Content warning: This article discusses autism pseudoscience, and deaths of autistic people from autism “treatment.”
It should go without saying that autism pseudoscience is extremely dangerous and harmful to the autism community. Some autism pseudoscience techniques range from providing essential oils, supplements, or a change of diet to “treat” autism. Others are much more lethal, such as electric shock, ingesting damaging substances, and undergoing chelation (which is used to remove toxins from the body believed to cause autism and has sometimes lethal side effects, such as kidney damage). But those who propagate autism pseudoscience believe that they are doing the “right thing,” and call themselves activists in the fight against “big pharma.” In reality, autism pseudoscience is a big business of it’s own, and it is costing the lives of autistic people.
Autism pseudoscience, as many false beliefs do, spreads primarily by fear and ignorance. In 1998, a British study claiming a link between autism and vaccines spread fear throughout Britain and the Americas. While vaccination rates dropped, measles cases skyrocketed. While Andrew Wakefield lost his medical license after the study was continually debunked and discredited, this false study continues more than twenty years later to negatively impact public health as parents continue to refuse to vaccinate their children out of fear that they will “catch” autism. Because autistic children are often diagnosed at the ages of around 2-4, or often soon after receiving vaccinations, the correlation is believed to be causation and a false link is made that a mercury or other preservative in vaccinations causes autism (and mercury has since been removed from the MMR vaccine that is claimed to cause the link in Wakefield’s study).
Fear is spread the very moment a parent’s autistic child is first diagnosed. Parents are told that autism is a lifelong condition, which brings immediate fear about that child’s future, about that child’s dependence on them, and about their capabilities. They are told that autism is a debilitating disorder requiring substantial support. They are told that their nonverbal autistic child will never be able to communicate with them, look them in the eyes, or give them a hug. They are told every negative thing about autism, and this fires a desire inside them to “beat” autism.
Parents then search autism treatments on the Internet, and are led to a plethora of autism pseudoscience resources and techniques. They may read a blog from another pseudoscience propagator and sometimes, even licensed medical practitioners, of autism pseudoscience recommending supplements, vitamins, or essential oils to “treat” autism. They may search for books or go to conferences of other propagators of autism pseudoscience. Fearful parents and caregivers go to “doctors,” who sell vitamins and supplements for hundreds of dollars on their websites, and recommend chelation to get rid of the “toxins” in autistic people. Autism pseudoscience even hurts the very people who spread it; caregivers can spend thousands of dollars on oils, supplements, and ABA treatments that seek to “cure” autism. Parents are desperate for their nonverbal autistic children to talk and communicate with them, and are told that there is no hope for them. They have listened to advertisements by large autism organizations, such as Autism Speaks, that have used words such as “burden,” and “tragedy” to dehumanize autistic people, and have claimed that autism is an “epidemic” due to the rising autism rates (which are caused by improved diagnostic methods rather than more people “catching” autism from vaccine preservatives).
Who spreads autism pseudoscience? People from caregivers and guardians, celebrities, politicians, and even other doctors. Parents believe that treating their autistic children with pseudoscience and give them intensive autism therapies are “cured” when they meet social norms, when in reality, they have learned or have been conditioned to mask their autistic traits by Applied Behavioral Analysis (ABA) practitioners and by other social pressures. Autism pseudoscience is dangerous, because it appears to be legitimate, when even medical professionals recommend autism “cures” and “treatments,” and have large celebrity voices who tell the public about the benefits of using essential oils to “treat” autism. The fight by autism pseudoscience “activists” is against autism, when it should be against barriers in society that prevent autistic people from gaining accessibility and equality.
Autism pseudoscience comes at a tremendous cost. On March 1st, or Disability Community Day of Mourning, the disability community comes together to mourn disabled people who were killed unjustly, and autism pseudoscience is responsible for many of these deaths. Caregivers who believe that autism is caused by toxic chemicals force their autistic children to take autism “treatments” against their will. Some “treatments” include changing diet, which may not seem like a big deal at first glance, but many autistic people have AFRID, or avoidant food restrictive intake disorder, which is caused by extreme sensitivities to tastes and textures. Forcing an autistic child or adult to change their diet and eat foods they have a severe aversion to is abuse. Parents who believe that their child’s autism will “improve” if they change to a gluten free, dairy free, or alternative diet may take comfort foods away from their child. Others include supplements that claim to “improve” autism, such as the untrue claim that cod liver oil or other essential oils will improve eye contact. The worst forms of autism pseudoscience are lethal and physically and psychologically abusive, such as treatments used to treat lead and mercury poisoning such as chelation, ingesting bleach, and electric shock therapy. And the worst part is that many autistic children who are nonverbal have no say in the matter of whether they are vaccinated or whether they receive autism “treatments.”
So, how do we fight autism pseudoscience and misinformation? The best way is to pressure large companies to prevent accessibility to it. In the wake of another measles epidemic in the United States and out of pressure from lawmakers and public health advocates, companies are taking action to prevent misinformation and pseudoscience from spreading. Pinterest has blocked vaccination search results. Facebook has excluded groups and pages that promote misinformation about vaccines from recommendations and search predictions. YouTube has demonetized videos on its website promoting anti vaccination and autism pseudo-scientific beliefs. Most recently, Amazon has removed books promoting autism pseudoscience from its platform, and removed anti-vaccination documentaries from Amazon Prime Video. This way, when concerned caregivers search for autism “cures” on major websites, resources to help autistic people by providing them with accommodations could appear before autism “cures” do.
Another simple way to prevent autism pseudoscience is to stop giving attention to celebrities, politicians, actors, and other figureheads who promote misinformation and autism pseudoscience. Persuade autism pseudoscience “activists” to fight for something else. Don’t fight autism and look for autism cures; fight barriers that autistic people endure. Fight for improved accessibility and affordability of AAC and other communication devices for nonverbal autistic people. Fight against ABA therapies that condition autistic people to socially mask their autism. Fight for improved affordability to healthcare and housing for autistic adults. Boycott organizations such as Autism Speaks, which has a lengthy history of promoting and funding autism cures and treatments. If every person who fought so vigorously for autism cures fought for rights for autistic people, perhaps we can disrupt the business of autism pseudoscience.
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