Search results for 'DAN!'

Bogus Urine Metals Testing Fails In Vaccine Court

13 Mar

The Thimersoal “test cases” in the OAP relied on bogus urine mercury testing. Among many other common problems the petitioners had in providing any sound scientific support for the notion that mecury can cause autism, that, was at least in part, the apparent conclusion of all three of the special masters.

I just skimmed through the recent decisions by the US Court Of Federal Claims in the Thimerosal “test cases” that were part of the Omnibus Autism Proceeding, and the expert testimony provided by Dr. Brent (respondent) in this regard is pretty clear:

From the Mead Decision

When specifically asked about the urine mercury tests that were performed on William, Dr. Brent said that the tests “showed pretty much exactly what you’d expect for the normal population, that their unprovoked specimens are normal. Yet, when they give chelators, most of [mercury excretion results] are increased.” Id. at 1852-1853. Dr. Brent expressed a concern about the use of data in this way to suggest that a condition exists that, in fact, does not. See id. at 1853. He stated that “it’s data like this that has been used as an excuse to subject these children to chelation therapy where the data supports [a finding] that their urine mercury status is totally normal.” Id. at 1853.

From the King Decision

Moreover, Dr. Brent explained that when the results of mercury testing of Jordan, both provoked and non-provoked, are viewed in their entirety, they are exactly what one would expect from an individual without any mercury-related problem. That is, Jordan’s non-provoked test results were within the normal range for non-provoked testing. (Tr. 1852-53, 4340.) At the same time, while his provoked results were outside the normal range for non-provoked testing, that is not surprising since the provocation/chelation process is designed to specifically provoke an increased excretion of metals. (Tr. 1852-53, 4340-41, 4347.) As Drs. Brent and Fombonne explained, administration of a chelating agent to anyone, autistic or not, mercury-poisoned or not, will always be followed by increased excretion of mercury.118 (Ex. M, p. 74; Tr. 1852, 4340-41, 4343.)

Interestingly, the added scientific clarity of the special masters with regard to bogus urine metals testing is also present to some degree in all three test cases:

Here’s one example from the Mead Decision

Moreover, a subsequent study, as reported in the 2007 Soden article filed as RMRL 458,150 could not confirm the 2003 Bradstreet study results. See Mead Tr. at 1844. The investigators found that “DMSA provoked excretion testing did not produce evidence of an excess chelatable body burden among the autistic [study] participants.” RMRL 458 at 480. The investigators concluded that “[i]n the absence of a novel mechanism of heavy metal toxicity or an alternate therapeutic action of chelators, the data presented provide[d] no justification for chelation therapy for the [study] participants.”

Many will remember the conclusion of Soden et al.

“In the absence a proven novel mode of heavy metal toxicity, the proportion of autistic participants in this study whose DMSA provoked excretion results demonstrate an excess chelatable body burden of As, Cd, Pb, or Hg is zero.”

But perhaps the most interesting of all, is the common thread that the reliance upon the bogus mercury testing seems pretty much acknowledged for what it is by both the special masters and the petitioners’ expert:

From the Dwyer Decision

Doctor Mumper’s willingness to rely on Colin’s mercury test results as evidence of high levels of mercury in his body was particularly troubling. She admitted that his results were not typical of those she saw in other autistic children. She admitted that she knew of no research into normal mercury excretion levels after chelation against which Colin’s one positive mercury test could be measured.741 It appeared that regardless of the results for mercury levels, Dr. Mumper was willing to opine that they reflected mercury’s role in ASD.

From the King Decision

In short, a careful analysis of the record demonstrates that there is no valid basis for Dr. Mumper’s view that the results of mercury excretion testing on Jordan King offer support for a conclusion that thimerosal-containing vaccines played a role in causing Jordan’s autism. To the contrary, the evidence supports a conclusion that Dr. Mumper’s reliance on such mercury tests has no basis in science or logic. Indeed, upon cross-examination even Dr. Mumper acknowledged that there is no particular profile or pattern of post-provocation test results that points to a finding that a child has mercury-induced autism. (Tr. 1555-60, 1568-69.) When pressed, Dr. Mumper could not even suggest an example of any type of result on a post-provocation mercury urine test that would not, in her analysis, support a claim of mercury-induced autism. (Tr. 1558-60.) Dr. Mumper’s analysis in this regard was illogical, and completely unpersuasive.119

Yep, regardless of the results of a scientifically meaningless test, it’s the mercury. Right.

Remember, these were the three Thimerosal “test cases”, presumably chosen by the Petitioner’s Steering Committee (PSC) because they offered the best opportunity to introduce good, and representative scientific evidence for the hypothesized role of thimerosal in the etiology of autism. It looks like they failed miserably, and this doesn’t seem surprising when it’s clear the cases leaned on at least one form of laboratory testing that’s clearly scientifically meaningless.

