Opinion: It Kills To Mourn The Living

This June, in Olot, Catalonia, an unvaccinated boy died of diphtheria, an infectious disease which can cause white patches on the roof of the mouth, skin lesions, difficulty breathing, and paralysis. Thanks to vaccinations, diphtheria has become extremely rare, but this child had no protection.

His parents, who reported feeling “tricked” by anti-vaccination groups, agreed to vaccinate their younger daughter. “They have a deep sense of guilt,” explained Catalan health chief Antoni Mateu. But unlike them, many parents, performers, and presidential candidates continue to ignore the deaths of unvaccinated children, proclaiming that ending the unrelated “autism epidemic” somehow merits the very real epidemics of measles, pertussis, and influenza throughout the world.

Not only are anti-vaxxers incredibly dangerous on their own, they often support other harmful autism treatments based on junk science. Take, for example, a woman named Kerri Rivera, who runs the website “CDAutism,” which promotes the use of chlorine dioxide—an industrial bleach used in paper production and water purification—as an autism cure. Parents are instructed to feed this to their children, eight times a day, and even administer it as an enema. This removes the lining of their intestines, which is then passed in a bowel movement as a long, often bloody, string of mucus.

Parents are told this is a “parasite” causing the autism, and that the fever, vomiting, and diarrhea are just the body getting rid of some vaguely defined “toxins.” Rivera describes this as a “Herxheimer reaction,” which is a term used to describe chemicals that are released by certain bacteria when killed by antibiotics. Now, autism isn’t caused by bacteria. It’s not even caused by giant worms, and giant worms aren’t bacteria, so you can’t “herx” when they die. Besides, the symptoms of a Herxheimer reaction include fever and headaches, not vomiting, so it’s pretty obvious that’s not what’s going on.

When I reached out to Rivera and asked why she considered a toxic chemical safe to use, she quoted Paracelsus, a sixteenth-century alchemist, at me: “Everything is poisonous, nothing is poisonous, it is all a matter of dose.” That may be true; the EPA does consider water treated with chlorine dioxide to be safe to drink at a concentration of under 0.8 mg/L. But even the smallest recommended dose of a 28% chlorine dioxide solution, 1 drop in 1 cup (4372 drops) of water, comes out to 59 mg/L— over 70 times the maximum dose.

If the chlorine dioxide doesn’t work, Rivera has other, equally ridiculous experiments to try. One of these is chelation, which is a perfectly valid treatment… for mercury poisoning. Not for autism. In fact, when chelation is used on people without mercury poisoning, it can remove metals the body needs to function, such as calcium. In fact, since the 1970s, over 30 people have died from lack of calcium after being given disodium EDTA, a chelator not approved by the FDA. In 2005, one doctor, Roy Kerry, was charged with unprofessional conduct after chelating an autistic five-year-old and killing him, but many still get away with it. As of 2008, 7% of autistic children have undergone chelation.

Or you could try hyperbaric oxygen therapy (HBOT), which involves breathing pure oxygen in a chamber with air pressure over three times the normal air pressure. This is used to treat decompression sickness suffered by divers, as well as a few other serious conditions, such as embolism (bubbles in the blood vessels). What HBOT does not treat are the fictional “brain lesions” that its supporters believe causes autism. HBOT may cause sinus pain, ear injuries, paralysis, and blindness. In one instance, a boy was badly burned after the oxygen in an HBOT chamber caught fire.

Kerri Rivera doesn’t support this, but some people are even into chemical castration, where teens are given chemicals that block their sex hormones based on the claim that testosterone somehow makes the non-existent extra mercury in their bodies harder to remove. This can lower their bone density and stop puberty, among other dangerous side effects.

As you can see, there’s a lot of fraud going on. Why not stick with tried-andtested treatments instead?

Because those tried-and-tested treatments aren’t much better. For example, Applied Behavioral Analysis, or ABA, is a form of compliance training developed by the same psychologist who invented LGBT conversion therapy. The goal is to make the autistic child “indistinguishable from peers,” which is done by spending 40 hours a week requiring them to do inane tasks like touching their noses—punishing them if they don’t and rewarding them if they do—to make them putty in the hands of the therapist. Once their will has been sufficiently broken down, they can then be coaxed into stopping so-called “problematic behaviors,” such as hand-flapping (which is actually a way of releasing tension), refusing eye contact (eye contact overwhelms autistic people and makes it harder to listen), and repetitive play (a pathologizing term used to describe behaviors such as lining up toys over and over). Finding this bothersome, ABA therapists force children to perform other kinds of play they find incredibly boring—because to them, play isn’t just play; there’s a right and a wrong way to do it, and you have to be taught how.

