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 
Erica, no, you’re not. It pisses me off every time. Using that logic that we so often hear, any woman who is even considering having a child in the next two years should seal themselves off in a plastic bubble right away, so as to limit contamination from anything that might give the child autism.
I guess I should probably blame the sushi that I ate before I knew I was pregnant on the fact that my kid has autism now. You know, fish is reportedly contaminated with mercury.
Try to do a double blind study on food so you can prove the efficacy of GFCF.
Elder JH, Shankar M, Shuster J, Theriaque D, Burns S, Sherrill L (2006). “The gluten-free, casein-free diet in autism: results of a preliminary double blind clinical trial”.
No significant differences in behavior.
I think it’s inevitable that if the GFCF diet is studied in many more double-blind trials, it will be found to be useless or at least not clearly useful. The same thing happened with Secretin. The same thing is apparently going to happen to MB-12. Chelation has had a small double-blind trial, and the author, who’d probably have a lot to lose if he publishes a negative result, has not published the results almost a year after he was supposed to.
It’s a never-ending story, Sigma, and it gets old after a while.
Thanks Kev and Gonzo!
i’m so frustrated being a mother. Alll i get is guilt guilt guilt. I even had a coworker ask me once if I had done a bunch of drugs when I was pregnant. It is always assumed even if not said that the mother did somethign bad when her kid has a disability. then more guilt. Must get kid in ABA full time. Where could we find an ABA team we could afford? we were a young couple just starting out in life and ABA therapist are like $20 or more an hour!!! I wasn’t even making $20 an hour part time, my salary couldn’t even cover their salary. How was I supposed to find 8 hours a day to do ABA all day? Isn’t that mean to the kid? Then biomed, forget it, so expensive and so much testing, we couldn’t afford that. Its all great for Jenny M who is rich and famous and can get whatever she wants by paying or using her celebrity status. I’m sure she got her son straight to the top of lists for the best therapy programs and doctors and schools. Then she cures him with a wheat and milk free diet???? We tried that damn diet and it didnt’ cure little R, not even close.
Erica, I am right there with the whole guilt issue.
Not only do I have to remind people that the HepB was not given 19 years ago, that the kid had seizures before any kind of puncture! He had to go back to the hospital he was born in to get his draw for PKU after he was released from the Children’s Hospital… oh, and also a draw to check phenobarbitol level.
I once had someone claim it was cow milk that caused his seizures. Um, he was being breastfed. Change of tune, it was the cow milk I drank!
AAARGH!!!
Then I was told multiple reasons for the kid not talking. One of them being that I did not talk to him. Oh, yeah… right. This was a kid who knew his colors, several animals and had a 70 word sign language vocabulary.
Just a couple of weeks ago I had someone who claimed to know about neurology ask me if we had tried cranialsacral therapy. I almost choked on my peach when I explained to her that a gentle head massage was not going to fix damage in Broca’s area which is inside the skull!
I’m still waiting for an answer from 666 of what caused my kid’s seizures. Was it the nasty cold I had or was it something else?
PS: Erica, my son received good speech therapy through a charity that is now called Rite Care (formally Scottish Rite Center for Childhood Language Disorders). My younger son received very low cost therapy from students at the local university’s speech and hearing clinic. The university also has an experimental preschool for developmental disabilities (20 years ago it focused on Down’s Syndrome, now its focus is autism… my son received several volunteer hours serving food at their auction… volunteer hours are a school district graduation requirement).
Get to know your local library. Not only do they have great books, but also videos and CDs (I am presently listening to Tim Curry reading Lemony Snicket’s “A Series of Unfortunate Event”).
Also, ignore idiots like 666 that claim to know everything.
Erica, I hear ya. If I hear one more person recommend that damn diet to me one more time, I’m gonna scream. I wonder if they’d like to help me pay for it. What am I supposed to feed the rest of my family? Are we all supposed to do this?
I’ve had someone tell me that because my guy likes milk so much, he surely must be allergic to it and we should get him off of it right away. Well gee – because I like chocolate so much, I should probably get off it too because I might be allergic. It’s ridiculous.
It’s amazing how money can “cure” everything. But for the rest of us, we’re left scrounging for what treatments we can afford and manage. That’s what pisses me off when I see these celebrities. How the hell could you possibly understand what I’m going through, when you can pay for all your medical bills and still have enough left over at the end of the month?
Hang in there, Erica. There is absolutely no proof out there that we, as mothers, caused our kid’s autism. And anyone who even suggests otherwise should get a smack upside the head.
“Remind me next time I get pregnant/give birth/get in a car accident/go to the doctors/have a major debilitating illness/whatever to ask about every single thing that I’m going to be given, so I can get online and find out what the Internet community has to say about it first.
Should be even more fun if I’m unconscious at the time.”
But, but, you MIGHT be a Crystal. Or an Indigo. Or a mauve-spotted-lump-of-coal. And then you could simply zoom in with your cosmic powers of clairvoyance to convey said messages :P.
Bullet: LOL! I can only hope that the doctor I get is a good link for my crystal. Wouldn’t want to get those telepathic messages lost in translation. Instead of giving me pain killers, I might get a Botox injection instead.
I know Kev will be too shy to ask this, but I’ve heard through the grapevine that he’s getting so many hits over the “Jenny McCarthy autism” search that he might have to shut down Left Brain/Right Brain. I’m sure he’s appreciate a small PayPal donation to
kevleitch@gmail.com
in order to buy a bit more bandwidth.
