Archive | 2007

Dan Olmsted, Jeff Bradstreet, Frank Noonan and Mayer Eisenstein Need to Come Clean

19 Sep

It is well known that Dan Olmsted has repeatedly argued that autism is virtually non-existent in unvaccinated populations. The following is just one example of his writings on the subject.

But this column identified several groups that might fit the bill -- from the Amish in Pennsylvania Dutch country to homeschooled children to patients of a Chicago family practice."I have not seen autism with the Amish," said Dr. Frank Noonan, a family practitioner in Lancaster County, Pa., who has treated thousands of Amish for a quarter-century."You'll find all the other stuff, but we don't find the autism. We're right in the heart of Amish country and seeing none, and that's just the way it is."

In Chicago, Homefirst Medical Services treats thousands of never-vaccinated children whose parents received exemptions through Illinois' relatively permissive immunization policy. Homefirst's medical director, Dr. Mayer Eisenstein, told us he is not aware of any cases of autism in never-vaccinated children; the national rate is 1 in 175, according to the Centers for Disease Control and Prevention. "We have a fairly large practice," Eisenstein told us. "We have about 30,000 or 35,000 children that we've taken care of over the years, and I don't think we have a single case of autism in children delivered by us who never received vaccines."We do have enough of a sample," Eisenstein said. "The numbers are too large to not see it. We would absolutely know. We're all family doctors. If I have a child with autism come in, there's no communication. It's frightening. You can't touch them. It's not something that anyone would miss."

(source) 

Jeff Bradstreet has also made the same claim.

Earlier this year Florida pediatrician Dr. Jeff Bradstreet said there is virtually no autism in home-schooling families who decline to vaccinate for religious reasons -- lending credence to Eisenstein's observations.

(source)

Both Olmsted and Bradstreet have clamored over the years for a prevalence study of autism in unvaccinated populations.

Fast forward to June, 2007 when Generation Rescue released the results of a phone survey they had commissioned. Now, it’s true that the survey had serious methodological flaws, and the way Generation Rescue chose to characterize its results was dubious to say the least; but there are couple things that are salvageable about the survey.

  1. It did manage to locate a fairly significant population of unvaccinated children, just as Olmsted and Bradstreet had wanted.
  2. Even conspiracy theorists would think it’s absurd to suppose Generation Rescue was payed by “Big Pharma” to doctor the results of the survey. (Or maybe not.)

The survey located 991 unvaccinated children, out of which 37 (3.73%) were reported to have an ASD diagnosis (source). A sample size of 991 is not bad. For the more statistically inclined readers, the 95% CI around 3.73% is 2.55% to 4.91%. We’re talking roughly 6.6 times the prevalence previously found by the CDC in a phone survey of the US general population.

Olmsted et al. had assured us autism would be virtually non-existent in unvaccinated populations of children. We were not even told it would be twice as rare or anything like that. Virtually non-existent is what they told us, clearly implying that almost all autistic children are made autistic by vaccines.

In my view, this is one of the most ridiculous and spectacular failures of a prediction I have ever seen. It has to be right up there with WMDs in Iraq. David Kirby’s failed prediction on the California DDS 3-5 cohort pales in comparison.

I believe, however, that a more important issue than Olmsted et al. being wrong is how the prediction could have failed in the first place. OK, maybe autism really is rare among the Amish for reasons unrelated to vaccination. But what about the home-schooled children? Are we to believe there’s something else about home-schooling that completely prevents autism?

Evidently, someone has been making stuff up. I don’t see any other way around it. Perhaps Olmsted was just reporting. But there were claims made that could not have been true, and someone is responsible for them. I think Olmsted et al. need to explain themselves if they desire to preserve some slight measure of credibility.

We’re not talking about a trivial issue. Broad claims about the effects of vaccination no doubt have an impact on public health. Unsubstantiated fear-mongering of that nature cannot be given a pass under any circumstances.

I anticipate someone might point out that the survey’s automated introduction had a flaw in that it likely selected for persons interested in the anti-vaccination debate, a flaw Generation Rescue admits to. Sure, parents of unvaccinated autistic children are probably not likely to hang up the phone in such a survey. But how many times less likely to continue with the survey would parents of non-autistic unvaccinated children have to be? In a country where vaccination is a requirement for school entrance, most parents who don’t vaccinate their children must have very strong views about vaccination. Households with unvaccinated children had to have been likely to continue with the survey, regardless of the presence of autistic children in the household.

Generation Rescue’s survey, in fact, found that 6% of the children in the survey were not vaccinated. Note that Smith et al. (2004)had found that only 0.3% of US children aged 19 to 35 months had received no vaccines. (Older children would obviously have a similar or lower rate of lack of vaccination.) Granted, Smith et al. also found that some counties in California had the highest rates of lack of vacination in the US, but still.

It’s obviously very difficult to go from virtually non-existent to 3.73% of the unvaccinated population, even if you consider survey flaws and confounds. It just doesn’t add up.

Escalators.

16 Sep

  In retrospect I will realise that I am already quite stressed when I get off the train and walk through the doors to be confronted by the steepest set of escalators I have ever had the misfortune to encounter. There have been changes and garbled messages that have added to my uncertainty and now, having panicked at a change in the ontrain destination screen I have got off the train a stop early and now have to explain to my friend why she has to go further out of her way to meet me. I am feeling thoughtless in the sense of being unable to think clearly and thoughtless in the sense of inconveniencing someone and my mood, therefore, cannot be said to be ideal.

