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Seems a pity that, on seeing the words “top 10 unfounded health scares,” the first thing I thought about was……….vaccines and autism.
Many speak of a “debate” about an alleged vaccine-autism link and that there’s a “controversy” brewing here, but it’s a false controversy. 2008 saw the publication of more studies refuting a link, and yet there’s been a call for more studies—-among the $1 billion in research initiatives noted in the Strategic Plan of the IACC is an item about the “different health outcomes in vaccinated, unvaccinated and alternatively-vaccinated groups”—so it’s not as if this particular topic is going to go away.
Sometimes, one starts to wonder, will this particular topic ever go away? How many studies will it take to convince those who believe so very much that there is a link, that there really isn’t one?
Of the 3,393 or so posts I’ve written here, hundreds and hundreds and hundreds have been on vaccines. In the course of writing those posts, and reading about vaccines, about autism, about vaccines and autism, and about what people think about vaccines and autism and about why people think there’s a connection between their child becoming autistic and vaccines, the one thing I’ve mostly been left with is a sense of need—-a sense of needing to know—-of searching for the one answer about why and how this happened—-of needing to do the right thing. In an age when every single step of child rearing, from pre-conception to pregnancy, from labor to birth, from infancy to the first birthday to toddlerhood, from preschool to elementary school to hitting the double digits (10 years old!) to (gasp) adolescence, is not only scrutinized—-is written about in books, magazines, and websites galore, parents seem more and more haunted by the need to get it right.
And when one’s child is disabled, that need seems only to get compounded, as parents (myself included) seek “the best,” or the “most appropriate,” or the “highest quality” services, teachers, therapists, and programs for their child. As much as you know—as I know—that you and I did everything we should and could have done for our child, still that worry nags and lingers, that maybe you and I could have done something different. On the one hand, I’ve gotten pretty good at ignoring stares from strangers; on the other hand, there’s always an unspoken fear that maybe I am doing something wrong; that I’m a bad parent. Why else did those “autism is just another excuse for rotten parenting of rotten kids” remarks by Michael Savage and Denis Leary earlier this year strike such a note earlier this year?
What if we really are such bad parents; what if the likes of Savage and Leary are right?
And it’s that voice-in-the-back-one one’s mind, it’s that twinge, that “maybe” that has something to do with why, scientific evidence to the contrary, the notion that vaccines are somehow linked to autism just won’t die.
So here’s a possible resolution for the new year: How can we detox ourselves from talking about the hypothetical vaccine-autism “link”?
I’m sorry, one more thing. I would appreciate it if you would re-name your blog. Your title suggests that you are speaking up for people with autism, when that has nothing to do with why you write.
@Storkdok,
The need for medical intervention in autism is there. You could outlaw DAN and other such organizations under penalty of death and the practices would still exist. The need is there and it is a desperate for a large number of parents.
If you want to fight DAN then find a working medical alternative. That and nothing else will shut DAN down. There are medical differences between autistics and the rest of the population. Learn how to exploit them.
@CS
You hit the nail on the head. I and many other physician bloggers are working on the AMA and AAP and CDC and FDA to take the lead in fighting pseudoscience. They have been very weak since they were sued by the quack organizations, even though science prevailed, they seem scared because they may face another lawsuit.
My personal goal in 2009 is to lobby these organizations to take the lead and advocate for evidence-based science practices. I also am working on some projects in my state, along with our developmental pediatricians and our Maine CDC for education that is evidence based. I also am working on removing the CME for physicians who attend DAN! conferences.
CS Wyatt
I understand and good luck to you.
@Ed
Most scientists and researchers I know have no time or energy to fight for changes to IRB protocols. You would need to change a system that is so vast, so regulated and worried about lawsuits, that it would take decades.
Heck, even people in the humanities and social sciences conduct research at the whim of IRB approvals. Any research, even of historical data, involving humans has to go through the IRB process at a university. It takes about two to three months to get a reply to the “intent to study” at some institutions, though others are faster. (I waited six months for my last approval — which merely meant I could submit my actual survey for IRB approval in round two… another two month process.)
Honestly, you study what interests you and what you can get quickly approved. For doctoral students, graduate fellows, and post-docs, time is very limited. If you know you have a post for two to four years, you cannot suggest a study that will take more than a few months. The approval process will eat one year, the data collection another year or two, followed by writing the various papers.
