When it comes to autism, those who chafe at vaccine conspiracy theories and “trapped in their own world” stereotypes and the endless biomed cures du jour may have science (not to mention sanity) on their side.
But step aside, people: Jenny McCarthy is armed with Google, and she’s not afraid to use it.
The model and self-styled actress was on Oprah today to talk about her autistic son, and if you’ve caught wind of her thoughts on autism already (or seen how pretty much anything about autism is treated on the Oprah show), you just knew this could not be good.
No joke: McCarthy was cheered lustily by the studio audience for announcing that, after her son was diagnosed, she typed the word “autism” into the Google search engine, launching a courageous and audacious search for the truth. And what came up? Why, story after story about remedies and recoveries and other amazing stuff your pediatrician is paid handsomely by the CDC not to tell you about.
Luckily, Google employs an army of people whose only job is to make sure everything that pops up on the site is totally legit, although I probably should Google that sometime just to make sure it’s true.
McCarthy spoke particularly of clicking on a link “up in the corner” (I believe those are what are known as “advertisements”) and learning about the wonders of biomed.
In the video clips Oprah showed, McCarthy’s son looked healthy and happy (although there wasn’t really much pre-biomed footage to compare with). And i applaud her for being an apparently caring and involved mom — she’s a convenient target for satire, and maybe she deserves the benefit of the doubt. (Although there was something chilling about the way she described getting an employee of a play gym fired for suggesting her son might have a “brain problem.”)
But here’s a TV show with an audience that’s humungous by any standard — many times larger than all the autism blogs put together. And here’s a celebrity announcing that her “real” son had become “trapped inside” this autistic shell, and that she was hell-bent to “get him out.” (More big cheers.)
And here’s Oprah opening the show by quoting McCarthy’s book (yep, she writes, too!) on the different reactions encountered when people learn a child has been diagnosed with cancer vs. diagnosed with autism. Surprising those reactions are so divergent, because as we’ve been conditioned to learn by Autism Speaks and others, autism is at least as terrifying as pending death.
Oprah also cooed approvingly when McCarthy defended biomed by saying, “Well, chemotherapy doesn’t work for everybody either.”
At least McCarthy didn’t talk about train wrecks. Instead, she talked about bus crashes.
Seriously. She offered an analogy about autism that went like this: “If you get hit by a bus, you’re going to recover. But you’re going to have a little booboo.” (She definitely used the word “booboo.” Coming soon to the DSM-V.)
And naturally, vaccines had to come up. McCarthy said she had invoked what she calls her “mommy instinct” to finger the MMR in the case of her son.
Then Oprah read a response she had received from the CDC (at least she took a stab at social responsibility by contacting the agency) that talked about the lack of scientific support for the idea that thimerosal triggers autism.
McCarthy scoffed and said, speaking of her son: “He is my science.”
Well guess what, Prof. McCarthy? MMR doesn’t contain thimerosal. Never has.
She apparently didn’t know that. Oprah also either didn’t know it or didn’t bother to correct it. The studio audience and the vast TV audience were left with yet more misinformation and hysteria and hand-wringing about the horrors of autism, in a forum where so many people could have instead been enlightened about notions like autistic kids who aren’t “broken” and therapies that offer help without taking families for a ride. (A bus ride, if you like. Only one that REALLY crashes.)
Speaking of which: I would have liked to describe the whole show. But about halfway through, I realized my stop had arrived.
Left Brain Right Brain 
Joseph, you twisted my words. I said exactly what I meant and not a word more.
Kev, whether you believe them or not, ARI has tracked thousands of parents who report a good success rate with the GFCF diet. I have read literally dozens of articles on the GFCF diet (as I am sure you have).
Bullet, the DSM criteria is subjective. It is a laundry list subject to interpretation. The DSM definitions actually allow for children with significant speech delays to be classified as AS so I guess that some autistic individuals are classified as AS. AS is a spectrum, too. However, when the genetics underlying all ASD’s are finally resolved, I think you will have a clearer picture of what I mean. It’s like saying all cancer is the same so let’s treat it the same.