 The escalator rises up, steep and relentless in its motion. Never stopping, constant up and rolling motion that doesn’t allow for any individual difficulties the person might have when encountering it. I read the instructions several times, then take my older lad out of his buggy and get him to hold my hand. There are no worries about him, he adores going up these contraptions and most of the time I’m pretty ambivalent towards them, Except today, when having to hold his hand and hold onto the buggy as well means that I can’t get a balance on the bottom step. To those watching my actions would probably seem ludicrous, even laughable. I take a step and place my son on the step as well. I move my other foot forward and then sway backwards. It’s an act that should be simple, should present with no difficulties and yet I cannot counter my co-ordination problems. Later, I will realise that I should have placed my son on first and got on the step below him, dragging the buggy behind me, but now, in the state I am in, rational thought and myself are not compatible.

 Then it happens. My legs seem to freeze, my mind stops even trying to think of solutions and I’m standing at the bottom at in tears, trying to quell the rising wave of panic that is starting to grip me. I remain gripped by an inertia brought on by stress and worry and uncordination, an intertia that hasn’t held onto me this strongly for weeks and I’m staring up at the seemingly impossible before me.

 It appears to be an eternity, but i nreality can only be a couple of minutes before the next train pulls in and a man approaches the same set of moving steps. Straightaway he offers to hold the buggy and, with more gratitude and relief than I can show I thank him and take my son’s hand, no longer trying to balance and co-ordinate to the same extent. I phone my friend who later tells me that there is, in fact, a lift I could have taken and had I gone out a different exit I would have discovered this. I do my upmost to pretend this was not said.

  And now I am looking through a recipe book, trying to work out how to go about preparing one of the meals. “A medium sized onion.” How large is that exactly? What if I go to the supermarket and there are no medium sized onions? “Dripping?” I can’t abide the thought of dripping. Can I dry fry it? Use oil? There are so many steps to this recipe, I’ll never remember them, I’m getting confused just looking at it and yet the result would be rather nice.

 I look at it again. Look at the ingredients. Check my cupboard and realise I have most of them and those that I don’t have can be replaced. I put down the book, ignoring it and start making up my own recipe. It turns out to bear as much resemblance to the one in the book as a domestic cat does to a tiger, but it works well. I have found alternative to a seemingly insurmountable problem.

    There are times when the escalator cannot be tackled on its own. Sometimes someone will lend you a hand. Sometimes you will find an alternative and bypass the problem. Sadly, sometimes you will be left standing at the bottom waiting until you can see a way up it yourself. For those of you standing at the bottom of your own escalators I hope someone carries some of your load for you, or directs you to a different way.

Conflicts of Interest: Real and Imagined

14 Sep

One of the favorite refrains of the mercury militia is that the mountains of scientific findings that undermine the thimerosal/vaccines and autism hypothesis are all fatally flawed by conflicts of interest with the pharmaceutical industry.

The National Autism Association is particularly aggressive with this canard. The organization smeared a recent study, which found no link between RhoGam and autism, as the “Best Science Drug Company Money Can Buy”

“This study is just another example of the pharmaceutical industry’s corruption of research to suit its own purposes,” according to National Autism Association president and parent Wendy Fournier. “They back the study designs that give the desired results of no harm.”

In an Orwellian defense of discredited researcher Dr. Andrew Wakefield, NAA board member Scott Bono stated:

“Implicating the safety of vaccines such as MMR isn’t acceptable to drug companies or government officials who want to protect the vaccine program itself at the cost of the health of children.”

The NAA conflict of interest smear campaign extended to the media during the recent Autism Omnibus trial when the organization was faced with a barrage of media reports reflecting the scientific consensus that there is no link between autism and thimerosal and/or vaccines. Dr. Nancy Snyderman of NBC News became enemy #1 when she suggested that financial gain was a motive for many of these lawsuits. NAA claimed she was acting as a shill for the pharmaceutical industry because of her long ago previous employment with Johnson and Johnson.

According to the NAA, even the government is under the influence of Big Pharma. In this NAA press release, Dr. Jay Lieberman, who presented safety data on thimerosal at a CDC meeting, is accused of “white washing” the data because of his work with various pharmaceutical companies.

“Dr. Lieberman has been a consultant to Merck, GlaxoSmithKline, and Sanofi-Pasteur and is on the speakers’ bureau for all three vaccine-makers, who have used, and currently use, thimerosal in their products. “We have been very concerned about Dr. Lieberman’s conflicts of interest,” commented Executive Director Rita Shreffler of NAA. Shreffler says that NAA requested that a counterpoint speaker without ties to drug companies be allowed to present current, peer-reviewed toxicological data and the request was denied. “ To leave this presentation in the hands of those who have profited from, and continue to use thimerosal in some of their products is consistent with the CDC’s history of concealing the consequences of injecting mercury into humans,” said Shreffler.”

Obviously, the NAA wants us to believe that conflict of interest is a driving force that prevents the public from learning “the truth” about thimerosal/vaccines and autism.

