Autism Blog - The New McCarthy-ism « Left Brain/Right Brain

19 Sep 2007

Author: Qchan63
Comments: 172

Autism

The New McCarthy-ism

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.

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Comments

172 Responses to “The New McCarthy-ism”

Ms. Clark
September 19th, 2007
08:30:21

Thank you. I didn’t watch it but I’ve seen the bio-med mama’s gloating on the web over how everyone now will see how it was the vaccines,... you know the MMR with the thimerosal in it and everything.

Maybe Oprah can interview the parents of babies that may die because of being terrorized away from vaccinating because a vaccine ate Jenny McC’s baby’s brain… yet she was so brave and rexued him and everything. I’d like to hear what the boy’s father has to say about how he was cured… first with the angel therapy and the “crystal” necklace therapy to develop his true crystal child nature and all.
Maya M
September 19th, 2007
09:52:43

Why are people still taking Oprah seriously, after she has shown sympathy to the cause of terror?
E.g. http://www.camera.org/index.as.....ticle=1026
Estee
September 19th, 2007
12:43:23

We need to talk more about celebritization of “expertise.” Not only are they the new gods, but they are seen by so many people as infallible. I would respect celebs so much more if they stood alongside autistic people (in this case and as in how Sigourney Weaver did so with GRASP and oh so carefully—she does not speak for autistic people). I don’t think celebs should go on tv and pontificate about rememdies that are not proven and can be dangerous.

I was watching Michael J. Fox yesterday on Actor’s Studio. He calls himself “ill” but what got to me was the fact that he called Parkinson’s “a gift.” He said through Parkinson’s he became alive. It taught him how to appreciate life and live it to the fullest.

In Lucky Man (his book) he compares how when we all toss our “problems” into the ring and we have the option of choosing others’ problems, we end up taking our own problems back, because it’s what we know and what we’re used to. We realize the good lives we lead, no matter what the challenge, and we don’t want to trade it in. I think that is a wise way to think. It certainly is true around our household.

We don’t want to take away the reality of struggles other’s face and not acknowledge that they may be on a different point of the acceptance curve (acceptance begins with anger and fighting—it takes a while to learn to accept one’s illness or disability), but we definitely do want to talk about the wisdom of what we learn by being human. And part of being human is with disability and yes, illness.

So, I would respect celebs more if they put more thought into what they say and how they say it before they say it at all as in absolutes. Being a modern ‘god’ comes with it, an obligation and responsibility (but let’s face it—not all these glitterati are really all that intelligent). While we all may not agree with opinion (and everyone will have one), I think celebs have to begin listening to the complex discussion of disability, autism, the problems with “recoveries and cures.” If they are going to talk about autism, the most important thing they must do is to defer and acknowledge the discourse out there among autistic individuals right now.
Schwartz
September 19th, 2007
13:36:44

Why one earth would the CDC respond to a question about MMR with a statement about Thimerosal?

Speaking as a parent (not of an Autistic child mind you) I also applaud her willingness to investigate on her own, and I will attest to the extreme difficulty in sorting through the volumes of crap on the internet existing on all sides of the debate. Just trying to figure out an objective risk analysis of any vaccine (recommended or not) is pretty much impossible, and if you ask any questions, you get flamed straight to hell by accusations of being a conspiracy theorist, or worse, of peddling junk science.

It is here that the medical and scientific communities do themselves a disservice, because in certain instances, they are as guilty as the pseudoscientists of publishing biased, incorrect, arrogant, and misleading information which just undercuts credibility and fuels conspiracy theories.

To make matters worse, very few people or science reporters read the actual studies, and the general public isn’t even given access to studies, so we are restricted to hearing biased press releases by people who wouldn’t know how to critically review a highschool science project let alone complex statistical analysis.

I suppose we deserve what we are getting in this mess.
reform_normal
September 19th, 2007
13:44:59

You know…if there were even very well-botched scientific evidence that any of these miracle cures for autism were more than placebos or active placebos, why wouldn’t mainstream medicine want to capitalize on it?
Harold L Doherty
September 19th, 2007
13:48:42

Tsk, tsk. How DARE, Jenny McCarthy express her opinions and how DARE Oprah allow her a platform on which to do so! The AUDACITY of a parent who doesn’t recite the ND Manual expressing their opinons about their child’s autism condition. Tsk, tsk.
Joseph
September 19th, 2007
14:17:02

McCarthy spoke particularly of clicking on a link â€œup in the cornerâ€ (I believe those are what are known as â€œadvertisementsâ€) and learning about the wonders of biomed.

That’s hilarious. I wonder if that by any chance was the one that reads as follows:

Autism Recovery is Real———————————-
Learn from other parents.
Vaccinate safely.
http://www.generationrescue.org
666sigma
September 19th, 2007
14:19:13

Once again, the battle lines are drawn on causation while the bigger picture is missed. I don’t think her message was anti-vaccine. I think her message was one of hope.

She thinks diet has played a big role in her son’s improvement. This is a story that is repeatedly told by many, many parents. Is it a placebo effect? Who knows, but I doubt that a GFCF diet is going to harm your child. It sounds to me that some people would be completely devastated if any bio-med approach worked.

I think also she showed that ASD kids can improve and mitigate (or even eliminate) their deficits. I think she shows that love and acceptance are important to the child’s development, too. I don’t see this as an anti-ND message. Her boyfriend seems to be fairly neurodiverse himself.

It’s sad to see this twisted into something negative.
Joseph
September 19th, 2007
14:31:48

She thinks diet has played a big role in her sonâ€™s improvement.

Many parents think that Secretin, homeopathy, foot detox, neuro accupuncture, holding therapy, swiming with dolphins, removal of TV, Arizona horse shit, and so on and so forth, have played a big role in their children’s improvement. Your point is?
Kev
September 19th, 2007
14:36:39

“Tsk, tsk. How DARE, Jenny McCarthy express her opinions and how DARE Oprah allow her a platform on which to do so! The AUDACITY of a parent who doesnâ€™t recite the ND Manual expressing their opinons about their childâ€™s autism condition. Tsk, tsk.”

Task, tsk. How DARE an autism parent express their opinions and how DARE Kevin Leitch allow them a platform on which to do so! The AUDACITY of a parent who doesn’t recite the Harold Doherty Manual about their child’s autism condition. Tsk, tsk.

See how silly you look now?
Gonzo
September 19th, 2007
15:18:19

Considering how much of the general public listens to Oprah and considers her to be their primary source of information, you have to be asking yourself this: how many people watched that show yesterday and thought that autism is now cured by fad diets and not vaccinating?

One of the Google ads that I got when I searched on autism was trying to sell a hyperbaric chamber for almost $16,000. Pardon my cynicism then, when most of the Google “information” I find out there is usually accompanied by a dollar sign.

But I guess if you’re an actress, a model and a writer, you don’t have to worry about that money problem, do you?
passionlessDrone
September 19th, 2007
15:25:55

“Her boyfriend seems to be fairly neurodiverse himself.”

LOL! Very nice.
Brett
September 19th, 2007
15:27:08

I, too, had to stop about half-way through the interview. The story line was all too familiar, and I’m pretty sure I know where it ended up.

Here’s what made me stop watching: McCarthy said the GFCF diet cured her son, but that it was an MMR vaccine that caused the autism. I couldn’t see the connection, and in fact none was made. And then the quote concerning thimerosal (which should not have been an issue in 2004, when her son was given the MMR) and the general indignant reaction let me know what was to come.
Steve D
September 19th, 2007
15:31:30

Harold – I’m not sure why you are commenting on this thread. After all, Ms. McCarthy’s son is not as ‘severe’ as yours, and therefore she doesn’t truly qualify as an autism parent, right?
qchan63
September 19th, 2007
15:42:18

“Why one earth would the CDC respond to a question about MMR with a statement about Thimerosal?”

Just to clarify, I believe the CDC was asked about its position on the vaccine-autism hypothesis in general, not about MMR specifically. Since in the U.S. that hypothesis centers on thimerosal (i gather it’s a somewhat different story in the U.K.), that’s what the response focused on.

666sigma,
I don’t fault McCarthy for trying the diet or other biomed remedies she feels might be helping—we went GFCF ourselves for quite a while. But it seemed clear to me her anti-science, anti-evidence stance on causation, as reflected in her comments about vaccines, extends to her stance on treatments as well.

And she’s not only putting that mindset into practice, she’s advocating it to perhaps millions of people, which helps create an environment in which it’s that much easier for snake oil to proliferate—and that much harder for parents and others to sort what actually helps from what simply sells.
Suzanne
September 19th, 2007
16:50:58

The CDC comment was put onscreen in such close proximity to her MMR comment, that those who do NOT know that the MMR contains live virus, and therefore NO Thimerosal, might decide there’s a connection.
Qchan63 has addressed most of my irritation from this show. The Google ad McCarthy saw was Gen Rescue’s “autism is reversible”, which I still see regularly.
Strike 2 Oprah! Will you ever get it right?
Emmanuel
September 19th, 2007
16:54:43

A few months ago I read somewhere that Jenny McCarthy has an interesting theory about autism. Autistic kids are just “Crystal Children” who have telepathic abilities, which is why they have problems with language skills. She herself is an Indigo, which is one evolutionary step before the Crystal kids.

Sadly, I’m not making this crap up.
Ms. Clark
September 19th, 2007
18:21:07

The mercury moms will cry buckets over a kid who smears feces, then they pick as their spokesmodel a woman who would do the same on camera for a buck, and who has vomited and then eaten the vomit on camera (one hopes it was some kind of faux vomit, but some people will do anything for money).

