We understand that in the introduction to Jenny McCarthy’s new book on autism, you describe it thusly: “Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one..”
As parents of autistic children we would like you to know that we totally reject your characterization of our children and consider the implication of their existence as soulless as dehumanizing and destructive to their development. These are children who are already more likely than their non-autistic peers to be bullied and ostracized. We feel that describing them as soulless will only add to the stigma surrounding autism and the negative perceptions the general public have of autism and autistic people.
We believe that one of the most important things we can do as parents is to raise our children with a sense of their intrinsic value. We believe that it is right to try and plant the seeds of confidence in their young minds. The fact that they are autistic makes this process even more important as they will face characterizations and judgments throughout their lives. We do not believe that describing them as soulless will help in this respect. We cannot help but think in fact that it would be impossible to feel anything other than hurt and insulted by this description.
Further Dr. Kartzinel, we do not accept that our lives as parents of our autistic children are ones that have had the marrow of life relentlessly (or otherwise) sucked out of them. On the contrary, as several studies have shown, many parents of autistic children – and those with other disabilities – come to terms with their new lives. If we may quote from King et al (2006): “The themes indicated that raising a child with a disability can be a life-changing experience that spurs families to examine their belief systems. Parents can come to gain a sense of coherence and control through changes in their world views, values and priorities that involve different ways of thinking about their child, their parenting role, and the role of the family. Although parents may grapple with lost dreams, over time positive adaptations can occur in the form of changed world views concerning life and disability, and an appreciation of the positive contributions made by children to family members and society as a whole. Parents’ experiences indicate the importance of hope and of seeing possibilities that lie ahead.”
And from Bayat (2007): “specific resilience processes, such as: making positive meaning of disability, mobilization of resources, and becoming united and closer as a family; finding greater appreciation of life in general, and other people in specific; and gaining spiritual strength. “ It then concluded that “a considerable number of families of children with autism display factors of resilience—reporting having become stronger as a result of disability in the family.”
And in fact Bristol (1987) found poor adaptation in families of autistic children: “was predicted by other family stresses, unwarranted maternal self-blame for the handicap, and maternal definition of the handicap as a family catastrophe.”
As these words have been heard Dr. Kartzinel, you may have wondered who the children are in the images that accompany these words.
These are our children Dr. Kartzinel. As I hope you can see, they are not soulless. They range in medical diagnosis from severe low functioning autism with retardation to high functioning autism but they all share a common set of characteristics.
They have enriched our lives Dr. Kartzinel. They have not sucked the marrow from them. And they are not soulless Dr. Kartzinel. They are children. We think they are beautiful children undeserving of such a brutal, harsh, inaccurate description. I hope you can hear us Dr. Kartzinel. I hope you listened.
You can see where Dr. Kartzinel was leaving a space for the family not to have the life sucked out of it. All they have to do is make an appointment with him, they way Jenny did. Anything less would be to leave the child as a some kind of soul-less zombie pod person. It's a kind of emotional blackmail that Kartzinel, with the help of Jenny McCarthy are foisting upon an audience consisting of some people who don't know any better, and who will believe Dr. Kartzinel's version of autism. Why care about helping people who supposed to be "soul-less"? Why advocate for their inclusion in society and for getting proper education, and why pay for research that is meant to improve their lives? Surely these soulless automata are insensate and don't know good treatment from bad? Why consider their need for shelter and employment, education, recreation and medical care?
This is in fact what many autistic people face now, the reality that precious few people have ever considered what they need for shelter, employment, education, recreation and medical care... just for starters. Some autistic adults are are homeless and hungry, others are in bad housing situations and not getting the basics of what they need and they are certainly among the least able to advocate for themselves in any vaguely social manner. Dr. Kartizel you and your kind make our lives as autistic people and parents of autistic people that much harder.
Please make any comments you'd like to make at Kevin's (group) blog, Left Brain/Right Brain.
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.
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.
...
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.
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.
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!
...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.
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.
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!
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.
How would Jenny explain it if someone asking her for her expert advice wrote something like: "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?
The following is a guest blog contributed by a gracious anonymous reader who wanted to see a summary of the Cedillo hearing coverage. There were 2,916 pages of transcript, and something like 50+ hours of audio recording. Autism Diva had hit a sort of Autism Omnibus crash and burnout after reviewing that testimony (listening to Ms. Chin-Caplan, lawyer for the Cedillos, was particularly excruciating toward the end of the hearing, parts of Autism Diva's primary auditory cortex are still recovering). Autism Diva didn't have the desire to try to tie it all up in one post properly. So, here is gift from a less legality and measles morbidity and mortality beleaguered guest blogger. A brief summary of the Cedillo hearing:
It’s been nearly three months since the first part of the Autism Omnibus trial. Autism Diva did an amazing job (starting here) summarizing the day-by-day happenings. I thought it might be a good time to look back and summarize in one place what happened. Sort of the “Cliff’s Notes” version. (links are to Autism Diva’s blog—she is the gracious host after all. For a different take on the trial, check the a-champ blog).
