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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

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 5y 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 5y 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?

mwigdahl 5y 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 5y 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?