The Somali community in Minnesota has long been reported to have unusually high rates of autism among their children — a shocking 1 in 16 at last count. Could a common cultural practice heighten risk?
FWIW, can't recall the source off the top of my head, but I heard that the Somali American community have called it "the Minnesota disease" since the rates of profound autism are not remotely that high in Somalia itself.
Only time I ever got knocked out was laughing gas for routine wisdom tooth removal
Edit: ok, I just googled it and apparently being unconscious for it is NOT routine???
That's very interesting and compelling (although the practice is indeed disturbing). But you looked at where autism was high and found a possible cause in more frequent use of anesthesia. That's post hoc rationalization to some degree. It's not a true experiment. It's more data mining.
Can you do the opposite and find a population, for which you don't know the frequency of autism, that has more frequent use of anesthesia than an otherwise statistically similar population? If so, you could make a prediction that the rate of autism would be higher in one group than the other. You then ask people to test your prediction by doing statistical analysis.
That's a meaningful test. It's a true experiment because you don't know how it will turn out. You are just predicting without knowing.
Well, as I wrote, it's a hypothesis, I don't pretend to be able to conduct a valid study. The best approach, and one that I've been advocating for more than five years now, would be based on national health registries that have both parental surgery records and offspring health records. Working on it. Not easy.
Here's the difference between the two tests. In one you say I have a hypothesis that accurately predicts the winners of all the NFL playoff games for last year, including scores. In the other your hypothesis turns out to accurately predict next year's winners and scores.
That effort is admirable but it’s too much like data mining. It’s too ambitious. You’re trying to prove too much. Instead, or in addition to, you should try to think of a population that you could use as the basis for a statistical prediction.
That’s more elegant and much more powerful. You don’t conduct the study — if you did, you would introduce confirmation bias. You just make the prediction, and invite others to test out your hypothesis.
I’ve been working on the issue of how to better test scientific hypotheses about complex adaptive systems. This is one way that few people tend to take advantage of.
I look forward to the "hypotheses" put forward here. Those of us not involved in research but touched by autism are to some degree left with data mining. I am most interested in the fact that (according to Open Evidence) 50-80% of ASD kids have gut dysbiosis (allowing for heterogeneity of studies). Is this causal or consequential? How would you design a study to answer this question?
You raise exactly the right questions. Unfortunately the answers to those questions are not simple and anything I could say in a comment here would probably be so simplified as to be misleading. Good scientists are working on chasing down these possibilities, and new causal inference techniques have been developed, but it's still not possible to find or rule out causes. We can't of course run experiments on humans and that takes away our strongest tool.
I'm reminded that not all of our advancements come through "gold standard research". Dr Marshall, in the 1980's was so frustrated that the medical community would not believe that bacteria could inhabit the acidic environment of the stomach and cause ulcers that he drank a slurry of H. pylori and gave himself peptic ulcers. This completely changed the management of a chronic and debilitating illness to a treatable infection. You will have picked up that I have my eye on microbes as a viable culprit in the rise of autism. If one looks at the rate of rise of surgeries over the past 50 years there is no comparison to the rise In the incidence of autism. Nor does the rate of prescribed antibiotics compare to the rise in autism...however...if you add in the excessive use of agricultural antibiotics...that further contaminate soil and water you begin to understand that the microbes that are essential for human health are under major assault. I have been following Dr. James Adams who is treating children with microbial transplantation...but in my humble opinion more work needs to be done to better understand why these kids have dysbiotic guts.
That's a very perceptive comment. I too hope that we learn why these kids have dysbiotic guts. If I can think of anything that may help, I'll certainly let you know.
Thank you...I appreciate your engagement. The study that fostered my interest in microbes was the 2019 study done by Nadya Markova at the Institute of Science in Bulgaria. She studied children with autism and their mothers compared with mothers of neurotypical children and their offspring. She looked at the L-forms of bacteria in the blood of these groups and found that the mothers of children with autism had a dysbiotic mix of L-bacteria (compared with a eubiotic mix in the neurotypical group) which (from previous work she did with BCG) can be passed vertically through the placenta to the developing fetus. She postulates that children are born colonized with dysbiotic microbes. It is a small study and it has not been replicated...in fact it has not generally been accepted by the scientific community. It is a fascinating hypothesis that (if confirmed) would answer some of the questions about gut dysbiosis and heritability.
