On Unsubstantiated Yet Prevalent Therapeutic Interventions for Autism [Part II]
July 17, 2018
***Editor’s note: See part 1 of this column here for an overview of the current body of knowledge on the range of conditions classified as autism spectrum disorder (ASD), and to read about DAN! protocol, chlorine dioxide, secretin, chelation therapy, hyperbaric oxygen therapy, lupron, GcMAF, and stem cell therapy, all of which have been purported to treat or even cure autism.
Developed by late homeopath Tinus Smits, Complete Elimination of Autism Spectrum Expression, or CEASE, is homeopathy—the fantastical and thoroughly refuted notion that a substance that causes disease diluted infinitesimally can cure it— applied to autism, based solely on unsubstantiated assumptions about the condition’s cause. CEASE proponents believe that “autism is an accumulation of different causes and about 70% is due to vaccines, 25% to toxic medication and other toxic substances, 5% to some diseases. With isotherapy, ... a form of homeopathy using the causative substances themselves in homeopathic preparation, the toxic imprints can be erased.” Certified practitioners around the world administer these treatments, as described on the CEASE website:
The treatment of autistic children and even adults has matured through 300 cases taken by Dr. Tinus Smits and is called CEASE Therapy. Step by step all [assumed] causative factors (vaccines, regular medication, environmental toxic exposures, effects of illness, etc.) are cleared with the homeopathically prepared, that is diluted and potentized substances that were administered prior to the onset of autism. Currently we use the 30C, 200C, 1M and 10M potencies to clear out the energetic field of the patient from the imprint of toxic substances or diseases.
CEASE therapy was banned by the College of Naturopathic Physicians of British Columbia in May of 2018, but several certified practitioners in Canada and worldwide are listed on the CEASE website as of this article’s publication.
The Professional Standards Authority of the UK, accountable to the UK Parliament, told The Guardianin April of 2018 that it advised the UK Society of Homeopaths that “CEASE therapy contravenes medical advice by apparently advising against vaccination of children, avoiding antibiotics in the case of infection and advocates high doses of vitamins not recommended for children. We are also concerned that the full name of CEASE (Complete Elimination of Autistic Spectrum Expression) strongly implies the ability to cure autism through this therapy.”
David Gorski described additional facets of CEASE:
[W]hile Smits (well, these days Smits’ followers because apparently Smits died in 2010) is using vaccine components, medications, and various toxins all diluted to nonexistence to cure autism, he apparently also thinks that “orthomolecular medicine” needs to be used as well. Orthomolecular medicine, for those who don’t remember, is the quackery popularized by Linus Pauling that involves megadoses of vitamin C and other vitamins and nutrients This strikes me as profoundly odd. After all, homeopathy is nothing if not about, well, diluting the alleged remedy away to nonexistence. Orthomolecular quackery is about the exact opposite: Megadoses of vitamins, in particular, megadoses of vitamin C[.]
Of three naturopaths under fire for offering CEASE, two have removed their names from the website, but Victoria's Anke Zimmermann remains defiant, as CBC reported. Zimmerman told CBC that she will no longer advertise CEASE therapy, adding that "[t]t's just a particular combination of homeopathy and nutrition and I can still offer those modalities."
A technique formerly used to assist those with severe communication disabilities including autism, facilitated communication (FC), also known as hand over hand and supported typing, involves a keyboard or alphabet board, and a designated facilitator guiding the disabled person’s hand to support typing or pointing. FC was thoroughly discredited in 1994, following over 40 empirical studies between 1991 and 1994 failing to demonstrate efficacy for the technique, and showing that reported successes were due to facilitator influence (thought to be carried out subconsciously). Medical and professional associations quickly passed resolutions advising against its practice. The American Psychological Association position reads in part:
A basic premise of facilitated communication is that people with autism and moderate and profound mental retardation have "undisclosed literacy" consistent with normal intellectual functioning. Peer reviewed, scientifically based studies have found that the typed language output (represented through computers, letter boards, etc.) attributed to the clients was directed or systematically determined by the paraprofessional/professional therapists who provided facilitated assistance. (Bligh & Kupperman, 1993; Cabay, in press; Crews et al., in press; Eberlin, McConnachic, Ibel, & Volpe, 1993; Hudson, Melita, & Arnold, 1993; Klewe, 1993; Moore, Donovan, Hudson, 1993; Moore, Donovan, Hudson, Dykstra & Lawrence, 1993; Regal, Rooney, & Wandas, in press; Shane & Kearns, in press; Siegel, in press; Simon, Toll & Whitehair, in press; Szempruch & Jacobson, 1993; Vasquez, in press; Wheeler, Jacobson, Paglieri & Schwartz, 1993). Furthermore, it has not been scientifically demonstrated that the therapists are aware of their controlling influence.
