“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.
The mainstream media, the groups such as the AAP, and the blog sphere have also pushed back in an effort to educate the public on the harm done by the vaccines cause autism groups.
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)
Actos (pioglitazone)
-prescription drug which carries a black box warning
Cal/Mag Butyrate – mineral supplement
Candex
– 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
Chiropractic
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
Galantamine
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
HBOT
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
prescription
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
Magnesium supplements
MB12 – Methylcobalamin, vitamin B12 – shots
MB12 – Methylcobalamin, vitamin B12 – spray
Nicotine patch
Nizoral – antifungal
Nystatin – antifungal
OLE – olive leaf extract
OSR
(N,N’-bis (2-mercaptoethyl)isophthalamide,
also know as 1,3-benzenediamidoethanethiol)
an untested synthetic chemical
Oxytocin nasal spray
PCA-Rx – purports to remove toxins from the body
Phosphatidylcholine
Pro Bio – probiotic
Quercetin – antioxidant flavinoid
Reduced glutathione cream
Threelac -probiotic
Transdermal NAC (N-Acetyl Cysteine)
Valtrex (valacyclovir)
used to treat infections caused by herpes viruses
Vitamin C
Vitamin E
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 # 7Makes 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.
Some Yahoogroups
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.
Left Brain Right Brain 
My “Evil Possum” site has two articles, “Frankenpharma” and “Pointless, Useless and Dangerous”, dealing with the ApotheCure and Lee Silsby compounding pharmacies. Direct federal regulation of compounding pharmacies deserves to be a high priority in health care reform. Meanwhile, I would frankly suggest attacking the “cure” industry by reporting the actions of physicians AND parents as child abuse. In the case of the Geiers’ Lupron protocol (“Even Worse”) there is actually a clear precedent for criminal prosecution.
Just to bring people up to speed on the sock puppet situation:
“jen”, “Jennifer L”, “This is Ridiculous” and “nicksgirl” are all posting from the same IP address.
The same person tried “guest blogger” as a name for a while too, but I have changed those posts to “jen”
This article is ridiculous. I am shocked that you’ve even posted something like this.
what a coward you are!!! you post under “guest blogger”! show yourself!!!!
Jennifer, if you aren’t horrified by the majority of the words that the mother quoted in the piece wrote, then it is you who are ridiculous. This is a woman in dire need of intervention and a child who cannot be even remotely considered to be in a healthy, safe environment.
If you can’t fully support your contention that this blog post is ridiculous and why as well as why you are shocked it was published, if you can’t see that what is shocking is this mother’s words, this mother’s actions, then there is something seriously wrong with how you see this world.
Ridiculous? In what way?
I can assure you that I have documentation and links for every statement that “Mary” has made. Out of consideration for her privacy I have not included these links. I’ve changed her name and her son’s name. I don’t want to personally embarrass her. She’s clearly a well-meaning person. She’s just fallen into the clutches of the autism biomedical treatment yahoo groups. And into the clutches of the greedy quacks.
“Mary” herself posts under a pseudonym.
Unfortunately, I know a real person by the name of Mary who not only does these things to her son, but her daughter as well.
I believe that KWombles is correct…these “mothers” need the interventions.
My “Mary” has written on similar websites that she is disappointed in her son because she was hoping he would be recovered by kindergarten, like his sister.
My heart is breaking for these children and what they are put through. What a way to spend your childhood !!!
I thought it might be interesting to add my view point, as someone who grew up with undiagnosed Asperger’s Syndrome. I know how it feels to live with an Autism Spectrum Disorder.
I can easily see how Mary fell into the sphere of pseudo science and potential charlatans in a quest to help her son. After all, who doesn’t want the best for their child, and won’t explore all avenues in the search for answers?
I don’t want to fan any flames in the war over whether Autism is an inherited condition or not – clearly that is for each person to decide based on the evidence available to them. Unfortunately, however, if you immerse yourself in online groups such as those mentioned above, it’s very easy to just get presented – brainwashed almost – into seeing just one side of the story.
I was frankly stunned and saddened at the huge variety of treatments that Saul has received over the course of his childhood thus far.
To me it just feels so unnecessary.
I feel Mary’s pain in the opening paragraph – autism really can place a huge burden on families, but do you know what? Acceptance of the condition goes a very long way towards helping.
Taking a step back and saying, “Ok, so Saul has an ASD. What sort of problems is this going to cause him, and what support can we offer to help minimise the problems?” really can and does help. Enormously.
I can’t, however see how subjecting the child to a huge regime of differing treatments is actually helping.
How must Saul feel? Like he is a very broken person, because despite his Mother’s desperate search for cures, he is still not cured? That’s most likely how I’d feel in that situation. And you know what? That would make me feel like an abject failure. I really feel for Saul. (An Aspie empathising with someone? Yes. It happens. All the time. Even if I find it difficult to express face to face.)
I have a degree from a good university, a job, a wife and two kids. Has Asperger’s stopped me from leading a relatively normal life? No. Has it made my life difficult and been an often bewildering ride? Yes.
Try and look at the positives. A diagnosis of an ASD need not ruin anyone’s life.