That's interesting. But if you were to formulate a hypothesis based on her work, what would it be? Would it be vague or specific? Could you say, for example, something as strong as “every autistic child was exposed to maternal dysbiosis in utero”? Or would it need to be weak like "maternal dysbiosis might influence fetal neurodevelopment to an unknown degree"?
Once the hypothesis is formulated, maybe you can figure out a good way to test it. It's hard to think of a dramatic test like Barry Marshall infecting himself with bacteria but there may be other effective ways to do it. Making a prediction on what might be found in a particular natural experiment might work well.
This really has little to do with the science itself but a lot to do with how you get attention to the work being done and push Bobby Kennedy to fund it.
Abhorrent, truly unbelievably inhumane and barbaric. People say we shouldn't talk about it because "cultural sensitivity," but I say the heck with that.
"Culturally-specific" FGM easily draws parallels to "gender-affirming" FGM and is another third rail that the PC types won't dare address. Minnesota just happens to be a hotbed of both (and autistic girls tend to be overrepresented among those calling themselves "trans men"). To declare any of these practices to be harmful or abusive, let alone say out loud that autism itself is a problem, is to risk the wrath of "tolerant progressives" who have run that state and others like California, New York, and the various People's Republics of New England into the ground.
Thank ye gods for truth-tellers like Jill and so many others willing to disregard activists' shrieking, and to speak up for vulnerable people whose public health crises are being made worse by the mainstream's unwillingness to pipe up when something is wrong. They are quick to say that "silence is violence," but at the same time remain mum on their preferred issues, at which point people who do sound the alarm are met with accusations of "harmful speech". It's all gameplaying BS that puts failed ideology ahead of the lives of actual human beings.
Secret histories of a common cultural practice of toxic exposure + lack of curiosity simply because the hypothesis you suggest hasn't been considered. Thank you always, Jill, for being bold enough to stand in the hot loneliness of asking the questions so many of us inquire internally.
Well the FGM idea is a new one, barbaric practice that is illegal in Minnesota, but that doesn’t mean it doesn’t happen. But on another note. One of my best friends is a special education teacher in MN, we were talking about the high number of Somalian children with autism 25 years ago. One thing she had mentioned is the high intelligence of both parents, like two engineers or both parents being doctors or college professors. So literally for the last 25 years we have joked that two highly intelligent people probably shouldn’t breed. Opposites attract for a reason maybe?
This is a real thing in autism research, and it's called the Eindhoven phenomenon. Named for a city in the Netherlands known as "Europe's Silicon Valley," where engineers marry engineers and produce autistic children -- because being engineers, both parents probably were autistic themselves. I myself was the first-born of parents holding graduate degrees who did not have me until they were in their mid-30s. My mother was very bright but socially naive (she was really my only friend in the world, and has sadly since passed from cancer), while my father (still alive and kicking)... is a trust-fund brat and what you might call an idiot savant, with maybe a 60/40 emphasis on the idiot part (and the brat part). Probably some form of FAS too since his mother was a raging drunk while pregnant for him and his three siblings, one of whom (a younger brother) had schizophrenia and later died of a heroin overdose. And yes he drank too. The entire family enabled it. My mother was a teetotaler because her father drank. But one thing that interests me is whether some kind of FAS-adjacent kind of autism-ish cell damage can be the result of paternal alcoholism, not just moms drinking while pregnant. If there is sperm damage from drunk dads just like there is from older dads that then causes mutations to the next generation's DNA.
Now, I turned out to be what would have been called "twice-exceptional" and was diagnosed with Asperger's disease (I call it disease rather than "difference" or even "disorder," because I compare it more to the debilitating tragedy of Alzheimer's than some sort of "gift" in any sense of the word) in the mid-1990s at about 8 years old. This is when the DSM-IV was published and saw an "explosion" of cases due to the incorporation of Asperger's into the fold (Dr Allen Frances who developed this edition now says that's a mistake -- fat lot of good that does, 30 years later). But having a high IQ has meant zilch in terms of achievement or success, because book-smarts aren't everything -- you have to be socially adept in order to even break through entry level. It took me 10 years to get an effectively useless undergrad degree in the humanities from a third-tier state school, and if you're not inclined toward a career in academia, liberal arts degrees are garbage credentials not worth the toilet paper they're written on. The 10-year slog was not because I was stupid, but because I was emotionally and socially unfit and suffered burnout every step of the way.