Consequently, specific activities contribute immediate threats to the individual civil and human rights of the person with autism or severe mental retardation. These include use of facilitated communication as a basis for a) actions related to nonverbal accusations of abuse and mistreatment (by family members or other caregivers); b) actions related to nonverbal communications of personal preferences, self-reports about health, test and classroom performance, and family relations; c) client response in psychological assessment using standardized assessment procedures; and d) client-therapist communication in counseling or psychotherapy, taking therapeutic actions, or making differential treatment decisions.
The American Academy of Pediatrics (AAP), the American Academy of Child and Adolescent Psychiatry (AACAP), the American Speech-Language-Hearing Association (ASHA), and the International Society for Augmentative and Alternative Communication (ISAAC) also oppose FC.
Nevertheless, practitioners continue to use the technique. The Atlanticreported in 2016 that “[t]he practice retains a dedicated community of followers who have sought to prove its scientific validity as a legitimate speech-therapy technique, often using names such as rapid prompting method or “supported typing,” despite warnings by researchers such as James Todd of Eastern Michigan University and Jason Travers of the University of Kansas. And FC’s followers have found allies, such as certain staff members at the University of New Hampshire (which only recently transitioned away from the technique), the University of Northern Iowa, the Massachusetts Department of Elementary and Secondary Education, and the Vermont Department of Disabilities, Aging, and Independent Living.”
The National Council Against Health Fraud reported in May 2018 that the “Facilitated Communication Institute, which in 2010 was renamed the Institute on Communication and Inclusion, continues to promote FC despite objections from the student newspaper and some faculty members.”
Autism often comes with dietary issues, including atypical eating patterns, and restrictive aversion to certain flavors and texture—beyond typical “pickiness”—that can lead to nutritional deficiencies. Parents of autistic children report gastrointestinal distress at higher rates than children without ASD diagnosis. Though there is scant evidence to support the use of nutritional supplements or dietary therapies for ASD, many parents do report improvement in behaviors and gastrointestinal symptoms with changes in diet. But this is a far cry from the dietary interventions promoted to cure or treat autism, discussed below.
Gluten-free casein-free (GFCF) diet
The most popular evidence-scarce dietary intervention involves the complete removal of gluten, a protein found in grains such as wheat, barley, rye, and casein, a protein found in dairy products, from the diet. While there are strong anecdotal reports from parents that gluten-free casein-free (GFCF) diets greatly improve or even “cure” ASD symptoms, blinded studies show no evidence that GFCF diets lead to behavioral improvements. Though a GFCF diet pales in comparison to other quack autism therapies in terms of harm perpetuated, the strict elimination of these foods can limit an already restricted diet.
Largely following computer scientist and MIT researcher Stephanie Seneff’s claims that increased use of glyphosate, an herbicide used primarily on crops engineered to tolerate it and as a crop desiccant (with several applications outside of genetically engineered crops), will lead half of all children to be diagnosed with ASD by 2025, claims that non-GMO diets could “cure” autism began to flourish.
With her suggestion that the purported rise in autism is associated with the rise in glyphosate use, Seneff commits a classic correlation vs. causation error:
As David Gorski noted: “[I]f you look at two different variables that have shown an increase with time, you can almost always make it look as though there’s a correlation. Only occasionally does that correlation equal causation.”
This observation led to a now widely-disseminated graph pointing out that a similar correlation can be seen with the boom in organic sales and autism prevalence:
Aside from Seneff herself, the most vocal proponent of this idea is Zen Honeycutt, the founder of Moms Across America (MAA). With the slogan “Empowered moms, healthy kids,” and a mission to raise awareness about GMOs and toxic exposures, the organization peddles supplements to help “detox” customers, conducts poorly controlled experiments with questionable assays to test for glyphosate in participants’ urine and breastmilk, and promotes the idea that glyphosate causes autism. MAA published a widely-circulated, non-peer reviewed biomonitoring report in 2014 claiming that detection of relatively high glyphosate concentrations in breast milk in 3 of 10 sampled women raised a concern for bioaccumulation in breast milk, but the report has been found to be implausible in multiple peer reviewed studies .
Though the herbicide is less acutely toxic than caffeine, table salt, and some pesticides used in organic farming, and less chronically toxic than caffeine, Honeycutt insists that residues affect our gut microbiomes, which Moms Across America has linked to myriad ailments, including autism, allergies, infertility, eczema, fibromyalgia, Crohn’s Disease, childhood tantrums and pneumonia.
A massive body of evidence contradicts all of these claims. Targeting the shikimate metabolic pathway in weeds, glyphosate interferes with protein synthesis in plants, bacteria, fungi and other organisms, but not in animals. There is no evidence that glyphosate residues on food affect the shikimate pathways of bacteria in the human gut. An extensive analysis by science writer Matthew Loftus at the Credible Hulk blog pokes holes in the claim:
The claim that glyphosate harms human health via disruption of the microbiome was never a biologically plausible one, because it only makes sense when the system is not being viewed as a whole. Ironically, glyphosate and GE food opponents like to say that they take a holistic approach, but this is not a holistic argument, because it ignores the environment in which the microbiome exists.
