March 17, 2009

Did Jenny McCarthy cure autism?

This week's theme for Heads or Tails Tuesday is to "Make any kind of post using "Point" as your prompt. You can point something out, get to the point, make a point, etc." I've had this post in the works for a while, I'm going to point my finger at Jenny McCarthy, and point out the good and bad parts of her latest book. I also want to make a few points about how her experience with her son's autism might differ from that of a "regular", average mother. So... let's get on to it!

I recently read Jenny McCarthy's book "Louder than Words." I was interested in reading the book for several reasons. One is that I had read her book "Life Laughs" for my book club, and in that book she talks a lot about her son's autism because during the time she was writing that book is when he was first getting diagnosed and treated. Another is that I know that McCarthy claims that her son's autism is cured, and that rubs some people the wrong way. I wanted to know if she really thought her son was cured, and hoped to get more insight into what things were like for her. I am also generally interested in autism. It's an interest I've had for a little while, and I am definitely curious about the increasing rates of autism. I've referred to it before as the "new ADD" - a few years back that was the big hot button thing that kids were getting diagnosed with. Now, I know that as soon as a kid doesn't start talking by the time they're two, they start to worry about autism.

McCarthy's journey into the world of autism began when her son Evan was only 2.5 years old. He had his first seizure and didn't ake up for 7 hours. He was misdiagnosed with febrile seizures (caused by a high fever) and discharged from the hospital before he could even walk on his own. After that, he started to have vertigo and horrible tantrums. Three weeks later, he had his second seizure. It threw him into cardiac arrest and he required CPR. He was having continuous seizures and was given valium for several days. After 5 days in the hospital, he was misdiagnosed with epilepsy. He was put on a seizure medication and the tantrums continued, accompanied by violent outbursts and screaming until he passed out. The next medication caused him to stop talking and he became a doped up zombie.

McCarthy talks a lot about her mother's instinct - how she felt, that she could tell the doctors were wrong, and that she felt connected to her son. This is the point in the story though where McCarthy's story diverges. It becomes tinted by the privledges she enjoys as someone who has money and who has connections and the ability to get care and attention that a normal mother probably wouldn't. She is able to get in to the top Neurologist in the world through a connection with her new agent. The neurologist diagnoses Evan with autism.

At this point, McCarthy realizes there were signs before, the things she thought were quirks were actually signs of autism and self stimulation behaviors - hand flapping, wheel spinning, fixation on escalators and memorizing and repeating words, but not coming up with original words on his own. The miraclulous connections continue to be made - McCarthy flies to New York to promote her new book, and the other guest on Regis & Kelly just happens to be Charlie Weis, one of the founders of Hannah & Friends, a nonprofit organization supporting people with special needs. Also around this time, McCarthy discovers "the window". She finds information online suggesting that there is a window of time where agressive treatment can pull a child out of autism. She also makes her first discoveries of alleged links between vaccines (specifically MMR) and autism.

At this point she starts her interventions with Evan's diet and takes gluten and casein out of his diet. The diet made a difference. Her son started to speak more, and when he was given dairy (by his father, while McCarthy wasn't there), he regressed. I agree that if it COULD help children with autism, behavioral issues, or disabilites, doctors should suggest altering a child's diet. Whether or not it cures anything is not an issue, but I believe that we don't think enough about what we're putting into our bodies. Why wouldn't you recommend something that could help, and which honestly in this world is getting easier and easier to maintain? I also think that we should ALL pay more attention tow hat we are putting into our bodies. There has already been a connection made between ADD/ADHD and food dyes/high fructose corn syrup. Eating more naturally is not going to hurt ANYONE, and it just might help something.

McCarthy believes that Evan was born with a weaker immune system and that because of that, the vaccine wreaked havoc in his body and his intestines couldn't process it what was going on. She is definitely in the camp of "vaccines cause autism". I don't believe that's true, however, I think it's unrealistic to say that there is no link there. McCarthy believes that it doesn't make sense to expect ONE vaccine formula to work and be safe for every single child, and that is something I CAN agree with. I don't have an expert opinion here, but it seems like perhaps if a child is heading towards autism already, or already has it, the vaccines can bump it along and make it worse. McCarthy believes that there whould be a test to see if a child's immune system is strong enough to handle the vaccines before they are given, and I can't argue with anything that is going to provide MORE safeguards/caution in treating our children.

