“I feel like getting in my car, driving away and never coming back. I can’t stand it anymore. If the screaming, howling, humming, and screeching doesn’t stop I will lose my mind. 14 hours a day. From the second he open his eyes until the second he closes them there is noise. Even if you tell him to be quiet he sits there and says “be quiet…be quiet” over and over. Not more than 10 seconds goes by where some ridiculous sound isn’t coming out of my son. He talks in a high pitched screechy voice that makes every nerve ending stand on end. He screeches and screams for no reason. The humming, the high pitched humming all day long. I can’t take it. My head hurts so bad and there are only so many things I can take for a headache. I wake up at 7 am, or rather I am awakened by screeching at 7am and get no peace until about 9pm. By then my head hurts so much it doesn’t matter. I can’t get anything done because I can’t focus with the noise in the background. I can’t have a phone call. I can’t have a conversation in person. I know this is going to upset some people but I swear, I miss the days when he didn’t make a peep. not a single peep. I remember when I used to cry and ask him to talk to me, to say anything. I should have been more specific and wished he’d speak and make meaningful sentances rather than walk around all day and say meaningless phrases over and over, and scream and screech when he didn’t. know what meaningless phrase to use at the moment. I have about 40 minutes before he goes to bed then I get to listen to him hum himself to sleep for an hour. By then I should be ready to jump off a roof.
Thanks for letting me vent. Not sure if it made me feel better but at least if I jump off the roof someone knows why”
Posted by “Mary”, mother of “Saul”, age 7.9 (7 years, 9 months), to an autism “biomedical treatment” yahoo group in August 2009.
The idea that vaccines might be a cause of autism has received a great deal of attention from the media. Scientifically, the question has been thoroughly investigated and thoroughly discredited.
Legally, the idea has also been rejected. The Autism Omnibus case bundled the claims of almost 5000 children against the Vaccine Injury Compensation program. In the hearings for the first of three theories of causation, the lawyers for the parents and their children chose the strongest three cases to illustrate their claim that MMR vaccines and thimerosal-containing vaccines can combine to cause autism. On February 12, 2009, all three cases were dismissed. The decisions were scathing, stating that “the overall weight of the evidence is overwhelmingly contrary to the petitioners’ causation theories.” Moreover, parents were characterized as a “loving, caring, and courageous” family “misled by physicians who are guilty of gross medical misjudgment. In June and July of 2009, all test cases were appealed, and all three were dismissed.
The yahoo group “Environment of Harm” formerly “Evidence of Harm”, was established to discuss the book of the latter title, written by journalist David Kirby. The focus of the group is to discuss
“issues of government public health negligence and corruption and the various political efforts by parents to end the spectrum of epidemics that is being revealed as mercury poisoning, especially autism.”
From March 2005, the date of the book’s publication, until February 2009, when the Omnibus legal decisions were rendered, the group received an average of over 2000 posts per month. Since the rulings, the posting rate has dropped to only 800 per month, perhaps indicating that the issue is also losing momentum from a political point of view.
But behind the scientific and legal consensus that vaccines do not cause autism lies a hidden world, the autism “biomedical” yahoo- and chat-group world. There is no decline in the number of posts in this world. It’s a thriving, and growing community, one that has fueled the popularity of the anti-vaxers, and the certainty of those parents who consider their child “vaccine-injured”. It has spurred the spending of millions of dollars on supplements, hyperbaric treatments, off-label prescription medications, and myriad other autism “biomedical treatments”. These “treatments” are almost all of no proven benefit, some are ridiculous, some relatively benign, and many potentially dangerous. This article will explore the journey of one mother, “Mary” in her efforts to cure her son “Saul”. While the case of Mary and Saul, documented in her own words is shocking and appalling, Mary is not alone nor is she an extreme case. She is one of thousands of parents seeking autism “biomedical treatments” on the internet.
We first meet Mary in October 2003, when her son Saul (born November 2001) was only 22 months of age. She began posting on the group NLT (for a description of the yahoo groups discussed in this article see the section at the end). She stated that her son
“is basically non verbal. He said his first word, duck, at 7 months old. About a month later he said light, off , and on, but dropped duck. This set a pattern for him. Anytime he learned a new word he dropped any old words he had used at that point. Now, his only real words are Mama and Dada. He will on a rare occassion say car. He has had and lost about 20 words since 7 months of age.”
