#AutismSpeaks10 Aren't #AutismChampions.

I've been fairly active on Twitter the last few days with the Autistic and allied takeover of the #AutismSpeaks10 hashtag, and now the new tag, #AutismChampions (the s at the end is important, because without it you wind up in a different tag.)

I've also been super-busy offline, and I've been working on some cool advocacy, activism, and art stuff that's not ready yet, so I've not had enough time for that and blogging typically. In lieu of a more typical blog post, here's embeddings of all my original tweets to those two tags. :)

I seriously recommend looking at both tags, though, and maybe retweeting some stuff or adding your own! Warning, though: Some of the stuff Autism Speaks has done is really triggering, and we are talking about it.

#AutismSpeaks10 spreads the idea that our families are not living, just existing... and doesn't seem to worry how saying so affects *us.*
— Alyssa (@yes_thattoo) February 21, 2015

#AutismSpeaks10 style "awareness" is why TNJU didn't want an autistic student (me) to study abroad at their school.
— Alyssa (@yes_thattoo) February 21, 2015

(The Chinese tweet is a translation of this.)

#AutismSpeaks10 tries to teach autistic children to act normal (hence, speak) and then adults to STFU. Interesting turnaround.
— Alyssa (@yes_thattoo) February 21, 2015

#AutismSpeaks10 helped me realize just how much people are afraid of anyone who thinks and acts differently. By spreading that fear.
— Alyssa (@yes_thattoo) February 21, 2015

由于 #AutismSpeaks10 的“帮助” 和 “提高认识”，天津师范大学恐怕自闭症，不要接受自闭症的留学生。
— Alyssa (@yes_thattoo) February 21, 2015

(This is Chinese for the TNJU (Tianjin Normal University) tweet.)

#AutismSpeaks10 has taught people that without normalization therapy, autistic people can't have a good life. But here I am, and here we are
— Alyssa (@yes_thattoo) February 21, 2015

#AutismSpeaks10 years lobbying to mandate therapy to match the guy who thinks we don't start with basic rights as people. See Lovaas: (1/2)
— Alyssa (@yes_thattoo) February 22, 2015

"With responsibility, the developmentally disabled individual takes on dignity and 'acquires' certain basic rights as a person."-The ME Book
— Alyssa (@yes_thattoo) February 22, 2015

#AutismSpeaks10 seem pretty sure that natural autistic body language and coping mechanisms are scary behaviors to eliminate. They're wrong.
— Alyssa (@yes_thattoo) February 22, 2015

Well, the Autistic tradition of flipping off the #AutismSpeaks10 offices when we pass them in NYC or Washington, DC is kinda fun, at least.
— Alyssa (@yes_thattoo) February 22, 2015

Like, JER left #AutismSpeaks10 essentially because they weren't listening. He already tried the nice thing. It DOESN'T WORK.
— Alyssa (@yes_thattoo) February 22, 2015

Be sure also to thank #AutismSpeaks10 for saying autism works faster than cancer and muscular dystrophy. #IamAutism @Privetine
— Alyssa (@yes_thattoo) February 22, 2015

Just a reminder that for an additional #AutismSpeaks10 backfire gift, you can totally leave a 1 star review here: https://t.co/wqKnUAjTZc
— Alyssa (@yes_thattoo) February 22, 2015

Y'know, without #AutismSpeaks10 years of fear-mongering, fewer #actuallyautistic would have so much time for twitter. #irony.
— Alyssa (@yes_thattoo) February 22, 2015

Given what #AutismSpeaks10 has for stated goals, I'm GLAD they're inefficient. Eliminating autism is eugenics, folks. #ActuallyAutistic
— Alyssa (@yes_thattoo) February 22, 2015

Reminder that #AutismSpeaks10 tried to sue an autistic minor for parody. Talk about silencing autistic people! http://t.co/OwheWn5gjn
— Alyssa (@yes_thattoo) February 23, 2015

Also a reminder that #AutismSpeaks10 has a history of plagiarizing autistic adults, white-texting, and lying about it http://t.co/1hmhMMd65X
— Alyssa (@yes_thattoo) February 23, 2015

But seriously, I have a "Problem with Autism Speaks" tag. http://t.co/7MTJPKDq0W #ActuallyAutistic #AutismSpeaks10 @autismspeaks
— Alyssa (@yes_thattoo) February 23, 2015

So @alannarwhitney made an #ActuallyAutistic alliteration acrostic of #AutismSpeaks10 here: http://t.co/C8XlhKVnDw Poetic truth to power!
— Alyssa (@yes_thattoo) February 23, 2015

#AutismSpeaks10 years of acting like autistic people are complete burdens and writing us out of our own stories.
— Alyssa (@yes_thattoo) February 23, 2015

#AutismSpeaks10 years of actively spreading fear of autism and #ActuallyAutistic response got covered on @BuzzFeed http://t.co/bpjqRlHQ4z
— Alyssa (@yes_thattoo) February 23, 2015