To extend their scenario to its logical conclusion means that pharmaceutical and academic scientists actively suppress or pervert relevant data in exchange for financial gain. The American Academy of Pediatrics is willing to harm the very population they serve in exchange for complimentary travel, meals and baubles. Government employees are forbidden to reveal “the truth” because political systems are corrupted and silenced by the pharmaceutical lobby. Media outlets throughout the world suppress a Pulitzer Prize worthy story in exchange for pharmaceutical advertising revenue. All told, hundreds of thousands of people are complicit and willing to endanger their families, friends and the public’s health in exchange for professional remuneration, campaign donations and advertising revenue.

Collectively, these accusations are absurd. But individually, they can help plant seeds of doubt in the uninformed or casual observer and obscure the overwhelming scientific evidence that undermines the thimerosal/vaccine hypothesis. This strategy is also effective as it posits the NAA as a referee of professional ethics. However, in truth the NAA is riddled with very real rather than imagined conflicts of interest.

Meet the NAA Litigants

Several NAA Board members, Rita Cave Shreffler, Claire Bothwell, Laura and Scott Bono, Rosemary Dubrowsky, Lori McIlwain, and Lyn Redwood are or were litigants in vaccine cases. Ms. Redwood is/was also suing Georgia Power claiming that the mercury they emitted to generate power contributed to their child’s autism. Dr. Jeffrey Bradstreet, the organization’s, medical advisor, witch DAN! doctor, resident exorcist, and would-be expert witness also has claims before the vaccine court.

The organization’s board members have fanned out to push their thimerosal/vaccine agenda to government and scientific organizations. They have testified on Capitol Hill, planned and participated in federal research meetings, and served as advisors for federally awarded grants. All the while these people are suing the federal government and pharmaceutical companies. Their lawsuits represent a clear conflict of interest where the policies they advocate have bearing on their lawsuits. This certainly does not pass the sniff test. Most taxpayers would be angry to learn that their government is in effect helping them in their lawsuits against the federal government. Although it is extremely unlikely that they will ever prevail, their advocacy risks sidetracking productive research in favor of chasing after evidence for a lawsuit.

Jeffrey Bradstreet Addresses the IACC

The Interagency Autism Coordinating Committee (IACC) directs federal funding decisions among the various federal agencies that have interest in autism. Top brass and scientists attend IACC meetings. Presenters at IACC meetings are high level government agency heads or accomplished scientists. However, in November 2006, Jeffrey Bradstreet was on the IACC agenda giving a talk entitled, “The Role of Environmental Factors in the Pathogenesis of Autism:Phenotypes, Lab Markers, Clinical Interventions and Suggested Areas for Research”

The talk is a tour-de-force of junk science, skewed findings, lies, and damn lies. Every crappy paper ever smuggled into a medical journal on the imaginary association of thimerosal to autism is presented. And of course, at the end, Bradstreet has the audacity to suggest that NIH prioritize funding into biomarkers (read provoked urine tests for mercury) environmental toxins (read thimerosal) and DAN! Treatments (read chelation, HBOT, methyl-B12). He further suggests that this junk science be given program names within NIH and incorporated into existing Autism Centers of Excellence

Now, I would bet that the IACC members did their best to stifle laughter and not roll their eyes during his talk, but I’m not laughing. As someone concerned about autism, I’m brought to meltdown that Jeff Bradstreet, vaccine litigant and quack, was given a platform at the central seat of power in the U.S. for autism research funding. Why is the federal government encouraging a litigious fringe element? One has to wonder if the feds are aware of these conflicts.

Laura Bono and Lyn Redwood Plan IOM Meeting

In April, the prestigious Institute of Medicine held a scientific workshop Autism and the Environment. Laura Bono and Lyn Redwood were appointed to the planning committee for this meeting along with others in the mercury camp. Ms. Bono was given the floor to open the meeting where she excoriated the CDC for imagined failures and demanded that the federal government, “Grant money only to genetic vulnerability studies that have a clear environmental hypothesis.”

How many litigants suing the federal government are given the opportunity to infleunce federal research dollars at a very high level scientific meeting? Most tax payers would find this arrangement perverse and question the appointment of people with such obvious conflicts of interest. Do you think Ms. Bono or Redwood revealed their conflicts to the IOM?

Ironically, as Ms. Bono issued her demand that genomics research be halted, a seminal genomics paper was published which found that genetic copy number variations account for a significant portion of autism. This paper was the basis for yet another seminal paper which advanced a new and compelling unified theory of sporadic and inherited autism.

If officials at the NIH were to heed Ms. Bono’s self-interested and uninformed diatribe, science would be losing out on major discoveries into the causes of autism. Ms. Bono is a marketing professional with absolutely no understanding of medical research. She has no business at such a meeting and it’s more than time that the NAA is left out in the cold. It is shameful that federal officials have given this litigous group a seat at such an infleuntial table.

Lyn Redwood Decides Funding for Federal Autism Grants

Speaking of seats at the table, Lyn Redwood was recently named to an advisory panel that will direct $7.5 million in funding for autism research through the U.S. Department of Defense (DoD). This panel will be responsible for selecting grants that will be funded. The NAA press release about the DoD autism program states, ”The DoD reached out to stakeholders in the autism community in an effort to identify under funded areas of investigation and solicit feedback regarding the most promising areas of research.”

It is extremely troubling that the DoD reached out to a litigant suing the federal government and put them in a position to select federally funded research studies that have direct bearing on her lawsuit.

