Thread by @AutSciPerson

I think non-autistic people think we're attacking their reputation when we speak out about issues,

when what we're actually doing is speaking out against pathologization, systemic discrimination, and lack of representation of autistic people even among NTs who claim to help us.

I honestly don't think I have ever heard a non-autistic researcher or professional refer to ONLY autistic people.

It is nearly always and forever "autistic people and their families."

Why is autism the only place where the non-autistic people matter just as much? #Spectrum10K

Imagine a panel and they said "this panel is about women! We will have women and their families on the panel to talk about what they need the most!"

or

"We will have women and men on the panel to talk about what they need the most!"

Wouldn't people be like.. what???

And the worst part is that

autistic parents exist!! They could specifically recruit autistic parents!

But it's never about autistic parents.

It's about the non-autistic people adjacent to autistic people. The non-autistic people "affected by autism." (They're not).

It's not enough anymore to just -include- us.

It's not enough to throw in less than majority autistic people on an advisory panel.

It's not enough to say "we'll do that" after autistic people work for free to raise serious ethical concerns about this study. It's not enough.

If they had said they would make a data sharing committee with ONLY autistic people I at least would have said they were trying. Or at least had hope.

Autistic people "and their families?"

Just no.

That means anything. There is no guarantee for representation there.

Autistic people are not only children.
Autistic people should not need neurotypical approve to make decisions about our lives.
Autistic people do not need our family members to decide.

It should be in autistic people's hands only.

Any marginalized group would have no less.