Right now it is very important that the Oprah version of Jenny McCarthy’s story is not the only one that gets read.
Gonzo, LOL! I lurved how Jenny M said she used her mommy intuition to cure her son. I guess those of us whose kids are still autistic just lacked that innate parenting intution that told us exactly the right thing to do. failure, guilt pbbbbbbbbbbth! I wonder how much of her intuition was paid for by a hefty checkbook
Despite my misgivings, I watched part of the Oprah show with Jenny McCarthy (I had to stop when the nausea became too severe).
I also watched a replay of the show where Tom Cruise expounded on psychiatry.
Same show, different words.
In both cases, you have photogenic people who know zip about what they’re talking about being taken seriously because….
Well, that’s where I run into trouble. Tom Cruise is taken seriously because he’s fairly good at pretending to be someone else and reading words that someone else wrote.
Jenny McCarthy is taken seriously because she was able to conceive and carry to term a child who later was diagnosed with autism. Is that it?
Her story – as scattered and bizarre as it was – is the sort of thing that one sees on Oprah (high drama, low content), but her conclusions about what caused her child’s autism and what (she thinks) is “curing” it are irrelevant.
I could match her story with hundreds of parents who have tried exactly the same mix of voodoo and woo with absolutely no effect.
So, when do I get my turn on Oprah? I could wear one of those “push-up” brassieres and a short skirt, if that would help.
Prometheus
Erica, you just reminded me of something I said once, a few years ago, back when NBC did their “Autism Week”, featuring wealthy families with smiling, “cured” children, all talking about how horrible their lives were until they put their kids in 40 hour per week programs. The only story that even mentioned how much it all cost was the one with two NYC lawyers for parents who enrolled their kid in an $80k per year school in NYC. Their money angle was how they fought city hall and got the state to pay for the school. Great, maybe I’ll try that. After I finish law school.
My thought at the time was this: no kid ever got cured on Uncle Sam’s dime. To me, the stories NBC ran that week were far from inspiring. In fact, they had the opposite effect on me. Like with Ms McCarthy’s story, a) she doesn’t have to worry about money and b) good for her that she now has fewer challenges with her kid, and moreover, good for her kid. I have an open enough mind that I have to accept that there is a slim possibility that the GFCF diet helped her kid, but I sincerely doubt it. It was just timing on the part of her kid. He hit his stride, so to speak, just as she was starting to experiment with the biomed stuff, and that sealed it for her. My boy (at 10 days from his sixth birthday) seems teetering on the brink of hitting his stride right now, several years after we tried the GFCF thing. Am I now to start pressing parents to try it, because maybe two or three years down the road it will do some good?
Fact is, we have to stop trying to “cure” these kids and do what we can to just plain help them. Give them support and services to allow them to get along on their own someday, when we’re dead and gone. That’s true for all kids.
Gonzo wrote:
“…, any woman who is even considering having a child in the next two years should seal themselves off in a plastic bubble right away, so as to limit contamination from anything that might give the child autism.
I guess I should probably blame the sushi that I ate before I knew I was pregnant on the fact that my kid has autism now. You know, fish is reportedly contaminated with mercury.”
I think you are wrong about the plastic bubble, plastics contain toxins… it would have to be an all organic rice paper bublle or maybe a sterilized glass buble, or maybe an HBOT balloon… no, those are vinyl, very toxic…
And besides the mercury in the sushi, don’t forget the parasites!!! Good thing we have homeopathy and angel therapy (10% off if you mention Jenny’s indigomoms.com website, now dismantled apparently so people won’t find out what Jenny used to promote.)
http://web.archive.org/web/20060514092610/www.indigomoms.com/index2.html
“The mission of Indigo Moms is to create a community where moms can meet to have fun, share stories, make new friends, join a support group, and hopefully learn and laugh on this adventure called life.
Your host is Jenny McCarthy. Jenny has a 4-year-old son, Evan, who is a Crystal child. Being blessed with Evan led Jenny to have the inspiring vision to create this meeting place.
Starting on June 1st, and the first of every month, you’ll be able to chat with Jenny in the Indigo Cafe, community forum. …
NEW ADDITIONS
A new article about energy healing through the generations by Elsie Kerns is posted. It contains 4 beneficial energy exercises from Donna Eden that you can do with your child! Try the Energy Meltdown, Figure 8s, Feathering, or Anchoring in the Earth. The Feathering exercise is great for calming your child before bedtime.
What type of Inner Fairy do you have? A fun Inner Fairy Guide Quiz by Cecily Channer is in the Articles section. Let your inner child come out to play, and find out which fairy you are!
We’ve started two exciting new Question & Answer columns, endorsed by Jenny, …
The new weekly column is Ask the Angels with Nicole Pigeault, Angel Therapy Practitioner. With an open heart, Nicole receives and communicates guidance from your angels to you!
The new monthly column is Indigo Insights with Michele Alexandria, Indigo Healing Facilitator. According to Michele, “I began to help people understand that true healing begins with the Spirit. As you heal the Spirit, so do you heal the mind and body.”
An opportunity to participate in a study of Indigos is listed in the Articles section or go directly to the study here.
…
Wondering about the various characteristics of Indigo and Crystal children? There is lots of new reading material in the Articles area.
…
More of your personal Indigo Mom stories about your children have been added for your reading pleasure.
