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Blogger flex muscle–now how about for productive purposes?

2 Dec

Bloggers, largely from outside the autism communities, managed to halt plans to show a scary vaccine themed advertisement which SafeMinds was trying to place in movie theaters for the week of the US Thanksgiving holiday.

This is all well and good, but there has to be more that can be accomplished. More as in something that advances a good cause rather than obstructs a bad one. For the most part I don’t blog to advocate.

There have been some notable successes by bloggers adding to advocacy efforts, in my opinion. For example, stopping the NYU “Ransom Notes” campaign and getting Autism Speaks to back off of the “I am Autism” video. I can only stand back in awe at the efforts of Kathleen Seidel at Neurodiversity.com in depth of reporting on important subjects.

While I don’t plan on moving to making my position here into primarily calling for action, I do hope that with the waning of the vaccine/mercury movement, more effort can be made on directly improving the future my child will live in.

Unfortunately, while it is waning, the vaccine debate will not go away. The way it is waged is damaging, to society as a whole and to the autism communities in particular.

It may be my own personal bias, but I do believe that scientific research has a great benefit in that quest. I believe that the United States, as the leader in autism research funding, should be leading the way. I will continue to follow and encourage others to participate in the IACC process through stakeholder comments.

I also strongly believe in human rights. I believe that we as a people have a long way to go still to insure the rights of the disabled. It is unfortunate that there are so few autism organizations which put the dignity and rights of autistics as a prime focus. It is absolutely shameful that many so-called autism organizations willingly and purposefully act in ways which harm the dignity and rights of autistics.

If we could only harness half of the energy that has been applied to the vaccine-causation discussion, we could make huge gains. 2011 has at least one real goal to work for. If you read the text of the Combating Autism Act (CAA), you will find this phrase a number of times: “Sunset.–This section shall not apply after September 30, 2011.” Yes, the CAA is up for renewal in 2011. The CAA reinstituted the Interagency Autism Coordinating Committee (IACC). This group drafts the Strategic Plan for autism research funding in the United States. The Plan was instrumental in funneling a significant amount of the federal economic stimulus money into autism research–had there been no plan in place, that funding may have been less or zero. Moving forward, it is time to push for a greater amount of research funding to be applied to areas that can have a direct impact on the lives of autistics. Much of the funding is focused on causation and treatments aimed at young children. Much more focus needs to be applied to older children, adolescents and adults. Much more.

Advancing paternal age and risk of autism

2 Dec

This isn’t the first study to look at paternal age as a possible risk factor for autism but it is, I believe, the first meta-analysis of the subject. The conclusions of the study were:

Based on data from a birth cohort, a family-based study and a meta-analysis, we provide the strongest and most consistent evidence available that advancing paternal age at the time of birth of offspring increases the risk of autism. De novo germline mutations, epigenetic alterations and life course toxic exposure may partly explain the observed association. The evidence is substantial enough to justify a search for the underlying mechanisms in both human and animal models

An interesting conclusion for a few reasons. First and foremost the idea of paternal age being a definite risk factor for autism. Secondly the authors don’t shy away from the idea that ‘life course toxic exposure’ may explain the association. Its not exactly a new observation amongst science (despite what some observers think) but its good to see it placed so clearly amongst the other clear risk factors.

There will be those, I predict, who will have a go at this study for somehow ‘blaming’ fathers/parents. It has happened in the past and will no doubt have the same effect on those who’ll attack this study for their own reasons.

Another example of misdiagnosed autistic adults

2 Dec

I am very bothered by the strong possibility that a there exists a large group of autistic adults who are either undiagnosed or misdiagnosed. Demonstrations of this come up over and over in the research literature. Such is the case with Missed diagnosis of autism in an Australian Indigenous psychiatric population, which came out on Pubmed today.

This recent example is from a very specific group: Indigenous Australians hospitalized with schizophrenia diagnoses. This particular group was 215 patients. Of this group, 14 were selected (I haven’t read the paper so I don’t know how this subgroup was selected). Out of that particular subgroup, 13 were “considered” to have a diagnosis of autism.

Missed diagnosis of autism in an Australian Indigenous psychiatric population.

