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Paul Offit responds to Mark Blaxill

5 Jan

Over at Age of Autism today, financial whizz Mark Blaxill subjected Paul Offit’s finances to his usual searing intellect. I can’t quote from his post because its just to smart for me to understand!

Anyway, his conclusion has drawn the following response from Paul Offit in an email:

Just for the record: I no longer financially benefit from the sales of RotaTeq. My financial interests in that vaccine have been sold out by either The Wistar Institute, The Children’s Hospital of Philadelphia, or me. I will, however, continue to stand up for the science of vaccines because unfounded fears about vaccines have hurt children. That is why I do what I do and why I have always done it. And I will continue to closely follow the distribution of rotavirus vaccines because these vaccines have the potential to save as many as 2,000 children a day, which is why I joined the research team at Children’s Hospital.

Seems pretty clear to me 🙂

Deadly Choices: How the Anti-Vaccine Movement Threatens Us All

4 Jan

I mentioned in a previous post that I was reading Deadly Choices and used it as the basis for a post on how much of a myth the idea of there being ‘mild’ diseases is.

I’ve (literally) just finished reading the book so I want to give it a review. I should be clear up front, I liked the book very much and I like Paul Offit too so you’re not going to find much negativity here.

The book is a clear and coherent look back at the roots of the modern anti-vaccine movement (mostly in the US but we get a sadly necessary large mention too), its leading proponents and figures. It also swings up to the modern day and looks at the contemporary anti-vaxxers such as Jenny McCarthy etc.

Sadly (from my point of view) it makes the role of modern day anti-vaccinationism clear: its mainly due to the confluence of vaccines and autism that has given rise to a politically motivated type of anti-vaxxer. To give examples we’re all familiar with its like when an out n out anti-vaxxer like the owner of the website whale.to became friends with the leaders of Generation Rescue that the initial overlap first occurred – first they borrowed material from each other then they become supporters of each other and now they follow the common goal of destroying the vaccine program in the West. That might sound a little over the top but its nonetheless true. Ask any anti-vaxxer what their goal is and that goal will be the eradication of vaccines.

Offit’s book is also a study of some of the incidents where vaccines _have_ been at fault and details how these rare occurrences are used to chronicle the side effects of vaccines and direct future safety testing. The first few chapters of the book make it clear just how important some of these tragic incidents have been to today’s safety testing. Another upcoming book that tackles this subject is Seth Monookin’s The Panic Virus and of course Offit’s own book The Cutter Incident details one such incident in great detail.

According to Offit himself:

I wrote this book for children; Deadly Choices is an attempt to stand up for them. A child’s vaccination decisions are made by his or her parents. If an adult chooses not to be vaccinated from Hepatitis B and she dies, that was her own choice to not be vaccinated. What bothers me is that children aren’t making that choice. Who represents the children?

And he’s absolutely right. In the same vein, whilst Deadly Choices is not an autism book per se, it should be the responsibility of the autism community to spread its message far and wide, partly because its the right thing to do and partly because its the modern day autism community that has spearheaded and led the contemporary anti-vaccine message. We have some wrongs to right.

Professor Simon Baron Cohen endorses Neurodiversity

16 Dec

Neurodiversity, that much misunderstood, much maligned concept has been dragged through the mud for years by people determined to misunderstand it and misrepresent it. We all know who these people are.

However, it also has its supporters and people determined to understand it on either a social or personal level. One such person is Professor Simon Baron-Cohen.

In an interview with the Encyclopaedia Britannica blog Professor Baron-Cohen was asked:

Individuals with Asperger syndrome often use the term “neurotypical” to describe normal people, and in an effort to lessen the stigmatization associated with autism as a medical condition, the Asperger community has initiated the so-called neurodiversity movement. Can you briefly describe the neurodiversity movement and its implications on the diagnosis of autism spectrum conditions?

To which he replied:

The neurodiversity movement has been a very positive influence in reminding us that there is no single pathway in neurological development, but there are many ways to reach similar end-points.

…

Stigmatizing anyone, whether they have autism or any other characteristic, is wrong, since the point about these labels is not to pick out the person in order to make their lives worse, but to help others understand their special needs and qualities.

How nice to see a researcher who _gets_ it.

Bring the crazy – Fecal Transplant

9 Dec

There’s a few places around the interweb that you can always count on for a good old dose of craziness. One of those is the Autism Web forums, where the latest trend being discussed is Fecal Transplant.

Yeah. Fecal Transplant.

It is actually a known therapy to attempt to cure

…pseudomembranous colitis (caused by Clostridium difficile), or ulcerative colitis which involves restoration of colon homeostasis by reintroducing normal bacterial flora from stool obtained from a healthy donor.

Feeling a bit icky yet?

But like so many known treatments for known ailments (chelation for example), the extreme biomed party like to put their own unique twist on things:

Ok, you guys, I got some info for you, please do not hate me 🙂
Here is how this procedure was done by that physician in canada who does not practice anymore.
you collect the stool from a healthy relative (mother, father , so on) for a week in a bucket, no preservatives or cooling. Then mix well, fill in a decorating cone (that cloth cone you use to decorate a cake).
Use the cone as an enema to empty all the content in the patient’s colon. The patient needs to hold that as long as possible.

Does that in theory mean no more GFCG diets, yeast treatments, mega supplements if it works right? Is there the potential for this to actually reverse autism, then? With the autism/gut connection it sure makes sense. I’ll admit I didn’t read this post initially because it sounded so gross, but now that I’ve started to look into it…..it may really work.

