NOTE: We have split our UN report on Human Rights for Autistics in Ontario into sections and are blogging them. This section is about the impact of autism pseudoscience on children in Ontario.
Medical settings: Autism pseudoscience and proxy consent
Lax notions of proxy consent are not just a problem in Ontario schools; they also have devastating consequences for autistic children whose parents invest in “biomedical treatments”, otherwise known as autism pseudoscience. These businesses claim to “cure” autism or “recover” autistic children through unproven and often risky procedures and diets.
Autism pseudoscience flourishes in Ontario due to a lack of regulation of both proxy consent and complementary medicine. In our province, minors do not have consent rights in their health care; parents are legally allowed to proxy consent to any “medical” procedure on their children. Since there is almost no regulation of biomedical “cures” for autism (even those that are risky or life-threatening), this creates an especially unsafe environment for autistic children.
Autistic and disabled children’s rights to appropriate health care, safety and comfort are being routinely violated here with little to no legal repercussions for the clinics that promise the false cures.
As the Westminster Commission on Autism (UK) writes in its report recommending improved policy and practice on autism pseudoscience: “Healthcare fraud is big business and autism is one of its many targets.” Biomedical autism treatments do not have any positive effect on autistic children and there is no medical basis for any of them. They are dangerous and potentially deadly to autistic children. They cause psychological damage, including PTSD, to the children who are forced to endure them.
Also, the myth that autism can be removed from a child leaves no room for parents to accept their child for who they are. A child who is being told they will be “detoxed” until no longer autistic, is not given the opportunity for healthy self-acceptance. When the miracle cure doesn’t arrive, it can have devastating consequences for the child and for the family relationship.
Examples of biomedical “treatments” offered in Canadian clinics include chelation (the removal of essential minerals and metals from the blood); injections and vitamin IV drips; off-label prescription drugs such as long-term antibiotics and antifungals (32 clinics in Canada); chemical castration; phony “stem cell” treatment (24 clinics in Ontario); herbal and vitamin supplements; hyperbaric oxygen tanks; “gene therapy”; bleach enemas (MMS); severely restrictive diets; “translational therapy”; and other regimes that are sometimes called biomedical treatment.
Other than MMS, which Health Canada is cracking down on, none of the other treatments are regulated. Anyone can practice them on a child of any age and the government will not generally take action.
This year, when a parent complained about an MD performing chelation on autistic toddlers in Ontario, her concerns were turned away by the College of Physicians and Surgeons of Ontario (CPSO), the regulating body of physicians in Ontario. Despite being given data on the risk-benefit ratio of chelation for autism, the CPSO rejected her complaint and took no action, indicating that it accepts proxy consent despite safety concerns.
She had shared with them a case where a child had died from chelation for autism; a case that has inspired the UK to reform its regulatory system. Nevertheless, in a letter to the mom, the CPSO gave its endorsement for chelation to be performed on autistic children, stating that chelation for autism was a “valuable and evidence based” form of complementary medicine.
The fact that some autistic children in Ontario are treated like guinea pigs in biomedical experiments –and that this was recently endorsed by a professional regulating body– is extremely alarming and demonstrates the need for provincial and federal oversight into autism pseudoscience. Policymakers must reconsider our province’s overly-broad definition of proxy consent, in the interest of child health and safety.
As it stands, in our view there is a two-tiered system of risk management within children’s medical care in Ontario, where it is acceptable for a provider to do things to autistic children that regulators would not allow to be done to neurotypical children. We will discuss this below as well in the context of more traditional care.