The Secretin story contains an important lesson that goes well beyond autism.
“Many families, if not the majority of families” with a child with autism spectrum disorder (ASD) “follow 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 supplements being the most commonly cited approach. Why so often? my video Alternative treatments for autism examines the problem.
“Possibly due to suspicion or distrust of standard medical practices, a desire not to drug their children, or a desire to seek remedial treatment because of frustration with deficiencies in traditional medical interventions, dietary intervention-based therapies appeal to parents children with autism as a safe, natural, and holistic approach to treating their children” — but it could also simply be because the drugs aren’t working.
“Pharmacological interventions in ASD are primarily aimed at reducing commonly associated symptoms, including inattention, impulsivity, hyperactivity, compulsions, anxiety, sleep disturbances, irritability, self-harm, and aggression” — to calm them down and help them sleep — but they have not Effect on “the core symptoms of ASD” such as social withdrawal and abnormal behavior. “Only two drugs have been approved by the U.S. Food and Drug Administration for the treatment of autism … and both target an associated behavioral 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. So it’s no surprise that parents are looking to complementary and alternative medicine (CAM) therapies to help their affected children.” Okay, but do the alternatives work better?
In the alternative medicine literature you will see a lot of this kind of attitude: Evidence schmevidence! As long as the treatment isn’t harmful, why not try it? Or go further and suggest trying a treatment despite the evidence to the contrary because – who knows? – Perhaps your children are the exception. I agree with this line of thinking. “Unfortunately, there are many unscrupulous charlatans out there out there looking to take advantage of parents who are desperate to try anything that sounds like it could help their children with autism. we [researchers] Receive multiple emails a week from practitioners offering “the cure” for autism (often for the “low, low price” of $299). We are often appalled at how these emails use guilt and deceit to encourage families to try these untested treatments, because ‘if you really loved your child, would 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 if I could help children immediately.’ 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 rigors of well-designed, double-blind, placebo-controlled clinical trials.” Our children deserve no less.
Parents try anyway, often without telling their doctors, “and find a perceived unwillingness to consider potential benefits [of alternatives] among clinicians,” which I think is because we’ve been cremated so many times. “High-profile examples of ineffective or dangerous CAM therapies led to a general distrust and dislike of anything believed to be “outside the box”.
Take the Secretin story: “Improved social and language skills” – that is, improved core autism symptoms – “following secretin administration in patients with autism spectrum disorders.” Secretin is a gut hormone involved in digestion and in used in a diagnostic test for pancreatic function. Researchers randomly ran this test on some children who happened to have autism, and to their surprise, within a few weeks of running the test, there was “a dramatic improvement in their behavior, manifested in improved eye contact, alertness, and expansion of expressive language.”
Understandably, this sparked a media frenzy, and the parents were desperate for the stuff, leading to “a black market for the drug… Of course, what makes an interesting TV show isn’t the same as good science.” ” You have to put it to the test.
A randomized controlled trial of the effects of secretin on children with autism was conducted and “no significant effects” were found. However, the study used pig secretin – pig hormones. Could human secretin work better? No, apparently not. There was also a “lack of utility” from human secretin. But as you can see below and at 4:27 in my Videothe data initially seemed to show that secretin was fully effective. One squirt of Secretin and autistic behaviors subsided in a matter of days! However, the same thing happened when the placebo was injected, which is why we conduct placebo-controlled studies.
“The widespread distribution of [those] Anecdotal reports of the benefits of secretin in treating autism may have raised expectations in parents and caregivers and influenced them to perceive improvement,” explains the effect of the placebo injection. In this way, “ineffective treatments for autism are often promoted and widely accepted,” even though there is no evidence to support this, illustrated by the fact that “most parents [in the study] remained interested in Secretin as a treatment for her child’s autism, even after we were told so [the researchers] found no evidence of benefit.” They were told it didn’t work, but just couldn’t give up hope. So the autism community pushed on and held on to the idea that it just had to work.
In the end, 16 randomized placebo-controlled trials involving more than 900 children were conducted and no benefit was found. “No study showed significantly greater improvements in measures of language, cognition, or autistic symptoms compared to placebo.”
“In the absence of effective and affordable treatments for autism, parents of children with this disorder are extremely vulnerable to extravagant claims about possible cures.” In Secretin’s case, it was like a perfect storm of factors that propagated the myth that “started a frenzy of Secretin purchases by thousands of parents, often for hundreds or even thousands of dollars a dose.” The ‘Secret Story’ illustrates the importance of subjecting proposed treatments to scientific scrutiny, rather than accepting anecdotal accounts as evidence of effectiveness.”
Sometimes alternative approaches work and sometimes they don’t. They don’t know until you put them to the test.