Not so long ago, a friend sent me a link about Jenny McCarthy being upset that McCain "snubbed" her by not meeting with her. She had been excited initially because he apparently said he believes there is a connection between the thimerosal vaccine and autism, as she does. And about a year ago, one of my email autism groups went wild as they all ran out to buy her book, expecting miracles. (And now she has a new book out, too.) While I appreciate the vigor with which she wants people to believe there are biomedical therapies for autism, her assumption is that all autism is caused by biomedical triggers such as vaccines.
Right now the Parent Bloggers Network is reviewing " Autism's False Profits," a book by Paul Offit in which he dismisses any vaccine-autism link. I read his book Vaccinated and had participated in a conference call during the "Every Child by Two" campaign. I was shocked at how staunchly he stood his ground that any parent who wishes to spread out vaccines or otherwise wants to be cautious is naive and stupid.
What do McCarthy and Offit have in common?
The assumption that autism is black and white.
And with their assumptions, they create a situation where people who have experiences different than they do are considered lazy or stupid. In the case of McCarthy, parents whose children aren't "recovered," simply haven't tried hard enough. In the case of Offit, parents who spread out vaccine schedules or witness their children's regressions post-vaccine are misled and otherwise naive.
Squid wrote yesterday, "Why Don't We Want to Recover Leelo?" about her eight-year old son. Her post is a concise explanation of many of the same things that I believe.
Just as "cancer" is a term used to describe many types of tumor-generating processes, so are terms like "autism" an umbrella description of symptoms rather than underlying causes. (But the public at large doesn't understand that.)
Diet changes made a big difference for the Cat and he does regress after vaccinations (yet he is fully vaccinated because I understand herd immunity and societal responsibility in that regard.) But by all means, I don't think that a diet change, something dangerously scary to me like chelation (which apparently has worked miracles for some folks,) avoiding vaccines, or other biomed type treatments will guarantee "recovery."
My thought is that someone like the Cat is genetically susceptible to certain stimuli (as many sensory-integration type kids are,) so it makes sense that they may have difficulty around those things which their body doesn't tolerate well. My son isn't "recovered," we've just found some things that can cause some rather unusual reactions, so avoid those things.
My son is certainly quirky and still has behaviors that would place him on the spectrum, but his prognosis is vastly different than what the doctors predicted when he was younger. Not because we are heroes, but because we got lucky: we found things that worked for him.
Not all "autism"-like symptoms are caused by the same thing. And so of course not all treatments will work for every kid. Paul Offit, Amanda Peet, and Jenny McCarthy seem to believe in extremes. People like to categorize: put things in neat little boxes without all those "exceptions to rules," but quirky kids have quite a lot of "exceptions" by definition.
Why can't we just accept that people are unique individuals? The diagnosis of "autism" can mean many different things, but the individuals with that diagnosis have vastly different reasons for having the diagnosis, and different ways of living with it and/or avoiding certain symptoms.
This means that not all kids with spectrum-like symptoms can be "cured" by any one treatment. But it means that some may improve with "controversial" treatments like diet. These improvements can be dramatic.
This means that not all children will be harmed by vaccines. But it means that some sensitive individuals may have a very negative reaction to vaccines; short-term or long-term. These regressions can be dramatic.
Shades of gray don't make headlines or inspire people to action. It is tough to build a campaign around something that isn't one-size-fits-all. So McCarthy and Offit have instead stuck to a simplistic view: the one of absolutes. But autism is so much more sophisticated.
Comments (8)
You were actually the only one with a child on the spectrum who volunteered for the campaign. The client didn't decline you - we just had an overage.
And I know you would have given the book a thorough and fair review. By no means did I want to stifle your POV, and I hope it didn't seem like that.
Anyway, I think you make a great point about categorization. I recall reading a book by Michael Shermer in which he said it's basic human nature to do that. But like you, I resist the boxes!
Posted by mothergoosemouse
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October 24, 2008 7:09 PM
Posted on October 24, 2008 19:09
Thank you for the clarification MGM.
See - I made an assumption. And see what happens when folks make assumptions. :-) Ooops!
