7 ms·

> while others, including parents of children with severe autism, complained that he trivialized the real problems of a real disability. As a former autism res

> while others, including parents of children with severe autism, complained that he trivialized the real problems of a real disability. As a former autism researcher I empathize with these parents. The cohort I worked with, considered mild Autism 20 years ago (now probably considered "severe") had unmistakable psychological impairments. They were not just quirky, or socially awkward, and certainly not giving highly articulate TED talks, or campaigning on twitter for NIH 'normies' to cancel genetic research on Autism. I don't question there exists a spectrum of asocial phenotypes, with some neurocorrelate. But it's been a great disservice to individuals with Autism 'proper' to be grouped (even if just by name) in a spectrum with folks with such mild issues.

camtarn 4y ago
These things are not mutually exclusive. There are people who can speak articulately and campaign on Twitter some days, and have disabling meltdowns and total inability to manage life on other days. Like many things, the truth is probably somewhere in the middle: I have no doubt that there are also a lot of people who have taken one dubious questionnaire and self-diagnosed as autistic, and I also empathize with the parents of autistic children who seem light-years apart from autistic folk who can at least live mostly independently. I don't know what the future of autism research and funding needs to look like, but it feels like there still needs to be further change.
- subroutine 4y ago
  > These things are not mutually exclusive. There are people who can speak articulately and campaign on Twitter some days, and have disabling meltdowns and total inability to manage life on other days. That describes 90% of the population. The group of kids I worked with I'm sure have never used twitter. My main qualm is with the anti-research advocacy. Those that are advocating against basic research seem worried about losing their autism 'affiliation'. More research means scientists working towards defining physiological underpinnings, which would lead to more scientific diagnosis criteria (e.g. genomic markers, fMRI/DRI markers, etc.). And if they are found to not have those characteristics, well, what does that mean for them? Does it mean their issues aren't real? Of course not. But it certainly doesn't make sense to call them Autistic. Their disorder should be coined a different name.
  - nicoburns 4y ago
    > have disabling meltdowns and total inability to manage life on other days. > That describes 90% of the population. It most definitely does not. I used to think it did too because it's my normal. But it turns out that most people manage to get on with life just fine on a consistent basis. Perhaps you have children in mind? But this applies to adults too. > More research means scientists working towards defining physiological underpinnings, which would lead to more scientific diagnosis criteria (e.g. genomic markers, fMRI/DRI markers, etc.). And if they are found to not have those characteristics, well, what does that mean for them? Does it mean their issues aren't real? Of course not. But it certainly doesn't make sense to call them Autistic. Their disorder should be coined a different name. I'm definitely in agreement with you that more research is called for and should be encouraged as much as possible. My strong suspicion is that "mild" and "severe" autism (and quite possibly related conditions like ADHD) will turn out to have to have a common physiological basis. I guess this belief (as lacking in evidence as we are at this point) is partly why I think it does make sense to classify everyone under the label "Autism".
    - philjohn 4y ago
      Yes - agree here. Father to two Autistic children, both of whom are high functioning, attend mainstream school, excel etc. The sheer burnout my son faces after dealing with social events is palpable - masking utterly drains him.
    - subroutine 4y ago
      If someone labels cats and dogs and sheep and goats and a bunch of other animals as "dogs" just because they want to be called dogs, and feed those labeled samples into a classifier for training, when given novel samples of species, the pretrained classifier will recognize ("diagnose") anything on 4 legs as a dog. I imagine the same will happen if we compile a genotype database that includes dna from everyone on the "spectrum" (i.e. the "case" dataset will be highly polluted with control samples, which will no doubt turn up null results). Don't get me wrong, I take your point. It's just that whatever is underpinning severe autism is subtle, and was already going to be difficult to tease out. Now I feel like it's perhaps impossible.
- deleted 4y ago
  [deleted]
- cunidev 4y ago
