Respectful Insolence

Stem cell quackery for autism, revisited

There are multiple recurring messages on this blog that have evolved over the years, but, if there’s one of them that has been consistent since the very beginning, it’s been about the inherent unreliability of single person testimonials. I wrote about this very topic virtually at the inception of this blog in a post that I still quote from time to time, and I wrote about it just last week when I discussed the case of a woman named Kim Tinkham, a woman who gives every indication of having died of breast cancer, a cancer that had a good chance of being cured had she only pursued effective science-based treatment when it was diagnosed. Not long after this blog started, I discovered other testimonials, testimonials that had nothing to do with cancer. These testimonials had to do with the anti-vaccine movement, and they generally involved stories of how children turned autistic virtually right after being vaccinated (Jenny McCarthy famously said that the “light went out” of her son’s eyes when he received the MMR, although she has given convlicting stories). The flip side of these stories are tales of seemingly miraculous recoveries that allegedly occurred after whatever woo du jour a parent was trying.

The reason testimonials, which are, let’s face it, simply anecdotes about one person (i.e., and N of 1) in which there are rarely any objective, properly done clinical results examine, seem so compelling to the average person is because most people don’t realize two things about the diseases and conditions for which testimonials are common. First, it’s not a coincidence that most conditions for which testimonials are used are conditions that either have a wide degree of biological variability (i.e., breast cancer) or a course that frequently varies (i.e., autism). In the case of cancer, the difference between primary treatment and adjuvant treatment is often misunderstood, wherein people who had curative surgery for their tumors are presented as though whatever quackery they tried after surgery cured them, even though it was the surgery that cured them. In the case of a condition like autism, there is often the underlying assumption that the child will never develop–would never have developed–without whatever intervention the parents subjected him to. As I’ve pointed out many times, that assumption is erroneous; autistic children can and do develop, often in fits and starts, just like other children, and sometimes they can even develop to the point of no longer meeting the criteria for autistic spectum disorders. Not surprisingly, these are the children who are often presented as “cured.” Second, most people do not understand the law of large numbers, which basically shows that coincidences are not as uncommon as people assume, simply because even seemingly unlikely coincidences can happen to thousands if you start out with numbers in the millions or tens of millions, thousands are a small percentage of that. That’s why, for a correlation between vaccines and autism to be found, it is necessary to show that there is an association between the two that is greater than what would be expected from random chance alone.

Combine all this with the fallibility of human memory, peer pressure among “curebie” groups to whom parents of autistic children often turn for advice and support, and reporters who do not understand the above problems inherent in interpreting anecdotal data any better than the average person does (or perhaps even worse), and the result is a truly atrocious news story about pure quackery, namely “stem cell” treatments for autism administered in a shady clinic in Central America. You may remember that I described this very “treatment” when Age of Autism regular Kent Heckenlively wrote about borrowing $15,000 from his daughter’s grandparents to travel to Costa Rica and have dubious “stem cells” injected directly into her cerebrospinal fluid by lumbar puncture and into her bloodstream by injection.

Daniel Faiella subjected his son Matthew to similar quackery and presenting his son as “cured.” His story begins, as so many of them do, like this:

Today, Matthew Faiella is an energetic 10 year old boy. “When I was younger, I played with toys. I watched video games, I go on the computer.” But years ago, Matthew couldn’t have told you that.

Matthew was diagnosed with autism at 18 months.His doctors thought he would eventually end up in an institution. Today, Matthew dreams of being a pediatrician.

Note how the reporter frames the story to make it sound as though the quackery to which Matthew has been subjected is the reason why he is currently doing so well. No one, least of all me, begrudges Matthew or his father their good fortune, but there’s no evidence that stem cell treatments, particularly dubious stem cell treatments in quack clinics in Central America, are likely to do anything but harm. However, let’s back up a bit; the stem cell treatments weren’t the first treatments. Like most parents, Faiella started out with less radical treatments and worked his way up:

The Faiellas tried traditional methods including the gold standard, ABA, or applied behavior analysis therapy for treating autism. “It didn’t really work for Matthew. It gave him two word sentences but that’s where it stopped.” his father Daniel tells us.

About 5 years ago, Daniel heard about a treatment involving a hyperbaric chamber. “The pressure pushes oxygen to blood plasma where oxygen doesn’t usually go.” After trying it in a local doctor’s office, he bought his own. “Within the first week he started to say full sentences.”

Three years ago, Daniel met a family who suggested stem cell transplants. “I said well, I’m against that. It’s against my religous beliefs. She said no, it’s adult stem cells and the Catholic church actually approves of it.”

Matthew will complete his 5th stem cell treatment in Panama in 2011. Even his pediatricians admit that Matthew has made tremendous strides, but Daniel is hoping for a complete cure. “I won’t be around forever to protect him. So I want him to be on a level that people wouldn’t even know he had a disability.”

While Faiella’s love for his son shines through in this account, unfortunately, the way the story is framed is as the loving father willing to do anything–and I mean anything–to “recover” his child. It’s pointed out that the hyperbaric oxygen chamber costs at least $17,000 (although in this article Faiella states that the hyperbaric chamber cost him $21,000), and that each stem cell “treatment” costs the same. Add that up, and Faiella has already spent $89,000 on a hyperbaric oxygen chamber and four stem cell treatments, and he’s ready to drop another $17,000 on a fifth one. That’s more than a cool $100,000 thus far. True, the article does mention that Matthew’s doctor doesn’t think the stem cell treatments work, but overall the story gives the impression of the heroic father fighting against an uncaring medical establishment, which, by the way, is the same impression one gets reading his blog Recovering Matthew.

Unfortunately, reading about Matthew’s story on lbrb, one finds out another reason why testimonials sound so convincing. They evolve to become so. In multiple media appearances, Faiella painted a truly grim portrait of his son’s condition at his initial diagnosis, stating that doctors thought he might have to be institutionalized, stated that his son was almost nonverbal and that he was given no hope for his son’s recovery. Yet, as the Guest Blogger pointed out, on Internet discussion forum postings, Matthew’s mother gave a very different impression. Here are two quotes, first one from when Matthew was four years old:

Matthew was diagnosed at age 20 months to have PDD/NOS. This neurologist just doesn’t seem to agree with that diagnosis at all. He says Matthew is just too different to be given that diagnosis. His is very loving, able to learn easily, is learning to read, can write beautifully, and has a great memory to the point of possible photographic memory.

Several months later:

Matthew was diagnosed as language delay at 18 months, then that diagnosis was changed to PDD-NOS at 22 months. He had the PDD/NOS label until just a short few weeks ago. [...] In the end they told us that NO he is not on the spectrum. However, he does have a SEVERE receptive/expressive language disorder. [...] They told me that with TONS of speech therapy he could get to be so typical that no one would know he had ever had a disorder at all.

Other excerpts indicate that Matthew was spelling and reading words by age four and that at age 6 his handwriting was advanced for his age. Moreover, there is apparently evidence that the parents went back and deleted and edited old posts after the release of their book about Matthew and his “recovery.” What the Guest Blogger leaves us with is the impression of a boy who had a learning disability and was apparently later appropriately diagnosed as being “on the spectrum” but whose language skills were actually quite good for his age five yers ago. They had been told that with lots of speech therapy Matthew could indeed develop to the point where no one would be able to tell he had a receptive/expressive disorder. The whole thing is rather muddled, but one thing isn’t: The old forum posts do not paint a picture of a nonverbal, severely autistic child, whose recovery is only recent, after the HBOT and stem cell treatments. For instance, at age five, his mom marveled at the contrast between when Matthew was diagnosed (he was nonverbal) and at age five. She even described him as a “little chatterbox.”

Testimonials, even when done with the best intentions, have a tendency to take on a life of their own. They are, all too often, the epitome of selective memory. It may not even be intentional. Human memory is incredibly fallible, never more so when the issue involved is a highly emotional one like dealing with a child with serious problems like autism. Confirmation bias leads to remembering what best fits in with one’s hopes and dreams and forgetting that which does not. Meanwhile, a story often grows with the telling, and timelines become skewed to fit that resonates emotionally. Add to that all the acclaim that comes from the “biomed” community, the attention from the media, and the seeming confirmation of the correctness of one’s choices, no matter how criticized they were at the time, and it’s not hard to understand how these stories persist and why they seem so compelling. It may not even be so difficult to understand how parents can lose their way and even forget how much progress their child has made in favor of the idealized “perfect” or “normal” child that they continue to seek. Unfortunately, the testimonials of such parents are the tools used by purveyors of unscientific “biomed” remedies to recruit the unwary.

Comments

  1. #1 Korkut V.
    December 16, 2010

    I worked on molecular cardiology for several years. I do not trust any “edited scientific content” 100%. And the blog and news resources are even worse. What I do trust is the pure sequencing information and accurate statistics. Stem cell studies will start making sense after the genome sequencing revolution…

    Michael phelps was the advertising face for ADD. I won’t buy the story “He is an olympic swimmer because of ADD”. It is in evitibale that even peer-reviewd scientific content has some advertisement material. And mild scientific content is missleading.

    There is a long way to go and genome sequencing will show the road ahead.

