1/20 children in Northern Ireland have autism

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Anonymous wrote:It’s going to get worse. I am a school psychologist and when I look at the younger siblings of students at the school I am at really worried about how many if them are in strollers staring at screens. Phones and tablets are an effective and cheap babysitter. It’s a low income school where kids don’t have the opportunity to get signed up for activities where they interact.

If there are kids on the spectrum who are borderline with a lot of socialization with parents, siblings, friends, quality pre-schools, attending story times, etc. they might not ever have enough symptoms to have issues or get diagnosed. Now add COVID lock down to that mix where kids didn’t socialize at all for a year not even with cousins. We are seeing kids who are coming in to K with lower language and socialization skills across the board. It’s really, really concerning.


I do NOT think though that you can screen time your way into autism. you can screen time your way into poor socialization, but not into the fundamental brain differences, visible on MRIs, that exist in the brains of true autistic individuals from birth.


That’s not how autism is currently diagnosed. If you don’t have a chance to socialized and have experiences using language and instead are staring down at screens almost all your waking hours then when given tasks in the ADOS-2 you are not going to do well.


researchers are actually well on their way to using brain imaging studies to dx autism. they have already been using them to ascertain that there are in fact 4 distinct subtypes of asd, each with very different neuro mechanisms.

https://www.bbrfoundation.org/content/four-subtypes-autism-spectrum-disorder-are-distinguished-helping-explain-individual


lol no, no such thing. it’s well known that brain imaging is a wild goose chase. https://www.spectrumnews.org/news/brain-imaging-do-over-offers-clues-to-fields-replication-crisis/


That’s… not at all the takeaway of that article. Did you read it?


If you think that article shows brain imaging is “well on its way” to anything useful … well


Sorry but I think you are being slow here.
Autism never was one single thing. The idea of ‘autism’ is a construct we made up bc we couldn’t think of anything better/ didn’t know better yet. The purpose of mris in autism research is to find out what brain differences correlate to what behavioral difference. Them not finding one singular autism mri marker is the whole point. Of course it isn’t surprising there isn’t one. Of course ‘autism’ isn’t just one thing. The whole point of all this is to find out what all these things actually are and then solve for the subjectivity and random bs and actually use science


That’s all interesting and will soak up research funding, but it will not produce anything translational to actually help people.


Aside from the fact that the study you shared was only looking at one specific brain difference among many many many they are researching as markers for all kinds of asd traits, do you honestly think this is as good as it’s going to get? If you think in 100 years, we’ll still diagnose neurodiversity with a human in a room essentially guessing you are crazy (and also why you seem to want that to be the outcome is bewildering)
We are in the infancy of our understanding of all this and we are totally failing right now. I for one will celebrate a time where this gets a hell of a lot better


I think we are throwing scarce research dollars into areas that give professionals career advancement but will never result in any therepeutic benefit. This is unfortunately how a lot of medical research goes - and it’s even worse for social science research that cannot be conducted through a RCT. Just look into the history of Alzheimers research.

Taking a step back, a lot of this research isn’t intended to help people with autism at all. It’s intended to demonstrate how they are different, an oddity of human development, not how they can be helped. All geared towards a deficiency model.

Finally, autism is a social-communication disorder. It is *always* going to be diagnosed with reference to clinical impairment and symptoms, not biomarkers.

To the extent you are bullish on biomarkers, what do you think they will be used for? Prenatal diagnosis and abortion of autistic fetuses. If I’m wrong and we develop good biomarkers, then we will abort all of our future engineers, most creative artists, and out of the box thinkers.


You mean the Alzheimer’s research that’s yielded new drugs that inhibit the build up of specific plaques in the brain that they uncovered as a mechanism for Alzheimer’s using…. Research?
I am bullish on brain scans yielding definitive information about the changes in the brain that lead to neurodiversity leading to greater understanding of its constituent parts and sub categories, leading to more targeted and effective therapies and drugs. You can’t create a drug without first knowing what you are solving for. If mris show that people with greater proclivity towards repetitive behavior have overactivity in a certain area then that’s the mechanism scientists need to target with therapies.
I honestly can’t understand why you need this to be explained


Yes exactly - the Alzheimer’s research that wasted decades of time & money and produced zero results and a major scandal about faked data and approval of very expensive but useless drugs.

https://www.scientificamerican.com/article/alzheimers-inc-when-a-hypothesis-becomes-too-big-to-fail/?amp=true

You seem pretty naive about the state of biomedical research. That’s a nice just-so story that “fMRIs will show an overactive brain region that can be targeted with medication and therapies!” But far from what anyone can reasonably expect to happen.


Actually I’m a journalist who covers health.
And don’t dredge up a 2021 article then tell someone they are ill informed. Cursory google news search shows the fda just approved a drug based on the same mechanism. But apparently medical research is a total waste of time


You’re a health journalist and don’t know about the major controversy surrounding Aduhelm and the amyloid hypothesis? What kind of journalism do you do - reprint university and drug company press releases?


Dude - I cover controversies in healthcare (and beyond) every day. That is the nature of news. It doesn’t mean science should stop.
Oye.