The overwhelming scientific data does not support any association between autism and thimerosal. Nonetheless, the NAA and like-minded organizations are working to fund research that will force a link. As you can imagine, the “scientists” who support the thimerosal/autism hypothesis are on the extreme fringe of research. They cannot meet the scientific rigor required for NIH funding and so they are desperate for other funding sources. Isn’t it convenient that Ms. Redwood became a panel member overseeing $7.5 million in autism research funding?

The DoD advisory panel conflict of interest policy clearly states that panel members are to divulge any and all conflicts of interest and recuse themselves from the grant selections or from the panel entirely.

Someone contacted the DoD about Ms. Redwood’s appointment as her involvement in litigation is an obvious conflict of interest. The news seemed to come as something of a surprise. A DoD representative responded that:

“The CDMRP take matters surrounding Conflicts of Interest (COI) very seriously and have had COI policies in place since the inception of our programs in 1992. As in other instances of potential COI as noted in our policy, the CDMRP will ensure that members of our 2007 Autism Spectrum Disorder Research Program Integration Panel (IP) are not claimants against the government before they participate in the review of proposals containing vaccine-related research. Our COI policy is attached. As you’ll note, IP members are expressly told that they “… will avoid any actions that might give the appearance that a conflict of interest exists or could reasonably be viewed as affecting objectivity in proposal review.” This means that IP members must either recuse themselves from reviews for which they have a COI or remove themselves from the panel altogether. We will ensure that this happens, and maintain the highest level of ethical accountability for our scientific processes, as the CDMRP has been doing for many years.”

So once again, it seems an NAA board member failed to disclose a clear and concrete conflict of interest that should have precluded them from ever becoming a part of the DoD Autism panel.

You’d Think I Was Making All This Up

When I was younger, I was accussed of having an active imagination. In fact, I dreamed an entire television show while staring at a snow globe. But this is not fiction. It’s time the federal government put the mercury militia to the curb and drive off. If you agree, I suggest contacting IACC member agencies—especially the National Institute of Mental Health which oversees the IACC—and the DOD Autism Program to express your displeasure.

It’s time that other voices within the community be heard. Voices that are free of conflicts of interest.

Cultural Mitigation

14 Sep

Recently, I had a conversation on another blog with an autistic single mother who was concerned about meeting the needs of her more social child.  She wrote that there was a whole lot of social stuff she didn’t connect with, or even notice, and that having to hand her child off to other people who could do a better job of teaching the child about social expectations bothered her.

I replied that children always differ from their parents in some ways, that being able to recognize and accommodate her child’s differences meant she was a responsible parent, and that the arrangements she made for her child’s social activities were similar to a parent with no interest in sports handing off an athletic child to a coach for regular practices and games.

Another parent pointed out that raising an autistic child, when there are no other family members who are autistic, also requires a significant amount of interaction with professionals and others who may have a better understanding of the child’s needs.

She wrote that, while she appreciated the encouragement, she thought that her lack of conventional social behavior might be detrimental because her child would model her ways of interacting, without being aware that society did not accept such ways.  In this regard, she felt that her situation was unlike that of a non-autistic parent raising an autistic child.  Also, it was unlike that of a married autistic parent because, she wrote, the non-autistic parent could mitigate any detriment from the autistic parent’s social differences.

I had to agree that there was a significant cultural issue here.  When parents raise their children in a minority culture—whether we’re talking about autistic families or any other culturally distinct group—the children are likely to have a harder time learning the ways of the majority.  However, the existence of minority groups contributes to the richness of the mainstream culture.  Different perspectives, behaviors, and cultural expectations are vital to the healthy functioning of a modern democracy.

This was a hard burden to place on a child, she commented.

Yes, and it always has been hard, I thought, for all the minority groups over the years that have had to decide how much of their culture they should sacrifice for the sake of fitting in.

Actos – The New Fad

14 Sep

In the world of autism quackery, I’m of the growing opinion that the ‘doctors’ who play about with the drugs they experiment with on autistic kids sometimes sit around in a big club somewhere one-upping each other:

Chelation? Pfft – thats nothing. I give all my kids IV Chelation…..Oh yeah, well, I give all _my_ kids IV Chelation of garlic and vinegar….[an impressed rumble goes around the table]….thats nothing – I give my kids HBOT…..Really? HBOT? Well, I give my macaques, I mean, kids _Lupron_….

And there it rested for awhile. That is until a new kid on the block came long. Actos. What the hell is Actos? Its a drug used to treat Type 2 Diabetes. Why’s it being used to experiment on autistic kids? Well, the DAN! party line is that autism is or causes or whatever neuroinflammation. Actos reduces inflammation.

In a Newsday story DAN! doctor, Marvin Boris tells how he uses Actos all the time and in fact has co-authored a paper on its use:

Discussion and evaluation: In a small cohort of autistic children, daily treatment with 30 or 60 mg p.o. pioglitazone for 3–4 months induced apparent clinical improvement without adverse events. There were no adverse effects noted and behavioral measurements revealed a significant decrease in 4 out of 5 subcategories (irritability, lethargy, stereotypy, and hyperactivity). Improved behaviors were inversely correlated with patient age, indicating stronger effects on the younger patients.

Conclusion: Pioglitazone should be considered for further testing of therapeutic potential in autistic patients.

Happy days right?

Well of _course_ not. Would I be blogging about it if it was?

First problem I thought of was the discrepancy between sample size (25) and conclusion. At _best_ I would think of this as a pilot study.