Hooray!!! Playing ‘doctor’ via the internet and subjecting your kids to it!! Just wonderful.

Alex Barton wins $350k

3 Dec

You may recall the case of Alex Barton the (then) five year old boy who was ‘voted‘ out of his class:

Melissa Barton said she is considering legal action after her son’s kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

This was one of the few instances the whole autism community spoke as one to voice their outrage.

Anyway, time has moved on and today it has been announced that Alex Barton has won $350k damages. Good for him.

And I do believe that. It will be good for him. However, I wonder if it is good for the issue of wider autism advocacy. Whilst I believe it is right that he should win this award I notice that:

The teacher who held the vote, Wendy Portillo, was originally suspended a year without pay. The school board has reversed the decision and has reinstated her.

How does this help future autistic children coming through this teachers classroom and who will be exposed to her (to use a very kind word) strange ideas about what autism is and how best to deal with it?

It’s my opinion that she should’ve continued to be placed under suspension (with or without pay) until she had completed a course in autism awareness. That in fact should’ve been the very _least_ that should’ve happened.

Portillo is an educator. An educator at the prime point in a pupil’s life. The lessons and attitudes she shares with them will stay with them for the rest of their lives in some shape or form. At the point she decided to ridicule young Alex Barton she had an opportunity to teach her class the _right_ way to deal with the issue of behaviour in the wider world and also to provide a ‘teachable moment’ to her pupils about what autism was and the nature of autism. She elected to do neither and instead decided to make a mockery of Alex Barton.

The lesson of this incident must stay with the autism community. Autistics are prime targets for ridicule and bullying – even from adults who should know better. We must strive as a whole community to find ways to ensure this doesn’t become any more common than it already is.

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.

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!

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.

Society vs Individuals

17 Nov

In amongst yesterdays fun and games, the author of the paranoid piece itself, JB Handley included the following statement:

What parent of an autistic child would write, “my main concern is to create a better world for all people, but especially for people with disabilities. Autism is a great challenge. People with autism deserve respect and support”? Give me a break! A real parent would only have one main concern, the concern we all share: giving our own child the best possible life!

I commented briefly on this paragraph by Handley but the more I mulled it over, the more I thought it deserved its own blog entry.

There are those that believe that even though they are parents, they have a responsibility to society and particularly to the society in which their own child belongs. Sullivan’s child, like mine, is autistic and therefore disabled (amongst other things) and so we (and many of our online friends and colleagues) believe that we owe a debt of responsibility in our writing to both this particular society. We believe this for numerous reasons:

1) The betterment of that society is the betterment of the society in which our child resides.
2) Its simply the right thing to do.

However people such as JB Handley clearly believe their own child and no one elses is important. There is no such thing as society in this world view.

This tallies neatly with their other set of beliefs. I’m talking of course about vaccination. To choose to vaccinate is a supremely societal act. When you vaccinate you are saying that not only do you believe in protecting your _own_ child, you believe in protecting the society around him/her. The concept of herd immunity illustrates this perfectly:

More than a hundred years ago, scientists were noting that not everyone had to be vaccinated against smallpox to stop an epidemic in its tracks*. Scientists also noticed that when they were wiping out smallpox, not everyone needed to be vaccinated to have the disease disappear. In many places, it was enough if 80% of the population could be vaccinated and revaccinated in a 4-5 year period.

Why do we do this? Why do we need to protect the herd? We do this because no vaccine is 100% effective. There will always be people who cannot be vaccinated and these people need to be protected. Why? Because its the right thing to do.

Anti-vaccinationism takes the directly opposite path. They claim – as does JB Handley – that it is only ones _own_ child that matters and that society can go hang. By electing not to vaccinate they not only put their own child at risk, they also put the herd at risk. They have forgotten that one of societies greatest accomplishments was learning to work together for the common betterment of us all.

One of the things that speaks most to not just Handley’s set of beliefs but the beliefs of those he speaks to is the idea that anyone could find what Sullivan said as anything but crazy:

A real parent would only have one main concern, the concern we all share: giving our own child the best possible life!

Remember that when these parents march ‘together’ they are nothing of the sort. They are a group of individuals looking out for No.1 and No.1 only.

Study finds evidence of gender bias toward diagnosing boys with autism

17 Nov

As dad to a daughter and ‘step-dad’ to a ‘step-daughter’ who are both autistic, I always find stories and studies like this interesting:

With the severity of autistic traits held constant, boys were more likely to receive an ASD diagnosis than girls.

And

“We wanted to find out what distinguishes those children without diagnosis but with autistic traits from those who have received a formal ASD diagnosis in the clinic,” explained lead researcher Ginny Russell, from Egenis at the University of Exeter. “We thought that there may be social and demographic factors that explain why some children are diagnosed and others are not. Understanding social factors that act as access barriers may provide useful insights for clinicians in practice.”

And one of those things that they found was that boys were more likely to be diagnosed than girls. Also found was the results that ethnic origin, maternal class and mother’s marital status played no part in receiving a diagnosis whereas the average age of mothers with an ASD diagnosis was 3 years higher than in the population generally.

Financial hardship, partner cruelty and affection, home ownership status, maternal mental health, substance abuse, maternal psychopathology, and being in trouble with the police showed no significant associations with a child receiving an ASD diagnosis.

All this backs up the idea that diagnoses – or the art of diagnosing – autism depend on social factors as well as behavioural and biological factors.

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