Nobody said science should stop. I said science should focus on therapies instead of wasting time on research that will likely never result in any benefits. And moreover I expect a supposed health journalist of all people to be familiar with the replication crisis, short comings of fMRI, and the search for biomarkers. Anyone who credulously repeats “we will identify the autistic brain through imaging and create targeted treatment!” has falled for a press release pitch.


DP. We participate in longtudinal research at NIH. Pre-COVID, my DS went every year for a re-evaluation and an MRI. I'm glad they're not soley focusing on therapies. While insights may be slow in coming, it's all part of understanding the brain and functioning. I have no idea if autism could ever be diagnosed using brain imaging and don't care if it never can be. This research may not help my kid directly but it's likely to contribute to better understanding his disorder as well as other disorders.


I’m glad it gives you hope. But how much better would it be if they actually delivered evidence-based therapies to your kid and studied how well they worked.


It's not hope. It's science. It's statistically likely that research into the organic causes and structure of a disorder will lead to improved understanding and treatment of the disorder.


+1000
Anonymous
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Anonymous wrote:It’s going to get worse. I am a school psychologist and when I look at the younger siblings of students at the school I am at really worried about how many if them are in strollers staring at screens. Phones and tablets are an effective and cheap babysitter. It’s a low income school where kids don’t have the opportunity to get signed up for activities where they interact.

If there are kids on the spectrum who are borderline with a lot of socialization with parents, siblings, friends, quality pre-schools, attending story times, etc. they might not ever have enough symptoms to have issues or get diagnosed. Now add COVID lock down to that mix where kids didn’t socialize at all for a year not even with cousins. We are seeing kids who are coming in to K with lower language and socialization skills across the board. It’s really, really concerning.


I do NOT think though that you can screen time your way into autism. you can screen time your way into poor socialization, but not into the fundamental brain differences, visible on MRIs, that exist in the brains of true autistic individuals from birth.


That’s not how autism is currently diagnosed. If you don’t have a chance to socialized and have experiences using language and instead are staring down at screens almost all your waking hours then when given tasks in the ADOS-2 you are not going to do well.


researchers are actually well on their way to using brain imaging studies to dx autism. they have already been using them to ascertain that there are in fact 4 distinct subtypes of asd, each with very different neuro mechanisms.

https://www.bbrfoundation.org/content/four-subtypes-autism-spectrum-disorder-are-distinguished-helping-explain-individual


lol no, no such thing. it’s well known that brain imaging is a wild goose chase. https://www.spectrumnews.org/news/brain-imaging-do-over-offers-clues-to-fields-replication-crisis/


That’s… not at all the takeaway of that article. Did you read it?


If you think that article shows brain imaging is “well on its way” to anything useful … well


Sorry but I think you are being slow here.
Autism never was one single thing. The idea of ‘autism’ is a construct we made up bc we couldn’t think of anything better/ didn’t know better yet. The purpose of mris in autism research is to find out what brain differences correlate to what behavioral difference. Them not finding one singular autism mri marker is the whole point. Of course it isn’t surprising there isn’t one. Of course ‘autism’ isn’t just one thing. The whole point of all this is to find out what all these things actually are and then solve for the subjectivity and random bs and actually use science


That’s all interesting and will soak up research funding, but it will not produce anything translational to actually help people.


Aside from the fact that the study you shared was only looking at one specific brain difference among many many many they are researching as markers for all kinds of asd traits, do you honestly think this is as good as it’s going to get? If you think in 100 years, we’ll still diagnose neurodiversity with a human in a room essentially guessing you are crazy (and also why you seem to want that to be the outcome is bewildering)
We are in the infancy of our understanding of all this and we are totally failing right now. I for one will celebrate a time where this gets a hell of a lot better


I think we are throwing scarce research dollars into areas that give professionals career advancement but will never result in any therepeutic benefit. This is unfortunately how a lot of medical research goes - and it’s even worse for social science research that cannot be conducted through a RCT. Just look into the history of Alzheimers research.

Taking a step back, a lot of this research isn’t intended to help people with autism at all. It’s intended to demonstrate how they are different, an oddity of human development, not how they can be helped. All geared towards a deficiency model.

Finally, autism is a social-communication disorder. It is *always* going to be diagnosed with reference to clinical impairment and symptoms, not biomarkers.

To the extent you are bullish on biomarkers, what do you think they will be used for? Prenatal diagnosis and abortion of autistic fetuses. If I’m wrong and we develop good biomarkers, then we will abort all of our future engineers, most creative artists, and out of the box thinkers.