What would the typical ASD kid learn about social behavior from hanging around with Jenny McCarthy? She has nothing that is too private to discuss, apparently next to no boundaries and no dignity at all. An NT kid might pick up the rules about what it is that makes Jenny popular and know how far they can go with burping and passing gas in public and remain popular. I suspect that ASD kids wouldn’t pick up on the subtleties and end up getting beat up for talking about eating vomit or wanting to have a picture taken while sitting on a toilet with their underpants down and girning.

But I think the deal is that the mercury parents were desperate for a spokesmodel, they got dumped by David Kirby and Bobby Kennedy Jr. Lyndelle Redwood and Lisa Ackerman just doesn’t quite cut it for Oprah, so they have the dumb bunny, blonde side-show exhibition to work with. May her 15 minutes of autism fame last for 5.
Harold L Doherty
September 19th, 2007
19:13:53

Yeah you sure showed me Kev. Thanks for this latest contribution to the world discussion on autism issues.
Ms. Clark
September 19th, 2007
20:04:01

At least Kev let’s you post your comments, Harold. You don’t let any of us comment on your blog, from what I’ve seen. You’re all about censorship, censorship, censorship, oh, yeah, and self pity, and promises of how your son is going to end up in an institution.
Summer
September 19th, 2007
20:53:24

If you held on a little longer, you would have seen a more positive side. Oprah second guest, Hollie something, talked about her experience with her autistic son, and she contended that it’s not the end of the world. She embraces the gifts of her son and said that there were many people on the spectrum who change the world.
Steve D
September 19th, 2007
21:07:21

I recommend that anyone who wants to know how Harold feels about autism to look at his site today. In his most recent post, he talks about how a friend asked “whether there was something {Harold’s son} is really good at.” Harold’s answer? “I am pleased that he has made progress with language and understanding life primarily by ABA intervention. But he does not have a special gift or talent.”
Wow. It seems that in Harold’s opinion if an autistic kid does not have a savant skill then he/she doesn’t have any special skills or talents at all.
HeatherS
September 19th, 2007
21:12:27

What bothered me the most about the show (and I’ll admit that we also only watched half of it – The other half is in TiVo waiting to be watched tonight) is when Jenny spoke of her son’s stereotypic behaviors after being given his diagnosis. How she had always attributed them as cute quirks of his personality, but after receiving his diagnosis, they became the enemy, locking her real son away from her.

Basically, she gave the impression that before his diagnosis, those quirks were a lovable part of her sonâ€™s personality, and after the diagnosis, they were the very walls of his prison cell.

My overall impression: I’ve seen worse. At least she didn’t talk about how he is a “Crystal/Indigo Child” (or DID she? maybe I just haven’t watched that part yet). After seeing the interview, I have no doubt of her tremendous love for her son, but a â€œbroken/locked-awayâ€ person is of no less worth than a â€œhealedâ€ person, and her interview didnâ€™t give me the impression that she felt that way.
666sigma
September 19th, 2007
21:14:30

Jenny McCarthy is no rocket scientist. Her views on causation are meaningless. I don’t think it is a big part of her message. In fact, she says she is pro-vaccine. She makes other comments about vaccines, but I don’t think they are important.

However, her views on her son’s progress are important. She says GFCF made an immediate impact on her son. She says early intervention has helped. She talks about how Jim Carrey has lovingly embraced her son. I don’t know about you, but he strikes me as a person that knows how to reach and relate to kids.

Those are all positive meaaages. I see no reason to dwell on the part of her message that you don’t like. 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.

Better get used to it, you will be hearing more stories like hers in the future.
999epsilon
September 19th, 2007
21:22:08

No one here is arguing against helping children.

Of course, we’ll be hearing more stories like Jenny’s (what with over-diagnosing so as to avoid lawsuits and receive services). I could tell one as well if I wanted to be over-dramatic and violate my kid’s privacy.
Ms. Clark
September 19th, 2007
21:30:48

http://www.youtube.com/watch?v=Ziv79f3B87Y
An antidote to, “I have to rip my kid out of autism though the tiny hole of time that I have.” as the dumb bunny says.

Oh, yeah, Holly embraces her son’s autism alright.

From her appearance on a LA news show, a paraphrase of a mom’s description of Holly:
“She then went on to state how they called her son on his “autistic behaviour” whenever he was doing something they found weird…. when this happens, Holly says to her son: “How are you acting?! ? !”; and then he replies (she used a classic, “hollywood movie”, mentally retarded voice when she imitated him): “Uh, I’m acting so aww-tees-tick!” Meaning, then of course, he should cease and desist immediately … for everyone else’s (read: his mom’s) comfort level.”

Oh, yeah, Holly can speak for my kid’s experience any time.... (that’s sarcasm).

These people are putrid, in my opinion, but typical of the media to choose people like them to be on TV. They sure don’t want anyone on there who might act “AW-TEES-TICK .” Not unless they all needed a good laugh at our expense.
Joseph
September 19th, 2007
21:35:09

Better get used to it, you will be hearing more stories like hers in the future.

Oh, and about that, the autism community has been subjected to stories like hers since the times of Bettleheim. The only thing that has changed is the woo, and the fact that we now have the internet, more awareness and so on.

Also, unless her son lost his diagnosis, what’s remarkable about her story?
Suzanne
September 19th, 2007
21:45:05

Summer… Yes, the “positive” side was there for a few minutes with HRP. But in the same breath as “respect these children” came “find that window, and get them OUT” . more or less anyway. If anyone cares what else I thought about this, see it on YouTube user= wiscsuzki
HN
September 19th, 2007
22:32:24

I’m sorry, I am a bit out of the loop.

Who is Jenny McCarthy? Who is Holly Peete? Why would I need to read her book or listen to either of them versus, say… my son’s neurologist (he had neo-natal seizures… which happened before he had any kind of vaccine), his speech therapists or his cardiologist?

Who is stupid enough to believe that the links on the right hand side of a Google page are not advertizements? I mean, it says (in gray type) “Sponsored Links” right above those links. Perhaps someone should send her a dictionary.

Though, seriously… I have no idea who Jenny McCarthy nor Holly Peete are. Actually, I’m surprised that Oprah is still on in the daytime.

By the way, a way long time ago when I first had to stay home with the baby (in between trips to the hospital, neurologists and other interesting places you get to go to when a baby has seizures as a newborn) I did watch some daytime TV. I think Geraldo Rivera had one of those shows (that baby starts community college next week!). I had to quit when I found myself be frightened by every little thing. Thank goodness daytime talk shows can be readily avoided… like the plague (at home sick days are now filled with DVDs).
jessamom
September 19th, 2007
23:09:24

So when do we see Lisa Ackerman doing a “Leave Jenny ALONE!!” Video? I’m sure she’d be great, or maybe they should leave it to Kim Stagliano.
Kev
September 19th, 2007
23:46:17

“Yeah you sure showed me Kev. Thanks for this latest contribution to the world discussion on autism issues.”

No worries HD - I could tell how unimportant you felt it was by your rush to comment on it ;o)
Colori
September 19th, 2007
23:50:23

Jenny McCarthy has said she was an outcast, felt separate from people and still acts extremely goofy, even going so far as to call herself a goofball.

Is Jenny an Aspie?
Joseph
September 20th, 2007
00:45:58

Is Jenny an Aspie?

Please No.
Ms. Clark
September 20th, 2007
01:34:02

Please, please, please, no.
Steve Fox
September 20th, 2007
01:58:43

My son has autism. Oprah’s show is not the forum for serious and effective discussion – it jumps around topics and gives incomplete information, but at least it has gotten us talking. I believe no one thing causes autism, and I don’t think Jenny believes that either. Also, no one thing “cures” it. I do believe the following things collectively weaken the immune system which plays a significant role in causing problems all along the spectrum: thimerasol in the flu shot that my wife got 2 of while pregnant, thimerasol in the rhogam shot she got, overuse of antibiotics without corresponding probiotics, including the antibiotics my wife received the day of giving birth, pitocin, the epidural, which is a serious anisthetic, a genetic predisposition for my son to autoimmune issues (uncle has diabeties, daddy has m s, mommy has hypothyroid), environmental pollutants, old mercury fillings in my wife’s teeth and a vaccine schedule that is too aggressive. (do we really need a hep b shot the very day we are born? even if we are premature or one of 3 underweight triplets??) I am not anti vaccine, but the current schedule as it is for 93 out of 94 boys isn’t a problem. but for the 94th, well that’s another issue. nobody knows their children like a mom. for my son, we believe the mmr was the straw that broke the camels back. no, there’s no thimerasol in that particular shot, but the appropriate immune response to the mmr just didn’t happen in his body. he now has a morphed version of the vaccine strain of measles in his body wreaking havoc. that’s a medical fact. he’s my science. he is one individual human being whose exact situation is unlike any other child with autism. we as parents need information so that we can make choices. educate yourself. read Steph Cave’s vaccine book. be informed. why is it so hard to find info about vaccines? as for the biomed treatments, it is true that it is a very unexact science because these kids have serious complex issues (and doctor’s “practice” medicine), but many of the biomed treatments have significant positive effects and are very common sensical. it is just the plain truth. learn about leaky gut and the gut-brain connection. learn about candida. learn about the mercury-testosterone connection vs estrogen. learn about how gluten and casein can leak into the blood and cause brain disfunction and bizarre behavior. it is all good fun to make fun of jenny and oprah, but hundreds if not thousands of parents have seen in some cases remarkable improvements in their children after going w/ biomed treatments. my wife and i have. yeah, the hyperbaric chamber is pretty far-fetched, but let’s be realistic here. EVERY parent of a young child with autism should at least TRY GFCF, which is very very hard to do, and meet with a DAN! doctor. it is your choice. my son has gotten much much better and it is because of DAN! it is a fact. god bless and good luck
Steve Fox
September 20th, 2007
02:10:18

oops forgot to mention he also absolutely received intense occ therapy, speech therapy, etc. and he no longer presents as having autism at 3 1/2 years old, whereas at 1 1/2 years, he was non communicative, stimmed constantly, paced constantly, played with toys inappropriately, no eye contact, horrific diarrhea, irritable, coulnd’t sleep thru the night. it has all been great fun. maybe this is “anecdotal” as people like to say, and if only small percentages of people are actually curing their children, ask any parent and they’ll want to be in that minority
All your jargon are belong to us
September 20th, 2007
03:22:11