  2. #2 islami sohbet
    December 16, 2010

    Aşk; kayıtlara yokluk düşürerek yapılan varlık yağmalaması. Aşk; kayıtlardan da düşerek kayıtsızlık kaydına geçme çabası. Aşk; bir “HİÇ” levhasına atılan imza, harflerin batnında gizli mânâların mânâsı. Aşk; özleyenle özlenenin bitimsiz vuslat hülyâsı. Aşk; dipsiz kuyulara salınan gönüllerin susuz kovası. Aşk; muallakta duran deniz, kıyısı olmayan sonsuzluk deryâsı. Aşk ;” Üç Harf Beş Nokta ” da hülâsâ edilen kâinat yasası.

  3. #3 Militant Agnostic
    December 16, 2010

    As I understand it these dodgy stem cell therapies all involve getting someone else’s stem cells. Isn’t this kind of like getting an organ transplant? Wouldn’t the immune system attack the foreign stem cells?

    These testimonials are often the result of the reluctance of the marks to accept that they have been scammed. This is the case in medical scams just as it is in financial scams.

  4. #4 Ender
    December 16, 2010

    Well I agree with islami. Apart from that one controversial thing that I’m sure shocked all of you. I don’t agree with that.

  5. #5 wintermute
    December 16, 2010

    Google claims islami is saying:

    Love, the records of the asset yağmalaması reducing poverty. Love, the records in an effort to beat the record of indifference to fall. Love was a “NO” signature plate, the hidden meaning behind the meaning of the letters batnında. Love, the longed özleyenle Vuslat hülyâsı endless. Love, the bottomless wells, bucket of water released from the hearts. Love, suspense, plant and equipment, marine, non-infinite sea of the coast. Love, the “Five Point Three-letter” law of the extract of the universe.

    Not sure what that means.

  6. #6 Denice Walter
    December 16, 2010

    Testimonials are highly subject to external influence ( e.g. Loftus- how labels used in questioning influence memory in eyewitness accounts)- it’s easy for a provider to “lead” a willing participant( parent) who avidly desires seeing improvement. If you look over testimonials ( any woo will do), there is a definite story-arc**
    : a problem not easily, or instantly, fixable – discovery of a “special” method/ “special” healer/ “special” information leading the person to change behavior/ diet/ belief ( “mending the error of their ways”/ “seeing the light”)- the final transformation, conversion, and proclaiming the miracle. I deliberately use the language of religious conversion, including the role of a “healer”, who may grandiosely relish that role. In other words, it may be true that woo-meisters aren’t only “in it for the money”- they want *so* much more.

    ** probably heavily influenced by James.

  7. #7 Todd W.
    December 16, 2010

    @Militant Agnostic

    There is often some question as to whether the substances being injected are even stem cells at all.

  8. #8 Calli Arcale
    December 16, 2010

    Militant Agnostic — yeah, if I recall correctly from reading people who actually know about this stuff, random stem cell injections are most likely to do bupkis, because the cells will be destroyed, and even if they weren’t, there’s nothing telling them to do whatever it is the stem cell therapist intends them to do. It’s just as likely for them to grow a liver in the middle of the brain as for them to cure autism (i.e. not really likely at all — I would think a tumor would be more likely, actually, assuming the cells even survive the process).

    This is an interesting testimonial to me, because it sounds like this boy is very much like my daughter — that is to say, someone who frankly is not that badly afflicted. How could that possibly justify $100,000 in “treatments”? Odds are, he’d grow up basically normal with no intervention at all, though behavioral and educational intervention will significantly improve his chances.

    The hyperbaric chambers for autism treatment are insane. I mean, there is absolutely no reason to think that would help. An autistic person’s neurons are actually functioning properly. Giving the more oxygen will not affect the way they are organized, or the way they interact with one another. Also, the specific model is, like all the home HBOT chambers I’ve seen advertised, an inflatable device. The manufacturer’s crappy website doesn’t list specs, but these generally are not capable of producing much of an increase in atmospheric pressure — and I’ve read that many are, in practice, used with air rather than oxygen. This makes them useless even for legitimate HBOT therapy, which makes it even more mind-boggling that they can get away with selling them.

    I was also amused to note that the company selling the Flexi-Lite Hyperbaric Chamber is called “Zero Point Field Health”. Sounds like they may be into physics woo too.

  9. #9 Mu
    December 16, 2010

    Hmm, if I lock my 5 year old in a tube for an hour he’s going to say anything I want too.

  10. #10 Militant Agnostic
    December 16, 2010

    There is often some question as to whether the substances being injected are even stem cells at all.

    I am shocked I tell you, shocked!

  11. #11 Militant Agnostic
    December 16, 2010

    The manufacturer’s crappy website doesn’t list specs, but these generally are not capable of producing much of an increase in atmospheric pressure — and I’ve read that many are, in practice, used with air rather than oxygen.

    So it is equivalent to spending time at an indoor soccer facility or any other such building with an air supported roof?

  12. #12 DonZilla
    December 16, 2010

    . . . but overall the story gives the impression of the heroic father fighting against an uncaring medical establishment . . .

    Where’s Lifetime Television when you need it?

    (ugh)

  13. #13 Liz Ditz
    December 16, 2010

    If I am recalling correctly, there were several skeptical series on HBOT for autism, which are summarized by Do’C

    For readers who may be interested in a skeptical perspective with regards to “mild” hyperbaric oxygen therapy for autism, I’ve assembled a short list of links. These are articles that I’ve enjoyed reading, found interesting, or written myself.

    Mild HBOT for Autism: A Skeptical Guide

  14. #14 Clam
    December 16, 2010

    Feel so sorry for the parents, myself. Even sorrier that they’re so gullible.
    @#5 Hey, I thought Islami’s argument was so elegantly phrased and totally logical. Couldn’t have put it better myself. Didn’t quite understand what he was going to blow up?

  15. #15 Pablo
    December 16, 2010

    The reason why I consider testimonials to be worthless in terms of drawing any conclusions is not just because of the statistical problems associated with N=1, but more to the fact that way too often, said “testimonies” aren’t even true in the first place, or are highly distorted.

    The reporter who wrote this story about Matthew was misled. I hope that Guest Blogger and/or others have informed him/her about the reality of the situation, and has leaned on him/her to write a retraction.

    This is how to stop this: call out the liars. Let everyone know that this boy’s father has lied about the child’s development. In light of how much money he has wasted on useless treatments, I can imagine why.

  16. #16 Calli Arcale
    December 16, 2010

    Militant Agnostic:

    So it is equivalent to spending time at an indoor soccer facility or any other such building with an air supported roof?

    Sure, unless it’s the Metrodome. :-D (Seriously, the video of the collapse/deflation is pretty awesome, and the damage is impressive. There is now some doubt whether it will even be ready by the next scheduled event after the Vikings are done — a monster truck rally in mid-January.)

    Liz:

    Thank you for that comprehensive set of links! You always know where to look for information, and it’s wonderful that you share that with the world.

  17. #17 Scott
    December 16, 2010

    The reason why I consider testimonials to be worthless in terms of drawing any conclusions is not just because of the statistical problems associated with N=1, but more to the fact that way too often, said “testimonies” aren’t even true in the first place, or are highly distorted.

    Selection effects are also crucial. Nobody’s going to solicit testimonials where their products didn’t work. Accordingly, they represent the very best cases available.

    An N=1 report selected at random would be hugely more valuable than testimonials, which provide no information except about the best possible outcome.

  18. #18 nichole
    December 16, 2010

    Regarding randomly injecting stem cells into various parts of your body: I thought I heard somewhere that if they’re not given any instructions, stem cells are most likely to just make cancers (assuming they’re not just destroyed by your immune system).
    I’d rather not get my lumbar punctured just for a placebo! Can’t I just have the sugar pill please? At least I can throw that in my coffee…

  19. #19 Giliell
    December 16, 2010

    I can give convincing testimony that the MMRV vaccination made my daughter have her 4 molars virtually painlessly. Well, OK, she was always an easy teether, but you never know.

    As somebody who spends a lot time around toddlers, I always find it amazing that pediatricians tend to diagnose kids with language delay at a very young age when their normal developement has such a broad range. Very often speech will develop dramatically once a kid is in Kindergarten, because there for the first time people, especially other kids won’t read from their lips.

  20. #20 The Gregarious Misanthrope
    December 16, 2010

    Let’s see, selective editing of old posts contrary to your current story, big “medical” bills, new book about a miraculous recovery. Mmmmmm, I smell money.

    What’s a little lying to cover the bills? No harm, right? As long as others don’t get sucked into the woo…

  21. #21 Kristen
    December 16, 2010

    Callie,

    his is an interesting testimonial to me, because it sounds like this boy is very much like my daughter — that is to say, someone who frankly is not that badly afflicted. How could that possibly justify $100,000 in “treatments”?

    This also sounds similar to my daughter who was just diagnosed with PDD-NOS (she draws amazingly well, but doesn’t use much intelligible language and doesn’t seem to understand what we are saying). We are seeking speech therapy for her and integrating ABA and OT into her daily routine, but even if I were into woo I wouldn’t think she needed extreme treatments.

    And injecting substances into the CSF! How is this not child abuse? IANAD but I would think an infection from one of these “treatments” could easily be fatal. And I would think, for an autistic child general anesthesia would be required? Not to mention the killer headache one gets from this type of injection (in my experience with spinal anesthesia).

