The Truth Is Out There, But Smallpox?
July 31, 2008 by Kristina Chew, PhD
Filed under Health
The truth, as Mulder and Scully would put it, is out there. I’ll confess to never having watched The X-Files—we did have a TV then (Charlie, and I, had to watch all those videos of Barney, the Teletubbies, and the Wiggles on something)—but the years The X-Files were on (1993-2002) overlapped with the years in which I was writing my dissertation, getting married, getting my first teaching job, and having Charlie, who was diagnosed with autism in 1999.
In those years, I wasn’t thinking too much about truth; I was just trying to figure out how to help Charlie learn to talk and sit at a desk so he could, we so hoped, go to school. Talk of treatments and causes swirled around me and while we found out as much as we could about what we might do for Charlie—especially if it involved his education and learning—-we briefly considered each theory of what causes autism, and shrugged it aside. Charlie’s development had been just a bit unusual from the start; Jim and I both had a sense of what families members “had”; if autism was indeed genetic, so be it. We heard about the vaccine theory; we thought about Charlie; we’d never seen the sorts of dramatic changes—-complete regressions—-that other parents swore by.
I was always struck by one detail in particular in these parent accounts of a vaccine “causing” their child to “become autistic.” Many of the accounts emphasized that, “one day” a child was fine—normal—and then he or she had a shot or shots and the next day, overnight, the child had autism. The “onset” of autism was, accordingly, often linked to a child receiving a vaccine, and was indeed said to be “caused” by the vaccine. Chronology has been given a big role in the theory about vaccines or something in vaccines somehow leading to autism: In the Autism Omnibus “vaccine court” hearing last year for then 12-year-old Michelle Cedillo, videotapes showed that she had already been showing signs of delayed and/or unusual development prior to receiving her vaccines. [A transcript from the most recent Autism Omnibus trial can be read here.]
While more and more scientific studies dispute that vaccines or something in them (such as mercury) “cause” autism, discussion—-or rather debate or diatribe, depending on what website or publication you’re reading—–continues apace. Journalist Dan Olmsted used to regularly theorize about links to vaccines and autism in his Age of Autism series, and not just about the MMR vaccine or thimerosal. Olmsted’s belief, as stated in a July 29th Age of Autism post, is that “autism is triggered by the commercialization of ethyl mercury in vaccines and fungicides in the 1930s.” And Olmsted indeed leaves no report of any vaccine in the history of an autistic child uncommented upon.
In the July 29th Age of Autism post, Olmsted’s concern is the smallpox shot. More specifically, his concern is what he says is an “unright fact”—a “mistake,” a “screw-up”—-in a reference to the smallpox shot in Unstrange Minds: Remapping the World of Autism (2007) by anthropologist Roy Richard Grinker. This is what Olmsted writes:
I pointed out that Grinker had messed up the math in a reference to Case 3: Richard M., in Leo Kanner’s landmark 1943 paper on autism. At about age one, Richard got a smallpox shot that was followed by a fever and illness that lasted a week, and later his mother told Kanner she recalled him losing skills he had started to develop. If you carefully track the chronology contained within that case study, you realize this regression started about the time of the smallpox shot and subsequent reaction. But Grinker gets the chronology wrong — he puts the smallpox shot at age TWO, not age one. At that later age, the shot obviously could have had nothing to do with the regression at age one.
To my mind, this association between shot, illness and autistic regression in Case 3 is not a minor matter — it is a clue, a warning from the very beginning of the Age of Autism. But Grinker misreads his way right past it. Here’s what Grinker writes: Richard “showed signs of normal cognitive development — or at least this is what the parents retrospectively argued — until he was about two. Then, as his mother wrote to Kanner, ‘It seems that he has gone backward mentally gradually …”
No, not at age two. At age one. When he got the shot and got sick. And regressed. Wrong again.
Yes, something is wrong: Olmsted says that a child named “Richard” got a smallpox shot and then afterwards regressed, and that Grinker gets this “wrong” in his book. “Richard,” says Olmsted, would have gotten the shot at age one, rather than at age two: “Grinker gets the chronology wrong — he puts the smallpox shot at age TWO, not age one.”
Grinker doesn’t get it wrong. He doesn’t mention the smallpox shot at all in the passage that Olmsted cites (in chapter 2 of Unstrange Minds, “Theme and Variation: The ‘Discovery’ of Autism). In fact, Grinker does not mention smallpox in the whole of chapter 2; in all of Unstrange Minds, smallpox is only mentioned in chapter 7, “Autism by the Numbers,” once in the context of late eighteenth century anti-vaccine movements (p. 144) and in reference to the word “epidemic” (p. 147). Olmsted has vaccines, and smallpox in particular, on his mind, and, it seems, sees “smallpox” in what Grinker writes, even though the word just is not in that part of Unstrange Minds.
