Confusing Terminology: When Parents Use Jargon Differently (or when facilitated is used instead of augmentative)

Nothing pushes parents' buttons quite like posts that seem to be or are in fact decrying their favorite mode of intervention for their autistic children.

Write that the evidence of gfcf efficacy is mixed at best (and that's charitable) and you'll have parents screaming it recovered their child, damnit! As a parent who used the gluten free casein free diet for an interminably long four years (and I was on it, too, and never cheated on it), I watched as the evidence came in, as studies were done, and as my oldest would sneak off of the diet, and then, in the last year we were on it, my middle child. As evidence mounted to completely blow out of the water the whole excess opioid theory, as my two oldest indulged in gluten and casein with no intestinal distress and no noticeable difference in severity of issues, well, heck, I gave in and sampled some real food again (I'd stopped eating wheat and dairy with my children because of long term intestinal issues), and lo, I was not ill (not any more than usual) and damn, it was good! And when my biopsy results came back showing I didn't have celiac disease (after two months back eating the good stuff), we stopped the diet entirely and got rid of the rest of the cardboard food. And we never looked back. I don't regret the four years on the diet; it allows me an ability to relate to other parents who are willing to try a lot of stuff to help their kids.

What I'm getting at, in my long-winded way, is I've tried some stuff. Oh my. We didn't go terribly far down the woo trail, but we took a few steps on it. We did some herbs. Nope, no difference. We did B6 and magnesium for the boy. Nope, no difference. And, of course, the four long long long years of gfcf. This is not to say that all three of my children didn't make tremendous gains while on the diet, as they did. They kept making those gains off the diet, too, though. I get trying things, especially if it's diet related. It's a fairly safe change to make. It isn't easy, but it's not likely to do tremendous harm if you're making sure it's nutritionally balanced. I just don't get being so wedded to an idea, a theory, that when the science becomes available to say that it doesn't appear to work, one would refuse to consider, oops, maybe I made an illusory correlation, let's see.

Other areas of autism therapies/interventions that seem to draw a lot of ire is when someone takes the time to point out that facilitated communication has been debunked and that rapid prompting method has never been studied, but bears tremendous resemblance to facilitated communication.

Individuals who are nonverbal can benefit from assistive technologies (which can also be used to facilitate). There is no reason ever for facilitated communication to occur. If an individual can't press the buttons, can't spell, then PECS and similar systems can be used. NSNET provides explanations of assistive technologies:

What Is A Functional Limitation? 
A functional limitation is any physical, mental or sensory condition that prevents a person from caring for him or herself while communicating, working, playing, or simply functioning in an environment where other people can function normally. Limitations can range from a difficulty in interpreting information, to blindness and hearing loss to the inability to move all or part of one's body. Fortunately, functional limitations need not keep any individual, regardless of age or type of disability, from developing their potential and leading a full and productive life. Advances in technology has made it possible for people to meet the challenges of their environment and become independent and productive as possible.

Appropriate assistive technology applications are intended to decrease the functional limitations of a person with a disability, potential outcomes can include some of the following categories:
Adaptive Play: This includes the use of commercially available battery operated toys/activities to allow young children and adults to experience control over their environment despite severe physical restrictions, motor control deficits and developmental disabilities.
Switches: Single and potentially multiple switch access methods can allow the person with even the most severe disability to achieve control over many different aspects of their environment, including play, communication, education, environmental control, mobility, and perhaps employment.
Environmental Controls: Devices and technologies (Electronic Aids) designed specifically to allow a person to experience better control of their environment can increase one's independence and ability to perform routine tasks.
Augmentative and Alternative Communication (AAC): AAC includes any technology application that results in the improvement of a person's communication with individual, in-groups and even by way of telephone. AAC involves maximizing of specific language concepts and strategies to enable the non-verbal person to more actively interact with their environment.
Sensory Disabilities: Many forms of assistive technology can enhance our sensory interactions by modifying the means by which information is received to accommodate our sensory limitation, or by re-routing the information to a form where other senses can be involved.
Alternative Learning Strategies: Somewhat similar to sensory disabilities, alternative learning strategies can be developed for individuals with specific learning deficits. By capitalizing on the strengths of the individual, computer based adaptive learning hardware and software can enhance the overall learning experience.
Adaptive Computer Access: Computers can be adapted through a variety of methods to enable alternative input control or output required by the person with a disability. These adaptations may be in the form of additional hardware, software, or a combination of the two. Most computer operating systems today allow for customization of the computer control process to accommodate nearly any special needs of the individual with a disability.

 No one, no one, no one, no one (do you get me here?) should be so gullible or desperate to fall for facilitated communication. No one. We're not talking about teaching a child to type by hand-over-hand and then backing off, never claiming that the instructional effort is the child's communication. Scientists and researchers are using facilitated communication in a clear and precise way. Please note that laptops, letterboards, and other assistive technology can be co-opted for facilitated communication or rapid prompting (many people will use the term rapid prompting but what they are doing is facilitating).

For an example of facilitating through the use of technology, watch the video below and note the use of the stick to guide the student's touches:

One should be immediately skeptical of this, but for some reason, many let the desire to believe that this kind of communication can occur with help override what should have alarm bells going off.

Again, let me make abundantly clear that I completely support augmentative and assistive technologies that will allow nonverbal children the opportunity to communicate. What I am against is individuals taking that technology and abusing it and the autistic individuals in their care through facilitating communication. Safeguards must be put in place so that it is abundantly clear that the communication is coming solely from the child. Neither FC nor rapid prompting allow that assurance.