    How does one get to the point where they are willing to endanger their child’s life like this?

  22. #22 Autism Mom
    December 16, 2010

    Hmmmm…..modern medicine advocates will go to any extreme ridiculous measures to discredite alternative treatments….*NOT SHOCKING* at all to a mom who has been through a very similiar situation as Matthew’s Dad minus the stem cells…..Alternative biomedical treatments are the ONLY way to get a child truley recovered….what is sad is the gullable parents who are misled by these ridiculous blogs trying aimlessly to discredit alternative biomed…….KEEP UP YOUR BLOGGING….IT IS RATHER AMUSING TO US PARENTS THAT KNOW WHAT YOUR ALL ABOUT….LOL

  23. #23 Julian Frost
    December 16, 2010

    My dear Autism Mum,
    Firstly, learn to spell. Secondly, I was never subjected to biomedical bunkum and I actually hold down a job as a software test analyst. Thirdly, Matthew’s father has “altered” what he said. I’m guessing that Matthew not only isn’t “recovered”, but that he would be at the same developmental point even if he hadn’t undergone treatment.

  24. #24 Kristen
    December 16, 2010

    It is painfully apparent that Autism Mom has not read this article, nor the comments.

    But I would welcome her evidence that “alternative bio-med” treatment is more than a way for quacks to make money.

  25. #25 Calli Arcale
    December 16, 2010

    Autism Mom — I’ve been through the situation too, having a child with the same diagnosis. She’s seven now, reads avidly, is brilliant and likeable, speaks clearly and distinctly, and is well on track to be completely mainstreamed in a few years. The only interventions she’s had are educational and methylphenidate to help with her attention problems.

    She is doing as well as Matthew, with far less risk to her health, and far less expense. Strange, that, if, as you say, “alternative biomedical treatments are the ONLY way to get a child truley recovered”.

    Do you know what the risks are for these interventions? Do you know what the rate of actual recovery is (as opposed to merely a statement that someone’s child got better afterward)? Do you know what the rate of recovery* without treatment is? Are you willing to risk your child’s life in hopes of a slight improvement in his/her speech or behavior?

    If you cannot answer these questions with more than just gut feelings, then I’m afraid you know far less about the situation than you think.

    *I am defining “recovery” here as “improves enough to live a successful and independent life as an adult”, which really is the main goal of any parent for their child.

  26. #26 Liz Ditz
    December 16, 2010

    Calli,

    1. Praise is a motivator. Updated list of studies and critiques of studies, HBOT & autism. Includes link to the non-discussed 2010 Jepson / Thoughtful House study that found HBOT ineffective.

    2. (off topic) would you mind emailing me? I have a question re girls & autism.

  27. #27 Autism Mom
    December 16, 2010

    Dear Calli,

    Why don’t you explain your concerns to our two *randomly* selected (in two different states that we have lived) Pediatricians (the almighty MD initials behind their names) that have FULLY supported us with our alternative biomed treatments AND witnessed my son’s ongoing recovery from his vaccine injuries. While his genetics played a role, the vaccinations pulled the trigger.

    How fortunate for you that your daughter’s genetics were mild enough that the methylphenidate was able to get her so far. Good for you, but shame on you for going along with this evil blog that deceives parents (just like the news media).

  28. #28 Chris
    December 16, 2010

    The plural of anecdote is not data, just anecdotes. Autism Mom, how do we know that your recollection of accounts is not as flawed as the subject of this article?

  29. #29 Knightly
    December 16, 2010

    Most days I usually think scientists need to be as honest and accurate as possible.

    Others, I think if this is what it takes to get stem cell research approved, well…

  30. #30 Julian Frost
    December 16, 2010

    Also, Autism Mom, please provide good evidence that your son would not have developed to his current level had you not subjected him to biomed.

  31. #31 a-non
    December 16, 2010

    Gee, it took seven hours for the pro-disease trolls to emerge. Must’ve been a rally on the steps of the Capitol building or something.

  32. #32 Todd W.
    December 16, 2010

    @Autism Mom

    Alternative biomedical treatments are the ONLY way to get a child truley recovered

    What about those people who have not tried biomed treatments for their children, yet their children improved and lost their diagnosis?

    Also, you criticize Orac for pointing out the questionable aspects of Daniel Faiella’s story. Please tell us how you reconcile the conflicting stories of Matthew’s development? Please show us that there are no discrepancies. You may also wish to address the whole fallible human memory issue and discuss how it appears that folks who advocate for biomed treatments are immune to the vagaries and flaws of memory recall.

  33. #33 Giliell
    December 16, 2010

    Dear Autism Mom
    Well, how could anybody here make any comment on the treatment your kid received when all you give is the broad label “alternative biomed”? Is something effective just because it is not approved by “official” medicine? And is vice versa something bad because it is normal medicine?

  34. #34 Prometheus
    December 16, 2010

    Todd W. (#32) asks “Autism Mom”:

    “You may also wish to address the whole fallible human memory issue and discuss how it appears that folks who advocate for biomed treatments are immune to the vagaries and flaws of memory recall.”

    Actually, since Matthew’s parents went back and deliberately altered earlier ‘blog entries, apparently in order to reconcile them with their current “narrative”, it would seem that fallibility, vagaries and flaws in memory are not at fault here.

    This would seem to be more a flaw in truthfullness.

    I don’t usually call people liars when their “narrative” conflicts with reality, but I’d have to say that altering the record is suggestive of an intent to deceive.

    Prometheus

  35. #35 Todd W.
    December 16, 2010

    @Prometheus

    I was being generous. Besides, more often, I think, the fallible memory thing is in play. I could imagine that even in cases where they go back and edit/delete the original stories, they may be operating under the delusion that they must have been wrong that first time, since they “clearly” remember how things were, now.

    At any rate, operating under the assumption that the Faiellas were not being dishonest and that their story just drifted, I’m still interesting in how Autism Mom would address fallible memory, both for the Faiellas and for all those other families we hear about.

  36. #36 Autism Mom
    December 16, 2010

    To Adress All Comments:

    We all have to use our own inner instincts to determine what is true or false in this world. I know Daniel (Matthew’s Dad) personally and there is NO WAY he would be spending $17 K (or more) a treatment and going for a 5th stem cell treatment if he wasn’t seeing an ongoing significant improvement with each one. He went into major financial distress for these treatments.

    As far as my own son’s ongoing improvements……I have a hunch that I wouldn’t see a HUGE leap in his ability to communicate immediately following a mercury dump on fecal metal testing if this was just a “coincidence”. Or, see him cross the midline for the first time EVER to wash his hands following adding supplements to facilitate left/right communication after heavy metal excretions. Considering that I do not take him for ANY OT, speech or ABA services…..I find that extremely hard to believe that it would all just happen on its own.

  37. #37 Militant Agnostic
    December 16, 2010

    But Calli, your daughter is not “truley recovered” and she probably puts sugar on her oatmeal as well.

  38. #38 Chris
    December 16, 2010

    Autism Mom:

    I know Daniel (Matthew’s Dad) personally

    Oh, good! Could you please ask him why he changed earlier Autismweb and other forum entries? That is very suspicious.

  39. #39 Rogue Epidemiologist
    December 16, 2010

    Autism Mom said,

    “We all have to use our own inner instincts to determine what is true or false in this world.”

    Two words for you, ma’am: Confirmation bias.

    The human mind has a tendency to detect patterns and may see them where there are none. The human mind also tends to focus information that fits their preconceived notions. You may see results or progress where there really is none.

    To counteract this innate bias, it is important to do measured, controlled studies.

    If the solution to autism were as simple as oversaturating the blood with oxygen, that would be awesome! After all, it’s so simple, much easier than hours up hours of ABA for years. But so far, the studies don’t show that to work, so science doesn’t recommend going that route.

  40. #40 Mu
    December 16, 2010

    So, autism mom zombifies her daughter with Ritalin and chelates her son. Very compassionate.

  41. #41 Todd W.
    December 16, 2010

    I would venture to say that a lot of folks who follow biomed treatments repeatedly are exhibiting the same sort of superstitious behavior that pigeons in behavioral experiments exhibit. I do not mean this as an insult, by the way. It is just a fundamental principle of behavior, that consequences which are favorable (improvement in autism symptoms) and which coincidentally follow some action (e.g., pursuing stem cell injections) reinforce taking that action.

    Google “pigeon superstitious behavior” to find out more about this.

  42. #42 Giliell
    December 16, 2010

    Dear Autism Mom
    Inner insticts are really good for cavepeople. They’re good for finding out when to run from a dangerous bad carnivore. They came up with such wonderful ideas that the sun moves around the earth and that blood letting were a good idea.

    Today we have science, tests, studies. I know, you probably don’t like them, but that doesn’t invalidate them.

    So your son makes progress. That’s wonderful and I’m glad about it. But why do you even refuse something like speech therapy? Why not give him that extra advantage?

  43. #43 Calli Arcale
    December 16, 2010

    Autism Mom:

    Why don’t you explain your concerns to our two *randomly* selected (in two different states that we have lived) Pediatricians (the almighty MD initials behind their names) that have FULLY supported us with our alternative biomed treatments AND witnessed my son’s ongoing recovery from his vaccine injuries.

