"One of the most bizarre paradoxes in autism research is that most of the research is causation/cure oriented, ostensibly for the benefit of those who are "severe"/have co-occurring intellectual disability.

"But those aren't the people who get recruited for the studies.

"To be clear: I don't think causation/cure are good or useful objectives.

"It's just silly to be told that I don't understand the need for the research because I'm not "severe" enough, while the same people try to get me to donate my cheek swabs, brain tissue, and time.

"Really, what these researchers want is subjects that don't require any special effort to get data from, but who also won't talk back or have opinions about goals and values.

"Miss me with that. #LDTChat" @slooterman

"Often the most ugly research is perpetrated on people with LDs though, eg the proposed ECT study which is only recruiting people under guardianship (presumably because they know no one would ever knowingly consent)" @24shaz

"Yes. I also suspect that, beyond funding distribution, this is one reason studies are still disproportionately focused on children. Children don't really get to make their own decisions, whether they have ID/LD or not." @slooterman

"Aye, indeed." @24shaz

"The same critique can be made of people who seek perspectives of #ActuallyAutistic people on Twitter. These surveys are self selecting if the input of parents is not welcome and valued." @EricNJager

"This would be a legitimate argument if Twitter actually mattered in any substantive, material way. Policy gets set by research, not internet opinions. Just block people you don’t want to listen to and move on with your life." @slooterman

"This is a good point. I CONSTANTLY see people pushing back against autistic adults by saying they 'aren't really autistic' and 'they can't understand because THEIR child is sooo severely autistic, it's totally different.' yet they're not even...studying what would work for them?" @laurawritesit

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