Being erased

Nothing causes me to be angry more than injustice. This can take many forms, and I do my best to fight against it as I am able.

This time, it’s personal. This time, Autism Speaks is attempting to erase us from our own story. Of course, this is nothing new for Autism Speaks, because admitting that autistic people can effect change is completely against everything they try to do.

If Autism Speaks admits that autistic people can do things, you know, not just those “high functioning Aspies”, well that would just destroy the message of tragedy they’re trying to send.

As many of you know, I, along with numerous fellow Autistic people, were upset and troubled by the autofill results that appeared when typing “autistic people should” and “autistic people are”. As such, we participated in two flash blog events, filling in the blanks for ourselves with regard to “autistic people should” and “autistic people are”. As a result, Google took notice. And thishappened.

Fantastic! This is a huge victory! Wellll….yes. But then Autism Speaks reported on their blog, Twitter, and Facebook, giving all credit to Google and erasing the explanation that Autistics had anything to do with it. Have some evidence here, and at that link you can also see the push back by Autistic people (including myself) and our allies.

So far, no apology. A bit of explaining that they didn’t erase anyone, and that they simply reported, didn’t take credit. To that, I say “bull”. I will not be erased from something that I was a part of. I will not allow my (far more vocal) Autistic peers to be erased either.

This is an AUTISTIC victory. It wasn’t parents, professionals, or even allies (as helpful as they were in signal boosting our posts). It was us, the Autistic folks. Do not let us be erased. Do not let Autism Speaks erase us. I demand an apology and a retraction. I’m not letting up.

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9 thoughts on “Being erased

  1. As the mother of one of those “high functioning Aspies” I’m beginning to both be discouraged and take great offense. I keep hearing over and over from self advocacy groups that they need to be the ones speaking, yet discounting the voices of people like my girl… othering her. Making it clear that she isn’t part of your team. Where then does she, and those like her, belong? What am I, and all the other allied parents, doing trying to help her find her voice, lending my own when children are too young to yet know what this fight is about…? Just who is doing the erasing?

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    1. Please explain to me how saying “autistics need to be able to speak for ourselves and parents and professionals shouldn’t speak over us” is erasing anyone. There are people of all ability levels, there are nonspeaking as well as extremely verbally articulate people among us. We come from all sorts of backgrounds, some of us have been diagnosed since we were toddlers and others of us didn’t receive an accurate diagnosis until late into our adulthood. We are anything but a monolith, and I don’t know where you are getting these sorts of ideas that there isn’t a place among us for your daughter.

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    2. No, she IS part of our team…if she wants to be. It’s the people who claim that this movement was accomplished only by “high-functioning aspies,” who are trying to separate her out from the rest of autistic people. Who are saying that whatever she could possibly do doesn’t count for what autistic people can do. They’re the ones saying “she’s only a high-functioning aspie, she’s not a representation of real autism.”

      Some of the people on this campaign were probably “high-functioning aspies,” but they weren’t the only ones, and comments like some that you can probably still see on the Autism Speaks Facebook page are attempting to discredit the flashblog and erasing the accomplishments of other autistic people who organized and participated, by claiming that we’re all “high-functioning aspies” and therefore don’t count in the discussion of autism.

      THEY are doing that to your daughter, not us. She’s as welcome in my community as anyone else is, as far as I’m concerned, if she wants to be.

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      1. Precisely. There was one comment on the Autism Speaks FB page (linked in the post here) that basically said “don’t listen to them; they’re just HF Aspies here to stir up trouble.” If by trouble you mean not erased from our own stories, well, yeah. Even so, we shouldn’t be discredited regardless of diagnosis. I have the label of Asperger’s but was functionally nonverbal outside of very limited circumstances until I was 8. The HF/LF argument is crap, IMO.

        So yes, anyone who is autistic is a part of our community. We don’t seek to exclude anyone on the spectrum and actually work against anyone who does.

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    3. Wait wait wait – Autistic folks say our voices, the voices of autistic folks, are the ones that are most important in discussing autism. Your daughter is autistic. Therefore, is she not one of the autistic voices we say need to be heard??
      The ire at “high functioning Aspies” is directed at the phrasing, not the people being described. Functioning levels are bullshit, here’s why -http://yesthattoo.blogspot.com/2012/05/functioning-labels.html

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  2. so far we haven’t heard your daughter’s voice. but if it’s the same voice as the ableism directed against her, we’re not going to go ‘oh, i guess you’re right. we don’t deserve rights.’ you’re feeling offended, discouraged- good. realize this isn’t about you or your feelings.
    where does your daughter belong? where she wants to be. so far it’s not her voice we’re hearing right now, but you, speaking for her.
    and yes, we are going to be hostile to you and make you feel like you don’t belong because you? the non-aut person? don’t.

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  3. @nelpsandcsmom: I think you may have mistakenly thought the author was casting “high-functioning aspies” to the side. I believe she way saying how Autism Speaks never allows Autistics to speak for themselves, and on the rare occassion AS does bring attention to autisic voices, it lumps them into the category of “high functioning aspies” which obliterates anyone else on the spectrum. In no way do I feel the author perpetuated the idea that high-functioning aspies would not be accepted by other Autistics. Quite the opposite. From my experience reading many self-advocate pages, I actually only see those kind of terms used by neurotypicals. @lemonadeandlemoncake: I fully admit I don’t know everything I need to know about autism. That’s why I come to these pages. I want to keep learning, and internalize ideas that don’t come naturally to my NT mind. I want to be able to ask questions or voice concerns, and have others clarify ideas for me so that I can learn to grow more respectful of my fellow human beings. I hope, in time, you can come to see that not everyone who “doesn’t yet understand” deserves to be treated as “hostile.” I may never belong, but that doesn’t mean I don’t want to hear your voice.

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