    Your son’s health is none of my business; what you choose to use for therapy for any condition is entirely between you and his pediatricians, at least until he reaches the age of majority, at which point it’s between him and his doctors and still none of my business. My purpose in commenting here is not to condemn you for your choices, even though you seem quite content to condemn commenters here for merely expressing their opinions about stem cell treatment, HBOT, and other unproven (and often untested) therapies for autism. This is a discussion about science and ethics. Matthew’s case was put out into the world for obvious promotional purposes; that renders it fair for discussion, wouldn’t you say?

    Good for you, but shame on you for going along with this evil blog that deceives parents (just like the news media).

    I’m a Christian and a patriot, so I say shame on you for calling this blog evil merely for disagreeing with you. Do you really think that if someone dares have a contrary opinion, they are evil and deceptive? Or are you merely so threatened by the possibility that you are wrong that you feel you must hate those who think differently? You could only feel so threatened if, on some level, you know that you are holding your position out of faith rather than evidence. After all, if you have evidence, what do you have to fear as far as being demonstrated wrong?

    BTW, the methylphenidate is not what got my daughter so far. It’s just helping her focus long enough to hear what the teachers are telling her. The improvements are something she’s doing herself, as she applies what she’s taught. I am enormously proud of her.

    At comment #36 you say:

    We all have to use our own inner instincts to determine what is true or false in this world. I know Daniel (Matthew’s Dad) personally and there is NO WAY he would be spending $17 K (or more) a treatment and going for a 5th stem cell treatment if he wasn’t seeing an ongoing significant improvement with each one. He went into major financial distress for these treatments.

    I’ve seen people suckered out of a lot more than $17,000 with far less evidence of any actual gain who persisted in claiming everything was fine — and who did it over and over again. Bright, intelligent people, too. Good people. So the fact that he’s a good man and a smart man with good intentions doesn’t mean his spending was wise. Of course, this makes it more tragic if he went into financial distress for no good reason.

    I think you’re wrong if you think that we must rely *exclusively* on our inner instincts to determine what is true or false. Our inner instincts can help us make a decision when we have nothing else to go on, but when there’s more to go on, we don’t have to rely on them alone. I know a gal who keeps falling for abusers. Her instincts tell her that this guy will be different, that he won’t hit her, that he’ll respect her. But anybody looking objectively at the situation can tell she’s probably wrong. It’s hard, sometimes, to be objective. It’s especially hard when your own child is involved.

    As far as my own son’s ongoing improvements……I have a hunch that I wouldn’t see a HUGE leap in his ability to communicate immediately following a mercury dump on fecal metal testing if this was just a “coincidence”.

    Hunches are all well and good, but have you tried looking into the literature (I mean actual studies, not just websites and blogs) to see if children with autism never make any improvements at all? Because there is in fact plenty of evidence that children with autism are capable of learning and do not remain static, frozen at a particular developmental stage. If you add up all of the many advances an autistic child can make, it is not only likely but *inevitable* that some will follow an event that could seem meaningful even if there is no actual relationship. That’s why you cannot tell from one child whether a therapy works; you have to try it on many, many children and see whether the therapy is followed by the same improvement more often than would be expected by chance alone.

    I’m not saying your lying or deluded; I’m not so low as to stoop to that. I’m just explaining why I don’t take your anecdote and say “oh my God, you’re right!” From my perspective, as far as I can tell, there are a number of alternate explanations and I’m not going to pick between them based simply on what I’d like to be true (my inner instinct, in other words), because I don’t have to.

  44. #44 Militant Agnostic
    December 16, 2010

    We all have to use our own inner instincts to determine what is true or false in this world.

    Our “inner instincts” tell us the world is flat and stationary while the sun goes around the earth.

    In the early days of aviation spins were deadly because “inner instincts” resulted in pilots doing the exact opposite of what was necessary for recovery. It was a scientific understanding of the cause that pointed to the correct way to regain control.

    The more complex the problem or phenomenon the more likely our “inner instincts” are wrong.

  45. #45 Calli Arcale
    December 16, 2010

    Militant Agnostic @ 37:

    But Calli, your daughter is not “truley recovered” and she probably puts sugar on her oatmeal as well.

    She HATES oatmeal. Even the sight of it. ;-) Actually, she’s never tried it — she flatly refuses. But she does like to put honey on her Cheerios. In her tea, she lately prefers Splenda. I think this is mostly because it’s got a good name.

  46. #46 Adam_ Y
    December 16, 2010

    As far as my own son’s ongoing improvements……I have a hunch that I wouldn’t see a HUGE leap in his ability to communicate immediately following a mercury dump on fecal metal testing if this was just a “coincidence”. Or, see him cross the midline for the first time EVER to wash his hands following adding supplements to facilitate left/right communication after heavy metal excretions. Considering that I do not take him for ANY OT, speech or ABA services…..I find that extremely hard to believe that it would all just happen on its own.

    Please don’t tell me you are giving him chetelation. You might accidentally kill him that way.

  47. #47 brian
    December 16, 2010

    @27

    Autism Mom wrote: “Why don’t you explain your concerns to our two *randomly* selected (in two different states that we have lived) Pediatricians (the almighty MD initials behind their names) that have FULLY supported us with our alternative biomed treatments AND witnessed my son’s ongoing recovery from his vaccine injuries[?]”

    Autism Mom, you should understand that physicians aren’t necessarily more resistant to woo than you are. As an example, it happens that my wife and I visited one of her colleagues shortly after the colleague’s son manifested intermittent seizures (not in proximity to vaccinations!), and found someone whom we regarded as an excellent clinician passing a handful of refrigerator magnets over her child’s body. Even good training and a quick mind can’t always negate nonsense—I suspect that you could also find physicians who happen to believe in special creation and a young earth, or who think that Obama is the antichrist who will lead us to Armageddon. The fact that you’ve found a couple of physicians who support your biomed views simply shows that physicians can be as wacky as anyone else. It’s useful to rely on the scientific method.

  48. #48 Calli Arcale
    December 16, 2010

    Mu @ 40:

    So, autism mom zombifies her daughter with Ritalin and chelates her son. Very compassionate.

    Actually, she never said her son takes Ritalin. It was me who said that my daughter takes it. Actually, to be more precise, she takes a close relative of it — dexmethylphenidate. Methylphenidate is a chiral molecule; the regular formulations contain both chiralities, while Focalin is purified dexmethylphenidate. Much more expensive, too, as it’s under patent protection currently, but it doesn’t cause as many side effects. We use the lowest effective dose, and less on weekends than on school days.

    It’s actually a myth that this “zombifies” children. In fact, it’s actually central nervous system stimulant related to amphetamines. Far from stupifying the child, it increases activity in the parts of the brain necessary for self-regulation.

    It is probably not really a coincidence that sleep-deprived people and highly stressed-out people will tend to exhibit ADHD-like symptoms.

  49. #49 Terrie
    December 16, 2010

    One of these days, I’m going to write my own testimonial. It will be about how, when my child was born, there was clearly something wrong with him. He had no control of his muscles, flailing randomly. He couldn’t speak, communicating only with cries and screams. He couldn’t control his bowels or bladder. He couldn’t even focus his eyes properly. The doctors kept insisting that there was nothing wrong with him. But, with my mommy warrior instinct, I just knew. So I did massive biomed interventions, and today, my kid has been recovered and can walk and talk like a normal child.

  50. #50 Autism Mom
    December 16, 2010

    Like I said, we have to use our inner instincts to determine what is true or false in this world. The fact that the “world” concludes that something is “scientific” means nothing to me….and I don’t need to defend my reasons for who I am. I could just as easily judge each of you for your decisions as you are judging me and others doing things different than what is what is “popular”. I’ve got news for you…..biomed treatments are very popular among “think outside the box” people and that is not going to change. In my opinion (since we are being so opinionated)….most MDs, speech therapists, OTs and ABA therapists are quacks…..because they are only bandaiding the situation of autism…..and ignoring the obvious facts that these kids are overwhelmed with virus, bacteria imbalances and heavy metals. SO, WE CAN AGREE TO DISAGREE….by the way Calli, I am a Christian…..and we all have our own Christian viewpoints….and I can tell you that my definition of Christianity and yours are totally different…..If you were a true Christian, would you really be so blind and following world views? I don’t know you, but that is the question I ask…..GOOD DAY ALL!

  51. #51 Chris
    December 16, 2010

    Autism Mom:

    Like I said, we have to use our inner instincts to determine what is true or false in this world. The fact that the “world” concludes that something is “scientific” means nothing to me.

    So is this planet flat, and does the sun actually travel around it?

  52. #52 Giliell
    December 16, 2010

    @#48 Terrie
    Your post is made of full win

    @#45 Callie
    I’m sorry that now you’Re not a true christian ™ anymore because you disagree with Autism Mom.
    You’re welcome to be out of the box, but now when you’re outside of her box ;)

  53. #53 Roadstergal
    December 16, 2010

    “ignoring the obvious facts that these kids are overwhelmed with virus, bacteria imbalances and heavy metals”

    I’m sorry, I must be dense, because it’s not obvious to me. Can you show me some studies? I’m a little slow – my instinct is defective, and I need to settle for data.

