The Peril of Parent Testimony – Stem Cell Treatment for Autism

15 Dec

It usually begins naively enough – the parent of a newly-diagnosed child launches a search into the Wild, Wild West of the World Wide Web, searching for help and hope for a diagnosis they are still struggling to grasp.

Soon parents may find themselves on internet support forums and in email groups, surrounded by parents promoting everything from the plausibly helpful to the fantastically impossible.

Some parents may become part of a new peer group – an online pack of believers, where pack status is determined by the number of experimental treatments employed and the claims made regarding these treatments. Alpha pack status is achieved when a parent claims to have “recovered” or “almost recovered” their child, often by applying an arbitrary definition of “recovered,” or even an extrapolated percentage of recovery. Every developmental tick is attributed to the most recent treatment addition, adverse reactions are attributed to healing, and anyone questioning the pack interpretation is considered an intruder in the anthill.

The appeal of these claims is obvious. The truth, however, may be another matter. With autism, there are always newcomers to the ranks of the recently-diagnosed, whose parents are unfamiliar with the histories of popularized treatments, fantastic claims, and failed treatment prophecies.

Eventually, even well-meaning parents may be sucked into the vortex of upping the treatment ante and believing their own fantastic claims, and may remember history differently in order to rationalize and justify the invasive and risky treatments their children are forced to endure. The pursuit of treatment itself becomes a drug — impairing objectivity, dulling recollection, and often, even obscuring the truth.

And so it goes with the Faiella family. Daniel and Ruth frequently thrust their son, Matthew, now 10, into the media to promote hyperbaric and stem-cell treatment for autism, and they have done so yet again, in Local Father Says Controversial Treatments For Autism Work. Matthew has previously endured four stem cell transplants, the fourth not only involving lumbar puncture, according to Daniel Faiella’s blog, but also a frightening experience with anesthesia in a developing central American country.

Unfortunately, Mr. Faiella later removed his harrowing account of anesthesia and the stem cell lumbar puncture from his blog, and though left an entry stating that he still “believes” in the clinic, along with plenty of graphic pictures of his son undergoing this procedure. The search results for his original post concerning Matthew’s dangerous experience are all that now remain:

Aug 10, 2010 … I would never do a spinal stem cell injection again! I can’t just write the good without writing the obstacle that we went through! …
recoveringmatthew.blogspot.com/…/i-would-never-do-spinal-stem-cell.html
Aug 10, 2010 … We also believe Matthew got way too much anesthesia! Thankfully, we were able to get these behaviors to go away by doing many hours of deep …
recoveringmatthew.blogspot.com/…/i-would-never-do-spinal-stem-cell.html

Mr. Faiella has also self-published a book, Out of the Darkness: The Faiella Family’s Journey to Recover their Autistic Son, encompassing a number of alternative and questionable treatments. According to the Amazon page where it is sold, the book appears to be endorsed by JB Handley, of Generation Rescue and Age of Autism, as well as a number of individuals in the DAN treatment community. Recognition and notoriety – the mirage of a maverick hero “rescuing” a child — seems to glorify and goad along risky experimentation on children with autism.

The current news article depicting the Faiella family’s upcoming stem cell journey to Panama includes many elements typical of such accounts, such as the dreaded institutional prognosis rendered by the diagnostician. This has been a recurring theme in the Faiella treatment testimony, as has the impression that Matthew only recently acquired particular skills that are then attributed to the current treatments. As in a media article published when Matthew was seven:

“Faiella recently gained the ability to use words and loves to share his passion for drawing pictures.

Matthew’s dad said his son was diagnosed with autism at 18 months, and doctors warned he eventually would need to be institutionalized.

“They gave us really no hope,” Daniel Faiella said. “We broke down and cried, but I looked at the doctor and said, ‘Not my son. Not on my watch. I’m going to do whatever I can.'”

