Jenny McCarthy and the problem of illusions.
From New Scientist: Mind tricks: Six ways to explore your brain
It shows in a fun way how much and how little we know about how the brain works and something about how we can't always trust what our eyes and ears tell us, and shares the secrets of some illusions we may experience in our everyday lives.
This stuff is fascinating. There are ways that this information can be used in autism research to identify how it is that some autistics have problems in understanding speech. And perhaps why they aren't as easily fooled by some visual puzzles.How does your brain work? Brain imaging, transcranial magnetic stimulation, and similar advanced techniques have given neuroscientists huge insights into this question. Yet studying the brain doesn’t have to be such a high-tech enterprise. Simple experiments can still probe the inner workings of the brain, and many of these are easy to set up at home or are available on the internet.
Try them on yourself and you will experience first-hand some of its strangest, most amazing workings – facets of brain function that scientists are only just starting to understand. You’ll see aspects of perception, memory, attention, body image, the unconscious mind – and the curious consequences of your brain being split in two.
1 Seeing isn't believing
TAKE a moment to observe the world around you. Scan the horizon with your eyes. Tilt your head back and listen. You're probably getting the impression that your senses are doing a fine job of capturing everything that is going on. Yet that is all it is: an impression.
Despite the fact that your visual system seems to provide you with a continuous widescreen movie, most of the time it is only gathering information from a tiny patch of the visual field. The rest of the time it isn't even doing that. Somehow from this sporadic input it conjures up a seamless visual experience.
What is going on? Bang in the middle of your retina is a small patch of densely crowded photoreceptors called the fovea. This is the retina's sweet spot, the only part of the eye capable of seeing with the rich detail and full colour we take for granted. This tiny spot - which covers an area of our visual field no bigger than the moon in the sky - feeds your visual system almost all of its raw information.
To build up a big picture, your eyes constantly dart about, fixating for a fraction of a second and then moving on. These jerky movements between fixations are called saccades, and we make about three per second, each lasting between 20 and 200 microseconds.
The curious thing about saccades is that while they are happening we are effectively blind. The brain doesn't bother to process information picked up during a saccade because the eyes move too rapidly to capture anything useful. All in all, your visual system works like a man blundering around in the dark waving around a flickering torch with a very narrow beam.
Despite the fact that you don't normally notice saccades, you can catch them in action. Look at your eyes close-up in the mirror and flick your focus back and forth from one pupil to another. However hard you try you cannot see your eyes move - even though somebody watching you can. That's because the motion is a saccade, and your brain isn't paying attention. Now pick two spots in the corners of your visual field and flick your gaze from one to the other and back again. If you're lucky you'll notice, just barely, a brief flash of darkness. This is your visual cortex clocking off.
So how does your brain weave such fragmentary information into a seamless movie? This remains something of a mystery. The best explanation, according to Andrew Hollingworth of the University of Iowa in Iowa City, is that your short-term and long-term visual memories retain information from previous fixations and integrate them into a here-and-now visual experience (Visual Cognition, vol 14, p 781).
There is also some guesswork going on. You can get a feel for this from the frozen-time illusion - the sensation that you sometimes get when you look at a clock and the second hand appears to freeze momentarily before tick-tocking back into action.
This happens because of saccades. To compensate for the temporary shut-down of vision, your brain makes a guess at what it would have seen, but it does so retrospectively. So the 100 or so milliseconds of blindness gets back-filled with the image that appears after the saccade is over. If your eyes happen to alight on the clock just after the second hand has moved, your brain assumes that the hand was in that location for the duration of the saccade too. The "second" then lasts about 10 per cent longer than normal, which is enough for you to notice.
The weirdness isn't confined to vision. Your auditory system is also full of gaps and glitches that the brain cleans up so we can make sense of the world. This is especially true of speech.
In everyday life we encounter lots of situations that obscure or distort people's voices, yet most of the time we understand effortlessly. This is because our brain pastes in the missing sounds, a phenomenon called phonemic restoration. It is so effective that it is sometimes hard to tell that the missing sounds are not there.
A good demonstration of this effect was published last year by Makio Kashino of NTT Communication Science Laboratories in Atsugi, Japan. He recorded a voice saying "Do you understand what I'm trying to say?" then removed short chunks and replaced them with silence. This made the sentence virtually unintelligible. But when he filled the gaps with loud white noise, the sentence miraculously becomes understandable (Acoustic Science and Technology, vol 27, p 318).
"The sounds we hear are not copies of physical sounds," Kashino says. "The brain fills in the gaps, based on the information in the remaining speech signal." The effect is so powerful that you can even record a sentence, chop it into 50-millisecond slices, reverse every single slice and play it back - and it is perfectly intelligible. You can listen to Kashino's sound files at http://asj.gr.jp/2006/data/kashi/index.html.
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In fact, your mental body map is an absolute sucker for visual information. This year Frank Durgin of Swarthmore College in Pennsylvania set up the illusion as described above but instead of touching the rubber hand he merely "stroked" it with light from a laser pointer, leaving the unseen hand alone. Two-thirds of 220 subjects reported a sense of ownership of the rubber hand and said they had the sensation of heat and even touch from the laser pointer (Psychological Science, vol 18, p 152). "It's obvious the hand is rubber - no one is fooled at all," says Durgin. "But if your brain decides it's your hand, all the conscious awareness in the world won't change it."If you can't get hold of a fake hand, there are other (though less reliable) ways to experience the illusion. Some people can be fooled into believing a piece of wood has replaced their hand. Around half of people can even be made to feel a table top is part of their body. Sit at a table and put your hand out of sight underneath. Get someone to tap and stroke this hand while doing exactly the same to the table top directly above. If you watch the table top, you may experience the illusion that the table has become part of your body.
But now to go from the sublime to the surreal, Jenny McCarthy is the mother of a five year old autistic boy. She is an ex-Playboy centerfold and "model" who made a name for herself for having absolutely no shame. She brags about having a big mouth that will say anything. With this big mouth she has vomited on camera and then eaten the (presumably fake) vomit. When she was younger she was the "it girl" (ick girl?), that is if you needed a buxom bleach-bottle blonde who could convincingly play a total airhead and who would pose as someone passing gas in a crowded elevator, for cash, of course. Wikipedia calls her "toilet humor" "grotesque". She wrote the script for a movie called, "Dirty Love," which she also starred in. The movie featured McCarthy sitting in a quantity of what was supposed to be her menstrual blood. Wikipedia notes about Jenny:
In March 2006, she was given Razzie Awards for "Worst Actress," "Worst Screenplay," and "Worst Picture" for her work on Dirty Love, which also netted her then-husband, John Asher, a Razzie for "Worst Director."After her divorce from Asher, she later took up with Jim Carrey. She says that she and Carrey were destined to be together by the stars (this is astrology talk). Maybe they were destined to be together, McCarthy had a small part in the TV series The Stupids and her boyfriend starred in a title role in the Dumb and Dumber(er) duology. Maybe they could co-star in a movie and call it "Pathetically Inane." Wikipedia says she will next be seen in a movie called, Witless Protection. There are other weird things to note about Jenny McCarthy and what she's done, things that tend to make one doubt the woman's intelligence, but they tend toward the even more grotesque, so we won't go there. But one thing we should note is her somewhat brief reign as top Hollywood Indigo Mom.
As a headline grabbing TV Star and best-selling author, Jenny McCarthy may be the last person one might expect to find coming out and declaring herself an Indigo. Well, it just goes to prove what we say in our Mission Statement, humanity is evolving and we are the proof!(Found here on "Children of the new earth".)
...What impresses us even more is that, in addition to being an absolutely delightful, warm, funny, dedicated lady, Jenny is putting her money where her mouth is by starting up a website especially for Indigo Moms.
Launched in late April 2006, Jenny's website at www.indigomoms.com provides a meeting place where Indigo Moms can meet others, organize get Momme and Me get together groups, chat in the Indigo Cafe, read articles, and chat with Jenny herself about different topics on her Forum each month.