I was also pretty much a home-schooled autodidact for nearly the entirety of my K-12 years, because my poor mother was embroiled in a court battle with corrupt officials in my local school district. They were pressuring her heavily, even to the point of legal threats and police involvement, to have me sent to a state mental institution of their choosing, despite the fact that said institutions did not even want an Asperger's child because they only served the severely afflicted. The director of one such facility quipped to my mother that I did belong in an institution, but that institution was Harvard. It turned out that my district was getting kickbacks that they shouldn't have from federal IDEA funding, and basically shoving kids into a diagnosis-for-hire pipeline and intimidating parents into sending them away by getting social services involved. As with any simmering scandal that gets swept under the rug, no one ever was held accountable and never will be. Most of the people who ran this scheme are now dead.
The long and short of it is that I missed out on the "normal" experience, where maybe I might have developed better social skills if I had been permitted to attend school in the first place. Then again, I probably also would have been bullied and killed myself at 14. But not having crucial social development in those early years hampered me for the rest of my life. That's the other thing RFK Jr was right about: autism destroys lives.
I don't have a job; I never did, and most likely never will, because I cannot for the life of me get through a job interview without coming across as a stammering, incompetent fool. I don't do well coming up with off-the-cuff answers to hypothetical scenarios. But they do not care about the practical skills you have. They want to know if you're a "team player" and a "good fit for the company culture." The personality-inventory industry has made billions of dollars developing screening tests to ensure that the brightest people with the most dedicated work ethic are effectively blacklisted for life, or relegated to toilet-scrubbing in gas stations and earning a pittance, because they're not the type who would genuinely enjoy attending the company picnic. Now those personality tests are fed into A.I. and only making the application process impossible. The workaround that's been given by a successive series of articles in various papers' business sections, as A.I. replaces the likes of CareerBuilder and Monster (both of which just filed for bankruptcy), is to go analog, forget the resume and application process altogether, and "lean on your network." Which is a nigh impossibility for those like me who are biologically incapable of building one.
I actually applaud RFK Jr for making me feel "seen" and striking a nerve among the Pollyannas of the "neurodiversity" cult. He's correct in that I don't work or pay taxes (a cursory glance at Reddit's autism subforums reveals there are a LOT of those who are not on the severe end of the spectrum -- in fact they might even be classified as genius-level, at least on the IQ scale -- who are basically suicidal NEETs crying into their physics textbooks while yearning for the merciful release of death). There wouldn't have been such a feverish backlash to his remarks if they were baseless.
I feel so badly for the parents of severely autistic children and those children (adult children in some cases) themselves, because the Tik Tok self-diagnosers and the Hollywood mythology of "quirky AuDHD" have sucked all the oxygen out of the room of this discussion. So too, for that matter, have the higher-functioning "Aspies" who are in places of privilege like academia, entertainment, and Silicon Valley, and who either don't know or don't care about the severely afflicted -- or even about their fellow "Aspies" who are languishing in unemployment and isolation because they can't find jobs or dates (RFK Jr was right again). Contrary to popular belief, it is possible for even Sheldon Cooper or Matilda Wormwood to end up on welfare or homeless rather than building rocketships. And contrary to popular belief there are a lot of us "Aspies" who feel empathy for and are seeking solidarity with the parents of the severely afflicted, and who also want research to focus on prevention and a cure. I started my Substack as a way of bridging that gap and unifying against so-called "neurodiversity," which I like to call Woke Scientology. Just like detransitioners fighting against the gender cult.
I'll be 39 in about a month and looking into what I can do to not make 40. In the meantime, I'm just typing away into the void, hoping to raise some kind of awareness for exactly the kind of things you just mentioned: smart people should remain childless because their kids have a good chance of going on to become "twice-exceptional" failures. It's better to have mediocre intelligence and be a bubbly extrovert, than an A student who can't baffle with bullshit. People would be surprised to find out that there are a lot of Mensa gatherings going on at the downtown unemployment office.