And another — Matthew is turning nine years old:

Published : Monday, 02 Nov 2009, 8:00 PM EST
WILLIAMSVILLE, N.Y. (WIVB) – Like most eight-year-old boys, Matthew Faiella of Williamsville loves playing with his action figures. Unlike most boys his age, he has an incredible talent for sketching, and can also speak Spanish.
It’s hard to imagine, just two years ago, Matthew, who lives with autism, couldn’t even string two words together.
“It was very sad to see, he was in his own little world. Couldn’t speak. Couldn’t communicate,” said Daniel Faiella, Matthew’s father.

The dramatic statements made in media opportunities regarding Matthew’s diagnostic baseline, (institutional) prognosis, and progress have changed significantly from the original parent testimony posted in public internet locations five years ago. According to Matthew’s mother, “momtoMatthew,” the diagnostic baselines and prognoses were quite different then:

When Matthew was four years old, his mother wrote:

“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 (Dec 2005), momtoMatthew explains that:

“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.”

Matthew is likely now diagnosed accurately as on the spectrum, as his parents do report. Interestingly, this is apparent in the very youtube video ICM (apparently the stem cell clinic) posted to advertise the treatment. The Faiellas now depict Matthew as “85% recovered” on a charitable site soliciting donations for his additional stem cell transplants. The meaning of “85% recovered” remains unclear, as does the remaining 15% of autism to be eradicated with a 5th stem cell treatment.

Matthew is a charming young man and has made wonderful progress over time. This would understandably pique the interest of a “new” set of parental eyes unfamiliar with the history, especially since his progress is now being attributed largely to hbot and stem cell transplants. However, according to past parent testimony, Matthew has been communicating, speaking in sentences, answering questions, following 3 to 4-step directions, reading, spelling, writing, and drawing long before his hyperbaric oxygen and stem cell treatments:

Dec 2005: Having just turned five years old, Matthew can indeed communicate in sentences, and on this occasion, language progress is attributed to supplements:

“After giving him his supplements, I would say within 15 to 20 minutes he was much calmer and happily playing with some toys. He came over to me a few minutes later and said “excuse me mommy, I want to watch the dog movie.”

Matthew was spelling and reading words at age 3 or 4, and mom states that his handwriting was advanced for his age of 6 at this time:

Despite the parents’ claims that Matthew’s developmental gains are more recent and due to stem cell treatments and hbot, Matthew had made significant progress by the time he was 5, according to mom:

“My ds has come a long way since he was first dx’d. At that time he was completely non-verbal, he could not follow any sort of direction, he would spend at least a quarter of the day spinning in circles or hand flapping (or both).
Today he is a little chatterbox, can follow directions fairly well..even 3 and 4 step directions, he no longer spins or flaps, and his receptive language is much better.”

And also as a five-year-old, mom reports that Matthew was initiating conversation, answering questions, and speaking in sentences:

It is curious that Matthew’s parents later edited and deleted the seemingly contradictory content of these past public posts, following the publication of their book and numerous media articles (checked using an address captured in the screenshots). Perhaps this is most unfortunate for the parents themselves — these at least served as markers along the path that Matthew actually traveled, in case they ever wish to find their way back.

When parent testimonies take on a life of their own, the well-meaning parents responsible may have lost their way, lost their boundaries, and even lost their recollection of the child that actually was – a happy, healthy boy who has been learning, loving, and making progress all along.

Internet testimonies and fantastic treatment claims: approach with caution.

32 Responses to “The Peril of Parent Testimony – Stem Cell Treatment for Autism”

  1. Emily Ziehmer December 15, 2010 at 12:51 #

    When reading this post, I could not help but remember when my son was first diagnosed. I naturally went to the internet to look for information on autism. What I found was appalling, left me shocked, questioning God and feeling like I had somehow hurt my child. I decided there had to be something out there that made rational sense. I then found the autismstreet site and Dr. Paul Offit. If it had not been for the science bloggers out there, I would have been lost in the swirling vortex of irresponsible nonsense to which many parents adhere. In going through a process of “hashing things out” with God and reading the book God in the Dark by Os Guinness, I came to a place of peace. The verse that stood out to me most was Isaiah 45:11. It said: “Do you question me about my children, or give me orders about the work of my hands?” I may have had to grieve what I thought would be for my son, and I may have had to reconcile my dreams versus the reality with my Creator, but I have never and would not take a Mengele approach to “curing” what just is. Would I advocate for my child’s educational rights? You bet I would! Would I seek out rational, proven supports and help for my son? Of course I would. Would I put my child through hell in an attempt to find that miracle “cure” or to attain a certain status or fame, or shall we say “notoriety,” or to obtain book deals and amass wealth? Of course not! Shame on those who are out there terrifying parents new to this diagnosis. Shame on you who disseminate false information and support ideology that will harm others. Thank you, science community for speaking out and not allowing others to bully you into silence.

