Disability and Representation

Changing the Cultural Conversation

What Autism Awareness Means at Autism Speaks

Autism awareness. Just when you think it couldn’t get any more annoying, it does. And it’s only April 2nd.

Apparently, the folks at Autism Speaks, in their infinite wisdom about all things autism, decided it would be an excellent idea to spend good money (you know, the kind that might actually go for supports and services and other boring and unimportant things) on a useless piece of technology. How useless?

Very useless. This technology allows people to imagine how parents might feel when their autistic kids don’t make eye contact with them.

Yes. It’s a simulation exercise to make people aware of the utter heartbreak of having a child who struggles with eye contact. Except, of course, in this video, the child isn’t struggling. The child simply does not make eye contact at all. Ever.

Take a look:

Source: Autism Speaks, Ad Council

What’s this video about? It’s about how other people feel about autistic people.

It’s not about how autistic people feel when others try to make eye contact. It’s not about why autistic people have difficulty with eye contact. It’s not about why autistic people often avoid eye contact. It’s not about why eye contact can be emotionally and neurologically overwhelming for autistic people.

No. It’s all about what a bummer it is for others that we have this disability at all — if lack of eye contact can even be called a disability. In some cultures, too much eye contact is considered rude. Are people in those cultures crying their eyes out over a lack of sustained eye contact? It’s doubtful.

But of course, Autism Speaks’ message isn’t about understanding. It’s about awareness. Of how other people feel about us.

And it’s utterly shameful.

© 2013 by Rachel Cohen-Rottenberg

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    22 comments already | Leave your own comment

  1. 4/2/2013 | 9:03 pm Permalink

    Did you notice how happy all those people look and that some of them are holding drinks?

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  2. 4/2/2013 | 9:12 pm Permalink

    I see a kid worthy of the respect, love, and acceptance that all kids deserve, not someone who owes me something. (aka eye contact, physical affection, etc.)

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  3. 4/2/2013 | 9:58 pm Permalink

    Oh lord, this is ridiculous.

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  4. 4/2/2013 | 10:01 pm Permalink

    No words. Nope. None.

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  5. 4/2/2013 | 10:34 pm Permalink

    This is absolutely appalling, I was sickened watching this video. “Try to make eye contact with this girl.” All that’s missing is the ability to grab her chin.

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  6. 4/2/2013 | 10:57 pm Permalink

    This offends me. I have autism and Asperger’s. This trivialises the autism spectrum and lumps every person into the one basket. Additionally, it assumes that everyone reaches a certain age where upon autism magically disappears . There are hundreds of thousands of people; if not millions, walking around with undiagnosed autism. Autism is not about SOME children’s inability to make eye contact-it extends far beyond that. Indeed, this kind of thing; where autism is presented as some cute, endearing – but you’ve gotta to love them attitude abounds from one end of the globe to the other. Generally the people behind this are parents, special education teachers, people with other disabilities and or disability workers of all levels. This does not help; it does not expand awareness of autism at all – rather it increases the discrimination and lack of acceptance towards us. The group ‘Autism Speaks’ was started by parents, is staffed and supported by parents and, as far as I have been able to establish-and I am happy to be corrected, does NOT have a majority of staff with autism or Asperger’s. Odd that, places like blind groups manage to become leading employers of people with vision difficulties having boards and staff often made up entirely of people who are blind or vision impaired. Yet all the autism community has is large numbers of parents’ clubs presented under various guises.

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  7. 4/3/2013 | 12:02 am Permalink

    What in the effing what? Is this some kind of seventh circle of hell art installation?

    Grab a drink and some canapes, and try to force a child to look at you! Bonus! If you can get her to bark like a seal, you’ll win a free “Light it up bleah” coffee mug, and the chance to make a virtual autistic teenager put on a shirt with tags still in it.

    In some people’s hands, autism awareness is a horrifying thing. Hence I will send you many beautiful spoons from many countries, which are all clean, organized, and nicely polished. By adorable kittens!