It won’t be surprising when many of the die-hard anti-vaccine and “alternative” autism medicine brigade ignore the fact that bogus urine toxic metals testing just had a bright light shined on it by the vaccine court. They’ll be likely to claim some form of conspiracy or politics about the cases, despite the fact that the spotlight revealed an apparent decision-making tool of many a “DAN! doctor” to not only be worthless in medicine, but also worthless in court.

On a related note, there has been recent news that a couple of “DAN! doctors” are facing a lawsuit in which bogus urine toxic metals testing is called out directly. Aside from numerous other problems they face in the complaint, it should be interesting to see how the defendants (Dr. Dan Rossignol, Dr. Anjum Usman, and Doctors Data, Inc.) explain the potential role of comparing chelator-provoked urine metals levels to a non-provoked reference range. If the three test cases in the OAP are an indication of the state of actual scientific support for such testing, the defendants would seem to have plenty to worry about.

Additional reading:

Mead v. Secretary of Health and Human Services Case No. 03-215V
King v. Secretary of Health and Human Services Case No. 03-584V
Dwyer v. Secretary of Health and Human Services Case No. 03-1202V
Thimerosal-Autism Test Cases Dismissed
Doctors sued over ‘dangerous’ autism treatment
Suing DAN! practitioners for malpractice: It’s about time
How the “Urine Toxic Metals” Test Is Used to Defraud Patients
24-hour provoked urine excretion test for heavy metals in children with autism and typically developing controls, a pilot study

Giving up on DAN. A personal story.

5 Dec

The recent discussions on the series in the Chicago Tribune have been therapeutic for me.

My 16 year-old child is severely effected by autism. Xe is self-injurious, destructive and aggressive. Xyr language has never developed past that of a 2 year-old. Outside of the behaviors that come from OCDs, xe is a happy child and a loved child.

Jeff Bradstreet was xyr doctor when we lived in Florida. When I first met Jeff he was on disability and selling vitamins from a small back office in his wife’s dental clinic. He was not yet one of the DAN! leading acts. Secretin was yet to come to the forefront and make the DAN! docs rich.

Jeff Bradstreet was a very nice man and generous with his time. He and I disagreed often with his approach to my child’s treatment. I still trusted the neurologists and the immunologists more than the DAN! docs. When all went the direction of chelation, I took my child away from DAN!, and I never looked back.

I believed my child was injured by xyr vaccinations when xe was 12 months old. I never thought there was a “measles infection in xyr gut” condition nor a mercury toxicity situation. I just thought xe had an autoimmine reaction. I reported xyr vaccines to the FDA in 1996, and I filed a lawsuit as an individual in 199#. Jeff Bradstreet asked me why he was not asked to submit any evidence in xyr lawsuit. I did not want his name on my child’s case.

I appreciate the time and energy you take to expose what should be obvious.

I worked very hard for what I thought would benefit my child. I travelled all over the US with xyr to see doctors and have medical tests done. I brought in experts to evaluate xyr. I hired attorneys for xyr IEPs. I quit my job and focused on xyr and xyr health and education. Part of that was research that led me to walk away from DAN! and all that it offers. I chose not to chelate xyr. I chose no IVIG treatments.

My child is still severely autistic.

So I am offended at comments about parents leading their children down a path to institutionalization. I am offended that parents believe they rescued their children from a life of head-banging and middle of the night laughter. Because as parents and grandparents of autistic children, they should be more sensitive to children who are autistic and display these behaviors. Do not all autistic children deserve to be valued? Are they telling me that my child is less because xe was not “saved”?

“Real children’s lives are consumed” was the battle cry this weekend from Mark Blaxill. What hypocracy. DAN! doctors are experimenting on autistic children everyday.

I don’t post to your website because I don’t write well. But, here is a final comment.

In 1995 my child at age 2 started at a pre-school for autistic children. After a few months, xe was transferred to another classroom because xe was not making the progress of the other children. Those boys were succeeding at picture exchange, following one-step commands, showing skill in expressive language.

The DAN! protocol wasn’t around in 1995. How did those boys make that progress?

Here in the US there is a British writer for The Atlantic – Andrew Sullivan – who has made it his quest to expose Sarah Palin for the absurd fraud that she is. Right now, that is how I feel about Kim Stagliano.

