All across the province of Ontario, 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; chemical castration; herbal and vitamin supplements; hyperbaric oxygen tanks; severely restrictive diets; and other regimes that are sometimes called “biomedical treatment.” There is no medical basis for any of these programs. Further, they are dangerous and potentially deadly to autistic children.
We are shocked that in Ontario there are few regulatory measures that protect children from this —and that it is nearly impossible even to censure MDs who prescribe major drugs and risky clinical treatments (such as chelation) for off-label use that claims to treat autism.
Meanwhile, children have died, been injured and suffer lifelong consequences from the painful and sometimes deadly regimes of “cure” culture. The Ontario government and other regulating bodies need to take action on this crisis now.
What is an autism cure scam? How does it work in Ontario?
In a typical cure scam, a doctor or a naturopath promises to cure or “recover” an autistic child, drawing heavily on pseudoscience to mislead the parents into the scam. The 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 Ontario naturopaths contract with MDs to write off-label prescriptions; other times, licensed physicians work directly at naturopathic clinics administering drugs and so-called treatments. Prescriptions are given for the use of antivirals, antifungals, long-term antibiotics, SSRIs and other medications as part of an autism treatment plan. The naturopath or MD may also swap out the autism diagnosis for another (such as PANDAS Syndrome or even Lyme disease) to justify prescription use.
There is at least one MD in Ontario doing chelation as an autism “cure”. Chelation is the process of using 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. It is not one. 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.
Naturopaths also prescribe “cures” such as MMS, an industrial bleach, claiming that feeding it to children can “clean their gut”. Another popular treatment is massive doses of B12, delivered via injection by the parents each morning, combined with a host of supplements and dietary restrictions that make up the so-called Defeat Autism Now (DAN!) Protocol.
A recently proposed autism centre in Hamilton touting the use of “detoxification methods”, restrictive diets and in-patient programs for children has drawn concern from local residents as well as the Government of Ontario. We share those concerns and hope the government will take swift action to investigate.
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 any “detoxication” protocol such as MMS and chelation, the other protocols exist on a continuum of harm.
For example, many restrictive diets such as the 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. And all supplements, as unregulated products in Canada, have been found to be routinely mislabeled or later even removed from stores for containing unlabeled and dangerous substances.
Those are just the physical consequences. 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 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. It leads to social isolation (such as the birthday party where a child is forbidden from eating cake because it will “worsen their autism”). Restrictive diets 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 diet and vitamin regimes, 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 gaslighting platitudes: “It’s for your own good.” Clearly, it is not.
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. Thus, we call on Health Canada to continue their research into better labeling of health claims on supplements and its other regulatory practices. As well, an official statement from Health Canada condemning pseudoscience would be useful towards educating parents and the broader public about autism cure scams.
We also call on the Ontario government to develop a strategy for dealing with this problem. The province’s current system for reporting is inconsistent and vague. There are no official complaint procedures and the complaints that do get through tend to get kicked from one Ministry/agency to another. As long as there appears to be so little regulatory power over these products in our province (or even a path for investigation), scammers will continue to prescribe “cures”. The Ontario government needs to develop a clearer path for reporting pseudoscience to regulators and post it on their website.
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 autism “cure” or “DAN!” programs run by Ontario physicians. They should revise their statement on so-called complementary medicine to acknowledge that children cannot consent to these dangerous protocols –and when parents are using these products on children, it is no longer an issue of “client choice”. As health care providers, the CPSO needs to better protect children through proactive oversight of its practitioners. (Unfortunately, the CPSO continues to endorse pseudoscience instead.)
Parent-led organizations in Ontario must end their code of silence about pseudoscience. For example, the websites of both Autism Canada and Autism $peaks Canada have extensive lists promoting how-to books and programs for restrictive diets and cure protocols. No amount of fine-print disclaimers can erase the fact that posting this information online is a form of endorsement.
Parents also are accountable for their choices. A reminder: there are many parents who say no to cure culture. It is not a function of the parenting impulse to engage in these treatments. Rather, it is a symptom of a broader social problem: the pathologization of autism as an “epidemic” to “cure”.
Silence is not an option. We urge allies to speak out if they hear about bogus cures and pseudoscience from family or friends. Demand accountability and a true system in our government for regulation and reporting. If you are not part of the solution, you are a part of the problem.
Conclusion: What can be done?
For an excellent example of health care, government and patient advocacy groups all collaborating in establishing reasonable standards of care (while raising awareness), see the Westminster Commission on Autism (UK). The Commission has identified the problem as within the reporting mechanisms (combined with lack of community awareness and) are tackling the issue head-on.
The Government of Canada and/or provincial governments could look to the Westminster Commission’s work in progress, as well as their 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 and there never will be. Scientifically speaking, autism is not a disease, any more than being left-handed is a disease. Historically speaking, autistic people have always been a rich and diverse part of the human fabric. The reason for increased autism diagnosis is due to a radical shift in diagnostic criteria, not an imagined “epidemic”. Efforts to cure an autistic person are not only pointless, they are painful and often dangerous to the safety and well-being of all autistics.
Cure culture, whether in the form of pills, so-called treatments or behaviour therapy has no place in an inclusive society. In addition to their impact on the direct victims (the children), cure schemes have a ripple effect in diminished access to services and human rights for all of us. When parents talk about “curing” an “epidemic,” autistics are seen as a problem to eradicate and a class to exclude— rather than as a part of society. We continue to face discrimination, exclusion and abuse, all made worse by cure 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. Because we need more than just education: we need enforcement.