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scientific ableism, autism related 

I'm the main organizer when it comes to communication and tech of our local autistic community. So I get a lot of e-mails.

It's mostly autistic people or relatives looking for resources and help or who want to join our meetings.

And then there are researchers of every possible kind and level.

I've been doing this for about 9 years now and I can tell you one thing. They NEVER approach us before they start their projects. They never even waste a single thought about participation or what their research could give back to the community.

They always want one thing: access to research subjects. (I prefer objects, actually. It's just more honest).

There was only one project in all those years where autistic researchers and community were involved from the start and they were actually looking into something that could benefit us and not only their neurotypical curiosity.

Now I got another request. It's about "Dating" and "relationships" and it's just awful. They are not even doing the science part right in this one. So yes, I get protective. I only have to decide if I want to confront them or just ignore it because it's not worth my time and energy. I don't have much of that anyway.

Just stop studying us like that for fucks sake

scientific ableism, autism related 

Aaand the one good study people just came back to me with first results and are asking for expert review / discussion by autistic people before going forward. It is possible to do a good job, it's not that hard!

scientific ableism, autism related 

@jules Uuuuff. :/

scientific ableism, autism related 

@jules ugh, terrible :( :chick_trash:

just ignore it, don't waste your energy on it.

scientific ableism, autism related 

@Stoori You're right. I should just ignore it. I'm sure it would not change anything if I did reply...

scientific ableism, autism related 

@jules Maybe just send them a link to this post (or a copy if you don't want them on your profile) and tell them you aren't interested in any further messages from them? Hopefully they'll learn to reflect their behavior at least a little bit

scientific ableism, autism related 

@silentium I decided to ignore, but thanks.

scientific ableism, autism related 

@jules I read a thesis by a researcher who did involve autistic people from the start, and at every step of her project.
…She was diagnosed while working on it.

scientific ableism, autism related 

@kincat nice 😁

scientific ableism, autism related 

@jules thank you for what you do. It's disheartening to know how much dangerous bias autism researchers still operate under.

scientific ableism, autism related 

@jules I spent all my parenting years protecting my amazing, quirky, sensitive autistic son from a world that insisted I do otherwise. I knew in my soul he needed home to be a safe & predictable place. I didn't realize until later, that what helped him also helped me. Neither of us are what researchers would think of as autistic. And you know what? Fuck them & their ablest bullshit. Kiddo is 27 now & living a life that works for him.

scientific ableism, autism related 

@jules yay! 🎉

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Rage.love

Generalist Hometown instance with a strong focus on community standards. No TERF, no SWERF, no Nazi, no Centrist.