6/09/2010

Remaking Images (and letting the dumbass shine through)

This was in my email inbox:


Since when has Generation Rescue been that? I have an image of a movement in my mind in relation to this.

And this nugget: "With some of the top scientists in the world, Generation Rescue’s research mission is dedicated to finding more of the causative factors and treatment approaches for children with autism."

Generation Rescue makes over its image more than McCarthy remakes her own.

The second arrow is to a CNN report stupidly titled "5 toxics that are everywhere: Protect yourself" by the senior medical producer for CNN. I get that language evolves, but toxic is an adjective. Toxins is the noun. Maybe the article is chock-full of good information, but you'd never know it from the title alone, which screams dumbass to me.

Speaking of that, I had the tremendous misfortune to read AoA's Katie Wright's piece yesterday. 

Maybe she's the queen of hyperbole, but no one, and I mean no one, feels the need to go "really?" to this line: "Anyone who has seen his or her child’s diarrhea burn a hole through a rug or a car seat knows what I am talking about"?

Yeah, let's say you're being serious. Let's give you that. Let's say you literally mean that the poop burned a hole through a rug. Your kid's colon, rectum, the skin on his tiny little buttcheeks, how are they? They good?  No problems there? Because if the poop was truly, truly acidic enough to burn through carpet, it did significantly more damage to your child. 

Wright doesn't write this once. No. She does it twice: "His bowel movements were so much less acidic and lost their power to burn through rugs."

And, again, no one questions it. No one. She writes right after the burning diarrhea: "This isn’t about regular constipation either- ASD kids have been known to go weeks without a bowel movement. It’s incredibly painful and disabling."  Which is it? Well? I'm trying to figure out what parent lets a child go weeks without a bowel movement without giving them prunes, adding fiber to their drink, doing something. I don't get it. I really don't. I don't get exaggeration to make a point (and I don't have any sense that this is what she's doing here, either). 

I just don't get it. How GR can make the claim of top scientists without wetting themselves. How anyone can read top five toxics and not think, really? How anyone can read claims of carpet burning bowel movements and not question the claim.

*and yes, yes, I do feel better having let a little bit of snark out. :-)

11 comments:

David said...

"Anyone who has seen his or her child’s diarrhea burn a hole through a rug or a car seat..."
Makes me think of the "Alien" movies...

kathleen said...

Yeah the burning holes through rugs and car seats really perplexed me too...but the not having a bowel movement for a month? Perhaps that's genetic...I mean if the parent is full of shit-it just stands to reason...

Mom26children said...

Generation Rescue relies on propaganda and intimidation...
I mean, really, if poo can burn a hole through a rug...these kids would have perforated bowels, which is deadly...
but, Kathleen...
I totally get the full of sh*t remark...makes perfect sense to me....
And on that note...these children would have to be hospitalized if they went more than 7 days without a BM...sheesh!!!

farmwifetwo said...

Well, it didn't burn holes through the diaper but it did leave vicious bleeding bum rashes that the Dr kept telling me was teething and that the Dev Ped told me was "some children with autism are like that"... Where everyone ignored the family history of IBS, the fact my bro can't have dairy and geez.... Guess who couldn't either... He can now have some dairy, we've been taking it slow for about the last 18mths.

So, no I'm not anti-diet, and yes it made a huge change in gross motor development, falling with hands out instead of falling face first - once into the fireplace, once into the greenhouse forms.

But see, I'm one that realizes that it isn't the same with all. My younger son is still on laxative. Dairy removal made no difference and he's the autistic one not the NLD one.

What I do wish is that they would actually treat those with stomach upset. That in those research studies they actually take the children with stomach upset and try food removals and see if it helps. They don't, for one reason only, they don't want people claiming it's a cure and that's wrong.

It wasn't a cure, he's still NLD, moody, anxious, self-absorbed, poor short term memory, would live his live in a same thing day in an day out routine if I didn't keep it mixed up.... But, it certainly made him feel better, cleared the fog - can you just imagine the daily gut pain or migraines?? - and isn't that all that matters??

As for GR... Jen McCarthy... says it all. BUT, I do find it ironic that the "onliners" those that have written articles and books and blogged forever who have also learned from "Google U" and are not autistic specialists think they are better than her or I or anyone else that has a child with autism. No, different, different opinions, different view points... but not "better" nor right.