Stevebot was here.
HN
September 20th, 2007
05:57:57

Stevebot said: ” I am not anti vaccine, but the current schedule as it is for 93 out of 94 boys isnâ€™t a problem. but for the 94th, well thatâ€™s another issue. nobody knows their children like a mom. for my son, we believe the mmr was the straw that broke the camels back. no, thereâ€™s no thimerasol in that particular shot, but the appropriate immune response to the mmr just didnâ€™t happen in his body.”

Evidence please? Something that shows that the MMR which has been used in the USA since 1971 has an over 1 in 100 chance of causing problems in boys.

OOOh… all those horrible things that happened to mommy! A flu shot! A rhogam shot! Antibiotics! Pitocin! An epidural!

Have you considered what would have happened if she had not had a Rhogam shot? Do you know what happens with Rh incompatibility? Is that something you would have rather taken the risk for?

For me… I only had some pitocin.

Though I did a nice big cold, I don’t think the flu shot would have spared me that. Two weeks of being in bed not being able to take many drugs. It was very hard to sleep when my nose was stuffed up, and I was constantly coughing up phlegm. I slept in the basement… when I did sleep. Fun. Fun. Fun. NOT.

NO antibiotics. None, zip, nada.

Also no epidural! First I was not dilated enough, and then I was TOO dilated. So I pushed for 90 minutes with no help other than a small dose of stadol.

But I did have pitocin. The reason was I was at 42 weeks. One of the things that is just as much of a concern as prematurity, is being late. And the kid was very late.

So, Stevebot… you seem to be the “expert”, what caused my kid’s seizures when he was 2 days old. This was 19 years ago, so there was no vaccine (not even the HepB).

Was it the pitocin? Was it the cold I had had? Or was it because he was post-mature? Or was it because he had his over 6’ tall father’s big fat Dutch head trying to squeeze through the pelvis of a 5’2” woman?

Why did I have a child who had seizures? Why did he not talk when he was three years old (though he did have a 70 word sign language vocabulary)? Why did he need 10 years of speech therapy? Do tell! Please, you seem to have all the (unreferenced and unverifiable) answers!
Ms. Clark
September 20th, 2007
06:13:25

http://en.wikipedia.org/wiki/Steve_Fox_(Tekken)
That Steve Fox?
Maya M
September 20th, 2007
06:24:04

“Hundreds if not thousands of parents have seen in some cases remarkable improvements in their children after going w/ biomed treatments. my wife and i have… My son has gotten much much better and it is because of DAN! it is a fact.”
My son has also gotten much much better, it is a fact. So have Kev’s daughter, Steve D’s son and hundreds if not thousands of other children not going through DAN! and biomed. It is called development.
Steve Fox, how do you know that you son wouldn’t improve without any biomed?
You see two events in succession, you applying biomed and your son improving. You jump to conclusion about a causal relationship between these events. Sounds to me like a very common logical mistake.
Science uses double-blind, placebo-controlled trials for reason.
Lucas McCarty
September 20th, 2007
10:45:26

Tis true, hundreds of thousands of parents are trying absolutely diddly squat and no matter where their child falls in the ranges of functioning, they develop.

I have no idea who Jenny McCarthy is. Horay!
Kev
September 20th, 2007
12:37:06

My blog entry regarding McCarthy’s, um, interesting beliefs is right here.
Gonzo
September 20th, 2007
13:07:56

Steve says: I do believe the following things collectively weaken the immune system which plays a significant role in causing problems all along the spectrum: thimerasol in the flu shot that my wife got 2 of while pregnant, thimerasol in the rhogam shot she got, overuse of antibiotics without corresponding probiotics, including the antibiotics my wife received the day of giving birth, pitocin, the epidural, which is a serious anisthetic

Thanks a lot, Steve. Way to make mothers out there feel like crap for “giving” their child autism because she didn’t want to experience all that pain during delivery, didn’t want to risk losing her child because of an illness or didn’t want to get horribly sick from the flu during the pregnancy.

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.
666sigma
September 20th, 2007
13:08:12

“Youâ€™re starting to sound like JB three years ago . . .”

You know better. I have clarified my reasoning previously. The expansion of the definition has resulted in those more mildly affected being diagnosed.

Early intervention means (hopefully) better education. Take two children of equal intelligence. Send one to the best private school with the best teachers and highest standards and expectations. Send the other one to a gang-invested drug-filled inner city public school. Which one has the better long term prospects? it ain’t rocket science.

If diet reduces sensory integration issues and results in improved focus then it only stands to reason that the child’s development will be faster.

Try to do a double blind study on food so you can prove the efficacy of GFCF. I’m cracking myself up over this one. On this one, I think you just have to trust your instincts.
bones
September 20th, 2007
13:20:21

You know I have to be honest, I’m getting a kick out of all this. The EoH-ers are just agog over McCarthy’s appearance on Oprah, as if she’s the solution to all that ails them.

Their scientists have been completely discredited, both inside and outside of the courtroom.

Geier has been laughed out of the courts so often, that he’s been reduced to a non-testifying consultant at a drastically reduced fee. Yet he continues to spew forth “scientific” articles at a rate so fast that it would make Stephen King envious. Coincidentally, each new article belched addresses the crticisms of the last article belched. And always with scientific certainty, he concludes thimerosal causes autism. Amazing!

Bradstreet is the quintessential quack. So clueless is this man, he makes George W. seem like Einstein. His testimony and writings were thrown out of court so fast and far, he still hasn’t found his way back (nor has he been sent directions).

The Haley, Deth, Burbacher, Holmes, yada-yada-yada, have all been dismissed by the medical/reserach establisment as well as the ALL courts. And the EoH-ers can’t decide if it’s thimerosal, mercury, aluminum, environmental toxins (generally), China, MMR, etc…

Yet, OH MY GOD!! Forget all of our pseudo-science, here comes Jenny McCarthy. People may not have believed all of our “experts” (for the past 7 years), but they’ll believe a flash in the pan actress/nudist.

Please…
Erica
September 20th, 2007
13:33:14

Am I the only mom here who is just so tired of these long lists of things the woman probably did during pre-conception, pregnancy and birth to make her child autistic? You never hear anyone criticizing the man’s pre conception activities. Maybe the swimmers were polluted pre-ejaculation with vaccines, antibiotics, amalgam fillings, beer, cigarette smoke, car pollution, mc donalds gluten filled french fries.

If men gave birth too, there would not be one peep of criticism for epidurals. They would probably blame it on makeup, high heels and hairspray.
Kev
September 20th, 2007
13:41:42

Well, I’m a Dad Erica but I know exactly what you mean. The leader of the org McCarthy found via Google recently wrote a ‘detoxification’ protocol for his wife for before, during and after her latest pregnancy. He apparently didn’t have to do a darn thing.

Siggy – c’mon – sense of humour feller ;)
666sigma
September 20th, 2007
13:57:54

Believe me. I’m getting a kick out of all this. The two sides are very entertaining.

On the other hand, it is really sad that the real message has been lost in all of the vax & biomed debate. Overall, I think McCarthy’s message is one that both sides can embrace.

One thing is for certain. You’ve picked some (relatively speaking) hot topics of late.
AngryMom
September 20th, 2007
14:51:17

My child babbled for the first time within an hour of his 6 month shots. Surely this isn’t coincidence…
HN
September 20th, 2007
15:11:27

666sigma said: “Send one to the best private school with the best teachers and highest standards and expectations. Send the other one to a gang-invested drug-filled inner city public school.”

Now, I must take exception to this. In my city the private preschools do diddly-squat for disabled kids!

Through the requirements set in IDEA (Individuals with Disabilities Education Act) a preschool for kids with speech and language disorders was available. There was a team consisting of a teacher, aide, speech therapists and OT/PT (occupational and physical therapists). The latter even had a special room with swings and specialized trikes.

The super-duper uber private preschools around here require an “entrance exam”. Kid does not speak at age 3… “sorry, we cannot have this child near the others!”. (which is what happened to a mom whose older son was on my kid’s soccer team, apparently she really like the private school for her older kids until they decided her speech delayed youngest was not allowed in—- from then on she never said a positive thing about the private school)

When my son was in third grade (and completely mainstreamed with speech therapy and his reading/writing taking place in a small group) he got a new friend. This child was in a private school that FAILED to teach him to read. It seems they had no idea on how to deal with dyslexia, and they were unwilling to spend the money to find out or to get any more resources.