Shortly thereafter, he was evaluated by early intervention, and psychologist wrote PDD on his evaluations, along with the term Autistic-like. Mary was told that he was not autistic, but he’s autistic like. 10-20 hours a week of intensive in home therapy (ABA) was recommended.
So, Saul is a very young child, showing speech delay and signs of autism, evaluated very quickly, and almost immediately started on early intervention. Of course, Mary is understandably upset:
“I don’t know why I’m so upset. He (the psychologist) didn’t say anything I didn’t already know or suspect. I guess its just because my fears were realized. Rather than come in and say “oh no, he’s fine, he’s just a late talker” I heard what I was hoping not too. I’m sure that somehow to some degree this is my fault. Saul was such a quiet content infant, and he was content to play by himself as he got older I sort of went with it. I figured he was happy let me go do dishes, or laundry or whatever and let him entertain himself. Yeah that was great but now he is only happy by himself and turns in to himself and its my fault I know it is.”
Recent research (two links:here and here) has looked at the impact of parental acceptance of their child’s autism diagnosis. It was found that parents who do not come to a resolution (i.e. come to terms with and accept the diagnosis and its implications) find raising their child more difficult. In the case of Mary, we will see a real-life example of a mother failing to come to terms with her child’s PDD.
Here’s Mary again:
Thank you everyone for your support. I’m sorry I forgot to mention Saul’s age. He will be 2 at the end of the month.
I’m feeling a lot better but still overwhelmed. I want to read as much as possible so I can do the best to help him but I think I need a little time to come to terms.
A few questions though if anyone knows…Do kids diagnosed with PDD always end up as special ed or is their hope with therapy he main go mainstream. The reason I ask is that my cousin teaches 5th grade special d and the majority of her kids are PDD kids, and have been in special ed since kindergarten. What are the odds that my child will grow up, go to college and lead what is considered a normal life?
Also, I was reading about a special diet that gluten free that is supposedly helpful. Has anyone tried this?
Should I just go with the system for say 6 mos or so and see how he responds and progresses before trying anything different like diet changes or supplements.
Sorry if I’m asking a million questions. My brain is spinning and all the websites I go to just overwhelm me more. Everyone here seems to have such a wealth of knowledge, and more importantly personal experience and understanding.”
This message signals the start of a frightening journey into the realms of woo. The “treatments” inflicted on Saul are very painful to read. Mary joined numerous autism “biomedical treatment” yahoo groups. She is presently a member of all the groups in the box, see below (except EoH), and more besides. She has posted more than 3500 messages to these groups. Mary reveals her willingness to accept medical advice from strangers on the internet, and her trust in doctors employing “gross medical misjudgment”. Between the ages of 3.6 and 7.9, Saul has been “treated” with the following (in alphabetical order):
Acetyl L Carnitine -
acetylated form of L-carnitine
(quaternary ammonium compound biosynthesized from the amino acids lysine and methionine)
-prescription drug which carries a black box warning
Cal/Mag Butyrate – mineral supplement
- marketed as an enzymatic remedy to treat the yeast infection candida
Carnosine -amino acid
Chelation – process of removing heavy metals
Andrew Cutler protocol (at least 50 rounds)
DAN protocol for 2 1/2 years.
