Time magazine recently ran an
article about Jenny McCarthy, the mom I love to hate. She's taking a step back from her anti-vaccine crusade, instead advocating for further research on the subject. I agree with a scientist quoted in this article: 22 studies have shown no causal relationship between vaccines and autism, and it's time to put our research dollars into other areas, like genetic causes or environmental triggers.
I love this part of the story:
In McCarthy's world, there is scientific truth and there is emotional truth. There is the fact of a mother looking into her son's eyes and knowing something has gone very wrong and the fact of about two dozen studies showing no link between vaccines and autism. There is the truth of the parents and the truth of the doctors. And she believes that some truths are more equal than others. "She's a mom," says her boyfriend, actor Jim Carrey. "That's what she is. That's her truth." It all sounds so reasonable, expressed by the charming, gamine Jenny McCarthy. And this is what makes her dangerous.As they say, you are entitled to your own opinions, but not your own facts. This Time article says that something like 20% of American kids are not getting the suggested roster of vaccines, inspired by McCarthy's movement, and diseases like measles and mumps are reappearing for the first time in decades. I think McCarthy has been irresponsible in her use of her public platform.
But as much as I love to bash her, McCarthy is quoted saying something I believe is a truly important point: "
certain therapies work for certain kids and they completely don't work for others." This is totally true: a spectrum disorder requires a spectrum of approaches. I wouldn't be surprised if 20 years from now we discover that many of the individuals we have shoved under the autism umbrella actually have been experiencing a variety of diagnoses, caused by myriad genetic abnormalities and/or external causes.
We're finding this even today: the most ironic revelation from this article is that there is even debate as to whether McCarthy's son had autism at all - they say his symptoms (like seizures) seem more indicative of Landau-Kleffner syndrome.
I also learned a new phrase from this article: "Curebie community" - the camp of parents who believe they can cure their children of autism.
I am not a Curebie. I believe autism is as much a part of a person as his skin color or heritage. I could adapt to life in the Middle East or a rural village on the Indus River, but I'll always be a white Jew from New York.I wish Jenny McCarthy's family luck with their journey. I admit I know nothing about Landau-Kleffner syndrome. Maybe it is curable. Maybe the hyperbaric oxygen chambers, chelation, aromatherapies, electromagnetics, and spoons rubbed on her child's body have actually cured him of Landau-Kleffner. But I wish she would stop misinforming and misleading gullible, hope-filled parents of children with autism.
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I don't think there is anything wrong with advocating for "cleaner" and "greener" vaccines, which I think is the whole point. I don't think that vaccines are safe, but I also don't think that a lot of the food we eat or environmental toxins are safe either.
I think that it's not Jenny McCarthy herself but the media who has painted her in this negative light. I don't agree with everything she says. I don't think that HBOT and chelation is the way to go for my child. But I did notice a huge difference once we started the gfcf diet and I would never have found that if it weren't for Jenny McCarthy. It also could have been a full six months to a year before I would have even CONSIDERED autism if I hadn't seen McCarthy on Oprah in 2007. I don't think she's 100% right, and I don't think she's ever used the word "cure". I think "heal" and "recover" are better words. I had a child who was saying real words, was playing appropriately, following directions one day. The next day, and "coincidentally" the day after she received SEVEN vaccines, she was in an entirely different world. She wouldn't look at me, she lost every bit of language she had, and she didn't know how to play with her toys anymore. She barely even noticed that she had a brother (who was 2 months old at the time). I agree that not every circumstance is the same, but the fact that doctors call moms like me "crazy" and "overprotective" and call my child "stubborn" instead of addressing the real issue is really sad and demeaning. It makes me feel that just because I don't have a medical degree and God forbid, I have a uterus that I am LESS of a person and not freaking worth his or her time. I knew something was wrong at 15 months. She was over THREE years old when I finally got a doctor to listen to me.
If we believe that there is no point in trying out alternative therapies, why do we subscribe to such things as speech/occupational therapy and ABA? Many of those were "alternative" therapies years ago. Heck, 30 years ago, you and I would have been called "refrigerator moms" who did something wrong and didn't care enough about our children and THAT'S why they have autism. It takes some alternative thinking to change the minds of a lot of people.
There is so much anecdotal evidence..the "My child was perfect until the vaccines"..anecdotal..our memories are very interesting things. Jenny McCarthy HAS used the words BROKEN and FIXED.