Gang infested? Where do you live? Fortunately our urban public high school is on top of such issues (I know, I spent two hours at its PTSA meeting last night, along with some time with the Special Education PTSA meeting being held upstairs at the same time). This is a school where an alumna who recently received a Nobel for medicine will be speaking, and its jazz band won last spring’s Essentially Ellington contest in New York City (look up the movie “Heart of the Game”).

And 666sigma continues “Which one has the better long term prospects? it ainâ€™t rocket science.”

Isn’t it convenient for you that I used to be a rocket scientist (aerospace engineer) to address your gross errors in stereotyping?
Gonzo
September 20th, 2007
15:27:45

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.
Joseph
September 20th, 2007
15:33:05

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.
Erica
September 20th, 2007
15:57:36

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.
HN
September 20th, 2007
16:55:00

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.
Gonzo
September 20th, 2007
17:17:15

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.
bullet
September 20th, 2007
17:36:29

“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 Iâ€™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 Iâ€™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.
Gonzo
September 20th, 2007
17:49:33

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.
Jennifer
September 20th, 2007
19:11:16

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.
Erica
September 20th, 2007
20:24:29

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
Prometheus
September 20th, 2007
20:36:53

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
HeatherS
September 20th, 2007
20:45:06

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.
Ms. Clark
September 20th, 2007
20:45:10

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/200.....ndex2.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/200.....tion1.html

Some of the pages have been removed from the internet archive since I linked to them last time.
Regan
September 20th, 2007
20:47:34

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.
Ms. Clark
September 20th, 2007
20:55:06

“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, â€œYouâ€™re an Indigo and your son is a Crystal.â€ I immediately replied, â€œYes!â€ 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 â€œYes!”
http://www.autism-pdd.net/foru.....#038;TPN=1
666sigma
September 20th, 2007
21:45:27

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.
666sigma
September 20th, 2007
21:50:27

HN, it’s called an analogy.
Joseph
September 20th, 2007
22:17:27

There ainâ€™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.
Joseph
September 20th, 2007
22:23:26

Forgot the link to the abstract:

http://www.ingentaconnect.com/.....3/00000079
Matt
September 21st, 2007
03:02:24

Is that related to the Rochester study

http://clinicaltrials.gov/ct/s.....28?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
HN
September 21st, 2007
03:13:27

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!
Ms. Clark
September 21st, 2007
04:43:49

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.
Gonzo
September 21st, 2007
04:51:41

Ms. Clark said: I think you are wrong about the plastic bubble, plastics contain toxinsâ€¦ it would have to be an all organic rice paper bublle or maybe a sterilized glass buble, or maybe an HBOT balloonâ€¦ no, those are vinyl, very toxicâ€¦

Would stainless steel work? Or does that cause Alzheimer’s? Or was that aluminum? Damn, I’m confused…. ;-)
Ms. Clark
September 21st, 2007
04:52:46

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. :-/
The Wizard Of Oprah : Left Brain/Right Brain
September 21st, 2007
04:56:53

[...] The New McCarthy-ism » (91) Ms. Clark, Gonzo, Ms. Clark, HN, Matt, Joseph [...] [...]
Matt
September 21st, 2007
05:08:48

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
Toad
September 21st, 2007
06:16:14

How do mumps and rubella weakened or dead viruses help measles infect the â€œgutâ€.

That’s a great question Matt.

But, itâ€™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?
passionlessDrone
September 21st, 2007
18:06:37

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 â€˜â€˜sneaking foodâ€™â€™ 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
fox
September 21st, 2007
22:30:50

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? Iâ€™m sorry, all Iâ€™m talking about is sharing the info to the world that MY child improved and that Iâ€™m not alone, and I get assaulted for promising the world I know everything and will cure all..

reform_noramal – why wouldnâ€™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 â€œspecialistsâ€œ whereas DAN! Doctors, homeopaths, osteopaths, acupuncturists and the like treat the â€œwhole personâ€. Mainstream medicine says it will take at least 10 years to cure autism. We simply donâ€™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 Iâ€™m trying to share with people. And I am not alone
fox
September 21st, 2007
22:35:04

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. Thatâ€™s the problem. Of course she needed rhogam, but Iâ€™d prefer rhogam without thimerosal, thank you very much. Pitocin, epidural. Iâ€™m just saying they all play a role â€“ nobody to blame, we all do it. We are messing with nature. Daddyâ€™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 â€“ 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 â€“ 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 wonâ€™t hear of it. If they would just be more upfront with us, thereâ€™d be less hysteria and misinformation. To HN who conveniently left off half of my sentence, for â€œevidenceâ€ I will repeat: â€œmy son TODAY has a morphed version of the VACCINE STRAIN of measles in his body wreaking havoc. thatâ€™s a medical fact.â€ (sorry I donâ€™t know the exact test our DAN! Doctor used to confirm this. Something about extremely abnormal titers or antibodies). So, if you donâ€™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 sonâ€™s immune system and health.

HNbot, I absolutely do not claim to have all of the answers. I donâ€™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 donâ€™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 sonâ€™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, thatâ€™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 heâ€™d just have developed over time anyhow â€“ 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!
Erica
September 21st, 2007
22:59:55

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.
666sigma
September 21st, 2007
23:28:09

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.
qchan63
September 21st, 2007
23:47:34

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.
HN
September 22nd, 2007
01:08:28

Fox said “To HN who conveniently left off half of my sentence, for â€œevidenceâ€ I will repeat: â€œmy son TODAY has a morphed version of the VACCINE STRAIN of measles in his body wreaking havoc. thatâ€™s a medical fact.â€ (sorry I donâ€™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
HN
September 22nd, 2007
01:33:59

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.
wskrz
September 22nd, 2007
02:48:28

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 “Itâ€™s sad that you wonâ€™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.
Malingering’s World » the gluten free/ casein free story
September 22nd, 2007
04:23:50

[...] showed up when I clicked “I’m feeling lucky” though apparently that’s what Jenny McCarthy does and it’s good enough to help her write a book, but since I am not a Playboy skank I probably [...]
HN
September 22nd, 2007
06:36:07

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.
HN
September 22nd, 2007
06:48:26

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.
HN
September 22nd, 2007
07:41:00

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?
666sigma
September 22nd, 2007
08:00:47

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.
snoop dawg
September 22nd, 2007
08:20:02

Dude your analogy is hackneyed and trite.
Joseph
September 22nd, 2007
14:36:36

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?
Bullet
September 22nd, 2007
14:37:11

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.
Steve D
September 22nd, 2007
16:55:27

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.
Bullet
September 22nd, 2007
17:11:39

Thank you SteveD :).
AngryMom
September 22nd, 2007
18:48:40

Bullet-
I can only say that you have helped me immensely on a bad day.

When is your book coming out?
Erica
September 22nd, 2007
19:46:54

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.
666sigma
September 22nd, 2007
23:10:06

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.
Jon
September 27th, 2007
00:59:00

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.
Wow! Thanks, Jenny! « MommyHood - The Adventures of Kim and Alex
September 28th, 2007
02:52:31

[...] The first Left Brain/Right Brain post [...]
Colleen
October 9th, 2007
01:23:26

I am appalled at the way people are twisting what Jenny says around. My friend has a child with Autism. I have heard her state many of the things that Jenny believes not to mention that there are many many others that believe the same. It is not just the mercury that is in shots but many of the ingredients. You would be APPALLED at what is in shots. She does not think that it is only shots though but that these children have comprimised Immune systems. The shots then reek havoc on the body because of the this. She IS for a new schedule as for how these children receive these shots as well as a test for newborns to see if the they have a compromised immune system. But when it comes to vaccines money talks doesn’t it. It is the food we are putting into our mouths, it is the crap in the ground being leaked into our water, it is a genetic code that won’t let our bodies process all this crap. She was retelling her story and is not putting it on anyone else. She wants people to listen and do everything they can for their children. MOstly, She wants the goverment to listen to mothers with children of Autism no matter what is your child’s condition!! Did any of you even read her book? I did and it was touching, heart wrenching and honest. This is not about who is right or wrong it is about getting to the bottom of what is wrong with our children. Can you imagine how scary it will be when OUR children have children if it keeps up at this rate? Most of you need to open your ears to listen and just be honest with yourselves instead of badmouthing a mother who is just trying to save her child You ALL need to work together people and all this back and forth crap is not going to cut it
original cali biomed xprt
October 9th, 2007
02:07:03

“it is a genetic code that won’t let our bodies process all this crap”

If that’s true then the human species is completely doomed.

Carpe Diem, baby!
HN
October 9th, 2007
02:40:46

Colleen said: ” You would be APPALLED at what is in shots. ”

Actually, we know what are in the shots. Some very nasty germs that have been treated so as to only create an immune response rather than the actual disease.

Would you rather we go back to the “good ol’ days” when measles regularly killed 500 people a year in the USA, and several thousands of babies died from pertussis… OR when measles, mumps, rubella, Hib and polio caused kids to become severely disabled.

About that, try reading some other good books: Deaf Like Me by a pair of Spradley brothers (it deals with the daughter of one who was deafened as a fetus during the rubella epidemic in the early 1960s)...
... or Train Go Sorry by Leah Hagen Cohen

And Colleen continues “MOstly, She wants the goverment to listen to mothers with children of Autism no matter what is your child’s condition!!”