Jennifer – Editorial policy here at LBRB is that we do not care what name a person uses, we care what they say and how accurate what they present as facts are indeed facts. You might be a man named Ron for all anyone knows – or cares.
James – its always great to hear the voices of autistic people. I’m glad you stopped by and gave your considered and thoughtful opinion.
Hey Kev, it is editorial policy too to allow a poster to lurk on a closed group then copy and paste another’s words? And is also editorial policy to not allow response comments when they don’t fit with your views???
I don’t have a child with Autism, I have a child who was on their way thou. I have a child with severe food allergies. I have a child almost all doctors in different hospitals and clinics had no answers for. The only thing that has helped my child with his allergies was diet and supplements. If it wasn’t for these parents trying to help their child who suffers from things like Autism or ADHD I have no idea where I would be. I owe them everything because of if not for them I would have had no help.
My 1st comment post I was trying to convey to you all this post is ridiculous because this poster lurked on a closed group and copied and pasted a post and shared it with an open forum. It doesn’t matter what I do or don’t agree with on “Mary”‘s posts or anyone elses…the point I’m trying to make is it is morally wrong to lurk on a group and steal a mother’s words and attack her for trying to do anything to help her child.
Go attack the crack-head parents, child molesters, etc. Leave these poor people alone!!! It is wrong on soooo many levels. Instead…do some research and show this group of people evidence of your claims, please!
What I find sad is that you have nothing better to do with your time than search out 6 years of posts by one person. Do you have your own child with autism at home you can be spending time with? Or how about reaching out to this mother privately and offering advice rather than condemning her publicly.
Jennifer – you’re being silly. No ones words have been stolen, they’ve been highlighted fully within context and published. If you have such an issue with anonymity why do you defend the idea of closed access groups at all?
Its not morally wrong to quote another person. It is however morally wrong to ‘treat’ children as guinea pigs. Mary’s own words. If you think thats an OK thing to do then I’m so glad I don’t know you.
This is rid…,
Seems like a perfectly reasonable exercise in investigative journalism to me.
It’s wrong on soooo many levels to think parents should be able to do anything they wish to their children, without comment nor criticism, if “trying to do anything to help her child”.
I’ve no doubt Scientologist feel bringing their children up in that ‘Church’ is doing the best for them.
Stacey – Guest Blogger is parent to an autistic person yes. I am too. What I find sad is that no one who knew Mary on these groups said ‘woah Mary, you’re behaving like someone with Munchausen’s Syndrome. Stop!’.
Kev, children with all sorts of disorders are given meds to try to help their symptoms to help them lead more normal lives. Many times these are off label. People are used as guinea pigs every day. Any new med prescription or OTC, any new vaccine, anything new….someone is a guinea pig.
What if Mary had test results showing her son’s immune system was deficient and he need the IVIG, that he had a yeast over growth and needed diflucan, nystatin and probiotics (which are all over the place as “healthy additivies” to common foods), and blood/urine/hair tests showing heavy metal toxicity.
If a typical child showed the same test results, would the mother be wrong in treating them?
Stacey, take a look at the list Saul was forced to take. Now name me one person you know who takes meds even approaching that list. Off label use is one thing. That child had more in common with force fed foix gras.
Stacey – that would depend on where the test results came from. If it was one of the labs that support the quacks (Great Plains etc) then I would afford them no weight at all.
FWIW, those groups are not closed groups. Emails sent there are not like emails sent privately. The EOHarm description explicitly states:
Stacey – You’re equating the opinion of a trained professional mainstream doctor to that of a bunch of frantic groupthink mothers via the internet. The kid in the email quotes is being abused. Get over yourself and think about recalibrating your mommy instinct.
you’re talking over 6 years Kev. And for all you know the kid took something once and never again, or for a week and never again. The writer is making it sound like this is what the kid takes every single day.
And why this one person. There are hundreds, thousands even on the yahoo lists. And this one seems on the verge of a breakdown as per the first post dated last month. Why not contact the mom privately and offer help, rather than post something like this that could really just push her off the edge. Why not talk her off the ledge instead of daring her to jump for being so horrible and trying to help her kid in ways you don’t approve of.
And for all you know Stacey they were taken every day. I know a guy who gave his ASD child over 20 ‘treatments’ every day. And even if its only 1 at a time, thats 1 too many for dangerous treatments with no established efficacy.
As for why this person, ask Guest Blogger. And how do you know Mary hasn’t been contacted? And even if she had, would you be able to be talked down by the likes of ‘cowards’ like Guest Blogger (quoting Jennifer above) or would you stick to your guns?
The reason this post was published here (as oppose to written) was to highlight the frightening amount of hurtful group think that goes on at childrens expense. If its helped disuade just one parent from these extremist groups then Guest Blogger has done a great thing.
What really caught my attention was the attitude towards special education. Mary indicated that being in special education precluded a child growing into his or her potential, graduating, entering college, etc. I teach college-level courses, and I have several students who have IEPs still through the school system- yes, that means they are taking college classes, are still considered secondary-school students and receive special education services! Special education is about providing kids with supports they need to learn, not about them languishing in some hidden nether-world.