Roy M, Balaratnasingam S.

South Birmingham Primary Care Trust, Birmingham, UK.
Abstract

Objective: The aim of this paper is to review the diagnosis among adult Indigenous patients from the Kimberley region of Western Australia who had an existing diagnosis of schizophrenia. A visit from a psychiatrist specializing in intellectual disability provided the opportunity for conducting psychiatric assessments from a developmental perspective. Method: Selected patients with schizophrenia were assessed from an intellectual disability perspective from an active case load of 215 patients. Result: Thirteen out of 14 selected patients were considered to have a diagnosis of autism when a developmental history was undertaken. Case studies are presented to illustrate the overlap in symptoms and potential for the diagnosis of autism to be missed. Conclusions: Autism spectrum disorders may be missed in Indigenous population groups. This has implications for treatment and service provision. Clinicians need to be mindful of the diagnostic possibility that an autism spectrum disorder might be masquerading as schizophrenia in the context of intellectual disability and atypical presentation.

Misdiagnosis of autistics happens. It happens in the U.S., the U.K. and elsewhere. Again, this really bothers me. It bothers me that there seems to be little focus on this issue by autism advocacy organizations, even by the research funding agencies.

The arrogance of the Autism Treatment Trust

26 Nov

Earlier this week, Anthony wrote about the Autism Treatment Trust and their arrogance in assuming that association with a Nobel prize winner meant their untested therapies were suddenly OK to use.

Today I discovered that their arrogance extended to ignoring the law in the services they offer.

According to their website:

…if you are in need of respite, please contact us and send us a short outline of what your needs are.

The provision of Respite care in Scotland is taken very seriously by the government. So seriously that it set up something called the Care Commission. The Care Commission is there to:

The Regulation of Care (Scotland) Act 2001 (the Act) established a system of care regulation in Scotland. The Act‘s purpose is to provide greater protection for people in need of care services. We are required by the Act to regulate certain care services.

with one of those service being _’Short breaks and respite care services’_ .

One of the great services on the Care Commission website is the ability to check whether a service is registered with them or not. I invite you to do it now – why not check to see if the Autism Treatment Trust is registered?

In fact, I’ll save you some time. They’re not.

Before I blogged this I wanted to be absolutely sure of two things:

1) That the Autism Treatment Trust were definitely not registered with the Care Commission
2) That the Autism Treatment Trust were definitely offering respite.

I tackled the second point first. As members of the Autism Treatment Trust know who I am I decided to assume a false identity and email them. I asked Autism Treatment Trust if they could offer me respite care. The response was:

Thank you for your interest in the Autism Treatment Trust. We have respite care by some of our professional volunteers. This is free of charge, however you would have to cover the travel costs of the volunteer. Some of the respite is offered at the clinic after school or on a Saturday.

So that took care of that – Autism Treatment Trust were definitely offering respite.

To tackle the first point I contacted the Care Commission and asked them if the Autism Treatment Trust were registered with them, as they must be by law. They were not.

Autism Treatment Trust are flouting the law in Scotland. As a autism parent I went on to report them to the Care Commission. The Duty Officer I spoke to was very interested and confirmed that Autism Treatment Trust were definitely breaking the law and that steps would be taken. These steps would include an investigation of Autism Treatment Trust and the forced cessation of offering respite care.

UPDATE

I recieved this email from the Care Commission earlier:

Following your enquiry regarding Autism Treatment Trust I have spoke with the organisation’s President and a doctor working in the clinic. They have confirmed that the respte on offer is where a volunteer (Disclosure Scotland checked) provides activities in the young person’s home while the parent is in the home. The volunteer does not carry out any personal care or administration of medication. Given these circumstances the organisation would not be required to register as a care service.

I have advised them that if they develop their respite to enable the parent to leave the home then they would need to apply to the Care Commission for registration

My response

Dear ******,

That is not what the service was described to me as. The email I received clearly states:

_”Some of the respite is offered at the clinic after school or on a Saturday.”_

Are parents present during this activity?

