Alternative Treatments for Autism

Alternative Treatments for Autism
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The secretin story holds an important lesson that extends far beyond autism.

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Below is an approximation of this video’s audio content. To see any graphs, charts, graphics, images, and quotes to which Dr. Greger may be referring, watch the above video.

“Many…, if not [the] majority of families [with a child suffering from autism] pursue dietary and nutritional approaches as components of treatment.” Estimates of the use of alternative therapies “range from 28 to 95%,” with “special diets or dietary supplements” the most frequently cited approach. Why so common?

“Perhaps [parents are] acting on suspicion or distrust of standard medical practices, [or] a desire not to have their children ‘drugged,’ considering alternative approaches “more safe, natural, and holistic.” But, it also could simply be because the drugs don’t work.

“Pharmacological interventions in [autism] are mainly aimed [at reducing]…associated symptoms”—calm them down, help them sleep—but have no effect on “the core symptoms” of ASD [autism spectrum disorders], like the social withdrawal, abnormal behaviors. “Only two drugs have been approved…for the treatment of autism…and both [just] target an associated [symptom]—irritability, rather than the core deficits [of the disorder]. Both drugs also have significant side effects, including weight gain and sedation. It’s no surprise, [then], that parents seek…alternative…therapies.” 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, even going further, to suggest trying a treatment even if the evidence is stacked against it, because hey, maybe your kids are the exception. I’m sympathetic to that thinking. “Unfortunately, there are many unscrupulous charlatans [out there] eager to take advantage of parents desperate to try anything that sounds like it might help.” These researchers report receiving “several emails a week from practitioners offering ‘the cure’ for autism—often for the ‘low, low price’ of $299,” reporting, to their horror, how “these emails use guilt and guile to [manipulate] families…: “If you really loved your child, wouldn’t you want to leave no stone unturned?”

When challenged, “[m]any [such] 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 it could be helping children right away!’ [The researchers] urge parents to run, not walk, away from any treatment that claims to be too good for science. 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 [among doctors] to [even] consider potential benefits” of alternatives, which I think arises because we’ve been burned so many times before. “[H]igh-profile examples of ineffective or [even] dangerous [complementary and alternative therapies have] 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”—improved core autism symptoms—after secretin administration.” Secretin is a gut hormone involved in digestion. It’s used in a diagnostic test for pancreatic function. So, they were just doing this test on some children who just happened to have autism, and, to their surprise, within weeks of administering the test, there “was a dramatic improvement in the [children’s] behavior,…improved eye contact, alertness, and language.”       

Understandably, this sparked a media frenzy; parents scrambled to find the stuff, leading “to a black market for the drug.” But: “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” and…”no significant effects” were found, though the study used “porcine secretin,” pig hormones. Maybe human secretin would work better? And, the answer is…no, apparently not. “Lack of benefit” from human secretin, too. But, no—look at the data, secretin totally worked. One shot of secretin, and autism behaviors dropped within days! But, the same thing happened injecting nothing, injecting saline, injecting water. That’s why we do placebo-controlled studies.

“The widespread circulation of anecdotal reports of the [miraculous] benefits of secretin…may have raised expectations [so much that it] biased [parents into] perceiving improvement, explaining the effects of the placebo injection. In this way, “ineffective treatments” can become “widely accepted,” even if there’s no evidence to back them up, exemplified by the fact that “most parents [in the study still] remained interested in secretin even after being told [that it didn’t work].” They just couldn’t give up hope. So, the autism community continued to press—it’s just got to work.

In the end, 16 randomized, placebo-controlled trials were performed involving more than 900 children, and “no evidence” of benefit was found. “[None of the] studies revealed significantly greater improvements in measures of language, cognition, or autistic symptoms when compared [to pretending to give the kids drugs but actually giving them nothing at all].”

“In the absence of effective and affordable treatments for autism, parents of children with the 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, prompting “a frenzy of secretin purchases by thousands of parents, often at hundreds or even thousands of dollars per dose.” The ‘secretin story’ shows [why it’s so important to subject] proposed treatments to scientific scrutiny, instead of [just] accepting anecdotal reports as proof.”

Please consider volunteering to help out on the site.

Image credit: Pexels via Pixabay. Image has been modified.

