I heard about this right before bed last night, and in the mean time the Autistic Community has made many valid points. Here’s the Run Down, and the Round Up
The Run Down
AutismSpeaks sent out a call for video submissions in a way that was fairly innocuous- in fact, it used language such as “a bright spot on Autism” that might indicate something positive and uplifting. You can see the call for submissions here.* This was for a United Nations-Autism Speaks conference.
Red flag number one (other than the fact that it’s an AutismSpeaks production) is the release forms.* This is for release of the footage parents submitted, and includes that the signer of the release is signing for friends and family as well as themselves. Now, I might have this wrong, but everytime I’ve worked with a photographer or with a non-profit who was taking photographs for publicity projects, if a release form was not signed by even ONE adult (or parent of a minor) depicted, the entire photo was a wash.
In this case, they might be safe as the clause does indicate that the signer is acting on behalf of everyone in the video, though it is phrased as the signer giving permission for the images of self, friends, and family. It does not say that by signing it they are saying that they have aquired permission and thus are acting on behalf of said friends and family. So even if a friend or family member did not give informed consent (if an adult, or parent, have read the release and consented to the signer acting on behalf of the party) it ends up being the signer’s fault and is sealed by this final phrase: “I further represent and warrant that I
have the right to give this consent and no other consents are required.”
Wording means everything in legalese.
The form also uses wording that would tip off some people, such as “global health crisis of autism” but perhaps not your general parent, particularly those of newly diagnosed children.
The actual video is. . . well, the only word I can think of is “appalling” and even “blatently Offensive.” (If you don’t think you can handle the video, the wonderful Codeman38 has transcribed it on the Livejournal Aspergers community.)
My response (in 500 chracters or less, as that’s Youtube’s character limit):
I find this video offensive, not only on behalf of myself, but also on behalf of my grandmother, an Aspergers Autistic, several Aunts, and even my cousin (Dx’d HFA, now Dx’d Aspergers due to early social supports and encouraging interests in sports as a family).
I am offended on behalf of my mother, whose love & pride & acceptance of ALL parts of who I am allowed me to progress even when instructors and Support Staff said I’d fail.
I am offended, & must say that AutSpks does NOT Speak for me.
I’d encourage you to go ahead to the site link and leave a comment and/or rate DOWN this video.
I’d like to additionally add that I’m disappointed in both Alfonso Cuaron and Billy Mann for their involvement in this. I have in the past admired Cuaron’s style, so this was even more of a disappointment for me. Shame on you both.
Community Response (Or the Round Up)
The community has had a huge response. Here are some responses (and feel free to link me to others!)
Cat in a Dog’s World has a fabulous response with some ethical questions and why we object.