What Mary really needs is a respite worker. Unfortunately, they are incredibly hard to get. After all, who will pay for it? We don’t do biomed, but even so, speech therapy is $90 an hour, occupational therapy is $150 an hour, and ABA was running us $95 an hour (I understand its higher now). Medical insurance doesn’t cover respite. Are you working to pay for therapies? That income often precludes you from qualifying for waivers that would help with respite. Cost of respite here? $40 an hour, 2-hour minimum. How often can people afford that? Yet having such a worker 2-3 times per week for those minimum 2 hours would probably make a huge difference to Mary, and ultimately to her children.
wow are you so off base! first off if your child had cancer or some other incurable disease would you not do search for answers? biomedical is working for THOUSANDS of families out there bring GREAT results! autism has no answers presented by mainstream medicine! and yes there are aspies out there that can fuction great but this child you are speaking of is NOT aspie clearly he is much lower functioning! I myself have a son on spectrum who was dxed as low functioning autism at age 22 months. after having a reaction to vaccinations at 12 months old. he was tested before hand with parents as teachers doing developmental testing every few months and scored 6 months advanced just weeks prior to his 1 year old shots. with in 7-9 hours after his vaccinations developed a seizer disorder and lost all his lang, couldn’t respond to his name, play with toys, and lost motor skills, and became extreamly limited in what he would eat (ending up only doing a gallon of milk a day, and eating ONLY gram crackers and animal crackers.) he was having 80 plus seizers a day and sat around drooling and spinning a phone for 8 plus hours and if you stopped him he would start bashing his head on the floor, walls, tables what ever he could find and would knock himself out. we retested him 2 weeks AFTER his shots in shock of what had happened to our son and his loss and on retesting tested out at 2-4 months age development, loosing 14-16 months development with his vaccinations, and the ER log even put vaccation reaction in our chart! 8 month later speach therapist were ready to throw in the towel, and an OT handed us a book which we read cover to cover called biomedical treatments of autism and PDD by dr shaw and started the diet the next day. in 24 hours our sons self abuse stopped, eye contact came back and seizers stopped! the day we tried DMG our speech therapist ASKED Us what changed because our son went from a 2 min attention span to 45 min. and in 8 hours had 8 words. on second dose he had his first sentence of love ya mama. our sons dx od autism was reduced to PDD and only qualified by 1 point for that in oct of 2007. and the label they told us could go either way from PDD to NT (nurotypical Normal) yet due to PANDAS we hold the label so that if he regresses we can still access services. which by the way your “mary” child sounds like a classic PANDAS kid as well.
trying to find answers for your kid is BEING A GREAT PARENT! not resting to improve the quality of life is our job! we coud have just accepted our sons autism, and he would have a miserable and sad life! our choice to branch out and find answers, and solutions to be willing to go into debt has made all the difference in our sons life. he is mainstreamed and has friends, relationships with his siblings, plays with toys like other kids now, not sitting a spinning a phone all day. he can carry on conversations with others, play games with people, bath himself, is potty trained, learning to cook, clean, and care for himself and help with younger kids and learning independant skills that would have others wise not been part of his life and indendance woudl have never been there with out the sacrifice of being a family and exploring the great options of biomedical! I pray many families find HOPE In the world that is out there. and it doesn’t lay in being run over by autism just accepting it! it’s in fighting it and finding a way to help your child have a better life. after all why is it that therapies are ok to give and help or med but never natuarals. I always find that humorous!
and if Mary is just this close to killing herself, and does so because of it, is it worth it
And if she kills herself because none of these fantastic ‘treatments’ did a damn thing except hurt her boy and make her broke was it worth it? Put that question to DAN or Andy Cutler eh?
I agree with much of what James says..Who doesn’t want the best for their child? There is a line that is getting blurred though..when best for their child really means best for the parent. I understand that line..I have stood on it. Thankfully, I didn’t have a computer at the time.When my oldest(now almost 11) was diagnosed with PDD(nos), I had absolutely no idea of what to do and of how to help him. I remember feeling very powerless-here I was his mother-the person who is supposed to take care of him and guide him and I didn’t know how. Had I had access to the internet..I most probably would have been lead to the above mentioned sites. I like to think that I would have still worked with my boy the way that we have instead of biomedically-but honestly can’t say what would have happened. I was so eager to do all that I could-would I have been swayed? I wonder how many parents-who have the best of intentions for their children wind up being sucked into that vortex of woo? Because at first glance it can appear to be very convincing. My heart goes out to the newly diagnosed-there are a lot of scary sites out there..
I found The woman “Mary’s” words to be horrifying. She is so consumed by the thought of “recovery” she doesn’t see what is in front of her-a human being, not a project, or a set of symptoms-a person. I wonder how her son views himself.
I think that it would be wonderful if a site were created to aid in the “recovery” of parents.
I don’t even have to read the words on these comments to know who the woo acolytes are. Just look for those exclamation points and all caps.
This is a fantastic tracing of (a) the development and diagnosis of autism and (b) a fairly typical response on the part of a subgroup of parents to their child’s diagnosis. I also like the yahoo group summaries. I note that this child’s signs manifested at age 7 months, based on the mother’s descriptions. I also note the frequent use of “I, I, my, I, my, I.” Who’s it all about, really? That interesting child who obviously really needs his mother there, loving him rather than shoving pills down his throat or packing him into a hyperbaric chamber? Not really. Yes, I’m being judgmental. This kind of stuff is just painful to read. It makes me ache for the one person in all of this who has no choices.