Says Jenny: "There were so many times I would be sitting around with my son, Evan, and wish that I could join a 'mommy and me' group that loved talking about Indigos and Crystals. I always felt like there was no one around me who 'got' it. That’s why I came up with the idea to have women post their info so as more mommies become enlightened they can contact someone in their own neck of the woods to chat and share stories with.
But if you go looking for indigomoms.com now you won't find anything. You can find some of the pages in the Internet Archive, but some pages seem to have been removed from there, too. She had some weird stuff in there about treating the problems of crystal children with gemstone necklaces, this is crystal therapy. There were links from her site to a website that sold gemstone necklaces with dosing recommendations. Like, dude, you wouldn't want to overdose your Crystal kid on too many rose quartz necklaces, or just go and mix hematite with malachite, not unless you had a bunch of moonstone on hand!
Since you can't go to straight to Jenny's indigomoms.com to figure out what an "Indigo" is, here's a partial explanation:
The name itself indicates the Life Color they carry in their auras and is indicative of the Third Eye Chakra, which represents intuition and psychic ability...Cue the Twighlight Zone music.
The Crystal Children began to appear on the planet from about 2000, although some date them slightly earlier. These are extremely powerful children, whose main purpose is to take us to the next level in our evolution, and reveal to us our inner power and divinity. They function as a group consciousness rather than as individuals, ...
Apparently, you can be born an Indigo but move "up" to being a Crystal. So according to some, being a Crystal is better even than being an Indigo, and Indigos are really special.
How did Jenny discover she was an Indigo?
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 [sic] approached me and said, "You're an Indigo and your son is a Crystal." I immediately replied, "Yes!" and the woman smiled at me and walked away. I stood there for a moment, because I had no idea what the heck an Indigo and Crystal was, but I seemed so sure of it when I had blurted out "Yes!" After doing some of my own research on the word Indigo, I realized not only was I an early Indigo but my son was in fact a Crystal child. From that point on things in my life started to make sense. ... and at that moment I knew exactly why. I was born to not only think outside the box, but to break that box up into a million pieces. I called this day my "awakening", but really it was the day I remembered. This was the day my life and global mission became so clear. There was nothing I could do that could contain the excitement of what was to come.(Bold emphasis added.)
Autism Diva hasn't figured out when this Indigo awareness thing happened. McCarthy's son was diagnosed with epilepsy at age 2 1/2 and a few weeks after that as being autistic. She said on Oprah that after his being diagnosed as having epilepsy, her mommy instinct told her something was wrong. Well, yeah, he has epilepsy. But when she got the autism diagnosis her mommy instinct told her that was right. But she "happened to say", 'Well, I believe my son is trapped inside. I'm not settling for this.'"
Strangely, it would seem that her son got the Crystal label after the autism label since he and his mom were walking hand and hand down the street... which seems more like something a mom would do with a 3- or 4-year old rather than with a 2-year old.
So maybe after Jenny's son was diagnosed as autistic, a woman walked up to her and announced to her that Jenny was an Indigo, but not only that, her son was a Crystal. One supposes that this woman could see their "auras". Jenny then blurted out "Yes!" expressing agreement with the strange woman, without knowing what the words Crystal and Indigo meant. But not to worry she did "research" to find out. Where do you suppose she did this research? One might suppose that, Jenny McCarthy, famed for acting stupid, and being a party girl, a woman who apparently smoked through her pregnancy and then discovered health food and HEPA filters after her son was born, doesn't have a library card. Maybe she does, but she now claims is PhD in "Google" research and when her son was having seizures she lamented that her ex wouldn't ask her what she was finding on "Google."
But before we move on, back to the strange woman Jenny passed on the street, if that woman can spot a Crystal (meaning: autistic) kid, in passing, with a high accuracy rate and has that much confidence in her differential diagnosis, can we get her to go to work with Dr. David Amaral on the Autism Phenome Project? Imagine the money they'd save on skipping over that time consuming ADOS testing.
Another weird thing is that before her son had seizures, at age one at least, he had symptoms of autism. A woman who worked at a "play gym" where Jenny had taken her son to play asked Jenny if the boy had a "brain problem." Jenny responded by getting the woman fired (she said this with no sign of shame, on Oprah). So it wasn't ok for a stranger who works around children to ask if her child had a brain problem, but it was OK for a stranger to tell her that he's a Crystal. One supposes that that is because "Crystal" sounds special and "brain problem" sounds like a put down, or maybe cause one to fear one had done something to cause it.
At some point after deciding to write a book about her son being autistic, and after hooking up with the quackery-aligned, Southern California based autism organization known as TACANow, Jenny decided that being a pillar of support for her fellow Indigo Moms wasn't working out. She shut down her indigomoms.com website. It seems that in her book she has a new definition for what an Indigo is, that's a person with ADHD. And a Crystal is an autistic child (or maybe a autistic adult). Though one has to think that autistic adults are not Crytals because we don't seem to share one consciousness... you know, 'cuz if we did, like, ... why would we need the Internet to connect with each other?
This past week Jenny McCarthy hawked her book on both Oprah, and on ABC's 20/20. The 20/20 reporter introduced Jenny's story by saying that when Jenny gave birth to her son Evan, he in turn gave birth to her new career as a writer. As Jenny said on Oprah (about modeling in a bikini while worrying about her son's health,) "Mommy's gotta work it."
If you'd like to read Jenny's Crystal-less pearls of wisdom about autism without forking over the dough for her book, she's posted some of them to Oprah.com. She helpfully points out that she's not a doctor, but lists what she did with/to Evan. Including:
#4 Starting anti-fungal meds to kill Candida/fungus. Meds like Diflucan, Nystatin. Evan started to come out of autism completely after I killed CANDIDA!!First of all, what's the deal here? She says he "started to come out of autism" when she, personally, "killed CANDIDA!". But he started to come out autism "completely" meaning that he eventually became normal? "Completely"? Why is he called her "autistic son" on the cover of People magazine? Why is he still doing repetitive and stereotypical behaviors and why does he stil have problems with "abstract understanding"? One can only assume that Jenny feels deeply as if she has failed when Evan flaps because her efforts with diet, Diflucan and Nystatin haven't killed every last imaginary crazy-making yeast bug in his body.
Candida infections only become very serious if a person has no immune defenses at all, as in a person with full-blown AIDS. In that case the Candida is going through the person's whole body, the infection is systemic. But Candida albicans became the bête noire of the worried well in the 1980's, everyone who thought they had Candida infections did, because they just did, and Candida was could be named as a cause for practically any symptom a person might have.
Jenny might have known that Candidiasis is just so eighties, and that it fell from favor when people figured out that "treating" Candidiasis didn't remove their symptoms. Candida is practically a quaint relic of health-faddism, and has been replaced by Lyme disease and maybe Morgellons (both are said to cause autism) and who knows what else as a fave of hypochondriacs and their curers. Jenny might not be expected to know about fads in the 1980's, being as how she was 10 years old in 1982, and we know she was busy being a bunny and second rate actress in the 1990s.
Jenny said on Oprah that she chose to go with the GFCF diet and antifungal drugs after getting her son's blood and stool checked. It's likely that she got the Candida blood test results from one of the providers of questionable lab tests favored by quacks. Yeast (Candida) is a big topic of discussion on autism "biomed" parent forums. They are chock full of parents discussing how they diagnose "yeastiness" from the child's behavior as in, "Oh, I can tell when Johnny is yeasty, because he starts acting crazy...." "Yeastiness" can be "diagnosed" by these parents just by looking at a child's behavior. Jenny explained how she had to break off from seeing Jim Carrey for some time because her son had gone "crazy" from yeast and needed her full attention.
