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.

Blogging Together For Autism

Trigger Warning: Some dangerous cure attempts are mentioned in passing. So are organizations that support them.
I was invited to join this group on Facebook. Twice, actually. Once as a comment here, and once as a message to my page. (Yes, I have a Facebook page. It's here if you care. Or if you don't care. Whatever.) I mean, you can't actually join a group with a page, and I'm only semi-out on Facebook, and I'm not trying to make the fact that I'm autistic google-able with my real name, so there are logistical difficulties with that, but I lurk. And someone actually shared my stuff on a couple occasions, which is cool. (My overall impression is that these are good, well intentioned parents. That doesn't mean everyone is perfect, since, you know, there is a LOT of misinformation out there, some of it harmful. At the very least, no one is arguing that bleach enemas are a good idea or that vaccines gave me autism. I mostly get the impression that people just don't know how awful Autism Speaks, Jenny McCarthy, Age of Autism, Generation Rescue, etc really are for autistic people, not that they actually think that being autistic is inherently a huge tragedy that means their kids will never do anything ever (they can.))
So, I've read some of the posts and some of the conversations. I'll admit that the story that mentioned Jenny McCarthy talking about her son made me cringe, since, you know, JENNY MCCARTHY. She did found Generation Rescue, after all, and they're the one's who run that Autism One conference where they talked about bleach enemas as a cure for autism. (Yes, I will be talking about the bleach enemas thing in my paper tracing cure problems-that one is a very good example of "quack cures that can cause permanent damage." And no one seems to be quite as strongly anti-cure as I am, but then, it's not their brains that could get forcibly re-wired, at least, not in the cases of the parents. (I think there are a couple actually autistic people in the group? But the only one I know of links to Autism Speaks on her page, which kind of scares me. Because, you know, Autism Speaks is focused on finding a cure that autistic people seem to mostly not want. Plus they compare autism to diseases that actually kill people and threaten suit against autistic minors who made legally protected parodies of their site and use the works of autistic people without permission, then getting the attribution wrong.
Anyways, no one seems as strongly anti-cure as I am, but then, it's not as much that I'm anti-cure as that I'm anti-"finding a cure before getting society to a point where autistic people would actually get the choice of becoming neurotypical or staying autistic," anti-"ignoring what autistic people tell you would actually help," and anti-"parents being able to make the decision to cure or not for their kids." Which in modern Earth, is pretty functionally anti-cure, so I usually just go with that. However, if an autistic person (NOT the person's mother/father/gaurdian) decided that being not autistic was the way to go for that person's own life, I'll not argue. Heck, get society to the point where it would be truly voluntary, and you would have a shot at getting me to participate in any of the relevant studies that didn't carry the risk of an accidental cure. Some of the not being as strongly anti-cure is based in functioning arguments, which is always difficult to see, but then, it's pretty close to just the self-advocates who argue against functioning labels with any consistency. You'll occasionally see parents joining that one, but not that often.
All this said, I'm not seeing any of the "I'm abusing my kid!" red flags or anything that would trigger me. No one's come from there to tell me that I can't possibly understand their position or called me too high functioning to understand. (I understand fine. Functioning labels are fail. Extreme academic giftedness gets all the credit for people not having put me in special classes, and yes, they tried. I stim a lot. And, you know, you can't actually tell functioning levels over the internet. Plus "high functioning" might really mean "can pass for just a smart weird person unless you see the backstory problems" anyways.) The "worst" I've gotten is an anonymous comment from someone who pretty clearly just didn't know about all the REALLY BAD THINGS Autism Speaks does and thought it was just an advocacy group, and I don't even have evidence to suggest that the comment is related to the group. That kind of comment is just a part of being a blog that talks about autism a lot and isn't nice to Autism Speaks. And, you know, all the blogs I've seen have names changed/last names left out/sometimes both, with the exception of an adult talking about her own stuff, not kids, and she can make her own decisions about disclosing and not. That's kind of important, since having a disability disclosed for you can be pretty problematic when looking for jobs comes around, and yes, autistic people do sometimes look for jobs. (My disclosure status: Every in-person employer could figure it out, but none of them have known while I worked for them unless they figured it out themselves. I never did an official disclosure with my online employer, but it came up in passing and one of the administrators therefore knows. This is only possible because I don't need any accommodations, but waiting to disclose until after the job offer is a pretty common thing to do.)
So, I have now said many things. It's actually nice to get some parent perspectives that aren't going "OMG my kid is a tragedy!" and trying to cure their kids using hyperbaric chambers, chelation, or bleach enemas. It's nice to deal with parents who realize that going gluten free won't suddenly make their kid not autistic any more, though it will help with comfort/health issues if the kid has an intolerance or allergy. And it's nice to deal with parents who haven't pulled functioning labels on me. Some of them even seem to be heading in the neurodiversity direction, which is quite awesome. One talked about standing with Henry. And I think I have rambled enough.