  2. Prometheus December 15, 2010 at 21:36 #

    When George Orwell first wrote about “memory holes” in his dystopian novel 1984, he had no way of knowing that the Internet would spawn such “anti-memory holes” as the Wayback Machine and other web archives and caches.

    It’s one thing to “mis-remember” the past – it happens all the time; it’s a completely different matter to try to re-write the past. In trying to make the past conform to what they wish it had been, based on their current hypothesis of what “works” for autism, Matthew’s parents have crossed the line between error and deception.

    I was once advised to give up wishing for a better past and concentrate on making a better future. Good advice for Matthew’s parents, as well.

    Prometheus

  3. Barbara Boucher, OT, PhD December 16, 2010 at 13:50 #

    Poor Matthew. All around him are school personnel, any medical professionals his parents allow, neighbors and relatives who are either bound by privacy regulation or common courtesy to keep quiet how he appears to them. Except that they are also bound to report any perceived harm to him. Would this summary documentation be adequate to diagnose the parents with mental illness?

  4. Amy December 17, 2010 at 05:10 #

    Nicely done.
    This story is quite familiar to me. I remember being appalled at one of the Faiella family’s videos posted on their blog, in which little Matthew was receiving a stem cell treatment in Costa Rica. When his dad asked Matthew if he knew what the doctor was doing in the video, Matthew answered, “Fixing me.”
    Kudos for sharing the actual timeline of events here. It shows how recollections can be incorrect or downright fabricated to suit one’s needs or wants.
    Matthew has always been an adorable little boy with a lot to offer–it’s a shame anyone thought he needed fixed.

    I e-knew momtomatthew for those early years in question, although I must admit to being a little antagonistic toward her on that forum and one other. We disagreed on nearly everything.

  5. Joseph December 17, 2010 at 15:41 #

    It’s one thing to “mis-remember” the past – it happens all the time; it’s a completely different matter to try to re-write the past.

    I was going to say the same thing as Prometheus here. Orac seems to be giving these parents the benefit of the doubt. He says it might not be intentional. But if they’ve changed their story after deleting old posts, then it’s clearly intentional. I’d even characterize it as fraud.

  6. Linda December 17, 2010 at 16:52 #

    Matthew seems to be a wonderful, healthy, and happy boy, and I just don’t understand why his parents can’t see that. And I don’t understand why they would subject their precious little boy to that kind of treatment, or why they would risk their family financially. To me it appears that they are throwing the child they have under the bus, simply to pursue the fantasy of a “perfect” child.

  7. Kathryn December 20, 2010 at 08:16 #

    Would this summary documentation be adequate to diagnose the parents with mental illness?

    Hmmm, such as Munchausen by Proxy? Excellent point!