You mean the Alzheimer’s research that’s yielded new drugs that inhibit the build up of specific plaques in the brain that they uncovered as a mechanism for Alzheimer’s using…. Research?
I am bullish on brain scans yielding definitive information about the changes in the brain that lead to neurodiversity leading to greater understanding of its constituent parts and sub categories, leading to more targeted and effective therapies and drugs. You can’t create a drug without first knowing what you are solving for. If mris show that people with greater proclivity towards repetitive behavior have overactivity in a certain area then that’s the mechanism scientists need to target with therapies.
I honestly can’t understand why you need this to be explained


Yes exactly - the Alzheimer’s research that wasted decades of time & money and produced zero results and a major scandal about faked data and approval of very expensive but useless drugs.

https://www.scientificamerican.com/article/alzheimers-inc-when-a-hypothesis-becomes-too-big-to-fail/?amp=true

You seem pretty naive about the state of biomedical research. That’s a nice just-so story that “fMRIs will show an overactive brain region that can be targeted with medication and therapies!” But far from what anyone can reasonably expect to happen.


Actually I’m a journalist who covers health.
And don’t dredge up a 2021 article then tell someone they are ill informed. Cursory google news search shows the fda just approved a drug based on the same mechanism. But apparently medical research is a total waste of time


You’re a health journalist and don’t know about the major controversy surrounding Aduhelm and the amyloid hypothesis? What kind of journalism do you do - reprint university and drug company press releases?


Dude - I cover controversies in healthcare (and beyond) every day. That is the nature of news. It doesn’t mean science should stop.
Oye.


Nobody said science should stop. I said science should focus on therapies instead of wasting time on research that will likely never result in any benefits. And moreover I expect a supposed health journalist of all people to be familiar with the replication crisis, short comings of fMRI, and the search for biomarkers. Anyone who credulously repeats “we will identify the autistic brain through imaging and create targeted treatment!” has falled for a press release pitch.


DP. We participate in longtudinal research at NIH. Pre-COVID, my DS went every year for a re-evaluation and an MRI. I'm glad they're not soley focusing on therapies. While insights may be slow in coming, it's all part of understanding the brain and functioning. I have no idea if autism could ever be diagnosed using brain imaging and don't care if it never can be. This research may not help my kid directly but it's likely to contribute to better understanding his disorder as well as other disorders.


I’m glad it gives you hope. But how much better would it be if they actually delivered evidence-based therapies to your kid and studied how well they worked.


How much better it would be if IDEA were fully funded and I didn't have to battle the school for services/supports. How much better it would be if there were more service providers taking insurance. How much better it would be if families could get respite relief. There are a lot more things in the game of 'how much better'. Everyone has their own favorite 'how much better'.


These are all very separate issues with separate causes. It is not a zero sum game and nor should one be considered at the expense of another.
Also the service producers taking insurance has zero relationship to neurological research
Anonymous
I am biased but I do think it is 90% change in how we diagnose. My ds would never ever have had an asd dx before they changed the dsm. He would only have stood out at school for hyperactivity and sometimes being a sore loser. I grew up in the uk and he fits the mold of a lot of little boys there - very sporty, rough and tumble, not a lot of emotional regulation, low frustration tolerance but a low social impact and no repetitive behaviors or stims. Asd as we diagnose it now almost certainly has genetic roots and sub types that are prob related to genes, how they influence the brain etc.
Anonymous
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Anonymous wrote:
Anonymous wrote:Amish people have zero autism. Wonder why.


Amish people don't use the public schools, don't have health insurance, don't use "English" medical care unless it's completely unavoidable and take care of their own within their own insular communities for their whole lives. They have strong religious beliefs about accepting illness and disabilities as divine will. Of course they record no cases of autism, because they have zero need or motivation to seek a formal diagnosis. Why would they bother? I'm sure there are autistic Amish people just like everywhere else, they just don't bother with labels.


DP. I looked for studies to support the first PPs assertion that autism isn't present in Amish communities. Not surprisingly, I found none. I found a bunch of similarly unsubstantiated claims about Amish health.

Given the heritability of autism, it shouldn't be surprising that an insular group would have few cases if those genes aren't present in their pool.

How exactly is it proven that autism is inherited?
Anonymous
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Anonymous wrote:It’s going to get worse. I am a school psychologist and when I look at the younger siblings of students at the school I am at really worried about how many if them are in strollers staring at screens. Phones and tablets are an effective and cheap babysitter. It’s a low income school where kids don’t have the opportunity to get signed up for activities where they interact.

If there are kids on the spectrum who are borderline with a lot of socialization with parents, siblings, friends, quality pre-schools, attending story times, etc. they might not ever have enough symptoms to have issues or get diagnosed. Now add COVID lock down to that mix where kids didn’t socialize at all for a year not even with cousins. We are seeing kids who are coming in to K with lower language and socialization skills across the board. It’s really, really concerning.


I do NOT think though that you can screen time your way into autism. you can screen time your way into poor socialization, but not into the fundamental brain differences, visible on MRIs, that exist in the brains of true autistic individuals from birth.


That’s not how autism is currently diagnosed. If you don’t have a chance to socialized and have experiences using language and instead are staring down at screens almost all your waking hours then when given tasks in the ADOS-2 you are not going to do well.


researchers are actually well on their way to using brain imaging studies to dx autism. they have already been using them to ascertain that there are in fact 4 distinct subtypes of asd, each with very different neuro mechanisms.

https://www.bbrfoundation.org/content/four-subtypes-autism-spectrum-disorder-are-distinguished-helping-explain-individual


lol no, no such thing. it’s well known that brain imaging is a wild goose chase. https://www.spectrumnews.org/news/brain-imaging-do-over-offers-clues-to-fields-replication-crisis/


That’s… not at all the takeaway of that article. Did you read it?