Update No.2

The relavent page on the ATT website has now changed from its content this morning. This morning the content was as this screenshot (click for bigger):

The content now reads (click for bigger):

Hope and False Hope

25 Nov

Hope. It’s a wonderful thing, and something that parents of children with autism deserve to have in their lives. Fortunately, science shows that there is very good reason for hope. It shows that children with autism continue to learn and develop throughout their lives. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2765385/
http://www.ncbi.nlm.nih.gov/pubmed/15666341

But false hope is another matter. As we saw in my guest blog Truth and Consequences – The Anti-Vaccination Movement Exacts a Price from last year, “biomedical support groups” for autism, so prevalent and so active on the internet, provide a sense of hope and community for parents of children with ASD. But, that hope is not real. The case of “Mary” and her son “Saul” illustrates this – Mary joined a multitude of groups, and tried dozens of “treatments” only to be left poorer. And her child, at age 8, had not “recovered”, but still exhibited many of the challenging behaviors which he had at age 2.

Mary is a bit unusual because she has persisted with “biomedical autism treatments” for 6 years. The typical cycle of membership on such “biomedical support groups” is much shorter. A new parent joins, and attempts to follow the protocol or the advice of the other parents, but if this approach does not help their child, the parent simply abandons the group, usually without comment. However, there are always newly diagnosed children, so one sees a continuous influx of new parent members, asking the “newby” questions. Typically, there is a core of self-proclaimed “go-to” people in the group who have devoted themselves to advising these parents.

The purpose of this blog post is to introduce you to one such “go-to” person, a woman called Dana, a resident of California, and the owner of a website http://www.danasview.net.

Here’s how Dana describes herself:

Hello, my name is Dana and I am 41 years old. I am an attorney, I am married, and I have four children. I homeschool all four of my children, and I do legal work part time from home.
When my second child was diagnosed with autism at age 3, I began searching the internet to learn more about him and who he is, and I was surprised to discover that I also qualified as AS, which I will use here to refer to Autistic Syndrome although I am aware it is used for other uses as well. My third child would probably qualify as PDD, but I have not pursued an official diagnosis for him. My first and fourth child are NT.

Notice that Dana makes it clear that she has no medical background, and she is always careful never to present herself as a medical professional. Nevertheless, she has a lot of credibility on the “autism biomedical support groups”. The reason for this credibility is that she is supposed to have “recovered” her second child, or rather both her second and third children. Here is how she describes her second child in 2001 when he was 5 or 6:

My son’s pedneuro told me that he was very low functioning, never developed at all, classic genetic Kanner’s autism, that my best hope for him would be assisted living in a group home some day. Now my son no longer qualifies as autistic, he will be productive and independent some day, and all of it is because of information I read in books and on the internet. Keep going, you are doing the right thing, as you now know!

Wow! a child who no longer qualifies as autistic! That was pretty impressive in 2001, and it made Dana into an authority on biomedical treatments. However, the story has changed quite a bit over the years:
2003, age 7-1/2

My son was not as old as yours when I started biomedical, altho he was older than most kids I read about. He was age 4 when I started, now is age 7-1/2. When I started biomedical, he basically did not tolerate anything.

He is nearly recovered, his last issue is language delay, all his other issues are gone. Chelation was the intervention that provided the final measure of recovery. I did a few other things along the way, but with chelation he can eat all foods now with no problems, he never has a yeast issue any more, stims only very occasionally and voluntarily stops almost immediately. He is now working on catching up with his language delay.

2006, age 10

My son has a Kanner dx, autistic from birth. In reality, he was injured from my dental amalgams plus HepB vax at birth. I chelated him with ALA, and he is almost biomedically recovered now [chelation being one part of that recovery]. Still developmentally delayed, but catching up.

2008, age 12

Well, when he was 3, the pedneuro told me he would never talk or even acknowledge my existence. Today he is 12 and just completed a first grade program. He talks, he reads, he does simple math, he loves giving me hugs, he calls us “mommy” and “daddy” and says “I love you” and lots of other things. He plays well with his siblings, defends them when we gang up on them to tickle them, is concerned when they get hurt, and he is the only child I have who will do his chores without prompting or complaining.