  54. #54 Autism Mom
    December 16, 2010

    For the record, I have NEVER used Ritalin on my son and never would. I have NEVER used chelation on my son either. AND I certainly DO NOT allow my son to use Splenda as Calli added….NOR WOULD I EVER!!! I have used 100% natural herbs and supplements for his detoxification and recovery…..END OF STORY!

  55. #55 Mu
    December 16, 2010

    overwhelmed with virus, bacteria imbalances and heavy metals
    All of these are testable, verifiable quantities. I very much love to read the write-ups on the analytical results, they might bring the knowledge of autism a huge step forward.
    Also, your heavy metal dump without chelation could be a genuine advance in the treatment of heavy metal poisoning, please tell us how you did that.

  56. #56 Chris
    December 16, 2010

    Autism Mom:

    Like I said, we have to use our inner instincts to determine what is true or false in this world. The fact that the “world” concludes that something is “scientific” means nothing to me.

    Followed by:

    I have used 100% natural herbs and supplements for his detoxification and recovery.

    What kind of natural herbs? Foxglove? Castor oil plant? Oleander? Larkspur? Angel’s trumpet? Henbane?

  57. #57 RJaye
    December 16, 2010

    Oooh, I saw this early this morning when no-one had commented. I always find the fallout interesting.

    Autism Mom, have you ever checked out adults with autism? We are out there, and us oldies (50 yo and up) were diagnosed under the stricter criteria. We didn’t have the altmed OR the current autism treatment, and it’s amazing how many of us have survived. Some of us quite well.

    However, in my anecdotal experience, people with autism are all over the map. My parents were told to put me into an institution. I suffered abuse in the school system and from my family. I survived, but I wish there had been the understanding and supports like occupational and physical therapies (such as it currently is) when I was a child. Life would have been so much easier.

    But these bizarre, unproven treatments of autistic children scare me. They are dangerous, and the thought of someone like me but small having to endure them is terrible. Parenting is not an automatic “I know what’s best” card-dang my own parents were proof of that-and people like Orac pointing out the dangers of such treatment and the manipulation of statements and events to support such treatments is downright malpractice and fraud. To be deceptive (to put it mildly) is to lure people to a point of view that is WRONG.

    If these treatments work, then let’s put them to the test. If they work they need to be heralded and used. But put them to the test.

    Otherwise, it’s all pie in the sky, and meaningless.

  58. #58 Adam_Y
    December 16, 2010

    Also, your heavy metal dump without chelation could be a genuine advance in the treatment of heavy metal poisoning, please tell us how you did that.

    How much you wanna bet the “natural herbs and supplements” that she is using is the same chetelates that the Greers were selling at one point.

  59. #59 trrll
    December 16, 2010

    We all have to use our own inner instincts to determine what is true or false in this world. I know Daniel (Matthew’s Dad) personally and there is NO WAY he would be spending $17 K (or more) a treatment and going for a 5th stem cell treatment if he wasn’t seeing an ongoing significant improvement with each one. He went into major financial distress for these treatments.

    I’m sure that the parents of the over 2500 children who were treated with secretin were following their own inner instincts to determine whether there was “significant improvement.” Yet study after study found that secretin was no better than placebo for autistic children. Autistic children treated with secretin did indeed improve; it’s just that the children treated with with placebo improved just as much.

    One of the things the study of science teaches us is that our “inner instincts” are designed to deal with the situations routinely encountered in daily life, but they can fail catastrophically in exceptional situations. Anybody who has spent any time looking at optical illusions knows this: Your “inner instincts” tell you that one bar is longer than the other, yet a scientific approach–actual measurement–will show you that it is false. Many of the parents who treated their children with secretin were absolutely convinced that the improvement they saw would not have occurred without the treatment, yet actual measurement showed them to be victims of a cognitive illusion–confirmation bias.

    Fortunately, secretin turned out to be pretty much harmless, so the parents who paid thousands of dollars for secretin treatments were deprived only of their money. It is unlikely that the parents paying for stem cell treatments will be so lucky. The chances are high that at least some of them are not only losing their money but condemning their children–who would have almost certainly have shown as much recovery without the treatment–to a nasty death from cancer.

  60. #60 Adam_Y
    December 16, 2010

    Fortunately, secretin turned out to be pretty much harmless, so the parents who paid thousands of dollars for secretin treatments were deprived only of their money. It is unlikely that the parents paying for stem cell treatments will be so lucky. The chances are high that at least some of them are not only losing their money but condemning their children–who would have almost certainly have shown as much recovery without the treatment–to a nasty death from cancer.

    I agree. Some of the most disturbing stories of medical maladies came from the biomed movement. Kids dying because their hearts stopped. Kids dying because the hyperbaric chamber blew up. The Greer chetelate/”supplement” causing bloody stool. Hell in your case cancer is just one of the many complications that could arise. Lets face how good can the standard of medical practice be in the areas that allow this sort of scam to go on.

  61. #61 colbey.davidsson
    December 16, 2010

    I’m not buying that Autism mom isn’t just a troll, stupid that hot would have burned down her neighborhood by now.

  62. #62 Liz Ditz
    December 16, 2010

    colbey.davidsson I think Autism Mom is not a troll. I know I’ve seen her combination of sentence fragments….punctuated with ellipses and ALL CAPS elsewhere proclaiming that recovery from autism is possible through biomed.

  63. #63 The Christian Cynic
    December 16, 2010

    Terrie@49: That is a hilarious “testimonial.” I would love to see some credulous wooster try to use that.

    Calli Arcale: I don’t have anything specific to comment on that you’ve said in your exchange with Autism Mom, but I just wanted to mention that you have earned a great deal of respect from me for the levelheadedness you show in your comments around SB – even more than the average level of respect I have for another parent of a child with autism. (I have two preschool-aged boys with autism.) Your daughter is very fortunate to have such a reasonable and caring parent.

    (You may now resume your regularly scheduled [on-topic] comments.)

  64. #64 Matthew Cline
    December 16, 2010

    What about those people who have not tried biomed treatments for their children, yet their children improved and lost their diagnosis?

    Possible answer: those children never had autism in the first place, but were misdiagnosed as having autism.

    Second possible answer: there’s a difference between normal autism and “profound” autism. Normal autism might go away without biomed, but profound autism is only treatable with biomed.

  65. #65 Joseph
    December 16, 2010

    we have to use our inner instincts to determine what is true or false in this world

    That’s (primarily) where you’re wrong, Autism Mom. Reality doesn’t give a damn about your “inner instincts.” It’s actually quite a bit pretentious to think your inner instincts ought to be correct. And it’s profoundly arrogant to presume you understand autism outcomes when you clearly are not versed in the subject matter. How many papers on the adult outcome of autistics have you read?

  66. #66 wink
    December 16, 2010

    It’s pointed out that the hyperbaric oxygen chamber costs at least $17,000 (although in this article Faiella states that the hyperbaric chamber cost him $21,000), and that each stem cell “treatment” costs the same. Add that up, and Faiella has already spent $89,000 on a hyperbaric oxygen chamber and four stem cell treatments, and he’s ready to drop another $17,000 on a fifth one. That’s more than a cool $100,000 thus far. True, the article does mention that Matthew’s doctor doesn’t think the stem cell treatments work, but overall the story gives the impression of the heroic father fighting against an uncaring medical establishment

    It is even worse than that, according to another media story published a year and a half ago, after the 3rd treatment the Faiellas were already in $110,000 of credit card debt (and without jobs):

    “Daniel, who works as a bellman at a hotel near Universal Studios, does not have a job lined up, but he is willing to gamble.

    “I feel we have to get radical,” said Daniel, 34.

    Some might say the Faiellas are already radical. The couple have embraced treatments that many in the autism community consider controversial. They have mortgaged their home and are $110,000 in credit-card debt — money spent on unconventional treatments …”

    http://articles.orlandosentinel.com/2009-07-18/news/autisticmove_1_autism-matthew-central-florida

    I can’t fathom what the interest on that amount of cc debt is annually, but in addition to the risks these invasive treatments pose for the child, the financial devastation for the family will certainly limit their ability to provide resources for him in the future.

  67. #67 Liz Ditz
    December 16, 2010

    from Matthew Cline @64, who AIR usually makes more sense than this:

    What about those people who have not tried biomed treatments for their children, yet their children improved and lost their diagnosis?

    Possible answer: those children never had autism in the first place, but were misdiagnosed as having autism.

    Second possible answer: there’s a difference between normal autism and “profound” autism. Normal autism might go away without biomed, but profound autism is only treatable with biomed.

    Would you be so good as to tell us how often autism is “misdiagnosed” and the correct diagnoses those children had? Cite your sources.

    Would you be so good as to define “normal autism”? Cite your sources.

    Would you be so good as to define “profound autism”? Cite your sources.

    While you are at it, perhaps you could define “biomed”, and explain how it is the only effective treatment for “profound autism”.

  68. #68 Militant Agnostic
    December 16, 2010

    The couple have embraced treatments that many in the autism community consider controversial.

    “Controversial” is a euphemism for ludicrous or pehrhaps batshit insane.