Bleach enemas don't cure autism...

Trigger Warning: Bleach enemas as a treatment for autism, cure attempts, abuse

So. Who's heard of MMS? Who knows that it's essentially industrial strength bleach? Yeah, if you read other autism blogs, you probably already know this. But just in case: Over at the AutismOne conference, which is either really closely associated with or run by Generation Rescue (Jenny McCarthy's autism ``charity,") someone gave a presentation about MMS, miracle mineral solution, being used to recover children from autism. Now, much as I hate the idea of anyone trying to ``cure" a big part of what makes me me, I'm well aware that if there were an actual, working ``cure," parents everywhere would be telling each other ``Hey. This WORKED," and as the bunch who tried because of being told about it discovered that it really did, it would go viral, not be remarked upon as child abuse. And then there wouldn't be much of any autistic kids left.  This, however, is child abuse. You can't rewire a brain by putting bleach up someones rear end. It just doesn't work. There is no mechanism by which it should work, and there is no evidence that it actually does. Which means that it's USELESS child abuse too! Seriously. Bleach is a strong base, and it burns and scars. Scar tissue doesn't grow last I checked. These bleach enemas are doing permanent damage to these kids. (As far as I know, they haven't done this to any adults, perhaps because the autistic adults who have anything resembling autonomy in their lives wouldn't go anywhere near it.)
If you don't believe me that pouring bleach down someones rear is child abuse, think on this: if someone wanted to pour bleach down your rear, how would you reach? How about your (neurotypical) child's? Your child's (neurotypical) friend? Yeah, I thought so. You'd call it dangerous, ridiculous, abusive, and possibly all three at once. So why is it OK if the kid is autistic and a quack says doing this will make the kid NOT autistic? Answer: It shouldn't be, but since people seem to be missing the part where we're people just as much as the rest of you are, it's been done. And it shouldn't be. So STOP.

Why Yes, Let's Talk About Stimming.

Trigger Warning: ABA, Abuse

Since I'm planning to write a letter to Jenny McCarthy as well as to Playboy, I'm going to be reading the stuff she and her organization, Generation Rescue, put out on the internet. Most of it is so bad that I CAN'T leave it unanswered, so here comes answers.

The original article in this case is ``Let's Talk About … Stimming." The title makes it sound like stimming is something to be afraid of, but honestly? With the exception of a few actually dangerous stims, like hitting ones head against the wall or slapping oneself in the face, stims are only ``bad" if we decide they are. Maybe it's social expectations that need to change, not our stims. Because really. I flap my hands for a bunch of different reasons, and it hurts exactly no one.

His intro paragraph says that the treatment of these behaviors (stimming behaviors) depends somewhat on the cause, which is true enough if you WANT to treat it. Not a disease, but hey. Generation Rescue goes for cures, and Jenny said there were no autistic adults, so I guess stimming must be stopped. Using their (warped) logic, it makes sense.

He then goes to look for why the kid is stimming. (Since I'm not a kid, I guess he wouldn't look for why I stim. But then, the leader of his organization said I don't exist. Also, I know why I stim.) He points out all kinds of discomfort, which is true enough, and I'm more than happy to see stims that are to deal with discomfort stop because the discomfort stops (not if the kid is just hiding it, though.)

