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

Sunday, November 18, 2012

Uh... That Doesn't Look Good.

So, does anyone know what Autism Rights Watch is? They popped up pretty suddenly. They've only got about 260 likes on Facebook as I write this, which isn't much for an autism advocacy or autism activism organization.
Their 503(c) is still pending, which means they've got to be pretty new.
And... this is the really interesting thing. Autism Speaks and ARW have rather similar terms and conditions in certain areas. By similar, I mean the same with Autism Speaks replaced with ARW, and the evidence that that's where they got it? One spot where it says "ARW Speaks" in the terms. Have a screen shot:

Yes, that worries me.
A legitimate self-advocacy organization would know the problems with Autism Speaks. Sure, a budding one might copy terms from another organization, but if they were really what they are trying to present themselves as, they would copy from someone else. They would copy from someone who is NOT Autism Speaks. Maybe they'd copy from not-autism-speaks or something. Internet copyright things and terms are common enough that they wouldn't even really need to get it from an autism organization if they wanted to be really non-partisan in their choosing.
I don't know. Point is, I don't trust it.
I don't trust anything that even smells like Autism Speaks.
And this group? Well, it's not the first time Autism Speaks has worked with the people who are running Autism Rights Watch.
Sure, they say that they do not support research for a cure, but that doesn't mean I trust them. I don't trust Autism Speaks not to try making a puppet that takes the anti-cure stance in order to compete with someone Autism Speaks doesn't really like (ASAN, perhaps?) I know Autism Speaks has helped fund other projects the same people starting Autism Rights Watch have done. It's not exactly a way to earn my trust, this stuff that I'm seeing.
And of course, they talk about how "sickening" the fighting between ASAN and Autism Speaks is, but I've only ever seen this on articles that portrayed ASAN well. That says something to me- it says that they don't really think ASAN is doing anything good. Complaining about fighting between two organizations only on the page of one is a pretty clear taking of sides. That's what they're doing. Here's one of their posts:

I quite like the "stop talking over us" comment they got on it. Someone noticed that they're condemning the "being pissed at Autism Speaks" thing, which, well, we have every right to be. There's a whole lot of stuff they never apologized for, including Autism Every Day and I am Autism.
And they claimed Henry's success as a victory for Autism Rights Watch. They did do some stuff, but it's not their victory. It's Henry's victory. I don't trust an organization that claims a victory as theirs when they joined it fairly late in the fight. I wrote my post about standing with him and started posting about it and sharing the petition a good bit before they did, and I was late to the party as far as people blogging about it goes. That's not their victory.
Basically, it's great that they are trying to get people to stop it with packing in France because packing is horrible, but take them with a grain of salt. They're not likely to be who and what they've claimed.
Oh, and just so Autism Rights Watch knows: If you really deplore that kind of fight, you can start convincing me by deploring the supporters of Autism Speaks who do things like threatening the protesters, since that's part of the fighting too, and you can start deploring it on things that portray Autism Speaks well, since you do it so well on stuff that portrays ASAN well. Even-handed deploration or accept that you will not be believed. (And yes, I will delete it if you put your cookie-cutter deploration here. Give me something new or be ignored/get no points.)


  1. We understand your concerns. Be reinsured that we are not connected to ASAN or to Autism Speaks. Thanks for catching the glitch in our terms and conditions. We corrected it immediately. As you said, copy pasting is pretty common on the internet for terms. We are a young organization, we make mistakes and we can improve. We contributed among others to Henry’s success. It is a success for everyone involved including ASAN and ARW. We quoted Henry’s mom statement which clearly includes ASAN. Of course, we would be happy to denounce threats by Autism Speaks on ASAN. Let us know when suck attacks happens. We look forward working with ASAN in the future. We just prefer competition to war.

  2. Interesting that an Autistics group would choose to copy from Autism Speaks of all people, who are known to be litigious against autistic people (look up abscout)...not that they have trouble plagiarizing autistics (hi! I'm still awaiting my apology for that one! Feel free to pass it on!)

    Jussayin. You're shitty liars.

  3. You have a right to protest and to hate us.You have every right not to wish a new alternative. Freedom of speech exists, of course. Yet, libel and names calling won't get you anywhere. Again, we are not ASAN, we are not Autism Speaks. David and Alex told Ari. We provide an alternative to autistics, to their parents and to society. We have every right to disagree with ASAN or Autism Speaks or anyone else. If you see some protest or actitivies of Autism Speaks against ASAN let us know and we will be glad to post the same type of comments.

    As for your lie. We are an international non-profit org. We had foreigners do it. We asked them to write and to look for what is done in autism. They did not have any understanding of US autism politics. It is a rookie mistake and we acknowledge it. Who really cares about Terms anyway ?

    We are no-evil but I think you made your mind already.

    1. You didn't TELL them that Autism Speaks likes to threaten suit against autistics?
      That's the kind of thing that would lead to a pretty significant loss of trust even as an honest error, frankly. It suggests a level of cluelessness about the already extant organizations that isn't worthy of "I'm gonna trust this group."
      Whose lie? I never said you weren't international, and having your 503(c)pending and donations not fully tax-deductible (hi screenshot) means not quite a non-profit here yet.
      And you know what? Telling people to be NICE to Autism Speaks won't make them stop silencing autistics, which means that if you do that, you're helping silence autistics, not exactly a great start. If you are what you claim, it's time to shape up.
      That's not the same as falling in lock-step with ASAN, by the way. It mostly means that when an autistic (ANY autistic) is pissed at Autism Speaks, Generation Rescue, etc, you don't get to tell them that the infighting is bad for the cause and that the cause of autism deserves better. It's silencing.

    2. And yes, I know you get money from Autism Speaks for the Autism Talk TV.

    3. Autism Rights Watch does not receive any funding from Autism Speaks, either directly or indirectly. For your information, Autism Talk TV is a personal project of Alex Plank. ARW is not connected financially to Autism Talk TV or Wrongplanet.

      We don't want people to be nice to Autism Speaks. We just wanted to voice a different opinion, not to silence anyone involved.

    4. 1st thing: Person high up in an organization gets funding from a group for a personal project. People don't like to bite the hand that feeds them. You're not going to get credibility based on the lack of direct donations.
      2nd thing: Great for you. Act like it. Condemning the disputes is pretty close to the opposite of acting like it.

  4. There are much worse things about wrong planet than this.. :(


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.