The Frontline video from 1993(!) is still  worth watching as it makes it abundantly clear what's going on. It astounds me what people will believe. Don't believe me? Try facilitating someone, fading back your grasp as far up and as lightly as you can go. Think of it as a fun game to play with your children and spouse. Then tell me you can ever watch someone holding another person's hand or arm and buy that the facilitator isn't co-opting it. In the meantime, watch the Frontline video with a skeptic's eye, and ask yourself how easy it would be to make parents believe their child was communicating and why even subconsciously a therapist or individual assigned to assist could facilitate and believe the communication is legitimate. We tend to discount misses, so parents wouldn't attend to when the child didn't correctly respond, assuming instead that the child is tired or being resistant before considering that the child hadn't communicated in the first place.

We must take care not to fall victim to our own heuristics and biases and our overwhelming need to reach our children.

Part 1 of the Frontline episode:

Part 2:

Part 3:

Part 4:

Part 5:

Part 6:

Supporting Skeptics Who Speak Up

Stephen Barrett of Quackwatch is being sued by Doctor's Data. You can read all about the suit directly at Quackwatch, as well as reading Orac's take on it. If you'd like to contribute to Barrett's defense fund, you can do so here.

Other bloggers speaking up on Barrett's defense are listed below.

Liz Ditz

David Brown.

Silenced By Age of Autism

Woo Fighters (another group using a similar name to the one we, the merry band of woo fighters, began using last summer-- you can never have enough woo fighters!)

ICBS Everywhere (blogger who posted on the above Woo Fighters site)


Monica Pignotti

If you run across other bloggers supporting Stephen Barrett, let me know and I'll add them to the list.

Facilitated Communication Quackery gets Journalistic Promotion in Annapolis

Lest you think that the AoAers have a hold on promoting woo or, just as bad, think that the mainstream media had potentially wised up (Kudos, Tsouderos!), a local reporter in Annapolis has an article up on the miracles of FC and how families in the area will now be able to use FC with their nonverbal autistic children (and it appears, potentially have the state government pay for it?). Never mind that facilitated communication has been thoroughly debunked. Never mind that it is in its own way a horrible abuse of  disabled people, to co-opt their communication rather than provide them with reliable methods that ensure the authorship is genuinely their own. After all, much as Age of Autism has shown us, in the autism community, far too often it isn't about the individual with autism at all. It's about the parents.

Want to sell something to a parent of an autistic child? Give them what they want most. Woomeister after woomeister delivers on this. Give them hope, tell them they can recover their child. Better yet, tell them their child is in there, underneath the autism and FC will let you talk with them.

Woodards describes it clearly but misses it entirely:
"But Lester and Linda Enoch of Bowie are convinced of its merits. Last year, a Syracuse representative met with their 14-year-old son, Marcus, to determine if facilitated communication would be right for him. In the course of the conversation, Marcus cried, said he thought the representative was a nice person and said he was frustrated at not being able to be understood. He also told his mother that he loved her."
Want to hook parents? Just provide what so many parents of children with severe autism and intellectual disability want more than anything to hear: their child is locked in, just waiting to be freed. Who's going to walk away from FC then? Really?

Want to make sure to keep people ready to believe and on the defensive? When you make your video promoting FC, make sure to suggest that anyone who dares to question the validity of the communication wants to deny autistic individuals communication. After all, only a big bad meanie would suggest that the communication isn't genuine; make sure you say the skeptical scientists are in essence calling the autistic individual a liar (never mind that the scientists aren't questioning the autistic; they're pointing out that the facilitator is the one creating the communication and in effect taking advantage of desperate parents and denying the autistic individual the chance for authentic communication).

I don't know if Hartman doesn't get a lot of traffic yet to his site, or if the people he's getting there already buy into the warped view of autism, but this gem is offensive:
"People with autism have something to teach all of us: We can either continue to justify the way we think or behave and remain autistic or we can explore the creative, artistic nature of who we truly are." Stephen C. Hartman, LCSW-C
Who else reads this as autism being bad and that it can teach us how not to be? Hartman doesn't seem to think much of autistic people, really: "Whole Self Center’s philosophy suggests that every human being, even a child with autism, is more than a body with a brain."

And the reporter, Woodards, doesn't seem particularly interested in looking into the legitimacy of FC:
Critics question the validity of the method, since the user's hands are being held over a keyboard by a parent, caregiver or facilitator, leading some to believe they are being guided in their responses. In 1994, the American Psychological Association issued a resolution in which it called the method an "unproved communicative procedure with no scientifically demonstrated support for its efficacy."
 As I responded in an email exchange with her, they do a great deal more than question: 

Critics don't question the validity of FC; it's been empirically validated that FC is facilitator co-option of communication. Big difference. You furthered Hartman's agenda and linked to his website where folks can by the video he's made. You promoted quackery instead of examining whether he had any legitimate claims. Parents being convinced is anecdotal and irrelevant to whether the communication is genuine. Study after study has shown it's not genuine. The time, effort, and money wasted on a debunked therapy that could be placed in sound, scientifically validated methods of communication can't be regained.

Your article promotes quackery and has the potential to do real harm to autistic individuals who will find that their voice will not be heard because the facilitator will be the one talking.
One paragraph on critics questioning the validity is about as soft-peddling as one can get. There is extensive research torpedoing the legitimacy of facilitated communication, some of which I've touched on in several places. More statements from organizations which have come out against FC can be found at BAAM. There is no legitimate use for FC and if the reporter had done even a cursory examination into it, she would have discovered that clearly critics do more than "question the validity of the method." They've empirically validated that it is facilitator co-option.

