The Great Now What
November 2, 2008 by Kristina Chew, PhD
Filed under Health
Vaccines don’t cause autism and yet a connection between the two seems to have become deeply lodged in the public consciousness. Some believe in a vaccine-autism link with something akin to religious faith, or fervor, to the point that, no matter how often one cites scientific studies refuting, such a link, some are not, will never be, convinced. Some say that parents should have the right to choose to vaccinate or not; meanwhile, measles has been on the rise this year with some 131 cases so far reported, This focus on vaccines has come to preoccupy discussions about autism, over and above the very real concerns of appropriate schools and educational programs, and housing and jobs for adults.
The excessive attention given to a hypothetical vaccine-autism link keeps discussion about autism centered on children, and on young children and infants. It’s the schedule of vaccines a child receives in his or her first 18 months that are especially under scrutiny, and it’s autism in children that most public discussion tends to be about—-but what about older children, and about autistic adults?
This past week I talked to two mothers of older children—-one’s mother son is in his 20s, the other mother’s son is in his 50s. “Your son’s very young,” the mother of the 50-something child said to me and did I feel relieved. So often over the past few years and certainly since Charlie’s grown so tall, the word has been “he’s getting older” and “he’s not so young anymore.”
Charlie, as noted regularly here, is 11 1/2 years old—-certainly no longer a little preschooler who might, or might not, be able to enter kindergarten with same-aged peers. On the other hand, as those other moms pointed out, he’s just at the start of his life and so much still lies ahead.
The years between birth to 5 and 2 to 5 are often referred to as a time that there’s a sort of “window of opportunity” to do as much as one can—intensive ABA, biomedical treatments even like the experimental, and potentially dangerous, chelation. The message delivered to parents is that, if you don’t hurry hurry hurry and do everything, do all, you can now, you’ll lose that precious window and it’ll all be nevers: A child will never be able to lead a normal life, go to school without special ed, go to the prom, go to college, get married. Take care of themselves. The result is that parents—-as we did when Charlie was younger—-throw themselves headfirst into every possible therapy they can try, and many dollars are spent in the process, and many hopes rise and fall.
An article in The Gazette about 4-year-old Peyton Thorpe. His father is Noel Thorpe, the special-teams coordinator and defensive-backs coach for the Edmonton Eskimos; Peyton was diagnosed at 2 years old with autism and currently does in-home therapy five days a week and attends an integrated preschool four days a week. He is not talking yet.
I remember and still feel what it was like that have that “sense of urgency” to do everything we could before Charlie turned 5, as if kindergarten were some sort of magic goal—a finish line to normality. But far from 5 being some magical age that “everything” must be accomplished by, Charlie’s has kept on learning at 6, 7, 8, and onward. What hasn’t kept apace with his getting older is people—-school administrators, autism consultants of various sorts, his own parents—-knowing what to do, as far as programs, teaching methods, training for staff, transitioning Charlie from each stage. Though parents of just-diagnosed children often feel so confused and uncertain, Early Intervention and preschool services and programs are (here in New Jersey, at least) in place. After that, it always seems to be “the great now what” all over again.
But the fact that we have a sense of how to help young autistic children and are slowly finding our way to teach older children, suggests that we maybe kind of have a better sense of what to do. (Maybe….) The mother in her 80s said to me that, compared to what was available for her son when he was Charlie’s age and younger—-nothing—–everything we’ve gotten has been served up on a silver platter. “And I’m glad it has,” she added. Now the work, or the work I know I have to do, is to figure out how the things Charlie’ll need—a job, a place to live, a way to be among the community—can be put in place and can work.
Returning to Noel Thorpe in The Gazette:
Thorpe doesn’t know what the future holds, but understands there will be challenges and obstacles ahead; hurdles he seems willing to tackle head-on.
“I can’t imagine [Peyton] not speaking. That’s a goal,” he said. “But let’s be honest. If he doesn’t, I won’t love him any less. It’s about the connection between two people. There doesn’t have to be words.”
The mother of the 50-something year old young man told me that her son was 10 when he started to talk. Over time, much can happen, and I want (I need) to savor every moment of our time with Charlie. Yes, childhood’s not forever—that’s why there’s no need to rush it, or to speculate endlessly about theories of what might cause autism.
I like how definite you are about the lack of a causal lik between vaccine and autism, – despite the absence of any reputable independent evidence to support your view. May I point you to the following reference which supplies evidence which is contrary to your view.
