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> 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

> 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.
  - rcthompson 4y ago
    Case/control is not the only kind of analysis you can do here. You could define a numerical scale describing someone's degree of "autistic-ness" and train a classifier on that instead of a binary categorization, for example. Obviously there are challenges in doing so, just as there are with the binary case. But if a continuous scale turns out to be a better match for the underlying phenomenon, then obviously it's worth modeling in that way.
  - nicoburns 4y ago
    > the "case" dataset will be highly polluted with control samples, which will no doubt turn up null results You seem to be assuming the answer to the research here. It's true that polluting the "case" dataset with control samples will make it hard to find patterns/results. But polluting the control dataset with "case" samples causes exactly the same problem. I would suggest that we'll need lots of studies with different groupings > a bunch of other animals as "dogs" just because they want to be called dogs I am not suggesting that we consider people autistic because they want to be autistic. I am suggesting that a lot of the people with "mild" autism seem to have very similar symptoms and subjective experiences to those with "severe" autism (even though it presents very differently). And that it is not at all obvious that the underlying cause is different. The analogy I would use is that of a noise in the environment. Suppose there is a high pitched whining noise, but it's fairly quiet. That would likely be annoying, but wouldn't majorly affect you. Now suppose the it's louder, akin to a loud concert. That would probably be ok for a while or some of the time, but after a while it would start to get to you and might make you irritable or more tired. Now suppose the noise was really loud, like standing next to a jet engine loud. This would be utterly intolerable and completely debilitating. The cause of the problem in each of these cases is similar, the difference is just the degree of loudness. And different profiles of Autism could well be similar, having a similar underlying cause despite wildly different presentations. Given that there is evidence that one of the main aspects of Autism is differences in sensory processing this analogy might even be quite literal.
mikepurvis 4y ago
> Their disorder should be coined a different name. But I guess part of the concern may be that they’ll be told there’s no disorder at all. Which could be liberating and empowering for some people, but potentially deeply invalidating for others.
to11mtm 4y ago
I'll give my devils advocate statement. As a background, I was not diagnosed until I was in my early 30s. That was after years of bouncing from doctor to doctor, every one before that giving a different diagnosis with a treatment that didn't work. None of the previous doctors even touched on ASD/ADHD. > 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. No, but I think the fear for some, is the question of "Well WTF happens then?" Diagnosis and treatment of comorbidities (ADHD + social anxiety) let me go from being in a dead end hourly job to a person who has a moderately successful career, has been able to make impactful contributions to open source, and be able to mostly function as an adult. I'm not against research, but if there is a different thing going on with some people I don't want to see them forgotten.
wpietri 4y ago
Do you have some examples of your kind of "anti-research advocacy"? Because the concerns I see are nothing like that. What I see is people being concerned about people wanting to "end autism" when a lot of people diagnosed as autism are not interested in being ended. Which I think is a valid complaint. There's an endemic fetishization of "normal" that ends up causing a lot of harm [1], ranging from a lot of unnecessary abuse to medicalization [2] of deviance to outright eugenics. I could well believe that a lot of researchers and a lot of research are tainted with that. And I think it's ultimately the job of researchers to both make sure they're not part of it and be clear that they aren't. [1] described about pilots and cockpits here: https://www.thestar.com/news/insight/2016/01/16/when-us-air-force-discovered-the-flaw-of-averages.html https://www.thestar.com/news/insight/2016/01/16/when-us-air-... [2] https://wiki.ubc.ca/The_Process_of_Medicalization_of_Deviance_Among_Minority_Groups_in_West https://wiki.ubc.ca/The_Process_of_Medicalization_of_Devianc...
- mwigdahl 4y ago
  This is exactly the redefinition and recentering process that infuriates me as the parent of a severely autistic child. The "autism" that people are self-advocating against ending and which dominates media discourse is a world of difference away from the totally disabling condition my daughter has. Yet the connotations of the term "autism" have been hijacked away from her by media attention focused on large numbers of high-functioning and self-diagnosed people agitating for their own agenda. Yes, a lot of neuroatypicals are perfectly happy with their current situations -- as long as they receive accommodations at school and at work and online based on their diagnosis. Their _medical_ diagnosis. I am not for a minute trying to advocate that they be forced to take treatments they don't want. What I do object to, strenuously, is the diversion of resources away from severely impaired people who can barely communicate, let alone advocate for themselves online. These people _do_ have a true medical condition, are suffering, and have the right to the support of the medical and research community just as much as the less impaired group has the right to forego that support.
  - wpietri 4y ago
    You write this in a tone of extreme contradiction. But I don't think I actually said anything that you are contradicting. Did you mean to reply somewhere else?

