Searching for miracle cures fans false hopes, wastes time, and enriches con artists.
Every parent wants a perfect child who grows up to have a major impact on the world and the love and adoration of the masses. Parents fantasize about living vicariously through their child prodigy, who will fulfill every dream they couldn’t in their lifetime.
Of course, every parent is then disappointed, but most parents get time to abandon their crazy fantasies and accept whatever reality their child embodies.
Autistic parents don’t get this luxury. They must abandon their fantasies early and realize almost none of their dreams will come true.
See: From Denial to Acceptance: Parenting After an Autism Diagnosis
The Lure of Snake Oil
Desperate parents searching for a cure are susceptible to all manner of ripoffs by con artists selling Snake Oil.
This is reinforced by stories such as Lorenzo’s Oil, where a parent really did find a cure for an unusual medical condition through dogged research.
Every special needs parent thinks they will be the lucky one who discovers the cure.
Sorry to be so blunt; it’s not going to happen.
This scene is gripping. The worst news a parent could possibly obtain.
Cures versus therapy
Parents who get an autism diagnosis usually react negatively. They don’t want an autistic child, so they seek “cures” for autism, the complete eradication of the “disease.” Unfortunately, autism is not a disease that can be eradicated. It’s a neurological difference that’s part of who that child is.
Like any parent, I still want my autistic son to gain more independence and self-reliance, develop outside social relationships, and become part of his community. Therapies can help in that regard.
But I don’t feel the need to “cure” him or make him something he is not. I accept him just the way he is.
The key difference is the mindset of rejection and “curing” versus the mindset of acceptance and “growing” and maturing.
See: The Unbridled Joy of Special Needs Parenting
Every special needs parent must learn to recognize their motivations for embarking on any treatment for their special needs child. It’s essential to know the difference between a cure for a disease and therapy for symptoms.
The key distinction lies in their respective objectives and outcomes:
Cure for a Disease:
- Objective: The main goal of a cure is to eliminate the root cause of the disease, leading to the complete eradication of the condition from the body.
- Outcome: When a cure is successful, the patient is typically free from the disease, and there is no longer a need for ongoing medical treatment or intervention.
- Examples: Antibiotics for bacterial infections, antiviral medications for some viral infections, surgery to remove a tumor, and vaccination to prevent specific diseases.
If you believe the treatment is a cure, you are mistaken. You will likely be subjecting your child to unnecessary pain and risk of further complications caused by the treatment.
See: Polypharmacy: Making Zombies of Special Needs Children
Therapy for Symptoms:
- Objective: The primary aim of therapy for symptoms is to alleviate or manage the signs and symptoms of a disease or medical condition, rather than curing the underlying cause.
- Outcome: While therapy for symptoms can significantly improve a patient’s quality of life and provide relief, it does not eliminate the disease itself. Patients often require ongoing treatment to manage their symptoms effectively.
- Examples: Pain management for chronic conditions like arthritis, insulin therapy for diabetes, physical therapy for musculoskeletal issues, and medications to control symptoms in conditions like asthma or allergies.
In summary, a cure for a disease aims to eliminate the disease’s root cause, resulting in the complete recovery of the patient. This isn’t a possible outcome with autism.
In contrast, therapy for symptoms focuses on managing and alleviating the signs and symptoms of a disease or condition without necessarily eliminating the underlying cause and may require ongoing treatment.
The snake oil sales pitch
Snake oil is a term used to describe deceptive marketing, health care fraud, or a scam and refers to any worthless concoction sold as medicine.
People facing serious health issues or chronic conditions are desperate for relief and hope. Snake oil treatments often exploit this vulnerability by offering false promises of cures or relief, providing a false sense of hope in challenging situations.
Look out for these warning signs:
- Fear of Missing Out (FOMO): Fear of missing out on a potential miracle cure drives parents to try unproven treatments. This is by far the most pernicious emotion that snake oil salesmen prey on. Parents feel that if they don’t try the treatment, they might miss the one solution that could help them. It’s the Lorenzo’s oil syndrome I outlined above.
- Emotional Appeal: Snake oil treatments often employ emotional appeals, promising not only physical relief but also the emotional well-being of having a “cured” typical child.
- Authority and Trust: Snake oil treatments use persuasive tactics, endorsements, or testimonials from seemingly credible sources to gain trust and credibility. People are more likely to believe in the treatment if it appears to have endorsements from experts or authorities. Sadly, when you see this on the internet, it’s mostly made up, often a complete fabrication.
- Confirmation Bias: People tend to seek out and remember information that confirms the efficacy of the treatment, choosing to believe anecdotes and testimonials that support their beliefs while ignoring the full-weight contradictory scientific evidence.
- Lack of Scientific Literacy: Limited understanding of scientific principles and critical thinking can make individuals more susceptible to snake oil treatments, contributing to confirmation bias.
- Stigmatization of Conventional Medicine: Skepticism or distrust of conventional medicine and experts makes people more receptive to alternative or pseudoscientific treatments.
- Cognitive Dissonance: When parents invest time, money, or effort into a particular treatment, they often experience cognitive dissonance if they later question its effectiveness. To reduce this discomfort, they convince themselves that the treatment is working or ignore evidence to the contrary. Internet forums are littered with parents who tout the improvements they witnessed in their special needs child due to some completely ineffective snake oil treatment.
To make the best choice, parents should base their decisions on scientific evidence and expert guidance rather than falling prey to snake oil treatments.
Navigating the range of treatment options is difficult. It’s particularly challenging when it comes to dietary interventions. Even adults fall victim to crazy diets and odd mineral supplements.
Sometimes good therapy alternatives are mixed with snake oil treatments from respected sources.
See if you can parse the difference here.
Preying on desperate parents
If you have money, there is no shortage of snake oil salesmen who will sell you some valueless or fraudulent cure, remedy, or solution.
We know a family that purchased a hyperbaric oxygen chamber for their home, thinking it would be a cure.
I installed stereo speakers on each side of my son’s crib so that I could play brainwave entrainment music to influence his brain states.
We sat through a sales pitch from a doctor who was an expert on magnetic resonance therapy. It would have cost us more than a new car.
Many parents go down the diet and nutrition rabbit hole and determine gluten or wheat is their enemy. They embark on mineral chelation therapies.
It’s not that these snake oil treatments provide no benefit, but it’s certainly true that they don’t cure autism, and they never will.
The worst part of the sales pitch is when the huckster plays on the emotions of desperate parents for personal gain by saying, “What if this was the cure? Wouldn’t you want to try and make sure?”
For as much as I work to abandon anger, I still find I get a flash of rage when I hear some version of that sales closing technique.
I find it difficult to feel compassion for someone willing to prey on desperate parents who want a better future for their children.
Don’t fall for their self-serving manipulations.
Save your money, and don’t purchase snake oil.