The second issue was the utter lack of clarification regarding Actos and what exact risks were spelled out to the patients or their guardians. Actos is pretty heavy stuff.

Last week Actos received a “black box warning” from the U.S. Food and Drug Administration, the agency’s strongest level of caution. Actos, and a similar diabetes drug, Avandia, can increase the risk of heart failure, the FDA warned.

A black box warning means that the drug in question has a large black box drawn the text of the warning just to make it perfectly clear what the issues are. The warning confirms the Newsday story:

ACTOS is not for everyone. Certain patients with heart failure should not start taking ACTOS. ACTOS can cause or worsen congestive heart failure.

And whilst the study _claims_ Actos has a good safety record, what it neglects to mention is that:

Its safety in….people under 18 is not established.

So here we have a situation wherein a heavy duty drug is being used in a very off-label way, on a population it has no safety record for and which carries a black box FDA warning regarding its side effects.

Now, maybe its just me but two things strike me almost immediately about all this.

Firstly, call me silly and old fashioned, but I would much rather have an autistic kid then take a chance on having a dead kid. But maybe thats just me.

Secondly, all these parents who scream blue murder about the evil Big Pharma and complain bitterly about the safety records of thiomersal are apparently more than happy to fall into the loving embrace of this medication, made by Big Pharma and with no safety record at all.

My guess? Dr Boris wins at the DAN! bragging contest this year.

A parent’s thoughts on curing autism

14 Sep

Just over 2 1/2 years (and just over 200 posts) ago, I started an autism related blog called 29 Marbles. Writing that blog helped me better understand not only autism, but my thoughts and feelings about autism. As I’ve come to better understand these things, I’ve found that I’m writing less and less. I was considering just stopping, but like Kev I just couldn’t bear the thought. I was very happy to take Kev up on his offer of participating in an autism team blog.

The “c” word – cure – was back in my mind this week thanks to Kristina Chew’s post The Cure Question earlier this week. By way of introduction (for those who don’t know me), I thought it might be good to give you my thoughts on this question.  (This is an update of an earlier post on 29 Marbles.)

= = == === =====

In any discussion about autism, especially with parents of newly diagnosed children or friends/family who have no direct experience with autism, the subjects of cure and prevention will inevitably come up. “Can you fix him?” “What went wrong?” “I’m trying to get pregnant, is there anything I can do to make sure my kid isn’t autistic?”

The answers to these questions depend quite a bit on whom you ask, and also when you ask them. In one of my early posts to 29 Marbles, I wrote the following:

“We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?”

Pose this question to a group of parents of children just diagnosed with autism, and chances are you would get a very quick, passionate, and nearly unanimous response of YES!!! Ask this question to those parents of older children, though, and the responses would likely be more hesitant, not quite as passionate, and definitely not unanimous.

In (R)evolutionary parenting, MOM-NOS describes how her feelings have changed toward her son’s autism over time:

When Bud was initially diagnosed, I viewed autism as “other” – an interloper, a roadblock, an obstacle. I saw it as something to take care of and to get rid of as quickly and as efficiently as possible.

Later, I began to see autism as a part of Bud (and not apart from him). I saw it as a small part, but a significant part.

But as I came to understand Bud better, I learned that his autism is not…one small part of him. It infuses every part of him and it shapes who he is in this world. It makes some things terribly difficult for him. It makes other things laughably easy.

The other key thing we must consider as our kids grow older is that they will develop opinions of their own about their ‘condition’ in life. If you were to present me today with the cure question I asked above, I would be unable to answer. Not because I’m undecided about what I would do, but because I think at this point (15 years old) it is no longer my decision alone to make. Sure, as a parent I would expect to have some input, and would do my best to make sure my son understood the implications of both options.

If you had asked me the question 13 years ago, I would have had to decide. Not knowing then what I know now, I have no doubt that I would have quickly and unreservedly said, “Yes.” But if I had known then what I know now, what would my answer have been?

pregnant pause

In many ways, asking the cure question at the initial diagnosis (assuming it was early enough) is the same as ‘preventing’ autism in the child; if the autism is removed before it has a chance to “infuse every part of him and it shapes who he is in this world,” then the autism will have been prevented from being a defining part of the child. Is prevention a ‘bad’ thing? Again, it depends on whom you ask.

If you are talking about pre-natal testing, the discussion will range from “with this test you can determine if your child will be autistic or not and decide whether or not you want to have him” to “this is the first step to eugenics and wiping out of autistics.” I’m choosing not to engage in this discussion in this post, though I’m sure it will come up in the comments and in later posts.

If, however, you are talking about prevention through a “shot” like I mentioned above (I know, I know, this is not the way it would probably work – please bear with me), how would you answer the question. What factors would you consider?

I can’t help but go back to the questions in my mind that prompted me to write To hear or not to hear. What do I want life for my son to be like? What options do I want him to have? What will he think of my decision when he gets old enough to understand what I have done?

If I had a child who was born deaf and I was told by the doctors that through surgery my child would be able to hear, but the longer I waited the harder it would be for my child to transition from a non-hearing world to a hearing world, I must admit that I wouldn’t hesitate any longer than it took me to figure out how to pay for it. Why should I think any differently about autism?