What about the rest of us with disabled kids who are not autistic? Those kids that have been disabled by the actual diseases, or have not been able to get the vaccines or have other disabilities like hypertrophic cardiomyopathy. Why should autism be the only one that gets the glory?

Do you want to ignore these two young men in the UK:
http://www.timesonline.co.uk/t.....055533.ece

And then Colleen continues (without any paragraph breaks) “Did any of you even read her book?”

Sorry to burst your bubble, but there are much better books around. I would suggest you try Not Even Wrong by Paul Collins, Unstrange Minds by Roy Richard Grinker and Making Peace with Autism by Susan Senator.

Other highly recommended reads would be:
No Time for Jello by Berneen Bratt
Vaccine by Arthur Allen
Vaccinated by Paul Offit
Anthropologist on Mars by Oliver Sacks (plus his other books like Awakenings, The Man Who Mistook His Wife for a Hat, etc).

Then she continues “Most of you need to open your ears to listen and just be honest with yourselves instead of badmouthing a mother who is just trying to save her child You ALL need to work together people and all this back and forth crap is not going to cut it”

I’ve been dealing with type of stuff for over 19 years. First having a kid with seizures, then having him NOT get vaccinated for pertussis when the county had a pertussis epidemic, then having all sorts of “kind” people telling me a bunch of stuff I should be doing (No, a gentle head massage is not going to repair damage in Broca’s or Wernicke’s areas of the brain), having a kid in special ed. who was mainstreamed… yet only got birthday invitations from his SpEd friends but NEVER from the regular ed. kids and then having people like you trying to tell me you know more than me.

Come back after you finish reading the books I listed… Plus these fictional ones:

The Curious Incident of the Dog at Night Time by Mark Haddon
The Silent Boy by Lois Lowry
Gonzo
October 9th, 2007
03:38:48

A friend of mine had a great comment about this – Let’s give up on vaccines and go back to giving birth to 15 kids in the hope that 2 survive childhood.
original cali biomed xprt
October 9th, 2007
06:44:17

Hi, Gonzo:

Of course, the standard reply from the altie-biomeddler playbook (to the comment of your friend’s) will be all about “improved sanitation”.

“In the world according to Garp, we are all terminal cases.”
HN
October 9th, 2007
15:01:12

Oh, the “it is improved” sanitation really doesn’t fly when polio started to become a real problem AFTER sanitation was improved (it delayed the infection until after kids were out of babyhood, it seems to affect older kids more than babies—- though some babies did die regularly of polio).

Also Japan had to close several college campuses last spring due to a measles outbreak. They do not seem to have any problems with sanitation.

The thing is that if you read any history the scenerio mentioned by Gonzo was all too common. The movie “Amadeus” showed that Wolfgang and Constance Mozart had one son, actually they had had SEVERAL children but only two survived childhood. Mary and Percy Bisshe Shelley had only one of several children survive childhood (she wrote Frankenstein, he was a poet). Even the Gilbreth family of Cheaper by the Dozen lost a child to diphtheria (the family pictures show only eleven children).

I was sent an old family bible by a cousin a ocuple of years ago. This was when I found out that my mother had two uncles I had never heard of… one died when he was 7 years old, the other when he was 10 months old. My own mother was the only surviving child born after her parents had been married for almost 20 years.

Colleen, do you really want us to go back to the days when families shared the common experience of burying children? Measles is still a concern in both Japan and the UK, and it has returned to Michigan. Shall we live through this:
http://www.haaretz.com/hasen/spages/910761.html
Colleen
October 9th, 2007
19:36:58

First of all, I am all for vaccines. All 3 of my children were vaccinated. Never said I was against them. And if you actually read Jenny McCarthy’s book which is what was the original topic of discussion(I have actually read some of the books suggested thank you but that was not the topic. Give me the discussion site for those books and I will gladly comment.)she does not think that we should ban vaccines either. But there should be something done in regards to vaccine schedules and cleaning up the ingredients to the vaccines. Also there should be a test when children are born to test children’s immune systems to see if a child can handle vaccines, tap water, etc. Even if this is NOT what causes Autism I think this should be done anyway. I do not think we should go back to the “good ol days”. But so now instead of all these kids dying of some disease like measles, they are living with Autism?? That is suppose to be better???

Also HN funding for Autism is ridiculously low compared to other diseases and disabilities. Jenny actually gives some stats about that in here book.There are few resources for Autistic kids in most areas. But if you read the book you would know that there are 1 in 150 kids and 1 in 94 boys diagnosed. I don’t think Autism or any other disease or disability should have “glory”. I think we need to look at the FACTS and be glad that someone is speaking out for a disease that needs some attention.

Lastly HN it is pretty sad to say that you have been “dealing” with your child. Thank you for YOUR life story. I can only begin to imagine what your child has had to “deal” with. God Bless him.
Kassiane
October 9th, 2007
20:16:43

You did NOT just say that dying was better than being autistic.

You did NOT.

Oh wait. I can read.

You did.

What the HELL is wrong with you???!
Matt
October 9th, 2007
20:25:39

But so now instead of all these kids dying of some disease like measles, they are living with Autism?? That is suppose to be better???

1) these two are not related. NOT. Autism and measles have no connection aside from the fact that autistic people (like everyone else) can catch the measles.

2) Dead vs. autistic. That’s what we call in my home a “no-brainer”. Alive is better.
original cali biomed xprt
October 9th, 2007
21:09:19

From my reading of what HN wrote, it appeared to be clear it was about dealing with the woo; pseudoscience; unsolicited [ersatz] advice.
Bink
October 9th, 2007
21:41:58

Oh, my God. Colleen, please either retract that statement or go fuck yourself.

Doubt this will make it through the filter but want to type it anyway
HN
October 9th, 2007
21:48:28

original cali biomed, you are correct.

But, not only is it pseudoscience it was the “Oh, my second cousin’s stepsisters uncle’s friend had a grand-nephew who couldn’t talk until they were 4, 5, 7, 30 and they are just fine now! So just wait and see!”. Or the “He can’t talk because you don’t talk to him!”—- Or he had seizures because he drank milk (he was a newborn), or I drank milk OR my absolute favorite was because someone who was on “stimulants or depressants” was thinking about him. Or being told to read stupid books by Thomas Sowell, Glenn Doman and the celebrity with a disease of the week.

Colleen said “But so now instead of all these kids dying of some disease like measles, they are living with Autism?? That is suppose to be better???”

Are you really that idiotic? You do know that rubella is a cause of a certain type of autism, and several other disabilities. Plus measles can cause this less than lovely condition: Subacute sclerosing panencephalitis, SSPE, http://www.ninds.nih.gov/disor.....alitis.htm

It is where you get to see a child slowly lose brain function and then finally die.

Colleen, go back and read the list of books I listed.
HN
October 9th, 2007
23:52:20

I would also like to remind Colleen that there is absolutely no real evidence that the MMR vaccine causes autism, and that also goes for the other vaccines.

If you have real evidence to the contrary, please present it.

It should be of this kind of caliber:
http://content.nejm.org/cgi/co.....57/13/1281

and those listed here:
http://www.immunize.org/autism/#journalarticles
bullet
October 10th, 2007
09:05:18

“But so now instead of all these kids dying of some disease like measles, they are living with Autism?? That is suppose to be better???”

My older son is autistic. He needs a lot of support to help him understand even relatively simple things, he is verbal and can list a lot of objects, knows numbers, colours and shapes but cannot tell you what he likes to eat, or how old he is, or that he needs changing. He is probably hyposensitive in a lot of ways. He understands and copes best in a small, quiet environment with lots of visual prompts and lots of familiar routines. He tears books up, has semi regular poo smearing sessions (which is par for the course at his age, four, but he can’t tell us he needs to be cleaned up) and loves to mouth at objects, thereby giving me a good scare when I catch him with a penny or a small piece of lego in his mouth.
He loves to hug and kiss his younger brother. He loves to climb on people’s laps and wave their hands and hair about and touch their faces. He laughs with delight at “incy wincy spider”, “humpty dumpty”, “this is the church” and “round and round the garden”. He loves looking at books or building towers. His laugh makes people turn around and smile when they hear it, the bus driver that takes him to his nursery says he’s a lovely lad, everybody who knows him says it’s rare that he’s unhappy or in a bad mood.
So yes, in conclusion, it’s a hell of a lot better him being as he is than dying of measles. Does he need help and support? Undoubtedly. Is he suffering, in pain, his life expectancy diminishing? Absolutely not.
Kay
October 11th, 2007
06:29:29

I am shocked as I sit and read all the comments on here. I just got done reading Jenny’s book. What her, and her child went through I would not wish on anyone. I cried as I sat and read, and imagined my child going through the same thing. My son is 2 1/2, and it scares the hell out of me to think that one day he can be fine, and the next, not even in this world. As if he is lost. I love him with all of my heart, and can understand how Jenny felt watching her son, and not being able to help. I would do the same, and plan on looking at all my options. Why do we not question these things, and instead we talk as if we know the answers. We don’t. We are always hearing of recalls on Meds. People sick because of stuff that we shouldn’t put in our bodies, but Dr.’s say it’s ok. Wake up people. Pay attention. I’m not saying to rule it out, and not take the medications, but hello….. Stop popping pills just because a Doctor says it’s ok. Read up, look it up, and educate yourself. I do. I also know that there is a lot of crap on the internet, but I don’t just take the first site I go to, and run with it, I keep searching, and note the repeats of certain things.