No, it appears that this news article isn't about parents, and it certainly isn't about autistic individuals. It's about Hartman's businesses, though: 

"Hartman's Whole Self Center is a Maryland Medical Assistance Autism Waiver Provider, which means employees go around the state to provide services to autistic children. The agency's partner company, New Ground Publishing, was behind the "Kayla's Voice" video. In it, the California girl finds her voice as she learns to type to talk. Another video, "We're All in This Together: Understanding the Humanity of Autism," aims to help viewers better understand autism."
And at the end of the article, there's this:

"Both videos are available at www.newgroundpublishing.com."
 When you go to the site, you can watch trailers for two videos that will set you back nearly 70 bucks if you're tempted to buy them both. And of course, viewer recommendations there are by the same individual whose quote is the closing line for Woodards' article:
"Once they're open to it and convinced that it's actually their kid inside that's speaking, it's not that hard," Gabor said. "People facilitating need to practice in order to learn the rhythms of the motor movements of the person that needs the help."
In that one line, you have the quintessential reveal. Once you convince the parents, it's just not that hard. You know, like Wakefield, the Geiers, and Haley. You appeal to their gut, what they most want, and then you've got them. Hook, line, and sinker. It's just that easy.


Summer Flowers First, and Then onto Inappropriate Comments at AoA

First, you get to look at some pretty, and then to discuss what seems to be the strange need that Stagliano has to let individuals who are obviously dealing with some heavy issues post really inappropriate things on AoA.

I know, you think they can't top themselves, that you've seen just how nutty they are (and I say this with sympathy for the obvious issues they are dealing with), they go and write this:

"I made a list on the way to the emergency room last night after my daughter had a seizure ( long history of vaccine reactions by all three of my family members) the list was of people I have met over the years that I wished killed. Trouble is to get the real deep satisfication from it- I would have to bring them back to life to kill 'em again." **comment on AoA's craptacular Crosby piece 

And of course, the wackaloon parent duo bensmyson had to rush into day to make sure they maintained their lead in the all out crazy fest and agree with the above comment:

"We should compare notes sometime!"

I get being mad at the world and the crap you have to deal with when everything goes to hell in a handbasket (okay, I don't actually GET it, as it's not a perspective I'd choose to hold), I get needing to get some of that out by blaming whoever I can. I even get venting to a friend, to a spouse. I don't get writing stuff like the above. I just don't. I don't. Bensmyson prove there are no lows they won't collectively go to, and they most often choose to do that at AoA and Respectful Insolence. The first poster, bless her, has a ton of difficult things to deal with, and I really do have sympathy for her. I do.

Both these posters, though, demonstrate why AoA is such a dangerous place. It feeds this negativity. It promotes misinformation, and the editors intentionally, deliberately, hit approve on crazy comments that are beyond the pale. They could clamp down on it. They could make it clear that even in jest, to-kill lists are not acceptable.

Shame on the editors for taking advantage of people who are absolutely, desperately in need of some help, for creating a situation that allows this kind of rhetoric to be rewarded, to promote even crazier rhetoric (all you have to do is go back to the beginning of AoA and read the comments to see that they've gotten progressively more unhinged).

I find it incredibly hard to believe that the editors are unaware of the ramifications of their behavior. They, too, have gotten progressively more bitter, more angry, and more irresponsible.

Each day, though, that I choose to go to AoA to read what often resembles a cesspool of hatred along with gross misrepresentations of what the science has found, about what autism is, and about how most parents choose to cope and function and work for their children, I am grateful for the large community of families out there who are coping adaptively, who focus on doing the best they can for their children and families, who choose not to go where the AoAers have. Each interaction I have with the wonderful autistic bloggers out there who remain hopeful, thoughtful and intent on working for acceptance for all those who are autistic makes me optimistic for my children, for the efforts they will be able to make to further acceptance, to work towards an inclusive society.

I suppose if I believed that the AoAers represented anything more than an extremely small segment of society, I would have less reason for optimism. Fortunately, I think it's becoming more clear to reasonable people that AoA is not the mouthpiece they really want. That's all we could rationally hope for, anyway: that reasonable people would see through them.


Tickling Myself

I have, I admit, serial obsessions. My home is filled to the brim (92 bookcases last count) with books highlighting the nature these serial obsessions have taken over the decades. My bedroom is where most of the fiction is (18 bookcases). The bright boy's room (7 bookcases) holds the science fiction and fantasy (not counting 14 shelves of Star Trek in the dining room). The main rooms of the house hold hundreds of textbooks and scholarly works from all the disciplines. Greek and Roman history, philosophy, and literature? Check. Egyptian history? Yup. Civil War? A couple of shelves (I was a history minor). Science, from biology, microbiology, immunology, genetics, biochemistry, through medical and nursing texts? You betcha. Lots of stuff on space, on quantum theory? You know it. Religions? Two bookcases. Psychology out the wazoo. Archeology, anthropology, philosophy, mythology all well represented in my shelves.

 I haven't read everything, I freely admit; my obsessions tend to wane before I've gone through all the books I've procured. I eventually get around to them, and no interest, once satiated, is ever truly abandoned. I dabble, I dip my toe back in, but my obsessions are just that: often all-consuming. The longest obsessions, though, have been psychology and autism (and these show no signs of abating). Well, to be fair, literature is the longest running obsession, but I'm more interested in critical thinking and writing than I am in dissecting literary works (and even then it's always been about figuring out the author more than the characters).

I know, you're wondering how and what tickled me. I love, adore, and relish textbooks and nonfiction. So, when it was time to take the kids out to swim today, I picked up a couple books to take with me (yeah, I don't do one book--I read dozens at a time). I'm sitting on the bench, watching the girls swim and I pick up one of the books to read, one I just recently got, one from an obsession that was in full force in 1997-1998 (yeah, I can tell you exactly when I was into each particular subject, too).

Oh, wow, you think. Right? I've read  just about every book Hawking's put out. I won't pretend I understood everything, nor even suggest I have any level of expertise, but I soaked up every book I could get on astronomy. I still pick up textbooks and works on astronomy when I run across them.

