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

Saturday, November 3, 2012

Important, Just Not MOST Important

Sorry, parents. Your voices, your points of view on autism, they are not the most important voices. They are important voices. They are good voices to hear. They are already pretty well-heard, too. Most autism charities base their actions to your ears, your voices.
Here's the thing. The voices, the points of view, the wants, the needs of actual autistic people are more important than those of the families, and people don't get that. It doesn't mean "Oh, we need to ignore all parents," though I'm more than happy to ignore any parents who think listening to autistic people means ignoring parents. It means "When autistic people say something, we need to listen." It means that if autistic people say that a certain therapy gives a lot of them PTSD (That's one of the big problems with ABA, by the way,) it means that you need to examine why that's happening and change what you're doing so that doesn't happen. If that means scrapping the therapy, that means scrapping the therapy. If it means putting the autistic person in charge of what the goals are, taking stimming off the list of "problem" behaviors, allowing for breaks, and either completely eliminating aversives or making it so that the worst one would still be an acceptable punishment for a neurotypical child, that's what you do. (I suspect that those changes would prevent the ABA-induced PTSD issue, but I am not sure, and no, I do not think you should test this on anyone who does not consent to testing it since that's another breach of ethics and another failure at self-determination.)
I am not and will not say that we need to silence parents- we don't, and it would be a horrible mistake. But we need to make sure that autistic voices are heard the loudest in what is done to help autistic people. Autistic people are the most important voices in discussions about autism. That's the way it is, and we need to act like it.
Families might read this and say, "But you need to hear us!" Yes, we do. And we already hear you. You're the ones running autism organizations. You're heard. You're using the fact that you are heard and the fact that you want to stay heard as a reason to silence us. And don't tell me that "you aren't like that." If you feel the need to enter the conversation that way, it means you are like that. It means that you aren't listening to what autistic people want. If you're not like that and want to do something, talk to the parents who are like that. Tell them to stop.

4 comments:

  1. I completely agree! I am a parent of two autistic kiddos. My oldest who is 5 just wasn't getting it from OT and speech. Could she tell me? No. But, I could read her actions/moods. I watched her through the two way mirror and thought to myself "why are they teaching her the same puzzle/cutting with scissors? Don't they (the therapist) get that she is a human like them....she is not just a body without verbal words. I had to get the idea out of my mind that therapies are what's best for her. No, they are not. There is nothing that we can't do for herself ourselves without the humiliation of her thinking she isn't good enough for anything other than being a puzzle maker. I have also lost friends, and a support group because I refuse to say my children are "with autism, effected by autism, have autism." They are autistic! But, no tears shed here, I just formed my own group, hoping to help other parents that being autistic is not any different than anyone else. We all have some sort of autistic trait, I know I do. Anyway, sorry about the long conversation. I just really enjoy your blog. BTW, I am not saying I am the exception when it comes to parents and being my child's voice. I know I have a lot to learn, but my teachers are helping me everyday, sometimes they teach too much in a day and other days, they are a little slower to teach. After all they are only 5 and 4. :)

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    Replies
    1. Hey, what you're doing right now is the reason that parents get an "important" at all. This kind of long conversation is totally cool. I like questions too :)

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  2. Thank you :) I will remember that. I often use your blogs and post them on my Facebook page (Because they chose us) I like to use your insight as a tool for others. I will keep you in mind if I have any questions. Keep on doing what you are doing. You are a voice not only for autistics, but for parents! Christine

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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.