Just occurred to me that "The Beginning of Her Hell" is an argument against the "therapies" #AutismSpeaks10 suggests. http://t.co/XaCmPFlI9D
— Alyssa (@yes_thattoo) February 24, 2015

#AutismSpeaks10 years of every cool thing an autistic person does being "despite" or a sign of "overcoming" autism. :(
— Alyssa (@yes_thattoo) February 25, 2015

. @GMA Consider covering the #ActuallyAutistic responses to #AutismSpeaks10 Autistic people are speaking, listen to US.
— Alyssa (@yes_thattoo) February 25, 2015

#AutismSpeaks10 years insisting that barest acknowledgement of good things from autism is "false hope" of sunshines and rainbows...
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 years of frank eugenics. That's what trying to eliminate those deemed "burdens" is. #ActuallyAutistic #RightsNotElimination
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 speaks over us like we're not here and calls us #MSSNG. And also can't do math: 3 million Autistic Americans=total. Not kids
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 uses our numbers to spread fear then denies we exist. #Autistic adults know what's up. #ActuallyAutistic #MSSNG #NotMSSNG
— Alyssa (@yes_thattoo) February 26, 2015

So remember that #MSSNG campaign that #AutismSpeaks10 ran? And how that's legit saying we're missing (stuff)? We're #NotMSSNG. We're here.
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 lobbies to mandate a therapy that shares its history with gay conversion therapy. Lovaas-ABA. Look it up. #ActuallyAutistic
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 lobbys to mandate a therapy with a stated goal of indistinguishability, at unreasonable cost: http://t.co/a2lHk0XWoR
— Alyssa (@yes_thattoo) February 26, 2015

Dude. If you get run out of your own hashtag by the population you claim to help, you are NOT #AutismChampions. #AutismSpeaks10
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 is the problem, making it harder for #ActuallyAutistic #AutismChampions to get anything done.
— Alyssa (@yes_thattoo) February 26, 2015

Some REAL #AutismChampions are @UVGKassi @dkmnow @autistichoya @CorinaBecker @AutismAcceptDay @Aut_Love_Accept @Autism_Women
— Alyssa (@yes_thattoo) February 26, 2015

.@DeannaNMc Autistics speak, it's time to listen TO US. ( @autismspeaks can shut up now, they aren't #AutismChampions.)
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 as #AutismChampions? More like #EugenicsChampions, get real. Eliminating autism *is* eugenics.
— Alyssa (@yes_thattoo) February 26, 2015

As an #ActuallyAutistic person, I'm grateful for @AutismSpeaks inefficiency, not their work- a sign they aren't #AutismChampions after all.
— Alyssa (@yes_thattoo) February 26, 2015

Disability Fearmongering Rhetoric Disorder

DFRD

Terrifying statistics, epidemics, children stolen by an unknown foe,
No person stealing us away, an abstract idea of miswired minds,
Of lives gone awry when the menace struck:
Disability Fearmongering Rhetoric Disorder.
DFRD, it leaves families empty and lifeless.
The tricksters laugh on, they need not steal what we throw away.
No need to hide what's presumed gone,
No need to take what's ignored in favor of fear.




So um this one got inspired by Amy's post about Autism Speaks Rhetoric Disorder (ASRD). I used a different name because it happens with other disabilities too and because Autism Speaks isn't even the only offender for autism. It's the biggest one, best funded one, here in the USA, but it's not the only one and I don't want to let the others slip under the radar, especially not Generation Rescue, considering that they actively promote stuff like bleach enemas and chelation.

Autism Fearmongering Rhetoric Disorder (AFRD) is a subdiagnosis of DFRD, with the Autism Speaks specific Autism Speaks Rhetoric Disorder a subcategory of AFRD. April is the awareness month for the entire Autism Fearmongering Rhetoric Disorder subdiagnosis, with Autism Speaks Rhetoric Disorder perhaps the most widespread due to the organization's large reach.

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. timetolisten.blogspot.com "

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: http://www.autismspeaks.org/docs/family_services_docs/transition/Self-Advocacy.pdf

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: http://www.autismspeaks.org/sites/default/files/documents/transition/self-advocacy.pdf.

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: http://www.autismspeaks.org/docs/family_services_docs/transition/Self-Advocacy.pdf 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.

Neurodiversity Michigan Begins

Warning: These are my responses to things with problematic elements. There may be references to ableism, bigotry by ignoring differences, and disease models of autism.

So there is a class about autism, culture, and representation going on at the University of Michigan. They made a website with student posts, which can be commented on publicly. You can find the whole thing here.

I am commenting. Not on everything, there's a whole class worth of stuff and I'm in China studying abroad and I have my own stuff to deal with like finishing editing my Neurodiversity in Tamora Pierce essay for FYT Writes a Book and figuring out where my paper on the erasure of Queer Autistic people can get published and actually doing my study abroad stuff. But some. I'm putting my comments here, too, so that my readers can see them. 