Motion graphics by Avocado Video.

Below is an approximation of this video’s audio content. To see any graphs, charts, graphics, images, and quotes to which Dr. Greger may be referring, watch the above video.

“Many…, if not [the] majority of families [with a child suffering from autism] pursue dietary and nutritional approaches as components of treatment.” Estimates of the use of alternative therapies “range from 28 to 95%,” with “special diets or dietary supplements” the most frequently cited approach. Why so common?

“Perhaps [parents are] acting on suspicion or distrust of standard medical practices, [or] a desire not to have their children ‘drugged,’ considering alternative approaches “more safe, natural, and holistic.” But, it also could simply be because the drugs don’t work.

“Pharmacological interventions in [autism] are mainly aimed [at reducing]…associated symptoms”—calm them down, help them sleep—but have no effect on “the core symptoms” of ASD [autism spectrum disorders], like the social withdrawal, abnormal behaviors. “Only two drugs have been approved…for the treatment of autism…and both [just] target an associated [symptom]—irritability, rather than the core deficits [of the disorder]. Both drugs also have significant side effects, including weight gain and sedation. It’s no surprise, [then], that parents seek…alternative…therapies.” 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, even going further, to suggest trying a treatment even if the evidence is stacked against it, because hey, maybe your kids are the exception. I’m sympathetic to that thinking. “Unfortunately, there are many unscrupulous charlatans [out there] eager to take advantage of parents desperate to try anything that sounds like it might help.” These researchers report receiving “several emails a week from practitioners offering ‘the cure’ for autism—often for the ‘low, low price’ of $299,” reporting, to their horror, how “these emails use guilt and guile to [manipulate] families…: “If you really loved your child, wouldn’t you want to leave no stone unturned?”

When challenged, “[m]any [such] 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 it could be helping children right away!’ [The researchers] urge parents to run, not walk, away from any treatment that claims to be too good for science. 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 [among doctors] to [even] consider potential benefits” of alternatives, which I think arises because we’ve been burned so many times before. “[H]igh-profile examples of ineffective or [even] dangerous [complementary and alternative therapies have] 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”—improved core autism symptoms—after secretin administration.” Secretin is a gut hormone involved in digestion. It’s used in a diagnostic test for pancreatic function. So, they were just doing this test on some children who just happened to have autism, and, to their surprise, within weeks of administering the test, there “was a dramatic improvement in the [children’s] behavior,…improved eye contact, alertness, and language.”       

Understandably, this sparked a media frenzy; parents scrambled to find the stuff, leading “to a black market for the drug.” But: “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” and…”no significant effects” were found, though the study used “porcine secretin,” pig hormones. Maybe human secretin would work better? And, the answer is…no, apparently not. “Lack of benefit” from human secretin, too. But, no—look at the data, secretin totally worked. One shot of secretin, and autism behaviors dropped within days! But, the same thing happened injecting nothing, injecting saline, injecting water. That’s why we do placebo-controlled studies.

“The widespread circulation of anecdotal reports of the [miraculous] benefits of secretin…may have raised expectations [so much that it] biased [parents into] perceiving improvement, explaining the effects of the placebo injection. In this way, “ineffective treatments” can become “widely accepted,” even if there’s no evidence to back them up, exemplified by the fact that “most parents [in the study still] remained interested in secretin even after being told [that it didn’t work].” They just couldn’t give up hope. So, the autism community continued to press—it’s just got to work.

In the end, 16 randomized, placebo-controlled trials were performed involving more than 900 children, and “no evidence” of benefit was found. “[None of the] studies revealed significantly greater improvements in measures of language, cognition, or autistic symptoms when compared [to pretending to give the kids drugs but actually giving them nothing at all].”

“In the absence of effective and affordable treatments for autism, parents of children with the 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, prompting “a frenzy of secretin purchases by thousands of parents, often at hundreds or even thousands of dollars per dose.” The ‘secretin story’ shows [why it’s so important to subject] proposed treatments to scientific scrutiny, instead of [just] accepting anecdotal reports as proof.”

Please consider volunteering to help out on the site.

Image credit: Pexels via Pixabay. Image has been modified.

Motion graphics by Avocado Video.

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