Many years ago I was on the front lines of the anti-vaxers. I would go to DAN! conferences and hang out with Mark Blaxill, Jane El-Dahr, Holly Bortfeld et-al. I called the vaccination program “government mandated child abuse”. Okay, I was excited at the time. But Kevin, I do think the assembly line approach to immunizing children has gotten out of hand. When I lived in Florida, the pediatrician and I agreed after serious consideration that my now 13 year-old child could go without immunizations. He signed all waivers. That was a medical decision between me and a physician. Why does it have to be so regulated and administered by school districts and health departments? (Note this was also 2 years before the hysteria of Wakefield’s paper).

I did believe then, and at times I still believe that my child had a reaction to xyr vaccinations when xe was 12 months old. I have a report dated 1998 from Michael Chez MD stating he is impressed with xyr reaction to the MMR because it could have cause an autoimmune reaction and breakdown of the blood brain barrier. I have always been interested in more research into the autoimmune reaction of vaccination – like that being done by Dr Bonnie Dunbar in Houston. But her work was overshadowed by the discovery of thimerosal in vaccines.

I never believed my child had measles in xyr gut. I never thought xe had mercury in xyr brain.

I met a lot up parents up to 1999 that said their child regressed post MMR. In 1999, I saw a lot of their stories change to meet symptoms of mercury toxicity from Hep B. I saw a lot of parents that did not believe there was a vaccine injury become convinced that there was a vaccine injury.

I heard a lot of parents swear that it was child abuse to give your kids gluten. I read the science that showed the opioid excess theory is total and complete BS.

I’ve had enough of all things DAN!

The Chicago Tribune writes a responsible piece saying that there is no scientific evidence that IVIG works on neuroinflammation. Instead of providing scientific evidence that IVIG works on neuroinflammation the DAN! zealots attack in every direction they can.

Is there a way to stop the junk science?

4 Dec

A recent press release caught my eye. Not for being good, far from it. It is yet another junk science approach to autism.

Perhaps you read it. The title was “Scientific Link to Autism Identified”. In it, a self labeled “think tank” called The Center for Modeling Optimal Outcomes, announced that “homeostasis” was the cause of autism.

The “full” press release is on their website. To the non scientist, especially on a quick read, it sounds convincing. But, in reality, it appears to be written by someone with a high-school biology education.

It has some excellent hooks to convince the casual reader. They present themselves as very successful in a separate field, and claim they stumbled upon a very important idea: that substances within the body exist in pairs. When these pairs are imbalanced, homeostasis is broken, resulting in chronic disease.

Autism, according the “The Center” is caused by an imbalance, or lack of homeostasis, in glycine and glutamate.

How does this cause the condition we know as autism? Unexplained. Somehow, glycine and glutamate “control the rate of cellular absorption”. Absorption of what? Unexplained. How does this cause autism? Unexplained.

But, it all sounds nice and official.

How do glycine and glutamate get away from “homeostasis”? Vaccines. I know, you are stunned that vaccines are implicated in causing autism. The “think tank” looked at the work of Andrew Wakefield and came away with the idea that MMR causes autism. What’s in an MMR shot? Hydrolized gelatin, which, in turn, contains glycine.

Of course, this is an important finding and controversial:

“Undoubtedly, this finding based on the application of the model for homeostasis will cause immense controversy. Our Life Sciences group is prepared to meet with members of the scientific community to explain the model as well as the variables that create the ‘perfect storm’ that results in autism.”

The controversy statement is a good one to make this appear real to many readers.

Perhaps the “think tank” could have done a bit more research into the autism alternative medical community. What are two of the most common supplements recommended by DAN!? TMG and DMG–trimethyl and dimethyl….glycine. Pure glycine is a supplement, sometimes recommended in the autism alt-med world (also here). But, somehow, we are supposed to believe that a small amount in an MMR shot causes the lifelong condition we call autism?

While it appears easy for some to sit back and point out that this press release, this homeostasis model of glycine and glutathione, is junk science, we must also recognize that it is not easy for everyone. The press release is wrapped in just enough jargon to make a convincing argument for many readers.

As Autism News Beat points out,

Health care fraud is a $100 billion a year racket in the US, and the bad guys know about autism.

Is the “The Center for Modeling Optimal Outcomes” part of the “bad guys” or are they just helping them? They don’t seem to be trying to profit from their junk science.

In the end, I don’t really care. I just wish they would take their junk science and apply it elsewhere.

Age of Autism to Autism Families: Make your children suffer

24 Nov

Your pretty red house is engulfed in a roaring fire. You keep feeding the fire. Maybe petrol will help. Pour it on. Maybe some oil. Pour that on too. You don’t know. Nobody knows. Some guy you met on the internet tells you he’s a fireman and that the best way to stop a fire is to try and smother it with bone dry hay.

Your burns are bad. Your kids burns are worse. Do you throw them out of a window where a few other ‘firemen’ are holding on to a sheet made of melting plastic? Or do you push them down the stairs, where the rest of the injured and dead families are?

