Archive by Author

John Stone/Polly Tommey claim oversight

26 Sep

The first official sounding of the death knell for the ‘hidden horde’ hypothesis of autism (it must be vaccines because there aren’t 1 in 160/150/100 adult autistics) was recently sounded (as reported by Anthony) when an NHS study announced that the rate of autism amongst adults was 1% – exactly the same as for kids.

Fully aware of the implications for their beloved anti-vaccine hypothesis John Stone and Polly Tommey write/star in a recent post on that repository of all things bullshitty – Age of Autism.

NHS Autism Report suggests the increase in autism in recent years was all down to an oversight

Says John Stone, trying to reassure his readership theres still life in the terminal old dog of the hidden horde hypothesis. And why does he say this?

“Are we really able to believe all that we hear on such important subjects, or is there a stronger hand with adifferent agenda behind it?”

Ahhhh, of course! When a piece of science/news story doesn’t support your point of view then it _must_ be the work of….oh, whoever – Illuminati? Out of control government? GAVI? Take your pick.

But surely Stone and Tommey have better reasons than that…? Don’t they?

Well no, not really. They didn’t like the perfectly valid Autism Diagnostic Observation Schedule that was used. Although they don’t refer to it by name, instead they cherry pick questions to try and demean the validity of the test.

The report was based on adults living in households throughout England and the assessments were done in two stages. Stage One asked individuals to rate how well they agreed with 20 statements about their likes, dislikes and abilities – such as whether they preferred going to ‘libraries’ or ‘parties’.

…If the full range of ability had been included in the NHS report, alongside the verbally fluent, high functioning adults living at home, there would surely be far more than 1 in 100. So, either there are more adults than children with an ASD and autism is on the decline(!?) or there is something wrong with the report.

A quick glance at many mainstream autism orgs claim on prevalence would show Stone that yes, there are more autistic adults than children. This report could indeed be interpreted to show a decline in autism.

People will claim that thats counter intuitive but it really isn’t. As autism has become more recognised, better diagnosed and there are more centers worldwide for its early detection, child numbers have not risen but have become more apparent. This is true across the whole ‘spectrum’.

Taking the NAS numbers on prevalence They say that at a rate of 1 in 100 children gives a total of around 133,500 kids with an ASD. This leaves 366,500 adults. A rate of 0.8%.

So the estimate prior to the new report was 0.2% out. But Stone was right, there are now (and always were) more ASD adults than kids. Thats because there are more adults in the general population than kids. In terms of whether the _rate_ of autism has decreased there’s no research to compare this to but an estimate of 0.8% is pretty damn close to 1%. In real terms the NAS were only out by 733 adults. So I would say that this report reflects reality – with no doubt regional variance and other factors, the adult rate is (and always was) around 1%.

But the stoopid continues apace:

One thing is clear, however, the report has no relevance to children withautism like my son Billy and the many thousands like him.

Quoth Polly Toomey who somehow missed the point that this was a study of adults and thus was never going to have much relevance to her children.

We’re then treated to the science of Carol ‘try me shithead‘ Stott who personally received over £100,000 of legal aid money to prop up the dead MMR hypothesis. She claims (after further digs at ADOS) that a ‘further detailed critique’ will be appearing in that robust science journal AutismFile….owned and operated by one Polly Tommey.

So there we have it. This new study, which whilst far from 100% perfect is also far from the dead dog portrayed by the purveyors of science at The Autism File and Age of Autism. They think theres a conspiracy to ‘big it up’ and refuse to see the statistical truth. ASD hasn’t ever been in epidemic, theres been a stable rate for a long time. These dealers in anti-vaccinationism will just have to deal with that.

Why I don’t like “I am autism”

25 Sep

When the Autism Speaks “I am autism” video came out, I really didn’t like it. It was on such a primal level that I couldn’t put words to how much or why I found it offensive.

One problem with leaving my reasoning unsaid is that many people reach the wrong conclusions. I have read here and elsewhere complaints that people like myself who criticize “I am autism” don’t understand that it is about the most challenged (low functioning) autistics.

I would say that anyone who thinks “I am autism” is about the challenges of autistics (“high functioning” or “low functioning”) didn’t pay close attention to the video.

Here it is again. (and here is a transcript)

Of course, some people understood where I was coming from. Fellow parent, Monica, wrote in the comments:

My voice isn’t the one that matters when it comes to autism. It really does take an idiot not to get that. I think a lot of my role as a parent is shutting up and listening. Until I am able to be quiet long enough that I can understand what they are wanting/needing I have no business being anyone’s voice. That’s a lesson that Autism Speaks obviously hasn’t learned.

