Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Thursday, January 30, 2014

New Years In China

Today was the start of the Chinese new year. That's on a lunar calendar, for anyone who's interested in that sort of thing. Main point of today's post is pretty much a description of how I spent the day, though, which is ending for me as it's starting for you. Time zones are cool like that.

I had a slow morning. I had food in the fridge, which I heated up and ate for breakfast. I hung out in the morning, attempting to get Skype to work so I could get in contact with someone from my home university. They wanted me to do that because the residence director is back in the USA over break and the academic director is in Beijing, so they wanted someone to check in with me. (I totally get that, I had fairly major meltdowns a couple times during the semester where I actually needed help getting food. They don't have enough experience with my particular set of issues to get why I'd be in much better shape over break, and I didn't really expect them to. With the level of understanding they had, I think they expected break to be an utter nightmare, honestly.)

But it was telephone (Skype) tag again today. It's been that for a few days actually. Fail. I go do other stuff, mostly puttering around my room, figuring if she tries to call me I'll hear it. Apparently not, because I had some missed calls on my Skype that I found checking in the evening.

Morning passes, I go out to find lunch. Since it's new years, most things are closed, but the western brand restaurants are still open and there's a KFC in walking distance. I go there, I eat, then I take the subway to the local park. I could walk there, but I didn't really feel like it at the time. It was impressively quiet, like everything was deserted or close to it. Everyone who doesn't have to work is with family, and the subways were the quietest I'd ever seen them here. I walk around the park for a while, but there's really nothing going on so I walk home. (It is walking distance, after all! It's also almost exactly two subway stops, or one from the KFC to the main entrance. There's another entrance that uses the same stop as the KFC, close to a "dumpling" place they took us to near the start of the year. SO MANY different things get translated to dumpling...)

At 5pm, almost exactly, it's like a switch flipped. There are now all of the fireworks/firecrackers going off. I think this is what my residence director was worried about, because she'd seen my reactions to random firecrackers during the semester. Thing is, there's a difference between an unexpected single loud noise (what drove me up a wall during the semester and was the final straw on one of the meltdowns) and a constant nearly omnidirectional thing that almost sounds like thunder. That's how many firecrackers there are tonight, and that's something I'm... actually totally OK with. Thunder is fine, I sleep through thunderstorms and everything. I didn't when I was really little (and people were very confused by the fact that I understood the science of why it was the lightning that was dangerous and was still very clear that it was the thunder I didn't like,) but I've been able to for a while.

I went down to the park again at this point. It's not what I'd been imagining when I said I wanted to spend the new year in China, but it was still really cool. I sat by the lake starting a bit after sundown and just watched. I was surrounded by this thunder-type sound, and I could see the sky lighting up from all the fireworks and firecrackers, and I was positioned so that I could see a lot of the (presumably illicit, definitely unofficial) displays over the lake. Most of the ones I could see were pretty short, but the fireworks used were really nice.

Eventually I got cold and took the subway back home. Then I wrote this. Now I'm tired and thinking that I'm going to have some tea and go to sleep. It was a good day. Definitely an atypical way to spend the Chinese new year, but a good one. It worked well with how my brain works, and I enjoyed it. 

Tuesday, January 28, 2014

Explaining How I Feel

Some folks ask how I, an autistic person, can explain so well how I feel. Difficulty explaining feelings is apparently either actually common among autistic people or stereotyped to be so (possibly both?) In person/in the moment, I have trouble with it too (OK, fine, I pretty much always have trouble with it, and that's why despite the fact that I'm expressing my opinions and emotions are probably coming through loud and clear to readers, I don't usually have an emotion word in my head of how I'm feeling when I'm writing any given post.) It's just that I am typing, not speaking, and I am generally not typing about it while I am having the emotion. Distance gives a perspective that helps a lot. And, of course, there are plenty of things I get that help that the internet can cover up or that people seem to miss when noting that I am better at explaining my feelings than their autistic (usually very young) child is. Now I get to explain some of them, and maybe it can help with either getting the explanations or understanding why they might not be coming yet.