Overall, I liked the amount of information McCarthy shared in this book. She gave some good ideas for things you could try. The problem is, for a regular parent of an autistic child, there are other parts of this that are just not feasible. McCarthy sees the BEST Neurologist, the BEST DAN (Defeat Autism Now) doctor, and the BEST Immune System doctor. That's just not an option for 'normal' people. Neither is self-funding autism treatment (such as the program at UCLA) that costs $75/hr ($2250/wk) , paying $150/hr for speech therapy ($4000/wk). Treatment for a preschooler with autism can easily run $50,000 a year. That's more money than many of us make in a year, and also explains why a lot of children with autism are just not able to get the care they should.

McCarthy also talks about God and her faith and her relationship with God. Which is great, however, I could see how that could be offputting for any parent reading this book that doesn't have the same faith. At the end, when McCarthy's son is "cured", I can see someone sitting there and thinking "well, why did God choose her son and not mine?". Talking about how much God did for you, or talking about how her motherly instinct helped her cure her son is a slippery slope. While it's good to have hope, and to try and stay positive, there's a fine line between being inspirational and making someone else feel like you are accusing them of being ignored by God or of not having enough motherly instinct or love for their child.

I don't believe McCarthy's son is cured of autism. I don't think that autism is something you can be cured from. He has been treated, and he is able to lead a more mainstreamed life because of it. However, I wonder where Evan would fall on the spectrum of autistic kids. It just seems like despire the hardships she faced, her story is much easier than most people's stories who are raising autistic children. I know that her son was not as low on the spectrum as Asperger's, but when I hear stories like Kelley's stories about her son, and raising him, it makes me wonder just how severe Evan's autism was in comparison to all the other autistic kids out there.

At the end of the book, McCarthy lists many things she believed would have helped her. I think this can be a good resource, because she points out things like educating yourself. She DOES point out in the end of the book that not all children with autism will be able to make leaps like her son did, but after reading an entire book about those leaps, it might be seen as a disclaimer or a passing thought. She states that when someone from the state came over to re-evaluate her son, they said "This isn't autism anymore. We have never seen a recovery like this. What happened?". It makes me very wary to think of people out there walking around saying "Well, Jenny McCarthy cured her son, why can't I/you do that?" when it just might not be realistic for some/most autistic kids.

This is just my opinion, and I don't have an autistic child, nor do any of my friends. I wanted to include at least a few thoughts from parents who DO. Firstly, there is Kelley of Magnetobold, whose son Boo is autistic. I remembered she had written this post about Jenny McCarthy last year, and here's some of what she had to say:

"So, Ms McCarthy, all the parents without ‘recovered’ kids (apparently Autism is like being hit by a bus, you recover and then you have a little boo boo - WTF!?!?!) just don’t have MOMMY INSTINCT. MI for short. I am sure she has trademarked that one.
OMG. I just don’t love my kid enough."

"My son was diagnosed with Classic Autism. Classic, no language, screaming day and night. I was told he would never have functional language or toilet train. I was told to take him home and love him.

He is now doing amazingly. Thanks to therapy. Thanks to hard freaking work. But he still has Autism. He will always have Autism.

He is not recovered. You cannot recover from something that is - in my view - an inherited neurological condition. Minimize the extreme behaivours, work on other issues. Some kids will respond to therapy, some will not. Regardless of how much MI ™ their mothers have. Regardless of how much they love their child."

I also pulled a couple of reviews from Amazon, but there are TONS more there to see if you're interested in what parents thought about this book.

Amazon - C. Magro says:

Jenny has NO idea on what it is like to be an average person with a child on the spectrum. Nannies, intensive intervention--we don't live in that world. We live in the world of waitlists, minimal services and fighting with public schools.

Amazon - Kate
says:

I have a son diagnosed with autism and have read many books about it. This book was very offensive to me. The author has every right to try any therapy she thinks is helpful to her child but she has no right to judge parents who do not make the same choice. To describe mothers who do not use DAN doctors as huddling in a corner bemoaning their fate because their children aren't getting better is insulting. Treatments for autism are controversial and parents should make their own choices and leave other parents to do the same.

Amazon - Susan
says:

I am a mother of a child with Autism. I am also a Developmental Specialist that works for my state's Early Intervention Program. This book made me sick to my stomach. It was offensive and rude. It was so judgemental to anyone who does not use non-mainstream treatment methods for their child. So much of the literature out there assumes that parents can afford any and all treatments for their child with ASD. Some parents have there hands tied with the financial burden of everyday life so much so that their only options for their child are those offered by their state's Early Intervention and public school system.

