The Jenny McCarthy story: what this weekend says about autism in our culture
The mommy/pediatric/autism world was buzzing this weekend over a report regarding Jenny McCarthy’s son Evan. If you follow Jenny or The View or the autism community or the anti-vaccine “movement,” then you know Jenny McCarthy has a son with autism and that she has been very vocal about her opinion that vaccines caused his autism. She has written books describing how Evan developed autism and how she cured him. Understandably, Ms. McCarthy draws the ire of the pediatric and infectious disease community far and wide over her claims and their potential to scare parents away from vaccines.
This weekend, the issue flared up again when a Radar Online article claimed that Ms. McCarthy’s son never had autism but had been misdiagnosed and actually had a rare neurologic disorder called Landau-Kleffner Syndrome. The implications of this, which were based on a 2010 Time magazine article, were enormous: that Ms. McCarthy had misled people for years while advising parents not to give their children vaccines. Ms. McCarthy shot back on her own Facebook page with a statement confirming her son’s autism diagnosis and scolding the site for misrepresenting the story, and Radar Online subsequently took the article down. In fact, the Time magazine article quotes experts saying that Evan’s symptoms look like Landau-Kleffner, but not McCarthy herself disavowing her son’s condition, which was diagnosed by a team at UCLA.
Whether or not Evan has autism is irrelevant to the two issues here. First, we know nothing of his diagnosis or evaluation outside of what we are told by this mother. And that is exactly how it should be. Patients’ medical information is private and cannot be released without a court order to anyone other than their parent or guardian. This works to protect our medical privacy. It also means that as the reader we always have only one side of the story. We are blinded to any data supporting or refuting what a person tells us about their history.
Second, autism diagnosis can be tricky. While more and more places around the country are becoming experts at recognizing symptoms of autism and autism spectrum disorder, it often takes families a year or more from initial suspicion that something is atypical to full diagnosis. Neurologic disorders, like Laundau-Kleffner, as well as many others, need to be considered before a firm diagnosis of autism is established. In the case of Landau-Kleffner, a misdiagnosis is easy. With a renewed focus on early diagnosis and early intervention, the medical community is getting much better at diagnosing autism spectrum disorders than even a generation ago.
While not a personal fan of Ms. McCarthy, I wish her son only the best. From what she tells us, he is doing quite well and that is absolutely wonderful. But it’s also worth mentioning that the encyclopedic volume of research has yet to prove any link between vaccines and autism, as she has repeatedly claimed. When researching medical health decisions it is best to stick to trusted sources of medical information and not be tempted to follow the fads of pop culture.
Unfortunately, we do live in a society that is highly influenced by pop culture. I feel very strongly that all parents need to vaccinate their children. Not only does it protect your own child, but also those around you.
I completely agree Shelley. It’s so sad that people are influenced by celebrities.
This makes me crazy! First of all it really isnt anyones business and who the heck cares? Vaccines do not cause autism and as we are all very sorry her son is not exactly “normal” she should have never made such a huge stink about vaccines being the reason. I definitely do agree that autism is difficult to diagnose, but on the other hand just because a child is “a little off” we need to jump to such a diagnosis. Like Evan is a perfect example. Something was up, ok yup, he has autism. I believe this now “popular” diagnosis, because no one else knows what to say is wrong or not wrong with someone’s child is really taking away from those who are legitimately autistic. I work in the operating room at a childrens hospital. In my report i often am told “this child has autism”. Ok really? Because he seems more normal than my last patient who was claimed to be “normal”. I feel this diagnosis is getting thrown around just like ADD or ADHD. I feel this is a huge diagnosis for parents to comprehend. It is hard to think one may have a autistic child.
YES! I think what we can learn from this first and foremost is what an influence popular culture can have on how parents choose to make important decisions about healthcare. We need to understand where they are coming from but be tireless in our efforts to promote actual evidence-based data, like what we do here at Bundoo. I am sad to think about the influence Jenny McCarthy has had on the resurgence of measles, but hopefully this can be a step in the right direction.