We know that organisms don’t bother synthesizing compounds they can already get from their environment. Knocking out one step of a biochemical pathway and growing microorganisms on different media with various substrates is a tried and true classical method for identifying which substrates are involved in a given pathway and/or the enzymes which catalyze their reactions. We also know that the human gut contains abundant aromatic amino acids alleviating the need for resident microorganisms to synthesize them. Running out of them is not a concern because they are replenished multiple times per day. The exception to this would be cases of starvation or malnutrition, in which case malnutrition would be the problem to address: not glyphosate. Despite this, in vivo research has been done, and reaffirms exactly what theoretical predictions would imply. Gut microorganisms grew and replicated for hundreds of generations, thus contradicting the predictions of the hypothesis under discussion.
Featured as a guest on a 2014 episode of the Dr. Oz show, Honeycutt told an obviously embellished if not fabricated story. Her son had been experiencing “autism symptoms.” After her son’s doctor saw no reason to test for glyphosate levels, Honeycutt used a private lab which detected glyphosate levels “8 times higher than found anywhere in Europe urine testing.” She claimed that within six weeks of going “completely GMO-free and organic, his autism symptoms were gone and the level of glyphosate was no longer detectable.” Dr. Oz did not question Honeycutt’s claims.
There are several notable commentaries on a non-GMO diet to reduce autism prevalence, including an analysis at Snopes:
[D]isregarding the sloppy mathematics, the claim’s very basis (that glyphosate is the cause of a perceived increase in autism) is unsupported. No mention was made of how glyphosate was isolated and shown to be a cause (or even a factor) in some or any cases of autism in the article. No autism spikes near agricultural facilities were described, nor was any definitive causative link at all cited by the article (and presumably, Seneff) to back up the purported link between glyphosate and autism rates anywhere other than the imaginations of those making the claim. The single link of merit made within the article (to a USDA report) made absolutely no mention of autism at all but was misleadingly arranged to suggest a connection.
Novella also took on Seneff at Science Based Medicine:
Dr. Seneff gives every indication of being an anti-GMO ideologue. She is not a biologist, but rather is a computer scientist, and yet she is being presented as an expert. She has also not conducted any original research, but is spreading fears about glyphosate based on pure speculation, bad science and bad logic.
Meanwhile, numerous published systematic reviews show clear evidence that glyphosate has very low toxicity. More careful study when it comes to any agent being used as heavily as glyphosate is always welcome. Science is complicated, and it is always a good idea to consider factors that may have been previously missed. However, failure to show any adverse effect from glyphosate in epidemiological studies is very reassuring. Given its widespread use, any adverse effect must be tiny or non-existent to be missed by the evidence we have so far.
Human molecular geneticist and blogger Layla Katiraee wrote:
I think that there are very few scientists who wouldn’t give their life savings and the naming rights for their first born for the opportunity to identify an environmental cause for autism. Monsanto, Dow Agro, and Syngenta combined aren’t big enough to silence that. The reason it hasn’t been examined is far simpler: there is no likely connection based on the known comparatively benign toxic profile of glyphosate and most researchers do not want to waste their time and effort and preciously limited support dollars on a project that would most likely find no association with ASD.
And biologist and blogger Iida Ruishalme said:
The topic [of autism] is complex enough without somebody manufacturing hypothetical connections and creating more noise for the worried parents and dedicated researchers to wade through, and making strong claims without evidence and spreading them in the media like Seneff does, is very irresponsible behaviour.
Gut and Psychology Syndrome (GAPS) diet:
Another dietary “cure” that draws heavily on the gaps in microbiome science, Dr. Natasha Campbell-McBride derived the GAPS (Gut and Psychology Syndrome) protocol from the Specific Carbohydrate Diet (SCD) created by Dr. Sidney Valentine Haas to naturally treat chronic inflammatory conditions in the digestive tract as a result of a damaged gut lining. A strict elimination diet that cuts out grains, pasteurized dairy, starchy vegetables and refined carbs, it’s based on Campbell Mc-Bride’s conjecture that autism, among several other conditions, stem from an imbalance in the gut microbiome. Unlike Seneff’s claims, however, GAPS isn’t based even on flawed research—there are no published studies on the diet. Like other quackery in the autism treatment realm, GAPS is based on the flawed assumption that there is “an absolute epidemic” of autism. Campbell-McBride’s website described the GAPS diet in brief, as follows:
The GAPS protocol was designed for patients suffering from learning disabilities, psychiatric and psychological disorders, immune system problems and digestive problems
The purpose of the treatment is to detoxify the person, to lift the toxic fog off the brain to allow it to develop and function properly. In order to achieve that we need to clean up and heal the digestive tract, so it stops being the major source of toxicity in the body and becomes the source of nourishment, as it is supposed to be. As more than 90% of everything toxic floating in our blood (and getting into the brain) comes from the gut, healing it will drop the level of toxicity in the body dramatically.