Because he is so far behind and is already 12, I don’t know if he will be age appropriate. But so far I am pleased with his progress. He has gone from “classic Kanner’s autism, severe, low functioning”, to not qualifying as autistic, but definitely developmentally delayed.

2010, age 14

My son has a dx of “classic Kanner’s autism, severe, low functioning”. The pedneuro who dx him, told me he would never talk or even acknowledge my existence. He said his first word at age 6, after I added digestive enzymes.

The things he needed the most for speech, were enzymes, ALA chelation, anti-virals, B vitamins especially B1 and B12, and anti-fungals. There were several other supps that were also helpful.

Today he is 14 and not yet age-appropriate, but sometimes I do need to tell him to be quiet because he is talking too much.

To me it’s clear that her second son is not actually “recovered” from ASD.

Dana is an amazingly prolific poster. When using the handle “danaatty”, between 2001-2003, she made a total of 9882 posts to just four yahoo groups, abmd, Autism-Mercury, EnzymesandAutism and GFCFKids. In 2003, she adopted the handle “danasview”, and since has made a mind-blowing 48,187 posts to just three groups, with the largest number, 23,705 posts to GFCFKids. That’s an average of 17 posts per day, every day, for 9 years!

Dana blames vaccines for her childrens’ ASD, even though she recognizes that she herself is also on the spectrum. And like most parents who blame autism on vaccines, she has an obsession with eliminating both viruses (presumably the residual measles virus from vaccination) and mercury (from thimerosal containing vaccines). There is absolutely no clinical evidence for any of her recommended protocols. Everything is based on her reputation as a parent who has “recovered” her children.

When viewed in isolation, a single piece of her advice may seem reasonable. However, a small sampling of her posts taken together shows a different story. Here are some symptoms that Dana has blamed on viruses or on viruses leaving the body:

plantar warts
molloscum contagium
yeast, which causes constipation
goopy green eye discharge
major red rash
dry patches of skin
bad case of the “chewies”
visual stims
pushing finger joints and cracking knuckles
OCD
low white blood cell count
loud talking
mouth sores
language difficulty
high fever
sore throat
runny nose
aching bones
fine bumps on chest

In Dana’s view, some symptoms of mercury poisoning are:

dilated pupils
headaches
neck pain
sinusitis
asthma
ear infections
tingling down arms/legs
urinary incontinence
jitters
restlessness
can’t sleep very well
heart palpitations or weird feelings around heart
fungus on feet
pain in jaw
ears popping
pressure in ears
pain in intestines/bowels when exercising
food intolerances
lazy eye

Conventional “autism biomedical” wisdom is that “yeast infections” are common in autism. And that “yeast infections” can result from either anti-viral “protocols” or chelation. According to Dana, some of the symptoms of “yeast” are:

symptoms of Tourette
OCD
anxiety
dark circles under eyes
squinting eyes
needing to chew things
eating plastic and rubber
persistent nail biting
redness/bumps around the mouth
sinus infection
hitting oneself
hitting one’s ears
head banging
making pig noises and snorting a lot
standing on the head
hands always in mouth
severe dandruff
biting a parent
yellow bowel movements
yellow finger nails
pee accidents
tics
crying uncontrollably for 20 minutes or more
cystic acne
constant high pitched vocal stims
non-stop talking
low grade fever
loose sounding cough
ringing in the ears
dizziness
constipation
humming
licking things
hyper and giggling
laughing hysterically
flying into a rage
sleep problems
problems falling asleep
sleep walking
teeth grinding
stinking armpits in a five year old
spinning around in circles
balance issues
chapped lips
extra bad handwriting
visual stims
sexual behavior
red ring around the anus
“spaciness”
anger and aggression,
headache
head banging
sound sensitivity [holding the hands over the ears]
climbing on furniture and jumping off
vestibular sensory issues
and
multiple personalities

It strains credulity that such a diversity of symptoms could possibly be attributed with such precision to only three causes. In fact, there are very few things Dana will NOT attribute to these three causes. For example:

Q: What can cause low white blood cell + low red blood cell count? A hematologist has performed blood tests and ruled out antibodies (lupus, rheumatoid arthritis, etc) and now wants to proceed with a bone marrow biopsy. He appears to think he has ruled out everything else and is now looking for Leukemia or Lymphoma.
Could mercury/metal exposure cause these symptoms? Anything else?