15 IVs of EDTA & Glutathione
5 IVs of DMPS and glutathione
5 combined IVs DMPS/EDTA/Glutathione
Diflucan – prescription anti-fungal
Dimethyl glycine – modified amino acid
Enhansa – Enhanced absorption curcumin supplement
Epsom salt baths
Essential fatty acids
Flagyl (Metronidazole) – prescription anti-fungal
Folinic acid – modified folic acid
Folapro – highly absorbable folate
prescription drug used for the treatment of mild to moderate
Alzheimer’s disease and various memory impairments
GFCF diet – gluten-free-casein-free diet (3 years)
GFCF diet with digestive enzymes for infractions
hyperbaric oxygen treatment
(Mary owns her own Mary owns a Vitaeris 320)
HLC MindLinx Powder by Pharmax – probiotic
IM Bicillin – prescription intramuscularly injected form of penicillin
Inositol – a nutrient
IVIG – Intravenous Immunoglobulin
used to treat immune dysfunction
contains the pooled immunoglobulin G (IgG)
immunoglobulins from the plasma of approximately a
thousand or more blood donors
Klaire Labs Detoxification Support and Factor 4 – probiotic
Liquid Bodybio PC – phosphatidylcholine with essential fatty acids
Liquid grapefruit seed extract
Low dose Naltrexone – an anti-opiod
L-theanine – amino acid
MB12 – Methylcobalamin, vitamin B12 – shots
MB12 – Methylcobalamin, vitamin B12 – spray
Nizoral – antifungal
Nystatin – antifungal
OLE – olive leaf extract
also know as 1,3-benzenediamidoethanethiol)
an untested synthetic chemical
Oxytocin nasal spray
PCA-Rx – purports to remove toxins from the body
Pro Bio – probiotic
Quercetin – antioxidant flavinoid
Reduced glutathione cream
Transdermal NAC (N-Acetyl Cysteine)
used to treat infections caused by herpes viruses
Zithromax – antibiotic
Mary has been tireless in “treating” Saul. But what about Saul? One would think that he must be very impacted by autism in order for her to go to these extraordinary lengths to cure him. Actually, no. He’s an extraordinary kid, and a wonderful one. Saul could identify all of the letters in any order and count to 40 at age 2.2. He started sight reading words at about 2.3 and at age 2.8 could sight read about 30 words. He started kindergarten in a segregated setting at age 4.9, , talked to the teacher, “he sat nicely through circle time, sat at his desk during class, and even raised his hand and answered questions. He was pointing to shapes on the wall and quizzing the teachers!” Here is Mary’s description of Saul at age 4.7:
“I woke up this morning and he was in bed with me. I’m not sure what time he came in because I never heard or felt him get into bed which is unusual. I woke up and felt him there. I rolled over and his little face was right there. He looked so peaceful and really has the face of an angel. I just laid there and stared at him for about 20 minutes. He yawned and opened his eyes. He saw me and his face lit up with a HUGE ear to ear grin. “Good morning Mom. Love you. Gimme a hug.” He gave me such a big strong hug. “Gimme a kiss.” I gave him a kiss. A second later his gears kicked in and he was off and running on full speed. After a few minutes he came back in the room and said “GIMME BREAKFAST! ! !””
But the “biomedical treatments” have not always been kind to Saul. Here’s Mary describing him at age 5.11
My son is on a ton of supplements. We haven’t really changed anything. Starting August 30, for three weeks we had to stop all enzymes, antifungals and probiotics in preparation for a endoscopy/colonoscopy. He is back on everything since he was scoped on Sept 20. Also at the beginning of August he had a high fever and a nasty rash that was diagnosed as Fifth’s Disease. I’m not convinced it was Fifths. He didn’t have the bright red cheeks and the rash was gone in 3 days.
After being sick he became clingy and a little whiny. In the past month its become horrible. I can’t even stand up without his whining “mommy..moooommmmmy, mommy will come.” I hear this the entire time I’m out of the room. Even if I tell him what I’m going to do and that I’ll be right back he continues saying it over and over. He whines over every little thing. Usually just lets out a big “WWWAAAAHHH” and it goes on and on. He cries over everything. He’s driving me insane. We are also seeing a decrease in spontaneous expressive language, asking repetitive questions, and repeating back questions instead of answering them.”
Nor have the “biomedical treatments” been kind to the family budget. In one message, Mary admitted that each month she spent $2800 – $3500 for IVIG, plus about $500 in supplements including the cost of chelation.
In a rare moment of insight, in May 2008, Mary posted:
“Sometimes I feel like a mad scientist and my poor kid is my guinea pig.”
Finally, a year later, she posted the preamble to this article (see box at top). How’s that “biomedical treatment” working out for you, Mary?
Such are the real costs of the anti-vaccination movement, the “biomedical treatment” internet groups. And the real costs of a parent unable to accept their child’s diagnosis. In her last message to the NLT group, Mary is still in denial about her son’s diagnosis:
RE: Sowell Traits
My son is 5 and is diagnosed PDD-NOS fits 7 of these to a T! ! ! The only one that doesn’t fit is # 7
Makes me wonder what we are really dealing with.”