Thats my response to the utterly asinine response Kim Stagliano posted on the Age of Autism blog today to the Chicago Tribune’s series of articles on the quacks and hacks infesting the autism community. She wheels out the same old strawmen…

That’s my response to the Chicago Tribune accusing us of performing “uncontrolled studies” on our kids. (Our medical doctors are thorough and safe, by the way.)

I know of at least two doctors associated with the biomed movement who are on sex offenders registers. I know of one DAN! doc who is associated with the death of a child. I know of one other who hospitlaised a child. I know another who performed exorcism on autistic kids. I know another who is under investigation for more than one complaint.

And why does it bother journalists like Trine Tsouderos and Pat Callahan that some of us are improving our children’s lives?

I can’t speak for these journalists but I’ll speak as the parent (and step-parent) of two autistic kids. You’re not improving your childs autism. Thats the claim that these journalists are challenging. I challenge Kim Stagliano or Mark Blaxill to show the autism community where a biomed treatment discussed by the Tribune led to a measurable and scientifically documented improvement in their child’s autism. In fact, I can’t think of a child belonging to the founders of Autism FAIR Media, Generation Rescue, Age of Autism, SAFE MINDS or the NAA that has either been cured of their autism or made any sort of progress towards that end result as a sole consequence of biomed treatments. Why? Because in terms of curing/recovering/treating autism *they do nothing* . As a direct consequence of that obvious fact, parents continuing with detox, urine injections, exorcism et al are – as the Tribune indicate – experimenting on their children.

Truth and Consequences – The Anti-Vaccination Movement Exacts a Price

23 Sep

“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 # 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.

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.

Michael Fitzpatrick misrepresented by Age of Autism

15 Apr

Hardly news I suppose but on AoA yesterday Michael Fitzpatrick was misrepresented by someone called Teri Arranga.

Starting off by referring to Mike as a ‘backwoods doctor’ – something of an anti-British slur since Mike is a GP in London (I guess London is a backwoods now to AoA?) she soon went on to pretty much rant incoherently, built a few strawmen and finished off by quoting some other guy also ranting incoherently.

According to Arranga

…backwoods doctor Michael Fitzpatrick blasted Polly Tommey, founder of The Autism Trust, for the current campaign that seeks better supports and services for autistic individuals in the UK…

Hardly. Here’s what Mike led with:

In response to her ‘Dear Gordon’ billboard advertising campaign (see below), you have invited the British autism campaigner Polly Tommey to discuss her campaign with you on Wednesday 15 April. However, in the interests of children and families affected by autism, I hope that you will refuse support for her key activities – upholding discredited links between vaccines and autism and recommending unproven and untested fringe treatments.

Blasting? Good grief, where do these fragrant middle class ladies live? Its a statement of fact followed by a wish. None of it isn’t factual and its pretty much polite and to the point.

The fact is that the Autism File _is_ Tommey’s key activity. The other fact is that it is distinctly pro-extreme biomed and upholds links between key anti-vaccine researchers such as Andrew Wakefield. But Arranga sees some more blasting:

Fitzpatrick also blasted The Autism File magazine for including information about vitamins (oh, mercy me) and advertisements from “suppliers of biomedical products” (though none of them as lofty as Merck/Vioxx and Eli Lilly like Fitzpatrick’s cronies’ medical journals), among other things.

What escapes Arranga’s attention is that vitamins used as part of a quack ‘treatment’ for autism is both physically damaging (back in 2006 Mary Megson reported on the case of an autistic boy who was hospitalised by a DAN! doctor following an overdose of vitamins) and damaging to the future of autism research. Oh, mercy me indeed.

But no, Mike mentions the vitamins in passing. Arranga somehow neglected to mention the 15 page feature on Andrew Wakefield in the current issue of Autism File. It is peppered with ads for treatments from various biomeddlers.

Then we get to the ‘undermining’.

Fitzpatrick is trying to undermine the efforts of Polly and The Autism Trust to improve quality of life for autistic individuals and their families, many in woeful situations of deprivation and stress….Polly Tommey will be having meetings with members of the Prime Minister’s team in advance of the promised meeting with Prime Minister Gordon Brown himself. For Fitzpatrick to try to undermine this and to try to deny a charity the ability to do that on behalf of suffering individuals in a country deluged by autism is outrageous.

You can almost see the smoke coming out of Arranga’s ears. And for what? This is nothing but a strawman. Nowhere I can see is Mike saying Tommey shouldn’t go for her meeting with Gordon Brown. And nowhere I can see is Mike saying Tommey shouldn’t do the great things described. What he _is_ saying is that Brown should be very careful about the sort of things coming out of Tommey’s mouth about vaccines, treatments and cures. She is, on these issues, a know-nothing and I think it is absolutely correct for Mike to speak up for the autistic people and parents of autistic people who have no interest in the poor science peddled by Tommey’s publication.