A: It is very possibly a mercury toxicity issue. May also be related to a latent virus issue.
Dana

Dana on viruses:

He had a wart that did not go away with high dose vitamin C [which eliminated a lot of cold/flu viruses in his brain], so I tried lysine, which caused more gains.

I watched a cold virus migrate into my son’s brain once. And after starting
anti-virals, I watched the viruses come out one by one.

The above four supplements (Vitamin A, vitamin C, vitamin D, and lysine) eliminated my son’s viruses, they no longer lie dormant.

Dana on food intolerance:

At my house, controlling yeast and bacteria was required to stop raging. Also, most of the SCD-legal foods my son did not tolerate. He tolerated nothing orange or green, and he did not tolerate fats until mito cocktail. That would have caused major problems for him.

Dana on short stature:

One of my kids had this problem. He needed carnitine and thyroid support.

Dana shows her knowledge of chemistry:

Arginine and lysine are “opposites”, sort of like zinc and copper. If
you suspect a herpes virus issue, definitely do NOT give arginine, it will increase the virus.

Dana on yeast:

The yeast is in his head/brain, not in his GI tract. This happened with my son for a few years. Just because you don’t see signs of yeast in the bm/GI tract, does not mean yeast is not present in other areas of the body.

With her prolific posts and her continuous flow of “biomedical autism treatment” advice for parents, Dana has established herself as a guru. She is one of the key people personally responsible for encouraging parents to subject their children to unproven and potentially dangerous experimentation. According to the Office of Dietary Supplements, consumers in the USA spent $20.3 billion on dietary supplements in 2004. Someone is getting rich on her advice.

Addendum:
In researching this story, I encountered something astonishing. Remember “Mary” and her son “Saul”? Saul is very clearly NOT recovered despite all the experimentation performed on him. The ultimate irony was to see “Saul” featured on Dana’s website, touted as an example of a chelation recovery!

But…it’s toxic!

24 Nov

Warning, non autism subject. Rather, the subject is misinformation by pseudo-autism bloggers.

“It’s toxic”. We hear that a lot about vaccine ingredients, especially thimerosal. But, dose makes the poison. As if I need to say that, yet again. But, once again there is a campaign to scare people about vaccines, using mercury as the hammer. Frankly, I’d be glad to see thimerosal go away just to see what hammer pops up next. (My money is on a resurgence of “too many, too soon”)

In addition to the SafeMinds PSA that they are trying to put into movie theaters, a smaller effort is ongoing (as it always is) at the Age of Autism blog. They recently posted the MSDS for thimerosal. They also gave a screenshot. And, they are tweeting the message.

(Note, I had to add that as I feel a kinship with “female bloggers” as of late)

What can we tell from this? Well, thimerosal has a health safety rating of 2 (that’s the number in the . That’s a “moderate” hazard. If you check closer, you will see that there is a listing for toxicity. They give LD50 numbers. That’s the amount of the substance which given in a short period of time will kill about 1/2 of the test animals. For Thimerosal, the LD50 is 91 mg/kg [Mouse]. Give 91mg thimerosal to a group of 1Kg mice, and half will die.

But, hey, as long as we are looking at MSDS sheets, let’s check the sheet for, DMSA. DMSA, or meso-2,3-dimercaptosuccinic acid, is a chelating agent commonly used amongst those who “treat” autistic children as if they are heavy metal poisoned. The MSDS for DMSA shows, just like thimerosal, a 2 rating for health hazard. A moderate hazard. Again, for emphasis, the same rating as thimerosal. The LD50 is higher, acute: 5011 mg/kg [Mouse]. In other words, DMSA will kill mice (it is toxic) but it takes a larger amount than thimerosal.

But, how much DMSA is a child under this treatment exposed to? From one website, I found:

In one popular chelation protocol for children with autism, the dosage of DMSA is calculated based on the child’s weight, at 1/8 to 1/2 mg per pound. It is administered in divided doses, every four hours. This dose is given every day for three days, followed by a rest period of four days. Many children have remained on this regimen for as long as two to three years, with continued improvement over the course of therapy.