I open the book, eager to read, and I get to this (I admit, not far):

I busted out laughing here, in part because of The Big Bang Theory, and well, because who wouldn't expect a "basic knowledge of general relativity and quantum theory"?  And well, that obsession was 13 years ago; I found myself wondering just how much I retain, and I'm pretty sure Hawking's assuming more basic knowledge than many would have.

Here's the relevant bit of The Big Bang Theory:

I chuckled and kept reading.  I figured, hey, we'll just have to see.

I liked that bit, since it applies to other areas of obsessive interest to me, so I'm sharing it. Did I mention I really like Hawking's work?

And then I sat the book down by the other one to watch my girls swim for a minute. I looked down at the two books after a few minutes and I really started laughing when I looked down at the two books I'd picked up from my current reading stack.

And then I wisely picked up the Johansen. Reading "technical lectures" while watching your children swim is probably not the best reading material choice to keep one eye on the kids. Johansen's isn't quite as absorbing and doesn't require a basic knowledge of quantum theory, but she's action-packed and easier to put down (some will laugh here and say I have that backwards). Of course, she doesn't have the cool graphics that Hawking provides, but well, it is summer. :-)


Raining Frogs

Sometimes the heavens open up and pour.
You expect rain.
You get frogs.
Spot the frogs?
Okay, you got me.
The frogs came before the rain.
In fact, we're still waiting for those dark clouds to pour forth.
And it rains:

Monkeys and Mice: A Literature Review the Anti-Vaccine Folks Should Embrace But Won't


Aschner and Ceccatelli (2010) review the relevant data for thimerosal as a cause of autism. They conclude there is "no reliable data indicating that administration of vaccines containing thimerosal is a primary cause of
autism. However, one cannot rule out the possibility that the individual gene profile and/or gene–environment
interactions may play a role in modulating the response to acquired risk by modifying the individual susceptibility."

Aschner and Ceccatelli first discuss all the possible exposures to mercury that occur in the environment. There's a lot of potential exposures to mercury, with fish being the primary exposure to methylmercury.

Of interest is this paragraph:

"The incidents in Japan and Iraq revealed the particularly devastating neurotoxic effects of MeHg on the developing nervous system. Lately, also exposure to much lower level of MeHg from dietary sources was shown to have unfavorable neurodevelopmental effects as reported by prospective studies of populations in the Faroe Islands and New Zealand (Kjellstrom et al. 1989; Grandjean et al. 1997). Recent studies point to the critical role that maternal diet can play in the onset of MeHg developmental neurotoxicity (Davidson et al. 2008)." (Aschner and Ceccatelli)

It makes almost no sense on a practical level for parents to be raging against thimerosal while ignoring the reality that their children's exposure to methylmercury is far more pervasive.

Aschner and Ceccatelli note that thimerosal was removed from vaccines under the assumption that toxicity would be similar to methylmercury exposure,  but that since that removal, "it has been shown that the kinetics of tissues disposition and metabolism differ from those for MeHg." They continue: "While the scientific literature supports the concept that MeHg is a potent developmental neurotoxin, the assertion that thimerosal leads to developmental disorders in children is hypothetical and unsubstantiated, resting on indirect and incomplete information, primarily from analogies with MeHg."

As a purely precautionary action, reducing thimerosal exposure made practical sense while conducting studies to look at the potential for neurotoxicity. Unfortunately, we know that those who latched onto thimerosal as a potential cause of autism, have used this cautionary act as proof that the government and pharma knew it was a problem. It's evident from careful and exhaustive reading of parents who buy into the vaccine causation theory that facts and evidence aren't necessary for this belief system to maintain itself  more fervently over time and as each potential theory is shot down.

Safety studies on thimerosal have now been conducted. So have studies looking at autism rates as thimerosal was removed from vaccines.  Aschner and Ceccatelli  conclude from these studies: "Simply stated, MeHg is not a suitable reference for evaluating ethylmercury toxicity. Key observations to substantiate this statement include the following: (1) mercury clears from the body much faster after the administration of ethylmercury than after the administration of MeHg; (2) the brain-to-blood mercury concentration ratio established for MeHg will overestimate mercury in the brain after exposure to ethylmercury; and (3) because ethylmercury decomposes much faster than MeHg, the risk of brain damage is less for ethylmercury than for MeHg."

Aschner and Ceccatelli even spend a fair amount of time reviewing Burbacher's study on monkeys that the anti-vaccine folks love to trot out. Hornig's mice study is also reviewed. If the anti-vaccine folks were about scientific evidence, then they'd have to embrace the conclusions that Aschner and Ceccatelli come to, but anyone who's spent time reading those who embrace autism as vaccine injury knows once they're aware of Aschner and Ceccatelli's literature review, they'll be quick to reject it, especially since the conclusion of the literature review on thimerosal and autism is: "Methodologically sound and rigorous epidemiological
studies have largely failed in finding a significant correlation between thimerosal-containing vaccines and autism. However, efforts to reduce the exposure of infants, children, and pregnant women to any form of mercury from various sources should continue."

Aschner, M., & Ceccatelli, S. (2009). Are Neuropathological Conditions Relevant to Ethylmercury Exposure? Neurotoxicity Research, 18 (1), 59-68 DOI: 10.1007/s12640-009-9113-2


A Good Reminder of Why the Science Moves Them Not

Shankar Vedantam's The Hidden Brain: How Our Unconscious Minds Elect Presidents, Control Markets, Wage Wars, and Save Our Lives is a good read for the layperson interested in what goes on behind the scenes in our brains.