This target is achieved by means of The Nutritional Programme. This programme has evolved through the personal experience of Dr. Campbell-McBride's family and clinical experience with thousands of GAPS children and adults around the world.
“Angry Chef” and author Anthony Warner isn’t a GAPs fan:
Dr Natasha is distinct from the usual clean eating loons in that she does not link her diet to vague non descript symptoms and hard to diagnose conditions. This diet is not designed to help you with fatigue, occasional headaches and the feeling of having more money than sense. Natasha is far more forthright in her claims. According to her website, the GAPS diet can be used to treat and cure ‘Autistic Spectrum Disorders, Attention Deficit Hyperactivity Disorder (ADHD/ADD), schizophrenia, dyslexia, dyspraxia, depression, obsessive–compulsive disorder, bi-polar disorder and other neuro-psychological and psychiatric problems.’ We are talking about serious conditions that require proper medical help. A line is being crossed here, a line from fad dieting into dangerous lunacy.
Retired physician and blogger Harriet Hall pointed out red flags:
There are plenty of red flags here: the “lone genius,” the “one cause” of most disease, the die-off and “wait a while and try again” explanations to keep patients on the diet when it is making them worse, the unvalidated sensitivity and diagnostic tests, the detoxification language, the bold but unsubstantiated claim of total reversal of autism, the dangerous recommendations for raw eggs, raw milk, and saturated fat and against vaccines and cholesterol testing, and more.
The autism woo world is like a quackery hydra—chop off one head and it grows back in new and ghastly form
Part of the reason that autism misinformation is so hard to counter is that the development of any child, and especially children with autism, is dynamic, as Gorski explained:
[I]t is not nearly as uncommon as parents think for children with a diagnosis of autism to improve spontaneously. Indeed, most parents think this never happens spontaneously, and that’s one (among many) reasons why they assume that whatever quackery they treat their child with must be the cause of their child’s improvement. Yet, autism is a disorder of developmental delay, not developmental stasis; autistic children can and do develop. In fact, a significant minority can even lose the diagnosis of autism or AST by age seven as they develop. As Prometheus points out, promoters of the vaccine-autism myth don’t like to hear that, mainly because it casts doubt upon whether the quackery they choose to treat their children actually does anything. After all, if autism were truly a condition of developmental stasis, then you almost wouldn’t need a control group. If an autistic child improved on a treatment, it would not be unreasonable to conclude that the treatment was beneficial. However, autism is extremely variable. Autistic children can develop, often in spurts punctuated by longer periods of apparent developmental stasis. If one of those spurts happens to occur after a new round of quackery, it’s very easy to conclude that the quackery was responsible.
The internet has not only catalyzed the proliferation and evolution of autism woo— it’s also home to untold forums where perpetrators easily prey on autistic children’s parents. These therapies don’t just cause harm with their side effects, they also impede the movement toward autism acceptance, and distract from evidence based therapies that, with timely intervention, can help autistic children learn important skills.
The FDA explains red flags to look out for with any purported treatment or cure for autism:
- Be suspicious of products that claim to treat a wide range of diseases.
- Personal testimonials are no substitute for scientific evidence.
- Few diseases or conditions can be treated quickly, so be suspicious of any therapy claimed as a “quick fix.”
- So-called “miracle cures,” which claim scientific breakthroughs or contain secret ingredients, may be a hoax.
The bottom line is this—if it’s an unproven or little known treatment, talk to your health care professional before buying or using these products.
As Alison Bernstein and Layla Katiraee note at the SciMoms blog, being armed with a few basic lines of inquiry can go a long way in avoiding autism woo:
Marketing campaigns and articles that use autism to instill fear should be regarded with caution … [T]here have been more diagnoses of autism over the years. This can be correlated with nearly anything whose use or consumption has also increased over the years: GMOs, WiFi, iPhone sales, quinoa and kale consumption, organic food sales, etc. When reading such articles, focus on the data beyond the correlation: is there any evidence to support that one actually causes the other? Who are they interviewing? Is there a reputable medical organization that is supporting the arguments in the article?
If I’ve learned one thing from doing a deep dive into the world of autism woo, it’s that it’s virtually infinite—even as one so-called cure or treatment is exposed as quackery, another pops up like a tragic game of whack-a-mole. As with any form of BS, arming ourselves with a misinformation radar is crucial in the fight to protect autistic children and promote acceptance.