He also suggests removing electronics that provoke stimming. If it's that the electronics are causing discomfort, OK, but the ones he's describing sound more like happy/excited stims to me, so I say leave it be. Also, is he seriously talking about taking the iPad away from the autistic kid? Does he have ANY idea how many non-speaking autistics use iPads to communicate. Taking away someone's only method of communication is abuse, and it looks to me like he'd do it if the iPad was also leading to stimming. Because, you know, education can only truly begin when the kid is table-ready, aka not stimming. Besides, if you take away the way he communicates that isn't speaking, maybe he'll learn to talk. (It doesn't work that way.) So, as perhaps you can tell, I think taking away the electronics is often going to be a horrible idea and/or an abusive tactic. That iPad isn't just a toy, guys.

He eventually gets to stims that kids ``just prefer" to do. I'm not sure how accurate ``just prefer" to do is- I can stop most of my stims when I really want to, but it takes more effort than it does to stop something I ``just prefer" to do, and the super excited hand flapping and jumping isn't going anywhere even if I try. So I think he missed the ``that's how they express happiness" stims that nothing needs to be done about unless they are dangerous.

I was sad when I heard about the young man who said he wanted to rock and stim to the lights at Disney but that he knew it would be inappropriate. That young man has been successfully convinced that the way he is is wrong, and that it is not appropriate to do anything besides hide the way he is.

Finally, I know he says that children are more teachable when they aren't stimming. I disagree. I remembered what I learned much BETTER when I was allowed to fidget (stim) than when I had teachers who would confiscate my fidget toys, up to and including taking my pen on one occasion. I still don't sit still in class. You don't know that stimming means not paying attention, since it frankly doesn't mean that. Have you TRIED teaching something while the kid was flapping or rocking rather than trying to get the kid to stop first? It just might work. Of course, you're going for cures... so you want all symptoms gone, which means stimming has to go. That's why it's autism improving dramatically in your final sentence, not the coping skills or the abilities of the autistic kids improving dramatically, isn't it? You're trying to make them act neurotypical so you can claim a cure.

Autism Linked to Breathing (sarcasm alert)

So, there is this blog called Yeah. Good Times. It's written by a mother of two, and one of the two is autistic. Usually, the idea of anything written by a parent of an autistic kid kind of scares me, since they are the source of so much tragedy rhetoric. But... this specific article, at the least, is AWESOME, and what I've seen of her other stuff is great too!. It's a spoof study based on the fact that every autistic is born to a mother who breathed during pregnancy. The sarcasm is dripping so thick, they went and said this was an important link, doing so with a (presumably fake) quote by one Jennifer McCarthy, who she called ``Professor of Hyperbole and Disinformation at Johns Hopkins University" and credited with leading this study. I laughed so hard when I read this. Have at the article. Also have at the comments. Everyone was laughing about it and having a good time last I checked.

http://yeahgoodtimes.blogspot.com/2012/05/new-study-shows-autism-linked-to-moms.html

My Open Letter to Playboy

Trigger Warning: Discussions of eugenics, abuse, murder

Here it be. Feel free to comment with suggestions before I actually send it. You've probably got about a week.

To Everyone Involved at Playboy Magazine;

Since I am female, you might interpret my none-to-happy letter to mean that I am against your magazine in general. Don't. I have no moral issue with your magazine. I just take issue with you paying Jenny McCarthy to pose for you, knowing that her fee will be going to support autism research that autistics do not favor, and in fact, tend to vehemently oppose. (If someone were to negotiate the same deal, but donating their fee to the Autistic Self Advocacy Network or another autism advocacy group that actually helps autistics, I would be applauding you for making the deal. I might even write a thank-you note to you guys, publicly. Just... not for her. Not for her idea of autism research, which has much to do with eugenics, and which can arguably look like attempted genocide using the formal criteria.)

I know you'll be getting more notes like mine. Don't ignore them for being too angrily worded. That would make you just as bad as everyone else who makes arguments from tone (against people whose disabilities mess with communication, no less!) You don't get to keep hurting people just because they told you to stop in a mean way. You have to stop as soon as they tell you to stop hurting them, or as soon as you are aware that you are hurting them, whichever comes first. And we're telling you now. Giving Jenny McCarthy a fee to be donated to autism research for posing for your magazine will hurt autistics. Don't do it.

