6.25.2009

Mother Warriors: The Extended Review

This is a long post, but one I hope you'll pass on to help debunk the image of Jenny McCarthy as a reliable source of general autism information and support, while spreading the word about hope and resources for ALL autism families.

"But vaccinations cause autism. Sure, science says otherwise, but Jenny McCarthy has some real convincing anecdotes.” -
The Onion

Jenny McCarthy's son was not only diagnosed with autism, but had severe, life-threatening seizures. Through medical intervention, applied behavioral analysis (ABA), and other therapies, he is now doing much so much better that his mother describes him as "recovered" from autism and calls him a "poster child for hope." When she went on Oprah and described the symptoms of autism, parents across the country were able to give their quirky children's behaviors a name, and start getting those kids help.

I am grateful to her for helping those families, and I am glad for her and her son -- as are most autism families I know, because we crave success stories and the hope they bring as much as we crave our children's happiness. Parenting these kids we love so much is rewarding, but it can also be devilishly challenging, and we need role models to replenish our hope reservoirs, frequently.

Ms. McCarthy could have been autism's true hope-bearer. She could have used her visibility to create and promote books full of resources and ideas for helping all families with autism, telling us to never give up hope, to focus on loving our kids whether they respond to therapies or not, while including a chapter or two about alternative treatments that seem to work for her son and some of his peers.

Instead, she produces books like Mother Warriors, about how she and other parents rescued their kids from autism using expensive and time-consuming biomedical diet and supplement methods that won't help most kids on the spectrum, portrays pre-"recovered" children in a very negative light, and gives parents of newly diagnosed autistic children false hopes of recovery. Not real hope. False hope. That, and misinformation, are what Mother Warriors is full of, among other things.

Reading Mother Warriors is like listening to a college sophomore try to recruit campus freshman to Earth-First!-style environmental activism. Yes, she is sincere. Yes, the stories that keep her going are heartbreaking. Yes, we need to challenge some industry professionals to change their thinking. Yes, she is walking the walk, and taking action.

Yes, she is totally naive, in thrall to extremists, making a good cause look bad, and could possibly get people hurt.

Ms. McCarthy believes that her version of autism is reality, but instead of supplying any kind of non-testimonial documentation, she uses emotional manipulation, pop psychology, ratings numbers, and bullying -- not evidence -- to support her assertions. She shouts, "[My child] is my science!" when confronted with contradictory evidence, considers being on Oprah the ultimate validation of her "truth," declares that The Secret helps her to be a better autism parent, and thinks that yelling the loudest is an appropriate debate technique.

She also insists, as do many of the parents in this book, that she saw her child disappear and regress after his vaccinations. None of the parents in this book will consider that their child's regression and the timing of the vaccinations might be a coincidence:
"Yet, speculation that shots cause autism continues to stick in parents' minds. Why? One big reason is because we have all heard reports of kids suddenly "got" autism just a week or two after shots.

"In fact, one of the scariest characteristics of autism is that it can suddenly afflict a child who seems developmentally normal. But, is it possible that this sudden problem right after shots is just a coincidence? Absolutely, yes! Every day, serious and amazing things occur, purely by chance. Think of it this way, in a large country like the US, a one-in-a-million coincidence happens 300 times a day.

"Approximately 24,000 children are diagnosed with autism every year and in about 1/3 of those cases (8000/year...150/w) normally developing kids show abrupt deterioration (so called "regressive" autism). Regression usually appears between a child's 1st and 3rd birthdays, a period during which they get shots 4 separate times. Do the calculations and you quickly realize that, every year, over 600 children will spiral into autism during the four 1-week periods that follow these 4 shot visits... just by pure, utter, random chance."

-Harvey Karp: Cracking the Autism Riddle: "Vaccine Theory" Fades as a New Idea Emerges
All Ms. McCarthy had to do to give this book some legitimacy was to state, upfront, that some kids diagnosed with autism have other medical conditions that need addressing, and that when some of these kids become healthy, they seem to lose their autism diagnoses. She should have had a front-and-center checklist of symptoms to watch out for, if children are to be candidates for biomedical approaches: uncontrollable diarrhea, severe insomnia, adverse vaccine reactions, etc.

She should have said, on the first page of the first chapter, that even though she has encountered many success stories, the biomedical approach doesn't work for most families with autism: information she acknowledges but buries, in one paragraph on page eleven, and another on page 140. All the other pages of the book are dedicated to telling us how all kids with autism -- not those who have serious illnesses coupled with an autism diagnoses, but all kids with autism -- should at least try the biomedical approach.