On The Struggle with the Categorization of Autism, I said:

Hi!

I think that the way language works is really important to think about here: if you don't have access to the words to describe something, you're not going to be able to do so using language, and lacking the words to describe power dynamics between various neurominorities and the majority who are close enough to the mythical norm to get privilege from it doesn't make the dynamic go away. I think that's why the word "neurotypical" is important. Because "Autistic people and normal people" has implications to it that "Autistic people and allistic people" or "neurodivergent people and neurotypical people" doesn't have, even if neurotypical does literally mean neurologically typical.

[Think sociology and how people don't seem to think of heterosexual as a sexual orientation, but it is one- neurotypical is a neurology, even if folks tend not to think of it.]

On Perspective, I said:

Hi Aaron, 

I'm also an engineer- I'm in mechanical engineering, math, and Chinese, though I did research in a chemical engineering lab for a while. I think it's super-important to have more people in STEM fields who know at least some about disability, especially since we kind of design the world the next generation is going to live in.

I think the point you make about how recovery has a lot of important stuff tied up in it is good. I've never had anyone suggest that I've recovered from my gender when I do something where I'm the only girl, but my doing things where I'm the only Autistic person sometimes leads to people thinking or saying I must have "recovered" from autism. Which is silly! How would I recover from my neurology?

And yeah, Autism Speaks being seen as grassroots. It's got some support that could be called that, but they did not start off as anything like grassroots and I think it'd be a lie to call them grassroots. They're pretty top-down in everything except perhaps fundraising, where having at least some grassroots-looking stuff will get them more money and they know it.

On Learning to Live, I said:

Your point about people being too focused on changing their loved ones and not thinking about learning to live as they are is important. I do want to point out that autism is a neurotype, not a disease- diseases are generally things like malaria, cancer, etc- dangerous by nature, something that you try to cure, something that is not a natural part of the person.

Also, I'm not sure what you mean by "the disease aspect." Do you mean the difficult parts of being autistic? We can't ignore those when trying to find ways of making Autistic life easier, since making life easier means looking at the hard parts and trying to help with those. Do you mean the stigma part? Ignoring stigma unfortunately doesn't make it go away. So I'm not sure what that aspect is.

So there's that. I'm sure I'll say more, and I'll probably put that more up here.  

"Everybody" knows wrong.

Trigger Warning: Erasure, references to ableism and "wiping out" autism

Today, I'm talking about one of the parallels I noticed between manufacturers as described in Democratizing Innovation and organizations that miss/ignore the contributions of activists who are outside their organization. Autism Speaks would be a pretty good example of that kind of organization, FYI. They needed a week of activists yelling at them on their page to give credit to the fact that Google's changes to their search suggestions didn't just happen. Autistic adults, a group they tend not to think about beyond the idea of a crisis and transition, made it happen.
 Manufacturers are often convinced that they developed innovations that were actually developed by lead users, only convinced after being shown the lead user prototypes predating the designs they sell commercially. This comes at least partially from the fact that “everyone” knows user needs are found through market studies and products are designed by manufacturers to meet these needs. Similarly, "everyone" knows that nondisabled caretakers are the advocates for disabled people, and that often means parents. This is the part where I quote Tamora Pierce, in the form of something she had Daine say: "Someday I must read this scholar Everyone. He seems to have written so much- all of it wrong." That shows up in Emperor Mage. It's kind of the problem here: "everyone" knows a thing. "Everyone" knows that user needs are found through market studies and then manufacturers design a thing to meet those needs. "Everyone" knows autistic people are helpless eternal children and someone else needs to make advocacy things happen for us. And "Everyone" is wrong.
But.
"Everyone" knows it. And that has effects. Since “everyone” knows where innovations come from (manufacturers,) manufacturers typically don't track where their innovations actually come from. Or groups like Autism Speaks don't track down how things actually came about. Maybe they even feel like the changes Google made were things that just happened. It's not true, but everyone knows manufacturers do the things or everyone knows autistic adults don't exist/don't do the things, so no one checks to see if maybe someone other than a manufacturer did the thing or if autistic adults did the thing.
Additionally, modifications and improvements made by their own engineers often hide the user-innovator roots of the product. In terms of organizations, that can be things like organizations making additions to the things that other activists (even member activists!) do and then not crediting the initial activists who started the thing. That happens, sometimes. I'd put money on even organizations I like, ones I think of as generally being pretty good, doing that one. How they react when the roots are pointed out matters more to me than them making the mistake or not, in this case, since, well, it's not that hard a mistake to make. But if you insist that it's 100% yours now and/or that the initial contributions of the original activists don't matter? That's when we have a problem.
In reality, nearly 80% of major innovations in scientific instruments that were commercialized actually came from user-innovators, despite manufacturing firm managers being convinced that all the examples were developed within the firms. In reality, Disabled people, Autistic people, make a lot of things happen. It was autistic people who got Easter Seals to write their apology, I'd bet. It was predominantly autistic people in an autistic-run (I KNOW IT WAS AUTISTIC-RUN BECAUSE I RAN THE FLASH BLOG AND KNOW THE PERSON WHO TALKED TO THE MEDIA) effort to get Google to at least not suggest hate speech searches. [The results of the searches were not changed. This is not preventing people from accessing articles, it is simply making it so that you actually have to type out the hate speech yourself if you want to search hate speech.] It was disabled people who made the ADA happen. It was autistic people who dealt with the bus ads talking about wiping out autism. The people who use things every day, who know their disability in and out because they live it, who are out in the community or out in the world living? Yeah, we actually do a lot of things. It's not all big organizations or big manufacturers, but the "wisdom" that it is? It hides the times when it's not.