VRP now offers DMSA in a 25 mg dosage intended for children. However, it is always a good idea to work with a chelation doctor when treating children, and that is what we recommend.

OK, for simplicity sake, imagine the 1Kg mouse again. If you give that mouse a flu shot with 25 micrograms of thimerosal, you have given him 0.025mg/92mg or 0.03% of the LD50.

What about DMSA? Give that 1Kg mouse 25mg of DMSA and you have exposed it to 25mg/5011mg, or 0.5% of the LD50.

Both DMSA and thimerosal are well under the LD50 limit, but, by this measure, the 25mg of DMSA is over 15 times more toxic than the 25micrograms of thimerosal.

The thing about vaccines is that kids don’t get them every day. You can’t say the same thing about chelators. Kids have been on chelation “treatments” for weeks, months, even years.

If one wants to argue that “dose does not make the poison”, why are those same people supporting exposing disabled children to a chronic exposure of a toxic substance (DMSA)?

Perhaps I could tweet, “Female blogger ignores the fact that DMSA is poison. Perhaps send her the data sheet?”

And now for something completely different: biblical autism

23 Nov

A strange abstract showed up in my pubmed search the other day: the paper Newer insights to the neurological diseases among biblical characters of old testament. A friend sent me the paper recently, but it turns out the paper is free on pubmed.

From the abstract you can see that one of the claims is that a biblical character was autistic. The character? Samson. I found the idea amusing (my wife laughed out loud at it). I was going to pass on blogging this until I read the paper. You’ll see why below.

Here is the abstract:

Many people over the years have studied the Bible from a medical point of view offering diagnoses for the symptoms and signs that appear to have afflicted numerous individuals in the Bible. We review the biblical characters in the Old Testament and offer newer insights to their neurological diseases. We first look at the battle between Goliath and David. Interestingly, Goliath probably suffered from acromegaly. We propose autism as a diagnosis for Samson which would precede the first known case of autism by centuries. Isaac was a diabetic, and he probably had autonomic neuropathy. Few verses from the books of I Samuel, Psalms, and Ezekiel reveal symptoms suggestive of stroke. Jacob suffered from sciatica, and the child of the Shunnamite woman in II Kings had a subarachnoid hemorrhage. These instances among others found in the Old Testament of the Bible offer newer insights on the history of current neurological diseases.

How do they go about claiming that Samson was autistic? Here’s a taste:

One of the earliest incidents recorded from Samson’s adult life is the journey to Timnath with his parents where he tears a lion
with his bare hands. On his return, he finds a swarm of bees and honey in the carcass of the lion, which he eats, and offers his
parents (Judges 14:8–9). Abnormal eating is one of the atypical behaviors noted among children with autism.

“Abnormal eating”. OK. I accept that eating honey from the carcass of a lion might not be the most common behavior in the world. Then again, I sort of assumed that…it was a story. I didn’t really take it as serious.

There is more. Samson, as you may know, was famed for his great strength (and his idea that his strength was dependent on his hair). This was possibly (according to the authors) due to a lack of the ability to sense pain. Also, they conclude with this gem:

A study of hospitalized individuals carried out in Sweden had reached the conclusion that individuals with autism or autism spectrum disorders are prone to acts of violence.

By that reasoning, a lot of old testament characters had a sign of autism (ever read the old testament? Lots and lots of violence).

That aside, this is a terrible stereotype to put forth. One which is not well supported by the reference they cite. Let’s take a look at the study they reference about autistics being “prone to violence”. Risk Factors for Violent Offending in Autism Spectrum Disorder: A National Study of Hospitalized Individuals

A brief narrative description of the journal article, document, or resource. Little is known about risk factors for violence among individuals with autism spectrum disorder (ASD). This study uses data from Swedish longitudinal registers for all 422 individuals hospitalized with autistic disorder or Asperger syndrome during 1988-2000 and compares those committing violent or sexual offenses with those who did not. Thirty-one individuals with ASD (7%) were convicted of violent nonsexual crimes and two of sexual offenses. Violent individuals with ASD are more often male and diagnosed with Asperger syndrome rather than autistic disorder. Furthermore, comorbid psychotic and substance use disorders are associated with violent offending. We conclude that violent offending in ASD is related to similar co-occurring psychopathology as previously found among violent individuals without ASD. Although this study does not answer whether ASDs are associated with increased risk of violent offending compared with the general population, careful risk assessment and management may be indicated for some individuals with Asperger syndrome. (Contains 2 tables.)