It has been said that most stories have three main elements: a villain, a victim and a hero. “I am autism” certainly uses this three-pronged plot device. Let’s take a look:

The Villain: Autism

Autism Speaks very clearly has cast “autism” as the villain. Autism has no morality. Autism doesn’t know right or wrong. Autism wants to steal our children and our dreams.

Autism is some sort of science fiction monster or demon who stalks our children.

The victims: Parents

Watch the video and ask: Who is affected by autism? If all we had was the video to go by, the answer would be simple: Parents. Autism takes money away from…parents. Autism ruins the marriages of…parents. When a child has a meltdown in a public place, a park or temple or birthday party, it is the parents who are embarrassed. The death of a parent is important in the fact that the parent dies worrying about who will take care of their child or children.

The heroes: Parents

Yes, the parents are cast in two roles, victims and heroes. OK, not just parents. Grandparents, brothers and sisters are also heroes. Teachers, therapists, pediatricians and scientists get supporting roles as heroes as well. They are a community of warriors.

OK, that’s what I don’t like. If I were to make an appeal for funding (which is what I assume “I am autism” is for Autism Speaks), how would I frame it? What would I change?

First, autistics were given no voices in this video. It is all people speaking for autistics. Leaving autistics out is wrong on so many levels. Many, many levels. I could write the entire blog post on that one topic, and still have people pointing out things I missed.

Second, they still pose the discussion as primarily about children. There is at least one adult shown in the videos, but by far most of the video and voiceover is about children. Autism Speaks claims that there are 1.5 million autistics in the U.S. Perhaps it is time they acknowledged the 1.0 million adults and not just the half million children.

Third, I don’t like the victim device. No, I am not saying that autistics don’t face challenges, or that the challenges some face are very, very great. I am not in denial of that. I just don’t like victimizing the people you are purporting to help. It is paternalistic and it is counterproductive to many of the goals that are very important, like trying to help people live as independent a life as possible.

Which brings us to the fourth point:

Fourth, with apologies to my fellow parents, but the autistics really are the heroes. There are kids working harder in kindergarten than some people work in grad school. There are adults working harder just to get through the day than I do at work. If we are supposed to pity the parent who is embarrassed by their child in the park, how about some compassion for the child (or adult) undergoing the meltdown? We are supposed to feel the pain of the parent who wakes up crying wondering about “who will take care of my child after I die”. How about the autistic who will spend most of his/her life without a parent caregiver?

Who, really, is the hero? When will Autism Speaks get it that it is time to stop patting themselves on their own backs and start acknowledging the accomplishments of their children and the many autistics in the world. Autism Speaks could go a long way towards that by integrating their own organization with the very people they purport to represent: autistics. Get some autistics into Autism Speaks and start listening.

Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression

24 Sep

Autism, regression, mitochondrial disease and vaccines. With a combination like that, this paper is likely going to be very important.

Fever Plus Mitochondrial Disease Could Be Risk Factors for Autistic Regression

Here is the abstract:

Autistic spectrum disorders encompass etiologically heterogeneous persons, with many genetic causes. A subgroup of these individuals has mitochondrial disease. Because a variety of metabolic disorders, including mitochondrial disease show regression with fever, a retrospective chart review was performed and identified 28 patients who met diagnostic criteria for autistic spectrum disorders and mitochondrial disease. Autistic regression occurred in 60.7% (17 of 28), a statistically significant increase over the general autistic spectrum disorder population (P < .0001). Of the 17 individuals with autistic regression, 70.6% (12 of 17) regressed with fever and 29.4% (5 of 17) regressed without identifiable linkage to fever or vaccinations. None showed regression with vaccination unless a febrile response was present. Although the study is small, a subgroup of patients with mitochondrial disease may be at risk of autistic regression with fever. Although recommended vaccinations schedules are appropriate in mitochondrial disease, fever management appears important for decreasing regression risk.

The authors note neurologic regression in general (not just autistic regression) is observed with patients who have metabolic diseases:

Patients with mitochondrial diseases, like many patients with metabolic diseases, are at increased risk of neurologic regression in conjunction with stressors such as fever, infection, and dehydration.

They studied 28 patients who met DSM-IV criteria for autism and diagnostic criteria for mitochondrial disease.

They define regression and whether it is related to fever thusly:

Autistic regression was defined as loss of developmental skills that included speech, receptive skills, eye contact, and social interests in individuals ❤ years of age. A relationship between fever and autistic regression is defined as regression beginning within 2 weeks of a febrile episode without the suggestion of infectious meningitis or encephalitis.

One comment–the definition of regression is somewhat vague to me. What is also critically important in this discussion is whether there were any signs of autism before the regression. Or, as some may put it, is this regression into autism or autistics undergoing regression? Is there a mix of pathways?

They state that 17 of the 28 patients studied underwent an autistic regression. This is higher than the roughly 25% value for autistic regression they assumed for the general autism population, and statistically significant.