P.S. Today is my birthday and also I'm heading off to a pre-departure orientation for study abroad. 

Autism Acceptance is NOT

Trigger Warning: Mentions of cure, ableism, mourning for autism diagnosis.

As March ended, I wrote a few things that Autism Acceptance is. And it's important.
We also need to be aware of what Autism Acceptance isn't. And that's what I'm talking about today.
"I love my child, but I hate his autism." That's not autism acceptance. It's not even acceptance of who your kid is. Because some of the things you claim to love are also closely intertwined with autism.
Acceptance as in the stage of grief is also not autism acceptance.
By the way, that's what Autism Speaks is talking about here:

Acceptance
Ultimately, you may feel a sense of acceptance. It's helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism. Accepting the diagnosis simply means that you are ready to advocate for your child.
The period following an autism diagnosis can be very challenging, even for the most harmonious families. Although the child affected by autism may never experience the negative emotions associated with the diagnosis, parents, siblings and extended
family members may each process the diagnosis in different ways, and at different rates. 

That's not autism acceptance. That's going through mourning for a kid because they have a different neurology than you do.
(Most of the things Autism Speaks has tagged with autism acceptance are nothing of the kind. Just so you know.)
Biomedical treatments for autism are not autism acceptance. Medical treatments for the other conditions that an autistic person might have are good, but completely irrelevant to the question of accepting autism or not, just like the those conditions aren't actually autism. (No, really. Whatever it is that's up with my stomach isn't autism, nor is my history of asthma, nor was my shellfish allergy. No, I don't know how a shellfish allergy going away works, but it happened and I don't really care how it happened.)
Insisting that autistic people must learn to pass for neurotypical while also claiming it's fine to be autistic isn't autism acceptance.
Telling Autistic people who have learned to pass because they had to that this means they aren't really Autistic isn't autism acceptance either.
Insisting that you can speak for all Autistic people isn't autism acceptance no matter who you are. That you can say some things which could help all Autistic people and trying to do so? That could be autism acceptance if the things you're saying fit under it. (Remember, we all communicate for ourselves, you can speak for the benefit of someone else, but not for them unless they have said you can.)
Demanding eye contact is not autism acceptance.
Demanding quiet hands is not autism acceptance.
Setting "indistinguishable from one's peers" as the goal is not autism acceptance.
Conflating life skills with passing for neurotypical is not autism acceptance.
Speaking of cures is not autism acceptance. (Cures for things that aren't autism are kind of irrelevant to autism acceptance, so this still holds.)
Comparing rates of autism with rates of cancer, AIDS, other things that are actually diseases? Not autism acceptance.
Being proud of your own Autistic self, then turning around and insisting that a certain other group of Autistic people needs a cure? Not autism acceptance. 

They... Responded?!

Yes, you heard me. Autism Speaks actually made a semi-response to the "Autism Speaks, I Want To Say" flash blog. Maybe they remembered the fuss we made after they erased Autistic activists from the whole "Autistic People Should" flash blog leading to Google changing the autocomplete search terms and then some of us going after Autism Speaks' erasure in the following "Autistic People Are." Maybe. Maybe they noticed that the same person organized all three events. I'd love to think I'm a sufficient threat to them that they keep an eye on me.
But note that I say semi-response. It's very clearly a PR response, you can read it here. Reading it, I could swear I was back in high school listening to my principal talking about how valued student perspectives are but not saying a word about what the perspectives were, not telling us where to find the perspectives, not addressing anything students actually said. It reeks of "isn't that cute!" as opposed to being the response of someone who sees us as equals.
I mean, it's progress. Ignore, then laugh, then fight, then win, right? Well, they're not exactly laughing at us, but they are speaking from the position of thinking that they don't really have to listen, they just have to say nice words about listening. They're wrong, but one of the mistakes you get hit hardest for is underestimating your opponents and I plan to hit them fast and hard until they learn that despite the financial imbalance, Autistic people are speaking and it is time (long past time, really) for them to listen instead of ignoring and fake-listening. Not good enough, Autism Speaks. Talk to us like equals. Respond to our actual statements. I know how power balances work, and I know we have more power than you want us to have. I know we have more than you think we have, too, and that we are better at using what we have efficiently. You might have a financial edge of orders of magnitude, but we have people who know what we are arguing for- our lives, our rights, our safety. Something worth fighting for. And we are stronger for it. Autism doesn't speak unless autistic people are speaking, and we are, and it is time for you to listen properly.
Don't just tell us that our perspectives are important, show us. Do it by responding to what we have to say, not just to the fact that we are saying things and that this is (not really) important to you. I went to a public high school, I know how administrators who want students to think they care talk. And I'm on a neurodiversity committee at college. I know how administrators who actually care talk. You fall squarely into the responding for PR but not actually caring what we say category, and don't ever believe that you have me fooled.