Most cases of vaccine injury are handled according to a "table”. This lists known adverse reactions and makes it straightforward to demonstrate that an injury could have been caused by a vaccine. There is no table entry for autism—vaccine injury has never been proven in the court as a cause of autism. Consider that about 4,800 families are claiming vaccine injury caused autism and that the vaccine court only publishes about 40 decisions a year. It would take far too long to try them all individually. So the "omnibus"approach was taken where a few test cases will be presented as examples of the different ways that vaccine injury is proposed to cause autism. These cases would decide if table entries for autism should be created, and if so what they should be. Three proposed methods of vaccine injury causing autism will be explored: (1) mercury from vaccines; (2) the MMR (Mumps, Measles, Rubella) vaccine and (3) a combination of mercury in some vaccines and the MMR vaccine. This case was to explore possibility (3) cause the autism of Michelle Cedillo.
The proposal was put forth that (1) Michelle was developing normally, (2) she received a vaccines with mercury which suppressed her immunity at the time she got her MMR vaccine, (3) this allowed the Measles in the vaccine to cause a real and persisting infection and (4) this persistent Measles infection resulted in brain damage that caused autism. The rebuttal witnesses argued that (1) Michelle showed signs of autism before her MMR vaccination, (2) there is no mechanism shown where mercury causes immunosuppression, especially seven months later, (3) evidence shows that people with suppressed immune systems do not catch measles from the vaccine, (4) People either recover from Measles or die from it—they don't have persistent infections and they don't develop autism, and (5) the data showing a persistent Measles infection were all false positives due to procedural mistakes and contamination.
There are still eight more cases to be heard on the three proposed scenarios for vaccine injury causing autism. Much of the evidence presented in the Cedillo case goes to the idea of whether the MMR can cause autism. So, this case will not only have an impact on the other mercury+MMR cases, but also on the MMR alone cases.
Autism Diva would add to the above, two (wordy) clarifications according to her understanding of testimony by Drs. Ward and Griffen regarding measles vaccine and a immunosuppressed people. Dr. Ward explained (on Day 8, starting on page 1805 that Zimbabwean children who were HIV positive received the measles vaccines unless they were obviously sick on the day they would otherwise have received the vaccine. So even though they had an immune problem already, they tolerated the measles vaccine. But Dr. Griffin explain starting on page 2793 that patients with AIDS (more seriously ill, with badly damaged immune systems) should not be given the measles vaccine because it's a live, but weakened, virus that their immune systems can't necessarily clear. So in those rare cases where people with profound immunosuppression from advanced AIDS can catch a vaccine strain measles infection from the vaccine that will hang around and eventually cause pneumonia, but not a brain infection. She explains on the next two pages why they give the measles virus to very young HIV infected babies, to give them a chance against the wild-type measles since there's a good chance that their immune system will continue to decline.
People can get a kind of persistent measles infection from wild-type measles, where the virus is not cleared out by the immune system, gets into the brain and sort of lives there quietly replicating and killing brain cells until it gets to a tipping point and takes off, killing more and more brain cells until the person dies (a rather horrible death) from subacute sclerosing panencephalitis, SSPE, described on page 2786 to 2788:
So my assumption of the pathogenesis, and as I say, we never are able to look, we don't have any animal models for this and we can't identify these kids at the time they get their infection and then find out what's happening, is that the virus probably enters the brain in those children at the time of the original infection. Again, often these children are said to have had mild measles, so you wonder whether they mounted a really appropriate immune response at that time. Then the virus, it must just replicate very slowly and spread very slowly through the nervous system through all those years and eventually the thought is it builds up to a threshold that is enough damage and enough virus replication that there are some symptoms.
Once that occurs, as I say, the virus is very widespread and essentially all of those children die, usually within a year or two of the onset of the neurologic symptoms.
Q. What are, you mentioned some intellectual deterioration. What are the other --
A. Intellectual deterioration. There are movement disorders. One thing that's known as myoclonus is a common one. They eventually become mute and bedridden. Really pretty profound and progressive change over that period of time. There's characteristic EEG abnormalities, what they call burst suppression pattern. So one of the ways of trying to diagnose it is that way. Another way to diagnose it is they often have very very high levels of antibody in the cerebrospinal fluid indicating that they're making an immune response locally to the virus that's present in the nervous system. Those are all the kinds of things one looks for.
The imaging CTs or MRIs show big ventricles, shrinking brain, basically.
Q. Necrosis?
A. Well, yes. You're getting cell death presumably due to the infection, the widespread infection that's in the brain. So it's really quite a characteristic picture which fortunately has essentially disappeared from the U.S. with immunization. We basically don't see this diseases any more.
Our guest blogger was correct in saying that measles virus does not hang around and cause autism, if it hangs around in the brain it destroys more and more brain cells until the poor person thus infected dies. And at any rate, there's no evidence than any autistic child ever had a persistent measles infection of any sort, though Dr. Wakefield claimed to have found measles in the guts and CSF of autistic children (and people with Crohn's disease), in fact he never did find any measles. They were a figment of his imagination, not unlike the fictional teapot orbiting the sun between mars and the earth that is too small to be seen by any telescope and the existence of which must be accepted with credulity or not at all.
Perfection is a relative thing. For instance, one can have a hammer that works as perfectly as any hammer ever could, it could be perfectly balanced and the perfect weight for the person using it, the perfect shape for the task, but that perfect hammer wouldn't be a perfect tool to tighten a bolt. A typical ball peenhammer wouldn't do if you wanted to pull a nail from a piece of wood. For that you'd want a claw hammer. And a typical wrench wouldn't be a good tool at all for driving a nail into a piece of wood, or for making a steel drum for that matter.