If you think that article shows brain imaging is “well on its way” to anything useful … well


Sorry but I think you are being slow here.
Autism never was one single thing. The idea of ‘autism’ is a construct we made up bc we couldn’t think of anything better/ didn’t know better yet. The purpose of mris in autism research is to find out what brain differences correlate to what behavioral difference. Them not finding one singular autism mri marker is the whole point. Of course it isn’t surprising there isn’t one. Of course ‘autism’ isn’t just one thing. The whole point of all this is to find out what all these things actually are and then solve for the subjectivity and random bs and actually use science


That’s all interesting and will soak up research funding, but it will not produce anything translational to actually help people.


Aside from the fact that the study you shared was only looking at one specific brain difference among many many many they are researching as markers for all kinds of asd traits, do you honestly think this is as good as it’s going to get? If you think in 100 years, we’ll still diagnose neurodiversity with a human in a room essentially guessing you are crazy (and also why you seem to want that to be the outcome is bewildering)
We are in the infancy of our understanding of all this and we are totally failing right now. I for one will celebrate a time where this gets a hell of a lot better


I think we are throwing scarce research dollars into areas that give professionals career advancement but will never result in any therepeutic benefit. This is unfortunately how a lot of medical research goes - and it’s even worse for social science research that cannot be conducted through a RCT. Just look into the history of Alzheimers research.

Taking a step back, a lot of this research isn’t intended to help people with autism at all. It’s intended to demonstrate how they are different, an oddity of human development, not how they can be helped. All geared towards a deficiency model.

Finally, autism is a social-communication disorder. It is *always* going to be diagnosed with reference to clinical impairment and symptoms, not biomarkers.

To the extent you are bullish on biomarkers, what do you think they will be used for? Prenatal diagnosis and abortion of autistic fetuses. If I’m wrong and we develop good biomarkers, then we will abort all of our future engineers, most creative artists, and out of the box thinkers.


You mean the Alzheimer’s research that’s yielded new drugs that inhibit the build up of specific plaques in the brain that they uncovered as a mechanism for Alzheimer’s using…. Research?
I am bullish on brain scans yielding definitive information about the changes in the brain that lead to neurodiversity leading to greater understanding of its constituent parts and sub categories, leading to more targeted and effective therapies and drugs. You can’t create a drug without first knowing what you are solving for. If mris show that people with greater proclivity towards repetitive behavior have overactivity in a certain area then that’s the mechanism scientists need to target with therapies.
I honestly can’t understand why you need this to be explained


Yes exactly - the Alzheimer’s research that wasted decades of time & money and produced zero results and a major scandal about faked data and approval of very expensive but useless drugs.

https://www.scientificamerican.com/article/alzheimers-inc-when-a-hypothesis-becomes-too-big-to-fail/?amp=true

You seem pretty naive about the state of biomedical research. That’s a nice just-so story that “fMRIs will show an overactive brain region that can be targeted with medication and therapies!” But far from what anyone can reasonably expect to happen.


Actually I’m a journalist who covers health.
And don’t dredge up a 2021 article then tell someone they are ill informed. Cursory google news search shows the fda just approved a drug based on the same mechanism. But apparently medical research is a total waste of time


You’re a health journalist and don’t know about the major controversy surrounding Aduhelm and the amyloid hypothesis? What kind of journalism do you do - reprint university and drug company press releases?


Dude - I cover controversies in healthcare (and beyond) every day. That is the nature of news. It doesn’t mean science should stop.
Oye.


Nobody said science should stop. I said science should focus on therapies instead of wasting time on research that will likely never result in any benefits. And moreover I expect a supposed health journalist of all people to be familiar with the replication crisis, short comings of fMRI, and the search for biomarkers. Anyone who credulously repeats “we will identify the autistic brain through imaging and create targeted treatment!” has falled for a press release pitch.


DP. We participate in longtudinal research at NIH. Pre-COVID, my DS went every year for a re-evaluation and an MRI. I'm glad they're not soley focusing on therapies. While insights may be slow in coming, it's all part of understanding the brain and functioning. I have no idea if autism could ever be diagnosed using brain imaging and don't care if it never can be. This research may not help my kid directly but it's likely to contribute to better understanding his disorder as well as other disorders.


I’m glad it gives you hope. But how much better would it be if they actually delivered evidence-based therapies to your kid and studied how well they worked.


It's not hope. It's science. It's statistically likely that research into the organic causes and structure of a disorder will lead to improved understanding and treatment of the disorder.


the naivety here is breathtaking.

Anonymous
Anonymous wrote:It’s going to get worse. I am a school psychologist and when I look at the younger siblings of students at the school I am at really worried about how many if them are in strollers staring at screens. Phones and tablets are an effective and cheap babysitter. It’s a low income school where kids don’t have the opportunity to get signed up for activities where they interact.