It’s funny. My child had significant sensory issues. S/he still has sensory issues. S/he displayed all of the classic signs (but we did not know it at the time) of autism. However, Kev does not believe s/he was ever on the spectrum because the diagnosis was removed in only 7 months from the initial diagnosis. S/he has continued to make progress since the last evaluation.
S/he does fit the classic story you hear from the DAN! crowd including leaky diarrhea for over a year and wanting to eat nothing but bagels and cream cheese. Don’t you think it is a little strange that this same story is repeated over-and-over again? Yep, there is no connection.
There is a fuzzy line between ASD and NT and even among ASD’s. I don’t believe that it is always pervasive. Even Grinker agrees with my opinion. Many of the kids being diagnosed today have milder symptoms. They will learn to adapt and make more progress than previous generations. Early intervention will improve their odds in my opinion. Diet will also help some.
The sad thing that I read from people on this site is the unwillingness to believe that some of these kids do get better with intervention. I know some will play the semantic game on me, but you all know what I mean. Most of the parents will NEVER let you know about their child’s diagnosis because we will protect our child from discrimination. That is what a responsible parent would do.
_”Kev, whether you believe them or not, ARI has tracked thousands of parents who report a good success rate with the GFCF diet. I have read literally dozens of articles on the GFCF diet (as I am sure you have).”_
BWHAHAHAHA!!! ARI?
Q1: Welcome believer in GF/CF – do you believe GF/CF is:
a) marvellous
b) fantastic
c) both
For a ‘professional statistician’ you sure do know how to swallow some woo.
What bookies do you work in by the way?
“S/he does fit the classic story you hear from the DAN! crowd including leaky diarrhea for over a year and wanting to eat nothing but bagels and cream cheese”
I have heard of plenty of under fives who were nowhere near the spectrum who had toddler diarrhoea and who were very picky with their food. My son has difficulties with certain textures and he sticks to a small number of food items but I’ve been told of typically developing children his age who would only stick to one or two food items. It is not unusual for a young child to be a picky eater. Neither is it unusual for a young child to have bouts of diarrhoea. A child on the spectrum may have these issues, but so will a child who isn’t.
Language, now that can be so difficult to explain, trying to let people who don’t know the difference between speaking and communicating in a way that most people would recognise as communicating and any differences involved in it. Not referring to you 666Sigma, because you’ve obviously looked things up (although just to split hairs the DSM IV criteria says with AS that whilst there can be a delay, there will be single words by 2 years and communicative phrases by three years). But I have a devil of a job explaining to people who ask about my son, or me, that being verbal does not mean being a good communicator. Did you know that one of the assessments for Aspergers allows for “superficially excellent expressive language?” Of course, differences and difficulties in communication can manifest themselves in different ways and to varying degrees. My son’s are more noticeable than mine, but even with me, who you can have a conversation with, I still display differences that go far beyond just a bit of social anxiety. I’ll give you one example. The other day my husband and I were talking about a film (actually not entierly sure of the subject matter now). He was in bed with the light off and I was on a chair facing away from him. Then, with no indication that I had changed subjects I said:
“That’s E sitting next to him.”
I’d been looking at a photo of Tom (my older son) at his nursery and was talking about a lass in his class. Because I knew what I was talking about I’d forgotten that my husband wouldn’t, of course he still thought I was talking about the film and got understandably rather confused. There are other issues, but this frequent habit I have of forgetting to put things into context is one small way that I can be verbal and yet have differences or difficulties in communicating.
Tom does a similar thing, although it can be even harder if you’re not thinking to realise what he’s talking about. For example his and his brother’s nappies are “five and four” because those are the sizes they have (although I have been told by my husband that that is down to him telling Tom to get “size 5 nappy”, since Tom can read numbers). Other objects are often just referred to by their colour and the other day, for example, he started shouting out “lift! wheelchair” because we’d been to the dentist three hours earlier and there’d been a lift with a picture of a wheelchair on it.