KWombles said...

FW2,

That's precisely the point, isn't it? Instead of focusing on the child, who would have been significantly harmed if the stools were, indeed, that acidic, the focus was on carpets.

Instead of calmly, truthfully discussing issues over there, they stretch the truth until it can no longer be found.

And, yes, because do live daily with intestinal distress and with frequent migraines, I can absolutely imagine what that does to a person.

I doubt the researchers place those children outside of the study because of nefarious reasons but because the argument is that gfcf cures autism. Bowel problems are not autism. What would be helpful is a study of autistic children with bowel issues who are placed on gfcf diets to see if it improves their bowel issues.

christophersmom said...

I enjoy your blog but I don't think we should be picking on Katie's description of her son's diarrhea. If it burnt through the rug or not, it's irrelevant. The child does have severe GI problems, and I don't feel comfortable joking about it, even if the target is his misguided parent.

It would be more important to discuss if her point is valid or not: should the researcher have included children with bowel problems in the study or not? I suppose Dr. Hyman wanted to see if the diet would benefit kids who don't have obvious GI distress to test the claims that GFCF benefits any person with autism.

KWombles said...

I'm not trying to make light of her son's distress. In fact, my point was that if her description was accurate, her focus was in the incorrect place: on rugs and not on the damage that highly acidic BMs would do to the child.

I was also pointing out a parent who allowed a child to go weeks without moving his or her bowels is negligent.

While I am in no way making fun of her CHILD's issues, nor am I making fun of Wright, I am interested in accuracy of descriptions. AoA has a tendency to make things up, to stretch the truth, and to get it flat out wrong all while knowing they are wrong.

My point is that there is no way that her description is accurate without her son having significant harm requiring immediate medical attention.

No one called her on her inflation. If she inflates this and she inflates the numbers(something I've covered before), then anything she writes is suspect. She has a tendency either to engage in deliberate falsehoods or to unintentional inflations due to a poor ability to reason. Either way, does it really matter if nothing she writes is accurate?

So, you have hyperbole. You have inaccuracy. And you have uncritical readers and commentators lapping it up and praising her for it.

How does this help a single individual with autism? How does exaggerating the degree of intestinal distress actually help the child?

When we inflate, when we increase the degree of difficulties or health issues our children deal with, we lessen their very real issues. It's disrepectful to the person who actually has the condition.

KWombles said...

The argument regarding gfcf is the debunked opioid theory. Including kids with known GI issues would confound the results.

What needs to happen is a separate study looking at children with GI issues to see if the gfcf diet lessens the severity of GI issues.

Then a study looking specifically at the subset of autistic children with ASDs and GI issues to see if the gfcf diet lessens GI issues and also reduces ASD behaviors.

christophersmom said...

I find Katie to be extremely annoying, and even worse is how the AoA readers worship her (no doubt because she's rich and influential). I agree that she distorts the truth. But I'd just let the "burn through rugs diarrhea" hyperbole pass.

The other interesting info about the study is the initial participation of Karyn Seroussi and the fact that she ended up being fired from the team. They probably realized she had a conflict of interest and was trying to take over the study so they got rid of her. I wonder why they thought it would be a good idea to hire her in the first place.

KWombles said...

Well, if it's hyperbole and meant not to be taken seriously, then it can be ignored in that she wasn't being literal. Usually, though, we signal we are exaggerating for effect, and we don't repeat it twice, but, yes, there are more important, intriguing questions here, like Seroussi's initial involvement. I've been trying to track down the whole nutritionist claim to see if Seroussi actually has any credentials and any training. Of course, she's not claiming dietician status, and anyone can claim to be a nutritionist.

Science Mom said...

As for GR... Jen McCarthy... says it all. BUT, I do find it ironic that the "onliners" those that have written articles and books and blogged forever who have also learned from "Google U" and are not autistic specialists think they are better than her or I or anyone else that has a child with autism. No, different, different opinions, different view points... but not "better" nor right.

This is another area where you continue to fracture the autism community and disenfranchise yourselves. Being a parent of an autistic child does not make you an expert on autism; you are more attuned to YOUR child. It is also positively ridiculous for you to dismiss appropriately educated experts in the field of autism research because they don't have autistic children.

Keep holding out people like Jenny McCarthy as shining examples and you will be met with condescension, with good reason. There are not equally valid opinions on this.