So perfection, as far as we can reproduce something coming close to it, is in the eye of the beholder.
Perfect World is a book written by David Cohen about his imperfect experience being the father of a young autistic boy. Cohen is a writer by profession and lives in New Zealand. He specializes in writing interviews, and he has written a lot about music.
David Cohen, very kindly sent a copy of the book to Autism Diva by way of Random House, the publisher, in New Zealand. Autism Diva enjoyed the book, but mostly enjoyed the last 3/4 or so of it. The book isn't the perfect book about autism, there's too much emphasis on the benefits of expensive ABA therapy and some of the statements are too broad, like autistic people don't feel the emotions of others.
On the other hand, there are a lot of positive statements about autism and the value of autistic people. There's no sympathy for the autism epidemic hype or the anti-vaccine hysteria. There are some interesting interviews with Dr. Roy Richard Grinker and Simon Baron-Cohen, and some really fabulous stuff about Leo Kanner and a discussion of the whole refrigerator mother thing that sometimes is attributed to Kanner as much as to Bettleheim. There are some really great quotes from people who are opposed to ridding the world of autism, and who really appreciate their autistic family members. The book was meant to seem quirky. It was sometimes a little hard to follow because of the quirkiness, and the seeming randomness of some of the thoughts presented, but this is something that readers of Autism Diva blog have to deal with, so she can't really complain too much about that seeming non sequiturs andwhat looks like inconsequential filler.
Autism Diva kept wondering how autistic David Cohen is himself, so she asked him (by e-mail). After some prodding, and sticking a metaphorical psychogenic tongue depressor into his mouth and asking him to say, "Aaaaaaahhh-gk-k", giving Autism Diva a chance to peer at his cerebellar tonsils, so to speak... Autism Diva decided that Mr. Cohen is probably BAP (Broader Autism Phenotype, or not quite autistic but approaching being so), or he might be BAPP (Broader Autism Phenotype Prince.) Mr. Cohen didn't seem to mind being examined this way or of being given an amateur, long-distance, quasi diagnosis. He was a good sport through hearing Autism Diva's opinions (very negative) of Ivar Lovaas and Applied Behavioral Analysis.
You can see an interview with David Cohen (there's a list of interviews in the center of the page click on "Breakfast: Henry talks to the father of an autistic child who wrote a book ....") on a NZ television station. Autism Diva asked Mr. Cohen if what she saw in the interview was caused by the famed autistic (in)ability to make eye-contact, but he replied that he had to keep looking off to the side to see a tiny monitor. The interviewer was in another studio and was only visible to Cohen on the monitor.
Estee Klaar-Wolfond, mother, writer, art curator and conference organizer, writes interesting things about the unreasonable kind of search for perfection (to seek to have the perfect child, for instance) on her blog. She says in her TAAP video, "We are all imperfect despite our perfection."
In other news, there's an interesting discussion of the Autism Phenome Project out of the UC Davis MIND Institute. Quicktime video here. In the video of a presentation given by some of the researchers at the MIND Institute there is a clip that shows one of the things they are doing in the phenome project: taking photos of the study participants and digitizing the faces looking for and recording dysmorphology. This was great news to Autism Diva who is a big fan of dysmorphology. The little clip from the MIND docs seems to show that they are using the program discussed in this article, or one very much like it: 3D face scans spot genetic syndromes. The scientist who developed the 3D scan discussed in that BBC article is also discussed in this one.
Good blogging, elsewhere: Dr. Andrew Wakefield tried to pin the cause of a somewhat common disease on a vaccine in 1998, what was the vaccine and what was the disease? See Not Mercury's blog entry. "Epidemic" and The emperor's new pathology by Joseph. Steve D gives one dad's opinion on Recovery.
Kathleen has posted another one of her excellent investigative reports on the doings of Dr. Mark Geier, she titled it, "A Case of Good Gatekeeping."
"Gatekeeping," for those who might not be familar with this usage, refers to allowing or denying others access to certain pieces of information. Kathleen Seidel refers to gatekeeping, apparently in reference to the fact that Dr. Mark Geier, in the process of "Frankensteining" together his testimony about a boy who was supposedly made autistic by thimerosal in a saline nose spray decided not to include certain facts about the boy's history, like the fact that his mom smoked half a pack of cigarettes a day during her pregnancy. Notice the use of "Frankenstein" as a verb in a statement from the defendent's lawyer quoted in Kathleen's report.
It's also interesting that the lawyer in this case didn't indicate that mom also had filed a petition for alleged thimerosal containing vaccine damage of her son, and the petition regarding thimerosal doesn't mention the nasal spray petition. That sounds sneaky for some reason, doesn't it?
You really should go and read the whole thing on Kathleen's blog because there are some great parts that Autism Diva removed for brevity's sake. Here are some of the highlights:
On June 1, 2007, United States District Judge for the Northern District of California Phyllis J. Hamilton filed a 31-page order in the product liability case, Redfoot v. B.F. Ascher & Company et al. (C-05-2045-PJH). In this case, the plaintiff alleged that Ayr Saline Nasal Mist was the cause of her son’s autism, and that the manufacturers and distributors of Ayr negligently and recklessly failed to disclose known dangers of their product.
