I'm going to disagree here. Experts by experience are frequently used in things like the NHS. There is also a huge amount of criticism of autism charities being run by non-autistics and not representing us. I'm currently involved in a Scottish Government pilot scheme which uses autistic people to run the education and support sessions.It's this idea that "lived experience" is more important than expertise. The truth is that it is and it isn't. Take another situation: yes, we should listen to cancer patients talking about their experience, but not at the expense of ignoring oncologists.
It's particularly bad when the "lived experience" is coming from someone who self-diagnosed with the help of Dr Google, which a great many of these Twitter types tend to be. That's when we start getting "I knew I was autistic because I don't like mushrooms" and all this dangerous nonsense.
ETA: comments on that autism post:
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I don't know whether to laugh or cry at "all the expertise you've gained on Twitter".
It doesn't mean you rubbish people who are qualified and work in the field but a lot of us have been told what to do our whole lives and want to advocate for ourselves.
I think the oncologist analogy is different since that is a very specialist field.