…
Take a Tour of the Indigo Moms Web Site
We suggest you start with reading the heart-warming stories submitted by moms just like you. They’re all located at Your Stories.
…
Interesting articles are added every week to the Articles section. Learn more about the world of Indigos, charactertistics of Indigos, and parenting techniques
….
Visit the online store and buy an Indigo Moms t-shirt. Cute tank tops for moms, and t-shirts for the kids. ”
more here:
http://web.archive.org/web/20061019001343/indigomoms.com/generation1.html
Some of the pages have been removed from the internet archive since I linked to them last time.
I took some notes on my reaction to the Oprah program but it’s been said better here. Thanks.
One thing that keeps being stated is that Jenny should have a free rein because she is only talking about her experience for her own family. That’s not strictly true since as of June 2007 she has been the (celebrity) spokesperson for TACANow, so to say that there is not an agenda on behalf of that organization is disingenuous. At the point that one goes from private to public spokesperson, it is valid to question premises and validity of the, in this case, very, public statements.
What I took exception with, besides the cheering for the heroism of discovering google, is calling the MMR the “autism shot”, the clear statement that extrapolated beyond her own son about the need to detox and remove the yeast, “which most of them have” and the continued statements about finding the kid in there, soul removed, etc., and the general disrespect to pediatricians and mainstream science.
“Jenny interviewed Doreen Virtue about the Indigo Children.
Doreen is well known for her book, The Care and Feeding of Indigo Children, and other books about Angels and Divine wisdom. Read the exclusive interview!
Seasonal Beauty is JoJo McCarthy’s new quarterly column. JoJo is a celebrity makeup artist, Jenny’s sister, and she applies Jenny’s beautiful makeup for premier events. Now JoJo is offering her awesome makeup tips to Indigo Moms! Read her column for great ideas to enhance your radiance.
Two wonderful columnists have been added to Indigo Moms to answer your questions! Read both of their inspiring insights now!
Ask the Angels is a weekly column by Nicole Pigeault, Angel Therapy Practitioner. A new column for May 13th is posted.
Indigo Insights is a monthly column by Michele Alexandria, Indigo Healing Facilitator.
ARTICLES about parenting Indigo and Crystal children
Indigo Power – Living with Indigo Energy is a new article by Lisa Bellini. As a mother, are you one of the “Elders” that she talks about? Learn how to be a better parent to your Indigo/Crystal child.
Are you looking for more information about Indigos & Crystals? There are a couple of great articles about the World of Indigos by Michele Alexandria.
For those of you new to the terminology of Indigo and Crystal, there’s an article explaining the various characteristics by Daniela Ortner.
**How does Astrology correlate to the Indigo phenomenon?** Find out with these two interesting articles: The first is an interview with Stephanie Azaria from The Cosmic Path, and she explains how astrology foretells these special times, and what we can do as parents. The second article is by Mary English and explores the birth charts of Indigo children and their special characteristics.
…”
“The day I found out I was an adult Indigo will stay with me forever. I was walking hand in hand with my son down a Los Angeles street when this women approached me and said, “You’re an Indigo and your son is a Crystal.†I immediately replied, “Yes!†and the woman smiled at me and walked away. I stood there for a moment, because I had no idea what the heck an Indigo and Crystal was, but I seemed so sure of it when I had blurted out “Yes!”
http://www.autism-pdd.net/forum/forum_posts.asp?TID=20029&TPN=1
Joseph, show that double blind GFCF study. I could find some crap about peptide levels on the internet. This should be real interesting.
“Trust me. It’s wheat bread. Go ahead, eat it.”
“No, I swear that’s milk. Really! It tastes a little funny? Mmmm. Tastes fine to me. Go ahead, drink it.”
“Of course it’s cheese. But it was cheap. We got it from the government.”
There ain’t no way you can do a double blind study on food. Get real.
HN, it’s called an analogy.
There ain’t no way you can do a double blind study on food. Get real.
Go to Google Scholar and type “double-blind diet”.
Various methods have been suggested for a double-blind of GFCF, e.g. giving the children placebo vs. gluten/casein pills on the side.
But I like that argument. I’ve heard it about ABA too. ABA can never be proven ineffective, because there’s no way to do a double-blind study on ABA! At the very least they could do a randomized trial with blinded assessments. There’s no such thing, surprisingly.
Forgot the link to the abstract:
http://www.ingentaconnect.com/content/klu/jadd/2006/00000036/00000003/00000079
Is that related to the Rochester study
http://clinicaltrials.gov/ct/show/NCT00090428?order=1
Expected completion is in 2008. I seem to recall that everyone is on the GFCF diet, but a series of snacks are provided. Some are “challenge” snacks (containg gluten or casien) while some are GFCF free. Parents and researchers are not supposed to know which is which.
Matt
666sigma… you have only given us anecdotes.
From alpha to omega, you are just another one of those guys who puts the blame on the mother. Erica, Gnome, I and others belong to that not so small group of moms with disabled kids who are tired of being judged and blamed.
Personally, I don’t give an eta nor a theta to what you think. I’ve been in this game longer than almost anyone here (except AutismDiva, a mom to an autistic child older than mine, and the autistic adults… like AutismDiva!). I have actually seen the change of diagnosis, and I was on a listserv when autism was actually added to the DSM. I have probably logged almost a thousand hours in speech therapy waiting areas (for nine months I took two little boys to a total of 5 therapy sessions per week).
But I still want to know, what in your learned opinion caused my son’s seizures when he was 2 days old?