FWIW, can't recall the source off the top of my head, but I heard that the Somali American community have called it "the Minnesota disease" since the rates of profound autism are not remotely that high in Somalia itself.
Only time I ever got knocked out was laughing gas for routine wisdom tooth removal
Edit: ok, I just googled it and apparently being unconscious for it is NOT routine???
That's very interesting and compelling (although the practice is indeed disturbing). But you looked at where autism was high and found a possible cause in more frequent use of anesthesia. That's post hoc rationalization to some degree. It's not a true experiment. It's more data mining.
Can you do the opposite and find a population, for which you don't know the frequency of autism, that has more frequent use of anesthesia than an otherwise statistically similar population? If so, you could make a prediction that the rate of autism would be higher in one group than the other. You then ask people to test your prediction by doing statistical analysis.
That's a meaningful test. It's a true experiment because you don't know how it will turn out. You are just predicting without knowing.
Well, as I wrote, it's a hypothesis, I don't pretend to be able to conduct a valid study. The best approach, and one that I've been advocating for more than five years now, would be based on national health registries that have both parental surgery records and offspring health records. Working on it. Not easy.
By the way, I saw your letter to the editor in the New York Times. Well written and impressive.
Here's the difference between the two tests. In one you say I have a hypothesis that accurately predicts the winners of all the NFL playoff games for last year, including scores. In the other your hypothesis turns out to accurately predict next year's winners and scores.
Which test will impress?
That effort is admirable but it’s too much like data mining. It’s too ambitious. You’re trying to prove too much. Instead, or in addition to, you should try to think of a population that you could use as the basis for a statistical prediction.
That’s more elegant and much more powerful. You don’t conduct the study — if you did, you would introduce confirmation bias. You just make the prediction, and invite others to test out your hypothesis.
I’ve been working on the issue of how to better test scientific hypotheses about complex adaptive systems. This is one way that few people tend to take advantage of.
I look forward to the "hypotheses" put forward here. Those of us not involved in research but touched by autism are to some degree left with data mining. I am most interested in the fact that (according to Open Evidence) 50-80% of ASD kids have gut dysbiosis (allowing for heterogeneity of studies). Is this causal or consequential? How would you design a study to answer this question?
You raise exactly the right questions. Unfortunately the answers to those questions are not simple and anything I could say in a comment here would probably be so simplified as to be misleading. Good scientists are working on chasing down these possibilities, and new causal inference techniques have been developed, but it's still not possible to find or rule out causes. We can't of course run experiments on humans and that takes away our strongest tool.
I'm reminded that not all of our advancements come through "gold standard research". Dr Marshall, in the 1980's was so frustrated that the medical community would not believe that bacteria could inhabit the acidic environment of the stomach and cause ulcers that he drank a slurry of H. pylori and gave himself peptic ulcers. This completely changed the management of a chronic and debilitating illness to a treatable infection. You will have picked up that I have my eye on microbes as a viable culprit in the rise of autism. If one looks at the rate of rise of surgeries over the past 50 years there is no comparison to the rise In the incidence of autism. Nor does the rate of prescribed antibiotics compare to the rise in autism...however...if you add in the excessive use of agricultural antibiotics...that further contaminate soil and water you begin to understand that the microbes that are essential for human health are under major assault. I have been following Dr. James Adams who is treating children with microbial transplantation...but in my humble opinion more work needs to be done to better understand why these kids have dysbiotic guts.
That's a very perceptive comment. I too hope that we learn why these kids have dysbiotic guts. If I can think of anything that may help, I'll certainly let you know.
Thank you...I appreciate your engagement. The study that fostered my interest in microbes was the 2019 study done by Nadya Markova at the Institute of Science in Bulgaria. She studied children with autism and their mothers compared with mothers of neurotypical children and their offspring. She looked at the L-forms of bacteria in the blood of these groups and found that the mothers of children with autism had a dysbiotic mix of L-bacteria (compared with a eubiotic mix in the neurotypical group) which (from previous work she did with BCG) can be passed vertically through the placenta to the developing fetus. She postulates that children are born colonized with dysbiotic microbes. It is a small study and it has not been replicated...in fact it has not generally been accepted by the scientific community. It is a fascinating hypothesis that (if confirmed) would answer some of the questions about gut dysbiosis and heritability.
