As I watched Jenny McCarthy on Larry King Live last Friday, I found myself talking back to the TV, which rather quickly escalated into yelling at the TV, and then yelling at my husband. This was admittedly an unfair progression, but when I hear things that I know are untrue, or involve huge omissions, I get a little upset.
Ms. McCarthy, whose son developed seizures at two and a half, started out by saying: “When I first had Evan diagnosed with autism, there wasn’t much of anything. I had to find out about biomedical treatment on the Internet after I typed in autism on Google and three years later, there’s three books and many thousands of children getting better because of biomedical treatment.” I can only assume that she was referring to her three books, conveniently omitting the many biomedical intervention books that I read well before she came onto the scene.
As per her website, “the ultimate goal of biomedical treatment is to remove environmental toxins from your child’s body and repair the damage that has been done.” Although our family dabbled in this approach: I blogged about our experience with the GFCF (gluten-free casein-free) diet and we tried various supplements through the years, we were never convinced that they played a major role in Brooks’s progress, and we ruled out many of them (like vitamin B shots and chelation) simply because we believed they were too untested and potentially harmful. I need to stop here and add that I know families who believe in these types of treatments fervently, and please understand that I am criticizing neither their decisions nor their beliefs — I am only stating that a biomedical approach was not right for my family.
There is no denying that Ms. McCarthy’s celebrity status has brought an unprecedented amount of new attention to autism, and if that attention leads to more research and better-informed parents, I’m all for it. But I take issue with much of what this celebrity presents as factual, and I worry that this kind of misinformation is misleading and even harmful to autism families.
Let’s start with her assertion that vaccines caused her son’s autism. Conceding that neither I nor Ms. McCarthy have any background in science, I do know that the general consensus in the scientific community suggests that although vaccines are one of a number of environmental toxins that may contribute to autism, there is certainly no conclusive evidence that ties autism to vaccines (read more in recent New York Times and Los Angeles Times articles). Is it possible? Absolutely. Does it warrant further research? Absolutely. Do we need to worry about drug companies that care more about their profits than public health? Absolutely. But is there a straight line, cause-and-effect? Research says “no.”
And before we enter into any discussion about corruption in the mainstream medical establishment, let’s highlight some problem areas in the biomedical field. When my husband and I first investigated this avenue, we took blood samples from Brooks and sent them to the Great Plains Laboratory. Happens that the director of this same laboratory is also the founder of a company, New Beginnings Nutritionals, that sells the very supplements and biomedical treatments that Great Plains recommends, based on their test results. And, of course, the websites link to each other. Please understand that I’m not suggesting that there is anything nefarious going on here, but this is an obvious conflict of interest. Before the biomedical industry goes after mainstream medicine, it should look more closely at its own questionable practices.
Things only get worse if you start taking a look at J.B. Handley, the founder of Ms. McCarthy’s website, Generation Rescue. Mr. Handley mentions mercury twice on the home page as something he believes causes autism (his claims have changed), and yet he himself, as the Chairman of Genisoy Food Company, currently sells soy protein bars that were reported to contain mercury back in March 2008. Even more recently, The Washington Post broke the story about mercury in high-fructose corn syrup, which just happens to be a top ingredient in Genisoy’s Ultra Chocolate Caramel Bar. Given Mr. Handley’s position at Generation Rescue, I would have expected him to provide some sort of response or statement, particularly since he’s aggressively pursuing the medical establishment for mercury poisoning. But I couldn’t find any such statement. If anyone knows of one, please add it to this blog post.
And then, more “facts” that turned out not to be facts. Dr. Jerry Kartzinel, co-author with Ms. McCarthy of “Healing and Preventing Autism” and co-founder of Generation Rescue, said autism cases that involve a genetic component “might account for maybe less than one percent,” arguing that the environmental research that he supports should trump genetic research. He was corrected later in the program by Pediatric Neurologist Dr. Max Wiznitzer: “Well, we know that in about 10 percent to 15 percent of the cases, we can identify a genetic causation, unlike the number that was quoted beforehand.”
We also heard from Jim Carrey: “When I first met Evan, it was like he was on another planet. I wasn’t in the room. There was no eye contact, there was no response to dialogue, there was no response to affection. And over time, I witnessed Jenny pull Evan through the window of unconsciousness and isolation into our world where he is now a fully functioning person who can communicate, who can connect, and this is through biomedical treatments, GFCF diet, and the therapies that she’s talking about.” I wish someone would tell Mr. Carrey that my husband and I pulled Brooks through that window too, and that this same scenario he describes gets played out in many different families around the country and the world, with one important omission: no major biomedical treatments.
Ms. McCarthy and I have a lot in common: we’re both good moms who care about nothing more than saving our little boys. I’m glad to hear that Evan recovered. And by Mr. Carrey’s own definition of recovery, “a fully functioning person who can communicate, who can connect,” Brooks recovered too.
But when Ms. McCarthy claims that biomedical interventions are mandatory for recovery, she doesn’t acknowledge that Brooks exists. Or the many children like him whose families don’t choose biomedical options. Or the less fortunate children who don’t improve significantly despite their parents valiant efforts, biomedical or otherwise.
We all exist, and to leave us out of the equation is to misrepresent the facts.
Marni Goltsman
Capturing Autism 