I would think that there are alot of “Mary’s” posts are left out and that you haven’t gotten the whole picture. Until you have a child with autism and feel the full weight of what that means you have know idea. Until you have seen the changes from a child who won’t even look at you to one that says “Luff you, Mommy” within 2 days of starting the GFCF diet, you don’t know. Until you have worked day by day for little victories and then added a supplement and seen huge victories, you don’t understand. Or a mom that is desperate for some sleep and at the ropes end try melatonin with her child and can help that child understand how important that sleep is for everyone. What you didn’t post is the hours of individual one on one work helping her child learn things that didn’t come naturally, like what a toilet is. After years and year of cleaning up messes that would make anyone throw up. Don’t discount the changes she and probably other saw soon after she added some of these supplements. Each cure or treatment for a disease has come under attack at some time. Diabetics have to give themselves insulin, Cancer patients undergo radiation with huge side effects. Para-paraplegics undergo strenuous day to day physical therapy. Where are the “quacks” that came up with that stuff?
Why is it is so hard to think that possibly through understanding the kind of foods we put into our bodies, and trying to add the nutrients that our bodies need, or killing harmful bacteria or viruses, or giving some extra time to a child to help them learn is bad? When you post this type of article, please include some real compassion and make sure that you have the whole story. Don’t think for a moment that this child was not loved and cared for. Mary already has more guilt than you can every imagine all by herself. Judging the mother does more harm than good and it is her child that pays for it. As for vaccines, why is is so hard to imagine that when you inject large quantities of different substances into the body that SOME individuals might react in a negative way? I have not heard one parent say I don’t want to give my child vaccines because I want them to have the measles. We want, just like you do, to be careful of what we put in our children’s bodies. Time will tell if this woman is a fanatic or progressive for her time.
Stacey wrote: “you’re talking over 6 years Kev. And for all you know the kid took something once and never again, or for a week and never again. The writer is making it sound like this is what the kid takes every single day.”
Well, “Mary’s” son has had, by her own admission, at least 50 rounds of Andrew Cutler chelation protocol. Let me quote from the FAQ on the A-M site: “DMSA or LA must be given in small, frequent doses (every 3-4 hours, even at night) over several days to be effective. . .Chelation should be done in cycles of at 3 to 7 days on the chelator, followed by at least as many days off as a rest period.” So, let’s take an average round of 10 days (5 days on, 5 days off). 50 rounds comes out 500 days, or well over a YEAR of continuous chelation. And that’s not including the DAN! (CK2) protocol, which Mary was also following.
Mary owns her OWN HBOT machine. Do you think she bought that so that she could only put her kid into it once?
Myjoystewar wrote: “I would think that there are alot of “Mary’s” posts are left out and that you haven’t gotten the whole picture. Until you have a child with autism and feel the full weight of what that means you have know idea.”
Well, Myjoystewar, I do have a child with an ASD.
And I have read a very large number of Mary’s posts. Her love for her child comes through very clearly, as indicated in one of the quotes I posted. But what I don’t see in any of Mary’s posts is that these “treatments” are really helping her child. In fact, he seems to be in a much poorer state than he ever was before she started “treating” him. And make no mistake, her son is a wonderful kid, with a lot of gifts. He doesn’t deserve this.
There are always 2 sides to a story. I think it is wrong to cut and paste someone else’s words without their permission. I think vaccines can injure some children and that injury may look like autism. I think my child does not fall into that category. I am not anti-vaccine, but I do think vaccines need to be looked at more carefully. Not everyone fits a standard of care and what may help one person may be harmful to another. I don’t want to cure myself or my son of autism. I would like to be as healthy as possible. I have a not well understood auto immune disease, for which mainstream medicine has few answers or treatments. I use biomedical interventions for my son and myself. I do it because it works. I stumbled across this journey quite by accident, not because I read some website and took medical advice from a stranger on the internet. My doc suggested dietary changes to help my nursing baby and it worked for both of us. I see nothing wrong with eating natural, whole foods and taking the nutrients that may be deficient in your diet. I see nothing wrong with treatments to address real medical problems that seem to be ignored simply because a child has autism. It is medical neglect to ignore chronic health problems simply because a child is autistic. I actually replied to the August 2009 post that this is all centered around and suggested that she help her self so she could be the best for her child. I have been through dark times parenting 2 very difficult special needs children. I never stopped loving them and I never did anything for them that I did not research, seek opinions from medical staff and trusted friends, and decide on my own motherly instincts what was the right thing to do. I don’t have to prove myself to anyone. My husband and I are the ones who choose what is right for our children, not the author of this blog, not the government, not my mother-in-law, not my neighbor, not a yahoo group’s members.
What Guest Blogger did was substantiate some of the arguments made earlier. A noteworthy example was written by Shannon des Roches Rosa, the mother of a boy with autism. The Rosa family tried the biomedical approach,and gradually backed away. Shannon published “Identifying and Avoiding Autism Cults” at BlogHer http://www.blogher.com/identifying-and-avoiding-autism-cults
Another “recovered” biomedical parent is Jim Laidler, MD. He published Through the Looking Glass: My Involvement with Autism Quackery in 2004. http://www.autism-watch.org/about/bio2.shtml
Contrary to what JenniferL, This is ridiculous & Stacey wrote, Guest Blogger was doing the sort of patient, in-depth investigative reporting that is so absent from Age of Autism.