Then after the strawman comes the conspiracy theory, this one bizarrely roping in Brian Deer for some totally mystifying reason:

If it threatens the Deer/Fitzpatrick camp when we want to get better services and supports for 1 child in 60 in the UK and their families, then we have touched a nerve. For example, how can trying to get decent housing and family supports threaten Deer and Fitzpatrick’s current repertoire of witch hunting? Why are they so scared that they would resort to petty tactics?

I mean, huh??? Can’t these people read? And whats this 1 in 60 number? The prevalence for autism in the UK is about 1 in 100. Weird.

Also frothing over in indignation is Oliver Jones, Chair of Autism Trust. He is ‘shocked’ _and_ ‘astounded’ (less caffeine feller):

How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in – when you evidently have no idea about what we are actually focused upon

Oliver – it seems Mike has a very clear idea. Once again, at no point did Mike say that Tommey shouldn’t meet with Brown or discuss her campaign. He is merely pointing out that Tommey is someone with some decidedly odd ideas about autism treatment and that Brown should show these ideas – if they happen to be raised – the door. He also quite rightly points out that if Tommey is really serious about getting better services and education she should join NAS and support their already existing campaigns in these areas. I’m sorry Autism Trust but the phrase ‘showboating’ does spring inexorably to mind.

Their closing paragraph is genuinely amusing:

Secondly, in respect of Michael Fitzpatrick’s ill-informed letter, we would recommend that we should not seek to highlight this man in the eyes of the UK government, but, instead, we should recommend that people write to him directly. People like Dr Fitzpatrick – like Brian Deer – should simply not be allowed to undermine genuine initiatives such as Polly’s – we cannot allow this censorship.

Yeah, damn that censorship Mike (and Brian Deer again???) -how could you dare to voice your concerns and opinion in a public way? Why couldn’t you just shut up?? Oh wait…isn’t that….censorship…d’uh.

AoA have suggested 2 letter writing campaigns. The first is to deluge Mike’s inbox with emails from AoA readers. The second is to flood the PM with emails supporting Tommey.

Thats fine. But Tommey and AoA should know that a second email campaign is now under way. I’ll ask my readers here to contact Number 10 by writing an email to Gordon Brown c/o Katie Martin (Press Office in Downing Street) on email kmartin@no10.x.gsi.gov.uk or to Michael Ellam (Director of Communications in Downing Street) on email mellam@no10.x.gsi.gov.uk.

I’ll be writing as the parent of a severely autistic child to express my support of Mike’s points regarding Tommey’s beliefs. I hope you will too. And note that AT is an international organisation – US citizens are valid contributors also.

Age of Autism claim 'hundreds of case reports' of recovered children

16 Dec

A post on the Age of Autism about an interview with the New York Times describes how the interviewee believes that:

….none of our health authorities have any explanation of cause or cure [of autism], we have a whole community of doctors and parents who are actually recovering children. And, without ever treating an autistic child, interviewing a DAN! doctor who treats them, or exploring the several hundred case reports of complete recovery and thousands of stories of improvement…

I was fascinated by this. I have not ever seen one published case report of a child recovered by a DAN! doctor in a respected medial journal. In fact, its a common refrain of mine that these things do not in fact exist at all. And here the author of this post is claiming that there are ‘several hundred case reports of complete recovery’. I thought maybe there’d been an upsurge in PubMed so I went to have a look.

I found one case study that referenced DAN! methods: The recovery of a child with autism spectrum disorder through biomedical interventions. This study (for which no abstract is available) is published in ‘Alternative therapies in health and medicine‘ which claims to be a peer reviewed journal and who’s subject matter includes such medical breakthroughs as Reiki, prayer and reflexology. How this magazine got listed in PubMed I have no idea.

Anyway, suffice it to say that it is totally unsurprising that this study got published in such a publication (Eigenfactor here – compare to New England Journal of Medicine for an idea of how good it is).

So, here’s one very dodgy ‘study’. Where are the other several hundred case reports?

It is also well established that those who use Alt-Med and go on to claim recovery also use mainstream therapies (e.g Jenny McCarthy’s child who was on GFCF, some other stuff….and one-to-one speech therapy). In a 2006 study ‘Internet survey of treatments used by parents of children with autism‘, it was established that:

The mean number of current treatments being used by parents was seven….

