Lawyers, it is said, never ask a question to which they do not already know the answer. This column has adopted the opposite tack, asking questions to which nobody knows the answer.
Where are the autistic Amish? That was one such question, and it led to our tentative conclusion autism seems surprisingly rare in this isolated group.
What could that mean? In our next question, we speculated the Amish might not be exposed to some factor that contributes to a higher autism rate in the rest of the population.
Some readers objected to this approach as hopelessly unscientific and anecdotal and doubtless subject to its own biases. We agree, but we also think somebody must start somewhere and see where things go.
Notably, in response to the Amish articles, a top government official last month told parents he is considering whether to launch a study of the autism rate among the Amish or other unvaccinated populations. (Some parents think a mercury-based preservative in vaccinations triggered their children's autism.)
The last Age of Autism column started with another such question: Where are the autistic children from families who homeschool and choose not to vaccinate? We quoted a doctor in Florida who treats autistic children, has an autistic son, and has homeschooled his daughter.
"It's largely nonexistent," Dr. Jeff Bradstreet said. "It's an extremely rare event." He said he had tried to get epidemiologists to do a scientific study, but they doubted the results would apply to a broader population. (We heard the same thing about the Amish -- until the government health official expressed interest.)
Among the 2 million children homeschooled in the United States, we deduced that the population of unvaccinated kids could easily surpass 4 percent, equal to the upper range of exemptions in some public school districts. That would mean tens of thousands of homeschoolers are likely unvaccinated, and a minimum of several hundred would be autistic at the current rate of 1 in 166 children born in the United States.
In the past week, a number of people with information and insights have accepted our standing invitation and gotten in touch. Here is a sample:
Until my son's (autism) diagnosis last year at age 3, we were non-vaccinating homeschoolers. I know of another homeschooling mom who didn't vaccinate: she refuses to admit her son is on the spectrum (he obviously is). In the homeschool group we were involved in: three boys were on the spectrum, high functioning. The parents refused to label their sons. This is why they homeschool. I do not know if these parents vaccinated, but I am almost certain they did not.
Using low DIAGNOSED autism rates among non-vaccinated homeschoolers to prove vaccines are dangerous (which I believe for certain kids, they are) is a flawed argument. There are autism spectrum disorders among non-vaccinated homeschoolers, but many of these parents don't get an official diagnosis PRECISELY because they do not want to deal with the school districts (and after my experiences, I can see their point).
Homeschooling and autism are not independent. I'm unlikely to homeschool my autistic son in algebra or Bible studies or Latin, because he can't count or speak or understand English. If you check the number of autistic children enrolled in normal public school curricula, you'll find they're missing there too (at least the most severe autistics are). They're all getting special ed from wherever seems best to get it, which isn't normal public schooling, and isn't homeschooling either.
The question is not, is there some association between homeschooling or lack of immunization and low autism rates, but does public schooling cause (or exacerbate) autism? Public schools in the last 20 years have become far more intolerant of behaviors that are not in the center of the spectrum and public school employees are now predominantly neurotypical. Put 100 Amish kids in the public school system and the rate at which the public school will think they are autistic will be the same as their non-Amish kids.
I am the mother of a 4-year-old high-functioning autistic son who is unvaccinated and I homeschool him. I live in Lane County, Ore. I have not found any other situations like mine, of an autistic child who is unvaccinated and homeschooled.
This first round of feedback contains some interesting threads. One is that the same impulse that motivates parents to homeschool their children could also lead them to avoid an autism diagnosis. A second is that fewer autistic children are likely to be homeschooled in the first place.
Clearly, there are unvaccinated children with autism in families that homeschool -- a point Dr. Bradstreet had stipulated, adding it would prove "an extremely rare event."
He also told us, "Unless they were massively exposed to mercury through lots of amalgams (mercury dental fillings in the mother) and/or big-time fish eating, I've not had a single case."
One such child's mother "lived next to a volcano, had 27 amalgams and ate fish twice a day," he said.
So it's worth pointing out that in Lane County, Ore. -- the home of the 4-year-old unvaccinated boy with autism -- elevated mercury is a prominent issue. In April of last year the state updated a warning first made in 1997 "of increased levels of mercury in fish caught from Dorena Reservoir." They said children six and under should eat no more than one four-ounce meal every two months and that women of child-bearing age should limit their intake to 8 ounces per month.
The statement attributes the mercury contamination to "natural volcanic rocks and minerals and geothermal activities in the upper drainage areas. The movement of mercury into waterways and the bioaccumulation of mercury in fish may be influenced by past mining practices in the watershed, but this subject is not well studied."
Also interesting: Oregon has the highest reported autism rate in the country, and Eugene's is even higher. Why? That is another question no one knows the answer to.
A recent study in Texas found an association between environmental exposure to mercury and autism rates in that state's counties. A fascinating exception was one county where the autism rate was high, yet the level of mercury exposure from coal-fired power plants and incinerators was not. On closer inspection, that county turned out to have been the site of a large mercury mine.
So, we have gotten just a couple of responses from parents of homeschooled, unvaccinated children with autism, though we know tens of thousands of parents of autistic children are following this column. We hope to get more.
Hearing right off, however, about an unvaccinated child with autism living in an area with an inexplicably high autism rate and an issue with mercury is ... intriguing.
It is particularly so because the same anecdotal association appeared in our Amish reports. We came across only a handful of Amish with autism, and in several cases they were in the minority of children who had received immunizations.
One doctor said he was treating six autistic Amish children who had not been vaccinated. He said four of them had very high levels of mercury in their bodies, which he attributed to environmental pollution. He believes that caused their autism, although most medical experts say there is no evidence of a link between mercury and autism, however the exposure might have occurred.
(The other homeschooling parent quoted above lived in both California and New York state, moving frequently, making it impossible by her own account to plot any correlation to geography.)
It cannot be overemphasized that intriguing information is not scientific data. But it makes this column all the more eager to hear from readers with anything to add to this topic -- consider this an all-points bulletin. And it makes us hopeful that the government will indeed muster its resources to find out once and for all: Do unvaccinated groups have fewer autistic children? Is there any sign that environmental mercury is associated with the cases that are identified?
When you ask questions to which you do not know the answer, you never know what you will find.
The Age of Autism welcomes reader input. E-mail: firstname.lastname@example.org
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