The children in this book are not like most of the autistic kids I know, kids who did not regress into autism, many of whom are almost supernaturally physically healthy (my own son used to be a barfer, but that was due to intolerance of the antibiotics for his frequent ear infections. Once he got ear tubes put in and the antibiotics stopped, so did the barfing). Our kids contrast with the children featured in Mother Warriors, who all have gastrointestinal disorders, seizure disorders, family histories of immune disorders, or bad reactions to vaccinations.

I do believe that successfully treating these illnesses might lessen children's autism-like symptoms. Adults with conditions like ulcerative colitis, a large intestine disease similar to the leaky gut syndrome cited by several Mother Warriors parents, say that their pain can be excruciating, and leads to extreme irritability and mood swings. Intense pain could cause autistic-like symptoms and developmental delays in a baby or very young child. It is also a condition that is helped by trial-and-error dietary modification, in some cases a gluten-free, casein-free diet.

The one Mother Warriors child who didn't seem ill is a girl whose developmental trajectory mimicked that of Catherine Maurice's daughter in the classic story of autism recovery, Let Me Hear Your Voice. You know, the girl who regressed into autism and was recovered by ABA therapy while using goldfish crackers as reinforcers? It is difficult to take biomedical and wheat-free dairy-free diet claims seriously in that warrior mom's case. (Of course, almost every last kid in Warrior Mothers also had ABA therapy, but ABA is infrequently mentioned as a contributing recovery factor.)

The author skews her book in other non-inclusive ways. She lists no resources other than a directory of DAN! doctors, a few things that she wants you to buy: her DVDs, hyperbaric oxygen tanks, infrared saunas, etc., and a page about her and Jim Carrey's cult-like autism organization, Generation Rescue. Why doesn't she list any ABA resources, non-DAN! developmental pediatricians, autism research & support agencies, parent organizations? There are so many places online to send autism parents for help and support, but no one looking to this book as a source of general autism information would know that.

Specific instances of additional skew:
  • She lets Dr. Jay N. Gordon, who wrote the introduction, embarrass himself by citing the continuously-debunked vaccines-causes-autism myth and alluding to the not-autism Hannah Poling vaccine injury compensation case.
  • She lets a father justify the use of the anti-viral Valtrex on his autistic child by describing studies of post-viral autism-like regression in adults, without a single footnote or citation to back up his claims.
  • She lets another parent describe how vaccinations stole her child's words, then later contradict herself entirely by talking about that same child's severe apraxia of speech, a motor planning disorder that is either present at birth or the result of stroke, tumor, or other brain injury.
  • Several of the parents blame mercury in vaccines for their children's autism, without bothering to make a distinction between the non-bioaccumulating ethylmercury that used to be in vaccines, and the Minamata-disease-causing methylmercury everyone thinks the parents are talking about.
  • She states that "No one ever talks about the [autism] siblings." Right. She's the first person who ever thought of them! Except no, no, no, and no.
  • Eighty percent of autism parents' marriages end in divorce. Also a no.
  • No one is studying biomedical approaches to autism, or vaccine-autism links! Absolutely untrue.
This massing of misinformation is so intense that Mother Warriors stops being a book and becomes a crusade. Fact-checkers must have either fallen on their swords, or were not invited along. And I sometimes suspect that our author did not graduate at the top of her class at The University of Google.

Other areas of the book go beyond faulty research or bad judgment, and into irresponsibility. By including the story of a family whose child died from a possible adverse vaccine reaction, Ms. McCarthy is stooping to emotional exploitation. No one can deny that bad vaccine reactions do happen; they are the reason the Vaccine Injury Compensation Program (VICP) exists. But whereas this family's poignant story should be used to educate parents and doctors about exercising caution after adverse vaccine reactions -- the child had a severe seizure after a vaccination, but was vaccinated again, and had another bad reaction -- instead the author places the story in a biomedical context and has likely scared untold numbers of parents out of immunizing their kids. Do you know what happens kids stop getting vaccinating? They start to get sick, and some of them die. Just like the child in the story.

But facts and statistics aren't going to terrify new recruits into joining Ms. McCarthy's cause. So of course she's not going to say that it's much more risky to put your baby in a car seat and drive them down the street than it is to vaccinate them. In the past 20 years, U.S. families have filed 11,970 vaccine injury and 1,006 vaccine-related death claims (note that these are for adults as well as children, and are for claims filed, not claims verified and compensated). In one year, 2005, car crashes injured 184,000 children under 14 and killed 1,335. If your child has an adverse reaction to a vaccine, then you should devote your energy to investigating why, getting answers, blocking decisions you're not comfortable with, and encouraging other parents to vaccinate their kids, so herd immunity will keep your vaccine-averse child healthy.

