Many autism organizations claim to be doing good. Many of them even think they are.
Unfortunately, many of them have some really harmful ideas about autism at the core of what they are advocating for, and that is a huge problem. It's those harmful basic ideas that lead to things like silencing of Autistic people on the basis of them being able to communicate, pushing compliance as the highest goal for Autistic people, presumptions of incompetence, and those sorts of things. It's a problem.
And it can be sneaky, very sneaky. Sometimes you go in thinking you can change them and instead they change you. Sometimes you don't realize what's at the bottom of it and therefore don't even know that an organization is problematic until you have absorbed many of their problematic ideas and now find yourself faced with the challenge of purging those ideas in order to help you or your child navigate the world without having to pretend to be something they aren't.
To help you avoid the second of these, here is a list of red flags for organizations. If you see these, be very wary of whatever organization is putting them out because they probably have more problematic stuff going on.
- Puzzle pieces, especially the same piece Autism Speaks uses. It reinforces the idea that autism is mysterious and puzzling, which tends to go with presumptions of incompetence.
- Puzzles with missing pieces- the autistic person is the missing piece? Understanding of autism is the missing piece? I dunno, something is missing a piece and it's usually us, so it falls in with the Autistic people are somehow broken.
- No Autistic writers on their blogs. Even if it's writers with autism who are not self-loathing people with autism, there is a chance that they are OK. But if no one writing for them is Autistic, you need to think about why. Either they are so problematic that no one Autistic will go near them or they don't want to hear from Autistics. Very few Autistic writers for their articles/blogs is a similar issue.
- Person-first crusading. If they refer to specific Autistics who have expressed a desire to be referred to as Autistics or Autistic people as people with autism, run. They have no respect for self-determination if they can't even get that one right.
- Mental age. It's creepy, it's nearly useless, it's used as a tool to deny self-determination and presume incompetence, and if you've got a kid who doesn't speak, this one is "run for it" level bad because you of all people need to not go there. It's toxic for anyone, but if you are directly responsible for someone who does not speak, you really need to stay away from mental age.
- Any reference to fighting/beating autism. Even if they recognize that autism can't be cured, if they're talking about beating/overcoming it, that means they see autism as something that is damaged and needs fixing. Problem, much?
- Cure/recovery as a goal- autism as broken, medical model.
- Cure/recovery as something possible- BIOMED ALERT. This group almost certainly thinks that abusing a kid in order to make them not be autistic anymore is acceptable. Run for it, seriously.
- Association with Autism Speaks- they are problematic, big time, and they are very good at corrupting others with their problematicness. Even pro-neurodiversity Autistics.
- Association with Generation Rescue- um, yeah. Biomed/MMS/chelation/inviting Andrew Wakefield to present at their conferences. Not good.