By saying I would prevent autism at an early age if I could, I’m not saying that I don’t value my child as he is now. I can’t imagine these past 15 years without him (or his autism), and it is safe to say that my career path, my wife’s career path, and my other son’s life would be completely different had we not lived in Autismland all this time. But at the same time, I have no doubt that life without autism would have been just as enjoyable and rewarding, yet filled with the more ‘typical’ challenges that parents of teenage boys experience.

Parenting is hard, mainly because it is a long-term investment of time and effort (and money, of course) with a high degree of uncertainty about the final outcome. The things I do today will have impacts years from now that I could never imagine. I see one of main roles as a parent as the one who sets the path along which my children will begin their journey in life. Along with that, it is my job to help them understand the path they are on, the future paths that lie before them, and an understanding of how to navigate the world.

Or, as MOM-NOS says in (R)evolutionary parenting:

I will try to help him build the foundations that will serve him best [as an autistic person in a largely neurotypical world] – foundations of relationship, flexible thinking, broadband communication, mindfulness. And then, ultimately, I will need to step aside and let him use the things he’s learned.

Or not use them.

My goal, I suppose, is to help Bud have options, to let him know that his life need not be driven by fear and limitations, nor by the prejudices of small-minded people.

Parenting is hard, and every parent approaches the challenge in different ways. I don’t like the way some people parent their children, and I am in awe at how others make it look so easy. This applies to both “typical” parents and autism parents. But it is not my place, nor anyone else’s I believe, to tell another parent how to raise their children. (And no, I don’t believe anyone else should tell me how to be a parent either.)

In the end, parents answer only to themselves (obvious legal/moral exceptions aside) and, when they get older, their children. I’ll leave it to them to judge.

Why Aren’t You “Scared To Death”?

13 Sep

Do you miss Dan Olmsted’s writing? He now apparently showcases his version of scientific brilliance over at Rescue Host.

Recently, he tried to pass off the Flu shots and Chinese mercury hypothesis (which I thought was David Kirby’s, but I guess I was wrong) without much more than unfounded speculation and belief.

California, of course, is ground zero as we watch autism rates keep rising — even after mercury was “removed” from childhood vaccines starting in 1999 (the situation is much more complicated than that, since more and more pregnant women and younger and younger kids are getting mercury-preserved flu shots). So if you believe as I do that autism is fundamentally an environmental illness that whacks a subgroup of susceptible kids, mercury from China — or anyplace else — is every bit as important as mercury from vaccines.

I asked him the following in the comments:

If you wouldn’t mind Mr. Olmsted, take a look at a graph of the 3-5 year-old autism caseload cohort for the past 5 years.

Such a graph would include children born at the starting point of the “removal” in 1999 you mentioned. What do you see? Does the trend look linear to you?

Do you really believe there is combined flu shot uptake and airborne mercury data that would exactly and inversely match (in dose and effect, if any) the reduction the use of thimerosal in childhood vaccines in order to produce a trendline with an R-squared value of .9954 for this time period?

You can view such a graph here.

To which he replied:

An “R-squared value of .9954” is way beyond my non-scientific expertise. All I can say is that thimerosal use has actually been increasing in by far the most vulnerable group — pregnant women — and that at least some studies suggest that greater pollution directly correlates with a greater risk of autism. If the CDC had recalled all thimerosal-containing vaccines in 1999, we’d have a genuine “natural experiment.” But we don’t. Nor will the government study autism rates in never-vaccinated kids; the survey by Generation Rescue found ominous correlations between vaccines and NDs including autism, but it’s been widely ignored.

The survey by Generation Rescue? Right. Did he just make up that part about thimerosal use increasing in pregnant women? It kind of looked like it to me, so I asked and commented as follows:

What evidence do you have that thimerosal use actually increased in pregnant women for the period immediately following the “removal” of thimerosal from childhood vaccinations? (required to make your hypothesis work)

The majority of childhood vaccines were thimerosal-free or contain only trace amounts by 2002 (more on that below). Here’s flu shot uptake estimates for pregnant women for the three years that follow:

2002 – 12.4±3.9 %
2003 – 12.8±4.4 %
2004 – 12.9±5.0 %

Source

Note: there is an increase in the estimate for 2005, but children born in 2005 and later are not old enough to be reflected in the 3-5 year-old California autism caseload cohort yet. Additionally, estimates for 2006 were back down to 12.9 percent.

Source

Mark Blaxill and JB Handley showed up in the comments following that, and Olmsted apparently did not reply further. So the question of where Dan Olmsted might have found any data to make his Flu shots and Chinese mercury hypothesis plausible, will have to remain unanswered for now. But, while we’re on the subject of data-free gibberish, have a look at a piece of something posted by Dan Olmsted at Rescue Host on September 11th.

At some point, common sense has to prevail. For instance, let’s stipulate that better diagnosis accounts for a gargantuan 36 times more cases of bipolar disorder among kids over the past 10 years. That still would mean that the condition quadrupled in a decade — suspiciously, the same decade that autism, asthma, ADD, ADHD etc. soared out of sight. The deniers have to explain away every digit of that 40-fold number, because even a “mere” fourfold increase in the real incidence would be deeply disturbing. How can anyone be certain that one-tenth of that 40-fold increase isn’t actually real? And if they can’t be certain, why aren’t they scared to death?

Emphasis mine.

