Pseudoscientific treatments exist for almost all diseases and conditions, but parents of autistic children seem to be disproportionately targeted by quacks and snake-oil peddlers, according to parents and experts spoken to by BuzzFeed News.
“The targeting of parents who have recently diagnosed children is very insistent,” says Sarah-Jayne Garner, a mother of an autistic son and campaigner for autistic rights, who is herself autistic. “It’s constant. The first thing anyone says to you is ‘Get them on a gluten-free diet.’ It’s not backed up by any kind of serious science, but parents who are new to autism just don’t have the tools and knowledge to assess what’s being presented to them as solutions to what they’re told are their problems.”
There are hundreds of websites and Facebook pages that claim that autism is caused by vaccines, and which promote “cures” – often substances that can be bought via that website. And the stories they share are often hugely viral.
Analysis by BuzzFeed News found that more than half of the most-shared scientific stories about autism published online in the last five years promote unevidenced or disproven treatments, or purported causes.
My son was diagnosed a very short time ago. And yet from the moment I mentioned he was autistic to other people, I started hearing about unproven and illogical causes or treatment. While this seems like it could be part of a top ten listicle about what not to say to autism parents, it’s actually not just something we should laugh off.
Why? Because millions die without vaccination. Before the measles vaccination, 2.6 million people died of measles every year.
As someone who feels better when I don’t eat gluten or dairy, it’s a monstrously difficult diet to adhere to even when you prepare all your own food. I can’t imagine trying to give an autistic child with food aversions three meals a day and snacks without those two key ingredient classes.
These snake oil-like “cures” have terrible consequences, from nutritional problems all the way to death.
This article also addresses briefly the problem when parents receive the diagnosis–practitioners don’t give parents useful information about what to do. Regional centers, responsible for helping parents to access autism treatment, can be hit and miss when it comes to educating parents (my son’s case manager is awesome and we are very lucky). Parents often have nowhere to turn, other than the Internet and books.
I’m one of those late Gen X moms who lived an analog life and then became an early adopter of the Internet. I’ve been online for more than 20 years and I’ve struggled like most people trying to find reputable information online. And I’ve also been so frustrated trying to find information online about autism that I started this blog. So I get it.
But I also think part of this is about the inability to accept what autism really is. It is complex. It does not happen for one simple reason, and after decades of research, there are no researchers that can tell you more than it is part genetics and part exposure to unknown environmental triggers that cause it to be expressed. And even then, hard to say with 100% certainty that it’s never just genes or never just environment.
This leaves parents with an inability to know the cause, and very little information about what they can do to help their child live the best life possible with autism. So they want an easy solution like no vaccines or no gluten. But life doesn’t work like that, and autism doesn’t work like that.
And as a mama to an autistic son, autism isn’t what you think it is. That people are trying so hard to avoid autism that they would not vaccinate their kid and risk their death is horrifying. Autism is not a death sentence. In fact, while it is difficult for the parents, for many people with autism, the condition is responsible for some of the most important parts of their lives.
Autism helps Lionel Messi be the best soccer player in the world, for example. It helps people across a wide range of math, science and artistic disciplines innovate because they see the world differently. This is why many icons who lived prior to the current era of autism awareness have been diagnosed after death as almost certainly autistic. Geniuses like Albert Einstein, Michelangelo, Leonardo Da Vinci, and Beethoven, are among those assumed to be autistic based on what we know of their lives. Many became successful with teachers, parents, and community who allowed them to be who they were instead of forcing them to become neurotypical.
Many years ago, I asked a family member who is a pediatrician how kids who were diagnosed with autism, like Jenny McCarthy’s son, could be cured with the methods she pushes. The answer was very clear: they were misdiagnosed with autism in the first place.
And now that I have an autistic son, I wouldn’t want his autism to be “cured”. It makes him who he is, and he is wonderful.