Kev,
You basically distrust ARI. Think about how you feel about them and then you will understand how some Mothers feel about the CDC and IOM. You don’t have to agree with it, but that’s what you are dealing with.
It just amazes that parents with autistic child can be this divided.
Now if you Google “autism GFCF,” how many hits do you come up with? Yahoo pulls up even more. I am not going to count, but I got 171,000 hits and a fair number will be about how GFCF diet helped their child.
Probably a week doesn’t go by where I don’t pull a story off of Google News! about the GFCF diet.
You can add one more child to that list.
I’m sorry if diet and supplementation has not helped Megan. But just because it hasn’t worked with her doesn’t mean it won’t work with another child. You believe that anything associated with ARI and DAN! is simply a pack of lies.
I take everything with a grain of salt. I don’t believe ND or EoH are balanced. I see closed minds (not skeptical minds).
Now if you Google “autism GFCF,” how many hits do you come up with? Yahoo pulls up even more. I am not going to count, but I got 171,000 hits and a fair number will be about how GFCF diet helped their child.
Google autism chelation and you get 469,000 hits; some (not enough) are sceptical, but a fair number are positive about this. There are a lot of stories about how this ‘helped’ peoples’ children. That does not mean that chelating autistic people is a good idea.
Similarly, there are 69,000 google results for secretin autism; lots of these are positive anecdotes.
This doesn’t show that chelation or secretin work as autism treatments or cures (the evidence is very much that they’re useless and potentially harmful). It does help give a sense of why anecdotal evidence is insufficient, though.
Joseph, you twisted my words. I said exactly what I meant and not a word more.
Oh yeah? Then explain who it is that you’re referring to when you say that people are speaking for ASD when they should only be speaking for AS. Who should not be able to say what? I’d like specifics.
You basically distrust ARI.
That could be partly true, but that’s not the issue at all. Can you accept that some of us scientifically-minded folks tend to be skeptical of anecdote-based medicine?
666sigma said “Now if you Google “autism GFCF,” how many hits do you come up with? Yahoo pulls up even more. I am not going to count, but I got 171,000 hits and a fair number will be about how GFCF diet helped their child.
Probably a week doesn’t go by where I don’t pull a story off of Google News! about the GFCF diet”
I thought you had a modicum of math and science education. You expect us to believe that pulling webpages off of Google is real research?
I can best that! Put the words “free energy” into Google and you almost 41 MILLION hits. And many of them are telling us about how physics is wrong and how we can get energy without any regard to the three laws of thermodynamics. Fortunately, many are skeptical (a glance shows a bit less than half). Please tell me that the number of webpages claiming that free energy and perpetual motion machines actually work does NOT make you believe them!
Sorry, you are going to have do better than Google searches.
I can tell you that just as many parents have posted on various disability lists that the GFCF diets did absolutely nothing for their kids. Anecdotal, yes… but they do exist. I just scrolled through groups.google.com and there may a couple there, but I thought I would just use this anecdote:
http://www.autism-watch.org/about/bio2.shtml
I apoligize for the obsenity. Please delete it.
Random Sigma,
I’m enraged that someone as stupid and full of lies as Jenny McCarthy is filling people’s heads with junk about autism, like they are soulless, unless they happen to be psychic crystal kids. No one can be the spokesperson for autism, just as no one can be the spokesperson for any other condition. One hopes that a spokesperson for “diabetes” for instance wouldn’t mislead people about diabetes as badly as Jenny is misleading people about autism.
Jenny’s stupidity reaches out of her air-head and damages my child’s chances in this world. You don’t get that. Fine. It’s still true.
Your kid isn’t autistic, now right? As soon as your kid stopped being autistic (assuming s/he ever was) you both lost a huge chunk of the right to speak about how autism is seen, right?
In fact, if little Jenny can ever get her story straight about whether or not her kid is still autistic, if he’s not then she’s got precious little right to talk about autism, compared to me because I have an adult child on the spectrum and I’m still on the spectrum (as always) like it or not.
