The Peril of Parent Testimony – Stem Cell Treatment for Autism
Posted Dec 15 2010 4:02am
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! ...
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 …
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.’”
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.
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.
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.
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Barbara Boucher, OT, PhD:
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?