Autism Pseudoscience in Canada: A Report and Call to Action

All across Canada, businesses are making money off of phony autism treatments that are harmful to children —with little to no regulation by our government.

We have identified 14 Ontario clinics promising to cure autism or its “symptoms” through a range of protocols including chelation; injections; off-label prescription drugs such as long-term antibiotics; herbal and vitamin supplements; medical marijuana and CBD; hyperbaric oxygen tanks; “ion cleanses”; severely restrictive diets; and other regimes that are sometimes called “biomedical treatment.” There is no medical basis for any of these programs. They are dangerous and potentially deadly to autistic children.

We are shocked that in Ontario (as in other parts of Canada) there are few regulatory measures that protect children from this —and that it is nearly impossible to get regulators to take any action towards MDs who prescribe major drugs and risky clinical procedures such as off-label chelation.

Children have died, been injured and suffer lifelong consequences from the painful and sometimes deadly regimes of “cure” culture.  The US Food and Drug Administration and the UK health regulator NHS’s “Do Not Use” guide have taken a firm stand on these treatments. The Canadian government needs to follow suit and take action on this crisis now.

What is an autism cure scam?  

In a typical autism cure scam, an MD, naturopath or online seller promises to cure or “recover” an autistic child, drawing heavily on fear and pseudoscience to mislead parents into the scam. Since there have been some lawsuits in the US, some providers now use the term eliminate the core symptoms of autism instead of cure.

Autism cure scams feed into myths about autism, such as the fear that young children will fail without radical “early intervention”; that any outcome is better than autism; and that autistics are poisoned and diseased. None of these myths have any validity or basis in science.

Some naturopaths contract with MDs to write off-label prescriptions. Other times, licensed physicians work directly at naturopathic clinics administering drugs and so-called treatments. MDs collaborating with naturopaths write prescriptions for antivirals, antifungals, long-term antibiotics, SSRIs and other medications as part of an autism treatment plan. In some cases, the naturopath or MD may add to the diagnosis (or swap out the autism diagnosis for another) using PANDAS Syndrome or even Lyme disease to justify off-label prescriptions. Increasingly, they are also recommending CBD and medical marijuana for children.

There is at least one MD in Ontario doing chelation as a so-called treatment for autism. Chelation-for-autism, which has clear evidence of harm and no evidence of benefit, is based on the false idea that heavy metals from vaccines caused a child’s autism. Since blood testing doesn’t detect a toxic amount of metal in the child (because levels are normal), doctors will claim the metals have lodged themselves in deep parts of the brain that “can’t be tested” through bloodwork. They also falsely assert that because the metals are so deeply lodged, the patients must be brought in for chelation treatments again and again.

Chelation uses a chemical to strip metal from the blood, a risky process that is normally reserved for victims of industrial accidents. But as Emily Wilmingham writes, some companies “promote chelation as an autism treatment. …One of the metals in our bodies that we need to live is calcium–for example, it keeps our hearts beating–and at least one autistic child has died during a chelation ‘treatment’ because it wiped the child’s blood of this life-supporting ion.”

Autism researchers are clear that there is no scientific validity to chelation-for-autism
and that it carries serious risk. For more information, click here, here, here, here,   here, here, here, here, here, here, here,  here, here, here, here, here, here, and here.

One of the most popular phony autism treatment is massive doses of vitamin B12, delivered via injection by the parents each morning or sometimes in the office by a naturopath or MD. These injections, which Autism Canada endorses, have no evidence of benefit and clear evidence of harm. They are often done in connection with the MAPS or DAN diet, which is a host of supplements and dietary restrictions, such as removing wheat and dairy from the diet.

Because it’s “just vitamins” or “just food,” some don’t understand the serious risks involved, which include vomiting, toxicity, allergic reaction, eating disorders such as ARFID and social isolation/exclusions of the child. The Defeat Autism Now (DAN!) Protocol is promoted on Autism Canada’s website and there are MDs practicing MAPs and DAN in across Canada. There are no restrictions or even guidelines on physicians selling supplements out of their offices or prescribing large amounts of supplements and restrictive diets for children, despite known risks.

One of the most shocking autism “cure” products is MMS, an industrial bleach marketed with the claim that feeding it to children can cure autism. A similar product is turpentine, also promoted as an autism and ADHD “cure”. Bleach and turpentine autism treatments can be deadly for a child and Health Canada has been taking action on this. Recently, a Canadian who was marketing MMS was prosecuted and convicted. Facebook, eBay and Amazon have also been working at banning sellers of MMS and the marketing of bleach and turpentine as an autism treatment in their space.

Increasingly, companies selling CBD oil, injected into gummy bears, are advertising in mom’s groups and autism groups on social media. There are also  Multi-Level Marketing (pyramid) scams online where moms are selling CBD gummy bears to other moms. There is a similar scheme for melatonin.

When MDs prescribe these phony treatments it undermines the public trust in medicine, yet professional colleges have taken no public action to stop or even to discourage it. Unlike the NHS guidelines in the UK, Ontario’s medical college (CPSO)’s complementary medicine guidelines do not list this (or any other pseudoscience treatments) as risky.

Organizations such as Talk About Curing Autism (TACA) hold conferences where vendors promote their phony autism cures to parents as “research”. Phony cures are also promoted online through many channels including Canadian websites such as Autism Canada as well as Facebook and Amazon. (Facebook and Amazon have recently made efforts to curb some autism pseudoscience).

