An extremely valuable essay, Matt, but for one point: a tendency at the very beginning and in the last paragraph to squeeze Trump into the (possibly) “rational” and “normal” side of a dichotomy that does not exist, at least with respect to policies that affect public welfare. Trump is not in this regard someone normal or rational who just so happens to surround himself with kooks and cranks. He is the Kook in Chief (and a narcissist as well) who has so little ego control that he can’t keep his mouth shut. Any socially useful public policy that might leak out of him or his admin is likely to be the result of a random accident, not rational forethought.
This article is a game changer. It should be made free and/or submitted for publication in every media outlet in the country. It would shed light on this otherwise poorly clarified story (and, perhaps least importantly, it would be good advertising for Slow Boring).
There are studies that show that the incidence of high-support-need autism has risen as well, though not as much as the total diagnosis rate. I don't know if there is a good analysis of how much of that is recategorization. But I do think the assortative mating hypothesis also has some legs.
The period of the rise in incidence has also seen:
- Many people having a broader dating pool, and thus prioritizing compatibility more highly.
- More gender equality in careers, hence more people meeting a spouse at work and having the same profession.
Both of these can lead to more cases where both parents have some ASD traits.
I would probably have been diagnosed as ASD were I to be born now. I was socially awkward and an extremely early reader. Was very weird and isolated until I grew out of it in middle school or so. I'm probably in similar company here in the SB commentariat. But I'm grateful not to have had that label attached, I don't see how it would have helped to have been even more singled out. Maybe if it could have gotten me out of gym class, though I got through it, and I might even be the better for having had to push through something I hated.
I wondered about that too - would I have been put on the spectrum when I was younger...my assumption that I was "normal, just not _good_ at social stuff" definitely made me think it was something I could try to do...I could imagine going "well, I'm ASD, this is never going to work" and giving up.
But I asked on the CHH comments thread once how the ASD folks felt about receiving a diagnosis and the responses (there were a handful) were universally positive...the typical sentiment was "it was huge to understand the _why_ behind why my life was clearly different from everyone else's" and helped them to manage the frustration and keep trying and eventually succeeding. (These were young men who we'd have said have aspbergers back in the day...capable of getting degrees, holding down a job, but really struggling with social queues.)
I've known parents who were sure to get their child diagnosed on the spectrum but then over time, what ho, the child grew out of it. Does this happen a lot with ASD people?
Fans of either "Game of Thrones" or "The Last of Us" may already know that young actress Bella Ramsey (more famous as the star, Ella, in 'Last of Us") was diagnosed with autism. A person on the set of 'Last of Us' had an autistic daughter and suggested Bella get checked.
Highly functional, obvi. That said, she does keep getting cast in shows with zombies...
I think one of the biggest harms is not in discouraging Tylenol use, but the follow on effects on other less studied but higher stakes medical care during pregnancy. When I was considering getting pregnant, I was taking a Category C medication with no generally considered safe substitutes. I had to decide if I would continue my medication during pregnancy, without a lot of data about its use in pregnancy, or discontinue the medication, with known risks to my health and subsequently the fetus’s health. I was lucky to have the support of a perinatal specialist in making the decision, and decided to continue the medication. I also participated in a registry study that will provide data to other prospective parents who are facing similar decisions about this class of medication.
These are decisions where the choice is not between risk or no risk, but between balancing two sets of difficult to quantify risks. In these cases following the data and the science is so important. When our own public health agencies over interpret the science in ways that are not supported by the data, it undermines the entire enterprise.
Matt I actually have the same predilection to go on circular routes as opposed to out and back routes. I think it provides a more diverse visual experience, especially in the cities which often have interesting buildings and neighborhoods to view. But I think the most important point about autism screening is that it really can and should be done early (before the age of 3 according to the pediatrician’s website). If a child is diagnosed early then they can do early treatment that should lead to a better outcome for these kids and ideally actually save money on overall health spending.
Am I the only one here who thinks this is really just revenge against nerds, since even in Silicon Valley, they openly look to fund founders with what they call "rizz and tizz" (charisma mixed with autism)?
Half of what is colloquially called "autism" is just grumpy parents mad that their kid would rather do interesting math puzzles than play sports.