Autism Speaks, I Want To Say

Before I even watched the documentary, reading your description on your site gave me a pretty good idea about what I want to say.
From it:
Autism Speaks, I want to say that for something "about" AAC, the described focus is all wrong. It shouldn't be about the parent's emotional struggle to communicate because it's about the kids. It shouldn't be highlighting the increased diagnosis because that's not the point of AAC at all. The hope and promise of AAC is potentially good, though knowing your organization, I wasn't convinced the hope and promise that you described would be the one of "how this actually helps AAC users."
Watching it, in the first minute I had to pause, cringe, wait to calm down. There was SO MUCH touching of the kid, and there was no way to get his permission because he didn't have his AAC out to answer or anything. Yes, I know that she's probably his mom, but... I'm Autistic. I have touch sensitivities. That kind of constant light touch drives me nuts. Then they got him set up. (He's using what looks like FC?! Was not expecting Autism Speaks to use that, I'm... actually kind of impressed by that, but, like, why "I am excited"? That's not actually telling us what he wants to say, which is the title of this...
And then they call autism a nightmare. NO NO NO NO NO.
Autism Speaks, I want to say that you need to stop using that kind of rhetoric because it is actively hurting the population you aim to serve. I don't care why you think calling autism a nightmare is OK, I don't care what context you think you have to justify it, you need to stop doing that, and NOW.
Autism Speaks, I want to point out the irony in having your autism expert say on camera that other's ignorance is responsible for some of our suffering when it is your brand of awareness that causes it. Yes, you. I have dealt with the ignorance of "never heard of autism before" and I have dealt with the ignorance of "educated on autism by Autism Speaks." The latter is far worse. Autism Speaks, I want to say that you are part of the problem by your own description.
I don't know if the things that we see on the screen next were things that the featured AAC users actually typed, but if it was not by them, another person with autism, or an autistic person, then it should not have featured. It's dishonest to mix things AAC users actually typed with things that we only imagine them to have typed, so it needs to be clear which is which. (I could see those things having been typed by a person bearing the education of Autism Speaks on what it is to be autistic, what it is to be non-speaking, so I could believe that this paragraph is moot. But I could also see it not being moot, since we know that Autism Speaks has written in first person about things that they are not in the past.)
And then we cut to kids doing things that I have done, some of which I still do. I suppose it is supposed to be illustrating how different and tragic we are? I don't know, they just look like kids to me. Autism Speaks, I want to know what the purpose of that was, because different and bad are not the same and either that scene was pointless or you're using the merely weird as evidence of bad.
Almost 3 minutes in, we see an AAC user typing a thing that has substance. "I am ready to change the way people view us." So am I, so am I. Autism Speaks isn't going to do that in the way I'm guessing and hoping you would like to see, always viewing you as a cut below normal, but goodness do I want the way people view us to change. It's part of why I'm here.
Now we get to the part that highlights the increasing diagnosis.
Autism Speaks, I want to say that you really need to quit it with comparing autism to AIDS, diabetes, or cancer. Not that those are particularly great to compare to each other, even, but they all have "has the ability to be fatal on its own" in common, at least if left untreated. Autism can't do that. Autism Speaks, I want to say that you need to stop comparing autism to death, stop calling autism a nightmare, stop making it about the parents, stop focusing your conversation, well, anywhere except the autistic people and what will help us most. (Hint: Actually giving nonspeaking people iPads and other AAC devices and paying for them to be taught to use them is a better use of your money than pretty much anything else you do, including making this video.)
"He's really sweet for being an autistic child."
Autism Speaks, I want to say that if you have provided the education that leads people to think that is a compliment, rather than the statement that autistic children, autistic people, can't be sweet, then you are Doing It Wrong. And yes, I feel safe saying that you're the group that provided the "education" leading there. Acceptance does not mean thinking we are sweet... for autistic people. It means understanding that we have the full range of sweetness and meanness and happiness and sadness and anger and frustration that all people have, realizing that anything ending with "for an autistic person" is stereotyping us and going to be wrong, going to be bad.
Autism Speaks, I want to say that leading parents to believe that they know for sure that curing their childs autism would lead to them having a happier life is not autism acceptance. I want to say that it is, in fact, the opposite of acceptance, and it isn't even true. Being autistic doesn't prevent happiness. It is a failure of this "theory of mind" so many claim we lack to assume that we must view our lives as you view them. Remember that we have never lived another way, remember that autistic people have this tendency to not like change, remember that our life of experience will still be of things that line up with autistic, remember that there is no way to make everything as if we never were and that a neurotypical mind with autistic memories is not a combination that is going to work well. It is one that will lead to all kinds of confusion, all kinds of pain. Happier? I doubt it. More normal seeming? I'm sure of it. And I think that conflating normal with happy is one of your main rhetorical issues. Maybe it always has been, that and conflating different with bad and the specific difference of autism with death and despair and nightmares of your own creation.