That's interesting. But if you were to formulate a hypothesis based on her work, what would it be? Would it be vague or specific? Could you say, for example, something as strong as “every autistic child was exposed to maternal dysbiosis in utero”? Or would it need to be weak like "maternal dysbiosis might influence fetal neurodevelopment to an unknown degree"?
Once the hypothesis is formulated, maybe you can figure out a good way to test it. It's hard to think of a dramatic test like Barry Marshall infecting himself with bacteria but there may be other effective ways to do it. Making a prediction on what might be found in a particular natural experiment might work well.
This really has little to do with the science itself but a lot to do with how you get attention to the work being done and push Bobby Kennedy to fund it.
Truly horrible practice. Whether or not it's (indirectly) causing autism.
Abhorrent, truly unbelievably inhumane and barbaric. People say we shouldn't talk about it because "cultural sensitivity," but I say the heck with that.
"Culturally-specific" FGM easily draws parallels to "gender-affirming" FGM and is another third rail that the PC types won't dare address. Minnesota just happens to be a hotbed of both (and autistic girls tend to be overrepresented among those calling themselves "trans men"). To declare any of these practices to be harmful or abusive, let alone say out loud that autism itself is a problem, is to risk the wrath of "tolerant progressives" who have run that state and others like California, New York, and the various People's Republics of New England into the ground.
Thank ye gods for truth-tellers like Jill and so many others willing to disregard activists' shrieking, and to speak up for vulnerable people whose public health crises are being made worse by the mainstream's unwillingness to pipe up when something is wrong. They are quick to say that "silence is violence," but at the same time remain mum on their preferred issues, at which point people who do sound the alarm are met with accusations of "harmful speech". It's all gameplaying BS that puts failed ideology ahead of the lives of actual human beings.
Secret histories of a common cultural practice of toxic exposure + lack of curiosity simply because the hypothesis you suggest hasn't been considered. Thank you always, Jill, for being bold enough to stand in the hot loneliness of asking the questions so many of us inquire internally.
Well the FGM idea is a new one, barbaric practice that is illegal in Minnesota, but that doesn’t mean it doesn’t happen. But on another note. One of my best friends is a special education teacher in MN, we were talking about the high number of Somalian children with autism 25 years ago. One thing she had mentioned is the high intelligence of both parents, like two engineers or both parents being doctors or college professors. So literally for the last 25 years we have joked that two highly intelligent people probably shouldn’t breed. Opposites attract for a reason maybe?
This is a real thing in autism research, and it's called the Eindhoven phenomenon. Named for a city in the Netherlands known as "Europe's Silicon Valley," where engineers marry engineers and produce autistic children -- because being engineers, both parents probably were autistic themselves. I myself was the first-born of parents holding graduate degrees who did not have me until they were in their mid-30s. My mother was very bright but socially naive (she was really my only friend in the world, and has sadly since passed from cancer), while my father (still alive and kicking)... is a trust-fund brat and what you might call an idiot savant, with maybe a 60/40 emphasis on the idiot part (and the brat part). Probably some form of FAS too since his mother was a raging drunk while pregnant for him and his three siblings, one of whom (a younger brother) had schizophrenia and later died of a heroin overdose. And yes he drank too. The entire family enabled it. My mother was a teetotaler because her father drank. But one thing that interests me is whether some kind of FAS-adjacent kind of autism-ish cell damage can be the result of paternal alcoholism, not just moms drinking while pregnant. If there is sperm damage from drunk dads just like there is from older dads that then causes mutations to the next generation's DNA.
Now, I turned out to be what would have been called "twice-exceptional" and was diagnosed with Asperger's disease (I call it disease rather than "difference" or even "disorder," because I compare it more to the debilitating tragedy of Alzheimer's than some sort of "gift" in any sense of the word) in the mid-1990s at about 8 years old. This is when the DSM-IV was published and saw an "explosion" of cases due to the incorporation of Asperger's into the fold (Dr Allen Frances who developed this edition now says that's a mistake -- fat lot of good that does, 30 years later). But having a high IQ has meant zilch in terms of achievement or success, because book-smarts aren't everything -- you have to be socially adept in order to even break through entry level. It took me 10 years to get an effectively useless undergrad degree in the humanities from a third-tier state school, and if you're not inclined toward a career in academia, liberal arts degrees are garbage credentials not worth the toilet paper they're written on. The 10-year slog was not because I was stupid, but because I was emotionally and socially unfit and suffered burnout every step of the way.