In other words, they are saying that autistic regression may occur more often with kids with mitochondrial diseases.

They note that some of the fevers could be linked to vaccination:

The 17 individuals with autistic regression could be divided into 2 groups, those who regressed with fever (70.6%, 12 of 17) and those who regressed without identifiable linkage to fever or vaccinations (29.4%, 5 of 17).

And,

No individual showed regression with vaccination unless a febrile response was present.

They discuss the concerns with vaccination in the conclusion, noting that vaccination is still recommended for children with mitochondrial diseases. My experience in discussing this issue with mitochondrial disease experts is that they find vaccination to be extremely important. If, for some reason, they decide to not vaccinate a child with mitochondrial disease, they insure that all family members are vaccinated to protect the child.

Children with identified mitochondrial diseases are routinely managed carefully by their physicians with aggressive fever control and hydration. In this context, vaccination of children with mitochondrial diseases is recommended. In our experience, the vast majority of patients with mitochondrial diseases receives a full vaccination schedule according to American Academy of Pediatric guidelines without consequences, particularly when physicians are sensitive to fever control and hydration. In our patients with mitochondrial disease and autistic spectrum disorders, the vaccines did not appear related to the neurologic regression.

I will note again that I feel autistic regression as defined is too vague. Were the patients on the spectrum before the regression? Were they typically developing before the regression?

At least two children were noted to have multiple regressions (a sibling pair). That indicates that at least in some cases, regressions occurred in people already autistic. There just isn’t other information on this.

Another area I would like to see discussed further is on siblings:

Affected siblings were identified in 35.7% (10 of 28).

Affected how? Mitochondrial disease. But, are they also autistic? It would seem not since they included one sibling pair.

This is a big question to me. While the spotlight has been shown on the possibility of mitochondrial disorders being linked to autistic regression, the more general question is more important: could fevers induced by vaccination result in any regression (autistic or otherwise) in people with mitochondrial disorders.

Another question in my mind in this study. Are there patients who underwent regression from non-autistic to autistic) after age 3? According to the Johns Hopkins group, this doesn’t happen. According to them, there is an age window where the regressions could result in autism. This is a very important question in how these patients might fit in to the broader spectrum of autism.

Apply for Autism Research Grant

23 Sep

The Autism Science Foundation announce their first RFA:

The Autism Science Foundation invites applications for its Doctoral Training Award from graduate and medical students interested in pursuing careers in basic and clinical scientific research relevant to autism spectrum disorders.

The proposed training must be scientifically linked to autism and may be broadened to include training in a closely related area of scientific research. Autism Science Foundation will consider for training purposes all areas of related basic and clinical research including but not limited to: human behavior across the lifespan (language, learning, communication, social function, epilepsy, sleep, repetitive disorders), neurobiology (anatomy, development, neuro-imaging), pharmacology, neuropathology, human genetics/genomics, immunology, molecular and cellular mechanisms, and studies employing model organisms and systems.

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.

The Autism Speaks bait and switch with I am Autism

23 Sep

Autism Speaks’ recently debuted their new “I am Autism” video.

Here is Suzanne Wright’s appeal for parents to donate video footage for this event:

“We will all help shine a bright spotlight on autism.”

I find the final video to be far from “shining a bright light on autism”.

I am so glad I didn’t trust Autism Speaks with video of my child.

Autism Speaks media campaign…I am autism

23 Sep

Shades of the disasterous NYU Ransom notes campaign:

They make autism into a being with a voice who says:

“…and with every voice I take away, I acquire yet another language”

“…and if you are happily married, I will make sure that your marriage fails”

“…your money will fall into my hands and I will bankrupt you for my own self gain”

“…I will make it virtually impossible for your family to attend a temple, birthday party, a public park without a struggle, without embarrassment, without pain”

Not convinced it is like the ransom notes campaign?

“…I will plot to rob you of your children and your dreams.”

The rest of video is scripted from the perspective of parents, family, friends….pretty much everyone except for autistics, with phrases like:

“When you came for my child you forgot. You came for me.”

I am totally speechless aside from one word for Autism Speaks: why?

edited to add: here is the Autism Speaks announcement.

Autism and adults

22 Sep

NHS National statistics have released a report entitled Autism Spectrum Disorders in adults living in households throughout England – report from the Adult Psychiatric Morbidity Survey 2007 . The key facts in this document that they list are:

  • Using the recommended threshold of a score of 10 or more on the Autism Diagnostic Observation Schedule, 1.0 per cent of the adult population had ASD. Published childhood population studies show the prevalence rate among children is also approximately 1.0 per cent.
  • The ASD prevalence rate was higher in men (1.8 per cent) than women (0.2 per cent). This fits with the gender profile found in childhood population studies.
  • There is no indication of any increased use of treatment or services for mental or emotional problems among adults with ASD. This is borne out by the recent National Audit Office publication “Supporting People with Autism Through Adulthood”.
  • A greater proportion of single people were assessed with ASD than people of other marital statuses combined. This was particularly evident among men.
  • Prevalence of ASD was associated with educational qualification, particularly among men. The rate for men was lowest among those with a degree level qualification and highest among those with no qualifications.

