rvallee
Senior Member (Voting Rights)
Interesting video with lots of overlap with us, although some of it is the exact opposite. I have been noticing that, generally speaking, things are just as dysfunctional in autism research in terms of conflict between perception and reality.
It's the exact same story of not listening to patients, except the main difference with us is that the conflict is somewhat starting to be recognized, whereas we are still at the totalitarian phase of imposing control and aggressively dismissing all opposition.
What's especially interesting is that the same issue is happening as with us, but in complete reverse: a research community focused almost exclusively on understanding the biology of autism, so they can fix it, whereas the patients want clinical and mental health support. Completely upside down.
Very notable: there has been a widely publicized genetic study that the patient community stopped through a boycott, as the patient community thinks it will be used to identify and terminate pregnancies, in effect ending autism.
It shows more than anything a medical community completely at odds with reality, doing things that interest and motivate them, rather than what the patients need. I see much of the same criticism everywhere, especially the horrible backstory and how it was never properly addressed. There is no smooth transition away from basically torture and mass disrespect.
In order to get the healthcare we need, patients will need to simply do it for ourselves, to move away from the top-down authoritarian control and towards an accountable and representative model, about as radical a change as going from hereditary monarchy to a free democracy, and facing the same problem with that change: the totalitarian monarchy has to agree to those changes.
It's the exact same story of not listening to patients, except the main difference with us is that the conflict is somewhat starting to be recognized, whereas we are still at the totalitarian phase of imposing control and aggressively dismissing all opposition.
What's especially interesting is that the same issue is happening as with us, but in complete reverse: a research community focused almost exclusively on understanding the biology of autism, so they can fix it, whereas the patients want clinical and mental health support. Completely upside down.
Very notable: there has been a widely publicized genetic study that the patient community stopped through a boycott, as the patient community thinks it will be used to identify and terminate pregnancies, in effect ending autism.
It shows more than anything a medical community completely at odds with reality, doing things that interest and motivate them, rather than what the patients need. I see much of the same criticism everywhere, especially the horrible backstory and how it was never properly addressed. There is no smooth transition away from basically torture and mass disrespect.
In order to get the healthcare we need, patients will need to simply do it for ourselves, to move away from the top-down authoritarian control and towards an accountable and representative model, about as radical a change as going from hereditary monarchy to a free democracy, and facing the same problem with that change: the totalitarian monarchy has to agree to those changes.