Was it the pitocin? Or the stadol (remember I did not have an epidural)? Or the really nasty cold I had?
You have all the answers, surely you can answer the question I have had for over 19 years!
Matt,
The Rochester study was to have the snacks containing gluten and casein or GFCF (crackers or something) in sealed unlabeled bags. All kids were put on the GFCF diet from home. The kids’ teachers at school were blind to the contents of the bags of snacks, they handed the kid his snacks at snack time. Presumably it would be easy to have a rice cracker or something and forumulate one with some added gluten and casein so that the two snacks were similar… I don’t know if they’d need to do that unless there was a cross-over so that each kid got each kind of snack.
Anyway, the GFCF brigade describe microscopic amounts of gluten and casein as being enough to send the kid back into the abyss of autism, so it’s not like the kid would need to eat a loaf of bread or a pound of cheese to test out the hype-othesis…
Patricia Rodier said that one reason they started the study is that kids on the diet weren’t getting enough nutrients, so they didn’t want all autistic kids just being put on such a restrictive diet for no reason.
Ms. Clark said: I think you are wrong about the plastic bubble, plastics contain toxins… it would have to be an all organic rice paper bublle or maybe a sterilized glass buble, or maybe an HBOT balloon… no, those are vinyl, very toxic…
Would stainless steel work? Or does that cause Alzheimer’s? Or was that aluminum? Damn, I’m confused…. 😉
How come my kid who got measles at age 18 mos didn’t become autistic? I thought measles went into the gut and made holes there and that allowed normal kids to get stoned on opiods from casein and gluten?
That was my normal kid. My ASD kid didn’t regress following the MMR because my ASD kid never regressed, but did have a weird head growth pattern, big burst of growth big head, the head stopped growing for a long time so that now the kid has a smallish head.
I think I had a big head and my kids’ dad had a big ol’ block head at about age 12 mos. It was like, whoa, Nelly. His siblings who are sort of weird and sort of LD also had big heads when they were kids.
I don’t think it was the vaccines.
Ms Clark,
you neglect the details that your child didn’t have to fight off mumps and rubella at the same time.
Of course, the MMR–>autism proponents neglect ths too. Why would breaking up the vaccine into three parts help? How do mumps and rubella weakened or dead viruses help measles infect the “gut”.
Matt
That’s a great question Matt.
But, it’s pretty clearly and scientifically known that the measles virus infects the respiratory system, the lymphatic system, and the central nervous system – not the digestive tract.
So even then, how does measles infect the gut, yet remain undetectable in the blood and CSF without researchers invoking false positive test results?
Hello friends –
From Elder:
“It is also interesting that even though grouped data were nonsignificant
for each of the dependent variables, behavioral and language improvement could be seen in individual children.”
It has been said again, again, and again. Dietary changes don’t have to affect every child with autism; but they might work for a particular child, and if it is working, you’ll know it. As a spectrum disorder, is it so unbelievable that some things will work for some people, but won’t work for others?
Also from Elder:
“Also, even though most parents were conscientious regarding the dietary restrictions, there were several reports of children ‘‘sneaking food’’ from
siblings or classmates.”
There were only 13 kids in the study, ‘several’ of which violated the rules. So, we start with a very small sample set and have percentage of the people break the rules.
Imagine a chelation study came out with thirteen participants, several of whom actually didn’t take the chelator, but the results were promising; the participants on this board would be in a feeding frenzy. Change it to a GF/CF study, and it is heralded as the only ‘real’ study on the matter. Go figure.
“Interestingly, some anecdotal reports varied from the non-significant findings. For example, parents of seven children reported that there were marked improvements in child language, decreased hyperactivity
and decreased tantrums. Further, parents of
nine children decided to keep the children on the GFCF diet even though there was no empirical support for continuing. Also interesting were the unsolicited reports of one teacher and one respite worker who claimed to observe language and behavioral
improvements in two of the children.”
If you ask people who go and stay on GF/CF (or other diets) they will tell you the same thing; people who do not know the diet is being manipulated notice a change. If this is a coincidence, it is one that strikes a great number of people who try dietary restrictions.
Take care!
– pd
Kudos to Schwartz!! I agree with everything being said. It is impossible to get information!
666 re: “It sounds to me that some people would be completely devastated if any bio-med approach worked. Like I said before, I get the feeling that some people would be devastated if GFCF or ABA worked. Heaven forbid that something might possible help a child.” I agree. Such venom! Why do you think this is so? I’m sorry, all I’m talking about is sharing the info to the world that MY child improved and that I’m not alone, and I get assaulted for promising the world I know everything and will cure all..
reform_noramal – why wouldn’t mainstream medicine want to capitalize on it?
My take is that the medical community is (understandably) very conservative, maybe to a fault. Not many will take a chance on a treatment unless it has been put through the rigor of double blind tests and peer-reviewed published articles. Also, the medical community is big on pharmacology and “specialists“ whereas DAN! Doctors, homeopaths, osteopaths, acupuncturists and the like treat the “whole personâ€. Mainstream medicine says it will take at least 10 years to cure autism. We simply don’t have that much time. Early intervention is critical.