I was also pretty much a home-schooled autodidact for nearly the entirety of my K-12 years, because my poor mother was embroiled in a court battle with corrupt officials in my local school district. They were pressuring her heavily, even to the point of legal threats and police involvement, to have me sent to a state mental institution of their choosing, despite the fact that said institutions did not even want an Asperger's child because they only served the severely afflicted. The director of one such facility quipped to my mother that I did belong in an institution, but that institution was Harvard. It turned out that my district was getting kickbacks that they shouldn't have from federal IDEA funding, and basically shoving kids into a diagnosis-for-hire pipeline and intimidating parents into sending them away by getting social services involved. As with any simmering scandal that gets swept under the rug, no one ever was held accountable and never will be. Most of the people who ran this scheme are now dead.
The long and short of it is that I missed out on the "normal" experience, where maybe I might have developed better social skills if I had been permitted to attend school in the first place. Then again, I probably also would have been bullied and killed myself at 14. But not having crucial social development in those early years hampered me for the rest of my life. That's the other thing RFK Jr was right about: autism destroys lives.
I don't have a job; I never did, and most likely never will, because I cannot for the life of me get through a job interview without coming across as a stammering, incompetent fool. I don't do well coming up with off-the-cuff answers to hypothetical scenarios. But they do not care about the practical skills you have. They want to know if you're a "team player" and a "good fit for the company culture." The personality-inventory industry has made billions of dollars developing screening tests to ensure that the brightest people with the most dedicated work ethic are effectively blacklisted for life, or relegated to toilet-scrubbing in gas stations and earning a pittance, because they're not the type who would genuinely enjoy attending the company picnic. Now those personality tests are fed into A.I. and only making the application process impossible. The workaround that's been given by a successive series of articles in various papers' business sections, as A.I. replaces the likes of CareerBuilder and Monster (both of which just filed for bankruptcy), is to go analog, forget the resume and application process altogether, and "lean on your network." Which is a nigh impossibility for those like me who are biologically incapable of building one.
I actually applaud RFK Jr for making me feel "seen" and striking a nerve among the Pollyannas of the "neurodiversity" cult. He's correct in that I don't work or pay taxes (a cursory glance at Reddit's autism subforums reveals there are a LOT of those who are not on the severe end of the spectrum -- in fact they might even be classified as genius-level, at least on the IQ scale -- who are basically suicidal NEETs crying into their physics textbooks while yearning for the merciful release of death). There wouldn't have been such a feverish backlash to his remarks if they were baseless.
I feel so badly for the parents of severely autistic children and those children (adult children in some cases) themselves, because the Tik Tok self-diagnosers and the Hollywood mythology of "quirky AuDHD" have sucked all the oxygen out of the room of this discussion. So too, for that matter, have the higher-functioning "Aspies" who are in places of privilege like academia, entertainment, and Silicon Valley, and who either don't know or don't care about the severely afflicted -- or even about their fellow "Aspies" who are languishing in unemployment and isolation because they can't find jobs or dates (RFK Jr was right again). Contrary to popular belief, it is possible for even Sheldon Cooper or Matilda Wormwood to end up on welfare or homeless rather than building rocketships. And contrary to popular belief there are a lot of us "Aspies" who feel empathy for and are seeking solidarity with the parents of the severely afflicted, and who also want research to focus on prevention and a cure. I started my Substack as a way of bridging that gap and unifying against so-called "neurodiversity," which I like to call Woke Scientology. Just like detransitioners fighting against the gender cult.
I'll be 39 in about a month and looking into what I can do to not make 40. In the meantime, I'm just typing away into the void, hoping to raise some kind of awareness for exactly the kind of things you just mentioned: smart people should remain childless because their kids have a good chance of going on to become "twice-exceptional" failures. It's better to have mediocre intelligence and be a bubbly extrovert, than an A student who can't baffle with bullshit. People would be surprised to find out that there are a lot of Mensa gatherings going on at the downtown unemployment office.