If there are kids on the spectrum who are borderline with a lot of socialization with parents, siblings, friends, quality pre-schools, attending story times, etc. they might not ever have enough symptoms to have issues or get diagnosed. Now add COVID lock down to that mix where kids didn’t socialize at all for a year not even with cousins. We are seeing kids who are coming in to K with lower language and socialization skills across the board. It’s really, really concerning.


I agree that these young kids shouldn't be on screens but as a parent of an aspergers/autistic adult child, I find this psych grab offensive. To this date, scientists have not figures out what causes autism or milder versions such as aspergers.
Anonymous
PS - I have a lot of Irish ancestors. While there's a lot of mythology associated with being Irish, this is the first I've heard that autism is part of it.


It isn't. The study is in Northern Ireland, which during the Troubles was not a good place to live. New studies are showing that when people live under extreme deprivation PLUS constant stress genes may be altered. (The children of those who survived concentration camps also seem to have genetic changes.https://www.research.va.gov/currents/1016-3.cfm)

So, this isn't relevant to those of us whose ancestors came from other parts of Ireland and/or who emigrated a long time ago. It's not being Irish--or Jewish--or anything else that is linked to these genetic changes. It's the enviroment your parents were in.

Nor does this have anything to do with intermarriage, at least for Irish Catholics. The Catholic Church is much stricter about intermarriage than civil laws. You can't marry anyone who is a 4th cousin or closer. There were a lot more intermarriages among close relatives in colonial New England than in Ireland. In many US states you can marry your first cousin.

Next, the whole "Silicon Valley" type industry did NOT occur in Northern Ireland. Companies did not build new facilities that could be destroyed by terrorists in "Bomb Alley," which is what the High Sreet in Belfast was called during the Troubles. The whole tech revolution was confined to the Republic. It's also irrelevant here.

Anonymous
I'm from an area in the US with a lot of crime and violence, and a significant number of kids have learning delays or autism or some other diagnosis.

Not surprised that they have the same issue in northern Ireland, home of the the troubles.
Anonymous
Anonymous wrote:It’s going to get worse. I am a school psychologist and when I look at the younger siblings of students at the school I am at really worried about how many if them are in strollers staring at screens. Phones and tablets are an effective and cheap babysitter. It’s a low income school where kids don’t have the opportunity to get signed up for activities where they interact.

If there are kids on the spectrum who are borderline with a lot of socialization with parents, siblings, friends, quality pre-schools, attending story times, etc. they might not ever have enough symptoms to have issues or get diagnosed. Now add COVID lock down to that mix where kids didn’t socialize at all for a year not even with cousins. We are seeing kids who are coming in to K with lower language and socialization skills across the board. It’s really, really concerning.


Low income doesn’t mean that all they have is screens and tablets. There are playgrounds, libraries with activities, swimming, sleeping, biking (there are very cheap children’s bike second hand), basketball courts. Town Park and Rec and YMCAs have reduced prices based on income. I’m sure you must have lists of activities that would be affordable and appropriate for these kids.
Anonymous
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Anonymous wrote:It’s going to get worse. I am a school psychologist and when I look at the younger siblings of students at the school I am at really worried about how many if them are in strollers staring at screens. Phones and tablets are an effective and cheap babysitter. It’s a low income school where kids don’t have the opportunity to get signed up for activities where they interact.

If there are kids on the spectrum who are borderline with a lot of socialization with parents, siblings, friends, quality pre-schools, attending story times, etc. they might not ever have enough symptoms to have issues or get diagnosed. Now add COVID lock down to that mix where kids didn’t socialize at all for a year not even with cousins. We are seeing kids who are coming in to K with lower language and socialization skills across the board. It’s really, really concerning.


I do NOT think though that you can screen time your way into autism. you can screen time your way into poor socialization, but not into the fundamental brain differences, visible on MRIs, that exist in the brains of true autistic individuals from birth.


That’s not how autism is currently diagnosed. If you don’t have a chance to socialized and have experiences using language and instead are staring down at screens almost all your waking hours then when given tasks in the ADOS-2 you are not going to do well.


researchers are actually well on their way to using brain imaging studies to dx autism. they have already been using them to ascertain that there are in fact 4 distinct subtypes of asd, each with very different neuro mechanisms.

https://www.bbrfoundation.org/content/four-subtypes-autism-spectrum-disorder-are-distinguished-helping-explain-individual


lol no, no such thing. it’s well known that brain imaging is a wild goose chase. https://www.spectrumnews.org/news/brain-imaging-do-over-offers-clues-to-fields-replication-crisis/


That’s… not at all the takeaway of that article. Did you read it?


If you think that article shows brain imaging is “well on its way” to anything useful … well


Sorry but I think you are being slow here.
Autism never was one single thing. The idea of ‘autism’ is a construct we made up bc we couldn’t think of anything better/ didn’t know better yet. The purpose of mris in autism research is to find out what brain differences correlate to what behavioral difference. Them not finding one singular autism mri marker is the whole point. Of course it isn’t surprising there isn’t one. Of course ‘autism’ isn’t just one thing. The whole point of all this is to find out what all these things actually are and then solve for the subjectivity and random bs and actually use science


That’s all interesting and will soak up research funding, but it will not produce anything translational to actually help people.