  8. Robert Aaron December 23, 2010 at 16:16 #

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    properties and their cost-effective nature. Innovation: The
    innovative project I propose takes the ASD research in a new
    direction by shifting some of the focus of ASD research from
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    disruption of the earth’s natural atmospheric electrical
    frequencies and the lack of the free flow of electrons from the
    surface of the earth. The benefits of using specifically configured
    time varying magnetic fields has added a new and exciting dimension
    to biology and medicine, and a revolution is occurring.5 1 Oschman,
    James L. P.h.D. “Perspective: Assume a spherical cow:The role of
    free or mobile electrons in bodywork, energetic and movement
    therapies’’ http://www.intl.elsevierhealth.com/journals/jbmt 26 jan 07. 09
    march 09: accepted August 2007. 2 W.O. Schumann and H.L. Konig,
    “Uber die beobachtung von atmospherics bei geringsten frequenzen”,
    Naturwissenschaften, no 41, p. 183, 1954. 3 Cherry NJ. “Schumann
    Resonances, a plausible biophysical mechanism for the human health
    effects of Solar/Geomagnetic Activity”. Journal of Nat. Hazards.
    2002;26:279-331. 4 Cherry NJ. “Human intelligence: The brain, an
    electromagnetic system synchronized by the Schumann Resonance
    signal”. Elsevier Medical Hypothesis . Vol. 60 issue 6 Jun.03
    received 5 August 2002; accepted 11 Nov. 2002. 5 Bassett C.A.L.
    “Beneficial Effects of Electromagnetic Fields”. Journal of Cellular
    Biochemistry 51:387-393 (1993) Received July 20, 1992; accepted
    August 1992. magnetictherapydevices.com earthpulsetechnologies.com
    barefoot health.com earthfx.net HELP THESE SUFFERERS!!!

  9. Chris Oswald January 11, 2011 at 21:36 #

    I know only what I have read on this site about Matthew but what shocks me is the responses. It would seem that none of the responders have an autistic child and know the agony involved. We love our autistic son and are so happy to have him but we will do anything (first checking it out thoroughly) of course to improve his life. It seems wholly irresponsible to just accept it and not try and do everything in your power to help the child, relying on biblical quotations. One person wrote:
    ” To me it appears that they are throwing the child they have under the bus, simply to pursue the fantasy of a “perfect” child.”
    Doing nothing is throwing the child under the bus. Doing something positive is a parent’s responsibility, of course checking first it is a sensible procedure. But what is wrong with trying something harmless even if it does no good at the end of the day? There is no mention of the power of hope here. People sometimes delude themselves with hope but often they achieve the unachievable through hoping for something better and striving for it. I don’t know whether stem cell treatment will work but having just found out about it I am going to do my best to understand it sufficiently to make a decision.

    • Sullivan January 11, 2011 at 22:59 #

      “Doing nothing is throwing the child under the bus. ”

      Who says parents who don’t do stem cell therapy on their children are “doing nothing”? As already pointed out, the idea that no one here has an autistic child is false logic–it is also just plain incorrect.

      But, consider the option: apply a therapy which has no proven (or even well explained theoretical) benefit, but has proven risks. Not subjecting one’s child to this is not “doing nothing”. It is protecting the child from harm. Protection *is* doing something.

  10. Kassiane January 11, 2011 at 22:51 #

    I think “you obviously don’t know anyone autistic bc if you did you’d agree with me” is such an egregious logical fallacy that the word logical gives it too much credit.

  11. Chris Oswald January 11, 2011 at 23:05 #

    Kassiane, your statement really does not do anything to move this forward. It is incorrect anyway:
    1. I said it appears the responders do not have an autistic child. There is a world of difference between knowing an autistic person and having an autistic child which is entirely your own repsonsibility. Our son is wonderful and loving and fun but I would do anything that did not harm him further to try and improve his outlook. It is incredibly frightening to know that we as parents will not always be there to look after him.
    2. I used the word appears because it is an observation and not part of an argument. I was prompted to enter a post because of the condemnation so evident in these posts. I was careful to point out that I know very little about the treatment and almost nothing about the people cited as involved. I objected to the seemingly high handed judgement and the corresponding condemnation, it appeared to me, of autistic children to a life trapped in autism without hope.
    I hope that clarifys what I was trying to say.