The court was not convinced.
...
The Plaintiff’s Allegations
The child at the center of the lawsuit was born on January 1, 2000. In 2002, he was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified; at the age of three and a half, his diagnosis changed to Autistic Disorder.
In the spring of 2003, the parents learned that certain vaccines and other health-care products contained trace amounts of the mercury-based antimicrobial thimerosal, and that some people believed that thimerosal in medical products could cause neurological damage resulting in autism. Their son had received a routine series of vaccinations in infancy, some of them containing trace amounts of thimerosal; and from the age of two months to three years, his parents treated his recurring nasal congestion with frequent doses of Ayr Saline Nasal Mist, which contained 0.00025% thimerosal.
...
The plaintiff requested an unspecified amount of compensatory and punitive damages. (Although her VICP petition alleged that her son was harmed not by nasal spray but by thimerosal in his vaccines, her suit against Ascher did not reference the vaccine petition or reiterate its allegations; these were mentioned in a motion later filed by the defendants.)
In an expert report dated December 14, 2006, Dr. Mark Geier presented his opinions on “the capability of mercury in thimerosal to cause neurological damage.” He reviewed the history of the use of mercury; the development of thimerosal and its use in medicine; mass environmental mercury poisonings; animal and in vitro studies with mercury and thimerosal, including studies by Thomas Burbacher, David Baskin and Richard Deth; and Bernard et al’s essay asserting a similarity between symptoms of mercury and those of autism. ...
Dr. Geier’s evaluation of the plaintiff’s son listed diagnoses of Autistic Disorder, Toxic Encephalopathy, Porphyria, Mercury Poisoning by Therapeutic Use of Thimerosal, Testicular Hyperfunction, and chromosomal abnormalities. His narrative account of a December 2005 interview with the mother revealed that she smoked approximately a half-pack of cigarettes per day while pregnant, refrained from eating fish, and had eight amalgam fillings in her teeth. ... He was immunized according to the routine schedule, and his recurring nasal congestion was treated with Ayr Saline Nasal Mist. Dr. Geier estimated the child’s total “mercury dose” from Ayr to be 700µg. The mother reported that the child’s development progressed well until the age of one year, at which point his physical and language skills declined. Dr. Arthur Krigsman performed a colonoscopy and diagnosed the child with enterocolitis and “inflammation of the gut.” He became variously a patient of Dr. Jeffrey Bradstreet, a Dr. Bhatia, Dr. Lynn Mielke, and was treated at the Pfeiffer Center. The child was put on a gluten- and casein-free diet, and was subsequently administered prednisone, infusions of secretin, the chelator DMSA and methyl B-12 injections. Beginning in March 2005, he was evaluated and treated at the Lovaas Institute.
...
From these data and his examinations, Dr. Geier concluded that:
“The patient’s neurodevelopmental disorder is the apparent result of a toxic encephalopathy… significantly contributed to by mercury exposure from the Thimerosal-containing nasal spray he was administered… If there was thimerosal in the childhood vaccines, there would have been exacerbation from this additional childhood mercury exposure… [...]”
The Defendants’ Response
The defendants denied the plaintiff’s allegations and requested summary judgment — that is, resolution of the case in their favor. They argued that:
“...[P]laintiffs have no reliable, statistically significant evidence to support their allegation that the Ayr Saline Nasal Mist utilized by plaintiffs is capable of causing autism in the general population, or that the product caused A[...]‘s autism… [T]he scientific evidence offered by plaintiffs is fundamentally flawed, inherently unreliable, and entirely inadmissible. [...]” (Memorandum in Support of Motion for Summary Judgment)
...
The defendants warned the court that:
“Lacking reliable epidemiological or scientific evidence of any association between TCVs and autism (or mercury-induced neurotoxicity), plaintiffs’ expert witnesses attempt to Frankenstein togethera causation argument by extrapolating from in vitro experiments, animal data, and poorly controlled observational studies, while ignoring valid scientific methods. In doing so, plaintiffs’ experts breach the boundaries of legitimate science by employing improper scientific methodology and relying on unproven or improper studies.” (Defendants’ Motion to Preclude)
The defendants submitted five expert reports in support of their preclusion motion. Pediatric neurologist Paul G. Fisher of Stanford University noted several pertinent matters evident in the child’s family, medical and developmental history, including matters recorded in Dr. Geier’s notes on his interview with the mother, but not mentioned in his final expert report:
“The child was developmentally delayed… sitting at nine months, walking at thirteen months, running at 24 months, and babbling lasting until 12 to 18 months. The child was macrocephalic from birth onward… (and) noted at four to five months to be hypotonic… (The child) has a number of other risk factors more likely to lead to autism, such as a history of speech and language problems, maternal smoke, or idiopathic cerebral dysgenesis. I will testify that there is no medical probability whatsoever that A[...]‘s developmental difficulties are related to thimerosal exposure from Ayr Saline Nasal Mist…” (Declaration of Paul G. Fisher)
Dr. Fisher also expressed his concern for the child’s welfare, in view of the multitude of therapies to which he had been subjected with no apparent evidence of medical necessity:
“I am a bit perplexed why the child has received so many other therapies if the mother is convinced the child has suffered a toxic exposure from mercury. It would not be useful at any point to provide chelation therapy to try to remove such and it is unclear to me how therapies such as secretin or other medications would affect the boy’s autism. Chelation therapy is known to be dangerous to children and is not medically indicated for developmental issues. [...]” (Declaration of Paul G. Fisher)
...