This is more of an aside, but I kinda wish they'd have a priority now... the whole British thing where they elect party leaders (who may get replaced before the next election depending on circumstances) and are able to actually, well, lead seems better than the headless chickens we seem left with.
In local elections, we have a fruitcake running for office who had written a book about vaccine conspiracies, and he says "look, the CDC says they were unsafe!"
The increase in diagnosis has left us with a substantial population of very high functioning autistic people. Which makes it all the more disturbing that the message is “this diagnosis so bad it is worth risking COVID for”
I have a couple of diagnosed neurodivergencies: ADHD and Dyslexia. In both cases, there are benefits to me in being aware of my diagnosis and being able to use it to communicate some needs for accommodations.
With ADHD, the diagnosis led to my taking medication that does a lot to improve my symptoms and make my life more manageable. It led to providers recommending some methods of managing time and my physical space that were very helpful to me, but would probably seem pretty absurd to someone who didn't have ADHD. It also allowed me to gain insight into communicating how my mind works, which I could share with my husband to help him understand some of my challenges.
With dyslexia, I was able to access accommodations in school, such as using a computer for writing and a spell checker. It also gives me the ability to explain to my staff some of what might otherwise seem baffling, such as why I can read a brief and understand everything in it but struggle to figure out how to pronounce the author's name without assistance.
However, in both cases, I would be described as "high functioning." In some ways, this is likely due to less severe symptoms. In other ways, this is more a reflection of having learned good skills for coping, masking, and using appropriate accommodations.
I have had the negative experience of having people make negative assumptions about my abilities because of my diagnosis. For example, the Dean of Students at my law school recommended that I drop out during my first week, because in her experience, "lots of students with Dyslexia go to law school to prove something but universally fail because of the amount of reading involved." When she later tried to organize a photo shoot with the two of us after I won a prestigious fellowship, I reminded her of this. She told me that she had decided that I probably didn't really have dyslexia.
But a benefit of my neurodivergence is the realization that people's minds and internal lives can have immense variety. However, there seems to have been a toxic side effect of people being more open and accepting of folks who are neurodivergent or gender divergent, where that comes with a narrowing of the definition of what "normal" entails and, in some cases, a hardening of ideology around the existence of a "normal" and defined categories of "difference."
I am a strong supporter of Trans rights. But I have had some off-putting conversations with folks who insist that I must be non-binary because I am not particularly gender centric and don't personally experience myself as having an inherently female mind or spirit, and instead experience my gender as largely the result of biology, gendered experiences, and learned performative femininity. I don't doubt anyone who says their experience of gender is one of having an inherent mental or emotional gender. But I don't appreciate the attempt to kick me out of my gender for not having that experience.
Similarly, I have had people suggest that my ability to hyperfocus or memorize large amounts of information may indicate that I am on the spectrum. Having many friends on the spectrum and learning how they experience situations, I am very confident that this is not the case. I just really love learning and have a good memory. (And possibly ADHD hyperfocus issues.)
I have also seen numerous memes from communities on the autism spectrum about how they imagine non-autistic people experience the world and operate. Many of these focus on the idea that more neurotypical people understand the unwritten norms and rules of different social interactions and situations as if we have a secret copy of a rules booklet from a board game and are just hiding the ball from folks on the spectrum by pretending that they are fluid and vague. If this imagined world of utter social certainty were the definition of not being on the spectrum, 99% of the world would be on the spectrum.
Yet, when I do children's programming for kids with special needs, having a label that lets me know whether the behavior I am seeing is the result of ADHD, sensory processing disorder, or ADS is incredibly helpful in understanding how to react and manage the situation.
The whole issue seems like such a double-edged sword with no easy answers. Tightening up diagnostic criteria risks leaving out individuals who could benefit from understanding and accommodation. Open it up too much, and the descriptions start to lose their meaning; the definition of normal and healthy can become too constrictive and small.
I suspect that most people, if not all, are at various points along various spectrums that crisscross in various places within their own fairly unique and complex patterns. Having ways to discuss these spectrums as a means to explain our internal lives to others or find ways to maximize our health and wellbeing seems incredibly useful. But treating them all as diseases with distinct causes and fixes would seem to risk pathologizing us all.
