stem cell “treatment” costs the same. Add that up, and Faiella has already spent $89,000 on a hyperbaric oxygen chamber and four stem cell treatments, and he’s ready to drop another $17,000 on a fifth one. That’s more than a cool $100,000 thus far. True, the article does mention that Matthew’s doctor doesn’t think the stem cell treatments work, but overall the story gives the impression of the heroic father fighting against an uncaring medical establishment, which, by the way, is the same impression one gets reading his blog Recovering Matthew.
Unfortunately, reading about Matthew’s story on lbrb, one finds out another reason why testimonials sound so convincing. They evolve to become so. In multiple media appearances, Faiella painted a truly grim portrait of his son’s condition at his initial diagnosis, stating that doctors thought he might have to be institutionalized, stated that his son was almost nonverbal and that he was given no hope for his son’s recovery. Yet, as the Guest Blogger pointed out, on Internet discussion forum postings, Matthew’s mother gave a very different impression. Here are two quotes, first one from when Matthew was four years old:
Matthew was diagnosed at age 20 months to have PDD/NOS. This neurologist just doesn’t seem to agree with that diagnosis at all. He says Matthew is just too different to be given that diagnosis. His is very loving, able to learn easily, is learning to read, can write beautifully, and has a great memory to the point of possible photographic memory.
Several months later:
Matthew was diagnosed as language delay at 18 months, then that diagnosis was changed to PDD-NOS at 22 months. He had the PDD/NOS label until just a short few weeks ago. […] In the end they told us that NO he is not on the spectrum. However, he does have a SEVERE receptive/expressive language disorder. […] They told me that with TONS of speech therapy he could get to be so typical that no one would know he had ever had a disorder at all.
Other excerpts indicate that Matthew was spelling and reading words by age four and that at age 6 his handwriting was advanced for his age. Moreover, there is apparently evidence that the parents went back and deleted and edited old posts after the release of their book about Matthew and his “recovery.” What the Guest Blogger leaves us with is the impression of a boy who had a learning disability and was apparently later appropriately diagnosed as being “on the spectrum” but whose language skills were actually quite good for his age five yers ago. They had been told that with lots of speech therapy Matthew could indeed develop to the point where no one would be able to tell he had a receptive/expressive disorder. The whole thing is rather muddled, but one thing isn’t: The old forum posts do not paint a picture of a nonverbal, severely autistic child, whose recovery is only recent, after the HBOT and stem cell treatments. For instance, at age five, his mom marveled at the contrast between when Matthew was diagnosed (he was nonverbal) and at age five. She even described him as a “little chatterbox.”
Testimonials, even when done with the best intentions, have a tendency to take on a life of their own. They are, all too often, the epitome of selective memory. It may not even be intentional. Human memory is incredibly fallible, never more so when the issue involved is a highly emotional one like dealing with a child with serious problems like autism. Confirmation bias leads to remembering what best fits in with one’s hopes and dreams and forgetting that which does not. Meanwhile, a story often grows with the telling, and timelines become skewed to fit that resonates emotionally. Add to that all the acclaim that comes from the “biomed” community, the attention from the media, and the seeming confirmation of the correctness of one’s choices, no matter how criticized they were at the time, and it’s not hard to understand how these stories persist and why they seem so compelling. It may not even be so difficult to understand how parents can lose their way and even forget how much progress their child has made in favor of the idealized “perfect” or “normal” child that they continue to seek. Unfortunately, the testimonials of such parents are the tools used by purveyors of unscientific “biomed” remedies to recruit the unwary.