In response to “guest blogger” or let me rename you…Lurker. You say this…
“The GFCF diet appears relatively harmless, however, it can result in weakening of bones due to nutritional deficiencies.”
A woman I know, who’s daughter is undiagnosed Autism, has recently had a visit with her own doctor, for herself, and that doc (now mind you an “regular” (MD) doctor) said he wanted to run blood work to check this woman for food allergies/sensitivities. After the results came back the tests showed she was sensitive to wheat, soy, corn, and casein. He told her her quality of life would be better if she changed her diet. He also suggested she take probiotics and digestive enzymes.
I told her that in many cases if the parents have food allergies the child(ren) do as well. I also told her since you are going GF/CF/SF/CF maybe you could have your daughter try too, a little girl who most days refuses to eat the “normal” food that is presented to her.
Her response…she was not going to deprive her daughter of McDonald’s kid meals.
Now, that to me is an example of a selfish mother. Not the “Mary” you describe in your post.
Lurker, I ask you…do you know anything about being gluten & casein free? Do you know the wonderful grains that are out there and how they are SO much more nutritional then wheat. Do you realize that most “normal” children eat only enriched wheat flour, corn, and rice grains? Do you know the stats on the obesity crisis that the American kids are dealing with? Do you know the nutritional value of a kids meal? Do you know sunflower seeds have way more calcium then milk? Do you know the amount of high fructose corn syrup that is consumed by most American kids each day?
If my child is “sick” in any way. I will do everything I can do make sure they can be as well as they can be. If changing a diet is all you need, great. I feel bad for all YOUR children who could be helped by just a change of a diet. I feel bad that your children must suffer day in and day out because their parents are too ignorant to do anything to help them…its too bad for them you refuse to think outside of the box for the sake of YOUR children.
When my daughter was first diagnosed, I spent some time on the local support group site. When I asked how a clay bath could remove heavy metals through seven layers of dermis and through cell lipid bilayers I was attacked by people like Stacey. I had a PDD kid and degrees in tox and chemistry, so I was as welcome as Richard Dawkins at a revival meeting.
We used meds for anxiety and sleeping, but always using the least amount possible and stopping as soon as we could. Treatment is one thing, forcing the whole GNC down a kids throat is another. We moved to a school district with excellent special ed. By 4th grade, she was mainstreamed with minimal support. She is now on the honor roll in 7th grade. She is still autistic. She is a great kid, but some people will never accept her right to a place in society because she is different.
As someone who has worked in clinical trials at a cancer center and watched real IRB’s work, what is happening on these boards is a violation of the rights of human medical subjects. It is on the level of exorcism for epilepsy and prayer for diabetes.
wow you would rather this mom kill herself and leave the kid to themself with out a parent then for them to try and find answers and try things that may bring benifit! that in itself tells me of your character! your a sad person. EVERY parent wiether one of an autisic child or not has bad days and can lash out. using those words in a down time doesn’t make for a bad parent.
I wish there were cures for poor reading comprehension skills and an incapacity for critical analysis. Anyone know of any woo for that?
Ruth – I hope people will take your comment to heart. It’s all about belief, gut instincts, and arrogance trumping science and reality for these people.
What is the original source of this information? Woo sites? That would be unfortunate.
The recommended daily allowance of calcium is about 500mg for children 1 to 4, and 800mg for children 4 to 8. A cup of whole milk already provides about 400mg of calcium.
According to this site (probably a woo site), a cup of sunflower seeds provides 174mg of calcium. Are we to suppose that children 4 to 8 should be eating 4 or 5 cups of sunflower seeds every day? That makes no sense.
Autistic children are already not getting enough calcium (Herndon et al. 2009.) I don’t think it’s prudent to remove milk from the diet of autistic kids. Sometimes a diet is not “just a diet.”
I used to post on a listserv for my son’s disability for almost ten years. At first it was a great support group to find out about real therapies (like what to look for in a speech therapist), how to navigate special education red tape, what to expect from a neurologist and how to deal with insurance companies.
Then it changed.
Usually it was someone asking about primrose oil, or other essential oils. Then there would be a post about cranial sacral therapy… but it got worse. Lots of people were starting to post about the supplements they bought, and then the chelation advocates started to take over.
At first it was okay to challenge these folks and ask for more evidence. Sometimes those of us who asked for evidence were thanked by new parents because they felt they weren’t doing all they could if they did not buy Bradstreet’s supplements or Buttar’s transdermal chelation cream.
Then the advocates of the supplements got more strident and would post nasty grams to anyone who dared question them (one mom who had real medical credentials was told she did not know anything!). They even tried to get members who did not agree with them kicked out off the listserv. Finally, I had enough and just quit the listserv about five years ago.
But before I did, I saw plenty of emails just like those posted above. The lists of supplements, the medications and the trips across multiple states to get invasive treatments like chelation though IV (this was before the child died in an office getting with that kind of treatment).