Young HA, Geier DA, Geier MR. Thimerosal exposure in infants and neurodevelopmental disorders: An assessment of computerized medical records in the Vaccine Safety Datalink. J Neurol Sci. 2008 May 14. [Epub ahead of print] Article available at:
It’s refreshing to see the blog “Autism Vox” isn’t some psychotic Jenny McCarthy-esque curebie nonsense.
Thanks for writing this.
We actually had a pretty good experience with in-home therapy and wouldn’t have done it otherwise. It wasn’t what most people think, or experience, I think. It’s over now. What now?
Piano lessons and bike riding, maybe. School work.
Reading.
I live in an area that is full of hyper hippy parents who are anti-vaccine and it’s a little infuriating to say the least. Thanks for making your voice heard.
The real problem is that most people fail to realise that human development is not a linear process, and that during early development a variety of systems are developing at different rates and interacting with each other. Some processes appear to develop and then become submergered only to emerge again later.
Regression is not something that starts at a particular age, it emerges at a particular age from conditions that were probably set much earlier.
There are many examples of competent adults who have had this particular trajectory of development, one could if one modelled it see it as an inevitable and necessary stage given the conditions for that individual.
What is not known however, is how one can tell during the stages of regression what trajectory the individual is on, and when and if speech will re-emerge.
It is quite concievable that for some no intervention is necessary at all, we just do not know, what is likely however is that there are some interventions which will only cement the process and hinder “recovery” or as I would prefer to term it progression.
BTW the Geiers are not a lot of things, they are not developmental psychologists, and I doubt they could even pass an elementary exam in that subject which required a broad frame of reference beyond there narrow and imperfect gaze.
This would seem to imply that you will point to a reference that supplies reputable independent evidence in support of causation.
A. Young, Geier, and Geier claims association, not causation.
B. Independent? From the paper itself:
Hi Kristina –
You might be interested in knowing that we have evidence that children with autism will react differently to a vaccine (or any immune stimulus) than children without autism. I would recommend anyone interested read “Macrophage migration inhibitory factor and autism spectrum disorders”, recently published in Pediatrics. [Would you mind posting a link to it? Everytime I try to link, the spam filter catches up with me]
In any case, of particular interest here is that children with autism have been found to harbor polymorphisms known to be responsible for the creation of a substance, macrophage inhibitory factor (MIF), which is known to upregulate toll like receptors. These relatively recently discovered components of our immune system are the starting point for initiating the innate immune response. These toll like receptors are the reason aluminum based adjuvants are added to vaccines, the aluminum acts to stimulate the immune response in the presence of bacterial antigens; this is why we can give children a tiny dose of bacterial or viral proteins and have the body generate an immunological memory. Without interacting with the toll like receptors, our modern vaccines would have no effect. When they do have an effect, the result is generation of immune system cytokines that help the body fight infection via inflammation. Not unsurprizingly, we have repeated studies showing that the very same cytokines generated as a result of immune stimulation are abnormal in autism; they tend to be heavy pro-inflammatory cytokines and reduced in the corresponding anti inflammatory substances.
Now, it just so happens that children with autism have more a substance (MIF) that is known to upregulate the function of these toll like receptors. Curiously enough, the amount of MIF circulating in the bloodstream also happens to correlate positively with autism severity; as you have more MIF (and increased effect on toll like receptors), your autism severity also increases.
Any studies involving vaccines with thimerosal or without would be completely blind to this assocation; both vaccines interacted with toll like receptors. Likewise, studies of a single vaccine (i.e., MMR), involves analyzing a single stimulation in an array of dozens.
Increased levels of MIF have also been found to be associated with other inflammatory and/or auto immune disorders that have experienced similar unexplained increases at the same time as autism, such as childhood asthma, juvenile arthitis, and type 1 diabetes. One thing we can have relative certainty of, the numbers of children harboring promoting polymorphisms has not increased substantially in the past three decades.
We know that children with autism are more likely to have critical components of their immune system over expressed; the very components that are the heart and soul of modern vaccination. We know that as this over expression increases, so does autism severity. We know that this relationship is invisible to the vast majority of the existing studies.
Consistently saying that the existing body of research on vaccines and autism is comprehensive does not make it so; no matter how many times we repeat the mantra, or how hard we would like to believe it.