The study “does not answer whether ASD’s are associated with increased risk of violent offending” and “We conclude that violent offending in ASD is related to similar co-occurring psychopathology as previously found among violent individuals without ASD”. But this is used as evidence that “…individuals with autism or autism spectrum disorders are prone to acts of violence.”

Wow. Just, wow.

I see that I have been beaten to the punch on blogging this. Neuroskeptic has a post Autism Gives You Biblical Superpowers

What would you expect if you gave $1,500 to an “autism” charity

22 Nov

If you do a Google search for SafeMinds the link you get says “SafeMinds Autism Mercury Thimerosal”. SafeMinds considers itself to be a part of the “Autism Collaboration” (which, as far as I can tell, is the group that is supporting Andrew Wakefield now that he has lost his job with Thoughful House). A member of SafeMinds holds a chair on the Interagency Autism Coordinating Committee.

So I think it safe to say that they pitch themselves as an autism charity. If you were to donate, say, $1,560, would you expect some or all of that money to go towards something that might help the autism community?

Well, if you had paid for the the Pass the Popcorn but HOLD THE MERCURY! Safeminds Theatre PSA Campaign that SafeMinds recently put on, you would be mistaken. The campaign was an effort to raise money to put this public service announcement (PSA) into theaters this week.

You can find details, where else, on the Age of Autism blog. If you go there, you will see that three people donated at the $1,560 level, each such donation would put the PSA on 25 screens all week in New York or Los Angeles. Many others donated at lower levels.

The Age of Autism had another fund-raiser recently. That story was met with skepticism even though it was, I have been told, supported by Andrew Wakefield himself. The fundraiser was for legal aide for an autism family. So far, about $1800: enough to put the PSA on a little more than 25 screens. None of the prominent “editors” of the Age of Autism blog came forward in support.

SafeMinds. Age of Autism. At least you know what their priorities are. Autism isn’t number 1, vaccines are.

One might respond that to SafeMinds (and Age of Autism), vaccines and autism are not separate issues. They still subscribe to the idea that thimerosal in vaccines caused an autism epidemic. That by preventing thimerosal containing vaccines being given to infants and pregnant women is, in their view, preventing autism.

To that I answer: why spend money putting the PSA on screens in Los Angeles? In 2006, California law prohibited administering thimerosal containing vaccines to children under 3 and to women who are pregnant. Yeah, they are warning pregnant women and parents of young children against—something they aren’t going to get anyway. But that doesn’t stop SafeMinds from putting an image of a syringe next to big puddles of mercury in front of families.

addendum: it appears that at least one theater chain said no to the PSA.

Montagnier and the Autism Treatment Trust

22 Nov

This summer the Nobel Prizewinner, Luc Montagnier, seemed to lend credibility to homeopathy.

French virologist Luc Montagnier stunned his colleagues at a prestigious international conference when he presented a new method for detecting viral infections that bore close parallels to the basic tenets of homeopathy.

Although fellow Nobel prize winners — who view homeopathy as quackery — were left openly shaking their heads, Montagnier’s comments were rapidly embraced by homeopaths eager for greater credibility.

Montagnier told the conference last week that solutions containing the DNA of pathogenic bacteria and viruses, including HIV, “could emit low frequency radio waves” that induced surrounding water molecules to become arranged into “nanostructures”. These water molecules, he said, could also emit radio waves

He suggested water could retain such properties even after the original solutions were massively diluted, to the point where the original DNA had effectively vanished. In this way, he suggested, water could retain the “memory” of substances with which it had been in contact — and doctors could use the emissions to detect disease.

Luc Montagnier won his Nobel Prize just two years ago, for the discovery of HIV in 1983.