I haven’t read the ‘study’ in the Altie journal but the experience with Jenny McCarthy’s child, and plenty of others I have read online indicates that this is true for most parents who claim to be recovering their kids biomedically. As such, you have to give weight to the treatments that are established to have some benefit already. And lets also look at the results of the recent Helt study which reported that a non vaccine related, non-biomed set of kids had somewhere between 3 and 25% recovery. This indicates that sometimes, kids just recover. For reasons we are not really aware of yet.

So I am left puzzled as to why the Age of Autism claim there are several hundreds of case reports. I am puzzled as to how they know it was the biomed intervention which precipitated the alleged recovery and I am puzzled as to how they link _any_ sort of treatment to recovery. All in all, it seems like a set of claims that are not reality based are being made. But maybe I’m wrong – if so, please – anyone from AoA – provide a link to the peer reviewed journal published several hundred of case reports that you claim exist.

Stephen M Edelson gets it wrong, wrong, wrong…

25 Nov

Communication is the members mgazine of the UK’s National Autistic Society. In an issue earlier this year, Mike Fitzpatrick, GP and author had an extract from his latest book published.

The extract touched on chelation and the death of Tariq Nadama.

This prompted a bilious response this month from Stephen M Edelson in this months Communication. The level of ignorance in his response is astounding. I have attached the whole response as a Word document to save me getting accused of taking things out of context. BUt for here, I’ll quote selected parts.

Fitzpatrick has been a longtime, outspoken critic of chelation. (Chelation involves a medication, such as DMPS or DMSA, which removes neurotoxic heavy metals, such as lead and mercury, from the body; it is given under the supervision of a doctor.) If an individual tests with very high levels of one or more heavy metals, chelation is the treatment of choice throughout the medical profession.

If test results indicate very high levels in someone on the autism spectrum, isn’t this person entitled to the same medical care as someone without autism?

This is far too simplistic. Of _course_ if someone on the spectrum has test results that indicate high levels of metals they should have the standard treatment. That is a strawman.

The _point_ is rather more complex that that as Mike mentions in his book and I have blogged about numerous times.

The labs that Mr Edelson and his DAN! colleagues recommend test for levels of metals in people on the spectrum very, very often give false results. Take this extract of the testimony of Dr Jeffrey Brent, a sub-specialty board certified medical toxicologist and the former President of the American Academy of clinical Toxicology.

…I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, *100% of the time they’ve been normal*.

So when ‘these Doctors Data’ type of labs do the tests they indicate the need for chelation. When _experts_ in the field such as Dr Brent do the gold standard tests ‘100% of the time they are normal’.

Dr Edelson needs to realise that _that_ is why chelation is an invalid treatment for autism. The fact that when taken to an expert in Chelation and Toxicology, the results usually indicate that chelation is not warranted.

Edelson continues:

In his article, Fitzpatrick brings up the accidental death of Tariq Nadama after chelation treatment. What he does not tell the reader is that Tariq was given the entirely wrong drug, one with a similar name and label that was nearby on the office shelf. Regrettably, these drug errors do
happen in hospitals and doctors’ offices and Fitzpatrick has exploited this unfortunate incident several
times in the past without explaining the complete story. (I have already corrected Fitzpatrick in a previous issue of Communication, and I am disappointed that the editor knowingly allowed such half-truths to be disseminated to NAS’ membership once more.)

Once more, Mr Edelson is quite wrong. Tariq Nadama was not given a drug by mistake ‘with a similar label that was nearby on the office shelf’.

When Dr Roy Kerry (who joined Mr Edelsons loose affiliation of practitioners after the death of Tariq Nadama) was prosecuted for the death of Tariq, the following was admitted by him:

70. Respondent admitted that EDTA is very rare to use on children.

71. Respondent admitted to using Disodium EDTA to chelate Tariq.

72. Respondent stated to Investigator Reiser that Disodium EDTA is the only formula of EDTA he stocks in his office.

73. Respondent admitted that CaNa2EDTA is available but that he has never used this agent.

I would recommend that Mr Edelson reads the entire complaint against Dr Kerry.

Edelson continues again:

Over the past 20 years, scientists have clearly documented immune system dysfunction and gastrointestinal problems associated with autism. Many of these problems can be treated successfully using established medical treatments.

Of course, this is twaddle. I challenge Mr Edelson to provide peer reviewed journal published science to back up these statements. As recently documented by Professor Stephen Bustin, the gastrointestnal ‘link’ to autism is not valid and never was.

I wonder why these treatments that so successfully treat autistic peoples autism have never had one single (that I can find) case study published?

Update 28 Nov 2008

An update from Mike who read some of this thread:

It is true that a number of environmental factors have been identified as causing autism in a small number of cases – these include viral infections (rubella, CMV) and drugs (thalidomide, sodium valproate). What is striking is that ‘over the past decade not a single new environmental factor has been identified as playing a significant role in the causation of autism’ (Defeating Autism: A Damaging Delusion, p 81). Indeed, it would be more accurate to say ‘over the past two decades’. By contrast, over this period there have been dramatic advances in the genetics of autism. Meanwhile intensive researches into alleged vaccine-autism links have failed to confirm any causative relationship.

