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

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

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.


  1. It isn't like nobody's made a fuss before. TWO YEARS before.

  2. How disingenuous can you get?

    Not only did they choose to portray someone who's protested them for years as if she's a supporter of them...

    Not only did they take the "act first, apologize later" approach because they knew she'd refuse them if asked...

    Not only did they only pretend to go along with her take-down demand and deceitfully white-text the offending passage...

    Not only did they finally take it down without a public acknowledgment or apology...

    Not only did they change the URL so people would have a hard time tracking it back down...

    ... but they also waited until the understandably-wary autistic community would think that it had blown over and that they'd finally won one to sneak the white-texted version back up.

    I have words for them, but they would violate your desired tone for your blog, and so I won't say them here because I can't without making liberal use of profanity. I am livid on K's behalf.

  3. Also, if you search for "Kassiane Autism Speaks", the toolkit is the first thing that shows up. Also if you search "Kassiane Self-Advocacy". Which kinda sends the appearance that she supports them. Which she doesn't. At all.

    Plus, for me if you Google K's first and last name, the tool kit is on the first page. I can get screenshots if you want.

  4. Ditto ....ischemgeek!!

  5. If you're curious what it says, you can always copy the entire bottom half of the page (just drag after the last visible text to the bottom of the page, hit Control C (Command C on a mac), and paste it into a text editor. You may have to turn the text black in the text editor to read it.

  6. True. I'm not particularly curious because I've read the article it's yanked from and because I've already done that, but it's good info for folks to have- that's how you read the white-text.

  7. It seems to have been mostly removed from the file now (half of the introductory sentence remains in white-text. Google cache hasn't been updated yet, though.

  8. They took one of Cyndi []'s videos and posted it on their site without permission too.

  9. Hey, just thought I'd let you know the white text isn't even there anymore. I have screenshots of nothing showing up for the search, either. I'm not quite sure what that means, but figured you'd want to know.


I reserve the right to delete comments for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things.