This is an especially good passage and excellent reminder of how science, evidence, facts, etc., do nothing but drive the AoAers more deeply into their belief systems regarding autism and the way to rescue their children (although the passage has nothing specifically to do with these people):

"Regardless of whether feelings were justified, they were real. You cannot eliminate feelings by denying their validity; indeed, denying them usually strengthen them." (page 224)

You see, this isn't about the evidence at hand. Shoot, it isn't even about accuracy, as one blogger tweeted to me (regarding rates of ID in autistic individuals) "@kwombles It's not about accuracy. You take issue with the most credible sources. It's about your aversion to ID association with #autism."

Folks like the AoAers  (and others) aren't interested in accuracy. They rarely argue against what one who follows the scientific evidence contends. Instead, they choose strawmen arguments and wrap themselves in the cloak of sentimentality and rampant emotionalism. It's about them, about their feelings, their experiences, and the fact that they've often created their experiences  from whole cloth, changing their stories of their pasts to match their present belief systems is lost on them. They can't see that, won't see that, and deny the evidence when it is presented to them.

It isn't about accuracy. Not with them. And we cannot reach them as long as we reject the validity of their feelings, their beliefs. I see no way to resolve this divide. Those who are evidence-based simply won't put their fingers in their ears and accept their anecdotes over the science doesn't show a link between vaccines and autism Those who are absolutely certain that their child is vaccine damaged aren't going to remove their fingers from their ears to hear the evidence.

There's no fix to this present divide. Instead the goal of evidence-based individuals must be on those not yet dealing with autism. We must provide good, reliable information, counter honestly and rationally those arguments put forth by those who push pseudoscience. We can perhaps validate the concerns people have about vaccines. There are reasons to be cautious about the medicines and interventions we use. People need to know that vaccines come with risks, but they need to be informed about the relative risks.

If you provide people with the tools to listen, read, and think critically, if you teach them to evaluate claims, to know their inherent limitations and the various biases and heuristics we fall victim to, then you are arming them with the tools to avoid falling victim to those heuristics and biases and to pseudoscience and the charlatans who attempt to prey on them.

Pat Benatar once sang that love is a battlefield.  The AoAers certainly see the vaccine theory and the accompanying wackaloon interventions as battlefields. We'd be remiss and even more foolish to not take them at their word. After all, as Bensmyson foolishly wrote on Tsouderos's latest article:

"Admit it this is the line in the sand, this is where the war begins. One group of people telling another what is best for their child with jail or prison as enforcement. 
You going to have me arrested for thinking my child needs to believe in God? Arrest me for feeding my child McDonalds, not feeding my child McDonalds? Arrest me for giving my child a laxative? After all wouldnt that be a chelation therapy? Oh man and not to mention spanking or home schooling. Jeez we just might start a blood bath. 
My 4 year old son was vaccine injured and I will never be OK with that." 06/24/2010, 11:03 AM

As usual, he/she (the married couple use the one handle and as a consequence, no doubt, sound even crazier than they probably are singly) goes over the deep end on this, but it draws the important distinction I raised in an earlier post that this isn't about their kids; it's about the parents, what they believe they've lost, and the fact that they believe they have ownership over their children.

It's not about accuracy. It's not about the kids. And most the time, it isn't even about autism.

They Swim! And Thoughts about What People Put Their Children Through

Proving that, indeed, two groups at opposite ends from each other can peacefully coexist, the fish that now swim  in the pond (eggs not killed by over-chlorinated water, apparently, in case you'd missed that update) outnumber the frogs. Well, truthfully, the frogs scatter when I walk out to the pond, so it's hard to get an accurate count, but I'm pretty sure I now have more fish than I did before I killed all the big ones (so, I guess I ought to be glad that I did, because can you imagine how many fish that would have been? Over six dozen easy.)
At any rate, the pond is teeming with life. The garden is in its midseason changeover of blooms, the hollyhocks all but finished, the bachelor's buttons done and mostly harvested, the rudbeckias in full bloom and the zinnias beginning their growth spurt. There's lots of work to be done in the garden to keep it looking its best, but it's good work. It feeds and soothes the soul.

Perhaps if those parents whose hearts and minds are filled with anger, blame, and the need to lash out had something that fed their soul, they'd let go of some of the woo? Perhaps if they quit feeding their rage against the world that played them a hand they weren't ready to be dealt and found the joy in their child's smile, the good moments that are there for the picking, they'd be able to breathe deep enough to think through their illogic? I don't know. What I do know is that there are people who deal with tremendous adversity and do it with grace and joy. And there are those who are dealt piddling blows and lash out with a rage and a hate that are out of proportion. I don't know where we draw the line on this; I don't. Do the parents who put their children through hell and back deserve our empathy and compassion or our condemnation? Both?

Without doubt, it is the children who suffer. Suffer through dangerous and unneeded treatments, suffer through their parents' rages (don't tell me their vitriol doesn't reach beyond what they write on the internet), suffer through their parents' disappointment in them as damaged-goods.

Putting mining chelators on your children's foods is not okay. Putting nicotine patches on them is not okay. Giving them laxatives and enemas on a regular (to include daily) to make it easier to put chelation suppositories in their rectums is not okay. Chelating month after month, year after year is not okay. Choosing homeopathy, naturopathy, and other forms of woo over therapies like speech, OT, PT, and cognitive behavioral therapy is not okay.

Loving your children so deeply, so completely that you want to do everything you can to help them live successful, independent lives is understandable and commendable, but when you put your needs, your wants, your desires and go with your guts and your emotions over a deliberate, rational, reasoned out approach to what is safe, reliable, and valid to help your child, you've failed in your duty as a parent to your children.

What we put in their bodies matters, what we say to them, say around them, think of them matters. We are none of us perfect. We all make mistakes. But when we refuse to acknowledge our mistakes, learn from them, and fail to put our children's well-being in front our own, then we fail in our most important duty in our lives: to safeguard and protect our children.