‘The conviction of the biomedical activists that there must be some environmental explanation for the rising prevalence of autism has grown in intensity in inverse proportion to the emergence of scientific evidence in favour of any particular environmental cause.’

Savage Autism

19 Oct

So Denis Leary, one time comedian and currently insulting disabled children, has joined forces with that other prime idiot Micheal Savage to call autistic kids dumb:

There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks.

So, whilst I wipe away the tears of mirth (and only so recently after I had to sew my head back on after I laughed my head off at Tropic Thunder) from my eyes I think to myself – what is it about autism that attracts so much ire from comedians? Well, if I listened to silly people like Ginger Taylor, I’d think it was the CDC’s fault:

It is AAP and CDC’s job to investigate illness and educate the public on said illnesses, but every time a health professional gets on TV and utters the ignorant words, “Mysterious disorder, no know cause or cure” they make one more Dennis Leary, one more Michael Savage…

Thats right, by telling the scientific truth, the AAP and CDC – not only evil promoters of the evil vaccines – also ‘make’ Micheal savage and Denis Leary say stupid things.

Newsflash Ginger – you just said a stoopid thing too. Nobody makes people like savage and Leary say these things. They say it because deep down, they really believe it. Just like Tom Cruise and the other idiot Scientologists really believe that autism doesn’t exist (despite them getting involved with DAN!), the likes of Savage and Leary really believe that parents like you and I _are_ lazy. And its nothing to do with vaccines and its nothing to do with causes. Its to do with lazy thinking.

Ginger goes on to ask:

Or are you perhaps hoping to be able to up the ante and replace the phrase “Refrigerator Mother” with the phrase “Münchhausen Mother”?

Newsflash Number two Ginger – some of your Mother Warrior friends are pretty close to that right now. Not that long ago I posted an entry that described parents chelating 13 month old babies. And here’s a snippet from another Mother Warrior:

My son is 6 and I have to hold him down for the IVs – we’ve done 10. Today he got poked 3 times and has purple hands from blowing veins.

Yummy.

Newsflash Number three Ginger. Although you firmly believe otherwise, there is no science to support the beliefs you have about vaccines and no science to support the ‘treatments’ these people are doing to their children. Without any sort of evidence at all what you and your fellow Mother Warriors are doing _is_ child experimentation. Maybe you should give some thought to the possibility that Savage and Leary are being fed by the endless stream of middleclass know-nothings who think that they know everything there is to know about vaccines? Just a thought

Anyway, I put together a little something for us all to get a little payback against the idiots in celebville. Enjoy

Broken Families, Not Broken Children

29 Sep

Introduction – This is a Guest Blogged piece, written by a father in what is a far from unique situation and yet a situation we hardly ever discuss. Its humbling, touching, sad and affecting. Its also a microcosm of how fractured the autism community has become and how some are prepared to accept dangerous treatments where others are simply not. I hope you can give the author some feedback after you read this piece. Kev.

Broken Families, Not Broken Children

By a Proud Father

I’m sitting here, having just put my son to bed, and dreading having to take him over to his mother’s in the morning. This is my long weekend with him – Friday evening until Tuesday morning – and they go by so quickly. I’ll see him in a couple of days for 24 hours before he’s gone again for another 4 or 5 days. It’s a convoluted mess, but the best I can do right now. He’s handling it very well and we have way too much fun when we’re together. I don’t know about the other days, and I try hard not to think about them too much. I hope he’s as happy as he seems to be here.

You always hear about the high divorce rate among parents of autistic children. I guess my assumption was always that one of the parents was never able to deal with the realities of raising an autistic child and bailed out of the marriage with a comment like, “I just can’t handle this. I’m sorry.” (Sound of front door closing.) But now I wonder whether it’s often a different situation entirely – two parents who love their autistic child but are at completely opposite ends as to how to “treat” them. I say that because that is exactly what has happened to my marriage and my family.

I will be the very first to admit that our marriage had never been perfect, that it had more than its share of rocky times. But there were never any “external” factors as such, and our lives were devoted to our son, who will be 5 at the end of this year. I won’t go into all of the details of the first few years of his life; I’m sure everyone has heard of – or lived – them all: missed milestones, speech delays, socialization problems, repetitive behaviors, and so on. But we accepted it – I thought – and started the usual speech, occupational, and physical therapies, and he began attending a preschool PPCD class at the elementary school down the street where he will eventually go to Kindergarten and grade school.