There have been many theories as to what causation is..Refigerator mother was one of them..SCIENCE changed that. Just as SCIENCE has proven over and over again that vaccines are not the cause of autism.
I do believe Jenny McCarthy is dangerous. Oh sure, people can say she is about "greening" our vaccines..and yet at the same time she is giving absolutely false information about what is in them-anti-freeze? Jim Carrey on Huffpo saying tetnus was uneccessary? .
I have four children-three are on the spectrum..none of my children have ever received 7 vaccines at once..Further, I staggered my second childs vaccines-he has been diagnosed with classical autism. (This was diagnosis was given at the age of three-simply because children do things at different rates-3 seems to be the general age of diagnosis). He is the most severly affected by autism.He was born with autism. As were my other two. They all continue to develop and grow.
Many of the so called alternative therapies/ cures are harmful, painful, dangerous, unneccessary-and unproven.I love the idea that Jenny yells about big pharma making all of this money-have you ever looked at how much these alternative therapies cost? Chemical castration, nicotine patches, I.V. chelation therapy, Hbot..children have been harmed, some have died. I don't know of anyone who has ever died from autism
I talk with many adults on the spectrum-the ones that Jenny McCarthy and Genrescue don't want to acknowledge. There is much to be learned from them. Unfortunately, people would rather get their scientific and medical advice from a celebrity.
@autismherd - My youngest son showed signs before age 3, that I noted. But the testing center told me we had to wait until age 3 before they'd confirm his diagnosis (PDD-NOS?? That's confirming it??) because of what you mentioned. Kids develop at different rates and by age 3, even the slow-bloomers are usually caught up.
Both my sons showed signs since birth, but I do know of some types of autism that truly do not seem to happen until later after speech has developed normally, etc. The child truly regresses.
I'm not saying it's vaccines... I'm not saying it's anything since the science I've read hasn't pinpointed any cause or causes.
I think the media did play a part in portraying Jenny as the go-to person for a parent dealing with autism, but she also played the part herself, willingly.
Before this article in Time came out, I wrote a story about her because people were calling for John Travolta to step up and speak out about his son. I urged parents to find another source (preferably people who have seriously studied this disorder/syndrome for years and years, etc.) than a person who only has celebrity on their side. Nothing against any celebrity personally... but they're not neurologists. That may be why Mr. Travolta did not come forward onto center stage about autism: because 1) his religious views doesn't believe in autism and 2) he knows he wouldn't make a good source.
I hope the lesson learned is to go to more than one person for information in the future. I know many moms did do further research after reading Jenny's books and interviews... but we often believe the first person we hear :)
Hi Heatherbabes..when I said my kids were autistic at birth, I was saying that vaccines did not cause it. My oldest, was diagnosed at about 3 1/2 (he's 11 now-so that is a rough estinmate) He developed normally-spoke words, and had small three word sentences by the time he was 10 months old..at about a year..he started not speaking as much..by 18 months he stopped altogether..(long story short-he has worked very hard, is in a regular class at the appropriate grade level, he speaks, does not have an aid..graduated out of O.T. last year) From birth-I thought he was different..The only reason I noticed anything was beacause he was in a day care-and I measured him against the other babies..can't put my finger on it-he was different. Blah blah went to dr.'s told I was a new mom etc. I don't believe that he regressed into autism-I believe that many of the more extreme aspects started to manifest themselves. This is generally (the ages between 18 month and 3 yrs.) when this has been know to occur.
As for Jenny McCarthy. I believe she is incredibly dangerous. It was this article that convinced me of that http://www.time.com/time/health/article/0,8599,1888718,00.html This is from last April. Moreover, She talks about people with autism as if they are somehow broken or less than. Unfortunately-because she has become the appointed speaker of all things autism-popular media gives her a lot of air time. Unfortunately, many many people (because of Ms. McCarthy, genrescue, AoA, autismone etc) Do not go to their doctors-the medically trained people in their lives-because they have been told not to trust them. Just an aside, in the more recent TIME articel-Ms,.McCarthy portrayed doctors (mainstream not DAN!) as saying there was no hope. I have never in my 11 years of motherhood heard that from a doctor-never.
I too hope that people look further than a popular celebrity for answers. It would be nice if adults on the spectrum were given a voice. There is much to be learned. :)