What the Guest Blogger posted is not unique, and not even unique to autism. I bet if you looked into some of the bit.listserv.randomdisability that are archived in Google Groups (I used to look through them when it was Deja-News), or even Andy Cutler’s open Autism-Mercury group you will find similar posts by other parents.
Many of you express your concerns for “Mary” and her child. You are concerned with the long list of primarily NATURAL & NON-TOXIC vitamins and supplements that, according to you and science, have no proven effectiveness. If you are concerned with that long list then you should ALL agree that the below long list of known nero-toxins INJECTED repeatedly into children and babies all over the world should be cause for concern too, right???
Albumin, egg (ovalbumin),Albumin, human serum,Albumin, or serum, bovine,Aluminum hydroxide,Aluminum phosphate,Aluminum potassium sulfate,Amino acids,Ammonium sulfate,Amphotericin B, Ascorbic acid
Bactopeptone,Beta-proiolatone,Benezthonium chloride,Bovine protein
Brilliant green,Calf skin,Chick embryo fibroblast tissue culture
Chick kidney cells,Chicken embryo (fertilized egg) ,Chlortetracycline,Cohen-Wheeler, modified (pertussis component)
DNA,Ethylenediamine-tetraacetic acid sodium (EDTA), Egg protein,Formaldehyde, formalin,Gelatin Gentamicin,Glutaraldehyde, Glycerin,Glycine,Human diploid tissue culture, MRC-5,Human diploid tissue culture, WI-38,Hydrochloric acid,Lactose,Lathinan medium derived from bovine casein,Linggoud Fenton media containing bovine extract, Magnesium sterate, Monkey kidney tissue culture, Vero (Vervet or African green monkeys, Monosodium glutamate, Mouse brain, Mouse serum protein, MRC-5 cellular protein, Mueller-Hinton agar medium, Mueller-Miller medium,Neomycin, Phenol, Phenol red (phenolsulfonphthalein)
2-Phenoxyethanol, Phosphate buffers (eg, disodium, monosodium, potassium, sodium dihydrogen phosphate), Polydimethylsilozone
Polyethylene glycol p-isooctylphenly ether (Triton X-100), Polymxin B, Poloxyethylene 9-10 nonyl phenol (Triton N-101, octoxynol 9), Polysorbate 20, Polysorbate 80, Potassium glutamate,Phesus fetal lung tissue culture,Sodium acetate, Sodium borate, Sodium Chloride, Sodium hydroxide, Sorbitol, Soy peptone broth, Stainer-Scholte medium, Streptomycin, Sucrose, Synthetic/semi-synthetic, Thimerosal, Urea, Vitamins, unspecified, Watson-Scherp medium, Yeast or yeast extract (typically Saccharomyces cerevisiae), Yeast protein
Right???
Many of you express your concerns for “Mary” and her child. You are concerned with the long list of primarily NATURAL & NON-TOXIC vitamins and supplements that, according to you and science, have no proven effectiveness. If you are concerned with that long list then you should ALL agree that the below long list of known nero-toxins INJECTED repeatedly into children and babies all over the world should be cause for concern too, right???
Albumin, egg (ovalbumin),Albumin, human serum,Albumin, or serum, bovine,Aluminum hydroxide,Aluminum phosphate,Aluminum potassium sulfate,Amino acids,Ammonium sulfate,Amphotericin B, Ascorbic acid
Bactopeptone,Beta-proiolatone,Benezthonium chloride,Bovine protein
Brilliant green,Calf skin,Chick embryo fibroblast tissue culture
Chick kidney cells,Chicken embryo (fertilized egg) ,Chlortetracycline,Cohen-Wheeler, modified (pertussis component)
DNA,Ethylenediamine-tetraacetic acid sodium (EDTA), Egg protein,Formaldehyde, formalin,Gelatin Gentamicin,Glutaraldehyde, Glycerin,Glycine,Human diploid tissue culture, MRC-5,Human diploid tissue culture, WI-38,Hydrochloric acid,Lactose,Lathinan medium derived from bovine casein,Linggoud Fenton media containing bovine extract, Magnesium sterate, Monkey kidney tissue culture, Vero (Vervet or African green monkeys, Monosodium glutamate, Mouse brain, Mouse serum protein, MRC-5 cellular protein, Mueller-Hinton agar medium, Mueller-Miller medium,Neomycin, Phenol, Phenol red (phenolsulfonphthalein)
2-Phenoxyethanol, Phosphate buffers (eg, disodium, monosodium, potassium, sodium dihydrogen phosphate), Polydimethylsilozone
Polyethylene glycol p-isooctylphenly ether (Triton X-100), Polymxin B, Poloxyethylene 9-10 nonyl phenol (Triton N-101, octoxynol 9), Polysorbate 20, Polysorbate 80, Potassium glutamate,Phesus fetal lung tissue culture,Sodium acetate, Sodium borate, Sodium Chloride, Sodium hydroxide, Sorbitol, Soy peptone broth, Stainer-Scholte medium, Streptomycin, Sucrose, Synthetic/semi-synthetic, Thimerosal, Urea, Vitamins, unspecified, Watson-Scherp medium, Yeast or yeast extract (typically Saccharomyces cerevisiae), Yeast protein
Right???