The excellent Gimpy’s blog reports that Montagnier has turned his eye towards autism. He is seeking to use his new found ability to detect infections using “low frequency radiowaves” at the Autism Treatment Trust with a Dr. Skorupka and Dr Amet. Skorupka is described as a DAN! practitioner from Paris; Dr Amet is a neuroscientist, but not a registered medical practitioner. As readers of this blog will be aware DAN! (Defeat Autism Now!) practitioners use non-standard biomedical treatments that have little in the way of supporting evidence. Often “studies” in this area (in the US) will be funded by parents.

The Montagnier study as published at the Autism Treatment Trust, hopes to use Montagnier’s alleged ability to detect viruses and bacteria from the “low frequency radio waves” they emit. Montagnier is of the view that “some abnormalities in autism as well as in a whole range of neurological conditions, such as chronic fatigue and multiple sclerosis may be caused by potential infective agents.”, and has recently received a grant from the Autism Research Institute to study bacterial DNA in autism.

There are three main aims to the study:

1- Investigate the possibility that some cases of autism are associated with a range of bacterial infections, based on laboratory testing and clinical examination conducted by Dr. C. Skorupka in Edinburgh.

2- Assess the ASD children for the presence of nanobacteria following Prof Luc Montagnier’s protocol of investigations. The protocol would require a blood draw conducted at the clinic with the help of our nurse. The blood normally has to be centrifugated immediately and the supernatant extracted, then frozen to -80C and shipped on carboice to France.

3- Evaluate the efficacy of antibiotic intervention as well as behavioural evaluations (ATEC and ADOS). This would involve meeting with Dr Skopurpka and Dr. Amet every 2 months and reviewing progress over the phone in the interim month.

The opportunity to take part in this study is going to cost parents serious money:

Cost of study: £1800 (over 6 months).
Antibiotic treatment: £30-60 a month.

For that, you will get:

1. A scan using Montagnier’s new “resonance” screening system for bacterial and virological material.

2. A “very sensitive PCR assay”

3. A progress review by Dr Skorupka and Dr Amet every two month’s, plus interim phone reviews.

4. A blood test at the start of the treatment, and after 6 months of treatment.

5. Behavioral evaluations at the start, and after 6 months of treatment.

The study is restricted to 12 autistic children, involves PCR, has no controls, and involves blood tests. Any alarm bells ringing yet?

The webpage about the study does not show evidence of authorisation by the MHRA (perhaps surprising given the anti-biotic treatment), or having undergone any ethical review in the UK (perhaps surprising given the blood tests and antibiotic treatment in a vulnerable group of children). I have emailed the Autism Research Institute to ask for clarification on this point, and have yet to receive any confirmation of any authorisation. I have therefore emailed the National Research Ethics Service and the MHRA Clinical Trial unit to see if they are aware of the study being registered.

In 2008, when Montagnier was receiving his Nobel prize, The Daily Mail ran a news story “The Great Autism Rip-Off” about the biomedical industry that feeds on vulnerable families with autistic children. The Autism Treatment Trust and Dr Amet were featured in the article (consultation £120, £480 for tests including urine and hair tests, follow-up £400).

At the time, Richard Mills, a director of Research Autism, stated:

“Many of the practitioners who sell these treatments are no better than snake-oil salesmen. This kind of hard-sell approach is completely immoral. Lack of regulation means anyone can set themselves up and claim to be able to successfully treat autism, without any proof that it’s actually possible,”

Who would have guessed that an industry the Daily Mail exposed, would eventually attract the interest of a Nobel Prize Winner?

See also Gimpy’s blog on this study as well.

Gender Genie: JB Handley’s Results

18 Nov

In amongst the fun and games of “I’m Bonnie” something that JB Handley said intrigued me.

Sullivan claims to be a man, and is actually a woman. Anyone who reads dozens of Sullivan’s posts, as I have, would probably reach the same conclusion. It’s hard to hide your gender when you write…

I wondered what The Gender Genie would make of JB Handley’s own writing style:

There you have it – the Gender Genie thinks JB Handley writes like a girl. Now, what about Sullivan?

Woah – the Gender Genie thinks Sully is all man. Hmm.

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