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  8. 4/3/2013 | 12:47 am Permalink

    I recently posted about this topic. Please don’t pass this along to A$ because it is attempting to explain gaze aversion from the autistic person’s point of view. There is no pity here for those poor parents who suffer so much from having spawned an alien being.

    http://www.mfw.us/blog/2013/03/24/gaze-aversion-an-autistic-adaptation/

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  9. 4/3/2013 | 2:05 am Permalink

    No words. I am shocked.

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  10. 4/3/2013 | 3:08 am Permalink

    If they made a similar advert showing the devastating effects of a visually impaired child who never saw his parents’ faces or a quadraplegic child who never hugged, there would be a justifiable outcry. Demonizing autism should cease.

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  11. 4/3/2013 | 6:55 am Permalink

    What irritates me the most about this is that the very same technology could have been used for a really awesome simulation of why eye contact is difficult for autistics.

    My own idea of what could’ve been done:

    The screen shows a neurotypical person, constantly urging you to look him in the eye. But whenever you do actually manage to look him in the eye, everything goes all glitchy. The video gets all bright and staticky. The audio gets all distorted, to the point of unintelligibility. And the only thing that gets the distortion back to a manageable level is…not looking him in the eye.

    But no, a useful demonstration like that wouldn’t fit into Autism Speaks’ idea of “awareness”…

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    • 4/3/2013 | 11:39 pm Permalink

      This is a great idea. While attending a workshop for teachers, the presenter gave an oral test to the group. But while she was speaking the questions, the had a loud hum playing over loudspeakers making it very difficult to hear her. Afterwards, the explained that this is what it is like for a child trying to listen and learn in a classroom. Your idea is very similar. In a milder form, I have heard that looking someone in the eyes is just so distracting because you start looking AT the eyes and the face around it where you can’t focus on the conversation. The face becomes a distraction. But I can see where in a more extreme case, your description sounds very valid. I was taught to look at the bridge of a person’s nose. It makes it easier to not look at eyes and the other person can’t tell you are not looking at their eyes.

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  12. 4/3/2013 | 8:18 am Permalink

    I think it really says a lot about Autism Speaks that instead of getting an actual autistic person to talk about eye contact, they built a fucking COMPUTER SIMULATION of one.

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  13. 4/3/2013 | 9:51 am Permalink

    FAIL.

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  14. 4/3/2013 | 9:59 am Permalink

    This gets them more donations. If they were actually to do something to help autistics, what would that achieve?

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  15. 4/3/2013 | 12:44 pm Permalink

    Why haven’t I ceased to be amazed? Why do I continue to be shocked? I don’t know. I do know that this video makes me ill. It’s triggering in that it reminds me of childhood when I had to endure my parents’ social lifestyle and what felt like the nearly constant questions, judgments, and demands to smile, make eye contact, and be less sad looking. Y’know, I’m actually enraged at this! Seeing these so-called normal people, drinks in hand, trying to maintain this holy grail of eye contact and failing! Oh, the pain of it! Shame on them. Wow. I really am horrified. . .and I’ll stop babbling now, even though I feel like I have a right to my horror and a surplus of words and feelings in the face of this ridiculous waste of resources and proof of idiocy.

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  16. 4/3/2013 | 3:42 pm Permalink

    This makes me ill. I shouldn’t be amazed at the insensitivity… yet somehow, I am.

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  17. 4/4/2013 | 7:12 am Permalink

    Think they got the text on the floor a little bit wrong here… Should read:

    “This girl is neurotypical. You’re not. Feeling a little uncomfortable? Unwelcome? Imagine nearly everyone you meet reacting to you this way at first. At best.

    Autism Acceptance – It Starts With You.”

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  18. 4/5/2013 | 2:36 pm Permalink

    Just watching this makes me uncomfortable. She obviously doesn’t want to make eye contact, so why can’t you respect that and leave her alone?! Instead, seems like the message is, “If someone isn’t looking you in the eye, you should do everything you can to force them to. What a fun game! But it’s so frustrating if you can’t win, right?” Ugh.

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