The secret story holds an important lesson that extends far beyond autism.
“Many families, if not a majority of families” with a child suffering from autism spectrum disorder (ASD) “pursue dietary and nutritional approaches as components of treatment. Estimates of the use of alternative therapies range from 28 to 95 percent, with special diets or dietary supplements the most frequently cited approach. Why so common? Myvideo Alternative Treatments for Autism explores the issue.
“Perhaps acting on suspicion or distrust of standard medical practices, a desire not to have their children ‘drugged’ or the desire to seek curative treatment because of the frustration with deficiencies in traditional medical interventions, therapies based on dietary interventions appeal to parents of children with autism as more safe, natural, and holistic approaches to treating their children”—but it also could be simply because the drugs don’t work.
“Pharmacological interventions in ASD are mainly aimed to reduce commonly associated symptoms, including inattention, impulsivity, hyperactivity, compulsions, anxiety, sleep disturbances, irritability, self-injury, and aggression”—calm them down and help them sleep—but they have no effect on “the core symptoms of ASD,” like the social withdrawal and abnormal behaviors. “Only two drugs have been approved by the US Food and Drug Administration for the treatment of autism…and both target an associated behavior problem, irritability, rather than the core deficits in social skills and repetitive behavior. Both drugs also have significant side effects, including weight gain and sedation. It’s no surprise, therefore, that parents seek complementary and alternative medicine (CAM) therapies to try to help their affected children.” Okay, but do the alternatives work any better?
In the alternative medicine literature, you’ll see a lot of this kind of attitude: Evidence schmevidence! As long as the treatment isn’t harmful, why not give it a try? Or, going even further to suggest trying a treatment even if the evidence is stacked against it, because—who knows?—maybe your kids are the exception. I’m sympathetic to that thinking. “Unfortunately, there are many unscrupulous charlatans who are eager to take advantage of parents desperate to try anything that sounds like it might help their children with autism. we [researchers] receive several emails a week from practitioners offering ‘the cure’ for autism (often for the ‘low, low price’ of $299). We are often horrified at how these emails use guilt and guile to encourage families to try these untested treatments because ‘if you really loved your child, wouldn’t you want to leave no stone unturned?’”
When challenged, “many practitioners of these supposed cures will say things like ‘I know it works,’ ‘I’ve seen it work,’ or ‘I don’t want to spend time and money testing it when I could be helping children right away.’ we [researchers] urge parents to run, not walk, away from any treatment that claims to be too good for science.” Indeed, “all treatments should be subjected to the rigor of well-designed, double-blind, placebo-controlled clinical trials.” Our children deserve no less.
Parents try them anyway, often without even telling their physicians, “noting a perceived unwillingness to consider potential benefits [of alternatives] among clinicians,” which I think arises because we’ve been burned so many times before. “High-profile examples of ineffective or dangerous CAM therapies led to a general mistrust of and distaste for anything believed to be” outside the box.
Take the secretin story: “Improved social and language skills”—that is, improved core autism symptoms—”after secretin administration in patients with autistic spectrum disorders.” Secretin is a gut hormone involved in digestion and used in a diagnostic test for pancreatic function. Researchers just happened to be doing this test on some children who just happened to have autism, and, to their surprise, within weeks of administering the test, there was “dramatic improvement in their behavior, manifested by improved eye contact, alertness, and expansion of expressive language.”
Understandably, this sparked a media “frenzy,” and parents scrambled to find the stuff, which “led to a black market for the drug…What makes an interesting television program may not, of course, be the same as what makes good science. ” You’ve got to put it to the test.
A randomized controlled trial on the effect of secretin on children with autism was done, and “no significant effects” were found. The study used porcine secretin, though—pig hormones. Might human secretin would work better? No, apparently not. There was a “lack of benefit” from human secretin, too. But, as you can see below and at 4:27 in my Video, the data initially appeared to show that secretin totally worked. One shot of secretin, and autism behaviors dropped within days! The same thing happened when the placebo was injected, though, which is why we do placebo-controlled studies.
“The widespread circulation of [those] anecdotal reports of the benefits of secretin in the treatment of autism may have raised expectations among parents and care providers and biased them toward perceiving improvement,” explaining the effects of the placebo injection. In this way, “ineffective treatments for autism are often promoted and widely accepted” even if there’s no evidence to back them up, exemplified by the fact that “most parents [in the study] Remained interested in secretin as a form of treatment for their child’s autism even after being told that we [the researchers] found no evidence of benefit.” They were told it didn’t work, but they just couldn’t give up hope. So, the autism community continued to press and clung to the thought that it just has to work.
In the end, 16 randomized placebo-controlled trials were performed involving more than 900 children, and no evidence of benefit was found. “No studies revealed significantly greater improvements in measures of language, cognition, or autistic symptoms when compared with placebo.”
“In the absence of effective and affordable treatments for autism, parents of children with this disorder are extremely vulnerable to extravagant claims of potential cures.” In the case of secretin, it was like a perfect storm of factors that propagated the myth, which “prompted a frenzy of secretin purchases by thousands of parents, often at hundreds or even thousands of dollars per dose. The ‘secretin story’ exemplifies the importance of subjecting proposed treatments to scientific scrutiny in contrast to accepting anecdotal reports as proof of efficacy.”
Sometimes alternative approaches work, and sometimes they don’t. You don’t know until you put them to the test.