Just like if I had a kid who was cured of cancer I wouldn’t have the same right to speak out about how cancer research is funded, etc, as someone who has a kid with cancer right now.
You couldn’t pay me enough, bribe me enough or threaten me enough to go on Oprah or “the view”. It’s not my thing, but come on. You want Jenny the woman who thinks that yeast made her son act crazy??? Jenny the woman who said her child was a psychic crystal and believed the “diagnosis” of a perfect stranger she passed on the street? Jenny the woman who smoked through her pregnancy? Who had affairs while she was married and blames her divorce on her kid’s autism?
If you want her to speak for you as someone with no current personal investment in autism now, fine. She doesn’t speak for me and my kid, our interest is current and personal.
Thank you, Thank you, Thank you HN! I’m looking for answers! I came to this site as I was starting to research and cut through the B.S.
I’m looking for info, because I have some concerns for my child.
I was just so shocked to see people talking so down about someone else with a child who is autistic, when I got here .
666sigma, be caredful using the “Google” word on here, they REALLY don’t like it.
I would like all of you to know, that just because I support Jenny, does not mean I’m not open to other things. I’ve been getting opinions from others too. I talked to my niece tonight who is a working pediatrics nurse, and got her opinion.
If it’s not vaccines, which I’m not real sure about, and even if they do cause it, I know that it’s not the only cause. Do you believe that all children are born with it? How come some are not diagnosed till after 2 years? Which I got that straight out of one of my niece’s books. You keep talking about enviromental causes on here, Like what? How come it can come on all of a sudden?
How come some are not diagnosed till after 2 years?
A diagnosis of autism is considered impossible before the age of 18 months. They are working on lowering the age of diagnosis. However, the lower the age, the less stable the diagnosis seems to be, and the least reliable any outcome prediction.
For example, Jenny’s child was diagnosed at age two. Just from that, the child apparently had a 12-19% chance of losing the label (based on a couple studies).
Ms. Clark,
I don’t pretend to speak for autistics. Like you, you will never see my on Oprah or the View. You won’t see my child’s videos on YouTube. I don’t pretend to have all of the answers. My views on autism are still changing. It may turn out that everything that I believe is garbage – you can take the cheap shot if it makes you feel good. However, my limited experience does match what many others, including Jenny McCarthy, have been saying.
In my opinion, ASD is not one disorder with various degrees of impairment. I think it is several disorders with various degrees of impairment and/or combinations. I will be honest, there is no doubt that my child was less severely affected than many kids on the spectrum. However, I do see some broader phenotype traits within my family and my wife’s family. Our child does fit the profile of kids on the spectrum. But s/he also fit the profile of the recovered kids that I read about – PDD-NOS diagnosis, no cognitive deficits and good imitation skills.
More importantly, I view your viewpoint to be dangerous. In my opinion, your viewpoint (if believed) could damage some children’s chances to lead an independent and productive life. You implicitly believe that all ASD’s are the same. It is simply a state of being and that society should change to accommodate the differences. I am not saying that society should not change. However, if we have the ability to improve a child’s chances to function in the “normal” world without accommodations, we should do so.
I believe that there are other children out there just like my child that can be helped with the right intervention. It appears to me that dairy causes significant issues with SOME children and they may benefit greatly from a simple change in diet. I believe that many ASD kids will benefit greatly from the step-by-step, one-on-one, positive reinforcement provided by ABA because most ASD kids have difficulty learning through inference. I also believe that many AS kids can be taught to minimize their non-verbal communication deficits no different than a poor golfer can improve their golf swing through practice. They will never be Tiger Woods, but lowering your score from 130 to 100 allows you to play with most people.
Your right to speak out on autism is no greater or less than any person who has been touched by it. You have a right to speak out on how it has affected your life, but that does not bestow upon you any greater right to criticize someone else’s experience that happens to differ from yours.