You probably want to know why I think this will hurt autistics, that or you've already dumped my letter in the garbage or closed the page. So:

1. She's convinced that vaccines gave her son autism. Vaccine injuries exist, but that's not the same as autism, and vaccine injury is extremely rare. Her son is autistic (or possibly has a disorder commonly misdiagnosed as autism but is also NOT caused by vaccines), not vaccine injured. She wants to get people to stop vaccinating. Vaccinations are how we don't have people getting polio and smallpox, by the way. It's why we don't have mumps or measles. It's why many of the Americans of my generation will never get chicken pox. It's why the flu doesn't take as many of the young and the old as it used to. And it DOES NOT CAUSE AUTISM. Giving money to her brand of autism research is almost certainly going to include giving money to trying to find the non-existent link between vaccines and autism and scaring more parents out of vaccinating their kids. This one actually hurts all people, not just autistics. So yes, this affects you. Even if you're Ok with hurting autistics, which you shouldn't be, don't be dumb enough to hurt yourself.
2. She wants to find a pre-natal test for autism, and then scare mothers into aborting their autistic kids before they are born. I'm actually pro-choice to the extent that I can't fight to make that illegal (I don't mess with why you can or can't abort because that's a slippery slope) but it smells formally of genocide and obviously of eugenic principles. Each individual parent who makes that decision? No, not exactly eugenics. But it happening at the societal level, perhaps at the 90% that has happened for Down's babies? That would be eugenics. Remember eugenics? That's where forced sterilizations came from. Not cool.
3. She incites murder. She really does. Do you want to be known for giving money to someone who has incited the murder of disabled children? Going on TV and telling people about how we are tragedies and supporting treatments that don't do anything about the fact that the person is autistic but can (and do) kill the patients is inciting people to kill us.
4. She has claimed that there are no autistic adults. Apparently that means I don't exist, nor do the writers of most of the blogs I read. Huh. They did a pretty good job at writing stuff for people who don't exist. Some of them have done pretty good jobs of standing in front of me and having conversations for people who don't exist. They've done a pretty good job of protesting Autism Speaks for people who don't exist. I'd say I've done a pretty good job accumulating passport stamps and tutoring math for someone who doesn't exist. But seriously. People don't grow out of being autistic, so that's one of the stupidest things I've ever heard. Maybe she's suggesting that our parents and caretakers kill us before we reach adulthood, which would be incitement to murder again. Maybe she is suggesting that we are never truly adults. (Not sorry. I'm an adult. I've held a job fixing computers, a job as a classroom assistant, a job as a tutor, and a job as a grader, and I've never been fired or layed off. I'm in college with three majors. I'm registered to vote. I can cook for myself. I'm pretty competent, actually, and I am over 18.) Do you want to support someone who says stupid things that piss people off? Why?
5. She thinks we need a cure. If someone autistic told me they wanted a cure, I'd find out why. If all the reasons didn't actually have anything to do with being autistic, I'd go after society, not cure the person of who they were. And... oh, wait. My autism-related difficulties fall into two categories. The ``Oh, big whoop. I don't really care." category and the ``Uh, that's a problem with your reaction, not with my being autistic. Go away." category. I wouldn't make someone who grew up neurotypical autistic, but I wouldn't let anyone make me neurotypical either. I've heard the theory that if there hadn't been autistics floating around all along, we'd still be living in caves. I could believe it. Do you think you would have been the first to squeeze the udder of a cow and drink whatever came out? Do you think you would have been the first to stick your meat in a fire and see what happened, not knowing if it would be edible after? Do you think you would have been the first to make a fire inside a hut or a cave? I doubt it. But I might have. I'd put money on it that the first people to do those things had autistic traits if I thought there was a way to resolve that bet. So go thank an autistic, and you can start by not hurting us or trying to make sure there aren't any more of us or cure us. That is just a start, though.

So, now that I've made it quite clear that there are actual reasons that you should not support her brand of autism research, kindly follow logic and don't support her brand of autism research.

Sincerely,

Alyssa **** (autistic triple major, researcher in self assembly, and author of Yes, That Too.)