Parents who got their children vaccinated were carrying out that duty. Where they failed is when they believed Jenny McCarthy over statistical evidence for their child's autism. When we stay mired in the whatifs and couldabeens instead of focused on the present and what we have now, we fail our children.

In the end, it doesn't matter why your child is autistic. What matters is now and what you do now. Do you work to help them based on your reason and commitment to them? Do you celebrate who they are as they are? Or do you bemoan the child taken from you? Do you honor their integrity, their right to have safe, informed decisions for their medical treatment or do you really buy a guy who is selling you a mining chelator or a chemical castration treatment? Or endless colonoscopies because even if there are no gastro symptoms and no reason to suspect a problem, he insists that autism is autistic enterocolitis and requires invasive, potentially dangerous procedures just to look?

If these parents breathed deeply for a moment, if they stopped railing at the world, if they stopped thinking they were entitled to explicitly detailed answers as to the whys, would it make a difference? Would it?

If they stopped to smell the roses, would it ease their pain, their anger, or would they swipe at the beauty in a rage that it existed?


AoA: Come On, He's A Nice Guy! The FDA is Mean and So Are You!

Responses to Boyd Haley's warning letter from the FDA can be found at:

Chicago Tribune, Trine Tsouderos's article.


Neurodiversity Weblog: excellent synopsis of how OSR#1 violates federal law, contains the letter from FDA, and links to other blog postings at the weblog concerning OSR#1.

LBRB, first article covering Tsouderos's article.

LBRB, second article covering predictable AoA eh, so what? response.

Prometheus, A Photon in the Darkness.

America's Watchdog.

Disability Scoop.

Autism News Beat.


Steven Novella.

Steven Salzberg.

My earlier coverage.

AoA's response: it's a natural supplement! Can't you leave us alone?

AoA's response is typical, and their loyal readers prove that cogent thought is often just outside their reach.

"It takes a special brand of journalist to so willfully, malfeasantly, and relentlessly insist that the citizenry remain in the dark."
"Exactly Mary, I swear if Big Pharma is freaking out about it, then it must be working... I'm going to give my DAN! a call today! Thanks AOA!"
"Dr. Boyd Haley is a thoughtful and careful scientist who would NEVER release a product unless he had done his due diligence."
"Thanks for reminding me. If the FDA (pharma's lap dog) is going after this stuff, it must work. I better buy this stuff today. The FDA only goes after threats to pharma."

OSR#1 is available at over two dozen pharmacies.  I wonder if they're all still selling it in light of this letter from the FDA? I can order it online here, still, for $80, with $9 shipping.  I wonder if that  last AoAer quoted really believes what she wrote? I hope if she orders it, she shows her commitment to the product by using it on herself  FIRST.

If you're of the opinion that pricier means better, you can by OSR here for $220. Wow. Must be good stuff! Here's what the website has to say about it:
"Introducing a new Antioxidant from Boyd Haley that is a highly purified, safe, non-toxic nutritional supplement. Not recommended for children under 4 years or pregnant or lactating women as a precautionary principle. 
Serving Size: 100 mgs. Servings per container, 90. Pharmaceutical spoon enclosed delivers 100mgs. Active ingredient: N1, N3-BIS (2-mercaptoethyl)isophthalamide. Other ingredient: None. May be taken with food or drink. 
Dosages, indications and any other information contained herein is suggested use only and not to be considered treatment recommendations. Please consult with a healthcare provider for treatment of any illness or condition, especially if you are pregnant, breast-feeding or considering treating a child. We suggest that you consult a licensed physician if you have any health problems and you require a medical diagnosis or medical advice or treatment. Our products are not intended to diagnose, treat, cure, or prevent any disease. For all matters that relate to your health, please contact your physician. 
This product is available only to US residents. We regret that we are unable to ship outside of the US."

CTI hasn't changed its website, yet, either, and still asserts that "OSR#1® is a toxicity free, lipid soluble antioxidant dietary supplement that helps maintain a healthy glutathione level. OSR#1® does so by scavenging ROS (free radicals) thereby salvaging the naturally produced glutathione. Both OSR#1® and glutathione scavenge free radicals, allowing the body to maintain its own natural detoxifying capacity."

It's clear from the FDA letter that this doesn't appear to be the case:

"However, animal studies that you conducted found various side effects to be associated with OSR#1 use, including, but not limited to, soiling of the anogenital area, alopecia on the lower trunk, back and legs, a dark substance on lower trunk and anogenital area, abnormalities of the pancreas, and lymphoid hyperplasia. Based on these animal studies and side effects known to be associated with chelating products that have a similar mechanism of action to OSR#1, we believe the use of your product has the potential to cause side effects, and the before-mentioned website statements falsely assert that the product does not have the potential to cause side effects. Therefore, these statements render your product's labeling false or misleading. As such, OSR#1 is misbranded under section 502(a) of the Act, 21 U.S.C. § 352(a)."

So much for Haley's claim of "toxicity free."

Haley tweeted on May 13th: "OSR#1 is the world's best lipid-soluble antioxidant. What good is an antioxidant if it can't get inside cells to scavenge ROS?" Back in February, he tweeted this: "Contrary to the Chicago Tribune implication, OSR1 has undergone extensive safety testing. The truth is at www.OSR1.com. Please retweet!" Huh. Guess that retweeting had the FDA looking at that testing, huh? Guess that lead to the letter.

 Plenty of people out there are using not only their children but themselves as guinea pigs for things like OSR#1. Especially interesting are some of the messages on the Yahoo Autism-Mercury group, in particular, what Cutler (of the Cutler protocol) has to say about OSR  (well worth the read to see one woonut attack another).

What the OSR#1 story shows is that people believe claims with no strong evidence for them, that exclusivity of products make them more appealing, that renegade mavericks going against the man (big pharma) strikes a chord, that presentation matters (being a kindly looking older gentleman), and that people who are hurting (emotionally or physically) are susceptible to buying into dangerous woo when answers are either not forthcoming from mainstream medicine or the opposite of what the individuals wish to hear.


