Getting the Facts Straight in Louder Than Words
December 21, 2007 by Kristina Chew, PhD
Filed under Health
Of the many books about autism published this year, Louder Than Words: A Mother’s Journey in Healing Autism by Jenny McCarthy must have sold the most copies. McCarthy appeared on every major TV talk show from Oprah to Good Morning America to Larry King and the book was on the New York Times bestseller list for quite a while. I’ve written a number of posts already on McCarthy—-Jenny, We Hardly Knew Ye and The New McCarthyism—and heard her interviewing parents at the National Autism Association conference in Atlanta in November.
Having read McCarthy’s book, I wish to point out an error in one passage that is emblematic of McCarthy’s rather haphazard use of facts and information in her account of how she “recovered” her son Evan from autism. Here in chapter 11, “The Window Exists,” McCarthy describes what she learned from researching autism on Google.
In the week after reading the books on autism, I still felt like I needed more. I sat down in front of the computer and Googled “autism.” I was shocked by all the information and statistics I found. For starters, autism is way more common than I ever expected, and it keeps growing. It’s the fastest-growing developmental disease, with a 10 to 17 percent annual growth rate. To break it down, every twenty minutes a child is diagnosed with autism. That works out to seventy-two kids diagnosed every day. Statistically, according to the Centers for Disease Control and Prevention, one out of every hundred and fifty kids is autistic, and one in every ninety-four boys has some form of autism. Of autistic kids, 1 percent to 10 percent are savants of some kind.
The other weird thing I saw was that Abraham Reichenberg, Ph.D., at the Mt. Sinai School of Medicine, had discovered that men over forty were 5.75 times more likely to have a child with autism.
After all those statistics,I kept looking, and I found a site that said, “Autism is reversible.” (p. 82)
McCarthy’s son, Even, was born on May 18, 2002. McCarthy’s son was about 2 years old (perhaps 3; it is not entirely clear) at the time of the passage above in which she recounts how, in 2004 or 2005, she researched autism on Google. However, the figures from the CDC that McCarthy cites—that 1 out of 150 children has autism and that 1 in 94 boys is autistic—are those released in February of this year, 2007. In the first paragraph quoted above, McCarthy makes it seem as if she is looking up the “1 in 150″ and “1 in 94″ figures when she was looking for information about autism back in 2004 or 2005. There is indeed a lot of information to be found on what McCarthy calls “the University of Google,” but it’s unlikely (as in, it is not possible) that she would have found CDC statistics from 2007 back in 2004 or 2005.
This is not the biggest or the worst of errors in McCarthy’s book; errors in Louder Than Words are venial, and will surely be expunged in the paperback 2nd edition. A few more, then: On p. 127, she mentions a “hepatitis C vaccine” but there is no such vaccine; on p. 197, she says that CARD is the “only national organization” providing ABA—what about this provider?; Abraham Reichenberg’s research correlating older fathers and autistic children was published in September of 2006, at least a year after McCarthy claims she heard of it.
If McCarthy’s book has so many of these sorts of small errors, how valid is her main claim about “recovering” her son from autism?
That is why it is so frustrating to have her going out and speaking about autism. I believe that awareness needs to be raised but when she is throwing out information that at best is not complete and at worst just wrong it is hard to explain to people that she is not an expert and that I too have done my research just not on google but through science journals and our doctors. It is wise in todays age of instant information to realize that we can get the information easily but that does not make it accurate. Even wikapedia is a site that can have inaccurate information I was shocked at how many parents in my oldest class did not realize that you could not site wikapedia as a reference on a paper. Thank you so much for brining us the information when it comes out and allowing us the links to research it. It has been so helpful and made my looking things up much easier. Have a wonderful holiday season with your family.
What is clear is that she has little regard for the truth.
Wow, those are some glaring mistakes. The fact that she is citing those as personal experiences (Googling the information at a specific time) is evidence that those mistakes are actually lies.
I know that I “Yahoo’ed” autism back in 2002 and didn’t find squat except CAN!, and autism society pages. It wasn’t until I discovered http://www.gettingthetruthout.org in early 2006 that the ball started rolling with obtaining online information about autism and autistic people. Otherwise I was reading books.
“McCarthy’s son was about 2 years old (perhaps 3; it is not entirely clear)…”
This is because her ghost writer wasn’t sure. Same thing with the ‘research’ cited; the ghost writer googled it only months before the book’s publication.
Perhaps a new ghost writer is needed.
I’m not sure it’s a ghost writer, or McCarthy is doing a lot of revisionist history. People “remember” all kind of interesting details. It just seems that McCarthy may well be remembering more of these than most (in fact, these “details” are indicative that there is no such ghost writer).
Cliff
Thanks for the critique and fact-checking.
The bottom line is that the book is unreliable, which is not reassuring, given that drafts can be proofed, fact-checked and edited before publication. Inadvertant or not, it would constitute revisionist history.
That doesn’t speak well to taking spoken, off the cuff statements as entirely bottled-in-bond fact, given that speech does not even have those advantages, opinion is often subjective, and given that memory is sometimes an unreliable thing as Cliff has pointed out.
There were a few more things I wanted to note — the “blue pills” and the “yellow pills” and the “white pills” (her son’s seizure medications).
It bothers me to see such innacuracies become mainstream because of her “fame.”
It’s true it may not have been a ghost writer, but most all celebs are given them, although there can be exceptions. Regardless, what’s really missing is a fact checker, which would ultimately be the publisher’s responsibility.
Thanks, Kristina, for what you’ve uncovered. I think it’s a very important find.
Oh, and it wasn’t at all difficult to locate the “autism if reversible” (sic) site. I really doubt she had to go “looking” for it, as it was a long-time google ad, which ran at the very top and along the right side of most all autism-related searches. Most of all us know the man behind that ad particular ad campaign.
