This sounds like science:
TThe problem with unproven treatments is that they sound scientific.
Take, for example, single-photon emission computed tomography, or SPECT. For around $3,500, Amen Clinics – brain health centers named in honor of founder and Dr. Daniel G. Amen – will scan a child’s brain to make an autism diagnosis and create targeted treatments. “We use SPECT scans and clinical data to make diagnoses,” says Amen, adding that the clinics have scanned more than 1,000 autistic people.
Autism experts interviewed for this article say these tests are far from being — and may never be — ready to be used to diagnose autism. Some say it’s more of a sleight of hand. “These extremely expensive ‘assessments,’ which are almost never covered by insurance, are best described as a scam perpetrated against families prey to false hope,” says Columbia’s Veenstra-VanderWeele. Brain scans cannot reveal autism, because researchers have not yet definitively identified patterns or structures of brain activity specific to autism. And scans certainly can’t indicate which treatment would work.
For most parents, who have little understanding of how the science is done, wading through claims about alternative treatments can be confusing. Even when someone knows how to look PubMed, an online database of journal abstracts, she may not understand that obscure journals tend not to be taken seriously and may not understand the difference between study types. A case report involving a single child may be of purely scientific interest as a line of further investigation, for example, while the results of a rigorous randomized controlled clinical trial with a large number of participants may provide robust information on the effectiveness of a treatment.
Additionally, the media often exaggerate the importance of the results. Take secretin, a peptide hormone that stimulates the pancreas to secrete digestive fluids. In the late 1990s, three autistic children were reportedly dramatic improvement after taking secretin. Word spread, parents heard about it on the news, and demand for secretin skyrocketed. But more than a dozen subsequent double-blind studies — in which neither families nor researchers knew which participants were in the placebo group — found no evidence of effectiveness.
“As a scientist, you can find yourself on the front page of the New York Times science section with a new link to autism, without really knowing if it’s causal,” says Catherine Lord, a clinical psychologist who directs the Center for Autism and Brain Development at New York-Presbyterian Hospital in New York. In other words, just because researchers discover a link between autism and a gene or other factor doesn’t mean it causes the disease — or that blocking it can reverse the effects of autism. “I think it’s probably very confusing for parents. So when someone says, “I can take what that scientist said and make it make sense to you right now,” that’s incredibly appealing.
At AutismOne At this year’s Chicago conference, more than 150 practitioners and company representatives presented their therapies to hundreds of attendees in discussions modeled on scientific presentations. Several presentations focused on the gut microbiome, reflecting findings suggesting that disturbances of intestinal microorganisms cause the gastrointestinal problems that afflict many autistic children. At last year’s conference, a doctor named Zach Bush explained, using slides of intestine viewed under a microscope as a visual aid, how his plant-based mineral supplement, RESTORE ($49.95 for one month supply), strengthens the cell membranes of the intestine. to prevent toxins from escaping. Bush told parents in the audience that he was “thrilled to just be a piece of your puzzle” in parents’ quest to “bring this child back to health.” The company did not respond to multiple requests for comment.
The connection with the microbiome is actually being studied by several respected research groups. One hypothesis being explored is that disruption of intestinal microorganisms causes a “leaky gut” which allows bacteria to escape into the body, impairing brain function and contributing to autistic behaviors.
But promises like Bush’s are far ahead of research, says Ruth Ann Luna, director of medical metagenomics at the Texas Children’s Microbiome Center in Houston. “Currently, we are trying to characterize the gut biome of autistic children who have significant gastrointestinal issues,” she says. This could help pave the way for treating people with both autism and gut problems. It’s intriguing line of inquirybut RESTORE and probiotic drinks marketed as treatments for autism are not yet supported by research.
An even more aggressive approach, Luna says, is for parents to perform fecal microbiota transplants at home — although these transplants are worth studying in clinical trials, she says. These parents mix a stool sample from a neurotypical family member with saline, strain the concoction, then give the resulting liquid via enema to an autistic child. Instructions are readily available on YouTube. “It’s very experimental and certainly risky to go without a doctor’s supervision,” she says.
When unproven treatments target the same links to autism explored in serious research, it is even more difficult for parents to evaluate these claims. “These so-called ‘experts’ are so confident and seem so convincing,” Zurcher says.
Someone searching for information, for example, on toxins that may be linked to autism might come across “AMD IonCleanse for ASD» Facebook group, where more than 3,300 members exchange information about a foot bath made by a company called AMD. “As children’s bodies begin to detoxify, systems that were energetically blocked or shut down can begin to function normally,” the report explains. AMD website said.
“We don’t claim to treat autism,” says owner Neill Moroney, who estimates that 1,000 to 1,100 autistic people have used the $1,995 foot bath. Moroney says he would like to conduct a blinded trial with 30 children for 90 days to determine whether the gadget actually alleviates autism symptoms. But he says funding is hard to come by. “What I’m looking for is someone who has the resources to give him the chance he deserves,” he says.