FDA Steps Up to the Plate on OSR#1

Back in January,Tsouderos wrote on OSR#1, and I covered her article, some of the most outrageous comments, and Stagliano's defense of her use of and shilling for OSR#1; that blogpost is below this updated information.

Tsouderos breaks the story today that the FDA has sent a letter to Haley, which  "details five violations of the Federal Food, Drug and Cosmetic Act related to his product, OSR#1. Failing to correct such violations can result in fines, seizure of products and even criminal prosecution." **Sullivan from LBRB links to the FDA letter.**

Unfortunately, not even this can wake Stagliano up. Tsouderos writes: "In an e-mail, Stagliano wrote that she continues to support Haley, a regular speaker at autism recovery conferences. 'Having met Dr. Haley at conferences, including Autism One in Chicago last month, I continue to trust his science,'she wrote on Wednesday. 'I'm sure CTI Science will address the letter appropriately.'"

Yes, meeting someone trumps safety studies. Promises of a cure (hmm, and maybe a discount to write that yum, it's wonderful on waffles?) apparently outweighs consideration of everything else, like the double standards those at AoA hold for vaccines, where no amount of studies will ever be enough, but one page is good enough for a heavy-duty mining chelator to be given to kids. No problem there.

Undoubtedly, the original posters and AoA supporters will soon be out in full force at the Tribune, and the bat shit crazy detailed below will be back on display. It certainly explains the cupcake hit piece on AoA today. Why is it that they see no hypocrisy in attacking female journalists and their credentials to interview and report on stories and yet believe that two mothers with no science background are absolutely qualified to 1) deconstruct the "14 studies" and 2) speculate that being a red head makes one susceptible to autism (oh, and Rett's in neurodegenerative, but Asperger's, PDD-NOS, and autistic disorder are most emphatically NOT)?

At any rate, here's my January piece, looking at OSR#1, crazy comments, and the insane defense of what is obviously untested, potentially dangerous wooquackery.

Recovery at All Costs, No Matter the Cost: After All, Autism is "a potentially deadly disorder"

Bensmyson, in response to my comment on Trine Tsouderos's article "OSR#1: Industrial chemical or autism treatment? Parents giving kids compound created for use in mining, sold as supplement," writes:

"I believe a parent has the right to do what they feel is best for their child and I support those who take the steps to recover their child from a potentially deadly disorder."
My response to that:

So, a parent thinking prayer is good for type 1 diabetes or cancer in their child is something you support? Lupron, chelation, HBOT, marijuanana, nicotine? That's all good? First autism parents who come out saying crack cured autism, you'll be behind because they recovered their child?

As Ken writes at Autism News Beat, this new story by Tsouderos is the latest in the Tribune's series of potentially dangerous, scientifically unwarranted treatments that desperate parents are using on their children. 

Tsouderos, in her investigation of this miracle supplement that AoA's Stagliano swears by, found that OSR#1 is: 

"An industrial chemical developed to help separate heavy metals from polluted soil and mining drainage."
Stagliano assures AoA readers in December 2008, though, that it is a good thing, and folks should help Haley give it to families for free:

"My three girls take OSR with positive results. (Remember when Gianna learned to tie her shoes?)"

In April 2009, Stagliano really endorses the product, calling for readers to get their doctors or dentists to register with Haley's company so they can provide it. Ummm, parents thinking that dentists can "treat" autism? But big pharma is evil and out to condemn a generation of children to being autistic? Logic, reason, rationality, critical thinking are all offline. But, hey, Stagliano is sure that this miracle DRUG is responsible for all the gains her daughters are making! 

"My three girls began taking OSR several months ago. OSR has been the only recent addition to their treatment. I can tell you that Gianna is now in two mainstream classes in school, Mia is telling me what day it is and what's on her schedule at school and Bella is.... well, Bella is cuter than ever and her receptive speech has improved to where she can follow directions and communicate with her PECS. "
Everybody should be on it! The title is "Unlock Your Health with OSR, The Powerful Antioxidant From CTI Science."

September 2009, Age of Autism is singing  OSR#1's praises: "CTI Science's OSR1 Boosts ORAC Score Better than Acai and other Touted Foods." Well, I say, AoA is, but it appears to be a straight sales pitch from CTI Science/Lee Silsby, and once again, it isn't aimed at recovering autism, but as a powerful tool for health for everyone.

Stagliano writes again about OSR this last week, explaining that she's turned down the interview request with Tsouderos for this week's Tribune article on OSR#1. For Stagliano, it's good enough that CTI Science insists that "OSR is less toxic than aspirin and Vitamin E." 

Yeah, see, here's what I'm not getting. Why are the big pharmaceuticals not trustworthy, but some Joe Schmoes who come up with some "supplements" that will fix autism (and everything else) trustworthy? Why? 

The safety information that CTI Science provides ought to make a rational parent deciding on various treatment options for their autistic children take pause. They tested it on rats and 10 people. It's not been tested on children with autism. No plausible mechanism for why it would help autistic children is offered.

I love this:

So, is it a "single pure compound" or is it "two natural compounds found in fluids of humans and other mammals"? Oooh, what fluid? Pee? Blood? Interstitial fluid? Huh?

They may promise it is "toxicity free" but are quick to warn of allergic reactions:

"Allergic or other adverse reactions may occur at any time with any food or dietary supplement as well as OSR#1®. If you experience allergic or other adverse reactions while taking OSR#1®, discontinue its use immediately and contact your medical professional. Do not resume taking OSR#1®."