In any event, I suspect reduced use of Tylenol will not turn out to be the solution to any of this. It feels like an attempt to shift blame for all this onto women who weren't tough enough to muscle through fever and pain in pregnancy. Both useless and cruel, it seems classically in line with this administration's approach to all problems.
There has been a lot of expanding diagnostic criteria or combining multiple disorders into a single disorder for other neurological or psychiatric disorders. Depression used to be Depressive Psychosis (melancholic and psychotic depression) and Depressive Neurosis, which was all other types of depression. (During the last DSM revision there was an attempt to bring back Melancholic Depression in part because there is a blood test for it but it was rejected.) Before that Depressive Psychosis was often seen as a form of what was then Manic Depression because that type of depression is the most common type of depression in the Depressive Episodes of people with what was then called Manic Depression and families tended to have cases of both unipolar and bipolar depression. Bipolar II wasn't in the DSM until 1994. Now it's diagnosed more than Bipolar I, particularly in women.
It's a good thing to update diagnostic categories when you get more data, but in the interest of tracking the prevalence of disorders over time, it would be nice if these diagnostic criterial had sub-categories that exactly matched previous diagnostic criteria even if they are no longer considered best practice. (One of the arguments against bringing back Melancholic Depression was that we had years of literature that studied the broader category of Major Depressive Disorder.) At least then when reporting on the changes in prevalence, it would be easier to identify changes in prevalence that are due to changes to the diagnostic criteria.
An extremely valuable essay, Matt, but for one point: a tendency at the very beginning and in the last paragraph to squeeze Trump into the (possibly) “rational” and “normal” side of a dichotomy that does not exist, at least with respect to policies that affect public welfare. Trump is not in this regard someone normal or rational who just so happens to surround himself with kooks and cranks. He is the Kook in Chief (and a narcissist as well) who has so little ego control that he can’t keep his mouth shut. Any socially useful public policy that might leak out of him or his admin is likely to be the result of a random accident, not rational forethought.
This article is a game changer. It should be made free and/or submitted for publication in every media outlet in the country. It would shed light on this otherwise poorly clarified story (and, perhaps least importantly, it would be good advertising for Slow Boring).
There are studies that show that the incidence of high-support-need autism has risen as well, though not as much as the total diagnosis rate. I don't know if there is a good analysis of how much of that is recategorization. But I do think the assortative mating hypothesis also has some legs.
The period of the rise in incidence has also seen:
- Many people having a broader dating pool, and thus prioritizing compatibility more highly.
- More gender equality in careers, hence more people meeting a spouse at work and having the same profession.
Both of these can lead to more cases where both parents have some ASD traits.
I would probably have been diagnosed as ASD were I to be born now. I was socially awkward and an extremely early reader. Was very weird and isolated until I grew out of it in middle school or so. I'm probably in similar company here in the SB commentariat. But I'm grateful not to have had that label attached, I don't see how it would have helped to have been even more singled out. Maybe if it could have gotten me out of gym class, though I got through it, and I might even be the better for having had to push through something I hated.
I wondered about that too - would I have been put on the spectrum when I was younger...my assumption that I was "normal, just not _good_ at social stuff" definitely made me think it was something I could try to do...I could imagine going "well, I'm ASD, this is never going to work" and giving up.
But I asked on the CHH comments thread once how the ASD folks felt about receiving a diagnosis and the responses (there were a handful) were universally positive...the typical sentiment was "it was huge to understand the _why_ behind why my life was clearly different from everyone else's" and helped them to manage the frustration and keep trying and eventually succeeding. (These were young men who we'd have said have aspbergers back in the day...capable of getting degrees, holding down a job, but really struggling with social queues.)
I've known parents who were sure to get their child diagnosed on the spectrum but then over time, what ho, the child grew out of it. Does this happen a lot with ASD people?
Fans of either "Game of Thrones" or "The Last of Us" may already know that young actress Bella Ramsey (more famous as the star, Ella, in 'Last of Us") was diagnosed with autism. A person on the set of 'Last of Us' had an autistic daughter and suggested Bella get checked.