And Autism Speaks, I want to say that speech and communication are not the same thing. In a piece about AAC, you should know better than to have the two conflated. It's not the same. Some autistic people will develop speech "on time," others later, others never, some speak and then stop, and keeping speech linked to what we want to communicate takes a lot of work for many of us. Keeping our AAC linked to what we want to say is often easier, even for those of us who do speak. Typing is more reliable communication than oral speech for many of us.
Autism Speaks, I want to say that the purpose of AAC is communication. It is not, was not, should not be to make us more normal, but to let us express ourselves as we are.
Autism Speaks, I want to say that conflating whatever it is that means a kid is in constant pain with the fact that he is autistic? That's not responsible. Like, at all. Because, yeah, sensory issues are a thing, but "failing to accommodate sensory issues" isn't autism, assorted chronic pain conditions aren't autism, autism on its own doesn't do that.
Autism Speaks, I want to say that "swallowed by his autism" isn't an OK way to describe anyone. Ever.
Autism Speaks, I want to say that not being able to communicate in ways that others understand does not imply a disconnect with the world as a whole, just with the people who can't understand. There is a lot of world besides just other people. And there are a lot of things that can be communicated through behavior, even negative behavior, if only you know how to listen. "Autism Speaks, it's time to listen." Sound familiar? Well, Autism Speaks, it's time to listen to the behaviors in front of you, because behavior is communication and part of meeting us halfway is understanding that, even if it takes longer to figure out exactly what it is communicating.
Autism Speaks, I want to say that oral speech and communication are not to be conflated. Even in a video about AAC, you are making that conflation. It needs to stop.
Autism Speaks, I want to say that realizing that every autistic person whose hands you got communication into could, in fact, communicate, was, in fact, competent and thinking, should be a step. It should be a step towards presuming competence for all autistic people, for getting communication into the hands of all autistic people. If you are truly out for our best interests (I know you aren't but hey, let's offer up what you would do if you are,) the thing to do is to make sure that every autistic person has access to AAC, that AAC meetings are one of the first things done. Maybe the first. Because an autistic person who communicates in ways that others understand can and should take an active part in deciding what to work on and how. An autistic person who types can speak for themself.
Autism Speaks, I want to say that "these children are normal!" is not the proper follow up to the glimpse of understanding that they are competent. They are wired differently in fundamental ways, they experience the world differently in fundamental ways, just as I do. They are not your illusion of normal, and they never will be, and that's fine. They don't need to be. They are human, and they are autistic, and they are completely distinguishable from their peers, and all of these are fine and good and none of them contradict each other and normal is an illusion that no autistic person should be forced to emulate.
Autism Speaks, I want to say that normal isn't the point. Normal was never the point. AAC is for communication, not for normal. If it were for normal, I would have let people thought I was "just quiet." No, I am a part time AAC user, and my friends have, by and large, seen me use it. I've gone out and socialized beyond what I needed to do, using AAC, because I wanted to spend time with friends. If normal were the point, I would have gone home. None of them had realized speech had gone kaput on me until I pulled out the iPad. But communication is the point, along with everything communication can lead to. Socialization, writing things that move others, telling others about your decisions and, if so chosen, why you made the decision you made. Wants, needs, hopes, dreams. AAC lets us tell of those. It's not about normal, it's about showing the unique and completely distinguishable selves that we are.
"I want to say I think technology has changed my life. I can communicate with the world, and I have choices in my life." Yes. She gets it. Most of this video suggests to me that you don't get it, Autism Speaks, but she gets it. She knows what this is for, she knows how this makes her life better, and those words are the sign of a self-advocate blooming. (Yes, self-advocate. Right now, she is advocating for herself, though if she does as she says she plans, the activist is coming.)
That's not to say there was nothing good here. They showed a range of people. They showed boys and girls, they showed people of color. They showed what looks like reading off what they had typed, which is related to how AAC helps people develop oral speech. (Yeah, AAC use makes nonspeaking autistic people more likely to develop oral speech and to do so faster. Also, for part-time users like me, I find that "reading things I have already typed" lasts longer than "just speaking" when speech is going kaput.) They showed Kayla, the same one who typed about technology changing her life, being at what seems to be college. Yes, college.
But those good things don't make the video as a whole good.
Autism Speaks, I want to say that your metaphors and rhetoric for autism are just as damaging as ever, just more manipulative and better hidden. I'm not sure that's actually better.
Autism Speaks, I want to say that your videos about us aren't even really about us, but about our parents and teachers speaking about AAC as if it is some sort of magic.
Autism Speaks, I want to say that making it about others views of what we do is part of what's wrong with this.
Autism Speaks, I want to say that you need to do better, and I want to say that doing so will require fundamental changes, not just surface paint.
And Autism Speaks, I want to say that I will keep saying these things, and that I and my Autistic brethren will keep typing and speaking.
Autism Speaks, it's time for YOU to listen, and to hear, and to answer. For real.