  1. I get to type instead of talking! While I actually did learn to talk on time (ok, REALLY EARLY- I've been told that simple sentences at six months is unusual even for NT kids,) there are certain topics that are very hard for me to speak coherently about, and my feelings tend to be one of them. However, I can usually express myself when typing. Most people who aren't autistic don't understand the huge difference between what you can come up with typing and what you can come up with talking because they've never experienced it. For example, if you'd asked me why I can explain my feelings so well in person, I would probably have flapped uncomfortably and not been able to answer. I might have even lost speech entirely. (Unless I thought to get my laptop out, in which case you'd have gotten pretty much this.)
  2. Time. Lots of time. Over the internet, you can't really tell how long I've spent thinking about what I've typed. Which means I get minutes to hours to think about something, when in "normal" conversation, people get seconds, maybe a minute if they are lucky. I can't come up with this kind of answer in the time frame of normal conversation either!
  3. I'm 21. (Insert whoever is not explaining emotions according to their teacher or parent) is probably not 21. So I have much more experience of life behind me, along with a lot more practice at sorting out how I feel about things. I've noticed that plenty of neurotypical children have trouble explaining their words.
  4. Expressing emotions/opinions in person scares me. I think it's because I've gotten in trouble for expressing unpopular opinions, and because I was always "too sensitive" when bullies upset me, even by my parents standards (I actually cry pretty easily- I'm just not likely to realize I'm upset without crying.) Typing over the internet, I can take a step back from reactions (or at least not let anyone else see if I'm crying.)
Those make a huge difference. No one expects a neurotypical kindergartener to be able to express feelings and explain opinions as well as a neurotypical 21 year old. Everyone figures that the neurotypical kindergartener is going to get much better at this in the next ~15 years. And autistic kids can too.
If you aren't autistic, you probably don't understand how getting to type rather than talk helps. But believe me- it can, even for people who normally can talk. (When I can talk, which is most of the time, I usually come across as highly articulate, and typing still helps me!) And, of course, let people process things at their own pace and make sure they actually feel safe expressing their opinions, even when those opinions are not the same as yours.

Saturday, January 25, 2014

Autism Speaks Are Work-Stealing, White-Texting Liars.

Image of Radical Neurodivergence Speaking's cat, reads: "You stole my mom's writing and lied about it for three years. I will end you Autism Speaks. End you. "

Now that I've got your attention:

This started about three years back. In February, 2011, Kassiane found that Autism Speaks had quoted her out of context in their transition toolkit and gotten the attribution wrong. She wrote a post called Autism Speaks: SHUT UP AND LISTEN. It was from a book, so the protocol should have been to ask the publisher: Autism Speak's representative, Kai McMahon (his title legitimately used to be "Social Media Crisis") commented claiming to have gotten permission from the publisher, the publisher says no such permission was given. Given that Autism Speaks didn't manage to be honest anywhere else with this... I'm much more inclined to believe the publisher.

Come 2012, usethebrainsgodgiveyou commented on Kassiane's original post, noting that if you go to the toolkit and search for Kassiane's name using CTRL+F (might be different on operating systems other than Windows,) her name shows up twice. Rather than take the quote off at authorial request, they white-texted it. That's the tactic disreputable sites use to get higher up in search terms, by the way, and it's worked: as of 1:41am Eastern Standard Time on January, 25, 2014 (2:41pm same day China,) that document is the top result for "autism speaks kassiane sibley." It's on page 2 searching "kassiane sibley."

Now, here's the even more dishonest bit.

Thanks to the comments on Liz Ditz's post, "When National Charities Offend Those They Are Supposed To Serve," we know that in January 2012, sometime between the 13th and the 17th, Autism Speaks did take the quote off their kit. At the time, the kit was at this link:

Today, in early 2014, the quote is back. It's also at a new URL- the old one is broken. The current one is here:

And yes, the URL change could be a result of site reorganization. The fact that the document is back to the one with the white-texted quote? That requires intent, and it makes the URL change look more suspisious. It's like they're trying to hide just how dishonest they really are. We don't actually know the exact date of when they changed back to the white-texted version- I know that I checked in mid-2013 and Kassiane's name did not appear, but "sometime between mid-2013 and January 25, 2014" isn't very specific.

UPDATE 4am EST, Jan 25: Waybackmachine shows it's been up since September 28, 2013 or earlier.

But at the heart of it, how long it's been up there isn't entirely the point. The point is that it should never have been up there, because the publisher says no permission was given, it should have been taken down the first time Kassiane asked, and once it was down, it should have stayed down. None of those things happened, because Autism Speaks are work-stealing, white-texting liars. And yes, I find it ironic that I'm finding out about this right after writing a post about how it's important to cite your sources, partially inspired by Autism Speaks doing this sort of thing.