As I’ve said, you’ll be hard pressed to find researchers — especially when most of us need external grants and funding just to survive. My “salary” is grant money. It means I have to do research someone is willing to support and endorse. In my case, a college within the university approves everything I do, so I’m not directly aware of funding sources. They do that to protect objectivity. However, what gets funded is almost as important as by whom it is funded.
My research field — language acquisition (written), education, and autism — is receiving less and less funding. I’m sure most fields are struggling. As a result, I tailor my research to things I know will sound great to the widest possible audience (meaning as minimally controversial as possible). Few people are going to criticize research involving technology and special education.
Summary: I need to survive. I need money to pay bills. In 2010, I need to find another job, ideally as a tenure track professor. As a professor, it will be “Publish of Perish.” That’s also why I’m slipping back towards writing and general rhetoric… “writing programs” are the latest trend on campuses (writing across the curriculum, writing studies, first-year writing, and so on).
One does have to survive within a system. Plus, six or seven years dealing with IRBs and research, I’d rather write short stories and poetry. Creative non-fiction doesn’t require lots of paperwork and IRB committees.
@CS
To say you are more active was no assumption, nor is it in any way an insult. I have found several links / debates involving “CS” that started on this forum. Being active is certainly admirable… I just lack such energy, now.
C.S. Wyatt,
I did confuse you with CS and I apologize.
You provide good insight on what it takes to gather data and I appreciate it.
I am not surprised that the IRBs are paranoid. Everything you tell me says that if any such survey were to be proposed it would get squashed like a bug based on the idea that parents cannot be frightened away from vaccines. I hope I am misreading it.
With the autism ratio of 1/160, the sample size necessarily must be large. A pilot program with 250 in each group hardly seems adequate. With the required sample size being so high I am not surprised to hear you say that most studies on autism are too small for generalization.
On the other hand, the ratio of vaccinated to unvaccinated is also very large. Statistics on the general population are ubiquitous and because the vast majority of the general population are vaccinated. What is not available are statistics on the unvaccinated population. I would start the pilot program with the unvaccinated population. But such a survey would throw the IRB into a fit and I expect that it will never happen.
Right now, the pundits throw out studies on the MMR, on thimerosal, on how thimerosal disappears in the bloodstream after three days and make the claim that these logically prove that there is no relationship between autism and vaccines. It does not logically follow. If you want to know if vaccines are related to autism, you must have a control group. I know it is a lot of work, but I do not believe I am being cavalier in calling for it.
C.S. Wyatt, you can clarify who you are without making assumptions about other people.
In actuality, a study to compare populations of vaccinated / unvaccinated would also need a massive (and I do mean massive) data source. You would need, roughly speaking, 1000 or more people in each group to extrapolate the findings — otherwise a pilot study could be valid with 150 to 200 in each group.
You would need information on the parents, genetic screening data, dietary information, tons of socioeconomic data, and much more. I would want to know every single variable I could, in case there are other parallels. For example, what if more of the non-vacc parents were also organic shoppers? I wouldn’t be surprised, since many non-vaccinated children are from well-educated, upper/upmid-class families.
You’d have to do an analysis to see if any variables match the correlation, indicating you would need yet more studies. Again, we know the better educated the family, the greater the chances of an AS / PDD-NOS diagnosis. (As if the poor never have Aspergers?) That’s simply because of awareness and willingness to have a child evaluated, I theorize — but I could be wrong. AS was once called the “Silicon Valley Autism” by ComputerWorld. Why? Because so many programmers / developers have the diagnosis or have self-diagnosed. From this, we certainly wouldn’t conclude that parents with high-tech careers have more autistic children, but statistically that would be true of the diagnostic rate in California (if you map the cases reported to OSEP).
So, to control for vacc/non-vacc, you need individuals from nearly identical social, geographical, and economic backgrounds. This gets very complex and might require years to develop a valid model for such a survey. Then, you still need to sell the survey to at least on IRB at a university or public research center.
Legally, I checked our IRB forms and I cannot conduct even a survey of minors or their parents without the survey being checked by the psychology member of the board. This is because some questions can raise “damaging fears” among parents and children. You must always provide “informed consent” forms that explain you are legally obligated to intervene in matters of child welfare.
Now, if I’m a parent and someone reads the IC forms from the University of Minnesota to me, I’d be really worried. It could be a study of homework habits, but the IC form still sounds like one of the drug warnings on television: “In rare cases, people die during studies.”