Interestingly, it seems that not too long ago Medicare pulled the CLIA operating certificate for Immunosciences Lab (not so affectionately known as Immunoseances). Medicare's inspection looked for validity in the tests Immunosciences offered and found it severely wanting. That one lab is said to have been the major provider of bogus Candida testing. If you go to the Immunosciences lab's website they announce via pdf, that they are no longer in business as of a couple of months ago. So one can imagine that perhaps Jenny's son was found to have "CANDIDA!" via a nonsense lab test ordered by her son's DAN! doctor. Meaning that it's possible that her son was put on prescription drugs (Nystatin and/or Diflucan) for no reason. But it seems safe to say that knowing that will not going to stop her from attributing his "coming out of autism completely" to these drugs (and diet).
Evan went from being a 2-year old (diagnosed) autistic boy (with seizures) to a 5 year old autistic boy apparently still on meds to prevent seizures, in 3 years. This is supposed to be an amazing thing. It's not. Not unless we are to believe that all autistic children stagnate at their two year old level and can never learn anything or develop skills beyond that. Jenny doesn't attribute his development to, uh, development, but to her magical mystery cures that she got by way of quack dox and quackery promoting autism websites which of course, she discovered by doing "Google research." Oh, but she's a heroine for saving her son, from... what? From being a 2-year old, low functioning, psychic with a few too many autistic traits? Jenny seems to have a hard time keeping her story straight.
On Oprah.com, Jenny takes time out from her busy schedule to spread lies about vaccines, like they contain "aborted fetal tissue." Thanks, Jenny. Thanks, Oprah. Maybe now some kids will die of vaccine preventable diseases because they trusted the vomit eating side-show girl with the high-school diploma to give them medical advice.
To compensate for her obliviousness to, and dismissiveness of, real science--she claims her son is her science. Kevin Leitch on his newly reworked blog, "Left Brain/Right Brain" discusses Evan being Jenny's science, and value of Jenny McCarthy to autism and autistics as opposed to the value of her son's being autistic to Jenny.
Apparently, Jenny feels like she was destined to have an autistic child (or maybe it's that she was destined to have a Crystal child but got stuck with one that was also autstic) because she has said she felt she was destined to vaccinate her son and cause him to become autistic. When asked if she'd like to have another child with Mr. Dumb (or did he play Dumber?), she replied that having Evan had kicked her (posterior). Meaning, presumably, that it's been a horrible, draining experience, so that she couldn't handle another child. Probably a good choice on her part. For additional intelligent discussion of the problem of Jenny McCarthy Autism Expert, Estee Klaar-Wolfond discusses a Jenny centered People magazine article where Jenny talks about spending the rest of her life on the project of curing her son, presumably with quack treatment after alternative-airhead treatment until he's 100% normal (for a Crystal) or maybe until one of them can no longer participate in the experimentation.
Figure the odds that Jenny McCarthy knows anything about how the brain works, or is even interested in how it works. Figure the odds on whether or not she can understand how it is that you can't just trust any advice that shows up in a Google search? Figure the odds that she can sit back and evaluate the flim-flammery she's been exposed to with "CANDIDA!" treatments and anti-vax nonsense. Figure the odds that she'll ever pick up a heavy-duty peer reviewed paper on how the brain functions in autism, or that she might question what her smoking during her pregnancy did to her son's health.
Our minds and hearts can trick us, or as New Scientist said:
5. Pay attention!How would Jenny explain it if someone asking her for her expert advice wrote something like:
IMAGINE you are walking down the street and a passer-by asks you for directions. As you talk to him, two workmen rudely barge between you carrying a door. Then something weird happens: in the brief moment that the passer-by is behind the door, he switches places with one of the workmen. You are left giving directions to a different person who is taller, wearing different clothes and has a different voice. Do you think you would notice?
Of course you would, right? Wrong. When researchers at Harvard University played this trick on 15 unsuspecting people, eight of them failed to spot the change.
What this demonstrates is a phenomenon called "change blindness". It happens because of a chronic shortage of a crucial mental resource: attention. You are blithely unaware of most of what is going on around you, to the point where you can fail to notice "obvious" changes in your surroundings.
"Jenny, sometimes when my son and I look at the second hand on a clock, it seems to stop. What does this mean?"
Would Jenny answer, "Oh! Girlfriend! This means you are an Indigo and your son is a Crystal! Angels have been proven to hang around Indigos and Crystals and stop time for them!"?
If someone claimed that Crystal children are "so powerful that you can even record a sentence, chop it into 50-millisecond slices, reverse every single slice and play it back - and it [will be] perfectly intelligible," to them. Would she just say, "WOW! Of course!" Or would she pause and ask if the same was true for every other hearing person? And how many others, like Oprah, would just take her just take her word for whatever Jenny's "mommy instinct" told her was correct?
More about Jenny on Oprah from the science blogger Orac. and from Qchan and Do'C on the new Left Brain Right Brain group blog, James of Autism Natural Variation and Liz at "I Speak of Dreams" blog.
Also, via the New Scientist article an excellent video about the power of the subconscious mind as shown by a patient with a newly severed corpus collosum.
P.S. Thank you to a fellow mom for a taped copy of the Oprah debacle on VHS.
Autism Diva
uncrystallized
posted by Autism Diva at 1:33 AM
82 Comments:
If you think that's bad, you should check out the discussion over at Oprah's site about it:
http://www.oprah.com/community/thread/1542?tstart=0&start=645
In case you want to know, I'm yoshiyoshi on that site. Right now there are a couple morons who seem to think fighting for Neurotypical rights, and not "curing" their children, means we're advocating for self-destructive behaviours, or that they should let their child suffer through vomiting blood, because that's a natural part of their Autism.
If anyone cares to go on the site and explain to people this isn't true, I'd appreciate it. I can't belive parents can be so ignorant. If it isn't "You're not a parent so you don't know!", it's "Neurodiversity is a movement by selfish higher-functioning Autistics, who don't want lower-functioning Autistics to get help." Wait, is it the Autistics or NTs who are "retarded" again?
One wonders if McCarthy was walking down the street when a Mercury Mom came up to her and confidently stated, "Your son is mercury poisoned and the vaccines did it." And McCarthy blissfully said "Yes!"
Somebody should try walking up to her and telling her "You were meant to be a nun."
Great post, Deeves!
Dangerous Duo: Oprah and Dr. Phil. The Dr. Phil/Frank Lawless connection sends me over the edge and now Oprah (again) gives a platform to the celebrity autism fringe.
I say we plow Oprah's website for some "balanced" exposition of the subject. Ask her to put Roy Grinker, Prometheus, Orac et al. up against the Jenny McCarthies of Hollywood.
Can any celebrity with a book, book a seat next to Oprah? Ugh.
Jenny's McAutism, millions and millions served?
Have any of the intereviewers actually read the TACA website and asked Jenny real questions?
You can't just say, "I represent TACA" and avoid questions like, "isn't chelation potentially dangerous" and "why is chelation under vaccination when there is basically no mercury in the vaccines anymore?" (especially in California, home to TACA).
But, why do that. Just send the parents on their merry way to he TACA site. It must be good, it's Jenny!
Parents who listen to McCarthy's advise should take comfort in her keen grasp of reality.
The discussion on O's message board is maddening. "Oh gee Jenny, my baby is supposed to get his MMR tomorrow. What should I do?" And if we disagree with JM, we are bitter that we don't have what she does. ick. grrr
kudos for being able to watch the taped episode, Diva. It was not an easy hour to endure.
see also comments here
http://www.youtube.com/watch?v=i91MgNJI6gA
Vojdani's lab is out of bizness? Where will all the poor folks go for the (discount) McCandless immune panel? Tragic.
I also noticed that during the interviews Jenny sometimes looked as if she was acting (badly); her lines rehearsed, her smiles, fake.