And can we maybe think about the fact that this is an organization run by mostly white middle to upper class parents of autistic kids doing this to a poor, multiply disabled, Autistic woman of color? Did they maybe purposefully choose someone they'd expect to be unable to fight much?

This needs to be a social media crisis. I suggest tweeting, sharing (including to Autism Speak's wall and comment threads), retweeting, looking at Boycott Autism Speaks and their memes, that sort of thing.

Screenshot of Google Search for autism speaks kassiane sibley, first result is for the toolkit. Taken January 25, 2014

Screenshot of Google Search for kassiane sibley, second page, with the Autism Speaks toolkit as a result on the page. Taken January 25, 2014

Screenshot of my searching the toolkit for "Kassiane" and getting 2 results. Taken January 25, 2014.
UPDATE 4am EST, Jan 25: I've been told that the toolkit comes up first page if you search "Kassiane Alexandra" instead of Kassiane Sibley. Screenshot attached.
Screenshot of Goofle Search for kassiane alexandra, first page. Autism Speaks toolkit is the third result. Taken January 25, 2014.
UPDATE 7:40pm EST, Jan 27: Thanks to ischemgeek's comment, I checked again. The white text isn't 100% gone- there's "One thing autistics and parents of autistics agree upon is the desire for " remaining where the white-text was, but most of it is gone. The Google cache has not been updated, however, and the document is still the top result for searching Kassiane Sibley Autism Speaks. While on the document, I noticed that Ask and Tell, the book Kassiane's work was pulled from, is first on the list of self-advocacy resources. Using Wayback Machine, I confirmed that this was the case previously as well. I also screen-shotted to show that the white text was present on both September 28, 2013 and October 13, 2013.  Additionally, Autism Speaks has not made the (actually) public apology that Kassiane has been asking for since this whole mess started. The most public was on Liz's old blog post near the bottom of the comments section, and that was prior to the current round of dishonesty.

I also checked Wayback Machine for the old URL of the document, at this URL: April 28, 2012 was the only date that the document was covered by the archive at that URL, a couple months after the events Liz chronicled at  "When National Charities Offend Those They Are Supposed To Serve." This version also has no results when searching for Kassiane, but does retain "One thing autistics and parents of autistics agree upon is the desire for " as white text. 

New screen-shots are below, with captions. Note that I am on Beijing time, not Eastern Standard, meaning that my times are 13 hours ahead of Eastern Standard.

The Autism Speaks guide with most of the white text gone. "One thing autistics and parents of autistics agree upon is the desire for " remains. Taken January 28, 2014.

Google search result for autism speaks kassiane sibley, the transition and self-advocacy document is still the first result, indicating that the cache has not been cleared. Taken January 28, 2014.

October 13, 2013 version of the document via Wayback Machine, showing highlighted white text and that there are two results for kassiane. Taken January 28, 2014.

September 28, 2013 version of the document via Wayback Machine, showing highlighted white text and that there are two results for kassiane. Taken January 28, 2014.

April 28, 2012 version of the document at the old URL via Wayback Machine, showing no results for Kassiane and with "Select All" to show that one line of white text remains. Taken January 28, 2014.

Thursday, January 23, 2014

T-21 Blog Hop: Social Justice

IRONY UPDATE: One of the things that inspired this post was an Autism Speaks fail that I thought was over and taken care of. The day after writing this, I find out it's not actually over and that Autism Speaks are white-texting liars and also put the white-texted toolkit back up. Story here.

Today, I'm talking about a social justice issue that probably a lot of you don't think of as social justice or as related to disability. But it is. I'd describe it as "cite your sources," but it's not a full MLA or APA or Chicago citation that we necessarily need as a justice thing. Frankly, making my own citations of those kinds is a cognitive access issue for me, so I either use an automatic generator or get someone else to do my citations. But the idea of saying where you got the ideas you're using and building on? Yes, that is a social justice issue.

So. Here's the part where I talk about why.

Advocacy comes with innovation. People need to figure out what it is in their situation that needs to change, and they need to figure out how to change it. People are coming up with new ideas- that's what innovation is. When people neglect to list where they got these ideas from as they build on them, there's a few things that happen. (Links Democratizing Innovation and my post about the book, because relevant.)

First, people tend to forget where the ideas actually came from. When we're talking about technology stuff like in Democratizing Innovation, that means corporations don't know which customers came up with the ideas.

Then they forget that it even was customer who came up with the ideas. They think they came up with the ideas themselves.

Now the big group probably has control over the idea and thinks they came up with it, but they didn't!