FINAL VERDICT: And, after having written all of this, I'm not sure who, if anyone, I would recommend this book to. It's a good read for someone like me who is interested in autism and reading various parents stories about dealing with it. It's interesting in that it describes in detail what her son went through, and I think there are a lot of people out there who don't know what kind of physical medical issues go along with the mental aspects of autism. There are some good suggestions about kinds of therapies and health things to look into for parents of autistic kids, and a couple of book suggestions. But all in all, I don't know how helpful the book would be to a parent of a newly diagnosed autistic kid. I feel like the chances for making people 1. feel like a failure or 2. have false hope are pretty high with this one.

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9 comments:

Dumblond said...

Oh my goodness. Did you ever touch a nerve...
I could go on and on about my oldest nephew (who was diagnosed on the medium side of the spectrum when he was around two) and the struggles of my in-laws (who are most definitely not rich).
I do promote the GFCF diet when I can because it has helped my little nephew so much. But I also know families who have tried it...and it doesn't work the same way.
Kudos to you for reading and reviewing.

Hootin' Anni said...

It's amazing what a diet can do to help the system. I have learned many things with this particular subject...but, it's with the heart related diets. And they seem to work, so I would tend to have to agree with parts of this for autism too...maybe not a cure, but it's a way to help it all. I'm not a doctor.

HAPPY ST. PATRICK'S DAY

Skittles said...

I can plainly see your point here and tend to agree with it.

The "rich and famous" have so many resources available to them the rest of us don't.

A healthy diet is something every parent should provide their children with. Sheesh.

I doubt Evan has been cured. My guess is he's maybe been stabilized.

Tumblewords: said...

Well written review. It always amazes me that people with resources don't seem to consider those without. Fortunately, I don't know anyone with autism but it appears that we need to get our 'health' act together so disease can be treated and damage delayed.

Tricia said...

My daughter goes to school with a boy who is about mid-spectrum and I am amazed at the way the work with him and help him to be more mainstream. I can only imagine that his parents would love to have unlimited resources and access to specialists; but they live in the real world. Amazing how insensitive people in a position of power and privilege can become.

Tabbikat's Thoughts

Edie said...

Whatever McCarthy's son had doesn't sound like Autism to me. Autism doesn't come from seizures and comas. Brain damage does. Some brain damage is permanent and some isn't. Usually a child is developing normally and they start to show obvious signs of regression with no explanation. So her son was normal for 2.5 years, has some sort of brain injury which changes his behavior and after that she says it's the vaccines, which he has been having since two months of age with no changes? She sounds like she's way off the mark to me. I have known many children with Autism, and it doesn't go away.

Kelley said...

I just saw an interview with the woman. I can't imagine reading the book, I would probably lose my voice from all the screaming in frustration and anger.

Great review though babe.

Karen Evans said...

I was a little nervous to read what you had to say about this issue because I tend to believe that there are some neurological conditions, such as autism, for which there is no "cure". I'm wondering if Ms. McCarthy talks at all about where on the spectrum her child falls. It is my understanding that some high functioning autistic children have mainly issues related to poor social skills, such as the inability to read non-verbal cues. I do think that those type of behaviors, with intense therapy, could be dramatically improved, possibly to the point that the child could someday function in a way that they would be perceived more as "quirky" rather than highly different. Perhaps Evan is just such a child.

It will be interesting to see how this child does when he is older, say 13 or 14 and the reaction of his peers becomes more of an issue. I sincerely hope that for all of the parents out there with children diagnosed with autism that Ms. McCarthy is on to something big and that insurance will cover these programs more fully.

Rachael1013 said...

@Karen - After reading the book, and with information that's come out since,
I'm sort of under the opinion (as my Mom, Edie, says below) that her son
doesn't actually have autism. In fact, in February an article an interview
in Time Magazine (
http://www.time.com/time/nation/article/0,8599,1967796-1,00.html) came out
that said that doctors think he may have a different neurological syndrome.

I do hope that parents are able to take a cue from McCarthy in trying some
of these alternative therapies, perhaps there are other children out there
who could be greatly helped, especially if they've been misdiagnosed with
autism.