Understandably, the BBC have focused on an aspect not covered by these key points. The fact that the existence of a similar proportion of autistic adults to the proportion of children who are autistic undermines the idea that MMR vaccine has led to an increase in autism.

Latest autism figures should dispel any fears about the MMR jab being linked to the condition, say experts.

The NHS Information Centre found one in every hundred adults living in England has autism, which is identical to the rate in children.

If the vaccine was to blame, autism rates among children should be higher because the MMR has only been available since the early 1990s, the centre says.

Rather strangely the BBC provides a link on that news story to the JABS website, which continues to scaremonger about MMR and other vaccines. That editorial decision shows just how difficult it is going to be to ever disentangle vaccine conspiracy theories from autism.

NAS agrees, MMR does not cause autism

21 Sep

Mike Stanton at Action for Autism blogged “NAS agrees, MMR does not cause autism“.

As Mike notes, the NAS (National Autistic Society) statement “Position statement: autism and the MMR vaccine” could be stronger.

The National Autistic Society (NAS) is keenly aware of the understandable concerns of parents surrounding suggested links between autism and the MMR vaccine. We recognise that the weight of epidemiological evidence indicates that there is no statistically significant link between the MMR vaccine and autism.

I don’t want to copy sections for quotes here as Mike gives an excellent discussion of this at his blog. Instead I will refer you to his post.

Childhood Serum Anti-Fetal Brain Antibodies Do Not Predict Autism

18 Sep

One of the big new concepts in autism research in the last two years is the idea that maternal antibodies might be involved in developing autism.

Two groups, one from Johns Hopkins, the other from California showed that in some mothers with autistic children, their blood sera had antibodies against fetal brain tissue.

This raised the question of whether maternal antibodies, transferred during pregnancy, could influence the risk of autism.

One big question raised was the possibility that this could lead to regressive autism. Could something prenatal be linked to regressions in children who were age 1 or 2?

One big question raised (and unanswered) by these studies was the question of antibodies in the autistic children themselves. Do they have antibodies against fetal brain tissue? Could this be a biomarker? And, if so, could this be involved in developing autism in some cases?

The Hopkins team has just published a paper looking into this question.

Autoimmune hypotheses for autism include in utero transplacental exposure to maternal antibodies and acquired postnatal insults. Previous work demonstrated that some mothers of children with autistic disorder have specific antibodies against human fetal brain that differentiate them from mothers with typical children. In the present study, Western immunoblotting was used to determine whether children with autistic spectrum disorders (n = 29) have serum reactivity against human fetal brain that differs from that of controls (n = 14). There was no significant difference in reactivity, corrected for serum immunoglobulin G content and brain actin content and with special attention to reactive bands at 36, 39, 61, and 73 kDa, between autistic children and normal control subjects. Thus, in contrast to mothers, antibody reactivity against human fetal brain as measured in children ages 3-12 years does not appear to be a useful biomarker for autism.

The paper is fairly brief as they don’t find any evidence that the children’s blood sera reacted with fetal brain tissues. Here is a quote from the discussion section:

The present data indicate that the measurement of serum antibody reactivity against human fetal brain in children with autistic spectrum disorders does not predict an autistic diagnosis, either for idiopathic autistic disorder or for those individuals with identified etiologies. These data differ from previous findings in mothers of autistic children, which indicated that anti-human fetal brain antibodies reactive against proteins at 36, 39, 61, or 73 kDa appear to be a biological marker for the disorder in some individuals

Before anyone jumps on me for denying the possibility of any immunological effects in risk of autism, here is another quote from the paper:

The present study does not rule out the possibility that other anti-brain antibodies in the children may be important for postnatal effects. For example, children with autism have been shown to possess antibodies against various central nervous system self-components such as glial fibrillary acidic protein, myelin basic protein, neurofilament proteins, cerebellar neurons, and brain endothelial cell proteins [6-9,23,24]. We hypothesize that, rather than a direct association, there is a complex relationship between maternal anti-fetal brain antibodies and various intrauterine genetic, metabolic, and environmental factors.

Papers that don’t show a connection, show a “null” or lack of an effect, are somewhat unsatisfying. They are certainly not unimportant. I look forward to more research from Dr. Zimmerman’s group at Johns Hopkins,

← Older Entries
Newer Entries →