  69. #69 Autism Mom
    December 16, 2010

    Ditto Joseph….LOL!!! Humor me some more! I love the “pot calling the kettle black scenarios”….hehehe!

    Frankly, I don’t (and none of us other biomed parents) owe you any explanations for my reasons or opinions….LOL!!!!

  70. #70 maydijo
    December 16, 2010

    Autism Mom says: Frankly, I don’t (and none of us other biomed parents) owe you any explanations for my reasons or opinions….LOL!!!!

    Except . . . You kinda do. If you are saying that these treatments actually *work*, you do have to back that up with something. If you can’t back it up, either you’re fooling yourself (because the treatments don’t work) or you’re just the meanest person in the world (because they *do* work and you’re depriving the rest of us of your wisdom).

    It’s all well and good playing the ‘victim’ card – “Poor me, you’re all so mean to me” – but you’ve given absolutely no indication of what treatments you’re using, what they’ve done, etc. etc. All you’ve done is come in here and say, “You’re all idiots and stooges and I know better.” But you’re either not willing or not able to back it up, even with the barest of ancedotes, let alone with anything that can actually be studied or measured.

  71. #71 Calli Arcale
    December 16, 2010

    Awww, thanks Christian Cynic. Coming from you, that means a lot.

  72. #72 Jake Crosby
    December 16, 2010

    And yet, none of the old forum posts actually contradict the article.

  73. #73 Calli Arcale
    December 16, 2010

    AUtism Mom @ 50:

    Like I said, we have to use our inner instincts to determine what is true or false in this world. The fact that the “world” concludes that something is “scientific” means nothing to me….and I don’t need to defend my reasons for who I am.

    THat is most certainly true, that you do not need to defend your reasons. At least, not if you don’t intend to convince anyone of anything other than being ignorant and satisfied with that, but if that’s the case, your posts don’t acheive much.

    “Scientific” doesn’t actually mean “the world agrees”. It means “arrived at through a systematic method designed to reduce bias”. In fact, many things the world agrees about are not scientific, or are believed for unscientific reasons. I think you sell yourself short when you say you have to use your inner instincts to decide what is true or false, becuase “scientific” means nothing to you. You seem to be saying that your choices are either to go on your gut or just follow the lemmings. Those are not actually all of the options.

    The third option is to use critical thinking, and I highly recommend it. It’s harder work than going off of gut feelings or popularity, but it’s not *that* hard, once you get used to it, and it’s well worth it. Cultivate a sense of curiosity; look for reasons things might not be as you expect; think of ways to test them. “If Treatment X really works, then there should be testimonials to that effect” is a start, but you can go further — you can demand evidence. Most treatments don’t work; that’s something that medical research has unfortunately proven all too well. There’s no reason to expect alternative medicine to have a better track record than mainstream medicine, so it’s fair to demand evidence. “If Treatment X really works, they ought to have studies to prove it and prove that it’s reasonably safe” is a good next step. The following steps would involve thinking how they could be wrong and trying to test those possibilities. “Maybe these were cases of spontaneous improvement; did they check the recovery rate against a control group to see if more kids got better with treatment than without?”

    That’s hypothetical, but I’m sure you get the idea. Don’t give up; you are smart and you do have the ability to test some of these claims. You don’t just have to go by whether or not the proponent has an open honest face.

    by the way Calli, I am a Christian…..and we all have our own Christian viewpoints….and I can tell you that my definition of Christianity and yours are totally different…..If you were a true Christian, would you really be so blind and following world views? I don’t know you, but that is the question I ask…..GOOD DAY ALL!

    *chuckles* You seem quite sure of my theology, despite the fact that I didn’t talk much about it. ;-) Sure enough, anyway, to imply that I’m not a true Christian (an act which contradict’s Jesus’ teachings — one must never judge another person’s righteousness, as that is for God and God alone to do). Why are you so sure that I am the one who is blind? You yourself have admitted you do not investigate to see whether something is true; instead of using your eyes, you use your inner instincts. Do your inner instincts tell you that the majority is nearly always wrong, and so therefore if a view is revolutionary, it must be correct?

    That’s dangerous thinking, but very common and very human — it seems people unconsciously like being part of a minority view, a chosen few who knows The Truth. Just because a view is controversial doesn’t mean that it’s wrong, but it also doesn’t mean that it’s right. Always be wary of things which conform to your expectations — not because it’s trying to trick you, but because it can be hard to distinguish between what is true and what we deeply wish to be true.

    @54:

    For the record, I have NEVER used Ritalin on my son and never would. I have NEVER used chelation on my son either. AND I certainly DO NOT allow my son to use Splenda as Calli added….NOR WOULD I EVER!!! I have used 100% natural herbs and supplements for his detoxification and recovery…..END OF STORY!

    Ritalin is only effective in limited circumstances; in particular, if the child has attention problems, it can be beneficial. It’s also useful for narcolepsy. Otherwise, it’s useless, and it troubles me that it is prescribed so readily to children without diagnosed attention problems. It’s even been tried as an antidepressant, and that’s terribly wrongheaded. So even as someone whose daughter takes it — and actually, I took it myself as a child — I do not endorse its widespread use. It has a narrow application, and because of the risks of side effects should not be used casually.

  74. #74 Prometheus
    December 16, 2010

    Autism Mom comes out with a couple of real howlers. Howler number one:

    “The fact that the “world” concludes that something is “scientific” means nothing to me…”

    Well, that settles that – “Autism Mom” isn’t interested in what’s true as long as she has her beliefs. “Data?!? We don’t need no steenking data!” That also explains why she’s bothering to comment on this ‘blog – religions (like her beliefs about autism) thrive on conflict with “non-believers”.

    Howler number two:

    “…and I don’t need to defend my reasons for who I am. I could just as easily judge each of you for your decisions as you are judging me and others doing things different than what is what is ‘popular’.”

    Funny, I didn’t see anyone ask her to defend who she is. A couple of people asked her to support her claims, but now that we know it’s all about “faith” with her, there isn’t any need for data (‘cuz now we know there isn’t any).

    Howler the third:

    “I’ve got news for you…..biomed treatments are very popular among “think outside the box” people and that is not going to change.”

    Was that “think outside the box” or “think inside a different box”? Real “think outside the box” people are always looking for data to support their “outside the box” ideas. Folks who accept “outside the box” ideas without bothering to check to see if they’re correct have a different name: “suckers”.

    That sort of “outside the box” thinking leads people to send their bank account information to Nigerian bankers who offer them a million or so in cash for “facilitating” a money transfer. It’s also the sort of “outside the box” thinking that Bernie Madoff was famous for.

    Finally, whether a medical therapy is “popular” or not (especially with that sort of “outside the box” thinkers) is completely irrelevant. How many times do people have to be reminded that bleeding and purging were extremely popular remedies for hundreds of years, even among the intelligensia of the time?

    Secretin – in its time – was touted to be “effective in over 75% of children with autism” (and was extremely “popular”) until it was eventually shown (by a company that manufactured it) to be no better than placebo (i.e. completely ineffective). It’s still “popular” and also still ineffective.

    If people like “Autism Mom” feel that the popularity of a treatment is any indication of whether it works or not, they are destined for a life of disappointment.

    Prometheus

  75. #75 Autism Mom
    December 16, 2010

    Here is just ONE of the reasons “scientific” evidence means NOTHING to me:

    http://www.americanchronicle.com/articles/view/144727

    Here is just ONE other reason “scientific” evidence means zilch squat to me:

    http://www.naturalnews.com/028194_Scott_Reuben_research_fraud.html

    As far as you that want to know precisely what I’m doing for my son, we have the world wide web…..you can research the biomed protocols and see what is working for different children just as well as I can. I will not comment on “which” protocol I do b/c I do not want to hear the critics or open a can of worms. It is really irrelevant anyway since different ones have worked for different children to recovery. It is not worth my precious time to get in an extended debate…..so many of you are sadly brainwashed.

  76. #76 wink
    December 16, 2010

    Autism Mom said:

    Here is just ONE other reason “scientific” evidence means zilch squat to me:
    http://www.naturalnews.com/028194_Scott_Reuben_research_fraud.html

    Autism Mom, you treat your child according to info you find in places like Natural News?

    Natural News (Mike Adams) is the online supp peddler who claims that Farrah Fawcett and Patrick Swayze would be alive today if they had only followed his supplement advice, and that chemo killed them – as it did Elizabeth Edwards, and that there is a cure for cancer (he knows what it is):

    http://www.naturalnews.com/030673_Elizabeth_Edwards_chemotherapy.html

    I hope for the sake of your child that a social worker has been assigned to your case, and that should your children ever contract a serious disease, that the responsibility for treatment decisions is awarded to a competent guardian.

  77. #77 Adam_Y
    December 16, 2010

    As far as you that want to know precisely what I’m doing for my son, we have the world wide web…..you can research the biomed protocols and see what is working for different children just as well as I can.

    You never did actually respond to the fact that a few kids died due to the biomed protocol.