Autism Speaks, I Want to Say: A Flash Blog

After Amy Sequenzia's piece "Not Good Enough, Autism Speaks," Julia Bascom had the idea to run a flash blog about what we actually want to say, since the AAC users never got to say what they wanted to say. Amy wrote an introduction, which is reprinted from the site of the flash blog, scheduled for March, 28, 2013.

This flash blog is the Autistic community response to the Autism Speaks/Hacking Autism video “I Want to Say”.
The mini documentary is supposed to be about non-speaking Autistic people using AAC to let the world know what they think, what they like or dislike, how they feel.
Instead, the video conveys a not so veiled message that we are not yet the ideal “normal”, we are a “little more acceptable”, but still tragedies. Typical Autism Speaks message.
Besides, Autistic AAC users get very little screen time and we never hear what they want to say. Instead, we hear parents and “experts” using hurtful language to talk about the Autistics portrayed in the video.
If you are a full time or part time AAC/FC user, if you are an Autistic who does not use AAC but believes that all Autistic voices must be heard, or if you are a non-autistic who really wants to listen to what Autistics who use AAC, and all Autistics, want to say, let Autism Speaks know. AAC gives voiceless Autistics a voice and we will not allow Autism Speaks to silence us, again, and keep us out of the conversation about us.
Not good enough, Autism Speaks. Not when you use what gives us a voice to send a message that hurts us.
-Amy Sequenzia

 So be prepared. March 28, we write. (Or we hit publish on something already written. That's what I'm probably doing so as to make sure it's the right day and all.)

Still Not Enough, Autism Speaks

Yes, I saw your change to your news post.
You're not done.
I know you hate apologizing, but you absolutely, 100%, can not consider your error fixed until:

1) You make it clear that it was Autistic activists who made the change happen. (No, self advocacy community and then saying autism activist group doesn't make it clear.) There are some acceptable variations, but we're looking at something like this:

Updated to reflect the efforts of the Autistic community:

Thanks to the efforts of an Autistic-run Flash Blog, Google officially changed the search results....

You're going to have to use the word Autistic (important capital A is important) to describe us, and you're going to have to say the event was Autistic-run. This is not negotiable. Calling us people with autism is unacceptable, calling us self-advocates is incorrect in this context as we were not simply advocating for our own needs. So... you're going to have to edit that article again. You should probably acknowledge  that it's been edited twice, not once, at that point.

2) You apologize for the error, publicly. This is also not negotiable. You can do it on the same post that is used to satisfy part 3, if you want. That would actually make sense.

3) You re-share the corrected post. Otherwise people won't actually see the fix, and fixes need to have the same reach as the mistakes. That means a new Facebook post and a new tweet, not just comments on the original posts. Also not negotiable.

Exact wording of the re-edit is negotiable, but you're going to have to call us Autistic in there, blatantly say that Autistic people ran and organized the flashblog. You can still use person-first language for all the references to autistic people/people with autism who are not the flashbloggers, but you may not use it for us.
Exact wording of the re-share and apology are also negotiable (as is their status as separate posts or as one combined post) but you do need to do both, and the apology needs to be for the fact that you did something wrong. Apologies for offense taken do not count.

And yes, I am holding you to a higher standard of correctness than the news outlets. News outlets are just reporters. You claim to be advocating for us, which means you should know better than them.

Whose Opinion Matters?