Perhaps Olmsted is instead recalling another writer’s reference to smallpox in the case of “Richard” as described by Kanner. In a January 25th review of Unstrange Minds, Olmsted’s source for when “Richard” received the smallpox shot is revealed: Olmsted takes this information from Kanner’s own 1943 study on autism. From the review (part of which I quoted earlier here) is this quote from Kanner:
“Following smallpox vaccination at 12 months, [Richard] had an attack of diarrhea and fever, from which he recovered in somewhat less than a week.”
Olmsted considers this as a “possible clue — a vaccine reaction” and quibbles about the age at which “Richard” regressed. According to “Richard” ’s mother, it was at “about two” years old. Olmsted reads this as “Richard” regressing at “about one year old.” Diarrhea and fever aren’t what would generally be considered signs of developmental regression; Olmsted nonetheless turns these reactions to the smallpox shot into a “possible clue” for linking a shot to “Richard” ’s autism.
Olmsted, it seems, is seeing things in Grinker’s writing that just aren’t there and perhaps that’s no surprise. As Olmsted writes:
It’s slow and tedious work but my motto, apologies to The X-Files, has become “The Truth Is IN There.” And it is, believe me.
There is a truth somewhere in all of these speculations about what causes autism and what autism is and what the parents of various children in Kanner’s 1943 study did, and so forth. But one wonders if perhaps it’s not so much “in” there but (in the spirit of the actual X-Files phrase) “out” there. Olmsted notes that he’s been researching away in various libraries so that there’s a “permanent coating of dust on me and [that he hasn’t] seen the sun since 2005,” so busy has he been unearthing evidence to prove his above-noted theory of what causes autism and what autism is.
One wonders if it might be helpful, perhaps, to get out into the sun and—as another means of finding out what autism is—-hang with some autistic kids and adults, and here I make another confession: I’m a professor (yeah, I guess a lot of you already know that), with the requisite degrees, and I fear I have not been spending as much time in libraries as Olmsted has, at least since 2005. I’m constantly researching autism, often in a more experiential sort of way, by swimming, shopping with, walking beside, and hanging onto my son (his Wednesday afternoon began with two screeches and several thumps and crying and me sighing that I’d put his favorite blanket in the wash, and him smiling it all away and putting on his shoes so we could go bowling). The facts I review over and over are the ones about the shortage of housing and employment opportunities for disabled adults, and how Charlie will need care and support for his whole life, and most of all for the part when I’m not here. I love libraries, I love books, but life with Charlie has shown me that those are just the beginning when you’re trying to learn about something bigger than yourself—bigger like truth.
And it also shows that one has to be careful about reporting what one sees, and about not seeing and imagining things—”smallpox”—in places where they just are not.
The truth’s out there, and gotta be careful that we don’t (if I may again quote Olmsted: “oh, no. No, no, no, no, no”) let preconceived conclusions cloud our minds.
The truth is “in” where, in the antivax closet that Dan Olmsted just got out of?
http://ageofindigos.blogspot.com/2008/07/dan-olmsted-out-of-antivaccine-closet.html
Thanks, Kristina, I appreciated you getting to the bottom of this.
Fortunately it is possible to see what Dr. Kanner said first hand about Richard M., as well as Donald T., Frederick W., Paul G., Barbara K, Virginia S., Herbert B., Alfred L., Charles N., John F., Elaine C.,
See p. 225, Kanner L. (1943) Autistic disturbances of affective contact. Nervous Child 2, 217-50. (p. 9/34 of pdf)
At Neurodiversity.com, Library of the History of Autism Research, Behaviorism & Psychiatry
Good academics involves finding errors in other people’s works. But this doesn’t seem to be an error. At any rate, Olmsted can’t contest Grinker’s thesis.
Even if Olmsted had been right about the smallpox thing, the tone of his writing is mean-spirited, as always, a kind of juvenile “am so!” I read that post of his and it has nothing to do with Grinker’s argument at all! Seems Grinker made an error in some of Kanner’s family’s names and Olmsted wants to gloat about finding this. He is spending so much looking for little errors while the rest of us are with our kids. If he really wanted to help autistic kids and families, he’d do something that wasn’t a waste of time.
FWIW, Richard M.’s mother also said that “while her younger child showed an active anticipatory response to being picked up, Richard had not shown any physiognomic or postural sign of preparedness and had failed to adjust his body to being held by her or the nurse.”