  > I have no doubt that there are also a lot of people who have taken one dubious questionnaire and self-diagnosed as autistic Not to drop names, but sounds like El$n Mu$k. As someone with close bonds with people diagnosed with "real" high-functioning autism, it is quite horrible to see random people (Mu$k claiming himself so[1], or mainstream newspapers attaching Asperger's to figures like Putin) being mislabeled as so for visibility, or because AS individuals have acquired this myth of being cool, quirky geniuses in popular culture. Truth be told (correct me if I am wrong), the most common high-functioning autism symptoms are also present in other syndromes (especially the social ones), and even in neurotypical people, that (as should be obvious) without a proper assessment, such quick speculations or self-assessment are usually garbage. [1] https://www.inc.com/minda-zetlin/elon-musk-aspergers-self-test-entrepreneurs-temple-grandin.html https://www.inc.com/minda-zetlin/elon-musk-aspergers-self-te..., ironic how the article starts suggesting readers to do an autism self-test
nicoburns 4y ago
> But it's been a great disservice to individuals with Autism 'proper' to be grouped (even if just by name) in a spectrum with folks with such mild issues. I feel like we need to both group and separate. We need to group because everyone across the spectrum has things in common, and a lot of the accommodations that "mild" and "severe" autistics need be similar (for example, needing quiet spaces), and we shouldn't dismiss these needs in those with "mild" autism because they're coping with things better than others. I feel like we also shouldn't dismiss how helpful the insight gained from autistics who are more easily able to communicate might be in determining appropriate care for those who are less able to communicate. We need to separate because some autistics have needs that others don't. And it is of course important that we recognise that and give the more disabling impairments the extra attention they deserve.
- gehwartzen 4y ago
  I agree with you in general. I think over time fields that are "fuzzy" with definitions, like psychology, will hopefully add additional layers of specificity to a number of neuro diseases/ailments/conditions. In the end if you took any condition out of the DSM each human probably falls some where along a spectrum for each one and the ultimate combination is what makes us "us" as individuals. I could certainly see autism be rated on a 1-10 scale of severity to provide additional clarity or each one of those ten points on the gradient receiving a new diagnostic name. Going further we could probably have a broader scale that includes severe autism on one side and severe empathy on the other. The empathetic traits aren't as well studied even though being severely empathetic can also have a host of social challenges.
  - nicoburns 4y ago
    Please don't consider autism as opposite to empathy. Autistic individuals are often highly empathetic. It's just that they don't express it in the same way as neurotypical people and it can get lost in translation.
- bashmelek 4y ago
  I feel this too. People have different needs. I had an ex who despaired at the idea of marrying me because she didn’t want kids with autism. To me, I’m fine, my kids would be fine, and I don’t want any stigma or to be seen as defective. I just want the same respect anyone else gets, and an ounce of understanding. Other people, however, really struggle, either themselves or to help someone close to them. They don’t want their situation trivialized, and need effective help. Striking this balance will take a mindful culture, and the field can help much in guiding that, along with the other benefits they bring with research and interventions and such.
zackees 4y ago
PuppyTailWags 4y ago
My understanding is that autism is much more complex than "mild"/"severe". I know an autistic with a high-powered career who requires a full time minder because otherwise random shit will happen like frequent skin infections from not keeping hygiene. I know another autistic who can't hold a job but keeps her home in order and is fairly well organized and articulate.
Dracophoenix 4y ago
In your expertise, What separates the asociality that comes with mild/high functioning autism from that which comes from a coping mechanism for an unhappy childhood of someone who would otherwise be "normal"?
- subroutine 4y ago
  The distinction is subtle but I would say physiology vs. psychology. The former (probably) manifests from genomic, epigenetic, or early developmental biochem conditions; the latter arises from experience (e.g. manifests from stored explicit or implicit memories). Whether that matters is a different discussion. One area it might is treatment (for those who want it). If two similar disorders have wholly different etiologies, there is a good chance that a treatment that works well for one won't work at all for the other.
  - Dracophoenix 4y ago
    > One area it might is treatment (for those who want it). If two similar disorders have wholly different etiologies, there is a good chance that a treatment that works well for one won't work at all for the other. Which is a prelude to my second set of questions: How do you determine which is which in a diagnostic setting, where one normally has an n of 1 as an information provider? How do you determine the need or kind of treatment and whether such treatment is truly effective or little more than a band-aid for what would be complicated sociological issues? In what way does real or perceived agency (or lack thereof) have a part to play in asociality in relation to in-born or apparent autism itself and by what measure?
    - subroutine 4y ago