  78. #78 Igor
    December 17, 2010

    It is said that science will dehumanize people and turn them into numbers. That is false: tragically false. Look for yourself. This is the concentration camp and crematorium at Auschwitz. This is where people were turned into numbers. Into this pond were flushed the ashes of four million people. And that was not done by gas. It was done by arrogance. It was done by dogma. It was done by ignorance. When people believe that they have absolute knowledge, with no test in realitythis is how they behave. This is what men do when they aspire to the knowledge of gods. Science is a very human form of knowledge. We are always at the brink of the known; we always feel forward for what is to be hoped. Every judgment in science stands on the edge of error, and is personal. Science is a tribute to what we can know although we are fallible. In the end, the words were said by Oliver Cromwell: ‘I beseech you, in the bowels of Christ: Think it possible you may be mistaken.’ We have to cure ourselves of the itch for absolute knowledge and power. We have to close the distance between the push-button order and the human act. We have to touch people.

    That’s all I got. BTW, what’s with the quotation narcs by scientific? Is it that you don’t like scientific evidence or that you don’t think the evidence was scientific?

  79. #79 Autism Mom
    December 17, 2010

    THERE ARE SO MANY BLATANT LIARS ON THIS THREAD…..WAKE UP PEOPLE!

  80. #80 Chris
    December 17, 2010

    Autism Mom:

    THERE ARE SO MANY BLATANT LIARS ON THIS THREAD…..WAKE UP PEOPLE!

    And yet you are willing to listen to the likes of Christina England (who is plagiarizing ten year old articles, a recent one goes on about the DTP vaccine, which hasn’t been used for a decade), and Mike Adams who thinks an article on day length cycles on mice is about astrology.

    Igor, you pulled a Godwin, which means you automatically lose.

  81. #81 Igor
    December 17, 2010

    Chris, It’s not my quote. Sorry I meant to give credit. This is from the Ascent of Man as narrated by Jacob Boronowski.

  82. #82 Chris
    December 17, 2010

    Okay, now it makes it a bit better sense. Though next time give attribute to the quote, and explain what you mean by it. It is still on odd thing to quote in this comment thread.

  83. #83 Chris
    December 17, 2010

    Jake Crosby:

    And yet, none of the old forum posts actually contradict the article.

    You have to actually click on the thumbnail of the screen capture to read the old posts on LBRB.

  84. #84 Adenocarcinoma Of The Colon
    December 17, 2010

    An excellent and much appreciated blog.

  85. #85 Igor
    December 17, 2010

    I thought I cited the proper source, but It’s late and so it became a glaring omission on my part. As to the explanation, I didn’t feel like it required one, I simply like the quote and was too lazy to engage in a protracted discussion with Autism Mom about the evils of science.

  86. #86 Chris
    December 17, 2010

    Okay, I see. And it makes more sense when I read it a bit closer. Sorry about my confusion (yes, it is late, and I have just been to a high school concert). But I think it may be lost on Autism Mom.

  87. #87 Chris
    December 17, 2010

    Also I am going to blame Ben Stein for declaring that the concentration camps were Darwin’s fault! ;-)

  88. #88 novalox
    December 17, 2010

    @79

    Because typing in all capital letters make you truthful, right?

    Where is your evidence? You haven’t posted anything close to it yet. I’ll wait, but my guess is I’ll be waiting for a while…

  89. #89 Liz Ditz
    December 17, 2010

    I recant my position at comment #62. I now think that “Autism Mom” is possibly a troll, and possibly a number of people posting under the same ‘nym.

  90. #90 Giliell
    December 17, 2010

    @Autism Mom
    So you found 2 alleged cases of fraud.
    Sad but true, it happens. Wherever people are involved you run risk of fraud. But here’s the difference between real science and “alternative science”: Science has to work.
    Yes, you can fake a study. And another one. And you can get away with it for some time. But sooner or later, people who are trying to reproduce your results, people trying to use your results for further studies will find that there are some problems and you will be exposed.
    And you will be exposed by OTHER scientists.
    Yes, all of that will take some time and it sadly had dire consequences for innocent people, but once something is exposed it is usually corrected and the rest of it is put in the bin.
    And there’s “alternative science/medicine” which doesn’t have to come up with data and studies in the first place, so no need to fake them. And no matter whether it’s been proven to be woo, it just goes on.
    Tell me, when did one “alternative practitioner” ever expose another one as fraud? What “alternative medicine” disappeared after it has been proven to be fraud? And when did “alternative scientists” ever expose a real scientist as a fraudster (I mean really, not just by screaming or typing all in caps)?

  91. #91 Matthew Cline
    December 17, 2010

    @Lizi Ditz:

    I wasn’t saying what I believe, just speculating on answers that bio-med supporters might give. I should have made that clear.

  92. #92 Giliell
    December 17, 2010

    Now about overdiagnosing autism or AD(H)D
    I think this does happen and is likely to happen if somebody who isn’t specialized in that area (i.e. your ordinary pediatrician) is allowed to make such a diagnosis.
    My sister used to work in a neuropediatry ward and the frequently had cases where the sceptical parents insisted on a clinical evaluation by experts. And in a lot of cases they dismissed the diagnosis. Sometimes the kid had a different developmental issue or disorder, sometimes the family needed behavioural training, sometimes the kids just had their little pecularities.
    But of course those kids were just the top of the iceberg, not every kid gets seen by specialists right away but a lot get some treatment first, especially in case of alleged AD(H)D where sadly Ritalin is often handed out as if it were a food supplement.
    Also the whole process is a bit prone to get biased results. Often the people coming up with the idea that a child might be autistic or have AD(H)D are teachers who have only a limited knowledge. If then parents go to their ped, there’s already some bias. The doctor, not maliciously but because we’re all just human, will look for symptoms of autism/AD(H)D and will not give the kid an unbiased evaluation. And often they can’t because they can hardly spend 48 hours with said kid.
    And this is where things can go wrong: Instead of sending the kid to an expert, at least here in Germany it is possible for the pediatrician to prescribe medication and therapies without the consultation of an expert.
    I think that these mechanisms should be critically evaluated so that kids don’t get put into boxes labelled “autistic” “AD(H)D” and so on.
    Said practise doesn’t only hurt those wrongly diagnosed but also those correctly diagnosed because in the public opinion those diagnosis become “made up” which everybody who has some experience with those kids knows is wrong. But if people don’t believe that a kid has serious issues that are neither their fault nor that of their parents, those kids will have it much harder.

  93. #93 redacted
    December 17, 2010

    @80

    But according to her standard of evidence (her gut) she is right and your disagreement with her makes you wrong and therefore a liar.

    A center of reality revolving around how bad the burritos were last night…

  94. #94 Todd W.
    December 17, 2010

    @Autism Mom

    I’m not judging you, though I am still curious how you reconcile the discrepancies in the Faiella’s stories.

  95. #95 Joseph
    December 17, 2010

    Frankly, I don’t (and none of us other biomed parents) owe you any explanations for my reasons or opinions….LOL!!!!

    @Autism Mom: That would be true in most cases. However, your very first comment in this thread was:

    Hmmmm…..modern medicine advocates will go to any extreme ridiculous measures to discredite alternative treatments….*NOT SHOCKING* at all to a mom who has been through a very similiar situation as Matthew’s Dad minus the stem cells…..Alternative biomedical treatments are the ONLY way to get a child truley recovered….what is sad is the gullable parents who are misled by these ridiculous blogs trying aimlessly to discredit alternative biomed…….KEEP UP YOUR BLOGGING….IT IS RATHER AMUSING TO US PARENTS THAT KNOW WHAT YOUR ALL ABOUT….LOL

    You basically made a number of unsupported accusations, and completely baseless assertions. Either justify your claims, or we’ll continue to point out that they are obviously made-up hooey.

  96. #96 Sauceress
    December 17, 2010

    I will not comment on “which” protocol I do b/c I do not want to hear the critics….

    Tunnel vision glasses on and fingers in ears singing …lalalalalalalalalala.
    Shouting “I believe…I really believe” makes it so?
    No Autism Mom, willful ignorance will not make it so!

  97. #97 Militant Agnostic
    December 17, 2010

    What “alternative medicine” disappeared after it has been proven to be fraud? And when did “alternative scientists” ever expose a real scientist as a fraudster (I mean really, not just by screaming or typing all in caps)?

    There actually has been one incident of an alt-med practitioner exposing an alt-med practice as bogus. Orac has mentioned a naturopath who did a follow op on Gerson’s cases and discovered that nearly all of them had either died of cancer or had a recurrence. However this seems to have had almost no effect on the popularity of Gerson therapy among the alties.

  98. #98 Calli Arcale
    December 17, 2010

    Autism Mom:

    THERE ARE SO MANY BLATANT LIARS ON THIS THREAD…..WAKE UP PEOPLE!

    Is that really all you’ve got, Autism Mom? I thought this was something you might want to talk about, sort of like Jen (not Jen in TX, a different Jen) whom I’ve had some very good conversations with in the past. But now it seems all you want to do is shout unsupported and undirected accusations at random.

    Disappointing, but that’s entirely up to you. But I would think that if you actually cared about this stuff, you’d say who you felt was mistaken and what they said which was wrong. Nobody’s expecting you to share precisely what you’re doing with your son; frankly, as I said before, it’s none of our business. But if you’re going to make provocative statements about various protocols, then you can expect people to respond. (Things are pretty open here, and free speech goes both ways.) And if you choose not to clarify or defend, you can also expect people to conclude that you don’t really have a leg to stand on.