In any case, what bothers me most about her appearances (by now she's also been on 20/20, People Magazine and Good Morning America; will be later on Larry King Live) is the fact that she's declaring her son "recovered" when he's clearly still autistic, except more developed than he was 3 years ago. He's been through speech and play therapy, and probably having a fun Mom and StepDad helps the kid get motivated to learn new play skills and spontaneous language. So comparing this HFA 5 year-old with the more classically autistic 2-year-old doesn't sound miraculous to me at all.
Now, if she has a tape comparing how much the kid talked and acted before and a few weeks after the GF/CF diet and antifungal treatment (since she claims that was the reason for his improvement), then that might work as a shred of evidence. Not her "gut instinct". We know many autistic kids have spurts of language and behavioral development regardless of type of diet and therapy, so as much as one would like to believe on the efficacy of GF/CF, it's still a mistake to take Jenny on her word alone.
Yeastiness is like truthiness, eh? "I can tell when Bush is being truthy because he smirks a lot."
Nice attempt at character assassination - you disagree with the message so you attempt to shoot the messenger.
Saying that this blog is
"character assasination" is hysterical, and character assasination besides.
Jenny said in an interview when her son was 3 that she didn't mind if he google her name when he got a little older and saw all the nude photos, but she was going to try to stop him from reading what people had written about her (this was like 2 years ago).
As far as I know, the stuff Jenny doesn't want her son to read about her is all true. Pointing to true things about Jenny is not character assassination. It's showing people what it is that she is trying to hide about herself, namely the Indigo mom nonsense. If she wasn't trying to hide it then why remove her pages from the internet where she explained that her son was a Crystal.
What will her son think when he reads her pathetic book with the totally ignorant comments on vaccines in it? What will he think when he reads the chapter called, "Crazy Evan." What about "When I got the autism diagnosis, I died. I just died." On national TV, on several different national TV shows, in fact. But then, she also says when she got the diagnosis, she said, "that's right. This doctor is right." and "But I added, he's trapped in there, I'm not going to stand for this. I'm going to get him out!"
Right. Which was her real reaction, the total confident agreement with the doctor... she immediately knew he was right; the confident "I'm going to get him out!"
or the "I died inside." ?
I'd think that might be a problem for him later on. But maybe not.
"Jenny said in an interview when her son was 3 that she didn't mind if he google her name when he got a little older and saw all the nude photos, but she was going to try to stop him from reading what people had written about her"
So if you aren't attempting to discredit her as a person, what does the your above statement have to do with her views on autism?
Jenny is getting press for her views on autism that are being presented as if she had something vaguely like credibility. Jenny's story doesn't even hang together when you look at it. She's seeing a quack doctor and pushing quack notions of vaccine schedules. The people who are hosting her are not in the least concerned with whether or not Jenny is wrong. They are giving her a platform to spew a bunch of twisted falsehoods.
The GFCF diet should NOT be tried on all autistic kids and all kids with behavior issues. This is just bizarre and has not basis in fact.
If a child is getting sick after eating wheat or dairy, then fine, change the diet, but that does nothing to the autism.
Jenny seems to have used a quack lab to tell her that her son's entire body was riddled with candida yeast... this is bizarre. But we are not allowed to question such bizarre statements. We have to be nice to Jenny and "leave Jenny alone."
Jenny is not concerned about her reputation until in conflicts with her book sales, apparently, because the shocking, immoral things she has done (way beyond posing nude) are a walk in the park for her (except maybe she doesn't want her son to learn of them). I don't think there's anything in the blog that hasn't been said to her face to no effect. She's like impervious to social standards and criticism, that's her schtick.
She doesn't then get to turn around and give out advice, and she IS giving out advice. She's not against vaccines, but if she had it to do over she wouldn't vaccinate a child.
????? She's spreading lies about vaccines that are meant to terrify people away from them. This is not a game. This is not just her expressing thoughts. This is her screaming "fire" in a crowded theater by bashing vaccines. This is her saying things that autistic people take as insults and degrading. Oh well... autistic people are Hollywood stars like Jenny.
Oprah only has very standard looking people in her audience in nice clothing. She screens the less than perfect people out of her audiences. Figure the odds that she'd allow a bunch of autistic people of any type on her show or be in the audience? She's prejudiced against the less than perfect, apparently. But that's ok, she doesn't need to listen to autistic people when she has the ex Playboy bunny on there to giggle and hiccup (not to say, vomit) her way into America's heart.
Mike Stanton on the advisability of Jenny's advice.
Just caught Jenny McCarthy on The View this morning. At least the ladies there had more challenging questions for her than Oprah. Anyway, according to Jenny on the show today her son no longer has autism.
AD, Wonderful compilation of the Important things to know about ms Knowitall McCarthy, who really doesn't know Jack! (and probably dosnt list her conflicts of interest selling gobbledy gook.)
MJ, you really don't have a bright bulb if you can't see through all of JMs confusions about what reality is, in my opinion.
"Jenny is getting press for her views on autism that are being presented as if she had something vaguely like credibility."
So you are attempting to cast doubt on her credibility - hence me calling it character assassination.
"If a child is getting sick after eating wheat or dairy, then fine, change the diet, but that does nothing to the autism."
Sorry, you are just plain wrong there. The GFCF diet can and does make a difference in autistic traits in a subset of the autism population, at least from my experience.
"MJ, you really don't have a bright bulb if you can't see through all of JMs confusions about what reality is"
Ouch, you wound me. I have no doubts that JM isn't a perfect person or that she has some strange beliefs. Then again so does everyone else. Autism diva has said that she believes that putting mercury on open cuts is a good idea - how many other people would agree with that?
But there is a difference between disagreeing with what a person said and outright bashing the person because you don't like what they said. The first is a healthy discussion, the second is character assassination.
The GFCF diet can and does make a difference in autistic traits in a subset of the autism population, at least from my experience.
MJ: Your experience contradicts a small double-blind study. I'll take even the smallest double-blind study over anyone's testimonial.
I don't know how else to say it at this point. Testimonials are worse than worthless when it comes to autism.
I saw Diane Sawyer's interview with Jenny. Diane did call her on the vaccine issue. The whole segment seemed rushed through as if (one can only hope) the producers at GMA were embarrassed to have to air such a thing. They focused more on Jenny's bizarro career than on the book, thankfully.
As to character assassination, what about Evan's character? I mean, his own mother goes on national television announcing that learning that he has autism is equivalent to a death. It's a disgusting and hateful thing to say particularly about your own kid. I think Autism Diva's take on Jenny shows real restraint!
"So you are attempting to cast doubt on her credibility - hence me calling it character assassination. "
No. One can have an excellent character and still have no credibility.
Talking outside of one's expertise is a good example.
"Your experience contradicts a small double-blind study. I'll take even the smallest double-blind study over anyone's testimonial."
Joseph, are you referring to this study?
The gluten-free, casein-free diet in autism: results of a preliminary double blind clinical trial.
J Autism Dev Disord. 2006 Apr;36(3):413-20.
If so, your rebuttal is meaningless. The sample size it too small, the time period is too short, it does not appear that the researchers made any attempt to screen for the children who would be good candidates for the diet, and last but not least the authors conclude that "Group data indicated no statistically significant findings".
I am not giving a testimonial, I am stating my opinion. I find that the GFCF diet works for my children so it doesn't really matter to me one way or the other if you believe me or not.
"As to character assassination, what about Evan's character? I mean, his own mother goes on national television announcing that learning that he has autism is equivalent to a death. It's a disgusting and hateful thing to say particularly about your own kid"
I'm sorry, are you saying that we should celebrate that our children have a life altering condition that will put them at a disadvantage to their peers and make them worker harder to achieve the same accomplishments?
I think she was expressing what many parents feel upon hearing that their child is autistic. It is not "disgusting" or "hateful". If you are a good parent you love and accept your child for who they are. Your child may be autistic but autism is not your child.
"No. One can have an excellent character and still have no credibility."
Wow, what a non sequitur. So this isn't "an intentional attempt to influence the portrayal or reputation of a particular person ... in such a way as to cause others to develop an extremely negative, unethical or unappealing perception of him or her." (from Wikipedia) because you are saying that she has an excellent character it just her credibility that you have issues with?
