Note For Anyone Writing About Me

I got blogger working again using a different proxy. It'd still be nice if people liked my Facebook, but you don't need to look at it to get posts anymore.
For anyone who wants to write about me
I am an Autistic person. I am not a person with autism. Don't call me one.
My name is Alyssa, I'm a triple major in mathematics, mechanical engineering, and Chinese. I'm currently studying abroad in Tianjin. I have an About. I'm Autistic. I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Wednesday, January 23, 2013

Red Flags

Trigger warning: Discussions of silencing, presumptions of incompetence

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. (Calling folks "people with autism" if they do not have a preference is OK, and you should respect the preference of those who prefer to call themselves "people with autism.)
  • 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: take a look at what kinds of things Alex Plank used to write, then at what he writes now.
  • Association with Generation Rescue- um, yeah. Biomed/MMS/chelation/inviting Andrew Wakefield to present at their conferences. Not good. AutismOne is the Generation Rescue conference, where they promoted an autism treatment that, scientifically speaking, is bleach up the butt. (That's what MMS is, by the way.)
  • Prominently featuring individual testimonials, particularly those of parents who think their kids are now recovered from autism, is not a good sign. It is a sign that people don't understand how autism or science works. They probably also don't understand statistics. If they do understand any of the above, then they are counting on you not understanding them.
  • This requires a bit more work, but if all the research they have is written by their own doctors and/or not peer reviewed, citing things that only tangentially fail to refute what they say it supports, it's probably quackery. 
  • "Proven to work" is also a quackery sign. Science works with "Does better than placebo to X degree of certainty," not with absolutes. Placebo is needed because placebo effect and because autistic people develop with time. Funny how that works.
There are, of course, going to be other red flags, but these are some of the big ones. Some of them are sufficiently bad that my advice is to run for it when you see them. Some of them you might be able to engage with, but be careful. My personal policy? If your Facebook page likes Autism Speaks, Generation Rescue, or obvious close affiliates, Yes, That Too isn't going to like your page. Most of these red flags are enough that Yes, That Too won't like your page.

8 comments:

  1. I agree with most of this post but for one point, and I know that it is controversial, the puzzle piece as a symbol for autism awareness. I think of it as trying to find where I, and my kids, fit into a confusing world. The concept that we are all equally important pieces in the puzzle, we just have to find a way to find our place. That said, I don't know that those other organizations (I believe you have already mentioned) really get the concept of awareness and equality. Trying to cure someone of their neurology? I think they need some treatment for delusional thinking.

    ReplyDelete
    Replies
    1. It's a reasonable way to think about it, just be aware: LOTS of Autistic adults are still gonna take is as a red flag because that's not what it usually means. Most of the Autistics who dislike it are going the "find something else" route instead of the "reclaim" route.

      Delete
    2. I can try to squint past the puzzle piece because so many people don't know better yet, or now, I just learned, have re-cast new meanings for it, but I am working to eradicate it...The bright side of being a cool person wearing a puzzle piece is that you get to talk to Autistics who will try to talk you out of it...so I guess it's a conversation-piece.

      Delete
    3. I work with autistic children and the puzzle piece to me, is the puzzle of figuring out how to connect with them by finding out what they love. Every single child that I work with is different, which is part of the puzzle because every single kid has a different thing that is meaningful to them. Autism IS sort of a puzzle. Do I want to "cure" autism? Absolutely not. Without those incredible brains, the world would be a very dysfunctional place. However a lot of time, I see many things that are dysfunctional with the kids that I work with. Preschoolers who can't dress themselves, or smear fecal matter all over the room. Kids that are so overwhelmed by stimuli that all they can do is shut off or melt down. Kids that are so hypersensitive to touch that they can't tolerate a hug from their mother... This is also the puzzle piece for me... Trying to figure out where I can intervene in ones life for them to truly and fully participate in meaningful and useful tasks. I am an autism advocate and preaching autism acceptance is very important to me. I do not want autistic individuals to think I am trying to degrade them or try to fix them, but to me, the puzzle piece reminds me of my own puzzle to help these kids learn how to cope with the world and be as functional and independent as possible!

      Delete
  2. A lot of people see the puzzle piece as meaning something negative: Autistic people are "puzzling" (whatever that is supposed to mean, isn't every human being a mystery to everyone else?). Or that we're broken, like a puzzle with one of its pieces missing, and we need "fixing". I see it another way: You can't finish a puzzle if one piece is missing. You can't just throw out one piece because it doesn't appeal to you, or you don't understand how it fits into the whole. And you can't alter it to make it fit better. Its shape and color is unique, and can't be changed. Autistic people should never be counted out, because each autistic person has unique abilities and gifts to share with the world.

    ReplyDelete
  3. It's not the single puzzle pieces I dislike the most (though it does have over tones of fitting in and/or disappearing) but the puzzle with a missing piece. To me, it implies that autistic people are "not all there". Don't like that one bit.

    ReplyDelete
  4. Changed my mind: reclaim! occupy! More on this later...to be continued :D

    ReplyDelete
  5. One I've noticed: Spelling "stimming" with an e. Everyone I've run into online who spells it "stemming" is very pro-forced-normalization. I'm not sure if it's one person with a lot of socks or if it's many people from one website where that misspelling is common, since I avoid on principle sites that implicitly or explicitly dehumanize people. Seeing that stuff isn't worth it to satisfy my curiosity.

    ReplyDelete

I reserve the right to delete for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things. As long as we stay within those ranges, discussion is AWESOME.