      I don't know what you mean by n=1. If someone goes to the hospital to get treatment for a rash, the doctor has methods to determine if the rash is from poison ivy, or an allergic reaction, or a burn, or eczema, even if those rashes all look visually similar, even with an N=1 patient. Because we have established diagnostic lab tests to assay for certain biomarkers. If your question is, how can we currently do this with Autism, the answer is, we cant. Yet. That is the whole point of performing basic research to understand the underlying etiology. If we stop doing this research, we'll never find out. Wrt. your second question, a lot of medications are simply "bandaids", and that is indeed a problem. Adderall doesn't cure ADHD, Zoloft doesn't cure depression, Levodopa doesn't cure Parkinson's. They are acceptable for now because they offer some relief from the symptoms, but do nothing to fix underlying problem. So for a concrete example Levodopa is given to both Parkinson's and Huntington's disease patients. However if we get to the point where we can reverse Huntington's disease using CRISPR to edit the trinucleotide repeat issue, should we expect this same method to work with Parkinsons patients just because the two disorders have similar symptoms? Absolutely not. Parkinsons has nothing to do with trinucleotide repeats. Which is good to know, so we don't attempt a highly invasive treatment on people who we know for a fact won't benefit from it (and may likely do more harm than good on them).
cjbgkagh 4y ago
What campaign to end genetic research into Autism? I must have missed it. Personally, as someone with hEDS, I wish there was more genetic research into it. Edit: found it, End Spectrum 10K. There seems to be a concern with negative eugenic screening which I kind of get. My ‘touch of autism’ seems to be a bit of a career advantage but I do worry about the possibility of having a more severely afflicted child. I think more good than harm will come from these studies.
- banannaise 4y ago
  A lot of autistic people (including me) see this as eugenics - the idea of genetic research is to prevent autistic people from being born, not to improve the lives of autistic people.
  - cjbgkagh 4y ago
    The gene mutations are going to be found eventually while searching for other things, so at best it’s delaying the inevitable. By identifying the gene mutations it can make treatments much easier to find as you can often see which exomes are effected and thus which proteins may be missing. Could give rise to an effective peptide treatment similar to an insulin injection.
    - wpietri 4y ago
      The knowledge may be inevitable, but the eugenics isn't. It's perfectly plausible that as a society we are not ready for knowledge yet. Look, for example at the plague of sex-selective abortion: https://en.wikipedia.org/wiki/Sex-selective_abortion https://en.wikipedia.org/wiki/Sex-selective_abortion It's perfectly possible that knowledge of and tests for, say, genes related to homosexuality would currently result in a huge eugenics campaign in many places. The same could well be true of all sorts of cognitive "deviance", which could be not only a moral horror, but cause long-term damage to the fate of the species.
      - cjbgkagh 4y ago
gunfighthacksaw 4y ago
I feel like this is an unintended consequence that the neurodivergent crowd overlooks. Those most able to advocate for social justice towards (and de-medicalization of) autism are going to be the highest functioning and most socially astute autistic people. The most ‘privileged’ and able to lead comfortable lives. Making the medical model of autism taboo is going to really negatively impact parents of the severely autistic kids who need constant supervision and access to medical professionals who take the condition seriously.
- mwigdahl 4y ago
  This is exactly correct. I suspect the next move is going to be to give the original Kanner syndrome autism a new name, as the terms "autism" and "autistic" are increasingly appropriated into a social identity group rather than a medical diagnosis.
Syntonicles 4y ago
Will you please go into more detail about the people you worked with, and how they presented? What sorts of deficits and behaviors did you see in the "mild" cases?
Auracle 4y ago
I realize it made sense scientifically to merge autism and Asperger’s, but socially it was a terrible thing. My severely autistic cousin killed their family dog with a knife when he was a teenager because it jumped on him and got him dirty. He’ll never be able to live on his own and his mother’s two divorces were in large part due to his existence. Mild autistic quirks may make life a little harder, but the impact is absolutely nothing like that.
- banannaise 4y ago
  A non-trivial part of the reason is that Asperger's is named for the Nazi doctor whose research was focused on drawing a line between "functional" autistics, and autistics who should be put to death. > My severely autistic cousin killed their family dog with a knife when he was a teenager because it jumped on him and got him dirty. This would seem to indicate a comorbidity; lethal violence is not a typical trait for autistic people, regardless of situation.
  - Auracle 4y ago
    They maybe should have renamed it then. He's severely mentally deficient and as far as I know has never been violent other than that incident. He picked up weight lifting a few years after that, which was pretty scary combined with what he'd done.