Jen,
“Albumin, egg (ovalbumin),Albumin, human serum,Albumin, or serum, bovine, Aluminum hydroxide,Aluminum phosphate,Aluminum potassium sulfate,Amino acids,Ammonium sulfate,Amphotericin B, Ascorbic acid…”
I will not be frightened by chemical names or sera. Just not.
To Joseph, I apologize…I mis-wrote…I meant to type “Sesame Seeds”
Oops, sorry for the mistake.
However, I will say….what do those do if they are allergic to milk? Should they just lay down and die cause they can’t have milk??? My son can’t have milk, my brother couldn’t have milk. And they are healthy. We supplement with foods and calcium vitamins.
What are vegans to do with out milk??? The milk industry has had a huge hand in promoting milk to be good for the body. But the hormones and such that are injected into the cows. Also, current studies suggest milk and milk-based products are robbing the body of calcium. We are the only society that consumes milk, large amounts in that, and are the only society that suffers from Osteoporosis.
You are right, maybe you would have to consume large amounts of sesame seeds in order to match a glass of milk but milk isn’t all that its cracked up to be and there are PLENTY of other calcium sources such as sesame seeds, dark-green leafy veggies, other enriched “milks” like almond, rice, Vance’s Dari-free, etc.
I apologize if this posts twice. The first version didn’t go through.
Someone asked if I had contacted Mary and offered support after I read the preamble to this piece. What would you have had me say?
“I think you should stop all these ridiculous “treatments” immediately. If I was forced to undergo regular intravenous treatments, I’d be screaming, howling, humming, and screeching too!”
Can you imagine how that kind of comment would be received in the cozy echo chamber of A-M? Other people did reply, and while one person did suggest stopping everything for a little while and starting over, most of the responses were simply to try more woo – antifungals, diet, and herbal parasite treatments were suggested. There’s no dissent allowed in these groups. It’s an article of faith that 1. autism is caused by vaccines and 2. children are recovering with biomedical “treatments”. In the real world, there is no science-based evidence for either of these tenets.
This is my problem with reading these groups. One can not show dissent or question the “authority” in these groups. I know. I’ve tried.
The problem is, dissent can be saying, “you know, throwing up for weeks is not a good sign. Perhaps you should take your child to a doctor”.
Many of you have concern with the natural and non-toxic vitamins and supplements “Mary” is “subjecting” her child to however, please take a look at the very long ingredient list on the below link and tell me how you feel about children being repeatedly subjected to those known nero-toxins…being injected with chemicals?
http://www.vaccineawareness.org/index.php#44
Maybe some parents out there aren’t taking the right steps when it comes to biomed treatments but you can’t be upset with a parent giving her child natural supplements when you are ok with the crazy toxins in each vaccine a child is given.
How could you have a problem with Nystatin, Enhansa, Epsom Salt, B12, etc and not have a problem with cells from aborted fetuses, phenol, formaldehyde, and thimersol????? That is just mind-boggling.
What pathetic, tragically misguided person decided to filter through over three thousand and five hundred posts and pick the one fifth of one percent of them to comprise this message?
By the authors own admission, the person in question has over 3,500 posts; yet we are given a select sampling of seven, over five years of time to paint the picture before us. The irony is so rich that this post would come in a forum where the accusation of cherry picking data is first and foremost in the aresenal.
How many posts did the author read from this very same person where they said, ‘Thanks for listening and helping me out last week, my little guy is feeling a lot better today and I’m doing better too.’ or ‘Here is a story I wanted to share with you about how well my son did at school today, two days after we started intervention X.’ and decide that they didn’t make the cut? These types of messages are just as numerous on these types of discussion boards.
We have other posts here, today in fact, bothered by an unrealistic and incomplete portrayl of autism, and one post later, we have exactly the same thing; an ultra micromanaged slice of information cut down as precisely as a diamond and presented as reality.
It is utter hypocrisy from the mouths of those on self styled pedastals of righteousness. For shame.
– pD
jen – no one would argue that a child who has lactose intolerance or an actual allergy to milk should still drink lactose-containing milk. In that case, as in all real life situations, there’s a balance between risk and benefit. If you want to argue that an autistic child has one of these conditions, or celiac disease, and genuinely feels better on a milk-free diet, I wouldn’t argue with you. The problem is that GFCF is held up as a cure for autism, not for lactose intolerance, milk allergy or celiac. Most autistic kids aren’t even tested for those conditions before they are put on the diet.
And if they don’t improve on GFCF, then it’s the parent’s fault. They aren’t being careful enough. They are using non-GFCF shampoo, play-doh or bandaids. They aren’t trying hard enough. It’s the same with all bio-med treatments. If it isn’t working, it’s because you haven’t tried enough things, not because the things aren’t working. This lead to terrible guilt on the parent’s part. Being called a refrigerator mother is nothing in comparison to the guilt some of these parents, including “Mary”, feels when their child doesn’t recover.
Many of you have concern with the natural and non-toxic vitamins and supplements “Mary” is “subjecting” her child to however, please take a look at the very long ingredient list on the below link and tell me how you feel about children being repeatedly subjected to those known nero-toxins…being injected with chemicals?
http://www.vaccineawareness.org/index.php#44
Maybe some parents out there aren’t taking the right steps when it comes to biomed treatments but you can’t be upset with a parent giving her child natural supplements when you are ok with the crazy toxins in each vaccine a child is given.