- pD
Kristina–Your website has lots of good information within, and I’ve explored the links often. I must, however, take some exception with regard to the nearly daily references expressing your confident doubt of any link to vaccines and autism. I saw your brief appearance in the Today Show segment, and one of the only reasons they so frequently air anti-vaccine pieces is because they need to give Nancy Snyderman a forum for her views. I know that sounds mean and presumptuous, but it’s far meaner to somehow imply that children who are not vaccinated might actually be directly responsible for the increase in measles. That’s the inference many people will make from your comments in the absence of any hard core information. I am more disturbed by some of the replies using words such as “psychotic” and “hyper-hippy” in reference to people who are not with the program. Jenny McCarthy is what she is, and to be honest I do not think anyone has really been influenced by her book beyond the “star” aspect of it all. My wife and I are not hippies, or psychotic, and our son, not vaccinated since he was 3, is one of the healthiest human beings I’ve ever seen. He has a great diet (having navigated through what foods do and do not affect his gut) and gets plenty of exercise. He is non-verbal and admittedly we are no more certain of a specific direct course of action to take than we were when he was 5 (he is nearly 17). But we do know that his learning happens in (as was suggested) a non-linear way. We keep changing with him, trying to keep things interesting. We know he is more unable to talk (some kind of physical impediment) than he can’t, or doesn’t want to. We make sure he has lines of communication, and keep a close watch on his changes. That’s all anyone can do. As parents, each of us has to do what is right, as we see it. For those who vaccinate, I guess you have nothing to fear from those who haven’t, am I correct? No need to pay any attention to pressure from anti-vaccine parents. Do as you must. For those who do not, you have a right to more answers. I still haven’t seen anyone explore the immune systems of kids at birth to see what degree of protection they may already have from their mother’s immune system. Is this even possible to investigate? Perhaps vaccines push certain kids over the edge, while others have no reaction.
Sorry for the run-on paragraph, but isn’t there enough polarization in the world? We so easily fall into areas of belief that are already safe for us. It makes us feel more sure of what we’re doing and that we’ve done enough, and perhaps we really have. But let’s please avoid the name calling and stereotyping, as I hope I have.
This such a controversial issue that’s it is hard to really get to the “truth”. While people get very emotional -for good reason…I wish the dialogue was less polarizing. I will keep monitoring this so that I can provide good information on http://www.keyinformationnautism.com
The discussion about this topic has become so polarized that there’s a need to jump right into the conflict and understand why the polarization has occurred. First and foremost, there needs to be acknowledgement that the vaccine-autism hypothesis has taken up, and is taking up, too much of public discussion about autism. At the end of the day, we all share more than we are divided, but we can’t just overlook the very deep-running feelings and time that people have poured into this issue.
One truth is that people do want to know the cause for autism; another is that we need and want to help kids learn and grow, and pour more energy into concerns about school and education.
@pD, here’s the link. — But do all autistic children then have different reactions to a vaccine (or any immune stimulus)?
@Hilary, I’m originally from northern California—-Berkeley and Oakland—and still know may a “hyper hippy parent”—–nothing beats a little learning, whether to read or bike ride or play the piano!
Kristina–I am from NYC originally, and have lived in the SF Bay Area (and currently Santa Cruz County) for the last 22 years. You haven’t met a hyper-hippy until you’ve been to Santa Cruz.
Seriously, though, autism research, or lack of it, suffered for so long with nearly total reliance on anecdotal information, that when something relative to hardcore science came out, we were all hoping it would give us an answer, maybe even The Answer. When it just provided us with another puzzle piece, but not the puzzle into which it might fit, people felt compelled to place blame either way. I agree that it takes up a disproportionate amount of time in the big picture discussion. It gets more attention, though, due to it being an area of Public Health that directly, potentially, affects everyone’s kids. It’s not like debating gluten free diets, or Vitamin B6, or some educational method. No one wants to be blamed for an outbreak of something. Maybe this is something that needs to be shelved. I think parents should make their decisions, knowing the potential consequences, without us passing judgment on each other.
I’m really sorry I missed out on the discussion with Dr. Offit over at the Science Book Club Blog.But reading the comments over there,led me to the Chelatingkids2 Yahoo! group,which now requires registration to read,BTW.This,in turn led me to a number of other discussion groups,and message boards,that these people operate.
I don’t think most people realize the extent of the zealotry,and yes,madness the “mercury moms” exhibit.This would include families of seriously autistic children.I don’t know if anybody has put forth the notion,that if these kids are autistic.it’s because the parents because the parents have either Asperger’s, Obsessive Compulsive Personality Disorder, and/or mild schizophrenia. Not because of any vaccines.