camtarn 4y ago

These things are not mutually exclusive. There are people who can speak articulately and campaign on Twitter some days, and have disabling meltdowns and total inability to manage life on other days. Like many things, the truth is probably somewhere in the middle: I have no doubt that there are also a lot of people who have taken one dubious questionnaire and self-diagnosed as autistic, and I also empathize with the parents of autistic children who seem light-years apart from autistic folk who can at least live mostly independently. I don't know what the future of autism research and funding needs to look like, but it feels like there still needs to be further change.

subroutine 4y ago
> These things are not mutually exclusive. There are people who can speak articulately and campaign on Twitter some days, and have disabling meltdowns and total inability to manage life on other days. That describes 90% of the population. The group of kids I worked with I'm sure have never used twitter. My main qualm is with the anti-research advocacy. Those that are advocating against basic research seem worried about losing their autism 'affiliation'. More research means scientists working towards defining physiological underpinnings, which would lead to more scientific diagnosis criteria (e.g. genomic markers, fMRI/DRI markers, etc.). And if they are found to not have those characteristics, well, what does that mean for them? Does it mean their issues aren't real? Of course not. But it certainly doesn't make sense to call them Autistic. Their disorder should be coined a different name.
- nicoburns 4y ago
  > have disabling meltdowns and total inability to manage life on other days. > That describes 90% of the population. It most definitely does not. I used to think it did too because it's my normal. But it turns out that most people manage to get on with life just fine on a consistent basis. Perhaps you have children in mind? But this applies to adults too. > More research means scientists working towards defining physiological underpinnings, which would lead to more scientific diagnosis criteria (e.g. genomic markers, fMRI/DRI markers, etc.). And if they are found to not have those characteristics, well, what does that mean for them? Does it mean their issues aren't real? Of course not. But it certainly doesn't make sense to call them Autistic. Their disorder should be coined a different name. I'm definitely in agreement with you that more research is called for and should be encouraged as much as possible. My strong suspicion is that "mild" and "severe" autism (and quite possibly related conditions like ADHD) will turn out to have to have a common physiological basis. I guess this belief (as lacking in evidence as we are at this point) is partly why I think it does make sense to classify everyone under the label "Autism".
  - philjohn 4y ago
    Yes - agree here. Father to two Autistic children, both of whom are high functioning, attend mainstream school, excel etc. The sheer burnout my son faces after dealing with social events is palpable - masking utterly drains him.
  - subroutine 4y ago
    If someone labels cats and dogs and sheep and goats and a bunch of other animals as "dogs" just because they want to be called dogs, and feed those labeled samples into a classifier for training, when given novel samples of species, the pretrained classifier will recognize ("diagnose") anything on 4 legs as a dog. I imagine the same will happen if we compile a genotype database that includes dna from everyone on the "spectrum" (i.e. the "case" dataset will be highly polluted with control samples, which will no doubt turn up null results). Don't get me wrong, I take your point. It's just that whatever is underpinning severe autism is subtle, and was already going to be difficult to tease out. Now I feel like it's perhaps impossible.
deleted 4y ago
[deleted]
cunidev 4y ago
> I have no doubt that there are also a lot of people who have taken one dubious questionnaire and self-diagnosed as autistic Not to drop names, but sounds like El$n Mu$k. As someone with close bonds with people diagnosed with "real" high-functioning autism, it is quite horrible to see random people (Mu$k claiming himself so[1], or mainstream newspapers attaching Asperger's to figures like Putin) being mislabeled as so for visibility, or because AS individuals have acquired this myth of being cool, quirky geniuses in popular culture. Truth be told (correct me if I am wrong), the most common high-functioning autism symptoms are also present in other syndromes (especially the social ones), and even in neurotypical people, that (as should be obvious) without a proper assessment, such quick speculations or self-assessment are usually garbage. [1] https://www.inc.com/minda-zetlin/elon-musk-aspergers-self-test-entrepreneurs-temple-grandin.html https://www.inc.com/minda-zetlin/elon-musk-aspergers-self-te..., ironic how the article starts suggesting readers to do an autism self-test