I have challenged the IRB to do studies of how children and adults with autism use the Internet. The last study was deemed “potentially harmful” until I revised the methodology twice. (I wanted participants to maintain written or offline journals of activities and how they felt during the activities.)
Honestly, IRBs are paranoid. There are historical reasons for the paranoia. Now, just as a teacher has to report abuse, a researcher has to act “in loci parentis” (sp?) during studies. That does make matters complicated. I must always consider the welfare of a child (anyone under 18), even if an entire study is ruined by some action I must take. (Example: Years ago, I had a student write about abuse. I had to report the writing to child welfare. Data were lost, study changed… life goes on.)
I just don’t think people should toss out “We need a study of…” so casually. Studies are expensive, time-consuming, and highly-regulated. Most are never completed, at least at R1 universities — and those failures are still important experiences. We revise the methodologies and try again.
I do know most studies published on autism use samples that are much too small for generalization. I think the samples probably start much larger and for a variety of reasons members of the population are excluded from final data. I know my IRB and department want at least 25 members of comparative populations for a simple pilot study.
As I said, just sharing my own experiences. For almost four years I’ve worked on one project and can attest that the process is slow. Very slow. If you want to follow children? You’re talking about years of monitoring, tracking everything because you can never, never trust parental surveys alone. You’d need every medical, school, and mental health record over at least five or six years.
When someone does get IRB approval, I’m sure it will be a grueling six years, plus at least two for writing, editing, and then peer-review publishing. What’s eight years?
And no, you cannot rely on surveys or data collection “post-experiential” for such a study. Too much might be forgotten or omitted. You need real-time monitoring.
I know I have things I’d rather do with my life. But, maybe the MIND Institute is up for getting this past the NIH someday. Eight years of steady work might be appealing to some statisticians.
One thing to make very, very clear. I am not CS, but Ed’s posts seem to confuse me (C. S. Wyatt) with the poster (CS) at times. I never — never — fail to sign my name and I try to remember to link to at least one of my Web sites.
I am a current doctoral fellow. My life is in research for at least one to two more years, before I return to my main passion and interest: creative writing / literature. Honestly, I plan to leave much of the “autism debates” to other people with more energy.
Ideally, I might spend time working with students “on the spectrum” with an interest in creative expression. Beyond that, I’ve stated before that I’m no where as driven as the “other CS” to engage in debates.
Just trying to clarify matters…
@CS
Shown in the school records not medical records
@CS,
As I said in the previous post, I cannot prove that what happened to address leaky gut was what changed my son. But you already know that.
When I worked with David my objective was to find a way to help him, not to do a case study. What is available are the school records where you can see a boy who in second grade lost prodigious math skills to where he could not add past 5 without counting on his fingers. You would see a kid who took a typing class and at the end could not type at all. You would see a boy on Ritalin and later Adderall because he simply could not focus. You would see that the Ritalin and Adderall had limited success. You would see at the beginning of May in seventh grade a change was observed. You would see that he was doing better and that Ritalin and Adderall were dropped. You would see an autistic who kept getting better after puberty. The behaviorists will agree that “after puberty” is not the way it works. You would see the same one who had lost all of his math skills has passed Calculus I, II and III and Physics with Calculus.
This much can be shown (not proven) in the medical records. I want you to know that I reject your idea that there is nothing that can be done medically and that I have personal reasons for that rejection. I understand the rigor that researchers must go through. I can offer you no such rigor because that was not my purpose back then.
On your side, you can logically neither accept nor reject my assertion that my son was changed medically. What I ask from you is to understand that I was there I saw what happened and I believe that my son was changed medically. I ask that you understand that this personal experience is part of the reason that I reject your assertion that nothing can or should be done medically for autistic children.
Ed, prove what you wrote.
@CS,
If you want to help, walk the halls of your state legislature and lobby for bills that will improve inclusion, opportunity, education, acceptance and independence through services and support. Promoting any other cause is a waste of time and a distraction.
In the seventh grade, I was spending two hours every night getting him through his special education homework. Then we took an alternative approach to addressing the possibility of “leaky gut”. It was not the GF-CF diet. In two weeks, he was doing his homework by himself. My son now drives, and he attends college where he is studying engineering. I understand that in a sample of one what we did to address leaky gut may not have been responsible for the change. But to say that what we did could not have had anything to do with it makes an equally grave and common mistake.
