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 http://yesthattoo.blogspot.com/post-specific-URL.

Wednesday, August 22, 2012

You're not a bad person because you were fooled. Just fix the problem once you know.

For all the people who take being called out on supporting Autism Speaks as a personal affront: It's not.
It's telling you that they are actively harmful to autistic people, and that the correct course of action at this point is to stop.
If you donated to them before you learned: That doesn't make you a bad person. It just means you were fooled. They try pretty hard to fool people. I mean, they have a guy whose job is to deal with social media crises. They spend lots and lots on advertising. They make autism look like a tragic tragic thing that we need to fix, and yesterday. They make you feel REALLY AWESOME and like you're helping people by supporting them.
The problem is that you aren't. You're paying for advertising, and you're paying for offices in expensive areas, and you're paying the salaries of executives, and you're paying for research that many autistic people don't care about, and you're paying the salary of that guy who deals with social media crises. 4% of your donation is given back in grants to help actual autistic people, which isn't much of a much. To put in in perspective, Ben and Jerry's (not a charity, and ICE CREAM COMPANY) puts 9% towards charitable causes. That's right. Ben and Jerry's spends more of their income helping people than Autism Speaks does. So if you want to help people, go buy an ice cream. (Go buy Ben and Jerry's ice cream for an ASAN meeting? I bet they'd love that!)
Knowing just these problems (there are more, by the way), is it hard to see why autistic people might not want you supporting Autism Speaks? And if we deal with this a lot, might we sound kind of frustrated when we explain why they actually kind of suck? Yeah. Most of us do. I go in fairly polite (not because I think it's wrong to go in angry. Just because I think having angry, polite people, and politely angry people ALL is a good idea, and I know that angry is covered, and I haven't dealt with so much of it that my polite reserves are angry.) But sometimes, when people don't get it, I will go in with the all caps and say that actually, you are doing something bad, because whatever your intentions might be, AUTISM SPEAKS IS BAD FOR AUTISTIC PEOPLE. Sometimes that even brings them up short enough that they listen. Who knew?

So here's the point: If the people an organization claims to help are coming to you and saying that you shouldn't support them, and they sound frustrated, it's probably because this organization does not actually help them and they are sick of getting ignored when they bring this fact up. It also means that you should not ignore them, call them rude for pointing this out, or refuse to listen because rudeness (regardless of actual rudeness or not- if someone said "Get the $%#@ off my foot!" you might bring up the rudeness, but you would do so AFTER GETTING OFF THEIR FOOT if you're a decent person, and the problems here are much bigger than the problem of someone standing on your foot.) What you should do is listen to what they say is wrong with the organization, think about it, and then, since this is the group of people you went in wanting to help, figure out something you can do to actually help. It's not that hard.

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