Toxicologist Philip S. Guzelian of the University of Colorado Health Sciences Center discussed the matter of chemical toxicity:
...
“...Review of Dr. Lucier’s method to derive exposure (or dose estimates) is futile inasmuch as he provided no equations, inputs or assumptions. Nevertheless, one immediate conclusion is that his calculation must be in error… It appears that Dr. Lucier’s exposure (or dose) estimates overstate the amount of ethylmercury in the Ayr solution by a factor of ten.” (Statement of Philip Guzelian)
Obstetrician and teratologist Patricia Rodier of the University of Rochester described various prenatal exposures linked to autism (these include maternal rubella infection, thalidomide, valproic acid, ethanol, and misoprostol), and commented on the lack of evidence for the thimerosal causation hypothesis:
“It is unscientific and illogical to accord any merit to an hypothesis for which there are no supporting data and many lines of negative data… The plaintiff’s allegation that thimerosal in nasal spray causes autism is based on the earlier hypothesis of a link between vaccines and autism. Since the vaccine hypothesis has been discredited completely, it would be illogical to find any merit in the allegation.” (Statement of Patricia Rodier)
...
The Plaintiff’s Rebuttal ...
In her reply to the defendants’ preclusion motion, the plaintiff reiterated and defended the qualifications of Geier, Lucier, Haley, Bradstreet and Krigsman; denied the defendants’ assertion that their opinions were formulated for litigation; collectively characterized the U.S. Food and Drug Administration, American Academy of Pediatrics, Institute of Medicine, World Health Organization, U.S. Centers for Disease Control, U.K. Committee on Safety in Medicines and the European Agency for the Evaluation of Medicinal Products as an “alphabet soup of organizations… who have discounted the link between thimerosal and autism without discussing the motivation for or foundations of their conclusions”; and recounted a number of cases in which Dr. Geier’s testimony was admitted by the courts.
The Court’s Decision
In her decision, Judge Hamilton delineated and weighed the arguments forwarded by both plaintiff and defendants on every point. She reviewed the use of thimerosal in biological products, and recent investigations on a posited relationship between thimerosal and autism; discussed legal standards for expert testimony and scientific evidence; devoted twelve pages to an analysis of Dr. Geier’s qualifications and testimony, assertions, research methods, and the references upon which he relies; and also considered the qualifications of George Lucier, Boyd Haley, James Bradstreet and Arthur Krigsman. Legal standards for granting a motion for summary judgment were explored, followed by a discussion of standards for determining causation in toxic tort cases.
Ultimately, Judge Hamilton excluded the testimony of all of the experts put forward by the plaintiffs; granted summary judgment in favor of the defendants; and dismissed the case on its merits.
...
On Mark Geier’s qualifications to testify
...
“In particular, there is no evidence that Dr. Geier has either the training or the background to diagnose autism or to treat autism in any child. Simply having an “interest” in vaccines and the possible connection between thimerosal-containing vaccines and the development of neurodevelopmental disorders in children is not sufficient to qualify an individual as an expert in either pediatrics or neurology, or regarding the various forms of mercury and their neurotoxicity.
...
Conclusion
“In accordance with the foregoing, the court GRANTS defendants’ motion to exclude expert testimony and motion for summary judgment. The trial date is VACATED. The clerk shall close the file.” (Order Granting Motion for Summary Judgment)
The Emerging Case Law
The decision in Redfoot v. Ascher adds to a growing series of judicial analyses of the hypothesis that autism is caused by thimerosal poisoning; of the legal arguments advanced by those who seek to extract compensatory and punitive damages for harm alleged to have been caused by thimerosal-containing products; and of the qualifications of the insular coterie of “maverick scientists” and entrepreneurs who profess expertise on the subject of autism causation.
...
“Test Case #2” in the Omnibus Autism Proceeding — alleging that thimerosal alone is capable of triggering autism — is scheduled to be heard before the end of 2007. Experts designated to testify for the plaintiffs include David Baskin, Richard Deth, Mary Megson, Elizabeth Mumper, James Woods, Boyd Haley, and Mark Geier.
...
[Bold emphasis added .]
The judge made it perfectly clear that Dr. Geier was no qualified to be diagnosing children with autism spectrum disorders, and not qualified as an expert in pediatrics or neurology. It's obvious that he's not an expert in pediatric endocrinology, either, but the guy is dosing kids and teens with tremendous amounts of the chemical castrator "Lupron" not to mention "Androcur" which isn't FDA approved for use in the US at all. He's not a toxicologist, but that doesn't stop him from prescribing chelation for children.
This little boy has made the rounds among autism quackery hall of famers. He's seen Jeff "Exorcise 'em" Bradstreet, M.D., who has claimed that bogus lab tests from the O'Leary lab showed measles in kids' spinal fluid when there was none, and of course treated them with expensive IVIG and who knows what all else. Maybe Bradstreet prescribed the (useless except as a placebo) Secretin. This child has seen another Wakefield croney, Dr. Arthur Krigsman who appeared to perjur himself in the Cedillo case and who appeared to diagnose inflammatory bowel disease where there was none in Michelle Cedillo. The boy has been on prednisone, so maybe he got that one from Krigsman, as Krigsman seems to use that one quite a bit, along with Pentasa and 6mp, all of which can have very nasty side effects. He's getting the quack MeB12 shots.