  12. ASD Dad March 30, 2011 at 05:26 #

    Linda, it is not about a fantasy of having a perfect child, it is about being able to look your kid in the face when they are 18 and telling them you did everything in your power to recover them. It is about giving them a chance to succeed in life. To give them the chance to read, to write, to have friends and hopefully a family. It is about hope, and love for your child. And the reason he seems happy, is because of stem cell and everything his family has done. And you don’t understand, because I’m sure you don’t have a kid on the spectrum. And if you do, they may not be as severe as Matthew was. Every kid on the spectrum is different. And for you Sullivan, there are private studies. And there are no greater risk with stem cell then there is with open heart surgery. In fact, IV stem cell is not invasive and has already been proven to repair torn ligaments, etc. It will one day replace many surgeries. Ask the FDA why they are anti Stem cell. Can you say 60 billion dollars? There has only been 1 stem cell fatality in Germany. Keep in mind even the most minor surgeries here in the US carry the same risk of death. Fact, with a successful stem cell transplant, there has been no documented cases where the patient has become worse. Obama recently signed stem cell legislation, and even the vatican has donated to stem cell research. I would agree that the lumbar infusion is the most extreme and questionable, but there are other methods of transplantation, such as via IV, that are much safer and that can be highly effective. I think we can all agree that the lumbar route was risky, but we should all be thankful Matthew is ok, and that he has recovered so well. He was put at risk, he made it through, and his progress has given new hope to millions of others. I don’t understand all the negativity here. We should be thankful stem cell is getting the exposure for helping ASD kids, patients with MS, TBI, leukemia, cancer, etc. Stem cell therapy is here, and it is saving lives. The glass is half full people. Promethius( stupid name). Matthew’s parents are concentrating for making a better future. No one can change the past…you idiot. And Barbara! Poor Matthew? Really. I’m sure it is hard for him to be surrounded by media all the time, but the kid couldn’t speak or read a few years ago. Put me in his shoes before stem cell and give me the choice of not recovering, or recovering and being in the spot light…….guess what I’ll take? Duh!. Deep in Matthew’s heart he thanks his parents every breathing minute. Trust me. And yes our son is on the spectrum, and no I don’t agree with Matthew’s parents of removing the lumbar scar blog.

    • Sullivan March 30, 2011 at 18:00 #

      “And for you Sullivan, there are private studies.”

      What is a “private study”? This is not putting my mind at ease at all.

      “I don’t understand all the negativity here. We should be thankful stem cell is getting the exposure for helping ASD kids, patients with MS, TBI, leukemia, cancer, etc. Stem cell therapy is here, and it is saving lives. ”

      Can you provide one reference where a stem cell infusion has saved a life? By what mechanism?

      “n fact, IV stem cell is not invasive and has already been proven to repair torn ligaments, etc.”

      How can something be both IV and not invasive? One is infusing cells from another person into the child. That is invasive.

      “And there are no greater risk with stem cell then there is with open heart surgery.”

      I’d love to see the data on this. Please provide some links to studies performed showing the risks of stem cell therapy. Please point me to the agencies which are collecting data on adverse events related to stem cell therapy. Without that, there is no informed consent.

      There is no evidence for benefit and no one actually collecting and reporting on risks. How exactly am I supposed to make a risk/benefit judgment? The answer is clear: I can’t.

  13. daedalus2u March 30, 2011 at 19:03 #

    I think Dr Novella did a write-up of a Chinese stem cell clinic a while back. What they did was collect cord blood, separate it, then inject the “stem cells” from the cord blood into the patient (victim).

    They said to expect “flu-like symptoms”, fever and chills. Those are immune system responses, exactly what is expected when a foreign protein (like stem cells that don’t match) are injected into someone. Exactly the same kind of reaction you expect from a vaccine.

    Pretty ironic that people who are anti-vaccine and claim vaccines are unsafe (even though they have been tested extensively) would use something like random cells from some random person that have never been tested at all.

  14. McD March 31, 2011 at 03:56 #

    Here you go:
    http://www.the-scientist.com/blog/display/55430/

    Main points:
    In 2002, when he was 9, [the boy’s] parents took him from Israel to Moscow to undergo experimental stem cell therapy. A team of researchers in Moscow injected multiple transplants of neural stem cells, which were derived and purified from the brains of aborted fetuses.

    Four years later, the boy was diagnosed with a very slow growing form of cancer called glioneural neoplasm after …complaining of headaches.

    [The tumor] contained a hodgepodge of different cell types. The different types suggest that the tumor “originated from a stem cell that can differentiate towards various directions,”

    … the tumor could not have arisen from the boy, because he is homozygous for the mutation that causes AT [the disease he was being ‘treated’ for], while the DNA from the tumor cells carried only the normal allele.