I reject your assertion that there is nothing that can or should be done to find out what is going on medically and what can be done medically. And if you are unwilling to move from this assertion, we will just have to agree to disagree.
@CS
In some ways you are right. I do not accept the qualified opinions because my experience has been that the experts have started with the conclusion and set out to prove it. You personally brought evidence to the table to that effect when you brought up the MMR study and generalized it to all vaccines. Yours is only one of many I have seen. If you want another, just go to the CDC autism site where the Syracuse University study is cited. It found that mercury disappears from the blood stream within three days, (Good data) and concludes that mercury is safe (Does not follow).
I know enough about statistics to know that the experiment to determine if there is a relationship between autism and vaccines is to measure the autism rate of the vaccinated against its control group, the unvaccinated. That experiment has never been done. That experiment is proper and I do not think that I am being obstinate in calling for it.
“how it occurs are discoveries that will make the lives of our children better. ”
If you want to help, walk the halls of your state legislature and lobby for bills that will improve inclusion, opportunity, education, acceptance and independence through services and support. Promoting any other cause is a waste of time and a distraction.
@Storkdok,
I want to thank you for the point you made being essentially this: Autism is not curable and we should not waste time on trying to find a cure.
But I must disagree, not with the first part because I do not know if autism is curable. I only know that medical research on autism is not a waste of time. Even if the journey to the autism cure is an infinite one, along the way to learning what autism is and how it occurs are discoveries that will make the lives of our children better.
Today, you seek the help of ABA, of educational institutions, of behavioral therapy for your son. And you should. These will take your son as far as he is capable of going. While I have always accepted my son as he is, I do not accept the idea that the limits placed on him by his autism cannot be transcended. The key to that transcendance is medical.
I reject the psychiatric viewpoint that person A is normal and person B is psychotic, or manic depressive or autistic because of trauma induced by whatever. That is the root of the Bettleheim theory of refridgerator moms. There are real medical reasons for all of them. Lead and mercury are reasonable explanations for at least some of these issues. Psychiatric trauma is not. Freud was a fraud and it is time that the educational community expunged him from all but historical footnotes.
I further reject the Freudian trauma ideas because it gives the idea that there is no medical difference between a normal people and people with psychosis, depression or autism. That is giving up before starting.
Storkdoc
Ed’s last post is exactly why your argument, though very reasonable and something I agree with, falls flat on its face with folks like Ed above. He’s looking at stuff from chiropractors and so forth who know nothing about autism. He’s not persuaded by qualified opinions. He’s looking for any bit of information that supports his beliefs, sort of like the UFO guys did last night on Larry King. As a matter of fact, the psychology of this crowd is very much like the autism quackery crowd.
The best thing to do, if everyone would do it, is to turn your head, get the AMA and AAP to do their jobs rather than parents to do it for them. Those two orgs. share in the responsibility for the quackery in my opinion because they are weak advocates. In the end, autistics suffer because everyone is spending energy on debating with stupid people.
@CS,
The study I mentioned is here.
http://www.cranialsubluxations.com/medical_research/increase_in_head_size_may_predict_autism.htm
@CS,
On why the studies can’t be done
At this time, two percent of the population in the US do not vaccinate their children because the parents refuse to do so. There is no moral dilema in surveying those children for their autism rates.
Nevertheless, my observations are that the research community is every bit as protective of the vaccine program as they are protective of children. My second observation is that when research is started with the conclusion, it is easy to find the evidence necessary to get a not guilty conviction.
My third observation is that when mistakes are made, if the study supports the idea that autism and vaccines are unrelated then they are not caught. That could be related to the distinct lack of studies that might contradict this idea. You just provided an example of a study where a population was excluded from the MMR vaccine and still had cases of autism, concluding that autism and vaccines are not related.
The autism-vaccine debate has reached religious proportions. If it were proven that autism and vaccines are related then there would be those who will still say that they are not related as an article of faith. If it were proven that autism and vaccines are not related then there would be those who will still say that they are related as an article of faith. This is what the acrimony has brought us to. Research has to start with a solid base. Experiments done with a foregone conclusion on both sides have weakened that base. This is why I am calling for this experiment to be done.
The bottom line is that such a study should be done and likely will never be funded.