I get that some parents are just chockful of desperation to help their kids improve and willing to go down any possible trail to help, especially when they buy into the inaccurate, misguided ideas regarding cause and continue that with elaborate conspiracy theories as to how the government and big pharma are colluding together to cause the most harm possible. It's easy to go that way when you won't stop and engage that frontal lobe and think things through. The anti-vaccine parents rage that there aren't enough studies proving the safety of vaccines, but Haley's OSR gets a pass. All the quack treatments get a pass, because damnit, folks like Stagliano are out there trumpeting how it works, and they've all proven that theirs is a science of one.

Bensmyson writes:

"Wombles, I believe in parental rights. if a parent chooses to pray for a child rather than subject him to chemotherapy or injections of a toxin to keep him safe find, that's their right. let parents decide what is best for their child not the government. I am not anti-vaccine, I am for informed consent. Where are the posters in the waiting rooms of the pediatricians offices warning of potential adverse reactions? Where is the brochure handed to a parent after a vaccination listing the cautionary signs and symptoms to watch for? Where is the contact information for VAERS? Since when is your child's safety and health worth more than mine? Who signed my son up to be sacrificed for the betterment of the herd?" 

No, bensmyson, it's not their right. You obviously don't understand informed consent either. There is a CDC handout given when you are vaccinated detailing adverse effects and the VAERS information.

The rest of his response, not posted here, shows that 1. facts are not important to him, 2. details aren't either.

Title should be changed to, only if it's autism. Bensmyson is good with parents withholding lifesaving medicine for their religious beliefs:

"Wombles - If a parent chooses not to give their child chemo for religious beliefs fine with me. If an adult refused chemo would be be forced to take it? The parent is the guardian of the child, no one has the right to tell them what is best for their child when it comes to putting poison into their body. Chemo or vaccines no difference."

We all know there's a world of difference, of course. In this country, in this culture, we do not believe that parents have the right to do anything they like to and with their children.

It's obvious, though, that many of the AoAers believe they have this right. It's one Stagliano has expressed before:

Note especially the last paragraph. Parents should have the right, within reason, within medical soundness, to decide. But when the child's best interests are not being met, when the child is denied necessary, life-saving measures or given dangerous, life-threatening non-warranted procedures or drugs, the court system has an obligation to step in.

Just because our children came from our bodies doesn't mean they are ours to do with as we wish. We have an obligation to make the best decisions for them, in their best interests, not our own. Well, that's if we've realized it isn't about us, it's about our children.

(As for her first paragraph, well, we know that was crap, too, as no one science-based asserts that vaccines are without risk.)

The Rest of The Story: FDA and Proposed Changes in Vaccine Policy (and a whole bunch of crazy)

Barbara Loe Fisher looks like a sweet grandma, doesn't she? She starts off with her personal story, so you'll feel sympathy for her.

AoA runs her story, without her video and footnotes, today. You should, if you've got seven minutes to kill, you really should go to her site, linked above, to watch her. She's dressed in a soft pink dress suit (well, at least the blazer; she could be in shorts, for all I know). After giving you her personal story so your sympathy is invoked, she pushes her non-profit organization (don't forget, this non-profit gives her a 40K salary a year so that she can make these you-tube videos).

She goes on for quite a bit, keeping just the right tone and inflection to convince the reader that she is in earnest about protecting the public, that industry and government are in collusion with each other to add that dangerous stockpiled squalene.

Here's what the register actually shows:

"Constituent materials regulated under Sec. 610.15 (21 CFR 610.15) include ingredients, preservatives, diluents, adjuvants, extraneous protein and antibiotics that are contained in a biological product. FDA is proposing to amend the regulation for constituent materials at Sec. 610.15 to allow the Director of CBER or the Director of CDER, as appropriate, to approve an exception or alternative to the requirements under Sec. 610.15, when data submitted with the exception or alternative establish the safety, purity, and potency of the biological product. This proposed rule provides manufacturers of biological products with flexibility, as appropriate, to employ advances in science and technology as they become available, without diminishing public health protections. Examples of how the proposed rule would provide flexibility to manufacturers in the use of preservatives and aluminum in biological products are provided below. However, the proposed rule would also provide flexibility to the existing requirements regarding extraneous protein and antibiotics (Sec. 610.15(b) and (c)), provided that each request for an alternative or exception to these requirements is submitted with data that establish the safety, purity, and potency of the biological product."

Okay, it's fair enough to call attention to the proposed change, to request folks take the time to offer their opinions on how they feel about this proposed change. I really don't have a problem with that in and of itself. Is Fisher over the top? Yeah, a bit, but not much compared to the anti-vaccine folks at AoA. In fact, she looks reasonable in comparison.

I mean really, really reasonable in comparison:

"Tis better to poison and infiltrate the population so that they too can join the sickened and dependent on the next new miracle drug, which never cures, but makes you a long term customer. There agenda is showing. Are we listening to it, or taking part? We are if we say a vaccine can be made safer!!!!! Because that still gives them liscence to hide and propogate more vaccines on us. Until we understand the converse relationship of consumerism and profits, we shall have new vaccines introduced every year for our stupid consumption....For the sheeple, they line up for anything without question. The dumbing down eugenics routine sure is working...." --#1 

"While you can confidently predict that the end is coming for this system - it has over-reached itself - it is just terrible to think of the carnage on the way." #2 

"Okay, it's official, they simply want us dead." #3 

"good god.. this is bad...so a manufacturer could propose adding paint thinner to vaccines or completely alter the ingredients altogether and all it takes is the approval of one person." #4

That isn't even the cream of the crop of the crazy over there. Not even close. But, hey, Stagliano's right; they do provide a fair share of my material. Yes, as if I wanted the world to have in its midst crazy conspiracy theorist driven nuts who really think the government and industry is intentionally maiming and killing its citizens. To what frakking end would that serve? Really?