Thank you, thank you, thank you for this post. I was starting to think I was going to explode. Jenny and her "autism whisperer" boyfriend are making me sick.
Wow what an interesting post, and comments!
The sample size it too small, the time period is too short,
And I didn't realize that? Again, even the smallest, shortest and most poorly designed double-blind study is better than someone's ad-hoc observation that "GFCF helps some kids".
That's what we have at this point, and my conclusion that GFCF does not work for autism is the most appropriate conclusion given available evidence. When there's more evidence, let's re-evaluate.
Furthermore, there is no compelling reason for me to take your experiences more seriously than I would take Victoria Beck's or Michael Menkin's or those of the MonaVie mom's or those of someone doing foot detox. There just isn't.
Hello friends -
"And I didn't realize that? Again, even the smallest, shortest and most poorly designed double-blind study is better than someone's ad-hoc observation that "GFCF helps some kids".
Elder noticed the exact same thing. This is exactly what the biomedical community has been saying all along; it doesn't work for everyone, but it does for for some.
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."
There is exactly one way to know if dietary changes will help your child, hop in and give it a trial.
The funny thing is how quickly a poorly defined study can be defended if it suits a particular agenda.
LOL!
- pD
There is exactly one way to know if dietary changes will help your child, hop in and give it a trial.
Oh, it didn't work.
Did you remove soy...
OK, I tried that, it didn't work.
Did you remove artificial colors?
OK I tried that, it didn't work.
Did you try the specific carbohydrate diet.
OK, I tried that, it didn't work
Did you try foot creams?
OK, I tried that, it didn't work.
Did you try chelation?
If it sounds like a stretch, it is. If it sounds like so unreasonably that it doesn't happen, read the table of contents to McCandless' book.
As to defending a less than perfect study, special diets have been around for, what, 30 years? More? Where is the actual study from ARI or someone else on them?
Are you kidding me? What is WRONG with you people? Do NONE of you have autistic kids? My husband and I have 2 boys, 5 and 8 and have the same story as Jenny McCarthy...only we haven't tried everything yet. Until you watch your children smear and EAT their feces and until you are up night after night after night for 5 (FIVE!!!) years with seizures and until you hear your little boy scream in gut pain, and until you watch your child slip away from you THE DAY after your 18 month vaccinations...you have NO ROOM to comment! What the hell is the matter with you all? Our lives are being destroyed by this disease that has blatently overtaken our children. I watched my youngest boy have a high fever the day of his vaccinations and then shortly thereafter lose his eye contact, stop saying any words like MaMa, start flapping his hands and scream incessantly...not to mention the runny ammonia smelling diapers that were yellow and nutty until the Gluten Free/ dairy free diet went in place! We are all scrambling here for answers while the window of opportunity is here for us! Why discourage Jenny McCarthy from telling her story? I am on bended knees in prayer daily for these boys and for an avenue to tread which I have not tread already! I have had so many freaks tell me my children were crystal children or that I needed to meditate or that I needed to practice eastern ways...bullcrap! I know God is leading and I believe there are answers out there! Why is it that the amish population (who are unvaccinated) have no incidences of autism? Try, just try and step into the shoes of desperate, tired, but focused parents who are looking for answers from a medical society that destroyed our kids! I would take measles, mumps, chicken poks any day!!!
First of all 2boyswithautism, watch your language or Autism Diva may be forced to repost your comments minus the offensive language.
Second of all there are at least 4 parents here in the comment section with "low functioning" autistic kids, one of them with two of such, and one parent of a "middle functioning" ASD/PDD,nos adult (Autism Diva's kid), and CASDOK is the mom of a Asperger's/Autistic teen if Autism Diva recalls... and violet-yoshi is an autistic adult...
So you can just cool it with the "you have no idea what it is to be the parent of and autistic kid..." bit.
My kid lives with me, I'm 48, the kid is 27ish.
Autism Diva and some of the other commenters have had very draining and frightening, etc, experiences with our kids, it's just that we can't imagine not having these kids and we couldn't dream of going out and laying out their very worst moments as if they were typical.
Autism Diva's greatest terrifying moments of her life have been when her kid came close to dying. Life without this autistic kid would be ...not meaningless... but much more empty and sad.
Autism Diva sees both of her kids (the other adult kid lives independently) as absolute blessings and would be crushed to bits if either of them died. They are treasures beyond belief.
The Amish both vaccinate their kids and also have autism, so the "Amish don't vaccinate and don't have autism" bunk is worthless and it's a pity someone filled your head with it.
Autism Diva is glad that Jenny's friends with the Crystal message didn't get anywhere with you.
As for your antivax rant, sorry, seen it lots of times, seen it turn out to be wrong too many times. Moms misremember sometimes and lie sometimes.
You may be telling the absolute facts, but having see the "absolute facts" delivered with rage, and or passion, as you are doing, that turn out to be false... it just doesn't cut it any more.
Vaccines don't cause autism. If your kid had a bad vaccine reaction then go to the vaccine court and get compensated, by all means. As for now there is absolutely no reason on earth to believe any combination of vaccines made any kid on planet earth autistic of any type.
You're kids aren't destroyed. They are children with problems and learning challenges and communication difficulties, maybe huge ones. And neither is my kid destroyed, if you can't talk about autistic kids with more respect then expect your comments to be deleted without explanation in the future.
Yoshi,
Sorry there is no way to combat those kooks on Oprah's site. You will never convince them, even if you show them 1000 studies showing that vaccines have nothing to do with anything (except that the lack of vaccines is leading to outbreaks of measles, whooping cough, etc.) Let us see how long it will take before some children die of measles before the tide shifts again. I am so happy to find autistics posting their feelings and experiences. I have a 14 year old daughter with PDD/NOS and she is very clear that she would not be normal for any amount of money. She will stay the way she is. Besides I happen to think she is more "normal" than many of the ranters who are posting on this and other sites.
Ignore the kooks and know that you are slowly starting to make it clear that autism isn't death, and that you have a right to be autistic.
Hi Matt -
"Oh, it didn't work.
Did you remove soy...
...."
None of this changes the fact that Elder reports exactly what thousands of parents who have tried dietary interventions report; some children respond with behavioral and language gains. Why does this bother you?
- pD
Hi AD, I'm the I Speak of DreamsLiz.
AAARGH! The crystals, they burn. I sort of stopped paying attention to the indigo and crystal people, otherwise I would have held JmC up to more ridicule. Delusional Parenting. New Age Profiteers. Indigo Children: Child Protection Manifesto.
Really Autism Diva? You are going to put the kibosh on my posting because I used the word ‘hell?’ Really? Out of the passion of that posting, that is the first thing you picked up? Not the fact that we are a family in major chaos trying to keep our sanity so that we can stay alive long enough to raise our children to be somewhat functional? I pray every day that they will never have to go into an institution somewhere after we die. I wake up nightly at 11pm, 1am, 3am, 5am and then 7am to a child seizing! I have been doing this for 5 years. How long can a person live without sleep? Try going back to bed after that! So we have been to one of the so called best pediatric neurologists in the world and have tried his method...anti-convulsants, one by one by one until our little boy was having even more and more seizures! We have charted this and believe it or not have tried 10 different FDA approved drugs to no avail! We have decreased the amount of seizures after we started the GF/CF diet, but we have in no way stopped the seizures.