Often, parents report that they first heard about autism pseudoscience from other parents. This means that in addition to regulation, we also need a culture shift within autism parent culture in order to stop pseudoscience.

How do autism cure scams harm children?
Autism cure regimes, supplements and restrictive diets have been shown to cause significant harm to children, both physically and emotionally. Aside from the obvious risk of protocols such as MMS and chelation, the other protocols exist on a continuum of harm. None meet any reasonable standards for health and safety of children.

Restrictive diets such as the MAPS or DAN diet specify minimal starches/ carbohydrates, depriving children of essential calories. Vitamins and mineral supplements consumed over the recommended daily allowance are known to cause toxicity. Probiotics and other supplements carry their own serious health risks for children. There is not enough study on the effects of CBD oil to determine level of harm and risk involved in its use on developing children. And all supplements, as unregulated products in Canada, have been found to be routinely mislabeled or later even removed from stores for containing unlabeled, allergenic and dangerous substances.

Those are just some of the physical risks. Now consider a child’s experience of being given a handful of horse pills and injected with vitamins by her family every morning because they have been told that she is broken and sick (when in fact she is perfectly healthy). This is a trauma for any child, with lifelong consequences.

Putting children on autism “cure” diets can be a precursor to eating disorders such as ARFID, anorexia and orthorexia. With the diet restrictions promoted at home and enforced by their family’s health providers and even at school, children have no escape from the eating disorder. Cure diets also leads to social isolation (such as the birthday party where a child is forbidden from eating cake because it will “worsen their autism”).

They also send a message to the child that being autistic (e.g., being who they are) is wrong. As Bethany Sheldahl wrote in her essay How Diets to Cure Autism Gave Me an Eating Disorder and Internalized Ableism: “It took me years to stop pathologizing myself.”

Through restrictive diets, supplements and other phony cures, the child’s bodily autonomy is violated and their health compromised by the people they are supposed to trust the most — their parents. Adding to the confusion, the child’s questions about these protocols are met with platitudes: “It’s for your own good.” Clearly, it is not.

Some friends and family may refuse to intervene to protect the child, because they think that “the parents are desperate.” But all children deserve to be safe from harm, regardless of their parents’ personal issues. With autism pseudoscience, it is the children who are the most desperate–desperate for safety, desperate to escape harm, desperate for love and acceptance. They need to be our first priority.

Who is accountable?

Our government is entrusted with protecting those most vulnerable. In this case, many of the most vulnerable are children, victims of their parents’ horribly bad judgement.

We are asking the Canadian government to develop a strategy for dealing with this problem. The current systems for reporting are inconsistent and vague. Regulation is usually left up to the professional colleges, who unfortunately do not take action on autism pseudoscience other than to defend and protect the physician or provider selling it. As long as there appears to be so little regulatory power over these products in our province (and no oversight or clear path for investigation), scammers will continue to prescribe “cures”.

We believe the College of Physicians and Surgeons (the governing body of MDs in Ontario) should be proactive in investigating medical fraud, misuse of prescription medications and all phony cures by Ontario physicians. They should revise their statement on complementary medicine to acknowledge that children cannot consent to these dangerous protocols, list them by name and ban their use by any licensed practitioner.

Parent-led autism organizations and autism charities in Ontario must also end their code of silence about pseudoscience. Autism Canada continues to list books and programs for restrictive diets and cure protocols on its website. We urge Autism Canada to take this down and we encourage its funders to demand action on this.

Last fall, the Pacific Autism Family Network (PAFN), an autism charity, hosted Holly Robinson Peete, a representative of a phony cures and antivax lobbying group Talk About Curing Autism (TACA) as a keynote speaker at their fundraising gala. PAFN is pushing to be the major consultant on the federal government’s autism plan. The Government of Canada should reconsider whether PAFN is suitable to consult or drive government-funded autism projects.

We hope that physicians, friends and family will continue to speak out about phony autism cures. If you see something, say something. Talk to parents, other providers and regulators about what can be done–and the changes that we need. If you are a physician, please read our Physician’s Guide to Autism Pseudoscience to learn more.

The UK model: protecting health and safety
In the UK, the Westminster Commission on Autism has identified problems within the reporting mechanisms (combined with lack of community awareness) and are addressing the problem.

The Government of Canada and/or provincial governments should look to the Westminster Commission’s recent report, entitled A Spectrum of Harmful Interventions for Autism for a model of how to establish a useful stakeholder consortium, research the problem and come up with solutions that include improving reporting mechanisms and developing strategies for effective public awareness.

There is no cure for autism–any more than there is a cure for being left-handed or gay. The science is clear as well that autism is not a disease to cure, it is a disability to accommodate. Also, autism is not an epidemic; the reason for increased autism diagnosis is due to a radical shift in diagnostic criteria. People selling phony cures play on fears by using terms like disease and epidemic. It’s a setup to promote their phony cure.

Autism cure scams harm us all. They are dangerous to the safety and well-being of autistic individuals. They also have a ripple effect in diminished access to services and human rights for all of us. Cure culture is at its core deeply hateful of us. It views us a problem to eradicate and a class to exclude— rather than as a part of society. Autism cure scams work against inclusion and against the broader values of our culture.

Autistic lives and wellness matter, at every age. So does the right to bodily autonomy. A4A will continue to advocate until regulators and lawmakers in Ontario establish effective processes to end autism “cure” scams. We hope you will join us in supporting this goal. Because we need more than just education: we need enforcement.

 

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