I was just about to say how many more inaccuracies and false information are present in her book? You mention her son’s seizure medications and I wonder if you found more.
It amazes me that she lumps all this information together – as is clear by the part quoted – and seems to think no one will notice the discrepencies. But then she believes parents are so desperate for answers that they’ll take what she writes and consider it truth – even though dates and information are wrong.
Oh, my. I have put of reading this book but finally checked it out from the library on CD. I don’t feel I can say anything about it till I read it. It sounds like I will be in for a real frustrating “read”.
Actually, the book was way more FUN to read than many, which is why I actually finished it… and if there was a ghost, he/she did a great job of capturing Jenny’s “voice.” But that’s the writer in me speaking!
From an autism/accuracy perspective, there are some very troubling issues. And most concerning of all, to me, is that (for reasons that are unclear to a middle-aged person who never even heard of Jenny McCarthy until this year LOL!) women across America seem to absolutely adore Jenny! As a result, her word is taken over that of any actual, credentialed expert… her “mommy instinct” is held to be more trustworthy than hundreds of studies… and her observations are cited back and forth as absolute truth on listserves and forums and blogs around the world.
I can’t fault Jenny for being popular, for writing a book that reflects her personal perspectives, or for publicizing her book to the best of her ability. I certainly can’t fault her for using her “natural talents” to raise money and awareness. And after all, she’s not a researcher: she’s a celebrity, a mom, and a “personality.”
But I’m afraid that, without intending any such thing, Jenny may have caused a huge number of parents to start down the wrong roads, share misinformation, spend untold millions on snake oil, and generally misunderstand what’s going on with their kids…
Strange world we live in.
Lisa
(autism.about.com)
So they were giving 2 year olds tablets, huh? There’s a blue sprinkle cap, OR a blue tablet, or a yellow tablet of the same medication, OR a yellow chewable that they like never use because it speeds up liver metabolism, OR a yellow one that can’t be chewed, OR another yellow one that they NEVER EVER use because it eats blood, and I can think of exactly 2 white ones, one of which is a tablet, the other of which is a chewable tablet that speeds up liver metabolism and wouldn’t be used with one of the yellow ones because it’s the same medication.
No way in hell they’d start a kid on 3 meds, no way they’d expect a kid that young to swallow pills, and no way a responsible mother would only know them by the colors. It’s real sad that I have a better guess at what he was on than apparently she does.
(oh yeah, and one of those yellow ones and one of those blue ones, the ones that are the same? They were brand spankin new when I started them in 2004, as an ADULT).
This is “Louder Than Words”, but seems to apply:
“Science for Celebrities”
from Sense about science
Links about the campaign, celebrity gaffes and inaccuracies illustrating why such a campaign is felt to be needed, and a brochure of where celebrities can fact-check before going public.
Charity director Tracey Brown said: “All year long people send us frustrating examples of celebrities promoting something that makes no sense. Once it’s done, it’s really difficult to undo.”
http://www.senseaboutscience.org.uk/index.php/site/project/132/
Sorry, I meant PRE-”Louder Than Words”, but the rest stands.
Looks like I needed a little editing myself :-/.
Regan, thanks for that link—-I remember a few years ago people were wishing that “some big name” would have an autistic child. I guess someone could write an interesting case study looking at what (mis)information gets spread after celebrities “speak up” about science.
Lisa Jo: I had vague memories of McCarthy from the era of MTV. When I saw her in Atlanta at the National Autism Association conference, she had a microphone and was interviewing parents about vaccines and their kids and thoughts of VJ’s in Malibu (or some other California beachy spot) holding out the microphone to bikini and swimtrunk clad coeds kept coming to mind—-a little surreal!
Just wondering what interaction would be best for my step-son as he seems to only be comfortable watching “mighty machines” and it really makes him happy but the fact is he needs more expansion with his mind to go beyond tv. We only get him every second weekend so trying to enstile new things seems to be difficult. any ideas?
I can’t fault Jenny for being popular, for writing a book that reflects her personal perspectives, or for publicizing her book to the best of her ability. I certainly can’t fault her for using her “natural talents” to raise money and awareness. And after all, she’s not a researcher: she’s a celebrity, a mom, and a “personality.”
Nobody is faulting Jenny for being popular. She is faulted for exploiting parental fears, and recklessly misleading them with bad information. No, she’s not a researcher, and that makes her shtick all the more egregious. Jenny McCarthy’s sole cause is Jenny McCarthy awareness. Autism is nothing more than her ticket off the Hollywood D-list. She is truly sickening.
Thanks for the feedback on this book. I read enough to know I am not interested, and never was really. It was more of a curious nature.
I was writing about autism back in Jan of 2000.
I got the diagnosis for Nck in June of 98 and used the fax back system for ASA to get my reading material. Matt was dx in Feb of 99 and I used the regional center library for my reading materials. I got my computer (A gateway astro) in Dec of 99 and joined Epinions.com in Jan of 2000 and started writing. I was in a mail group, (which is now yahoo groups and I forget now the other two names before yahoo took them over) that discussed the first autism rally in DC. I had issues with a lot of how they organized things and was very vocal. Several names back then are still visible in the autism community.
My first writing on autism – I never updated it after 2000 to see how my writing has changed over the years:
http://www.epinions.com/kifm-review-22D2-255A6F3-389321CA-bd3
I was watching yesterday the ABC GMA video with Kim Stagliano and her family and some special needs atty. I was surprised when she mentioned google and Jenny Mc Carthy. There was no need for that.
http://www.ageofautism.com/2008/03/good-morning-am.html