He's seen Lynn Mielke who was JB Handley's son's doctor and who favors using mail order labs and who said in statements to the media that mercury was the second most toxic substance on earth, and later lamented (at the UCD MIND Institute's mini-DAN!) that MD's get such poor training in chemistry in medical school... uh, yeah, Dr. Mielke, apparently, so. At least in your case this is obviously true.
The boy has also been on the GFCF diet and also a soy free diet.
There is commentary on some of the doctors that the boy saw and their non-ranking as experts and commentary on the treatments that the boy has been getting in the court documents, you can read more on Kathleen's blog and she explains how to access the original court documents, too.
Oh, and did you notice that Kathleen shares that case #2 for the Omnibus hearing has been selected? Apparently, Dr. Geier will be put forward as an expert witness in that case... for some reason Autism Diva thinks that means the plaintiffs are really desperate or really don't care if they win, because surely no one is going to take Dr. Geier's word on anything related to thimerosal in court. It has been established over and over again that he doesn't know a single cogent thing about autism or thimerosal, so he just Frankensteins some junk including his own pathetic junk science together and stuffs it into a report, for which he is paid, apparently.
The first two maps of the human genome, published by an international government-funded consortium and a private company in 2001, were based on a patchwork of DNA from several donors. Both versions were also half maps, decoding only one set of the 23 chromosomes on the assumption the two sets would hardly differ.
This set of 23 paired chromosomes, made up of six billion chemical units in total, is the first full human genome ever decoded for an individual – U.S. scientist Craig Venter.
Those maps suggested that humans were 99.9 per cent genetically identical, with only one one-thousandth of DNA information accounting for all the vibrant variety of humanity.
Now researchers from Canada, the United States and Spain have decoded all 46 of the chromosomes belonging to J. Craig Venter, the 60-year-old upstart American biologist whose company, Celera Genomics, compiled the private version of the human genome seven years ago. And the results indicate that those first celebrated DNA maps seriously underestimated the genetic diversity of humans - by a factor of at least five.
The new work suggests that the genetic code in the chromosomes we carry can vary widely, not only between any two strangers waiting at a bus stop, but between brothers and sisters.
"The biggest single surprise is how much we missed the boat with the human genome seven years ago, and how different we really are," Dr. Venter said in an interview. "The overwhelming message back then was that we are all like identical clones of each other. ... It's comforting to know we are more unique than that."
"We're recognizing this form of variation, of these small insertions and deletions, for the very first time," Dr. Scherer said. He explained that researchers once estimated there were about 100 such variants in a human genome, "but now we see about one million of them."
"It's different from everything we've learned ... the chromosomes don't line up at all."
The ongoing study suggests the chromosomes Dr. Venter inherited from his parents are different in at least 15 million places.
Autism Diva highly recommends Prometheus' most recent blog entry, Myths and Legends of Autism, Part 2, though all of his blogging is really good. It looks like Prometheus has moved his blog, so folks might want to update their links or bookmarks.
After you read about the "Brave Maverick Doctors" you might start to look at the Mavericks of Autism a bit differently. The guy who is claiming such huge successes with giving autistic kids methyl-B12 injections looks a bit different when you realize that he was trained as a pathologist, decided he didn't like it, then worked as a medical insurance examiner for 8 years before discovering the wonders of B12 injections, chelation with dicalcium EDTA and HBOT balloons with added oxygen for autism. You might look differently at another of the brave Mavericks of Autism when you find out that that HBOT peddler was kicked out of a university in Pennsylvania, where he was studying to be a doctor, for several problems, including replying on an exam that one thing that "often" happens when a child is diagnosed with a terminal disease is that he gets taken to Disneyland before he "deep sixes it." Later this guy was given a board certification in pediatrics, but only after switching medical schools a few times and ending up graduating from one in the Caribbean. This guy is also an animal rights activist toward the extreme end of that spectrum.
After reading Prometheus on the Brave Maverick Doctors one might look differently at a doctor Hoefflin who is promoting some kind of new wonder therapy for autism. He calls it I6S and the kids suffer from BELT (one of the weirder acronyms Autism Diva has seen). It's strange that he calls autism a left brain problem, when in the past legitimate researchers have compared autism to "right hemisphere syndrome," a term used to describe the changes to people who are thought to have damage to their right hemisphere (the term is sort of controversial among those who study brain damage).
Autism is caused by loss of left brain function. Four new techniques are used to stop and reverse the loss by using: (1) “Right Brain Sensory Patching,” (2) “Left Brain Sensory-Motor Hyperstimulation,” (3) A very effective special community based learning environment called “PEDS-NET” (Parent Education Directed Schooling in a Neighborhood Educational Training Program) where 3-4 “Lion Pride Mothers” and their child cubs train together in a special secure home environment and (4) A unique “Focused Stepladder Training Program. ...