    The report didn’t mention whether the stem cell therapy made any difference to the boy’s original illness, he is still wheel-chair bound by the sounds of it.

    If I were Matthew, I would not be happy about having a ticking time-bomb nestled among my neurons.

  15. Bobbo April 25, 2011 at 04:07 #

    Wake up! The powers in charge don’t won’t your children to be helped! You alone have to help them.
    Mitochondria dysfunction is the root cause…. No energy no cell coherence.

  16. Chris April 25, 2011 at 05:48 #

    Cite?

  17. Anne April 25, 2011 at 09:02 #

    Bobbo, also cites on who are the “powers that be” that somehow benefit from people having autistic kids, or adults being autistic.

    The government? What’s their motivation, when autistics generally cost them money?

    The medical establishment? Mainstream medicine doesn’t make money selling treatments for autism.

    The ABA industry? DAN doctors? Hmmm, you might have something there, but still… cite some sources for your alternative.

  18. Sniffer April 25, 2011 at 09:43 #

    Dear All,

    There is nothing teratogenicity and neuropathically wrong with Stem Cells I can`t find the same with any allopathic drugs, treatments apart from a plaster cast on a leg, or do the regulars on here know differently??

    This is only one family with a success story concerning Stem Cell use. Google Stem Cell on You Tube(thank god for You Tube) and see the thousands of real people with real gains from Stem Cell .

    Sullivan ,what would you suggest(apart from throwing the child under the bus;not joke able ) keep listening to lies from the CDC and dope the child with Ritalin ,as you know has the drug thalidomide ..the mind boggles??

    Sincerely

    Sniffer

  19. ASD Dad May 7, 2011 at 04:18 #

    Sullivan, If you want references, go to youtube. There are dozens of videos of success stories. You asked: “How can something be both IV and not invasive?” Scalpel/cutting = invasive, IV/no incision = non invasive. Did you really ask that question? 1 +1 =2. You said ” One is infusing cells from another person into the child. That is invasive. ” You can transfer stem cells via grafting, or IV infusion. Just because they may come from a donor, doesn’t mean they must automatically be done invasively. Have you read up on Autologous stem cells? You should read up on them.

    If you want data on how risky open heart surgery is, look it up, or go talk to your doctor. I have news for you….it is.

    Go to youtube, open an account, pull up some videos, and email the users and talk to them. At the end of the day I’m not here to sell you on stem cell. You must do your own research and make your own decisions. Personally I have read enough and spoken to enough patients to make my own call. Do what you will, and best of luck.

    Anne, The powers that be( pharma lobbiest) don’t benefit from autistic children, but they benefit from Vaccines. Although vaccines have been proven to be safe, given one at a time, there are no studies that have proven that vaccines are safe given in bulk( 5 or more at once), like they do now. Big Pharma have billions to lose if Vaccines are reduced. Here is a link on how Japan quit using Phizer’s vaccines due to recent deaths of children. http://www.msnbc.msn.com/id/41947239/ns/health-kids_and_parenting/

    So Daedalus2u, we are not anti vaccine, just anti bulk vaccine.

    As far as the bow from Moscow, correct me if I’m wrong but stem cells from a fetus are not “adult” stem cells, and there are all kinds of major health risks as well as ethical concerns with embryonic stem cells. Sad story. My comments pertain only to adult stem cells, so I want to make sure we all compare apples to apples.

  20. Dedj May 7, 2011 at 04:29 #

    I’d be amazed if these reports of someone developing a Non-IV IV were true.

    Tip: look up the definition of ‘invasive’.

    Also, please refrain from volunteering other people to act as your spokesperson without their permission.

    Also, please provide a proper good quality reference to………er…..whatever point it is you’re trying to make.

    “Go to youtube” gets you laughed at around here, as it should do.

  21. Prometheus May 7, 2011 at 05:53 #

    “ASD Dad”, in response to a request for citations, replies:

    “If you want references, go to youtube. There are dozens of videos of success stories.”

    Seriously? There are also videos of people who were abducted by aliens and how to survive on sunlight alone by staring at the Sun – “testimonials” posted on YouTube aren’t exactly “data”.