    Whether or not that troubles you is your decision, of course.

  99. #99 Joseph
    December 17, 2010

    What Autism Mom refuses to admit is that the blatant liars are the Faiellas, as the evidence clearly demonstrates.

  100. #100 Photalistic
    December 17, 2010

    I wish there was a vaccine for belief infused sight. People too often see what they want to irregardless of facts or the annoyance of reality because belief puts a shade over the eyes. It is worse then rose colored glasses. The belief one kills.

  101. #101 Dangerous Bacon
    December 17, 2010

    Autism Mom: “I will not comment on “which” protocol I do b/c I do not want to hear the critics or open a can of worms.”

    Makes sense. You might find out you’re wasting resources better used on proven therapy, or that the “protocol” is putting your child at risk. Discovering this would be a blow to your pride, even if it ultimately helped your child.

    It all depends on what’s most important to you.

  102. #102 jre
    December 17, 2010

    Just what part of

    Love, suspense, plant and equipment, marine, non-infinite sea of the coast.

    don’t you understand?

  103. #103 a-non
    December 18, 2010

    The one thing I’ve noticed about the pro-disease trolls is that if you prod them hard enough, they’ll resort to mindless shouting and name-calling. Surprised that “Autism Mom” made it as long as she did before snapping.

  104. #104 g724
    December 18, 2010

    Re. optical illusions: I find them useful for training & practice at recognizing the subjective processes that occur with perceptual and cognitive errors, and then finding ways to use attention and introspection to offset the illusory impression and perceive the images more accurately. This becomes part of a general method for detecting and seeking to correct biases, cognitive laziness, etc.

    For example: Look at the picture. Observe the illusion as intended, e.g. “the lines appear to be curved.” Recognize the emotional state that occurs in response, e.g. “enjoying watching the lines curve,” or “annoyed that the curves appear to vary depending on where one looks,” etc. Note the correct situation: “the lines are straight, parallel, and of the same length.” Look for the elements of perception and cognition that produced the illusory observation, and the various emotional and cognitive threads that follow from these. Then try to use selective attention to alter the way the image is processed, seeking a more accurate impression of the elements of the image: such as looking at the picture and seeing the lines as straight and parallel. Finally, make note of the way in which more accurate perception was achieved, and mark that as an analogy or metaphor that can be applied to other perceptual and cognitive processes.

    Just as mindfulness meditation can teach a person to recognize when their emotional state is affecting their judgement (this can occur far more subtly than expected), contemplating optical and other types of illusions can teach a person to recognize the ways in which habitual thinking can affect perception.

    If this sort of thing (generalization: recognizing and offsetting for perceptual and related types of errors) was taught in elementary school, kids might grow up with an increased degree of real skepticism and a more questioning attitude.

  105. #105 storkdok
    December 18, 2010

    Most of us parents of autistics do not believe or practice the non-science based medicine in the DAN! protocol. Autism Mom speaks for a minority of parents. She certainly doesn’t speak for me.

  106. #106 David N. Andrews M. Ed., C. P. S. E.
    December 18, 2010

    g724: “Just as mindfulness meditation can teach a person to recognize when their emotional state is affecting their judgement (this can occur far more subtly than expected), contemplating optical and other types of illusions can teach a person to recognize the ways in which habitual thinking can affect perception.

    If this sort of thing (generalization: recognizing and offsetting for perceptual and related types of errors) was taught in elementary school, kids might grow up with an increased degree of real skepticism and a more questioning attitude.”

    I think you’re probably right there. Would be interesting to study that idea in practice. You in a position to? Because, if so, then that’s a good use of cognitive psychology…

    Hoping to see a study of that!

  107. #107 David N. Andrews M. Ed., C. P. S. E.
    December 18, 2010

    storkdok: “Most of us parents of autistics do not believe or practice the non-science based medicine in the DAN! protocol. Autism Mom speaks for a minority of parents. She certainly doesn’t speak for me.”

    I’m with storkdok on that issue!

  108. #108 Agashem
    December 18, 2010

    I agree with storkdok as well. Hurrah for us!

  109. #109 Omri
    December 18, 2010

    “We all have to use our own inner instincts to determine what is true or false in this world. I know Daniel (Matthew’s Dad) personally and there is NO WAY he would be spending $17 K (or more) a treatment and going for a 5th stem cell treatment if he wasn’t seeing an ongoing significant improvement with each one. He went into major financial distress for these treatments”

    Uh, no, we don’t. Our inner instincts are fallible, and particularly vulnerable to manipulation by charlattans. Parents of an autistic child have a duty to keep those instincts under control. Matthew’s parents have put their son at risk of horrendous iatrogenic injuries from the stem cell treatments. Those cells can form tumors, plaques, and carry disease from their original donors. And, the oxygen chambers they use are a major fire hazard. There is good reason why mainstream medicine will not use those machines except for re-compressing and then gradually decompressing victims of the bends.

    All because of their “instincts.”

    Ironically, it is a lot easier for an autistic person to look at these things rationally than for the normal parents of an autistic parents. I have to wonder if the frustrations of raising an autistic child cause the parents and the child to fall into a dynamic where the parents become more and more emotional and instinctive when faced with a child who will not and cannot respond normally to them.

  110. #110 titmouse
    December 18, 2010

    I was troubled by the final paragraph, quoted above, in which Lehrer seems to be implying, if not outright arguing, that science is nothing more than competing narratives between which scientists must choose, each of them not particularly well supported by data.

    This same message appears in the latest New Humanist.

    It’s ridiculous. All of it. God, Allah, Elohim, Mithras, Zeus, atoms, quarks, the Higgs boson, genes, gravity, germs: all bollocks. All, to put it another way, stories. We may think that supersymmetry or, even more scarily, M-theory are somehow truer or more real but that’s because most of us can’t see that mathematics is another language for telling stories in – indeed, stories in which the most important thing, just as in Athenian tragedy, is not that they are necessarily true but that they are internally coherent.

    Did someone start a postmodern stealth marketing campaign?

  111. #111 titmouse
    December 18, 2010

    D’oh! Wrong thread.

  112. #112 titmouse
    December 18, 2010

    We all have to use our own inner instincts to determine what is true or false in this world.

    OMG, perhaps not in the wrong thread after all.

  113. #113 Prometheus
    December 19, 2010

    Autism Mom (#36) opines:

    “We all have to use our own inner instincts to determine what is true or false in this world.”

    That’s exactly what quacks and charlatians tell their marks – it makes them less likely to ask embarrassing questions, like “What data do you have that this really works?”

    She continues:

    “I know Daniel (Matthew’s Dad) personally and there is NO WAY he would be spending $17 K (or more) a treatment and going for a 5th stem cell treatment if he wasn’t seeing an ongoing significant improvement with each one.”

    Yet, strangely enough, even an inert placebo has been shown to give “ongoing significant improvement” in autism (see: Repligen secretin study). It’s a combination of wishful thinking and the erratic development seen in autistic children (autism – again – being a syndrome of developmental delay, not developmental stasis). Of course, having spent over $17,000 a treatment, Matthew’s parents have even more psychological pressure to believe that they are seeing “ongoing significant improvement”.

    Once you open your mind wide enough to believe that undifferentiated mesenchymal stem cells (if there are any stem cells injected) are capable of “curing” autism, there is no limit to what you can believe in.

    Prometheus

  114. #114 LW
    December 19, 2010

    People’s inner instincts told them that frostbite should be treated by rubbing the affected part with snow, that burns should be treated by rubbing with oil, and that cats and dogs cause bubonic plague and should be killed during an outbreak. In all of these cases, people’s inner instincts were wrong and in fact their actions in accordance with their instincts just made things worse.

    And of course we must not forget the diabetic in England whose inner instincts told him that he didn’t need treatment for his infected foot, even as it turned black and began to stink. Inner instincts didn’t keep him of dying of gangrene.

    Inner instincts are often not all that accurate.

  115. #115 Jay Gordon
    December 19, 2010

    Excellent essay, David and very good discussion, too. N=1 makes bad science.

    Best,

    Jay

  116. #116 Joseph
    December 19, 2010

    Did Dr. Jay just spam the thread, or am I too cynical to think that?

  117. #117 Dangerous Bacon
    December 19, 2010

    I’d be alarmed if Jay Gordon congratulated me on recognizing bad science. It’s like receiving praise from the Taliban for one’s religious tolerance.

  118. #118 Mephistopheles O'Brien
    December 20, 2010

    It’s tacky to give someone grief when they write to say “nice job”.

    Just sayin’.

  119. #119 titmouse
    December 20, 2010

    “I know Daniel (Matthew’s Dad) personally and there is NO WAY he would be spending $17 K (or more) a treatment and going for a 5th stem cell treatment if he wasn’t seeing an ongoing significant improvement with each one.”

    I’m too lazy to Google, but I seem to recall a few studies showing that the more money people have sunk into some item or service, the harder it is for them to recognize when its not helping. Ergo, Scientology.

  120. #120 jre
    December 21, 2010

    I’ll second that, Meph. If all we can do is react to someone’s image, rather than to what he’s saying right now, then we might as well prop our cardboard cutouts at the table and let them argue with each other.
    Of course, then the real us would be free to go off and have a beer …

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