Joseph, “Stating that an unproven treatment works is not a positive thing.” Unproven to whom? It has been proven to me that my child has gotten better before my very eyes because of gfcf and biomed and that is all I’m trying to share with people. And I am not alone
First of all HN, Gonzo, Erica, et al let me sincerely apologize for writing words that were interpreted that moms might be to blame. My wife felt that way too. Absolutely not! My wife did what we all do. That’s the problem. Of course she needed rhogam, but I’d prefer rhogam without thimerosal, thank you very much. Pitocin, epidural. I’m just saying they all play a role – nobody to blame, we all do it. We are messing with nature. Daddy’s health and genetics also play a role, as I said above, so no, men are not removed from involvement in the least.
We need to gather information and do what we can – to control what we can control. And one thing we should be able to control and all agree on is that thimerosal should be GONE 100% from all shots on the planet – it is quite simply neuro-toxic, less toxic than only one other substance: plutonium. Nobody disputes that. The dispute is whether the dose is harmful. Why risk it? And the vaccine schedule needs to be reworked, but the drug companies won’t hear of it. If they would just be more upfront with us, there’d be less hysteria and misinformation. To HN who conveniently left off half of my sentence, for “evidence†I will repeat: “my son TODAY has a morphed version of the VACCINE STRAIN of measles in his body wreaking havoc. that’s a medical fact.†(sorry I don’t know the exact test our DAN! Doctor used to confirm this. Something about extremely abnormal titers or antibodies). So, if you don’t vaccinate your child, he might get the measles conventionally. I did vaccinate my child, and he does have a type of measles and it is one of the major contributing factors affecting my young son’s immune system and health.
HNbot, I absolutely do not claim to have all of the answers. I don’t know what gave your child seizures. I can only tell you what worked for my child. And that is what Jenny is doing and what 666 is talking about. The bigger picture is: there are still many many parents who don’t even know our discussion is going on!! If biomed and gfcf measurably helps just 1% of children with autism, is it bad to attempt to give this info to 100% of parents of autistic children? Also, it appears essential to start this intervention when they are young. It very well may be too late for some.
My son’s horrible diarrhea all but disappeared within weeks of going GFCF. Proof: he accidentally got a hold of a piece of cheese and some stimming and diarrhea returned within a day. Same exact thing happened with 2 wheat-thins. Somebody please explain why this temporary regression happened. The science says the gluten and casein are not properly absorbed into the bloodstream and can cause an opiate affect on the brain. We monitor every crumb of food vigilantly. GFCF is very difficult. And you have to monitor more than just food – wheat is in play-doh, some shampoo, some soap, etc. We switched shampoos and he was kind of acting funky, off, and then we noticed it had wheat in it. I know, I know, that’s just an anecdote. To repeat, I can only share what has worked for my child. Additionally, there is absolutely no risk in TRYING GFCF, and if you are not extremely vigilant you will definitely not get the improvements that some are experiencing. For those who say he’d just have developed over time anyhow – Maya, please explain. How can a child with sever autism just develop and get better? He was GONE. Stimming, no eye contact, banging head on the floor, throwing fits, etc, etc etc and it is offensive for the author to mock that autism is at least as terrifying as pending death. If he grows to be as big as 6 foot 3 225 lb daddy, he would have needed to be institutionalized and possibly sedated. Instead his transformation has been remarkable.
Lastly, we love our child dearly and accept who he is. But I do not accept that he deserves to go through life sick, banging his head on the floor in agony, unable to sleep through the night. This we can agree on: we need to do whatever works! They are not going to get better without help!
Fox: It very well may be too late for some.
See that’s what I am talking about. hoplessness, guilt, failure, too late you lose. what do you say to someone whose kid is already entering the teen years? you know it is never just gfcf once you take out gluten and casein then its something else. soy free, corn free, potato free, specific carb diet, if that doesn’t work then sugar, preservative, msg, dyes, phenol, salicilate or oxalate free. See im not so stupid now. everyone has to do what they must i suppose but diet doesnt solve everything. you do what you must it cant hurt but i am just darn tired of being told it is too late and then being guilted because i didn’t recover my kid. if you dont think there is guilt read some of the stuff out there about how parents who don’t do this or that are stupid, lazy, careless, abusive. nobody takes into account that we coldn’t afford it when R was little and now it is too late. i hope things are done that recover kidsbut stop taking hope away from the older generation with fear mongering and timetables.
I think you can study the outcomes of GFCF and ABA. I just don’t believe you can do a double blind study. Gluten and casein pills sound interesting, but I wonder how many pills you would have to give them to equal a bowl of cottage cheese or ice cream?
You have enough ASD kids on and off both. You could do a year (or two) long study and compare the progress made by each group. You could baseline both groups so they are reasonably comparable in their age and development. They do these types of studies for fad diets all the time.
ABA is not some magic bullet. Fundamentally, it is education. Things that have come naturally to my younger son are being taught to my older son. Once shown, he is able to understand. I think the step-by-step method is conducive to his style of learning. He is way passed the “drilling stage” that was used a year ago.
I am absolutely confident that his progress is superior to most ASD kids. For my kid, we made the right choice. It is also my belief for other mildly affected PDD-NOS kids that this is the right path and the earlier the better.
My analogy on education is correct. Take two kids of equal intelligence. Send one to the best private school with the best teachers and highest standards and expectations. Send the other kid to a gang-invested drug-filled inner city public school. Which one has the better long term prospects?
I believe we have essentially sent our child to the former school.
Fox,
I’m wondering if you misunderstood that reference about “pending death.” My point was that it was offensive for a suggestion to be made that an autism diagnosis should somehow elicit the same reaction as a cancer diagnosis. Personally, i don’t think i’d take it too well if people acted as if my autistic child represented a looming death in the family. Conversely, such a comparison trivializes the suffering of families whose children really do get ill and die.