nicoburns 4y ago

> But it's been a great disservice to individuals with Autism 'proper' to be grouped (even if just by name) in a spectrum with folks with such mild issues. I feel like we need to both group and separate. We need to group because everyone across the spectrum has things in common, and a lot of the accommodations that "mild" and "severe" autistics need be similar (for example, needing quiet spaces), and we shouldn't dismiss these needs in those with "mild" autism because they're coping with things better than others. I feel like we also shouldn't dismiss how helpful the insight gained from autistics who are more easily able to communicate might be in determining appropriate care for those who are less able to communicate. We need to separate because some autistics have needs that others don't. And it is of course important that we recognise that and give the more disabling impairments the extra attention they deserve.

gehwartzen 4y ago
I agree with you in general. I think over time fields that are "fuzzy" with definitions, like psychology, will hopefully add additional layers of specificity to a number of neuro diseases/ailments/conditions. In the end if you took any condition out of the DSM each human probably falls some where along a spectrum for each one and the ultimate combination is what makes us "us" as individuals. I could certainly see autism be rated on a 1-10 scale of severity to provide additional clarity or each one of those ten points on the gradient receiving a new diagnostic name. Going further we could probably have a broader scale that includes severe autism on one side and severe empathy on the other. The empathetic traits aren't as well studied even though being severely empathetic can also have a host of social challenges.
- nicoburns 4y ago
  Please don't consider autism as opposite to empathy. Autistic individuals are often highly empathetic. It's just that they don't express it in the same way as neurotypical people and it can get lost in translation.
bashmelek 4y ago
I feel this too. People have different needs. I had an ex who despaired at the idea of marrying me because she didn’t want kids with autism. To me, I’m fine, my kids would be fine, and I don’t want any stigma or to be seen as defective. I just want the same respect anyone else gets, and an ounce of understanding. Other people, however, really struggle, either themselves or to help someone close to them. They don’t want their situation trivialized, and need effective help. Striking this balance will take a mindful culture, and the field can help much in guiding that, along with the other benefits they bring with research and interventions and such.

zackees 4y ago

PuppyTailWags 4y ago

My understanding is that autism is much more complex than "mild"/"severe". I know an autistic with a high-powered career who requires a full time minder because otherwise random shit will happen like frequent skin infections from not keeping hygiene. I know another autistic who can't hold a job but keeps her home in order and is fairly well organized and articulate.

Dracophoenix 4y ago

In your expertise, What separates the asociality that comes with mild/high functioning autism from that which comes from a coping mechanism for an unhappy childhood of someone who would otherwise be "normal"?

subroutine 4y ago
The distinction is subtle but I would say physiology vs. psychology. The former (probably) manifests from genomic, epigenetic, or early developmental biochem conditions; the latter arises from experience (e.g. manifests from stored explicit or implicit memories). Whether that matters is a different discussion. One area it might is treatment (for those who want it). If two similar disorders have wholly different etiologies, there is a good chance that a treatment that works well for one won't work at all for the other.
- Dracophoenix 4y ago
  > One area it might is treatment (for those who want it). If two similar disorders have wholly different etiologies, there is a good chance that a treatment that works well for one won't work at all for the other. Which is a prelude to my second set of questions: How do you determine which is which in a diagnostic setting, where one normally has an n of 1 as an information provider? How do you determine the need or kind of treatment and whether such treatment is truly effective or little more than a band-aid for what would be complicated sociological issues? In what way does real or perceived agency (or lack thereof) have a part to play in asociality in relation to in-born or apparent autism itself and by what measure?
  - subroutine 4y ago
    I don't know what you mean by n=1. If someone goes to the hospital to get treatment for a rash, the doctor has methods to determine if the rash is from poison ivy, or an allergic reaction, or a burn, or eczema, even if those rashes all look visually similar, even with an N=1 patient. Because we have established diagnostic lab tests to assay for certain biomarkers. If your question is, how can we currently do this with Autism, the answer is, we cant. Yet. That is the whole point of performing basic research to understand the underlying etiology. If we stop doing this research, we'll never find out. Wrt. your second question, a lot of medications are simply "bandaids", and that is indeed a problem. Adderall doesn't cure ADHD, Zoloft doesn't cure depression, Levodopa doesn't cure Parkinson's. They are acceptable for now because they offer some relief from the symptoms, but do nothing to fix underlying problem. So for a concrete example Levodopa is given to both Parkinson's and Huntington's disease patients. However if we get to the point where we can reverse Huntington's disease using CRISPR to edit the trinucleotide repeat issue, should we expect this same method to work with Parkinsons patients just because the two disorders have similar symptoms? Absolutely not. Parkinsons has nothing to do with trinucleotide repeats. Which is good to know, so we don't attempt a highly invasive treatment on people who we know for a fact won't benefit from it (and may likely do more harm than good on them).