These people use a lot of buzzwords.One of these,is “biomedical”.When I first came across this,I naively thought it had to do with treatment for autistics, like me,who also happened to have comorbid neurological,and especially systemic autoimmune diseases.Boy was I mistaken.How common is this anyway?Are there a lot of kids with autism,that also have diseases like juvenile arthritis,or lupus ?I have never seen anything about this specifically.More studies that could not be done,because research dollars were going into disproving this vaccine garbage.
I am convinced there are immune triggers for autism,especially,if,as I did,you have a severe brain infection,in the first 18 months of life.I have had a number of bouts of acute bacterial meningitis.The first of these was when I was 5-8 months old,and spent two months in the hospital.
Has anybody looked into just how many of these allegedly vaccine damaged children,are enduring this horrendous treatment,just for mild Asperger’s ?
Hi Kristina –
But do all autistic children then have different reactions to a vaccine (or any immune stimulus)?
Likely not; but we all understand that autism is a very heterogeneous set of behaviors and physiological symptoms. If you have increased MIF, then yes, and we do know that having MIF promoter polymorphisms is associated with an autism diagnosis.
If we were to for some reason only focus on things that were common to everyone with autism, we wouldn’t have very much to focus on at all. Our imprecise ability to classify autism and resultant mish mash of a spectrum has caused this; continuing to treat all autism as the same is a black hole.
There is a paper involving stimulation of toll like receptors with agonists and several phenotypes of autism. What was observed is that children who had sufferered recurrent ear aches, and had been observed to regress following infection displayed abnormal ctyokine responses. To my mind, this is unsurprizing.
Evaluation of atopy and immune functions in children with autism spectrum disorders (ASD): Identification of an ASD subset with distinct clinical and immunological findings
Not linking due to spam filter concerns.
- pD
Jerry,
Thank you for your post on Macrophage Inhibitory Factor.I did not realize there was a connection to autism,but here it is : http://pediatrics.aappublications.org/cgi/content/abstract/122/2/e438?rss=1 This appears to be a very recent finding.
For me this is very applicable,and explains a lot.I have a form of autism,that basically is what someone with classical Kanner autism would be like if they were verbal.In addition to the (autoimmune?) meningitis,I have rheumatic heart disease,and arthritis,inflammatory bowel disease (my mother and sister have this too) ,recurring labyrinthitis,and a past history of Children’s Interstitial Lung Disease.
It also explains why those with Asperger’s do not have such conditions.I have been soundly ridiculed in the past,at message boards,like Wrong Planet,and Aspies For Freedom,when I have suggested that:
1)Based on my own experiences,there is obviously a connection between autism,and systemic autoimmune diseases.
2)This is a big part of autism,and yet another reason,why autism is nothing to celebrate.
The neurodiversity/autism pride movement,is run by “aspies”,and not by parents of severely autistic children.And many of these are self diagnosed.Their picture of autism is a one sided one,based entirely on themselves,and those like them.
This is BIIIG news!!! I can’t believeit wasn’t blasted all over the news when it came out.
Is there a blood test for levels of Macrophage Inhibitory Factor ?
@Roger, thanks for posting the link—-meant to; here’s the abstract:
@Jerry, my grandfather owned a place in Santa Cruz once upon a time……..
Hi Roger –
I’ve seen some animal based research indicating that anti MIF substances were quite effective at amelioriating the progression of inflammatory or auto immune disorders. In particular, I saw one wherein researchers were able to keep animals from getting type 1 diabetes through interfering with MIF. [The animals were also dosed with a chemical known to cause type 1 diabetes, and compared to a control group who got nothing to interfere with MIF]
I couldn’t find much showing if such therapies had been tried on humans yet; though the promise of such therapies is mentioned in several abstracts I read.
- pD
@Jerry,
I’d be glad to let the vaccine issue to rest and never mention it again. But it goes deeper than just about one particular hypothesis of autism causation. It goes into how we view autism, how we understand it—-as an “accident” that “happened”; as something that might, that is, indeed genetic, whether hereditary or de novo. I never intended to discuss the topic publicly, and then I started to see how entwined the vaccine theory is with a certain way of thinking about autism.
Thanks (and to everyone) for hard questions and provocative commentary. Keep it coming.