An appeal to “common sense” is a sure sign that what follows is probably not data that supports his hypothesis. Is common sense really the best way to arrive at correct answers about any subject for anyone, regardless of their background? What do statements like, “An ‘R-squared value of .9954’ is way beyond my non-scientific expertise”, tell us about the context to which Mr. Olmsted’s “common sense” might be reliably applied? Is autism epidemiology likely to be anywhere near Olmsted’s knowledge and expertise?

Sometimes common sense seems like a good way to operate, but the reality is that many things in science have quite complex answers. It’s also the case that science does not have all the answers (nor does it claim to). None of this will apparently stop Mr. Olmsted from forging ahead with assertion and anecdote in the rest of his post of course.

Did you catch this part of that paragraph above?

“…suspiciously, the same decade that autism, asthma, ADD, ADHD etc. soared out of sight.”

Did you see any real data or science whatsoever that actual autism prevalence “soared out of sight” in the past ten years? Me neither. So here you go any “Flu shot and Chinese mercury” proponents, now is your chance to post that real data or science in the comments – really, Mr. Olmsted needs your help if he’s to avoid the inevitable “You’ve got nothing!”. Either that, or get him a new hypothesis to work with (something with corroborative data preferred).

As for Mr. Olmsted’s final question in that paragraph, I’d like to answer it from one perspective.

We can’t be absolutely sure that there hasn’t been some real increase in autism prevalence, there might have been. To conclude that there has been a real increase in autism prevalence wouldn’t require much more than good data that shows it’s actually true. However, to conclude that there has been a real increase without supporting scientific evidence, but based on “stories”, is unscientific, if not a bit silly.

I can’t be absolutely 100% certain that an alien abduction has never occurred, but this lack of certainty does not translate to “therefore alien abductions are real”. I can’t be absolutely 100% certain that bigfoot doesn’t exist either, but again, that lack of certainty does not translate to “bigfoot is real”. I don’t live in fear of being abducted by aliens or encountering a hairy giant biped while on a hike with the kids, despite an abundance of “stories” about these things. I’m also not “scared to death” that there could indeed be an increase in the actual prevalence of autism. It is a possibility, but I have seen no evidence of it’s truth. I do see an increase in storytelling though.

Pirates

12 Sep

  “Now this” I inform my son who is busy helping to get himself dressed, “is a pirate jumper.” I cover up one eye and then mime “jumper” for him as I do so. He doesn’t reply, but places his arms through the sleeves and then makes a good attempt at yanking the body of the jumper down. I carry on nattering to him.

 “Do you like your pirate jumper?” (hand taps heart area, hand over eye, tap arms). “Pirates say ‘shiver me timbers'” (hand over eye, shake shoulders, forearm on top of fore arm, the last one being improvised) He grabs my hand and places it onto his trousers that are lying on the floor.

 “You can put those trousers on yourself” I tell him, miming “you” and “trousers” as I do so. He stands up and immediately places both legs in the same hole, struggling and falling over.

 “Nearly”, I tell him.” “Sit down and try again.”

 He remains standing, trying to pull the waistband up, not realising why he’s finding it difficult.

    “Sit down” I tell him, adding the sign this time. He carries on with his endeavours. I’m torn between wanting to help him and wanting him to learn how to get himself dressed without any help. He appears about to tear the material on his trousers without any help. I make one last attempt to get him to sit down and the problem is solved when he falls back onto his bed and rather angrily takes his trousers off himself. The next try is rather more successful.

 “You’re going to nursery this morning” I tell him as we walk down the stairs to wait for the bus. “The bus will be here soon. Bus for nursery” (hands mime big steering wheel, hand up to face and round in circles to show the nursery).  He keeps quiet then starts humming a song about rabbits and their dastardly attempts to munch a plot of carrots.

 “Do you sing that song at nursery?” Again there is no reply. The bus turns up and he gets on it happily enough. I hope that the home school book will have enough information in it to help me talk and sign to him about what he’s done.

 Five hours later and we’re walking to the playground. He understands the sign for that now, thanks to “Something Special” doing a show about it the other day. As we’re approaching the park it occurs to me that I’m not sure where the entrance is, since we usually go to a different one. I confidently walk up to where I think it is and realise that the gate’s on another side, which means backtracking.

 “Wrong way” I tell Tom and his brother, who is sat in the buggy, though with designs on escaping the second my back is turned. “We go round”.

 This is not in Tom’s plan. We were going to the playground and now we are going AWAY from the playground. Not good. Not good at all. He says nothing but insteads sinks to the ground, tears streaming down his face.

 “We’re going to the playground” I try and reassure him. “We have to go to the gate.”

 His sobs become louder. I move to pick him up and he struggles, refusing to be carried or persuaded to walk. I look at him in despair.

 “Think!” I say to myself. “What would Mr Tumble do?”

 I kneel down besides him, my hands wiping at his face and hug him tightly. He cries for a bit more then wipes his face on my shirt. His hands move up to my chin and he starts moving it up and down, then starts to pull at my hair. One hand then moves up towards his own face and he covers his eye.

 “Are you a pirate?” I ask him, covering my own eye. He repeats the pirate sign several times.

 “Pirates say? …” I ask him

 He shakes a bit from side to side, then places one forearm on the other.

 Five minutes late my fearsome little pirate is battling  the slides.

I need your help readers

11 Sep

As you may (or may not) have noticed, my output on this blog has lessened over the last few weeks. There are lots of reasons for this – I’m working a lot more in the evenings for example – but for a variety of reasons I simply can’t blog as much as I used to.