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.
- rcthompson 4y ago
  Case/control is not the only kind of analysis you can do here. You could define a numerical scale describing someone's degree of "autistic-ness" and train a classifier on that instead of a binary categorization, for example. Obviously there are challenges in doing so, just as there are with the binary case. But if a continuous scale turns out to be a better match for the underlying phenomenon, then obviously it's worth modeling in that way.
- nicoburns 4y ago
  > the "case" dataset will be highly polluted with control samples, which will no doubt turn up null results You seem to be assuming the answer to the research here. It's true that polluting the "case" dataset with control samples will make it hard to find patterns/results. But polluting the control dataset with "case" samples causes exactly the same problem. I would suggest that we'll need lots of studies with different groupings > a bunch of other animals as "dogs" just because they want to be called dogs I am not suggesting that we consider people autistic because they want to be autistic. I am suggesting that a lot of the people with "mild" autism seem to have very similar symptoms and subjective experiences to those with "severe" autism (even though it presents very differently). And that it is not at all obvious that the underlying cause is different. The analogy I would use is that of a noise in the environment. Suppose there is a high pitched whining noise, but it's fairly quiet. That would likely be annoying, but wouldn't majorly affect you. Now suppose the it's louder, akin to a loud concert. That would probably be ok for a while or some of the time, but after a while it would start to get to you and might make you irritable or more tired. Now suppose the noise was really loud, like standing next to a jet engine loud. This would be utterly intolerable and completely debilitating. The cause of the problem in each of these cases is similar, the difference is just the degree of loudness. And different profiles of Autism could well be similar, having a similar underlying cause despite wildly different presentations. Given that there is evidence that one of the main aspects of Autism is differences in sensory processing this analogy might even be quite literal.

mikepurvis 4y ago

> Their disorder should be coined a different name. But I guess part of the concern may be that they’ll be told there’s no disorder at all. Which could be liberating and empowering for some people, but potentially deeply invalidating for others.

to11mtm 4y ago

I'll give my devils advocate statement. As a background, I was not diagnosed until I was in my early 30s. That was after years of bouncing from doctor to doctor, every one before that giving a different diagnosis with a treatment that didn't work. None of the previous doctors even touched on ASD/ADHD. > 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. No, but I think the fear for some, is the question of "Well WTF happens then?" Diagnosis and treatment of comorbidities (ADHD + social anxiety) let me go from being in a dead end hourly job to a person who has a moderately successful career, has been able to make impactful contributions to open source, and be able to mostly function as an adult. I'm not against research, but if there is a different thing going on with some people I don't want to see them forgotten.

wpietri 4y ago

Do you have some examples of your kind of "anti-research advocacy"? Because the concerns I see are nothing like that. What I see is people being concerned about people wanting to "end autism" when a lot of people diagnosed as autism are not interested in being ended. Which I think is a valid complaint. There's an endemic fetishization of "normal" that ends up causing a lot of harm [1], ranging from a lot of unnecessary abuse to medicalization [2] of deviance to outright eugenics. I could well believe that a lot of researchers and a lot of research are tainted with that. And I think it's ultimately the job of researchers to both make sure they're not part of it and be clear that they aren't. [1] described about pilots and cockpits here: https://www.thestar.com/news/insight/2016/01/16/when-us-air-force-discovered-the-flaw-of-averages.html https://www.thestar.com/news/insight/2016/01/16/when-us-air-... [2] https://wiki.ubc.ca/The_Process_of_Medicalization_of_Deviance_Among_Minority_Groups_in_West https://wiki.ubc.ca/The_Process_of_Medicalization_of_Devianc...

mwigdahl 4y ago
This is exactly the redefinition and recentering process that infuriates me as the parent of a severely autistic child. The "autism" that people are self-advocating against ending and which dominates media discourse is a world of difference away from the totally disabling condition my daughter has. Yet the connotations of the term "autism" have been hijacked away from her by media attention focused on large numbers of high-functioning and self-diagnosed people agitating for their own agenda. Yes, a lot of neuroatypicals are perfectly happy with their current situations -- as long as they receive accommodations at school and at work and online based on their diagnosis. Their _medical_ diagnosis. I am not for a minute trying to advocate that they be forced to take treatments they don't want. What I do object to, strenuously, is the diversion of resources away from severely impaired people who can barely communicate, let alone advocate for themselves online. These people _do_ have a true medical condition, are suffering, and have the right to the support of the medical and research community just as much as the less impaired group has the right to forego that support.
- wpietri 4y ago
  You write this in a tone of extreme contradiction. But I don't think I actually said anything that you are contradicting. Did you mean to reply somewhere else?