Thousands of parents are members of these yahoo groups. Once inside the cozy echo chamber of the group, there is general acceptance that vaccines cause autism. Members expressing opposing views are drummed out of the group. It is taken as an article of faith that there are children recovering from autism by the use of these biomedical interventions. The parents get poorer, the quacks get richer, and the innocent children are the victims of often dangerous and painful experimentation at the hands of the people who are supposed to care for them the most.
A-M – Autism-Mercury. Membership 8400, 2000 messages/month (archives public)
“To discuss current issues related to the increasing incidence of autism the potential link between excessive mercury exposure via thimerosal in infant vaccines. Topics include: mercury detoxification (“chelation”), mercury-related issues/news, and vaccination-related issues/news. Most members are parents of children with autism, aspergers, ADD, ADHD, PDD, PDD-NOS, SID, oppositional defiance disorder, apraxia, speech disorders, and/or other related symptoms. There are many labels: you are welcome regardless of particular label(s). In addition to mercury, we also discuss other heavy metals (for example: arsenic, antimony, lead). Many parents here are in the process of chelation, with a child. This process is discussed in detail. Also welcome: mercury poisoned adults; other disorders/issues related to mercury poisoning; other biomedical treatments for ASD.”
Comment: Primarily discusses Andrew Cutler heavy metal chelation protocol. This protocol relies on faux “counting rules” applied to hair testing to purportedly prove that people are “mercury toxic”. Andrew Cutler has a PhD in Chemical Engineering.
CK2 – Chelatingkids2. Membership 6600, 3000 messages/month
“This list is for parents and/or family members of children with autism who are seeking biomedical intervention, The main focus of treatment here follows the DAN! or Defeat Autism Now.”
Comment: Mercury chelation according to the DAN! protocol. This protocol relies on provoked urine tests to purportedly prove “mecury toxcicity”. This very active group has been recently closed to new postings for an unspecified period of time.
EoH – Environment of Harmformerly Evidence of Harm. Membership 2300, 600 messages/month (archives public)
“This is the Environment of Harm discussion list focusing on vaccine damage and mercury poisoning as it relates to autism. Of keen interest to participants are the issues of government public health negligence and corruption and the various political efforts by parents to end the spectrum of epidemics that is being revealed as mercury poisoning, especially autism.”
Comment: Politically active group originally supporting the autism is caused by mercury poisoning hypothesis, but now openly anti-vaccine.
GFCFKids– Membership 14000, 3500 posts/month
“The principle aim of this list is to provide a discussion forum for parents of children on the autism spectrum who are avoiding gluten and casein and other substances in their children’s diets. We hope that the discussions will include practical information and tips on following a GFCF(etc) diet; scientific research and opinion; the latest developments in understanding GFCF(etc) diet-related health problems; your personal stories and experiences with relation to GFCF(etc) problems; information on what food is GFCF(etc)and what is not; tips on how to eat out of the house; recipes and tips on how to cook and prepare GFCF(etc) food; what vitamins, minerals, herbs and other supplements may be appropriate for a child with autism, how to cope with difficult diet demands, plus support for parents.”
Comment: One of the largest “biomedical treatment” yahoo groups. While the GFCF diet has substantial anecdotal support, clinical trials have not shown any benefit. The GFCF diet appears relatively harmless, however, it can result in weakening of bones due to nutritional deficiencies. Moreover, it often acts as a first step on the path to more dangerous “biomedical treatments”.
NLT – NaturalLateTalkers. Membership 2900, 500 messages/month
“This list is a support for parents of latetalkers or speech delay with some or all traits of latetalker listed in the book Late Talking Children by Thomas Sowell. . . Here parents ARE and will be able to discuss their problems, concerns, and dissatisfaction with the over diagnosing done by various systems, such as speech therapists, doctors, schools, etc. Parent’s choice helping with speech through parent or another source is to be respected.” (sic)
Comment: This list supports those in deep denial about their child’s autism. While such support groups appear to be relatively benign, offering mutual support to parents of children with disabilities, they are often an entry point for parents to learn about the autism “biomedical treatment” and anti-vaccination movements. These groups are replete with examples of parents taking medical advice from strangers over the internet, many of whom are accorded more credibility than the medical professionals who have actually seen their children.