Could you be exhibiting anger because answers were not found out for your child? How can you make a blanket statement like “Vaccines don't cause autism.” This is just as narrow-minded as saying vaccines cause autism. You don’t know what causes autism and for some reason you can’t relate to the success stories. I have witnessed personally 3 different cases of autism where reversal has taken place. Coincidence? Really? All 3 implemented the GF/CF diet. All 3 implemented intense ABA therapy and all 3 stuck to a regimen of vitamins. Their children are in regular education. They were smearing feces, they were flapping hands, they were rocking, they were impulsive. Now, they are functional! In all of these cases, they were very adamant about diet and never missed a beat. Just because I want to see my children “come out” of autism, doesn’t mean I don’t love them for who they are right now. I am just worried about their futures, worried that others won’t love them the way we love them, worried that they will be forgotten after we die. Therefore, my husband and I are searching for answers and because we don’t have much research on autism, we look to where the successes are and talk to parents everywhere. You seem like you have given up hope? You seem cynical and hard-hearted. Miracles happen and doors open.
Concerning the Amish and vaccinations, you again choose to not believe the various studies out there, but there are correlations between those in the Amish population who have had vaccinations and autism. See http://aboutautism.blogspot.com/2005/05/age-of-autism-mercury-and-amish.html
I am so very sorry that you have had some frightening experiences with your children; that seems very unfair. I don’t blame you for being cautious with any doctor or organization that makes huge promises. But I don’t think it is moral to accept this illness. My kids were destroyed (from the way I knew them before). I watched them regress and be sucked into a vacuum I could not pull them out of. My husband and I will never stop trying to help them in whatever capacity we can. Our number one goal is to make sure they are happy and not hurting, but from there we will not stop to find help for them. Not every kid is the same or every case history.
Thank you for taking the time to share your views. I appreciate your take on this situation although I obviously do not agree with everything you have said.
Kind regards,
2boyswithautism
This post has been removed by a blog administrator.
Passionless Drone,
This is a no quack zone.
The web is inundated with bad websites giving bad advice to parents. This is one spot where it's not going to happen.
The paper about PPA you are referring to took PPA and injected it into the brain of adult rats to create seizures and repetitive behaviors and whatever in the rats.
The point was that they wanted to make a rat model of autism. The point wasn't that by changing the diet of an autistic pup (or child) you could reverse the wiring already done. Damaging an adult rats brain is not making it "autistic" since autism is a developmental disorder. The PPA adult rat study is garbage as far as helping parents. They hint that PPA excess in utero could make the child autistic. Great, so moms can freak about having done something to raise PPA levels while pregnant, that rewired their kid's brain. And this on someone's vague hypothesis?
Michelle Dawson comments on it here
Again, on this blog, do not post links or URL's to websites that promote quack cures that can trap people into thinking they need to do these things. If a mom thinks diet can help she can "google" to her heart's content.
here
Trying again to link to Michelle's comment on the rat study.
2boyswithautism,
Quoting Autism Diva's earlier comment:
"The Amish both vaccinate their kids and also have autism, so the "Amish don't vaccinate and don't have autism" bunk is worthless and it's a pity someone filled your head with it."
You directed us to a garbage piece by a total idiot, Dan Olmsted.
One more time, the Amish both vaccinate and have autistic kids.
One of the communities has a developmental center nearby to serve the Amish. They don't all vaccinate, but many do. They don't all have autistic kids, but some do.
JB Handley's phone survey found autistic kids who were totally un-vaccinated. He found them at a rate, nearly 4 percent, which is far above the expected rate for the average US resident (1 in 150)
look here
and here.
Okay, I don't watch Oprah, and didn't hear about this today. As soon as I did, (in a "Jenny McCarthy is so awesome and right about autism" way) I had to come here to see what you thought and to get more info. :P Because I knew I couldn't be the only one thinking she was a total idiot.
Concerning the Amish and vaccinations, you again choose to not believe the various studies out there, but there are correlations between those in the Amish population who have had vaccinations and autism. See http://aboutautism.blogspot.com/2005/05/age-of-autism-mercury-and-amish.html
There are no epidemiological studies of autism among the Amish. And apparently they do vaccinate. Olmstead went and asked some guy if he had seen autistic kids there. That's not a "study".
Hi autismdiva -
"This is a no quack zone.
The web is inundated with bad websites giving bad advice to parents. This is one spot where it's not going to happen.
The point wasn't that by changing the diet of an autistic pup (or child) you could reverse the wiring already done."
LOL! LOL!
It is exceedingly simple to prove that dietary changes can be used to reduce seizures.
According to the epilepsy for children organization in the UK, an extremely low carbohydrate diet is effective at reducing siezures. Read about it here. Are you telling me these people are quacks?
Of course, the use of a low carbohydrate, and high fat intake diet, the ketogenic diet, has been shown to be effective at treating siezures for a long time. Here are some pubmed links on it.
Study
Pediatrics Study
"Of the original 150 patient cohort, 20 (13%) were seizure-free and an additional 21 (14%) had a 90% to 99% decrease in their seizures. Twenty-nine were free of medications, and 28 were on only 1 medication; 15 remained on the diet. There were no known cardiac complications. CONCLUSION: Three to 6 years after initiation, the ketogenic diet had proven to be effective in the control of difficult-to-control seizures in children. The diet often allows decrease or discontinuation of medication. "
There are, many, many more.
Here is a brand new one coming out in Nature, for which the abstract is not yet available on pubmed. This seems to indicate the low carbohydrate component of the diet is making a difference.
Nature Study
Are the authors of the Pediatrics study quacks? Are you putting Nature on a quackwatch? Perhaps if the scientists involved with these studies understood that someone with a degree in Psychology and a blogger.com account had determined that 'wiring' could not be undone by diet, they would retract the papers.
2boyswithautism is only trying to keep her children from having siezures, apparently you think that dietary modifications are an inappropriate way to handle this. Why?
If you decide not to censor me, I'll post something in regards to pripionic acid later.
- pD
The ketogenic diet is not quackery, when it comes to seizures. The evidence on it is valid. It does not consist solely of anecdotes, testimonials, case reports and non-controlled studies.
That doesn't mean that it would be indicated in autism, though. And you definitely cannot extrapolate from that and say that dietary changes, in general, must therefore work.
Hi Joseph -
"That doesn't mean that it would be indicated in autism, though. And you definitely cannot extrapolate from that and say that dietary changes, in general, must therefore work."
Who has made such an extrapolation? What is to keep me from implying that you have extrapolated that dietary interventions will never work?
If autismdiva hadn't censored me, you'd see that I had recommended investigating a very low carbohydrate diet (well, very low in complex carbohydrates, anyways), for 2boyswithautism, who is experiencing quite a lot of problems with siezures. I did not say that it must work, only that others had reported decreased seizures while on it, and a great many others have reported behavioral gains while on it. (Begin 'plura of annectode.....' )
Whats more, there is one study on the ketogenic diet in autism, which found improved CARS scores for children on the diet. It was not blinded, and identified as preliminary by the authors.
Ketogenic diet and autism
At the very least, we can say that there is some evidence that this might be a considered as a possible treatment for autism.
In my 'banned' post, I mentioned, the Specific Carbohydrate Diet, or SCD.
Of course, if you were only going to listen to testimonials from people who have been on SCD, what they would tell you is that the say their children have their first formed bowel movements of their entire lives after a week on SCD. [this is exactly what happened to my son, but 'the plura of annectode....']
But, if we search, just a little bit we also have good evidence that austic children have abnomrally large populations of exotic bacteria that feed on carbohydrates.
We have evidence that strains of Clostridium in autistics are greatly increased when compared to controls. Study.
It is equally well understood that other types of Clostridium infections can cause severe gastro intestinal issues.
Here is where it gets good. One of the bacteria discovered in the study referenced above, bolteae, was only very recently identified. The article clearly states that this bacteria uses carbohydrates as an energy source.
Go figure.
Given this, is it quackery to make the logical jump that a reduction in carbohydrate intake will lead to a reduction in Clostridium populations?
Take care!
- pD
Autism Diva, could you please clear this posting of the curbies. Why can't they just go back to their own boards, and discuss their experimentation on the neurodiverse there?
Passionless Drone,
No more.
Autism Diva will leave your posts so that people can see what you are advocating. But no more.
