by A4A Ontario
Print version: Physician’s Guide to autism pseudoscience
When a parent tries to “cure” their autistic child with pseudoscience, they are physically and psychologically harming their child. Regardless of the parents’ intentions, that is the result.
We are reaching out to you, as physicians, to help protect autistic children. You are often one of the first points of contact for families in crisis. You have influence and can take action to protect the health and safety of children.
In this paper, we discuss:
- the impact of autism pseudoscience;
- how to detect it;
- how you can respond in your practice; and
- other actions to protect children.
The Lifelong Impact of Autism Pseudoscience
Autism pseudoscience is very common — and it is big business. Parents have spent millions on unproven autism treatments such as gene therapy, hyperbaric oxygen therapy, chelation for autism, MMS, DAN/MAPS diets and off-label CBD and medical marijuana. The supplement industry promotes hundreds of supplements “for autism” and some providers sell these out of their offices, taking a commission from manufacturers. Other times, parents buy phony products online or may travel as medical tourists for so-called treatments.
Let’s be clear: No autistic child or adult wants to undergo a phony autism treatment. These treatments are frightening, painful and emotionally devastating. They are also often physically risky or harmful. Some children have died from treatments such as MMS and chelation-for-autism.
At A4A, some of us are survivors of these treatment scams, enduring years of our parents’ senseless rituals around food, “biomedicine,” drugs and other bogus treatments to supposedly cure us –of being ourselves.
Far from being positive, the results were: PTSD; fear of medical providers; eating disorders; low self-esteem; inability to trust; identity issues; broken family relationships and more. Some of us had to walk on eggshells at home for fear of more painful treatments.
When parents choose pseudoscience, it also often replaces crucial, legitimate therapy for their kids. For example, a psychotherapist recently told A4A that her client’s family discontinued essential therapy services because their alternative to psychotherapy was to take their son chelation therapy.
Survivors’ lived experiences show that adults who spoke up against a parent’s use of autism pseudoscience sent an important message to the child that this is not okay. By contrast, when adults/providers were silent about it, survivors received the message that other adults think this is fine and no one will help me.
If you encounter families who are using autism pseudoscience, it is important to say something. There are also other steps you can take to intervene.
Recognizing Autism Pseudoscience
Identifying the Terminology. Autism pseudoscience sellers aren’t allowed to use the word cure in their marketing materials, so they’ve developed euphemisms for the cure promise. Parents pick up on these terms. Be aware if parents are using terms like:
- “recovery from autism”
- “addressing the core symptoms of autism”
- “biomedical approach”
- “parasite removal”
- “healing protocol”
- “restoring neuroimmune levels”
Other Signs. The Westminster Commission on Autism has authored a report on autism pseudoscience that outlines the problem and identifies some signs of a practitioner selling pseudoscience, including:
- Relying on anecdotal evidence/testimonials;
- Dismissing scientific views on the condition;
- Offering one cure for a broad range of conditions;
- Inventing new conditions;
- Telling patients they “have to believe” for it to work;
- The product is expensive and therapist gets financial gain from each product sold; and
- The therapy can be administered by someone with no medical qualifications.
Off-label use of prescription products is another warning sign.
- present with a completely healthy child, but insist their child needs medicine;
- attribute developmentally-normal behaviours (such as excitement, fears, rebellion or night waking) to an imagined illness;
- perceive autism itself as an illness or a toxin;
- have a pattern of provider-shopping;
- claim their child has other conditions such as “PANDAS” or “chronic Lyme”;
- refer to their child’s personality traits/interests as “behaviours”;
- claim that there is a cure for autism.
The child may:
- seem afraid to express/speak;
- be unwilling to contradict the parent;
- repeat the same jargon as the parent;
- not have his or her AAC device available because the parent did not bring it;
- show a trauma response when the topic of the treatment is brought up.
Taking Action in the Clinical Setting
The two types of consent. When you meet an adult patient using pseudoscience to treat their own conditions, you may decide in that it is reasonable to take a caveat emptor approach; that the patient has decision-making power, even when it may not appear to be in the patient’s best interest. That is because the patient is consenting to their own treatment.
With autism pseudoscience, this same approach is not appropriate –because the child is the patient and the child cannot give informed consent. Parents are proxy-consenting for their children, who do not want these treatments.
As a primary provider, you have an opportunity to intervene. Here are some strategies:
Define the patient
Make it clear at appointments that you value and acknowledge the needs of your patient.
- Speak directly to your patient by name;
- If your patient is non-speaking, ask the parents to bring along your patient’s AAC communication so he or she can communicate directly;
- Always assume your patient is listening. Even if they are missing some of the details, they are perceiving the tone around these subjects;
- Redirect from talking about your patient. Example: if a parent complains to you about their child having trouble sleeping, turn and ask your patient, “How are you feeling at bedtime these days?”;
- If a parent mentions a pseudoscience treatment, let them know about any potential harm associated with the treatment and that you’re concerned about its impact on your patient.
- Keep track of any missed appointments and ensure that your patient sees you regularly. Children whose families have dropped out of the system are more vulnerable to medical abuse.
- Consider referring your patient to an expert such as a speech language pathologist or psychotherapist who can monitor and forward notes to you.
- Stay calm about autism. Many parents report that they were frightened when providers talked about a “narrow window for early intervention” and felt like they had to try everything on their autistic child (including pseudoscience) before it was too late.
- People make bad decisions when they panic. If you sense that a parent is panicking, provide resources on autism acceptance and autism throughout the life span. Provide written information and links. Don’t let them walk away empty-handed.
- Use the EGRIP strategy. This article by Gleb Tsipursky for Scientific American is a great starting point in applying the EGRIP strategy in practice.
There is Canadian precedent for adults to step forward and protect the health rights of children. Medical neglect is included in reporting requirements for suspected child abuse. There are also mandatory reporting requirements of teachers and providers who become aware that a child is going to be sent abroad to undergo procedures that are illegal in Canada, for example, “gene therapy” for autism.
If you are unsure whether or how to report suspected medical abuse, ask a social worker or other professional at your clinic. If you do not know who to consult, contact us and we can connect you.
The Situation in Ontario
Autism pseudoscience is prevalent across Ontario. We have identified 14 Ontario clinics promising to treat autism through a range of protocols including chelation; vitamin injections; off-label prescription drugs such as long-term antibiotics; bleach enemas (MMS Miracle Solution); chemical castration; herbal and vitamin supplements; hyperbaric oxygen tanks; severely restrictive diets; and other protocols.
In Ontario, there are currently no Provincial regulatory measures to stop practitioners from marketing pseudoscience. A group of MDs in Ontario is working independently for better regulation. They are seeking to collaborate with the federal government on a report addressing gaps in regulation and enforcement, to establish a clear path for policy around health claims for CAM and autism in Canada.
There is precedent for making these changes. In the UK, the Westminster Commission on Autism has written a comprehensive report that identifies such gaps in their current regulation and are working to address this problem so that complaints no longer fall through the cracks. The UK working group are helping to ensure that its government is more proactive in regulation and enforcement.
We hope to see the same in Canada in 2019.
Thank you for reading this report and for caring about the health and safety of autistic patients! Please follow us on Facebook or Twitter @a4aontario to keep informed. If you would like any other information, please send us an email at firstname.lastname@example.org.