This applies with advocacy things too, sending credit for ideas up the power gradient- how did Queer Rights stuff start up in the USA? It wasn't about marriage for people of the same gender. Trans women of color started that up, predominantly Black trans women. Today the face of this sort of advocacy is white gay men, and the T for trans that started this movement tend to get ignored. There are people in those movements who legitimately think it was white gay people who started it.

In disability stuff, parents of kids with disabilities generally have more power than people with disabilities do themselves. (Less so if the parents are also disabled, even less if they're openly so, and there are some organizations that make sure to give their power to Disabled people to try to combat this, but overwhelmingly it's parents who get listened to. Check the readership on blogs if you don't believe me.) Within disability, the image we have is usually a young white boy with whatever the disability in question is. Sometimes it's not, but that's the usual. A white man with the disability is probably going to get listened to more than someone who isn't a white man and has the same disability, or than someone who has multiple disabilities. There are a lot of power differentials. Access to academia is one of them.

When we fail to cite/link/acknowledge where our ideas are coming from, we wind up erasing our sources. This can cost them opportunities for authorship and scholarship and other things that can help with being not impoverished. Poverty is a big issue for marginalized groups, like, you know, people with disabilities. People also sometimes act like a group doesn't really exist, which can get into an ugly cycle with this: the idea can't have come from them because they don't exist, and we know they don't exist because they don't come up with ideas! So we ignore the ideas they came up with (or pretend they came from someone else), maybe we'll come up with the idea that they can't think. Wait, that's already a disability stereotype. It'll just get worse.

So yes, if you're building off an idea someone else wrote about, say so. Give enough information that people can find what the person wrote. Since this is the internet and most of us are bloggers reading other bloggers, link it! Links are good! They drive traffic to the people you linked, which is good for plenty of reasons, including social justice type reasons when you're linking disabled bloggers. Boosting the voices of people from the groups you want to help is a big part of how you do allyship.

Oh, and a note for the folks who think citations and copyright law and such are evil and bad: that's great, if you want to tell the world that they don't need to cite you go ahead and do that, but if you enforce that "no citations" rule on others, that's not OK. You might be couching it in the language of justice, but if you're erasing the marginalized folks who came up with these ideas, it's still helping oppressors. And yes, this applies to ethnographic stuff and sociological stuff, if you're talking to members of a marginalized group about their experiences and one of them tells you they don't want to be anonymous, you listen. Enforced anonymity erases scholars who are members of the groups being studied, and that's unacceptable. (Offering anonymity is still important- it's enforcing anonymity that's a problem.)

Also, creative commons is kinda cool and probably has a license that will keep some big corporation from taking your work and making it proprietary like happened to the work of a bunch of MIT coders and which still lets people use your work in the ways you want them to be able to use it.

This was for the Down Wit Dat T-21 Blog Hop.

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Tuesday, January 21, 2014


This is me pretending I'm back. Maybe if I pretend hard enough I'll actually be back.

It was a tough semester. It was also a longer semester than I'm used to, since China ended at mid-January, not mid-December. I've got a nice long break now- I've been on break for about a week and a half, and I've got a bit more than a month left. So that's something.


There's a survey for parents to help create some sort of community support thing. I think it's meant to be an alternative to the Autism Speaks First 100 Days thing, except actually autistic-friendly, accepting, not fearmongering... you know, all the things that are going to make life miserable because you're being told that if your kid stays autistic then life will be, and thus you make yourself miserable trying to change your kid's neurology. Which doesn't work, and oh hey this looks like a self-fulfilling prophecy. Realize that "good life" and "autistic" can go together, and it looks a lot less bleak. At least, I think that's the idea. So you should go take that survey if you've got an autistic kid and you're able to survey. Sharing it all over the place is also a good idea. is the link.

Also, the T-21 blog hop is on. It's already open for putting posts in, theme is social justice, and the runner says all disabilities are welcome. The link to the hop is here. As part of my pretending to be back, I will try and get a thing in for that tomorrow. Woo writing. if you want to share that link, too.

I went to Beijing with some people from my university, since they ran a winter China trip for mostly sophomores and they spent the last two days in Beijing. That's really close to Tianjin, so I hung out with them for a couple days. We went to the Summer Palace, the Forbidden City, the Great Wall, and the Temple of Heaven. We also ate food that's more varied than what I usually eat. I'll happily eat the same thing for days, them not so much.

That's pretty much my story.