I’d actually heard about mercury being in the shots, about 2 years, or so ago, and it causing autism. I thought “Well, atleast they caught it, and will take it out.” I could not believe it when I heard that it is still in there. This is stuff that you shouldn’t even touch to your skin, and we are putting it into our children. Yet we are super freaked out with all the lead in paint recalls. From what I’ve read, it’s ok to touch lead, just not injest it. Mercury should not even touch the skin. Does that make sense?

Jenny is just a person who watched her child go through way more than most anyone would want to watch a child go through. With that, it motivated her. That should be applauded!
Kay
October 11th, 2007
06:33:57

And, if you read it right, that is not what Colleen is saying. She is NOT saying that death is better than Autism.
original cali biomed xprt
October 11th, 2007
07:04:53

Hi, Kay:

Speaking of the internet and educating one’s self, do you use PubMed regularly?
bullet
October 11th, 2007
09:55:12

Kay, can you explain what you thought that Colleen meant when she said:
“But so now instead of all these kids dying of some disease like measles, they are living with Autism?? That is suppose to be better???”
Gonzo
October 11th, 2007
13:16:19

Simple and blunt question – would you prefer your child to be dead or autistic?

That’s what Colleen seems to be inferring.

Kay? What about you? How would you answer the question?
century
October 11th, 2007
13:31:50

“Simple and blunt question – would you prefer your child to be dead or autistic?”

From the murders of ASD kids here and in the US it would seem that some people choose dead!
And that is a problem that needs addressing.
HN
October 11th, 2007
14:51:49

Kay, I would suggest some better reading material:

No Time for Jello by Berneen Bratt
Not Even Wrong by Paul Collins
Unstrange Minds by Roy Richard Grinker

Kay said “I’d actually heard about mercury being in the shots, about 2 years, or so ago, and it causing autism. I thought “Well, atleast they caught it, and will take it out.” I could not believe it when I heard that it is still in there. This is stuff that you shouldn’t even touch to your skin, and we are putting it into our children. ”

Uh, huh… So those of us who played with mercury from broken thermometers are doomed! Oh, good grief. Chlorine gas is deadly and will kill you very painfully, and sodium explodes when it contacts water. So are we now supposed to avoid table salt because those two deadly elements make up most (actually) all of salt?

I would suggest you read this link and look at the actual figures for thimerosal:
http://www.fda.gov/cber/vaccine/thimerosal.htm

Take note that Jenny, PhD Google U., has blamed the MMR. This a vaccine that has been used in the USA since 1971, and has never contained thimerosal.
kay
October 12th, 2007
01:48:12

Gonzo, I would have to say that what she ment was that depending on the level of autism, that Autism may not be much different from death. When your child is in another world, and does not realize what is going on, and has to be taken care of for the rest of their life, is NOT a wonderful thing. She wasn’t saying that if they have autism that they might as well be dead. She’s saying we want heathy children!

And I have to say that all of you made fun of Jenny about going on the internet to get info, but all, that you all can throw out to make a point is web sites! So, what’s the differnce? Is that where you got your info about all of this. Funny what we will believe. I’m shocked that you all are ok with all of this.

HN, did you eat the mercury? What would’ve happened then? You got a website for that too?

I think all of you are reading every other line, and making up what you want. Stop looking at this with closed eyes, and open up your minds. Thank goodness the rest of the world does not think like all of you!

Your pissed about the comment Colleen made, but the way I hear all of you talking, it’s ok to have a world where all of the Children are Autistic. What would the world be like then? The statistic of autism are going up, and up at a very high rate. In fact, if we all thought like you, we probably would live in a world where most children born would be autistic.

And, one more thing…..The info she was looking up, she was getting from mothers of autistic children. They were giving her info, and she was going from there. Are those mothers wrong to you all too? They are living with Autism. Are you?

you all really need to read the whole book, and stop taking bits a pieces from it, and coming up with your own version.
Joseph
October 12th, 2007
02:45:58

Gonzo, I would have to say that what she ment was that depending on the level of autism, that Autism may not be much different from death. When your child is in another world, and does not realize what is going on, and has to be taken care of for the rest of their life, is NOT a wonderful thing. She wasn’t saying that if they have autism that they might as well be dead. She’s saying we want heathy children!

I’m quite sure that even the most severe autistic child in the world would be likely to prefer life over death.

You might want perfectly healthy children, but that doesn’t mean that what you believe are “unhealthy” children don’t want to exist. They probably do and they have a right to. Even someone in a comma has a right to life.
Kay
October 12th, 2007
03:09:05

Joseph, you’re right, they do have a right to live. It’s amazing, I’ve asked other people I know, how they take that statement that Colleen made, and everyone I know, gets it. Why don’t you all? That’s what this is about Joseph.

Would you want your child to have Autism, and be lost in some world, with no conection to life?

Or would you rather them be dead?

If the answer is no to both, then there is no difference.

YES, we get that death is worse. DUh! but we answer NO to both.

They are both bad, but one can be fixed, let’s do it. Let’s stop the epidemic, and make the numbers go back down. For the children.

Joseph, autistic children cannot fathom life or death. they have no idea what either is. If you asked them if they prefer to live or die, they cannot answer you. Is that how we want our children to be? NO! We want them to live, and know the difference.
Gonzo
October 12th, 2007
03:35:26

Uh, no, Kay. A lot of autistic children can fathom life or death. Don’t belittle and degrade autistics. I’m sure if you ask any of the adult autistics here, they can fathom life or death. I know autistic kids that are five or six years old that understand that when they step on an ant, it’s dead.

Your view of autism seems to be one of children sitting in the corner in a total trance-like state, drooling all over themselves and brain dead to the world. I’ve got news for you – not all autistics are like this. There are varying degrees of autism.

What prejudice. Do your research before you continue to insult the intelligence (of which there is some!) of many autistic people and their families. Go to a walk for autism and see how many autistic kids are out there that are walking with their parents that aren’t dead to the world. “No connection to life” my rear.

Damn Kartzinel and his stupid introduction to Jenny’s book. Now everyone who reads that thinks all autistics are brain dead and lost to the world….
Gonzo
October 12th, 2007
03:37:56

By the way, Kay…

Are those mothers wrong to you all too? They are living with Autism. Are you?

Yes. My son is autistic and, as you say, “lost in some world, with no conection to life?”

And you couldn’t be more wrong.
Ms. Clark
October 12th, 2007
03:41:55

There is absolutely no evidence that there’s ever been an epidemic or anything close to an epidemic, Kay. You’ve been listening to people who have been lying to you.

You obviously have very poor skills for telling the difference between good sources of information and poor sources of information (those would be the ones that push the epidemic and those who blame vaccines and “toxins” for autism”) . Even Autism Speaks knows there is no evidence for an epidemic. It’s just that they know there’s money in harping an epidemic so they try to have it both ways.
http://autismdiva.blogspot.com.....peaks.html

Check out the interviews with experts explaining how they know there hasn’t been an “epidemic” at all.
http://www.autismspeaks.org/wh.....rviews.php
Ms. Clark
October 12th, 2007
03:53:35

And I have an autistic child. The kids who are sitting alone in a corner drooling one minute can be up learning things another minute, the most “extreme” caricatures of “autistic” people are not just “autistic people,” they are autistic people who have been systematically abused and neglected.

I dare say even the kids and adults who have been abused only want the abuse to end, they don’t want to die. And you, Kay, are abusing autistic people with your repeating of stereotypes of autistic people being basically worthless and nearly better off dead or just better off dead.

How’d you like it if people decided that women like you are worthless and of no use to humanity, that’s you’d probably be better off dead. I think you’d take offense to that. You are saying things that make it harder for my child to have quality of life. I will thank you to stop verbally deriding, degrading and abusing my child.
original cali biomed xprt
October 12th, 2007
04:23:32

Kay there is a significant difference between scientific-based websites from the US Government, Academia; and Indexed Journals made available online versus proprietors who purchase google adwords to hawk their wares to the consumer. Ms McCarthy, in her brief stint at googling, admittedly clicked on a google advertisement and it was from that business-person’s ad where she got her agenda-driven mis-information. And that may be acceptable (in her eyes) for her child, but please understand that many others will find that neither acceptable nor adequate when it comes to obtaining health information for their own children.
Kay
October 12th, 2007
04:30:27

Gonzo, in no way do I think that ALL autistic children are brain dead, and once again you’ve read my statement, and come up with some off the wall idea of what i think.

I am familiar with autism, and do know autistic children, one that I had no idea he was till they told me. One that was treated for ADD because they had no idea what was wrong with him.

My Mother is very familiar with autism, she worked in a classroom with them for years, and her and I have had talks.

You can think I’m stupid, and crazy all you want, but…. I will not stand by and let autism happen to my child because someone says it’s not from mercury in the vaccines!

Think back to the days when Vicks vapor rub was taken orally, Or when cocaine was used to treat things. Someone figured out that it wasn’t good to do that, and it wasn’t from someone that said… “nope, it’s fine to put that in your body”.

Now Gonzo, you answer my guestion… Are those mothers that gave Jenny that info wrong?
Kay
October 12th, 2007
06:04:55

And again you have read something that I said, and taken it all wrong. You are talking about me, saying things about them being dead, and dying. I was commenting on a statement that someone else made.

I’m finished with my statements on here because it’s like talking to a brick wall. Jenny never said to not vaccinate. She never said one shot was the problem. She never said that they are all the same. She’s made it very clear that all autistic children are ALL different.