The “autism equals death” mode of thinking, of course, is evident principally among people who don’t have the condition. I would venture to guess that the actual autistic individual concerned would have a different opinion on the matter.
Fox said “To HN who conveniently left off half of my sentence, for “evidence†I will repeat: “my son TODAY has a morphed version of the VACCINE STRAIN of measles in his body wreaking havoc. that’s a medical fact.†(sorry I don’t know the exact test our DAN! Doctor used to confirm this. Something about extremely abnormal titers or antibodies).”
Try again. What evidence do you OR your DAN! doctor have that the measles virus in the vaccine caused problems?
I do not want the test results from some lab, I want the journal article your doctor used that made him/her decide to give the test and interpret the results. Give me the PubMed link. If it is a “medical FACT”, then it would have been written up in the Lancet, the New England Journal of Medicine or some other first rate medical journal.
It does not help that you are using the word of a DAN! doctor either. Not all DAN! doctors have qualified as actual medical doctors. Some are “naturopathic” type, or even chiropractors. The incompetent doctor that killed an autistic child by not even following the instructions from the manufacturer of the chelator he used on the kid was actually accepted as a DAN! doctor AFTER he killed the boy!
Here are some examples of the type of evidence I was asking for (I do not wish in invoke the Spam Filter gods, so I will not use the links, but if you know how to use PubMed you can find them… and you can also go to your local library and see if you can get a copy of the actual paper):
Lack of Association between Rh Status, Rh Immune Globulin in Pregnancy and Autism
Authors: Miles JH, Takahashi TN
Source: Am J Med Genet, May 16, 2007 [Epub ahead of print]
Mutations in the Gene Encoding the Synaptic Scaffolding Protein SHANK3 are associated with Autism Spectrum Disorders
Authors: Durand CM, Betancur C, Boeckers TM, et al
Source: Nat Genet, January 2007; 39(1):25-27
No Evidence of Persisting Measles Virus in Peripheral Blood Mononuclear Cells from Children with Autism Spectrum Disorder
Authors: D’Souza Y, Fombonne E, Ward BJ
Source: Pediatrics, October 2006, Vol. 118(4):1664-1675
Risk Factors for Autism: Perinatal Factors, Parental Psychiatric History, and Socioeconomic Status
Authors: Larsson HJ, Easton WW, Madsen KM, et al.
Source: American Journal of Epidemiology, May 15, 2005, Vol. 161(10):916-925
Age at First Measles-Mumps-Rubella Vaccination in Children with Autism and School-Matched Control Subjects: A Population-Based Study in Metropolitan Atlanta
Authors: DeStefano F, Bhasin TK, Thompson WW, Yeargin-Allsopp M, Boyle C
Source: Pediatrics, February 2004, Vol. 113(2):259-266
Now, do you understand what I mean by “evidence”?
As far as the diet goes, it may or may not be an issue. I know more than one person with real actual celiac. There are actual real medical tests for that (and they are not easy, but they do exist). But what you should do is read:
http://www.autism-watch.org/about/bio2.shtml
666sigma the continues with “My analogy on education is correct. Take two kids of equal intelligence. Send one to the best private school with the best teachers and highest standards and expectations. Send the other kid to a gang-invested drug-filled inner city public school. Which one has the better long term prospects?”
You are using a stupid stereotype. The “best” school with the “best” and “highest” standards around here would not even let a kid like yours or mine through their doors. They require an entrance exam.
Good grief. They do not hire specialists for kids like ours. One of them was so loony on the concept that in a website about different local schools one of them put under the category of “special ed” that all their students are special.
You are generalizing and being ridiculous. I am sure the following people have not “suffered” by graduating from a public high school: Bonnie Dunbar (the astronaut), Quincy Jones, Linda Buck, Sherman Alexie (though he left the “Rez” to attend a better public school), etc. (local people I know of, the list also includes a former governor and lots of others that you would not easily Google for).
I am sure that these guys did not “benefit” from a private education: Robert Chambers (Preppie Murder case), the Menendez brothers (they killed their parents), and several more when you put the search term “private school” into the Crimelibrary website. One crime that is not in their library is the young man who had been in a parochial private high school who killed a young lady sitting outside a public high school in a drive-by shooting. I would also like to add that I have helped at the local food bank where a mom of one of my daughter’s friends has come through, she graduated from the Bush School (an exclusive local private school, she also has a law degree but she never seems to be able to pull her act together!).
If you called that an analogy, it was a very stupid one. How a person does in a school is in no way solely dependent on whether or not it charges tuition. It also depends on who the people in the school (and sometimes private schools pay less, and do not have so many onerous requirements for employment… like continuing education and certification), and the students themselves.
It is also a silly thing to say “equal intelligence”. That is a nebulous term when describing the complex qualities of human beings.
For instance, where my daughter took violin lessons there was another little girl who was born within a week of her. They both started lessons at the same time. It became apparent that the other little girl was different from my daughter in a couple of important ways. My daughter was an early reader, not only books but also sheet music. She is very good at sight reading.
As it turns out, the other little girl struggled to learn to read, and she also struggled to learn to read music. But she loved playing the violin, so she practiced and practiced. Unfortunately, since she did not read the music correctly, she practiced the wrong way. But she was easily corrected by the music teacher at her lesson.