I thought perhaps Christina or Carmen had been asked to do the campaign - and I know we have some PBN bloggers whose kids have sensory issues, so I was a bit surprised that those who have reviewed thus far don't have experience in that area. (Although I've enjoyed reading their reviews!)
My thoughts still stand - though - that I fear that Offit's POV is one of an absolute. I enjoyed reading "Vaccinated" - but part of my enjoyment of that book was that the autism part was so small - I was allowed to read about the subject in a general way without feeling judged, whereas his newest book addresses the topic head-on.
Thanks again for the correction.
Posted by Karianna | October 24, 2008 7:28 PM
Posted on October 24, 2008 19:28
Thank you for this post, and I agree with you entirely. Autism seems to appear differently for every child, so it only makes sense that what works for one child may not work for another, and the cause of one child's autism might not be the same as another child's.
I think I was offered the chance to review the book, too, but I declined. After the one phone call I had with Offit, I already knew much of what the book would say, and didn't feel like dealing with his condescending attitude.
Do I think vaccines cause autism? I have no idea. Do I think it's possible? Absolutely. If you look at all of the other confirmed reactions that can occur from vaccines - including death - it seems possible autism could be one of those rare sensitivity reactions. (The National Vaccine Injury Compensation Program has a lot of info on this: http://www.hrsa.gov/vaccinecompensation/)
I also believe in vaccines, but I am delaying and spacing out the vaccinations Mira gets only to play it safe. In the end, she'll still have all of her necessary vaccinations, so why must some people accuse me of being a stupid or neglectful parent because I choose to take a little longer? It's crazy, and you're right - this condition is not black and white.
Posted by Christina | October 24, 2008 7:35 PM
Posted on October 24, 2008 19:35
Thanks! I figured you had been offered the book, but wasn't sure... And MGM just said no other spectrum folks said they wanted to review it. So my guess is that if any were offered, they declined like you. I corrected the bit where I thought it was the Offit people doing the declining.
I was on a different call with him, and thank goodness he wasn't addressing me directly, because he is definitely forceful. He is looking at things from such a simple viewpoint and assumes that parents of kids on the spectrum are complete dummies, when he's the one showing inflexibility.
Vaccines are amazing things. They are vital. But the particular vaccines we give, the timing for which we give them, the multiple vaccines to ensure immunity when it is likely immunity was already obtained, all these things are worrisome. It is short-sighted to say vaccines cause all autism. But it is also short-sighted to say that vaccines have absolutely NO affect on genetically susceptible kids.
Thanks Christina!
Posted by Karianna | October 24, 2008 7:46 PM
Posted on October 24, 2008 19:46
Great post Kari, spoken both as a mom and as a treatment provider. Cause and effect is a tricky and illusory thing. Autism is on a spectrum with so many differences within the diagnosis that some people are skeptical even about the dx itself! Far out treatments of virus' or disorders are things that each parent has to weigh the consequences, pros and cons of. I imagine that what we know of these so called treatments are only what some investors want us to know exactly the same as the vaccine folks or limited by the flaws of research or limited in that they may work well for some but be irreparably harmful for others. The path of parents who are desperate for answers and 'cures' in their fear and grief can be dangerous at times. There are those treatments and approaches that are 'fringy' even for Down Syndrome people. Acceptance is an important part of what is struggled with or how are our kids supposed to be happy with themselves?
Posted by starrlife | October 24, 2008 9:58 PM
Posted on October 24, 2008 21:58
excellent post
Posted by feener | October 25, 2008 6:46 AM
Posted on October 25, 2008 06:46
Great post. I too think AUT is caused by many different things and therefore the treatment isn't going to be just one thing for everyone. It's one reason why I'm a fan of ABA - it's individual, created for the individual with analyzation for the individual. (And by ABA I don't mean just the 1:1 at a table, I mean the entire package).
Posted by Robin | October 25, 2008 7:03 AM
Posted on October 25, 2008 07:03
Did you end up reading the book anyway? You still should give it a chance! I'll mail you my copy if you want it as soon as our speech therapist finishes devouring it.
Chelation killed two children last year, btw.
Posted by Monica | October 25, 2008 8:02 AM
Posted on October 25, 2008 08:02