The reason I ever said anything on here at all is because I was shocked at how you all made fun of her and what she is doing.

And Original…I can’t believe that you mentioned a Government site. I will say it gave me a good laugh though. I’m sure that all the info the Government tells us is true.

Ms. Clark, in no way, is what I am saying keeping your child from having a quality of life. If my eyes were closed to this, then I would. It’s being close minded that would stop that from happening.

I love children, and love my son very much. I’m for keeping them safe, and believe it’s the parents job to do that. I stand on Jenny’s side for now. You have your beliefs and I have mine. I will check out the sites that you all have left for me to, because I have an open mind. I’m gonna weigh my options with my son, and make sure I do everything in my power to keep him safe in every way. I do not believe everything I am told, but do know, that I believe in checking into it if I have doubts. This isn’t something Jenny made up. I heard about it years ago.

I suffer from Astma, and Jenny says that she believes that something was causing the things that were happening to her son. I believe that too. I have cronic Astma, and have to take medicine everyday to keep it under control. I was born with it, and almost had it under control for years, then one day it came back, and no control of it. I ask Why all the time. WHAT CAUSED IT? It’s a mission of mine to hopefully find out why… Or… I could just listen to the Doctors who say it’s not this or that, but won’t test me, and just keep giving the medicine that has major side effects….

NOPE… I don’t accept that!!

Unfortunatly, you all have this idea that I’m not educated enough, think autistic children should be dead, or want to be dead, or are close to dead, and are all the same. You are SO wrong.

I will not waste anymore time here.
qchan63
October 12th, 2007
06:14:11

I consider myself a pretty diplomatic person, and as the one who wrote the original blog post i suppose i should try to retain some sense of decorum.

But i’m having a really hard time holding my tongue as, a month after the fact, Colleen and Kay weigh in here with their ignorant, half-assed and downright disgusting comments.

Just so you two understand: The people you are lecturing to on this blog are for the most part either parents of autistic people, or autistic themselves. They are people who have been looking at and living with this topic for a long time. They—we—know it firsthand, not based on what some friend said or what a mother saw or what friends of “Jenny” (so nice that you’re on a first-name basis) told her.

So please, please don’t try to explain to us why Colleen’s sarcastic question as to why autism should be considered better than death by measles wasn’t offensive. It was very clear what she was saying. We all understood what she meant.

Seriously, what kind of people are you, to come on here and make ridiculous, trite, cliched generalizations about autistic people “living in their own world,” and to express (or defend) inhuman sentiments about the worth of people we love and care for?

Kay says, “educate yourself. I do.” The falsity of that statement is glaringly apparent to everyone here.

When it comes to my son and his future, i don’t fear what’s in the environment nearly as much as i worry about what’s in the brains of the people he’ll have to deal with as he grows up. People who express ideas like these ones.

Kay also says: “In no way do I think that ALL autistic children are brain dead.” Really? How gracious of you. How many are “brain dead” then (putting aside the fact that a person who is brain dead is generally not conscious, which rules out pretty much all the autistic people i’ve seen)?

10 percent? 20 percent? More? Is it listed in Jenny’s book somewhere?

Honestly. You should be ashamed.
Kassiane
October 12th, 2007
06:19:46

Ive been dead.

Give me life.

Give me life with epilepsy, autism, the Rett mutation and a mitochondrial disease (both of which do funky things to some processes, University of Google will tell you), Ehlers Danlos Syndrome, whatever else they decide to say I have.

It’s still better than death. I know the difference.

We all do.

Those mothers were wrong. Lying or mistaken, whichever, it still adds up to WRONG.
original cali biomed xprt
October 12th, 2007
07:40:31

Ho-Hum. Kay you’re trolling. Of course, I knew you’d make a snide comment about the US Government, but the site is PubMed and it’s a service by the Gov’t whereby peer-reviewed articles are indexed for all to read. Any practitioner who believes in his or her treatment for autism and does not attempt to publish it and submit to peer-review (so all kids can have access via their doctors), is not sincere. Period.
Gonzo
October 12th, 2007
14:05:50

One last response to the troll, and I’ll stop feeding it. Especially after qchan63’s excellent comment.

Are the mothers wrong? Potentially. I can’t take anything that comes out of “Jenny’s” book as scientific fact as most of it is researched on Google and based on unproven and scientifically untested testimonies. “Talking to mothers” doesn’t equate to a research study to me.

“Jenny” is no more an autism “expert” than I am, based on her “qualifications” that I see splashed all over of being a mom of an autistic kid and doing research on Google. She just has an agent, a (somewhat) recognizable name, a book and a publicity machine. Hardly what I would call a good source of information.

Oh. And she’s got the “Autism Whisperer.” How could I forget about that…
Joseph
October 12th, 2007
14:49:03

I’ve asked other people I know, how they take that statement that Colleen made, and everyone I know, gets it. Why don’t you all?

Because here people generally respect autistics, and some of us are autistic.
Joseph
October 12th, 2007
14:52:29

Would you want your child to have Autism, and be lost in some world, with no conection to life?

Or would you rather them be dead?

Kay, I must say you’re clueless.

I have a son who is autistic, very much classically non-verbabally autistic. Asking if I’d rather him be dead is offensive and thoughtless.

My son is accepted and loved, and brings joy to his family just as much as his typical sister. He’s not a burden or an annoyance.
Joseph
October 12th, 2007
14:55:17

Joseph, autistic children cannot fathom life or death. they have no idea what either is. If you asked them if they prefer to live or die, they cannot answer you. Is that how we want our children to be? NO! We want them to live, and know the difference.

Plus, evidently, you don’t know the first thing about autism, Kay.
HN
October 13th, 2007
03:08:37

Kay said “HN, did you eat the mercury? What would’ve happened then? You got a website for that too?”

I said that liquid mercury was not a problem, but breathing in mercury vapor was to.

And yes, I do have several papers on that also. They can all be found at PubMed, something you don’t seem to know about, understand or how to use.

Here is one:
http://www.ncbi.nlm.nih.gov/si.....h=12040263

If you look at the right hand side of the page you will see more similar case reports.
Erica
October 13th, 2007
04:10:52

Kay said: “Would you want your child to have Autism, and be lost in some world, with no conection to life?”

My kid has a connection to life, is not lost and lives right here on planet earth, not some other world. just wanted to set the record straight.
Kay
October 13th, 2007
05:15:34

There is no single treatment protocol for all children with autism, but most individuals with ASD respond best to highly structured educational programs. Some of the most common interventions are Applied Behavior Analysis (ABA), Floortime Therapy, Gluten Free, Casein Free Diet (GFCF). Speech Therapy, Occupational Therapy, PECS, SCERTS, Sensory Integration Therapy, Relationship Development Intervention, Verbal Behavior Intervention, and the school-based TEAACH method.

I said I wasn’t coming back, but I also said I would check out the sites you left me. I did, and the info from above is from one the sites. It is exactly what Jenny is saying in her book, but you have not read it.

To Joseph:

Would you want your child to have Autism, and be lost in some world, with no conection to life?

Or would you rather them be dead?

These two statements do not go together. I did not say anything about, “rather them be dead”. I simply said that, that is not what Colleen ment. Do you truely beive that Colleen would rather them be dead? Come On!

You all are very sad. You’ve been extremely rude, and have not given me any reason to believe you, but your websites. Sorry, but I found nothing on there to make me “see the light” You’ve called me a Troll, and Prejudice. You’ve taken mine, and Colleen’s words and twisted them around to try and make us sound like idiots. You tell me to get educated. You tell me not to speak of things that I don’t know about. I do not claim to know everything about autism, but I do know some.

You should do the same though. Don’t speak on things you don’t know about, and you don’t know what’s in Jenny’s book. You’ve taken tiny snippits from the book,( I’m sure it’s just parts that you’ve heard about her and there) and put your own words around them to make them sound the way you want them to sound.

Wow, what a community of people to make fun of a Mother of an autistic child.( I guess she’s just a big fat liar to you all though)

It’s funny how you all never really answered all of my questions.

If you are so educated on this. Tell me, what causes it? What are the treatments? what are the signs? Do some of them really have stomach problems, and if so , why?

I’m sure I’ll be back to see how you twist my words this time.
Kay
October 13th, 2007
05:47:08

Gonzo said: “Damn Kartzinel and his stupid introduction to Jenny’s book. Now everyone who reads that thinks all autistics are brain dead and lost to the world….”

I never, EVER said Brain dead!! Gonzo added that in, and in my one statement that it is in, I was trying to defend myself and only repeated what he said, but unfortunately, I said that I don’t think that all of them are brain dead. I’m not stupid like you all think I am. I know what brain dead is, and know the difference between autism, and being brain dead. I know that they are beautiful children, and adults, and are loved, and bring life to the families they are in. I never want to see them hurt, or dead, and only want for them what I would want for any child or adult,life, happiness and love!
HN
October 13th, 2007
07:39:52

Why is it that a celebrity’s experience is more valid than those of Kev, Joseph, Gonzo, Ms. Clark, Kristina, original cali biomed xprt, Maya M, Estee, qchan63, brett, Steve D, Club 166, Suzanne, Emmanuel, HeatherS, jessamom, Colori, Lucas McCarty, bones, Erica, AngryMom, bullet, Jennifer, Prometheus, Regan, Matt, Toad, wskrz, Jon, and Bink?

Oh, and some of the previous listed are actually autistic. As is Kassiane… why should we listen to a celebrity over the RettDevil?