How could you have a problem with Nystatin, Enhansa, Epsom Salt, B12, etc and not have a problem with cells from aborted fetuses, phenol, formaldehyde, and thimersol????? That is just mind-boggling.
Nicksgirl,
I am not being dragged into the “look at the scary ingredients in vaccines” debate. Nothing in vaccines scare me. Vaccine preventable diseases scare me.
I used to read some of the biomed groups. I had to stop because I couldn’t bear to read the obvious adverse reactions that some kids are going through. Those are always brushed aside.
I’d have a lot more respect for the biomed movement if they had some way of reporting the possible adverse reactions to a central body and making that information available to parents.
Mmmm, let me think…if I’m a kid or a parent with children…do I want the list you provide above or the below list…mmmm, let me think (insert “Jeopardy” music here)…naaaa, I’ll go with the list above thanks!
Albumin, egg (ovalbumin)
Albumin, human serum
Albumin, or serum, bovine
Aluminum hydroxide
Aluminum phosphate
Aluminum potassium sulfate
Amino acids
Ammonium sulfate
Amphotericin B
Ascorbic acid
Bactopeptone
Beta-proiolatone
Benezthonium chloride
Bovine protein
Brilliant green
Calf skin
Chick embryo fibroblast tissue culture
Chick kidney cells
Chicken embryo (fertilized egg)
Chlortetracycline
Cohen-Wheeler, modified (pertussis component)
DNA
Ethylenediamine-tetraacetic acid sodium (EDTA)
Egg protein
Formaldehyde, formalin
Gelatin Gentamicin
Glutaraldehyde
Glycerin
Glycine
Human diploid tissue culture, MRC-5
Human diploid tissue culture, WI-38
Hydrochloric acid
Lactose
Lathinan medium derived from bovine casein
Linggoud Fenton media containing bovine extract
Magnesium sterate
Monkey kidney tissue culture, Vero (Vervet or African green monkeys
Monosodium glutamate
Mouse brain
Mouse serum protein
MRC-5 cellular protein
Mueller-Hinton agar medium
Mueller-Miller medium
Neomycin
Phenol
Phenol red (phenolsulfonphthalein)
2-Phenoxyethanol
Phosphate buffers (eg, disodium, monosodium, potassium, sodium dihydrogen phosphate)
Polydimethylsilozone
Polyethylene glycol p-isooctylphenly ether (Triton X-100)
Polymxin B
Poloxyethylene 9-10 nonyl phenol (Triton N-101, octoxynol 9)
Polysorbate 20
Polysorbate 80
Potassium glutamate
Phesus fetal lung tissue culture
Sodium acetate
Sodium borate
Sodium Chloride
Sodium hydroxide
Sorbitol
Soy peptone broth
Stainer-Scholte medium
Streptomycin
Sucrose
Synthetic/semi-synthetic
Thimerosal
Urea
Vitamins, unspecified
Watson-Scherp medium
Yeast or yeast extract (typically Saccharomyces cerevisiae)
Yeast protein
pD – I’ve read hundreds of “Mary’s” posts. Yes, sometimes she feels like there are some small gains by using the treatment du jour. But let’s look at all she’s done, and where her son is at present.
To help you with a sense of balance, I’m going to quote another post where she does talk about positives. After reading a very large number of her posts, I’d say that this is a typical positive post. And this is for a “treatment” on which she is willing to spend $2800 a month.
“A few things I’ve noticed, and it may or may not be from the IVIG.
His screaming has decreased. He had some screams that are clearly tics and some that are definitely behavioral. Both have decreased but the tic ones decreased more.
Slight improvement in eye contact.
In the last week or so he’s sillier and more playful. It’s easier to get him to laugh and engage in something silly like making faces back and forth and he seems to get a bigger kick out of me being silly.”
nicksgirl,
DMSA is hardly a natural non-toxic vitamin. Nor is Actos, Galantamine, nystatin, flagyl, nizoral, OSR or DMPS.
Please read this link and see how you feel about OSR after that.
http://lizditz.typepad.com/i_speak_of_dreams/2008/08/a-new-treatment.html
OSR is a synthetic chemical developed for removing heavy metals from waste-water.
nicksgirl, I have no problem with the ingredients in vaccines because I know they have been tested (oh, and your list is out of date by several years, thimerosal was removed from pediatric vaccines several years ago). There is a great post about those “toxins” on ScienceBasedMedicine, which I will link to when it comes back up (in the mean time there is review of that list).
The various odd treatments, not so much. And it is not so much the supplements, the oils and other stuff… it is the huge amount of expense, quantity and lack of evidence.
Then there is the horrible sadness one gets when you realize that someone is using the desperation in these parents to push those supplements. On those supposed support groups parents are made to feel that they aren’t doing enough if they don’t buy into the “use this and your child will be cured” ideology. Someone is selling the stuff, and at the prices they charge it is not for humanitarian reasons.
Actually, my three teenage children received their fall flu shots yesterday. This is especially important for my oldest disabled child since he has a severe genetic heart condition that makes him particularly vulnerable to illness.