    From what I’ve seen, there isn’t even much data showing that these children are actually getting stem cells, let alone that these “stem cell” injections are helping them recover from autism.

    Pardon me if I come across as skeptical, but I recall how no less an expert than Bernie Rimland claimed that secretin resulted in “significant gains” in over 70% of autistic children a few years before the company, Repligen, finally admitted that their (extensive) research showed that secretin was no better than placebo.

    With YouTube testimonials, we have no idea how many children were treated and didn’t get better (or got worse) or how many would have gotten better with no treatment (it happens). That’s why we do scientific studies – to keep from fooling ourselves (or being fooled by unscrupulous “Little Pharma” opportunists).

    I also have to say that “Big Pharma” – which makes very little profit on vaccines – has much more to gain by coming up with a treatment for autism. It would be a big seller. For that matter, “Big Pharma” can make a lot more money treating vaccine-preventable illnesses than they could ever make on vaccines. If you doubt me, check the price of valacyclovir compared to the cost of the chicken-pox vaccine.

    Apart from haematopoietic stem cells (which don’t appear to be any use in autism), stem cell therapies are still being investigated to see if they are effective and safe.

    Prometheus

  22. ASD Dad May 11, 2011 at 05:42 #

    To compare videos of actual recovered children to alien abduction videos is moronic. Can you produce an actual alien? Didn’t think so. These are actual people you can reach out to and talk to. No reports to read, actual humans. …that have documented both before and after video. And I agree that videos do not capture the failed stories, you would figure there would be some out there by now and surely some parents that would have become anti stem cell activists by now……but I honestly haven’t seen many of them. Have you?
    I’m sorry but unless you can provide the books for all the big pharma companies on their marginal profits, don’t even go there. Those companies are not into that business to generate marginal profits. Those companies already know the risks of vaccines, and what damage they can do….so they know the only way to reduce autism is to reduce vaccines. Since 1983 the # of required vaccines has nearly trippled…..and since then so has the % of autistic children. Coincidence? I don’t think so. Again, I am not anti vaccine, however the govt should be disclosing risks, and they are simply not doing it. We should be practicing medicine that has been tested….and there is no bulk vaccine testing done.
    I’m not sure how secretin is in play here, but if your point is to be cautious, I agree, you should be cautious on everything. I agree, current studies are being conducted, and you will see that stem cells are safe if given correctly under the right conditons. All these cases about brain injections and embryonic stem cells being used is nuts. There are safe ways to do it. Stem cells are cutting edge. It is a shame the FDA has there nose in it. But they have 60 billion to lose, so I don’t blame them…..but they are wrong for it.

    • Sullivan May 11, 2011 at 06:13 #

      ASD Dad,

      when we look to YouTube for “recovery” stories, we find people like Desiree Jennings

      So, no, I don’t consider “YouTube” as a good source of data.

  23. ASD Dad May 12, 2011 at 04:43 #

    Sorry about any confusion …..Youtube videos are not data…they are testamonials. E.G…you can read studies(data) on how cigarettes cause lung cancer, and then you can pull up testimonials on youtube on how cigarettes killed someone with lung cancer. Just with any testimonial, one should always be cautious. The testimonials I investigated, I reached out to personally. And although it is possible these ASD parents could be “fooling” the public, I honestly doubt they would be so sick as to use their child in such a sick manner as to use them in any type of misconception video. Desiree is a sad story, her mental issues appear real…and she has my prayers.
    I have to question your cause here Sully. I have a hard time believing someone who is so negative also has a kid on the spectrum. If you do, then no one here is holding a gun to your head and forcing you to give your kid stem cell treatment. There are other treatments that are helping kids on the spectrum. If your kid is not ASD, or if you don’t have any kids, and you are here simply to be negative, then shame on you. You wanna be proactive and tell everyone to be careful? Yea yea, I agree. We get it. Bla bla bla. The simply say” everyone, please be careful and research everything.” The level of comfort of everyone’s research will vary, and you should respect that. You will never break our hopes of recovering our son, that I assure you. My only purpose here is to agree that everyone should be cautious and to bring visibility to Stem Cell’s success with ASD kids. There is no magic bullet for curing autism. As long as you are doing everything you can to help your kid, then great. We have our ticket booked to a treatment facility later this year, and I can assure you, that you will see our son’s video on youtube. Who knows, maybe our son will have a special message for you.