What special expertise do Colleen and Kay have over those folks?

Kay asked “If you are so educated on this. Tell me, what causes it?”

The most recent research points to genetics. The same reason my son had seizures (there is a family history of migraines, which are closely associated with seizures… read Migraine by Oliver Sacks), and the same reason he has hypertrophic cardiomyopathy.

“What are the treatments?”

Most of them are educational. Usually speech/language therapy, along with OT/PT… You might check with some of other blogs on the AutismHub, especially The Interverbal blog by Jonathan.

“what are the signs?”

Read this:
http://www.nimh.nih.gov/health.....tion.shtml

“Do some of them really have stomach problems, and if so , why?”

It is not really part of the diagnosis of autism. Lots of kids have stomach problems, for various reasons. Some children do actually truly have food intolerances. I knew one little girl who had issues with soy (which did not please her Korean born mom!). There are children who actually have celiac disease, or are really lactose intolerant (my sister has been lactose intolerant since the day she was prematurely born!).

It is not really an autism “thing”. The only reason it is associated with autism is that a lawyer happened to find a willing doctor to do the research he wanted. It just so happened that doctor was not a pediatrician but a gastroenterologist (Wakefield). I am sure if the lawyer found a dermatologist to do the “research” and come up with the paid for results you would be asking about skin issues.

Digestive problems happen, and the real reasons need to be discussed with a pediatrician tuned into the issue.
Regan
October 13th, 2007
07:52:34

With apologies to the author and blog—I have been following this thread with some irritation and 2nd thoughts about posting

Kay,
Take a break.
You may have read a lot, but as you have already stated, you do not have a child with autism that you have lived with 24/7 for years. In my case, 8+ years, which may be on the low end for some of the parents commenting on this blog. Certainly I am not going to represent my 2nd hand opinion or experience as those of the folks who are autistic who also comment here.
Jenny McCarthy’s experience and opinion is hers. My experience and opinion differs, and I am educated. All those intervention models are very familiar to me.
Have your opinion—but please stop patronizing and proselytizing.
Ms. Clark
October 13th, 2007
08:08:50

Good grief if experience is what counts, my experience trumps the dumb bunny McCarthy’s experience by a couple of decades plus a year or so. McCarthy is a liar. She contradicts herself in order to make money. Her son was a “crystal child” and capable of super-normal powers, then suddenly he’s not, because autism is just another word for crystal child, and autism is devastating and leaves the child without a soul or whatever.

Jenny McCarthy is pulling a scam in order to keep the attention coming to herself that she craves. The woman is the very definition of an exhibitionist and she’s just about as dumb as a brick, with apologies to bricks everywhere who would not be capable of the kind of disgusting behavior and damaging rhetoric that damages my child’s quality of life.

Once more. Stupid Jenny McCarthy is damaging my child’s quality of life by insinuating that autism is caused by yeast, and vaccines, and whatever else, and by describing it in heinous derogatory and demeaning (and false) terms. She’s an idiot and worse, she’s a liar and exploiter.

If you love Jenny for her “courage” or “insight” or whatever, Kay, that’s fine. But you are not the parent of an autism spectrum kid, and you are not an autism spectrum person yourself. I am both. Your opinion of the queen of bargain-basement sleaze, Ms. McCarthy, doesn’t count for much with me.
666sigma
October 13th, 2007
14:29:36

I want to thank Ms. Clark for her raging rant. This little post proves exactly what I have been saying about the AS/ND community’s view on Jenny McCarthy. They simply can’t handle a bio-med message getting out to the public.

HN, I don’t believe that AS qualifies someone to be a spokesperson for ASD. It might qualify them to speak for AS, but the notion that they can or should speak for the entire ASD community is flawed. Jenny McCarthy may not be the best spokesperson for ASD, but you sure don’t want someone like Ms. Clark as the spokesperson. She would turn all parents into curebies overnight.

Our best science indicates that there are at least 100 genes involved in ASD. In addition, the study of twins shows that genetics play a significant, but not all inclusive role in autism. For identical twins, if you look for the same diagnosis/behaviors, the rate of concurrence drops to 30-70% depending on the study. Clearly, there are environmental factors which play an important role at least in the severity of the symptoms.

Whether you want to believe it or not, there are thousands of parents that report improvement by simply changing diet and/or adding the right supplements. Jenny McCarthy is just one of many.

My experience is similar to JM’s. My child had the PDD-NOS diagnosis removed within 7 months of initial diagnosis. There are still some language delays, the occasional stimming and even hand flapping when stressed. The fine motor skills are not where they need to be, but progress has been made on all fronts. I attribute most of the progress to ABA, but the diet/supplementation has helped with focus.

The effect of dairy seems to be dramatic. I cannot and do not speak for anyone else’s child, but my experience matches a lot of the “recovered” stories on the internet. While I don’t think it is wise to experiment on children, a smart parent can figure out what can and cannot be safely done.

YOU ARE WHAT YOU EAT.
Joseph
October 13th, 2007
14:39:03

HN, I don’t believe that AS qualifies someone to be a spokesperson for ASD. It might qualify them to speak for AS, but the notion that they can or should speak for the entire ASD community is flawed.

Interesting. So if you’re completely off the spectrum, you can be an expert in autism all you want. If you’re in the spectrum, you should shut up. I like that logic.

Parents are experts on autism, but hold on. If the parent is on the spectrum, then they can only speak about Asperger’s. That’s very funny, isn’t it?

BTW, Kassiane doesn’t have Asperger’s. Inform yourself.
Kassiane
October 13th, 2007
14:58:09

laughs so hard she chokes

I most certainly don’t have Asperger’s. Officially it’s ON PAPER as MecP2 associated Autistic Disorder/Atypical Rett Syndrome. Depends which office you’re at. They keep changing the order of the words but not to “Asperger Syndrome”, cuz that’s not the box I fit in.

And I think I don’t need to say again that Jenny McCarthy doesn’t speak for me. It has nothing to do with ideology. It has more to do with it’s high time people started asking us what we think.
Kev
October 13th, 2007
15:38:26

“Whether you want to believe it or not, there are thousands of parents that report improvement by simply changing diet and/or adding the right supplements.”

Yeah? Where? Apart from your son who only had autism for 7 months?
bullet
October 13th, 2007
15:56:59

“HN, I don’t believe that AS qualifies someone to be a spokesperson for ASD.”

You are aware, I take it, that Aspergers is classed as one of the five subsets of the Autistic Spectrum by the DSM IV criteria. These are Autism, Aspergers, PDD-NOS (also sometimes known as Atypical Autism), Retts and Childhood Disintegrative Disorder. There is an awful lot of overlap between at least the first four (though Retts has some other factors which I’m not qualified to write about but Kassiane’s blog should help). In terms of Aspergers and Autism if you look up the criteria for both you will see how much they overlap. On a personal level because I had communicative phrases at the age of 3 I fit the criteria more for Aspergers, but then it also says no delay in self help skills, which I definitely have difficulty with, so you see how it’s not clear cut? My older son fits the criteria for autism. We both have sensory issues, both perceive things differently (in terms of what we look at, what we focus on, can’t say what else with my son at the moment). We both need routines and have perseverations. We both have communicative difficulties and differences, although my son’s are, at this stage, more pronounced. We both have co-ordination or motor control issues, although he has better fine motor skills than me. If you look up Kanner’s original Autistic children and look up Donald and I think a couple of the other lads you’ll get some idea of what my son is like. If you take out the particular language issues of echolalia and not appearing to use language to communicate, you’ll get an idea of what I was like as a child and am still like in a lot of ways, though greater independance for me has helped with some things I find difficult.
To have such an arbitrary distinction as language and even then that is not to say that people who are ASpergers have no language or communication issues, ensuring that AS people cannot speak alongside people who are autistic (and bear in mind some people receive the AS diagnosis rather than the autistic diagnosis based on the decision of whoever assesses them and that decision may not be agreed by others), when movement, perceptions, sensory issues and a whole host of other things may equally apply to both seems very strange to me. There was talk I think of removing the autism and aspergers diagnoses and instead saying whether a person was on the spectrum, but I don’t know if anything is happening with that.
666sigma
October 13th, 2007
17:29:48

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
October 13th, 2007
18:58:39

“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?
bullet
October 13th, 2007
19:11:42

“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.
666sigma
October 13th, 2007
23:34:02

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).
Jon
October 13th, 2007
23:53:32

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
October 14th, 2007
00:39:13

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.
Joseph
October 14th, 2007
00:44:01

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?
HN
October 14th, 2007
02:19:07

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
Colleen
October 14th, 2007
02:45:29

I apoligize for the obsenity. Please delete it.
Ms. Clark
October 14th, 2007
04:09:04

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.
Kay
October 14th, 2007
07:22:45

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?
Joseph
October 14th, 2007
14:15:08

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).
666sigma
October 14th, 2007
15:06:04

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.
666sigma
October 14th, 2007
15:14:18

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.
Joseph
October 14th, 2007
15:31:59

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.
Joseph
October 14th, 2007
15:50:58

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.”
666sigma
October 14th, 2007
16:15:52

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.
666sigma
October 14th, 2007
16:45:58

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.
Joseph
October 14th, 2007
17:09:54

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.
notmercury
October 14th, 2007
17:32:30

“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?
Matt
October 14th, 2007
17:41:10

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?
Joseph
October 14th, 2007
17:51:32

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.)