Not one hint at any recommendations for treating autism. Such things are all over the web and they are not welcome here as it degrades very quickly into people trading dosage recommendations and other dangerous "Look at me! I can be a doctor, too!!" self aggrandizing garbage.
You can find millions of pages of quackery and alt med out there. Don't dump it here.
People need to take qualified advice from qualified people and if "something seems to work for one" person, sometimes the thing to do is NOT to advise others to try it, especially when all you know about them is something they wrote on the web.
Sorry, Yoshi... the garbage really is getting thick here.
The discussions in the comments were as interesting as your post.
Thank you, Autism Diva
*sigh* It's nice to know my child is a feeding ground for "large populations of exotic bacteria that feed on carbohydrates."
Why do I hear, "I'm not a doctor. But I do pretend to be one on the Internet" when I'm reading this?
This is dangerous stuff. Very dangerous.
Thanks, Diva, for putting a stop to that.
Gonzo, there seems to be a huge draw to the idea of giving out amateur medical advice. It's a big draw for megalomaniacs. It really gets out of hand when people encourage others NOT to take their kids to straight doctors when the kid is vomiting or has a high fever because that's probably a good sign that the child is going to become normal (a healing crisis). And encouraging parents not to vaccinate their kids.
If a doctor recommended a parent to ignore vomiting or a fever or not to vaccinate, the doctor would be legally liable. Who will pay, emotionally or otherwise for giving advice on the internet that turns deadly.
NAET is a really bizarro treatment (started out as an allergy treatment, now they treat "allergic autism"). They could, conceivably try to convince a person who has been diagnosed with a deadly allergy to peanuts to go ahead and try a peanut because now they've been "treated" with the glories of NAET which "cures" allergies.
People don't know what could be the fall-out of a seemingly innocuous bit of advice.
This topic never ceases to amaze me. I have had friends go on and on about the indigo, crystal, vitamins, gluten free, noni juice and on and on and on. I get so sick of it. I have had to cut some friends out of my life for their ongoing blaming looks and endless suggestions that have no basis in reality. We tried quite a few alternative treatments and I regret many of them.
Hi Gonzo -
"sigh* It's nice to know my child is a feeding ground for "large populations of exotic bacteria that feed on carbohydrates."
Why do I hear, "I'm not a doctor. But I do pretend to be one on the Internet" when I'm reading this?"
All I have done is report the findings of several scientists. If you would prefer to be ignorant of what science can tell us about the physiology of autism, it is your choice.
Autism Diva has not put a stop to the fact that gut flora populations are very different in autistics and those without such a diagnosis. Nor has she put a stop to the fact that studies have shown that powerful antibiotics can cause autistic behavior to abate. All she has done is put a stop to you hearing about it.
- pD
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All she has done is put a stop to you hearing about it.
Judging from everything you posted earlier, I think the Diva is actually doing a valuable service. And I thank her for it.
Passionless drone,
You seem to be quite clueless as to the non-significance of the PPA rat study. There's no significance there to autistic people.
You have made yourself unwelcome here. People who want to toy with dietary cures for autism have a whole web to get their heads filled with nonsense.
Autism Diva is putting the blog on moderation.
Folks feel free to comment if you wish. Comments containing quackery leaning links or otherwise senseless recommendations will not be posted.
:-)
I do not have a child with autism, but am a student doing a research project on the Cedillo case. I stumbled on your blog, and find it refreshing and informative.
I, like most of your posters, nearly fell over when JM presented herself on Oprah as an expert on autism, just because she had googled it. (and what was with that Fraulein Maria outfit, BTW?) Anyone can become an "expert" by googling, but that doesn't mean they have the scientific research to back it up. I'm a skeptic and would love to see a connection between vaccines and autism, but have found no scientific evidence by any legitmate studies to convince me. The truth is out there, Autism Diva, but Jenny McCarthy ain't it. Keep up the good work.
As a big sister to a little brother with autism, all I can say about this stuff is "Whaaa??"
I am not ever going to deny that living with my brother is difficult. But he's a lovely boy, and as my mother says, "He's so much more polite and kind than other kids his age!"
Austism Diva, you rock.
Like another poster, I came here for your take, and I am also glad it's not just me going, "WTF? Cured?"
I can always count on your research.
I want to remind anyone crusing by that the Oprah who let Jenny hold down her couch is the same Oprah who promoted James Frey's "A Million Little Pieces" and continued to defend it even after it was proven with public documents and interviews that Frey had made the whole damn thing up.
McCarthy's story is a work of fiction, and I heartily resent the attention she is getting for it.
"She's not a doctor she just plays one on tv." As if the entire autism thing were not exhausting enough, now we have McAutism everywhere.. I feel like we have slid back the science by years, and I once again have people asking me if my child was poisoned by his vaccines. (By batch number there was no thimerosal in any of his vaccines, so if that's how you "catch" it..he is truly a miracle!)
Thanks again for being a place of sanity Autism Diva. My husband had to turn off Larry King because I was yelling so loudly and often.
Thanks for all of your comments. :-)
Autism Diva is taking a break from blogging for a bit.
Bravo! Great post. My son is not crystallized, indigone, or yeasty. He's Autistic, and he's Awesome.
Sharon,
Autism Diva accidently deleted your comment instead of approving it.
this was Sharon's very kind comment:
"Autism Diva,
You have earned your moniker many times over. I love reading your entries. Please keep up the top work!"
Thanks again, Sharon. :-)
Even more to p**s me off:
http://www.ecologycenter.org/terrain/article.php?id=13598
Who PAYS you? Talk about healthy skepticism... no one on the planet could post as much original content as you without some fairly strong support. Someone must pay you to write this stuff or supply it for you to post. No WAY are you independent. Seriously, do any of your readers ever think of THAT?
twinx2,
Who pays YOU???? Who pays you to attack someone you know nothing about????
What in the world gives you the unmitigated gall to ask such an off the wall, ridiculous and rude question?
Autism Diva blog is the result of the fact that Autism Diva went looking for certain kinds of information and found it hard to access or not there at all on the web. So, Autism Diva created the stuff that she would rather someone else have already created.
If you don't know that autistic adults (and children) have all-consuming interests, then you know nothing about autism AT ALL.
Now, mind your manners or future comments from your (rude) self won't be posted.
And in case Autism Diva hasn't made it clear, she has made not one penny from any of her writing, ever, ever, ever. Not one bit of consideration has been given in trade for anything written here. If you pay attention you will see there are a few bitter comments about the nastiness of Big Pharma, though that is not the main focus of the blog.
Read the posts here you might ACTUALLY learn something.
Aut Disce. Aut Discede.
I have an awesome little boy who has autism. He is 7 years old and was diagnosed at 2 years old.
I read "louder than words" last week and was having a huge guilt trip about not having my son on a diet etc.
I was beating myself up thinking that I was keeping him from being "recovered".
What's wrong with letting my son develop on his terms, in his own time?
What's wrong with loving him the way he is?
Am I messing him up forever by accepting him no matter what?
I wish I'd get payed for blogging. Where do I sign up? What are they paying for blog post these days?
mccarthy claims that once you treat with nystatin, you have to follow up with a cfgf diet or the candida comes back...you know, i've always had an allergic reaction to her, so i cannot bring myself to watch the larry king (i tried!) or oprah kibbitzs, but does she attempt to explain the mechanics of this recurrence, since the supposed anitbiotic/vaccine trigger is no longer a factor? she didn't bother to back it up in her q&a with someone named "foxy" on a site i saw.
Dear Diva:
Very off-topic, but I saw an interesting film today. I had recorded "49 Up" on pbs POV, and finally watched it today. I have never watched any of the earlier films in the series, so it was totally new to me.
One of the people, Nick, is an engineer and professor. He makes a joke during his interview, "How can you tell that an engineer is an extrovert? He looks at your shoes while he's talking to you." He then comments that he had heard that many/most mathematicians and engineers are borderline autistic, and he wouldn't be surprised if he were. His wife makes some interesting comments about him, too.