“Behaviorism really just relies on the observations of neurotypical researchers and doctors. Unless you are asking them, or asking another autistic person, you can’t know for sure why they are doing the behavior they are doing,” explains Amythest Schaber, an autistic adult and member of the Autistic Self-Advocacy Network. “What may seem simply bothersome or strange-looking to you, like hand-flapping, is necessary and an important self-regulation tool to autistic children… What you’re teaching children through ABA therapy is that who they are is wrong and bad, and that the way that they move is shameful and needs to be changed.”

“Why do we not use ABA for the neurotypical population?” demands Ariane Zurcher, who runs the blog Emma’s Hope Book with her autistic daughter, Emma. “ABA can only really work if we view autism as a deficit and something that must be removed.”

Which is exactly how our society views autism. Autistic people are seen as broken, unfit for society, undesirable. People throw around the word “autistic” like it’s an insult. It’s still considered politically correct to say “person with autism” instead of “autistic person,” because this “puts the person first”—implying that being autistic makes you less of a person. The nation’s largest autismrelated charity, Autism Speaks, has released a short film in which their thenExecutive Vice President spoke about how she contemplated committing murder-suicide with her autistic daughter—while that daughter was still in the room! And when people do kill their disabled children, the media is sympathetic, blaming their brutality on a “lack of services” or even suggesting that the child deserved what they got.

Look up Alex Spourdalakis. Katherine McCarron. Jude Mirra. London McCabe. Robert Robinson. Zain and Faryaal Akhter. All were innocent. All were blamed for their own murder.

Moreover, if you are autistic, there is not much you can do. If you comply with this dehumanizing abuse, you’re proof that it’s “not that bad.” If you do not, either your noncompliance is written off as a symptom itself, or you’re deemed too “high-functioning” to understand the struggles of the Real Autistics. “The people who I help are not able to boycott or oppose ideas,” says Kerri Rivera. “They are too busy running in circles, banging their heads, crying, not sleeping, having diarrhea chronically for years, totally nonverbal.”

But how does diarrhea keep you from being able to protest? And “not sleeping”—how can you do anything while you are sleeping? Why can’t Rivera bother figuring out why the people she “helps” are upset enough to cry and bang their heads? Even if someone cannot speak, type, sign, or use an alternative communication device, that doesn’t mean they can’t express themselves. Behavior is communication. Autistic people have their own body language, though it’s often not recognized as such, and the best interpreters are other autistic people, who can tell you just why your son is flapping his hands or your sister is banging her head or your friend is spinning around in circles.

Autism Speaks echoes Rivera’s divisive sentiment, explaining that “those who are least severely affected may just need an openness and understanding of the character traits that make them unique. Those who are more impacted by autism, like my son, may need therapies and hopefully a medical breakthrough that will come through scientific funding.” Such a statement creates a false dichotomy that invalidates the challenges that many autistic people face. Many autistic self-advocates can’t speak or care for themselves independently, and still oppose efforts to make them less autistic, preferring that services and research go toward finding ways to work with and around their disability to make life easier. By speaking over people with severe impairments and implying they don’t need acceptance and understanding, Autism Speaks contributes to the systematic dehumanization that drives people to try anything, no matter how risky, to make their children the “real people” they dreamed of.

There’s not much difference between parents who use biomedical treatments for autism and those who follow standard practice. Both sides see autism as a fate worse than death; a demon that must be purged at all costs. Nothing could be further from the truth. Autistic people do live happy, fulfilling lives. They are talented, passionate, joyful. Autism can be a meaningful part of someone’s identity, even a source of pride. Such a thought threatens a society that values human life only in terms of cost and productivity, and punishes anyone who cannot conform to an everconstricting, impossible ideal, but understanding it is crucial if we are to ally ourselves with the autistic community.

When some people talk about a “cure for autism,” they speak only of reducing the impairments that often come with it, such as sensory processing disorder and communication difficulties. This is a legitimate concern, and there are already many ways to handle these problems. Others want to take the autism away completely. Because autism affects every aspect of how a person thinks, feels, and perceives the world, this effectively amounts to killing the person and replacing them with a new one.

Thankfully, it’s probably not even possible.

But as long as the medical community makes that their goal, and charities spend more money on medical research and fearmongering than on services that could help autistic people right now, parents are going to be desperate. They’re going to be scared. And they’ll try everything they can to fix their children, even if it could kill them, because nobody told them their children weren’t broken in the first place.