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.

Thursday, May 17, 2012

An Ad for Autism Speaks


I saw it at JFK International Airport while waiting for the first flight on the way to India. And I wanted to shout at it. I didn't shout at it then, but I sure am NOW! And... I was an adult by the time I was diagnosed, not a child.
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At the left, there is a large, blown up picture of a girls face. She looks asian- straight black hair, black eyes, round-ish face. She was probably looking at the camera or very close to it. At the right, it says ``Every 20 minutes, a child is diagnosed with autism." At the bottom: ``Learn the signs. autismspeaks.org."

Those ``every time X, Y happens" statements are usually meant for fear-mongering, and this looks like no exception. I don't know about you, but as soon as I saw the line about a child being diagnosed every twenty minutes, I was pretty sure the poster would be for Autism Speaks. The organizations I like wouldn't say something like that. They're usually more along the lines of ``I'm a person, not a tragedy." But Autism Speaks seems to want to portray us as tragedies. Can you think of any other reason that they would make that sort of sign, go tell an autistic person who disagreed with them to ``go play in traffic," or spend a huge part of their budget on research for a cure many self-advocates don't want? I think they either see being anything besides normal as a great tragedy or think the best way to get money is to tell it like it's a tragedy. Since it's mostly parent-based awareness that they do, I could believe that it started out as the former. But today? With all the actual autistic people and people with autism (I don't want to leave those of you who identify person-first out!) doing things like living their lives, becoming self-advocates, and shouting about everything  they think is wrong with Autism Speaks? At this point, it's got to be the latter. And the latter is completely unacceptable.

I've seen autism parents defined as those who would like nothing more than to teach autistic children to speak and autistic adults to shut up. I don't know about parents of autistics in general, but Autism Speaks seems like that. They can get kids to say what they're told to say, and they want to be able to claim some success at normalizing us, so the kids have to learn to talk. But they don't want anyone who can think for his or herself telling people what's wrong with their organization, so they want the autistic adults to shut up. To this end, they talk nearly exclusively about autistic children, not autistic people or autistic adults. People who don't exist can't have anything to say. But...

But I exist. But others like me exist. And we have things to say.
So we get dismissed as too high-functioning to understand the problems that the low-functioning face, based purely on the fact that we blog. That doesn't imply ability to walk, speak, cook, clean, or, well, anything except type. Also, there is the (false) high-functioning/low-functioning dichotomy. It's too arbitrary to truly help anyone.
So we get dismissed as too autistic to understand the problems our parents face or those other autistics face. But... it's called AUTISM Speaks. Not parents of autistics, autism. Autism is an abstract diagnosis used to describe autistics, not parents of autistics. So it shoulf be us speaking, if the name is to be believed. The struggles our parents face shouldn't be ignored, but our ability or lack thereof to understand those struggles should make no difference to the validity of our voices when talking about our own lives. It's not as if autism and parenthood are mutually exclusive, anyways. Autistic parents of autistic children exist, as do autistic parents of neurotypical children. And as for the struggles other autistics face? Well, if we don't understand theirs, they don't understand ours, so they should talk and so should we. But... we probably understand theirs better than you do. We live with similar challenges. Not the exact same challenges, since every person is different, and this applies to autistic people just as much as it applies to neurotypical people, but similar ones. And that means we can't be clueless.
So, how about listening to us? It doesn't mean ignoring our parents, but it does mean that if I say ``X is not true for me," you don't get to act as if it does on the basis that Autism Speaks says it should be true. It also means accepting that we are individuals with hopes, dreams, and aspirations of our own, not  self-narrating zoo exhibits or tragedies. It means not making posters that spread fear about us, since few will listen to a group they fear. And Autism Speaks fails on the not fear-mongering count.

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I reserve the right to delete for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things. As long as we stay within those ranges, discussion is AWESOME.