The major part of the program is based on the success at stopping and reversing another child’s neurological disorder. Up to 80% of Autistic children have one crossed eye (Strabismus). Over several months the eye will lose vision unless an “Eye Patching Program” is started. This can stop and actually reverse the visual loss. Likewise, as soon as a child is diagnosed with Autism, a “Brain Patching Program” is started and it too can stop loss of left brain function and actually reverse Autism.
Lion-Pride mothers??? The doctor who is promoting this unreasonable-looking new wonder therapy is what kind of doctor? A developmental pediatrician? A psychiatrist? Would you take your kid to get training in how to think like a neurotypical person from a bizarre acting plastic surgeon in Santa Monica? Hopefully parents are getting a little more savvy and sticking with treatments that have something a little more empirical than a strong personality, a friendly manner and some good schtick to back it up. As Prometheus pointed out, even if the doctor is very serious and sincere, he could still be totally wrong.
In a related vein, make sure you have read Kevin Leitch's recent blog entry about some problems with the claims of "recovery", like how some kids who "recover" don't seem to ever have been autistic at all, and how some parents claim that their autistic child is recovered and then later say that the kid is not at all recovered and about how some healthy skepticism about autism quackery seems to be finding it's way on to some of the autism/mercury/biomed parent boards. Kev's blog entry is called: The Myth of Recovery.
Neurotypicalism Every Day is an answer to Autism Speaks' scary video, "Autism Every Day."
"...We may think it is so sad to see neurotypical children being trained to maintain a group mentality and to forsake true individualism, but at this point it is unlikely that the neurotypical parents of these children will be able to overcome their aforementioned logic impairments to realize how important intervention is if their children are to live to their fullest potential. It is up to us to educate them, and to get them to see that every child is entitled to greatness, even if he was diagnosed with neurotypicality. There can be hope for a better future if we can reach these children in time. " parody by Frank Klein
Movie coming August 30, 2007. A movie that will make you cry, reflect, get mad and move you to give. Neurotypicalism is an epidemic! Nearly 130 of every 150 children is affected by Neurotypicalism, a devastating disorder affecting billions worldwide. Help us cure this terrible disorder responsible for wars, greed, jealousy, hatred, racism, poverty, corporate corruption, homelessness, torture, infidelity, genocide, ableism, bigotry, violence, global warming, tax evasion, gambling, drugs, American Idol, Paris Hilton, and a terrible drain on our planet's resources.
(From the YouTube description of Neurotypicality Every Day, by Christschool.)
Autism Diva thinks the world needs neurotypicals. Well, to maintain neurodiversity, you know (not to maintain the website called neurodiversity, but to maintain the variety of human wiring.) Autism Diva is the mom of one beloved neurotypical (and one equally beloved autism spectrum person). The parodies of neurotypicality-as-a-disorder are helpful to show that there is another way of looking at things, and getting that other perspective can bring real benefits (like respect) to autism spectrum people.
To end on a happy note, an autism awareness Public Service Announcement sent to Autism Diva by an apparently neurotypical parent of an ASD kid. It is from Slovenia it seems, but the voice-over is in English. It's stunningly positive when compared to the Autism Every Day video.
Autism Diva bought a copy of Scientific American: Reports recently because it had an article in in on autism. The whole issue is about research in developmental biopsychology and child development.
Autism Diva was not surprised by the unreasonably negative tone in the articles in this magazine about autism, that tone is pretty typical of discussions of autism research these days, but the negative tone in the autism articles stood out as almost bizarre when contrasted with another article in the same magazine that discussed Down Syndrome. That article was quite positive, encouraging and balanced. It's titled: Just a little bit different. Basically the same article is available online for free. Here is an excerpt:
Lively and Imaginative
While psychologists learn more about the thoughts going through the minds of Down syndrome children, parents, friends and teachers must still grapple with how to help these boys and girls reach their highest mental and social potential. It is becoming clear that the best way to encourage such growth is to interact with the children in lively, imaginative ways.
People with Down syndrome don't "suffer" from their disorder---only from bad treatment by others.
This positive support starts with the parents. Rauh observed that some mothers responded to their children's initiatives in play in a relaxed manner; they were attentive and friendly without trying to control what was happening, which cultivated an especially close attachment between child and mother. Other mothers remained detached from their son's or daughter's play, which left the child detached as well. When mothers seemed to have a need to be constantly involved by controlling and limiting the child's activity, it made the child insecure. Children who felt confident of their mother's interest behaved in a more relaxed way and presumably would adapt better to their surroundings.
Special "games" can help infants as well. Jutta Hatzer, a special-education teacher in Bremen, emphasizes simple measures designed to reinforce self-awareness during a child's first year of life. She demonstrated one exercise during a session with a one-year-old boy, Tom. She stood Tom in a large bucket filled halfway with dry beans, which reached his waist. The beans acted like little massage balls for the baby, who sat quietly and happily in his snug lair. "The enclosure provides security," Hatzer explains. "He can feel his body, sense his limits and get a firsthand notion of himself."
After a while, Hatzer encouraged Tom to grasp the beans. Everything proceeded slowly, step by step--the boy needed plenty of time to deal with each new situation. Hatzer sang simple, made-up songs describing each step ("Tom is in the bucket"). She repeated each phrase several times and soothed Tom with both words and gestures. Through this continuous communication and play the child learned to understand links between his internal and external worlds. This kind of early support, which for Tom began shortly after he was born, is designed to bolster his mental development so that it will be easier for him to learn to walk and talk later.