Aside from the fact that the study you shared was only looking at one specific brain difference among many many many they are researching as markers for all kinds of asd traits, do you honestly think this is as good as it’s going to get? If you think in 100 years, we’ll still diagnose neurodiversity with a human in a room essentially guessing you are crazy (and also why you seem to want that to be the outcome is bewildering)
We are in the infancy of our understanding of all this and we are totally failing right now. I for one will celebrate a time where this gets a hell of a lot better


I think we are throwing scarce research dollars into areas that give professionals career advancement but will never result in any therepeutic benefit. This is unfortunately how a lot of medical research goes - and it’s even worse for social science research that cannot be conducted through a RCT. Just look into the history of Alzheimers research.

Taking a step back, a lot of this research isn’t intended to help people with autism at all. It’s intended to demonstrate how they are different, an oddity of human development, not how they can be helped. All geared towards a deficiency model.

Finally, autism is a social-communication disorder. It is *always* going to be diagnosed with reference to clinical impairment and symptoms, not biomarkers.

To the extent you are bullish on biomarkers, what do you think they will be used for? Prenatal diagnosis and abortion of autistic fetuses. If I’m wrong and we develop good biomarkers, then we will abort all of our future engineers, most creative artists, and out of the box thinkers.


You mean the Alzheimer’s research that’s yielded new drugs that inhibit the build up of specific plaques in the brain that they uncovered as a mechanism for Alzheimer’s using…. Research?
I am bullish on brain scans yielding definitive information about the changes in the brain that lead to neurodiversity leading to greater understanding of its constituent parts and sub categories, leading to more targeted and effective therapies and drugs. You can’t create a drug without first knowing what you are solving for. If mris show that people with greater proclivity towards repetitive behavior have overactivity in a certain area then that’s the mechanism scientists need to target with therapies.
I honestly can’t understand why you need this to be explained


Yes exactly - the Alzheimer’s research that wasted decades of time & money and produced zero results and a major scandal about faked data and approval of very expensive but useless drugs.

https://www.scientificamerican.com/article/alzheimers-inc-when-a-hypothesis-becomes-too-big-to-fail/?amp=true

You seem pretty naive about the state of biomedical research. That’s a nice just-so story that “fMRIs will show an overactive brain region that can be targeted with medication and therapies!” But far from what anyone can reasonably expect to happen.


Actually I’m a journalist who covers health.
And don’t dredge up a 2021 article then tell someone they are ill informed. Cursory google news search shows the fda just approved a drug based on the same mechanism. But apparently medical research is a total waste of time


You’re a health journalist and don’t know about the major controversy surrounding Aduhelm and the amyloid hypothesis? What kind of journalism do you do - reprint university and drug company press releases?


Dude - I cover controversies in healthcare (and beyond) every day. That is the nature of news. It doesn’t mean science should stop.
Oye.


Nobody said science should stop. I said science should focus on therapies instead of wasting time on research that will likely never result in any benefits. And moreover I expect a supposed health journalist of all people to be familiar with the replication crisis, short comings of fMRI, and the search for biomarkers. Anyone who credulously repeats “we will identify the autistic brain through imaging and create targeted treatment!” has falled for a press release pitch.


DP. We participate in longtudinal research at NIH. Pre-COVID, my DS went every year for a re-evaluation and an MRI. I'm glad they're not soley focusing on therapies. While insights may be slow in coming, it's all part of understanding the brain and functioning. I have no idea if autism could ever be diagnosed using brain imaging and don't care if it never can be. This research may not help my kid directly but it's likely to contribute to better understanding his disorder as well as other disorders.


I’m glad it gives you hope. But how much better would it be if they actually delivered evidence-based therapies to your kid and studied how well they worked.


It's not hope. It's science. It's statistically likely that research into the organic causes and structure of a disorder will lead to improved understanding and treatment of the disorder.


the naivety here is breathtaking.



This.
Anonymous
I work in early intervention and some of the pandemic kids who have had a lot of screen time are looking funky. Lack of socialization, trouble regulating emotions, little language and low eye contact.

Anonymous wrote:
Anonymous wrote:It’s going to get worse. I am a school psychologist and when I look at the younger siblings of students at the school I am at really worried about how many if them are in strollers staring at screens. Phones and tablets are an effective and cheap babysitter. It’s a low income school where kids don’t have the opportunity to get signed up for activities where they interact.

If there are kids on the spectrum who are borderline with a lot of socialization with parents, siblings, friends, quality pre-schools, attending story times, etc. they might not ever have enough symptoms to have issues or get diagnosed. Now add COVID lock down to that mix where kids didn’t socialize at all for a year not even with cousins. We are seeing kids who are coming in to K with lower language and socialization skills across the board. It’s really, really concerning.