Another distressing book theme is the assumption that parents who are truly dedicated advocates for their children will be able to somehow pay for all of the approaches this book recommends. Biomed is pricey and time-intensive, even if you just go for the GFCF diet and a few supplements. If are convinced you need go for the Mother Warriors gold standards, the DAN! doctor and resulting multiple supplements, medications, possible even chelation, and add on the hyperbaric oxygen treatments that every other person in the book cites as miraculous, no wonder you have parents in this book stating that they'd sell their houses, go into debt, don't care, need to recover their kid at any cost. But what about people who don't have a house to sell, or who are already in debt? Where is the resource section for the desperate parents who want to listen to Ms. McCarthy, but can't afford what she's selling?

Mother Warriors would not deserve this kind of drubbing if its author wasn't smacking down naysayers at every opportunity, unwittingly or knowingly spreading falsehoods, or had been guided by a clearer head. But, on top of all its other failings, this book is so badly organized that the best information (e.g., her p. 141 recognition that some kids don't recover and their parents are okay with that, and some recover with ABA therapy alone, but some kids are sick and those are the ones she's trying to reach) is buried. A good editor and one week's work could have transformed this book into one ten times more useful. And surely someone at Dutton could have spent a day at Ms. McCarthy's own online alma mater, and realized how much of the book's information doesn't hold up?

Even though the damage Ms. McCarthy is wreaking on my son's peers, their potential, and their families irritates me, I cringe when people take potshots at her because of her background as a TV personality and Playboy playmate. Her former career has no bearing on her experience as a mother and an autism activist. But she can be criticized for her lack of critical thinking skills and unwillingness to help the kids whose families don't or can't buy into her largely spurious autism recovery campaign.

----

P.S. One veteran mother talks frankly about her adult autistic son having adult sexual needs, a topic which needs more open discussion. However, that mother takes care of her son's needs by providing sex workers (a practice I am neither addressing nor condemning). That mother needs to give her son the benefit of the doubt, and learn more about autism and adult relationships.

8 comments:

  1. Fantastic review! I plan to share it widely.

    Oh, and my absolute favorite line? "And I sometimes suspect that our author did not graduate at the top of her class at The University of Google." No duh. ;-)

    ReplyDelete
  2. Anonymous12:00 PM

    Aah, the love story, in the glamour link is sweet. And, unlike similar stories, for example, with adults with Downs, it manages not to be patronizing.

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  3. Anonymous12:17 PM

    I've been talking to people about the vaccine/autism link for a long time. I'm extremely pro-vaccine (I come from a country where people die from preventable illnesses) and I was making the decisions about vaccinations just about the time that the (false) links were penetrating the public views. What I learned though, was that the data that convinced me to vaccinate wasn't what worked with others. That in turn, taught me that when I'm talking about these sensitive topics, I really need to understand the values/views that motivate the people I'm talking to.

    I recently stumbled (at your site) on a letter that Leelo's grandfather had written to you when you were exploring the DAN treatments (followed by Leelo's dad's response). I don't know how recently you've re-read those posts, but I think reading those contemporaneous records of your own exploration/eventual transformation to the place where you are now might help you in guiding other people?

    I'm commenting with this sentiment, 'cause reading those old posts, and knowing where you've come help me in talking to other people who are still early in their journeys.

    bj (same anonymous as above)
    (and, I have neurotypical children, so what I read and learn is my source for information)

    ReplyDelete
  4. @niksmom: Praise from you is very much appreciated. Thanks.

    @anonymous: I love that story, too. You can follow Lindsey on Twitter at http://twitter.com/AutismIsARose/

    @bj: Your perspective is an especially valuable one, as many Americans of childbearing age are Doubting Thomases because they've never encountered the diseases they need to vaccinate their children against. What country are you from?

    Funny you should mention how my perspectives have evolved, as that's going to be my Tuesday 6/30 BlogHer post. :)

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  5. Thank you for this. I knew it was going to be good, following your tweets as you were reading the book. I have already emailed the link to your post around and am glad to have it handy for the next umpteen times that the book is recommended to me. I read it too (free copy via local publicist for the publisher) and the stories, especially the last one, aside from the misrepresentations and inaccuracies, felt horribly voyeuristic and exploitative to me -- as if the pain and suffering of others were being described in lingering detail for the horror and thrill of readers.

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  6. Anonymous10:36 AM

    "What country are you from?"

    India.

    ReplyDelete
  7. Another excellent post I'm about to link to. I particularly like the fact that as a feminist, you addressed the Playboy Playmate comments. Those annoy me also. Her experiences don't invalidate her. Her lack of clear thinking and disingenuousness do, and they're dangerous.

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  8. Anonymous9:20 PM

    What a great review of McCarthy's book.

    What fascinates me about McCarthy is how she has never been questioned about her earlier allegiance to the Indigo Child Movement. She was once their spokesperson and ran her own site, blogging that autistic children are at the vanguard of the next step in human evolution. How can anyone take this woman seriously?!

    ReplyDelete

Respectful disagreement encouraged.

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