Anyway, just a change from the anger and acrimony of late. I'm sorry you're having to moderate comments.
Take care,
Persephone
I didn't see the Oprah show, but I have heard about it from everyone who did and they're all trying to give me advice about how to "treat" my son. I'm considering a gluten-free diet now just to get people off my back. This was a very lively discussion, obviously there are a lot of people searching for answers. Do you have any links to the various studies about gf/cf diets and the results? I'd like to read up on it so I can explain it to people. - Thanks for your site.
Hi dina,
so far there isn't any good evidence that putting an autistic child will make any change in their brain, as in changing the autism itself. Celiac disease and lactose intolerance are not unique to autism, and there must be a few kids who are autistic and also have celiac and lactose intolerance or a food allergy, because there's no reason to think that autistic kids could NOT have those problems.
What seems to be the case is that the digestive problems in autism lean toward constipation and possibly irritable bowel as caused by the extra stress that most autistic kids are under from babyhood on.
If parents want to try the GFCF diet there should be no harm, so long as they understand that for some families it's hideously stressful to wipe out all exposure to milk and wheat/rye/oats. It also can be very expensive. For some people it's really not an option. It's also harder to keep the kids well fed since a major source of vitamin E (whole wheat) and calcium and vitamin D (milk) is now gone. Which is not to say that all kids on the GFCF diet are malnourished, but it is possible for the GFCF kids to have really lousy diets because autistic kids are so picky there may be very few foods that they are willing to eat once you take away regular macaroni and cheese or sandwiches on wheat bread.
A few parents have gone utterly psychotic over the GFCF diet or one of the other diets. One mom claimed that her child couldn't be in the same room with wallpaper if it was attached with wheat paste! And some will tell you that their child goes totally nuts on one crumb of something containing a soy product, or wheat or whatever.
There have been some studies none of them show a big change with the GFCF diet and the studies weren't designed very well.
There's a great study out of University of Rochester that should be completed soon. It's a double blind study of the effect of gluten and casein on autistic kids. The kids were all to go GFCF at home and get snacks at school containing either gluten/casein or not. The teachers are blind to what is in the snack packages, the kids are blind to the ingredients and the parents aren't even around when the kid is eating the snack.
There was a study recently that found no difference in the urinary peptides of autistic kids on the GFCF diet or on a regular diet.
This is a similar study
.
Another one here.
Keep in mind that one thing that con-artist quacks do is give the patient an impossibly difficult to follow regimen so that if it fails the quack can say, "Well, of course it failed, you didn't follow it to the letter!!" The GFCF might give desperate parents something to do, when the feel like there's nothing they can do to help their child. Mom and dad are occupied mentally with "biomed" and it passes the time while junior develops and learns and grows. Of course, the parents give the credit to biomed even where it has done nothing, but time and the child's efforts have done the "trick".
If a child really has celiac or lactose intolerance he probably feels awful and might act "more autistic". fix the diet and the kid might act "less autistic." Autism Diva thinks this is what accounts for some of the diet's success stories.
Autism Diva,
Thank you so much for posting what you did about Jenny I thought I was the only one thinking what you wrote. I accidentally found your blog doing a Google search for autism and homeschooling autistic kids. I have a 5 year old daughter who has PDD-NOS and mild MR. We have done a little with her diet change and did not get any results so we stopped it. I did vaccinate her but we have several people in our family who have developmental delays so we believe that Autism is at least in some part genetic.
I will fav place your blog and check back.
What absolultely amazed me about Jenny McCarthy is the sadness I feel knowing she believes her nonsense. As the parent of two children on the spectrum, I am constantly amazed at the lack of education the people who hawk their cures for an incurable condition and the audacity they have trying to push them on us.
When people truly understand that Autism is an incurable, lifelong condition and that not everyone is a multimillionaire and can afford 40 hour a week ABA therapy, only then will be make any headway. We need good doctors and pediatricians who can detect all childhood conditions and refer them to qualified people to help families get on with their lives.
Miss you, Diva. Hope you're well.
Michele,
I agree with you, I would add that we need our schools to be more informed about autism spectrium. We need them to be more supportive to each child's needs and to work with us instead of deciding what they wnat to do with our children and expecting us parets to blindly going along with whatever they want. I am having big probalems with the special ed at my child's school.
Missing the Diva myself...
Hope all is well
Hello all. Autism Diva is taking an extended break from blogging. She is thinking about condensing the best of the AD blogs into an easier to navigate website,... not sure about that though.
She is absolutely not writing a book. :-)
Thank you for saying that you miss the regular blogging, but Autism Diva hit a burn-out and needs a break.
Please check the hub blogs at
autism-hub.co.uk
for other interesting blogging about pseudoscience and the respectful treatment of autistic people.
Autism Diva sometimes comments on those blogs as "Ms. Clark."
Dear Diva,
I hope this finds you rested and recovered. We all hope your holidays (whatever they were) were joyous and delightful.
Here's to a wonderful 2008!
Persephone
Hi, Dearest Diva,
Someone backing up my dearest opinion:
http://cosmos.bcst.yahoo.com/ver/251.6/popup/index.php?cl=6066495
Hope it comes through. ABC News Nightline video on girls with autism not being properly diagnosed because of the focus on boys and because of the differences between boys and girls.
If you get this soon, it's linked under the ABC New site, through Nightline.
I hope you are well and rested.
Take care.
AD--
I've missed you. As an Aspie mom of an Aspie kid, I have trouble seeing past all the jargon and emotion and manipulation. I come here for that "aaaaaahhhh" sense of relief, and feel stronger dealing with all the well meaning souls that think my boy just needs vitamins. Expensive ones. I hope you'll be back. Never mind the haters.
Thank you, Kathryn. Autism Diva isn't blogging as "Autism Diva" any more... but is trying out blogging as "Ms. Clark" on the grey matter/white matter blog... as of about an hour ago.
http://gmwm.autistics.org/?p=147
Blogging as Autism Diva got to be too stressful, unfortunately.
"Yeastiness" can be "diagnosed" by these parents just by looking at a child's behavior."
How ironic, that's exactly how autism in diagnosed!
I really admire you for taking a stance against "quackery." So many parents are so desperate for answers and solutions that they will try anything. I find that I am often pressured to try what I consider "quack" science to "cure" my son. Outsiders often perceive autism as a terminal illness instead of a long and patient road to understanding.
My boyfriend has Asperger's. He's changed a lot since we first started dating, and hardly anyone would notice that he isn't "normal" now, unless they got him on a very bad day. I'm always interested in what is going on in the world of people dealing with autism spectrum disorders, at first because it helped me to understand him better, and now because I wonder what sorts of things I may have to experience if we ever have children together.
Thanks for posting intelligent posts like this one! Autism is a developmental disorder. Just because a child is further along in their development doesn't mean that they are no longer autistic. I'm very happy for everyone who has used the GFCF diet and found that it helped their children become more functional, but I wouldn't call any of those children "cured" any more than I would my now incredibly personable, amiable, successful boyfriend. I've heard from his own mouth that it's not any lessening of the syndrome itself or any "cure," it's learned tactics for dealing with social interaction and becoming more "functional".
My mommy instinct tells me that Jenny McCarthy is full of sh*t.
But dont take it from me. Heres a link to the you tube vid that my talented, gorgeous, excessively long haired, naughty, straight A, OCD, brilliant, *insert as many superlatives as you like here* son Jake posted today.
http://au.youtube.com/watch?v=KTwP1XWKUsY&feature=user
Lets hope that Evan grows up and tells her she's a meathead. And that she damaged his spinal cord by hanging crystals round his neck when he was growing up.
Cheers
Samantha (mother of six kids, one with PDDNOS, one with Aspergers, four NT, three with bad attitudes, one blonde, one red headed, four brunette and all with the same dad. Reckon they're just INDIVIDUALS?!)
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