I agree that these young kids shouldn't be on screens but as a parent of an aspergers/autistic adult child, I find this psych grab offensive. To this date, scientists have not figures out what causes autism or milder versions such as aspergers.
Anonymous
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Anonymous wrote:It’s going to get worse. I am a school psychologist and when I look at the younger siblings of students at the school I am at really worried about how many if them are in strollers staring at screens. Phones and tablets are an effective and cheap babysitter. It’s a low income school where kids don’t have the opportunity to get signed up for activities where they interact.

If there are kids on the spectrum who are borderline with a lot of socialization with parents, siblings, friends, quality pre-schools, attending story times, etc. they might not ever have enough symptoms to have issues or get diagnosed. Now add COVID lock down to that mix where kids didn’t socialize at all for a year not even with cousins. We are seeing kids who are coming in to K with lower language and socialization skills across the board. It’s really, really concerning.


I do NOT think though that you can screen time your way into autism. you can screen time your way into poor socialization, but not into the fundamental brain differences, visible on MRIs, that exist in the brains of true autistic individuals from birth.


That’s not how autism is currently diagnosed. If you don’t have a chance to socialized and have experiences using language and instead are staring down at screens almost all your waking hours then when given tasks in the ADOS-2 you are not going to do well.


researchers are actually well on their way to using brain imaging studies to dx autism. they have already been using them to ascertain that there are in fact 4 distinct subtypes of asd, each with very different neuro mechanisms.

https://www.bbrfoundation.org/content/four-subtypes-autism-spectrum-disorder-are-distinguished-helping-explain-individual


lol no, no such thing. it’s well known that brain imaging is a wild goose chase. https://www.spectrumnews.org/news/brain-imaging-do-over-offers-clues-to-fields-replication-crisis/


That’s… not at all the takeaway of that article. Did you read it?


If you think that article shows brain imaging is “well on its way” to anything useful … well


Sorry but I think you are being slow here.
Autism never was one single thing. The idea of ‘autism’ is a construct we made up bc we couldn’t think of anything better/ didn’t know better yet. The purpose of mris in autism research is to find out what brain differences correlate to what behavioral difference. Them not finding one singular autism mri marker is the whole point. Of course it isn’t surprising there isn’t one. Of course ‘autism’ isn’t just one thing. The whole point of all this is to find out what all these things actually are and then solve for the subjectivity and random bs and actually use science


That’s all interesting and will soak up research funding, but it will not produce anything translational to actually help people.


Aside from the fact that the study you shared was only looking at one specific brain difference among many many many they are researching as markers for all kinds of asd traits, do you honestly think this is as good as it’s going to get? If you think in 100 years, we’ll still diagnose neurodiversity with a human in a room essentially guessing you are crazy (and also why you seem to want that to be the outcome is bewildering)
We are in the infancy of our understanding of all this and we are totally failing right now. I for one will celebrate a time where this gets a hell of a lot better


I think we are throwing scarce research dollars into areas that give professionals career advancement but will never result in any therepeutic benefit. This is unfortunately how a lot of medical research goes - and it’s even worse for social science research that cannot be conducted through a RCT. Just look into the history of Alzheimers research.

Taking a step back, a lot of this research isn’t intended to help people with autism at all. It’s intended to demonstrate how they are different, an oddity of human development, not how they can be helped. All geared towards a deficiency model.

Finally, autism is a social-communication disorder. It is *always* going to be diagnosed with reference to clinical impairment and symptoms, not biomarkers.

To the extent you are bullish on biomarkers, what do you think they will be used for? Prenatal diagnosis and abortion of autistic fetuses. If I’m wrong and we develop good biomarkers, then we will abort all of our future engineers, most creative artists, and out of the box thinkers.


You mean the Alzheimer’s research that’s yielded new drugs that inhibit the build up of specific plaques in the brain that they uncovered as a mechanism for Alzheimer’s using…. Research?
I am bullish on brain scans yielding definitive information about the changes in the brain that lead to neurodiversity leading to greater understanding of its constituent parts and sub categories, leading to more targeted and effective therapies and drugs. You can’t create a drug without first knowing what you are solving for. If mris show that people with greater proclivity towards repetitive behavior have overactivity in a certain area then that’s the mechanism scientists need to target with therapies.
I honestly can’t understand why you need this to be explained


Yes exactly - the Alzheimer’s research that wasted decades of time & money and produced zero results and a major scandal about faked data and approval of very expensive but useless drugs.

https://www.scientificamerican.com/article/alzheimers-inc-when-a-hypothesis-becomes-too-big-to-fail/?amp=true

You seem pretty naive about the state of biomedical research. That’s a nice just-so story that “fMRIs will show an overactive brain region that can be targeted with medication and therapies!” But far from what anyone can reasonably expect to happen.


Actually I’m a journalist who covers health.
And don’t dredge up a 2021 article then tell someone they are ill informed. Cursory google news search shows the fda just approved a drug based on the same mechanism. But apparently medical research is a total waste of time


You’re a health journalist and don’t know about the major controversy surrounding Aduhelm and the amyloid hypothesis? What kind of journalism do you do - reprint university and drug company press releases?


Dude - I cover controversies in healthcare (and beyond) every day. That is the nature of news. It doesn’t mean science should stop.
Oye.