Interestingly enough, the same observation was made for Frederick W.–never assumed an anticipatory posture to be picked up. Donald T.–observed at an early time that he never cried to go with his mother, did not seem to notice his father’s homecoming and indifferent to visiting relatives.
Dan Olmsted accusing Roy Grinker of selective editing and framing (and gratuitously throwing in (again) the innuendo piece on Joyce Chung) in this case seems to be more than a little self-serving, esp. since your observations about chapter 2 v. 7 are quite correct. Perhaps it’s time that he got out of the dusty library for a bit to get some fresh air.
One thing I’ve been wondering lately — has anyone taken the effort to collect anecdotes about big initial “complete” regressions (as you put it) that do NOT coincide with vaccinations? It would be nice to have at least a substantial anecdotal corrective… One such potential anecdote that I saw recently was Ann Bauer’s mention in her July 20 Washington Post piece about her son’s withdrawal at age 4, past the age when he’d have had the bulk of his shots.
We’ve had 2 big regressions here, but neither was in conjunction with anything we could blame it on (unless they were seasonal-affective-regressions, since both happened near the winter solstice?) and neither was a “when did you first notice the autism” moment.
I think if I hadn’t had video to look back on I also would have agressively reported that Patrick was developing normally in his early infancy. I would have been wrong, but I’m pretty sure many parents will say that, and conifdently, with a large amount of ‘parental bias’ if asked.
There may be a lot of imperfect messengers on both sides of this issue. I have no F%*#$*# idea what caused autism in our case. I do know that within hours of 4 month vaccines, she had 1st seizure and we were told that there is no way, no how vaccines were related. No more seizures for a couple of months. Right after 6 month vaccines, we started our run of 300+ seizures and again, no way, no how. The medical establishment has been one big joke. All they know how to do is trial and error guess work on which meds to prescribe. Neurologist are doing more experimenting on these kids than parents, by far.
Did seizure just happen to happen after 4 month shots? Did they just happened to kick into high gear after 6 month shots? Maybe, I don’t know. I do know that there are a lot of very closed minded people on both sides of this argument who have already made up their minds and work backwards from there. I think vaccines are a factor, but not the only factor.
This issue is not going away no matter how much you wish it would.
FJH
http://autismparents.net
Dan Olmsted reported in the spring of 2005 that he searched the hills and dales of Lancaster County, PA, looking for autistic Amish kids and only found three. But he somehow overlooked the mysteriously named Clinic for Special Children, which treats dozens of Amish children who present with symptoms of autism. A pediatrician at the CSC told me Olmsted never contacted the clinic prior to his UPI article’s publication. When asked about this oversight, Olmsted said he tried many times to call the clinic, but nobody called him back. But he won’t say if that was before or after his fatuous “investigation” was published. Olmsted also says, in his defense, that the Amish children have the wrong kind of autism – he was only referring to “regressive” autism, not the kind seen at the CSC.
Here’s the kicker: Lancaster Amish vaccination rates have risen from approximately 20 percent to nearly 90 percent in the 20 years that the CSC has served that population. If Olmsted is right when he says that autism is rare among the Amish, then it would appear vaccines have nothing to do with autism. If Olmsted is wrong, and the prevalence of autism in the Lancaster County Amish is no different than anywhere else, then Olmsted wasn’t looking too hard and has some splainin’ to do.
A third choice, as explained by Olmsted’s sock puppet Mark Blaxill, is that the Amish are immune to autism and so the CDC needs to get to work pronto on a magical Amish pill to confer the same immunity to all of us. (Possible trade names: Mennogen, Stimnomore, Lanconorm).
It’s amazing that anyone takes Olmsted seriously.
Kristina — thanks for the scholarly scolding of Olmstead.
What I want to say to Olmstead, Handley, Blaxill et al: enough with the causation mythologies, already. It is a distraction from what the real needs are.
You wrote:
The facts I review over and over are the ones about the shortage of housing and employment opportunities for disabled adults, and how Charlie will need care and support for his whole life, and most of all for the part when I’m not here.
This is the message autism activists need to be repeating, over and over, until there are services for disabled adults.
About the “overnight” regression. I recently met a woman whose close relative (now in his 30’s) had such a regression, but it was not related to any vaccination or fever at all. She said, he just one day, at 2 years old, woke up with no language and with quirky behaviors. He had been an early talker and had good communication skills before that. The family just assumed he was trying to act like a baby because of the recent birth of his younger sibling. When they realized the changes were permanent, they seeked the diagnosis. But nobody ever blamed vaccines or an illness in his case. They understood it more like something had switched off in his brain.