Highly functional, obvi. That said, she does keep getting cast in shows with zombies...
https://www.nbcnews.com/pop-culture/pop-culture-news/bella-ramsey-shares-autism-diagnosis-season-one-last-us-rcna197497
What?! It’s weird to want your walks to loop?
I think one of the biggest harms is not in discouraging Tylenol use, but the follow on effects on other less studied but higher stakes medical care during pregnancy. When I was considering getting pregnant, I was taking a Category C medication with no generally considered safe substitutes. I had to decide if I would continue my medication during pregnancy, without a lot of data about its use in pregnancy, or discontinue the medication, with known risks to my health and subsequently the fetus’s health. I was lucky to have the support of a perinatal specialist in making the decision, and decided to continue the medication. I also participated in a registry study that will provide data to other prospective parents who are facing similar decisions about this class of medication.
These are decisions where the choice is not between risk or no risk, but between balancing two sets of difficult to quantify risks. In these cases following the data and the science is so important. When our own public health agencies over interpret the science in ways that are not supported by the data, it undermines the entire enterprise.
Matt I actually have the same predilection to go on circular routes as opposed to out and back routes. I think it provides a more diverse visual experience, especially in the cities which often have interesting buildings and neighborhoods to view. But I think the most important point about autism screening is that it really can and should be done early (before the age of 3 according to the pediatrician’s website). If a child is diagnosed early then they can do early treatment that should lead to a better outcome for these kids and ideally actually save money on overall health spending.
Am I the only one here who thinks this is really just revenge against nerds, since even in Silicon Valley, they openly look to fund founders with what they call "rizz and tizz" (charisma mixed with autism)?
Half of what is colloquially called "autism" is just grumpy parents mad that their kid would rather do interesting math puzzles than play sports.
Newsom will run away with the resistance liberal vote on current form:
https://www.youtube.com/watch?v=M-i-wn_ko6g
All of the other 2028 Dem presidential "contenders" must be praying that CA prop 50 fails because if it passes, we will have a frontrunner.
This is more of an aside, but I kinda wish they'd have a priority now... the whole British thing where they elect party leaders (who may get replaced before the next election depending on circumstances) and are able to actually, well, lead seems better than the headless chickens we seem left with.
Yes...I would certainly try to make the shadow cabinet happen which if done well could make for a better communications strategy if nothing else.
So who is dumb enough to look to Trump or RFK for medical advice (that wasn't already invested in similar nonsense)?
Trusting HHS under Kennedy seems like something a normal person wouldn't do.
In local elections, we have a fruitcake running for office who had written a book about vaccine conspiracies, and he says "look, the CDC says they were unsafe!"
The increase in diagnosis has left us with a substantial population of very high functioning autistic people. Which makes it all the more disturbing that the message is “this diagnosis so bad it is worth risking COVID for”
I have a couple of diagnosed neurodivergencies: ADHD and Dyslexia. In both cases, there are benefits to me in being aware of my diagnosis and being able to use it to communicate some needs for accommodations.
With ADHD, the diagnosis led to my taking medication that does a lot to improve my symptoms and make my life more manageable. It led to providers recommending some methods of managing time and my physical space that were very helpful to me, but would probably seem pretty absurd to someone who didn't have ADHD. It also allowed me to gain insight into communicating how my mind works, which I could share with my husband to help him understand some of my challenges.
With dyslexia, I was able to access accommodations in school, such as using a computer for writing and a spell checker. It also gives me the ability to explain to my staff some of what might otherwise seem baffling, such as why I can read a brief and understand everything in it but struggle to figure out how to pronounce the author's name without assistance.
However, in both cases, I would be described as "high functioning." In some ways, this is likely due to less severe symptoms. In other ways, this is more a reflection of having learned good skills for coping, masking, and using appropriate accommodations.
I have had the negative experience of having people make negative assumptions about my abilities because of my diagnosis. For example, the Dean of Students at my law school recommended that I drop out during my first week, because in her experience, "lots of students with Dyslexia go to law school to prove something but universally fail because of the amount of reading involved." When she later tried to organize a photo shoot with the two of us after I won a prestigious fellowship, I reminded her of this. She told me that she had decided that I probably didn't really have dyslexia.
