Hey #actuallyAutistic folks we have a lot to learn from @patientled. These are folks who seized control of research priorities back from insurance companies and doctors who weren’t helping them with #longcovid and #MECFS.
https://twitter.com/viriditax/status/1595900677313552386
We aren’t patients because autism isn’t a disease — but when it comes to autism research our *only* role is as subjects.
We are often left off lists of stakeholders.
We are not seen as people by those who determine what is true, medically speaking.
So what do we do?
We are often left off lists of stakeholders.
We are not seen as people by those who determine what is true, medically speaking.
So what do we do?
We develop Subject Led Research by following in the footsteps of @patientled and those whose work they built on.
We create studies and surveys, validate them with an IRB and set about creating the data we need.
No more begging for scraps.
We create studies and surveys, validate them with an IRB and set about creating the data we need.
No more begging for scraps.
Having watched @patientled grow up these past few years I’ve learned a ton, and I have a lot of thoughts about this to share.
More threads to come.
More threads to come.
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