About a year and a half ago, my wife mentioned she had heard of a place in Austin that could help our son. At that time, we had not heard of Wakefield et al, and were only marginally aware of the vaccine-thimerosal-autism “issues”. Our first appointment went fine it seemed, and we got a list of supplements as well as dietary guidelines to follow. I remember leaving there and heading home to Houston on a mild, pleasant winter afternoon, thinking, “Wow, now we can really get him some help and everything will be fine.”

But it went downhill from there. As I started to do more and more reading and more and more research on what they wanted to do to our son, I became increasingly concerned about the lack of proven effectiveness – and more importantly – the safety of the treatments. I tried to show my wife that this was all starting to get more than a little scary, but she blew it off, saying that these people were the only ones that really cared about helping our son.

I had allowed our son to undergo several weeks of B-12 shots, the only effect being that it made him jumpy and restless at night (he has always been a good sleeper and consistently gets 10 hours a night). I had allowed him to get several weeks of DMSA suppositories to absolutely no effect. I had allowed gallon after pound of blood, urine, and stool samples to be taken from him and sent off to the mail-order labs we all know about, the ones who send back pretty, colorful lab reports designed to show parents how much they know and how much they care about their kids. I showed her the lab reports that we did manage to get from the reputable labs that completely contradicted the other ones. She refused to allow him to get his 2nd MMR shot (although his pediatrician – an excellent, common-sense doctor – allowed us to wait a bit on that one, she did insist that when he turns 5, he will get the shot.) The DAN! protocol, the Yasko protocol, homeopathy, naturopathy, functional medicine, and so on, and so on.

I kept telling my wife that this had to stop. In the meantime, I heard things like, “You don’t want him to get any better so he can remain dependent on you the rest of your life”, and “If you don’t want to help your son, get out of my way”, and “Didn’t you hear the (DAN) doctor when he said ‘It’s clear the metals are there’?”, and “Do you want him to stay like this forever?” (that last one – and other similar comments – said in front of our son). No, there is no such thing as an autistic meltdown, they’re all temper tantrums and should be treated as such. Stop every single stem, it’s bad for him. No, he’s a child with autism, not an autistic child (as if it were a disease that needed to be eradicated).
And then, of course, along came Jenny McCarthy to validate everything.

I somehow managed to keep the scary stuff away from him for a while (I’ve found out that at least some of these doctors are hesitant to insist on treatments if one parent is adamantly opposed to it). But then one day a new package came in the mail: DMSA suppositories, B12 shots, Valtrex, and glutathione cream. She had gone behind my back and gotten the DAN doctor to prescribe these things. I knew then the marriage was over. No matter what, I was not going to allow our son to be subjected to this insanity all over again.

So that’s where we are now: in the middle of a divorce; fighting to do what each of us thinks is best for our son; fighting over who has the right to determine his treatments and therapies. So far, I have managed to do what I set out to do: stop our son from being hurt any further. Alternative medicine treatments have been stopped – no chelation, no injections. When he is with me, there is no GFCF diet (he has always tested negative for celiac disease and reputable allergy tests show he’s not allergic to anything). He can have dairy milk, whole wheat, and all of the fruits, vegetables, and nuts that he supposedly was deathly allergic to. And he has never shown any external or internal adverse effects from any of that. I do not give him the dozen or so supplements that were a part of his life for too long – although I’m sure he gets them on other days.

I know that there are those who treat autistic children who are fully aware of the utter ineffectiveness of their treatments as well as the very serious risks associated with them. I honestly believe there is a special place in hell for them.

I also know that there are those who honestly believe that their treatments are effective and that they are doing autistic children a great service. I sometimes pity them – as I pity my wife – that they can’t admit that they are wrong in the face of overwhelming scientific evidence. But then I think about how this lack of objectiveness and concern affects the health and safety of innocent children, and my pity disappears – completely – and is replaced with anger.

They say that what matters most when raising an autistic child – above all else – is love and acceptance. While I know that both of his parents love him dearly, one of them does not have the acceptance. And that is sad – sad for our son, sad for his parents, and sad for the family.

I have lost my wife as well as family members over this; in-laws that were like members of my own family. But it is really all about our son. He is a genuinely happy, smart, and gentle child who is the most incredible gift I can possibly imagine. And I will not allow anyone to tell me – or him – that he is broken, that he needs to be fixed, that he needs to be released from his prison, or that he is soulless.

One of the most beautiful statements I’ve read in the last couple of years comes from a wonderful essay that Kerry Cohen wrote called What’s Wrong With This Picture ?. She ends it with:

But if I am only able to do one thing for him as I usher him through childhood, it will be this: I will protect him from anyone who might make him feel that he is somehow not perfect.