But a benefit of my neurodivergence is the realization that people's minds and internal lives can have immense variety. However, there seems to have been a toxic side effect of people being more open and accepting of folks who are neurodivergent or gender divergent, where that comes with a narrowing of the definition of what "normal" entails and, in some cases, a hardening of ideology around the existence of a "normal" and defined categories of "difference."
I am a strong supporter of Trans rights. But I have had some off-putting conversations with folks who insist that I must be non-binary because I am not particularly gender centric and don't personally experience myself as having an inherently female mind or spirit, and instead experience my gender as largely the result of biology, gendered experiences, and learned performative femininity. I don't doubt anyone who says their experience of gender is one of having an inherent mental or emotional gender. But I don't appreciate the attempt to kick me out of my gender for not having that experience.
Similarly, I have had people suggest that my ability to hyperfocus or memorize large amounts of information may indicate that I am on the spectrum. Having many friends on the spectrum and learning how they experience situations, I am very confident that this is not the case. I just really love learning and have a good memory. (And possibly ADHD hyperfocus issues.)
I have also seen numerous memes from communities on the autism spectrum about how they imagine non-autistic people experience the world and operate. Many of these focus on the idea that more neurotypical people understand the unwritten norms and rules of different social interactions and situations as if we have a secret copy of a rules booklet from a board game and are just hiding the ball from folks on the spectrum by pretending that they are fluid and vague. If this imagined world of utter social certainty were the definition of not being on the spectrum, 99% of the world would be on the spectrum.
Yet, when I do children's programming for kids with special needs, having a label that lets me know whether the behavior I am seeing is the result of ADHD, sensory processing disorder, or ADS is incredibly helpful in understanding how to react and manage the situation.
The whole issue seems like such a double-edged sword with no easy answers. Tightening up diagnostic criteria risks leaving out individuals who could benefit from understanding and accommodation. Open it up too much, and the descriptions start to lose their meaning; the definition of normal and healthy can become too constrictive and small.
I suspect that most people, if not all, are at various points along various spectrums that crisscross in various places within their own fairly unique and complex patterns. Having ways to discuss these spectrums as a means to explain our internal lives to others or find ways to maximize our health and wellbeing seems incredibly useful. But treating them all as diseases with distinct causes and fixes would seem to risk pathologizing us all.
In any event, I suspect reduced use of Tylenol will not turn out to be the solution to any of this. It feels like an attempt to shift blame for all this onto women who weren't tough enough to muscle through fever and pain in pregnancy. Both useless and cruel, it seems classically in line with this administration's approach to all problems.
There has been a lot of expanding diagnostic criteria or combining multiple disorders into a single disorder for other neurological or psychiatric disorders. Depression used to be Depressive Psychosis (melancholic and psychotic depression) and Depressive Neurosis, which was all other types of depression. (During the last DSM revision there was an attempt to bring back Melancholic Depression in part because there is a blood test for it but it was rejected.) Before that Depressive Psychosis was often seen as a form of what was then Manic Depression because that type of depression is the most common type of depression in the Depressive Episodes of people with what was then called Manic Depression and families tended to have cases of both unipolar and bipolar depression. Bipolar II wasn't in the DSM until 1994. Now it's diagnosed more than Bipolar I, particularly in women.
It's a good thing to update diagnostic categories when you get more data, but in the interest of tracking the prevalence of disorders over time, it would be nice if these diagnostic criterial had sub-categories that exactly matched previous diagnostic criteria even if they are no longer considered best practice. (One of the arguments against bringing back Melancholic Depression was that we had years of literature that studied the broader category of Major Depressive Disorder.) At least then when reporting on the changes in prevalence, it would be easier to identify changes in prevalence that are due to changes to the diagnostic criteria.
> Bipolar II wasn't in the DSM until 1994. Now it's diagnosed more than Bipolar I
Sure, because basically everyone has bipolar II lol
Was there a drop in autism diagnoses of people after the 1982 Tylenol poisoning murders? I bet women reduced usage for several months after that.