However, I do not want to either stop blogging or stop _this_ blog. So what I am proposing is that Left Brain/Right Brain undergoes a bit of a change. Not in focus so much but more in style, content and – above all – writers.

I want to make this blog a multi-author blog. That is the first change. I want to ask you, dear readers, if you would like to consider becoming bloggers? I am not asking for any kind of commitment in terms of time or regularity but it never escapes my attention that there are some pretty damn smart people who comment on my blog (and no doubt lurk too) but who don’t own a blog themselves. I would love to see your thoughts expanded into semi-regular blog entries. I’m also aware that there are people who already have a blog but who don’t post very much – maybe you would rather move your efforts to a team based blog?

What I would really like is to get a team of say 20 people blogging which would assure that there was at least one post per day made.

You will not be censored in any way but your subjects should be about your experience with autism, your familial experience with autism or your professional experience with autism. If you write about these subjects I would only tolerate ‘acceptance’ led posts (not to say every post you make must be about acceptance but you know what I’m talking about).

I would also like to see autism science posts and posts exposing autism related quackery.I would expect these posts to be well referenced.

You can post under your real name, or a pseudonym (or both!) – you don’t even need to tell me who you are. I don’t care. I’m interested in what you say, not who you are.

I guess I would like to see this site become more of an ezine/magazine rather than a blog.

If you’re interested, let me know, either in the comments section or by email (kevleitch@gmail.com).

JB Handley’s Emerging Hypothesis

9 Sep

The Handley’s are now proud parents to a third child. Many congratulations to them. I hope their daughter gives them as much pride and happiness as my two have given me over the years.

Of course, for JB, its all about the autism. And so, he details the steps the family took to ‘ensure’ this third child wasn’t autistic. Its, um, interesting reading.

First Brad reminisces about whats on the GR site:

It’s probably worth taking a quick step back. The Generation Rescue website spells out pretty accurately how we feel about the cause of
autism:

We believe these neurological disorders (“NDs”) are environmental illnesses caused by an overload of heavy metals, live viruses, and
bacteria. Proper treatment of our children, known as “biomedical intervention”, is leading to recovery for thousands.

Yeah, you do _now_ – it used to be:

It’s nothing more than mercury poisoning

And whilst Brad was happy to carry this simple message to the TV masses, he’s seemingly less happy to go back on and say, well no, I was wrong actually. Its in fact ‘overload of heavy metals, live viruses, and bacteria’. And as for ‘leading to recovery for thousands’…heh yeah, whatever.

But anyway, back to the Emerging Hypothesis of preventing autism. What has JB Handley come up with?

we began to develop a plan to prepare for life before and after birth that we believed would reduce the chances for another autistic child.

And what does this plan entail?

Early Preparation for Mom (prior to conception):

– Switching to a gluten/casein free diet
– Eating organic foods and avoiding all artificial colors, flavors, and preservatives
– Limiting sugar
– Focusing on gut health through a combination of anti-fungal treatment, beneficial bacteria re-population, and digestive enzymes
– Detoxifying the body through a combination of chelation and natural detoxification techniques like FIR sauna, NDF Plus, Zeolites, etc.
– Adding a pre-natal vitamin and B-12

During pregnancy:

– Maintaining all dietary approaches listed above
– Avoiding all vaccines
– Avoiding any environmental risks like lead paint, home construction, cleaners and solvents, chemicals, etc.
– Avoiding antibiotics except in life-or-death situations
– Avoiding x-rays and sonograms, unless high-risk birth issues exist
– Continuing supplementation of pre-natal vitamins, probiotics, digestive enzymes, and B-12
– Proper supplementation of mom’s methylation cycle based on genetics

After birth:

– Maintaining all dietary approaches and supplements listed above while breastfeeding
– Holding off on introducing solid-foods until at least 6 months
– Avoiding antibiotics for breastfeeding mom and baby except in life-or-death situations
– Avoiding any environmental risks like lead paint, home construction, cleaners and solvents, chemicals, etc.
– Supplementing baby with infant-safe probiotics
– Avoiding all vaccines for at least the first 2 years of life, and then taking extraordinary caution
– At the right time (typically 6 months or older), adding proper methylation cycle support
– At the right time, proper supplementation of Omega3-6-9
– Providing natural detoxification through things like Epsom salt baths

So mum has to go through an extremely rigorous program. What does dad have to do?

Nothing. Nada. Zip. Fuck all.

Children are, it seems, conceived solely by the female and thus the male’s biology plays no part. Or maybe JB just couldn’t stomach the thought that men’s sperm might play a role.

OK now, back on real street, lets look at a few things.

Firstly, this child is a third born female. Sibling risk of recurrence for autism with the previous birth of any child with autism is thought to be about 4.5% (the numbers are higher for families with a firstborn female with autism or more than one child with autism). That’s right, about 4.5%. That means that there is an approximately 95.5% chance, based on the available science, that a third child born into a family with one autistic child who is not a firstborn male, will not be autistic. Let’s say that again – a 95.5 % chance for non-autistic (maybe even higher if the child is female). From a purely statistical perspective, that’s a very high probability for a non-autistic child. (Source).

If this daughter _doesn’t_ end up being autistic, what do you think is more likely to be the reason? The +95% chance it wouldn’t have happened anyway? Or JB’s course of mummy purification?

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