Some therapists recommend that caregivers use hand and arm gestures in conjunction with words. The children seem to learn gestures very quickly, helping them grasp the meaning of spoken words. For example, the boy mentioned earlier who got cheese instead of a hamburger might have better understood an accompanying gesture for "hamburger"--such as pretending to hold and bite the burger--which could have prevented the misunderstanding.
To bring Down syndrome children along, adults must also be careful not to appear standoffish or afraid of them. People with Down syndrome do not "suffer" from their disorder--only from inappropriately high demands from their environment. They are just a little different. They think differently, handle emotions differently, view things differently, look a bit different and sometimes react in ways we do not expect. They are full of originality and creativity but often do need a lot of encouragement for it to show. If those around them can accept them and be positive, they will develop into full personalities who know what they want and don't want.
One-year-old Tom is still too young to express his wishes. For him, being close to his mother is most important. She takes him into her arms, and he presses his little face into her neck. "What I hope for is that he can remain as happy and content as he is now and that he will always be well treated," she says. "That would be the nicest thing."
Bold emphasis added.
One of the statements from the article "Detecting Autism Early" is attributed to David Amaral PhD who is identified as the head of the MIND Institute, which is not quite correct. Amaral is the Director of Research. His specialty has been monkey amygdalae and hippocampi. The article says that Amaral says there is a "growing view among experts that not all individuals who have autism are 'doomed at birth'" So apparently there are still some researchers who think some individuals with autism are "doomed at birth." How nice. That sentiment looks practically medieval compared to the descriptions of Down syndrome kids in the other article in the same magazine. There's also a stupid statement from someone saying that if there aren't interventions by an autistic kid's second birthday then later interventions are useless because a critical period has passed. Autistic kids are learning speech even when they aren't producing speech.
The so called "critical periods" that might apply to typical kids don't seem to apply to autistic people who sometimes start talking relatively late or very late, with or without lots of intensive therapy, though speech therapy is recommended, to be sure, for any child who doesn't start speaking at typical age. "Peter the Wild Boy" learned English sometime after he was taken to England from Germany in his pre-teen years. Maybe he never spoke German at all as a child, but he probably understood it. Apparently he began to speak English some time well into adulthood. His speech wasn't standard, but it was speech. He answered questions. In English. Peter the Wild Boy sure seems like he was autistic from descriptions. He had a really large head, too. And while we're discussing it, some people can't speak, but with alternative methods of communication such a person may communicate just fine.
DAN! doctor charged in chelation death: Roy E. Kerry
Dr. Roy E. Kerry is a board certified Ear, Nose, Throat doctor with a history of practicing chelation on old people for their hardened arteries. This type of chelation practice can be quite profitable and almost always offers infusions of disodium EDTA because the idea is that the calcium in the arterial plaques is going to get pulled out (chelated) by the EDTA. In real life, it doesn't work that way, chelation doesn't do anything for heart disease, but hey, it's a money maker, right?
Roy Kerry was just expanding his practice to include autistic kids. Abubakar was referred to Kerry by widely beloved DAN! doctor, Anju Usman. Unfortunately, Abubakar's mother or mother and father didn't consider what they were getting into when the went to see Usman who says she never say an autistic kid who wasn't heavy metal poisoned. Surely they didn't consider that Kerry might end up killing their sweet little boy. Surely the organization Defeat Autism Now! had plenty of time to consider what had happened to Abubakar when they decided to make Kerry a DAN! doctor. They seem to have quietly removed a convicted child molester from their rolls around February of this year, will they likewise remove a man charged with involuntary manslaughter in the case of one of his autistic patients? What about the other DAN! guys and gals who have been in trouble with their medical boards and the law in general and what about all the DAN!s who are practicing far outside their training with no board certifications in pediatrics or even family practice at all and the ones with the dodgy educational backgrounds?
By JOE MANDAK | Associated Press Writer 2:49 PM EDT, August 22, 2007
PITTSBURGH - A doctor was charged with involuntary manslaughter Wednesday for administering a chemical treatment that state police say killed a 5-year-old autistic boy.
The child, Abubakar Tariq Nadama, went into cardiac arrest at Dr. Roy E. Kerry's office immediately after undergoing chelation therapy on Aug. 23, 2005.
Chelation removes heavy metals from the body and is approved by the Food and Drug Administration for treating acute heavy metal poisoning, but not for treating autism. Some people who believe autism is caused by a mercury-containing preservative once used in vaccines say chelation may also help autistic children.
The boy's parents had moved from England to the Pittsburgh area to seek treatment for his autism. They have filed a wrongful death suit against Kerry, and the Department of State is trying to revoke his license.
The Department of State has alleged that Kerry prescribed an IV push -- meaning the drugs are administered in one dose intravenously -- despite warnings that the method could be lethal.
Slippery Rock District Judge Clifford Woessner's staff confirmed that an arrest warrant was issued for Kerry. It wasn't immediately clear if police planned to arrest Kerry or mail a summons.
Kerry's Advanced Integrative Medicine has offices in Greenville and Potersville. The receptionist at the Greenville office said Kerry was treating patients and was not immediately available for comment Wednesday.