People often associate various cold “cures” with when the cold naturally passes — “I was doing X and the cold went away!” We’re back to humans always finding links. Our brains just don’t do well with chaos theory.
There is no question children have a lot going on physically. Just about every event coincides with something else, and parents naturally see these as connections.
I was reminded of the coincidence issue when someone repeated the old “Death comes in threes” line regarding television news anchors after Tony Snow died.
1) No one claims vaccines are 100 percent safe, a claim no scientist would ever make about anything — or the person is a lousy scientist. All things have risks.
2) Vaccines are given when 1000s of conditions appear, as most disorders appear either under age 4 or after age 18 (schizophrenia, some bipolar conditions). I now hear parents blaming Gardisil (sp?) for young ladies getting depressed. Again, teenage depression and the vaccine might just overlap.
A “journalist” covering science issues should know a lot more about the science.
We also over-react to risks in our culture. Minnesota law is making us install all new CO detectors in our house. How many people died in the last decade? 92, all in homes with older oil-based furnaces. But… a little boy dies and new laws are passed. I can’t wait until we ban bathtubs — number one killers in homes, and the most common “cause” of head injuries in the young (slipping on wet floors), followed by bicycles. Ban life — it’s too dangerous!!!
For Olmsted and Kirby, any risk is too great, no matter how many lives have been saved by vaccines. I see a lot of paranoid parents, even though most dangers are in the household, not in a vaccine.
@Fielding…
My seizures were about three months and six, a gap of many years, then they resumed during my teen years.
Vaccines and other things were delayed, as I was in ICU after birth and then hospitalized for nine months. At least I know what didn’t cause things… since they didn’t want to “waste” treating me for anything since I was just going to die anyway.
Tammet’s seizures in “Born on a Blue Day” were separated by several years, but definitely triggered a regression. I know I regressed after seizures in the late 1990s and have not been the same, according to family, since then. Far more sensitive to everything since the last serious round of seizures.
I encourage parents and family to pay close attention to all forms of seizure disorder. Medications help, but they eventually seem to lose their effectiveness.
Never assume, as I did, “It’s been years. I’m perfectly fine, now.” Things change in an instant.
Liz,
“This is the message autism activists need to be repeating, over and over, until there are services for disabled adults.”
Complaining to NIH or NIMH would probably get you better results since they are chasing causation mythologies as well and their hands reach into everyone’s pockets.
A major cause of severe non-familial autism is older paternal age in vulnerable men. For some reason this is not often discussed by parents.
Mitochondrial disorder is a separate condition in which vaccination leads to seizures and autism. There is straight familial autism. Autism is a heterogenius disorders with multiple causes and it is increasing in incidence.
I read that not long after it was published and the first thing I thought to myself was – how do errors in a section of the book that has nothing to do with its central ideas constitute a massive faux pas?
I mean, its not as if Professor Grinker relied on a water cooler salesman as his primary source for a central plank of his ideas who then turned out to be as wrong as possible is it? No, that was someone else….the name escapes me….
Liz has hit upon a very real problem and a disservice being done to people with autism. Everyone is chasing their tail about causation and when school opens in a month those schools will be ill prepared to handle the children with special needs. But everyone had their march, their cause. A few people received some attention but society is no better off as a result of all the babble.
I gotta concur with Liz and Another Voice because the proposed regulations for IDEA2004 in relation to state powers came through my inbox this afternoon–and I was chagrined to find that the opportunity for public comment is now concluded. Were others aware of this?
Some advocacy groups did address some aspects but the best to hope for is that issues important to parents were covered.
I checked the blogs, google and grouplists and for the most part it was not addressed or announced. I will try not to allow such an opportunity to slip by again.
DEPARTMENT OF EDUCATION
34 CFR Part 300
RIN 1820–AB60
[Docket ID ED–2008–OSERS–0005]
Assistance to States for the Education
of Children With Disabilities and
Preschool Grants for Children With
Disabilities
AGENCY: Office of Special Education and
Rehabilitative Services, Department of
Education.
ACTION: Notice of proposed rulemaking
(NPRM).
Announcement May 18, 2008
http://edocket.access.gpo.gov/2008/E8-10522.htm
DATES: We must receive your comments
on or before July 28, 2008. (3 days ago).
“A major cause of severe non-familial autism is older paternal age in vulnerable men.”
Are you relying solely on the study of Israeli army medical records for this statement?
“Mitochondrial disorder is a separate condition in which vaccination leads to seizures and autism.”
Do you have a citation for this?
“heterogenius”? Is that the opposite of “gaygenius”?