Jenny McCarthy’s son’s development will now be played out in the public eye. He will be scrutinized for the rest of his life. For his sake, I hope Jenny is right. I’m not sure that you share the same sentiments because it would damage your value system.
Joseph, my child was formally diagnosed at 3 years, 2.5 months.
What were their chances for losing the label?
Any additional information on this study would be appreciated.
Age 3 diagnoses seem more stable. But I don’t know what it means for a child to be autistic for only 7 months. I haven’t seen research on this phenomenon.
See this and this. The first one is about ASD as a whole. The second one is about autistic disorder and PDD-NOS.
More importantly, I view your viewpoint to be dangerous. In my opinion, your viewpoint (if believed) could damage some children’s chances to lead an independent and productive life. You implicitly believe that all ASD’s are the same. It is simply a state of being and that society should change to accommodate the differences. I am not saying that society should not change. However, if we have the ability to improve a child’s chances to function in the “normal” world without accommodations, we should do so.
If some children can be successfully treated medically (in a PKU-like fashion) that’s up to researchers to determine, not anecdotal meisters from the internet, with their grandiose proclamations to have discovered the cause and cure of autism. Despite what some might think, we don’t have a mysterious power to prevent people from finding “the truth.”
Our child started displaying signs around 18 months, but we did not know it. For the first 12 months, s/he was ahead of the curve. We started to worry after the 2nd birthday. Twice between the ages of 2 and 3, we asked our pediatrician about the speech delays. He told us not to worry.
So, it is a mischaracterization to say 7 months.
The DSM definition is a laundry list of behaviors. It’s subjective. S/he still has deficits, but not enough to trigger a DSM label.
One of the comments made by the neurologist was what he saw in those 7 months was the difference between going to college or not. You can decide what that means, but to a parent it means the world. According to my wife, he had tears welling up in his eyes when talking about the progress our child made. That speaks for itself.
Joseph,
A parent’s window of opportunity is limited. We don’t have 10 or 20 years to wait for the REAL science to come in. You don’t have any credible science that says bio-med or ABA doesn’t work. I am willing to try things that won’t harm my child.
GFCF will not harm my child. Dairy is a known allergen. It is one of the most common. CLO contains fatty acids that are known to improve brain functioning. Probiotics improve digestion. I believe that ABA fits the learning style of many ASD kids.
I won’t wait for science to prove what works and what doesn’t. For many parents, anecdotal data is enough because that is all we’ve got.
The regulars on this blog will claim my child or JM’s was never autistic or is high functioning or would have made the same progress without intervention. However, you have no proof of that. Not even anecdotal evidence.
One of the comments made by the neurologist was what he saw in those 7 months was the difference between going to college or not.
About 10% of Kanner’s original patients went to college. It appears that 21% of the general population went to college in 1961. Odds ratio 0.5. Doesn’t sound like something a doctor should be making blanket predictions about.
“We don’t have 10 or 20 years to wait for the REAL science to come in. You don’t have any credible science that says______or ____ doesn’t work. I am willing to try things that won’t harm my child.”
Congratulations. That is the precise argument we’ve heard for nearly every faith based medical intervention so far.
Is that dead horse showing any signs of life yet, Sig?
A parent’s window of opportunity is limited. We don’t have 10 or 20 years to wait for the REAL science to come in. You don’t have any credible science that says bio-med or ABA doesn’t work. I am willing to try things that won’t harm my child.
do you have credible evidence that biomed won’t harm your child? Can you show a study where megadoses of vitamins over years are safe? Same for chelators? How about HBOT?
Also, is it truly 10 or 20 years? How long did it take for the Secretin hoopla to take shape and be disproven? 3-5 years?
The problem is that crying wolf too many times will discourage researchers from using parental anecdotes as a basis for treatment research. Already M-B12 has had an unsuccessful double-blind trial. Same with GFCF. Where’s Jim Adams’ chelation study? (BTW, it’s completely unscientific to not publish results of a trail you’ve carried out. If everybody only published the results they liked, we’d end up with more random noise in the literature than would be desirable.)