  24. Anne May 12, 2011 at 06:39 #

    The problem with testimonials is that with a sample size of 1, you can’t tell whether the stem cell treatment caused the improvement, or if the child would’ve improved on his/her own. Many children on the autism spectrum go through plateaus in development, then something “clicks” and they make rapid advances. It’s only natural to assume that whatever treatment you did before the advance caused the advance, except that this also happens in kids who aren’t getting extreme treatments.

    I’m also going to comment on some wording I see in a lot of posts from parents of autistic children: the phrasing “recovering our child from autism.” You (general “you” among readers, not just the previous poster) don’t “recover your child” from measles, your child recovers from measles. (Grammar geeks will know I’m distinguishing from the transitive and reflexive usage of the verb “to recover.”)

    “Recovering your child from autism” sounds like recovering lost data from your hard drive or recovering a stolen car. However, you don’t have a normal child in there that the autism is hiding, nor did autism steal your child. You have a child with autism or an autistic child, depending on how you feel about people first language. Your child may or may not develop more skills over time, which could be thought of as recovering from autism, but you are not recovering a lost child taken by autism.

    I know I can’t really understand the disappointment of losing the future you (general “you” of readers) thought you were going to have with your child, but please find a way to phrase this that is less demeaning to the child you have.

  25. Debi April 6, 2012 at 14:48 #

    Biomed is a way to improve the lives of those with autism. Works for some, doesn’t work for others. Faiella is a nut job who has THREATENED ME more than once for asking such simple questions as, “Are you receiving compensation for endorsing these things.” His typical mantra is, “Do you know who I am, my family is…” and off he goes. The impression is that his fam is some big mob family & I should shut up or fear them taking me out. I do not fear him! What I do fear is him suggesting dangerous treatments such as donor stem cell therapy without cause/proof and vulnerable families being sucked in.

    I believe this issue lies in the hand of the medical establishment, who still argues over whether autism has even increased, much less acknowledged the pandemic at hand, or provided anything anywhere near appropriate research funding to combat it. Parents will not stop seeking treatments to improve the lives of their children and if we want to keep nut jobs from harming their children or influencing others, it’s time for the research community and those who hold the purse strings to get off their duffs and and do something.

  26. Debi April 6, 2012 at 14:53 #

    “Bernie Rimland claimed that secretin resulted in “significant gains” in over 70% of autistic children a few years before the company, Repligen, finally admitted that their (extensive) research showed that secretin was no better than placebo.”

    The problem with autism is you may have a sample size of 5 & see improvements with 4, but when you open it to 200 people on spectrum, you may find it only works on 20. Law of large numbers washes much autism research because autism still isn’t defined medically. Want to being making real research progress, divide them into subcategories. ASD without GI impairment, autism with GI impairment would be a great start. We can’t even get the medical establishment to do that. Until we start assigning categories for diff manifestations/lab testing of autism, using tiny sample sizes to test treatments will never come to pass. The only thing I have seen near 100% for autism research is SPECT scan testing showing cerebral hypoperfusion.

  27. stardesignint May 25, 2018 at 09:06 #

    Thank you. It is true that parents are faced with many advertised so-call treatments, using in some cases false claims and a few “testimonials”. The Association for Science in Autism Treatments is a non profit dedicated to help parents of children with autism find important information about science-based autism treatment, and treatments that do not work of can even be harmful.

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  1. Tweets that mention Autism Blog - The Peril of Parent Testimony – Stem Cell Treatment for Autism « Left Brain/Right Brain -- Topsy.com - December 16, 2010

    […] This post was mentioned on Twitter by Kev, Alltop Autism. Alltop Autism said: The Peril of Parent Testimony – Stem Cell Treatment for Autism http://bit.ly/e3DNmQ […]

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