Trigger Warning: ableism, silencing, inspiration porn

A big piece of privilege, I think, is that you get to define things.
You get to define whose opinions are and aren't relevant in discussions, even discussions where, by rights, your opinion should be irrelevant. But it's not, because you get to define it not to be.
And you can define the people who are actually affected as having too personal an interest, as not being objective.
And they are silenced.
We are silenced.
It happens all the time.
Or you write the definitions of actual things. Who writes the dictionary? It's not free of bias. It's written by abled rich white men. They define words so as to make themselves correct.
And so as to make prejudice against the privileged groups, you know, the kind of prejudice where you really can't do anything with it? It's on the same level as the institutionalized oppressions,  uses the same words as the discrimination where people literally get away with murder.
And when we try to speak, it is prejudice against them.
We are silenced.
Or inspiration porn, since that's a recent issue, what with the basketball video going around.
Privileged people define it as inspirational. They define this sort of thing to be sportsmanship. They define it to be good, because it makes them feel good. They define making a big deal, a viral video, of what shouldn't be a big deal but somehow becomes one when the manager is developmentally disabled, as wonderful and worthy of patting themselves on the back for.
They define our offense to mean that we think he shouldn't play basketball, that he shouldn't have been on the team. (Well, that they shouldn't have put the manager in. Which, if it's not a tradition at that specific school, they should have at least run it by him first, but if he'd been asking to play it's reasonable play him.)
That's not our offense.
We've played team sports. Neurodivergent K played basketball, even. (I only ever played softball and Ultimate that could really be called team sports, though I was on teams for other things.)
The way the video was done is offensive.
The fact that people patronize the player is offensive.
The fact that the video "about" him and his moment isn't really even about him, but has him as an object that other subjects act on, is offensive.
More than offensive. Perpetuating actual oppression.
Or another recent issue, Autism Speaks and their erasure of Autistic people from our own activism.
Our refusal to be erased gets redefined as being about wanting credit. One parent said that if we were doing it because we wanted credit, we were doing it for the wrong reason. Care about reasons or don't, take your pick. If you care only for results, not reasons, then that argument can't even be made, and if you care about reasons, care about the reasons we were erased. Care about the reasons erasure is bad. Care about the rhetorical foundations that make erasure seem natural, and be prepared to tear them apart brick by brick.
Privilege means getting to have it both ways, though. Misrepresented reasons for activism matter, but actual reasons for erasure and the erasure itself apparently don't. (Our activism is done for the results. One of the needed results is, in fact, that we be seen as the active participants in our own stories that we are, which means erasure needs to be protested as a part of our activism. Not as a reason for the other bit of activism, but as a piece all its own.)
We don't even get to define our own reasons for activism. We don't even get to define what helps us and what hurts us. Privilege means holding the power to define terms and to define the reasons for actions, even the actions of others.
It means being able to tell Autistic people that their demands not to be erased is overlooking the cause (of autism.)
We are the cause.
But "It's not about you." (us)
Our opinions don't matter, even when it very much needs to be about us, even when it very clearly is about us, even when we are the cause, our opinions and stating them is somehow detrimental to the cause.
Whose opinions will we care about? 

Is It Really THAT Hard?

Trigger warning: Erasure/objectification, passing reference to murder of disabled people, suicide

Is it really that hard to say "Autistic people did A Thing," or even "Autistic advocates did A Thing"? Is it really that hard to write Autistic people doing things, Autistic people as the protagonists instead of the quiet objects to be acted on?
Those were rhetorical questions, by the way. The answer is no, in case you were curious. If you think the answer is yes, or if your writing suggests that the answer is yes, that means that you are part of the problem, in case you were wondering. You probably weren't, though. You need to hear it even if you weren't wondering.
If you don't know how to write as as active agents in our own lives, you should step aside. Let us tell our own stories ourselves- we will tell ourselves as people who do things. We will say what it is we want to say, using oral speech, using AAC, using other means, however we have to. We will tell you.
We will do. We are doing. We are active in our own stories.
Autism Speaks disagrees. Disability Scoop disagrees. Autism Speaks writes the Google event as a thing that just happened. Disability Scoop says it was autism advocates, apparently unwilling to say that Autistic people did a thing. But we did.
Both have histories of this.
Disability Scoop reprinted an article where a support line was made because they didn't want what "happened to Elizabeth Hodgins" to happen to another mother. Passive and active, subject and object. Elizabeth was not the object in her choice to murder and then to kill herself. When we do things, it is written as things happening to us. When things actually are happening to us, they are apparently written as happening to the people who did it to us.
Autism Speaks made a video about AAC called "I Want To Say" but never let anyone use their AAC on film to say it.
The old "I Am Autism" video, the old "Autism Every Day" video. Both of these have the autistic person as objects, in their way. Objects that autism acts on, then objects that their families act on in an attempt to take them back.
Passive objects.
In their rhetoric, we must always be passive objects.
And when we aren't?
They change the story so that we seem to be.
Is it really that hard to say Autistic people did something? New Jersey News doesn't think so- even when it was more about Google and the organizations, it was still clear that Autistic People Did A Thing. Their first article, the best coverage I have seen yet in a "news" source, was the story of us doing a thing, and by the way, Google listened! It was, in fact, the story of Autistic people doing a thing so well that we made Google do a thing.
Is it really that hard to say Autistic people did a thing? Autism Speaks and Disability Scoop seem to think so.   So we should make it even harder to shut us up than it is to say we did a thing. We did just get Google to do what we wanted, after all. 

Autism Speaks Comment Screenshots

Trigger Warning: Autism Speaks, all the things they do including eugenics and erasure
I know they have a tendency to censor comments, so... screenshots! I told them I was taking screenshots, and here's my proof that I really did.
If you want to use these screen shots, credit to Yes, That Too and link to this post. Feel free to do that, the point is for these to get used.
(The reason that names aren't censored is that all of the comments are posted on VERY public pages.)

While not on Autism Speaks website or Facebook page, these are also relevant.

And here are screenshots taken by Kristen Guin.