Sometimes my daughter and this little girl had a lesson together. My daughter would correct the girl’s reading of the sheet music… and the little girl would correct my daughter’s bow hand.
By the time they were in 6th grade, my daughter was still in the intermediate group as the other little girl was in the advanced group (with the high school students).
Which child is more intelligent? The one who could read better or the one who can play the violin better?
By the way, I am an Army brat. I graduated from the 9th school district I attended. While living overseas I went to a private school. The first year there was okay, but the second year was horrible. I had a 6th grade teacher who know less math than myself… I was so glad that the next year while my dad was stationed in Korea that I went to a public middle school in Bloomington, MN that had a self-paced math curriculum. I was able to catch up with the math I did not get in 6th grade, continue though 7th grade math and most of 8th grade math in one year. So when we moved AGAIN to the Panama Canal Zone (where the school were essentially Dept. of Defense schools) I was able to start 9th grade algebra in 8th grade (which in turn enabled me to graduate a year early, so I only had to attend two high schools instead of three).
Do you understand now why I think your analogy has serious logical flaws?
Because this extends to the use of AMA. Each ABA therapist has a different take on how things are done, and each child would be different. That is especially true with kids who are now getting an autism diagnosis. There is TOO much variability in the capabilities of those kids to make any kind of study meaningful.
My son did not have ABA, but did receive other therapies, so I’ll use the ones I am familiar with: A good OT/PT or speech therapist would work with each child in a way that would allow that child to learn better. There would never be “one size fits all”. Hence the reason for the IEP, Individual Education Plan.
Man. You offer up an opinion of Jenny McCarthy on your blog and it’s amazing what it stirs up.
As I’m finding out right now.
Thanks to many of you here who found your way to my site recently. You might be somewhat entertained to learn that the nastiness of (some of) the autism community that I spoke of has already reared its ugly head in the form of insults because “It’s sad that you won’t try EVERYTHING to help your child.”
Yes, exact quote. Because I won’t and don’t have the ability to do the GFCF diet.
wskrz, that ugly head is not new… nor is it limited to autism.
They appear on listservs, forums and whatever for things like dyspraxia, cerebral palsy, Down’s Syndrome, ADHD, deafness and a lots of other things that make kids different.
The guilt trips just keep coming. As do the sales pitches for the latest “cure”. Hey, look at the fellow who claimed that interventions during birth were a cause, even though if one of them was not done there would have been even more serious consequences!
Though, really truly… do read _No Time for Jello_ by Berneen Bratt. It covers the whole gamut of this discussion, even though the child “only” has cerebral palsy.
wskrz… I did leave a message on your blog (which is very nice, by the way). It was on the one about “silence”. Once upon a time I had to make the engine noises for my son for him to pretend to be a train or truck.
666sigma… your “analogy” on public versus private school is still stupid.
I wrote a long detailed explanation of why, but it is being held in moderation.
In short the reasons are:
1) kids who go to private school do not necessarily get the very best… possibly because the private schools do not have as strict a hiring code as public schools (nor do they pay as well… not schools, but a case in point — my younger son gets $13/hour working as a lifeguard in a public pool, BUT the private pool pays its college and high school age lifeguards $9/hour — which one will have the better lifeguards?)
2) kids are not homogeneous… it is useless to say “equal intelligence” because it does not say what KIND of intelligence… literary, mathematical, musical, spacial relation, emotional development, artistic, etc
3) not all therapists provide therapies the same… from ABA, to OT/PT to speech and language therapy — possibly because GOOD therapists tailor their sessions to the child (it is called an IEP for a real reason, it is an Individual Education Plan!)
4) with the broad brush that is now used to diagnose autism, there is a great variation in the weaknesses and capabilities of children diagnosed as autistic (especially since the percentage with mental retardation has gone down, down, and down)… how do you create a balanced study when you cannot even start off with a stable starting parameter?
HN, you still have difficulty with the concept of an analogy. Just look at your arguments. You missed the point completely.
With regard to your last point, I agree completely. In fact, it’s one of the points that I have been making about “recovery.” Not all kids are the same. As the saying goes, if you’ve seen one kid with autism, you’ve seen one kid with autism.
Take action. Find good therapists that relate well to your child. It’s not really therapy in the traditional sense any way. It’s education. Many of the kids on the spectrum can and will learn. They will learn to adjust and compensate. The earlier you start, they easier time they will have adjusting.
I don’t care what anyone here says or thnks. It’s been worth every penny.
Dude your analogy is hackneyed and trite.
Sigma: I don’t think anyone here would dispute that environmental influence such education is relevant. I’d be the first one to point out, for example, that placing an autistic child in an institution, even temporarily, is nearly the worst thing you can do to an autistic child.
There’s also some evidence, albeit limited, that pushing for mainstreaming is beneficial.
I would also recommend Gernsbacher et al. (2006) for ideas on effective and respectful approaches that are in fact backed by randomized trials.
Now, what you seem to be arguing is that ABA is “the best education.” That’s the part that’s disputed. ABA is behaviorism. I don’t believe behaviorism would be tolerated as a treatment for most disabilities. For example, would it make sense as a treatment for a mild paralysis on one side of the body to reward the person with food every time they use that side of their body that is paralyzed? Even if it’s effective, is it ethical to use behaviorism to get people to stop smoking? Assuming it works, would it be right to use behaviorism to turn homosexuals into heterosexuals?