Nobody said science should stop. I said science should focus on therapies instead of wasting time on research that will likely never result in any benefits. And moreover I expect a supposed health journalist of all people to be familiar with the replication crisis, short comings of fMRI, and the search for biomarkers. Anyone who credulously repeats “we will identify the autistic brain through imaging and create targeted treatment!” has falled for a press release pitch.


DP. We participate in longtudinal research at NIH. Pre-COVID, my DS went every year for a re-evaluation and an MRI. I'm glad they're not soley focusing on therapies. While insights may be slow in coming, it's all part of understanding the brain and functioning. I have no idea if autism could ever be diagnosed using brain imaging and don't care if it never can be. This research may not help my kid directly but it's likely to contribute to better understanding his disorder as well as other disorders.


I’m glad it gives you hope. But how much better would it be if they actually delivered evidence-based therapies to your kid and studied how well they worked.


It's not hope. It's science. It's statistically likely that research into the organic causes and structure of a disorder will lead to improved understanding and treatment of the disorder.


the naivety here is breathtaking.



It’s ‘breathtakingly naive’ to think that neuroscience will advance?
That seems like a reach.
Anonymous
Anonymous wrote:
PS - I have a lot of Irish ancestors. While there's a lot of mythology associated with being Irish, this is the first I've heard that autism is part of it.


It isn't. The study is in Northern Ireland, which during the Troubles was not a good place to live. New studies are showing that when people live under extreme deprivation PLUS constant stress genes may be altered. (The children of those who survived concentration camps also seem to have genetic changes.https://www.research.va.gov/currents/1016-3.cfm)

So, this isn't relevant to those of us whose ancestors came from other parts of Ireland and/or who emigrated a long time ago. It's not being Irish--or Jewish--or anything else that is linked to these genetic changes. It's the enviroment your parents were in.

Nor does this have anything to do with intermarriage, at least for Irish Catholics. The Catholic Church is much stricter about intermarriage than civil laws. You can't marry anyone who is a 4th cousin or closer. There were a lot more intermarriages among close relatives in colonial New England than in Ireland. In many US states you can marry your first cousin.

Next, the whole "Silicon Valley" type industry did NOT occur in Northern Ireland. Companies did not build new facilities that could be destroyed by terrorists in "Bomb Alley," which is what the High Sreet in Belfast was called during the Troubles. The whole tech revolution was confined to the Republic. It's also irrelevant here.



I am from the uk. You do know that this is not the Northern Ireland of the 1970s-1990s right? This is Northern Ireland today - which is, while not the richest area, decidedly not the deprived, war torn hellscape you seem to think.
Anonymous
Anonymous wrote:
Anonymous wrote:
PS - I have a lot of Irish ancestors. While there's a lot of mythology associated with being Irish, this is the first I've heard that autism is part of it.


It isn't. The study is in Northern Ireland, which during the Troubles was not a good place to live. New studies are showing that when people live under extreme deprivation PLUS constant stress genes may be altered. (The children of those who survived concentration camps also seem to have genetic changes.https://www.research.va.gov/currents/1016-3.cfm)

So, this isn't relevant to those of us whose ancestors came from other parts of Ireland and/or who emigrated a long time ago. It's not being Irish--or Jewish--or anything else that is linked to these genetic changes. It's the enviroment your parents were in.

Nor does this have anything to do with intermarriage, at least for Irish Catholics. The Catholic Church is much stricter about intermarriage than civil laws. You can't marry anyone who is a 4th cousin or closer. There were a lot more intermarriages among close relatives in colonial New England than in Ireland. In many US states you can marry your first cousin.

Next, the whole "Silicon Valley" type industry did NOT occur in Northern Ireland. Companies did not build new facilities that could be destroyed by terrorists in "Bomb Alley," which is what the High Sreet in Belfast was called during the Troubles. The whole tech revolution was confined to the Republic. It's also irrelevant here.



I am from the uk. You do know that this is not the Northern Ireland of the 1970s-1990s right? This is Northern Ireland today - which is, while not the richest area, decidedly not the deprived, war torn hellscape you seem to think.


The parents of the kids today grew up during the Troubles. It's epigenetics.
Anonymous
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:Amish people have zero autism. Wonder why.


Amish people don't use the public schools, don't have health insurance, don't use "English" medical care unless it's completely unavoidable and take care of their own within their own insular communities for their whole lives. They have strong religious beliefs about accepting illness and disabilities as divine will. Of course they record no cases of autism, because they have zero need or motivation to seek a formal diagnosis. Why would they bother? I'm sure there are autistic Amish people just like everywhere else, they just don't bother with labels.


DP. I looked for studies to support the first PPs assertion that autism isn't present in Amish communities. Not surprisingly, I found none. I found a bunch of similarly unsubstantiated claims about Amish health.

Given the heritability of autism, it shouldn't be surprising that an insular group would have few cases if those genes aren't present in their pool.

How exactly is it proven that autism is inherited?


A quick Google search shows multiple studies showing that ASD is strongly linked to genetics.
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