cjbgkagh 4y ago

What campaign to end genetic research into Autism? I must have missed it. Personally, as someone with hEDS, I wish there was more genetic research into it. Edit: found it, End Spectrum 10K. There seems to be a concern with negative eugenic screening which I kind of get. My ‘touch of autism’ seems to be a bit of a career advantage but I do worry about the possibility of having a more severely afflicted child. I think more good than harm will come from these studies.

banannaise 4y ago
A lot of autistic people (including me) see this as eugenics - the idea of genetic research is to prevent autistic people from being born, not to improve the lives of autistic people.
- cjbgkagh 4y ago
  The gene mutations are going to be found eventually while searching for other things, so at best it’s delaying the inevitable. By identifying the gene mutations it can make treatments much easier to find as you can often see which exomes are effected and thus which proteins may be missing. Could give rise to an effective peptide treatment similar to an insulin injection.
  - wpietri 4y ago
    The knowledge may be inevitable, but the eugenics isn't. It's perfectly plausible that as a society we are not ready for knowledge yet. Look, for example at the plague of sex-selective abortion: https://en.wikipedia.org/wiki/Sex-selective_abortion https://en.wikipedia.org/wiki/Sex-selective_abortion It's perfectly possible that knowledge of and tests for, say, genes related to homosexuality would currently result in a huge eugenics campaign in many places. The same could well be true of all sorts of cognitive "deviance", which could be not only a moral horror, but cause long-term damage to the fate of the species.
    - cjbgkagh 4y ago

gunfighthacksaw 4y ago

I feel like this is an unintended consequence that the neurodivergent crowd overlooks. Those most able to advocate for social justice towards (and de-medicalization of) autism are going to be the highest functioning and most socially astute autistic people. The most ‘privileged’ and able to lead comfortable lives. Making the medical model of autism taboo is going to really negatively impact parents of the severely autistic kids who need constant supervision and access to medical professionals who take the condition seriously.

mwigdahl 4y ago
This is exactly correct. I suspect the next move is going to be to give the original Kanner syndrome autism a new name, as the terms "autism" and "autistic" are increasingly appropriated into a social identity group rather than a medical diagnosis.

Syntonicles 4y ago

Will you please go into more detail about the people you worked with, and how they presented? What sorts of deficits and behaviors did you see in the "mild" cases?

Auracle 4y ago

I realize it made sense scientifically to merge autism and Asperger’s, but socially it was a terrible thing. My severely autistic cousin killed their family dog with a knife when he was a teenager because it jumped on him and got him dirty. He’ll never be able to live on his own and his mother’s two divorces were in large part due to his existence. Mild autistic quirks may make life a little harder, but the impact is absolutely nothing like that.

banannaise 4y ago
A non-trivial part of the reason is that Asperger's is named for the Nazi doctor whose research was focused on drawing a line between "functional" autistics, and autistics who should be put to death. > My severely autistic cousin killed their family dog with a knife when he was a teenager because it jumped on him and got him dirty. This would seem to indicate a comorbidity; lethal violence is not a typical trait for autistic people, regardless of situation.
- Auracle 4y ago
  They maybe should have renamed it then. He's severely mentally deficient and as far as I know has never been violent other than that incident. He picked up weight lifting a few years after that, which was pretty scary combined with what he'd done.