666sigma, it is good that your child can now communicate more freely than they were able to before. If they still have strong interests you might want to channel them into helping them learn other things, eg if their interest was in Doctor Who you could encourage them to tell you stories, or do sums with number of Daleks or Cybermen etc.
I would like to ask you one thing and this is coming from someone who, at the ages of six to ten still presented enough signs of being on the spectrum to be noted as different, but who was in an environment that meant I was happy and secure. When he gets to moving out of grade school (I’m presuming you’re USA, but in the UK where I am I mean the transition from primary to secondary school) keep an eye on him. The transition from a small primary school to a school where there were constant changes and moving around and more pupils, more noise and more organisation needed to be done was very difficult for me. Furthermore, the peer relationships changed significantly from simple games to sitting around and talking, particularly about other people, a concept I could not grasp. I went from someone who was able to play tag or British Bulldog, to someone who found interaction with others very difficult. That was not due to changes in myself, more to do with changes in other people. Other people’s perceptions of what constituted good interaction changed and because I did not look at things in the same way I was left more and more out of things. Moreover, my communication skills were (and still are) affected to the extent that I couldn’t tell people what I needed or what I was feeling a lot of the time and in the more stressful environments it is worse.
There are a lot of other things that have an impact on me as well, for example I am probably hypersensitive to sound and touch and have motor planning and co-ordination difficulties. But I now have greater choice in the things I do and where I go which has helped me a lot.
There are good things about being on the spectrum. I’m able to focus on things quite intently meaning that I learn about them quite well. I view people as individuals and have a strong sense of justice. Hand on heart I don’t have much empathy, but I have loads of sympathy. I won’t claim to understand what others are experiencing, unless it’s very closely related to what I’ve been through, but if someone’s upset who doesn’t deserve to be upset, I’ll listen to them or read what they have to say, though I won’t always agree with them. I’m a quick reader which is very handy now I have two young lads to look after as well :D. I’ve been told I’ve got a good sense of humour which is quite quirky.
You don’t need to start fretting and thinking we’re saying it’s all doom and gloom. It’s not. But just keep an eye on your son as he gets older and whether you consider he’s on the spectrum or not, just be aware that if he is he may find some things get more difficult as he gets older and his environment and other people change.
Bullet, that’s some of the best advice I have heard in a long time. As I watch my son, seemingly much like Sigma666’s, move out of the range of behaviors that are associated with ‘classic’ autism, I can’t help but wonder what I can do to help him along in his development now that he is in that behavioral “gray area”. As expectations of ‘proper’ behavior increase in response to the lessening of his outward autistic behaviors, will his ability to meet those expectations increase accordingly? Your comment about transitioning out of grade school speaks directly to that question, and really helps frame the issue for me. Thanks.
Thank you SteveD :).
Bullet-
I can only say that you have helped me immensely on a bad day.
When is your book coming out?
Bullet, i loved what you had to say. This is what parents of autistic children need to read and hear. Hopefulness and help at the same time. Learning, growth and changes do not stop at the magical age of 5.
I never said ABA was the best education. My analogy is just that. An analogy. I was making a point that people who are given an aducational advantage will do better. I think there is a lot of confusion in the ND world as to what ABA really is. I think if you saw what my child was actually doing, most would approve.
ABA is breaking concepts down (that come more naturally to others) into simpler steps so he grasp them. Like many on the spectrum, he is a visual learner. Explain it to him 10 times and he might not get it. Show him once or twice and he’s fine.
Now, I will touch on a more dangerous topic. Where we live, we know 5 families with kids on the spectrum. 4 boys & 1 girl (imagine that). 2 AS, 2 PDD-NOS and 1 autistic – in terms of original diagnosis. The girl was originally diagnosed as autistic and showed signs from birth. The youngest (the girl) turned 3 within the last few months. The older boys turned 6 within the last year. Mine will turn 4 in a few weeks. Everyone has made progress with ABA. But the 3 who are mainstreamed with no discernible traits are all doing bio-med – GFCF and supplementation. One of the older boys goes to a private school that does not accept any kids with LD’s. None.
The one AS boy not on a bio-med program has made the least progress. However, the girl not on bio-med had her diagnosis changed to PDD-NOS this summer. But she has received, by far, the most support from the earliest age.
The 3 families whose kids are progressing fine will NEVER publicly come forward with stories of recovery. Why? Because we don’t want our children discriminated against.
Bullet, thanks for the insight. It’s one of the reasons we are working so hard to make sure he is mainstreamed at an early age. He’s a great mimic and seems to be able to follow social cues at this stage.
there is absolutely no risk in TRYING GFCF
Yes, there is. Removing large numbers of foods from a child’s diet – especially if they’re particular about what they eat – runs the risk of inadequate nutrition. It’s quite possible to eat a healthy GFCF diet, but that depends on a certain level of competence – something that’s sadly lacking among some of the ‘health professionals’ advocating biomed treatments for ASD.
There are also obvious disadvantages in following such a strict diet: a child might have to avoid foods they like, be supervised more closely, and the parents are likely to use a fair bit of time and money implementing the diet. There is also a real possibility that following a GFCF diet might lead to a misunderstanding of what is causing a child’s health problems: for example, lactose intolerance is pretty common; a GFCF diet will avoid the problems associated with lactose intolerance, but could lead to someone following an unnecessarily limited diet for a long time (as opposed to taking a simple test for lactose intolerance).
This doesn’t mean that a GFCF diet is necessarily a bad idea – but to ‘sell’ it as risk-free is misleading.