Thanks very much for your response. I look forward to continuing this dialog. I'm not sure if you have seen any of my previous letters, so I would like to give you the opportunity to read them before responding to you.
I began by asking my readers to watch "Autism Every Day," and then write back to me about their feelings about it. Many had positive ones, and I focused on those in my first letter, which has been been read by over 300 people. In my second letter, which has been read by over 400 people, I focused on the fact that the film ignores what Alison Singer calls "the heterogeneity of the autism diagnosis," and how painful that makes it for parents and autistic people whose experiences are not represented. My third letter (over 400 readers for that one as well) focused on the sequence in which Alison talks about killing her daughter directly in front of her, and the negative messages that sends about nonverbal people and how to act around them. My last letter, which you are replying to, focused on the fact that more positive portrayals are readily available, but they do not get nearly as widely seen. It's only been read by about 250 people, but one of them was Alison, so that was nice.
When someone asks me why a video that was produced five years ago is still a big deal, I ask them to search for "autism" on YouTube. "Autism Every Day" is always the first non-promoted video when I do it. How about you?
That means that when people come to YouTube to get information on autism, "Autism Every Day" is one of the first places they are likely to look.
That means that 726,985 people have watched it on YouTube in total.
Now, more people have watched the Teletubbies video you link to, but it does nothing to contradict the impression given by "Autism Every Day" that all autistic people are nonverbal children, does it? The "Open Your Eyes" video is postive and fun, and has been by almost half as many people as have watched "Autism Every Day." And it's great that it includes adults.
The autism in the workplace videos are very positive. But-- More than twice as many people have watched "Autism Every Day" since I sent you my first letter than have seen the Thomas video since it was posted nearly a year ago. More than ten times as many people have watched "Autism Every Day" in the last month than have watched the True Meaning Jewelry video .
The beautiful "Letter to Jaclyn" has been viewed fewer times since it was posted in May than "Autism Every Day" is in a single day.
That's why I'm writing you these letters. "Autism Every Day" is not just one of the 339 video on your channel. It is one of the most important sources for information about autism on the internet. It has had, and continues to have, disproportionate influence on people's opinions regarding people with autism.
That's why you need to take it down.
I want to close with a comment that Edee posted on my Facebook page:
Here's my perspective. I hope it helps. Building awareness should not tear down what we are building awareness for. Autism poses a challenge for any parent, there is a lot of learning involved-especially in the beginning, but it's not constant screaming meltdowns all day long as the video implied...Its early still for me but I think I'm referring to the correct video. The world didn't end when my son was diagnosed, it just became a lot more interesting. I had to learn to be more creative, more patient, more active, more stubborn, more relenting, more skeptical and more assertive. I do believe that parents with autistic children tend to stick together, but its not just because autism is not something that an NT parent would comprehend as easily. I think the entire disabled community has a culture entirely of its own-we are more active in activities that include and welcome people with differing abilities, our family goes to a Family Dance night that is meant for all people, there are activities that are autism friendly such as a special movie time where the lights are left on and it's quieter at the local theater-as a mother of five its the perfect time to take the kids to a movie-I don't have to worry about a screaming baby or a squirrely four year old. I know more people now with different abilities than I did before, but that is also because I am exposed to a different culture than I was before-I see the same people each week at our therapy session, my son is in a feeding group because he has severe issues with textures and his food options are severely limited-so we see the same people every week, it's hard to not develop friendships with people that you see regularly. It helps no one to show an entirely negative aspect, because thats what people focus on, I get tired of seeing people stare at my son waiting for him to start screaming or something when they find out he has autism. The comments if he's on his best behavior that "he doesn't look autistic" because he's not stimming or having a meltdown are infuriating.
I look forward to your response,
I mentioned the number of people who have read my letters because I want to be clear about exactly what it has taken for me to get a response from your organization:
It was not enough to send four emails to the only address I found publicly available.
It was not enough to post those letters to my website, on which they have been read collectively well over a thousand times.
It was not enough to post links to those letters to my Facebook page, which has over 7500 followers.
It was not enough to post links to those letters on your Facebook page.
It was not enough to call your office.
Twice. And get hung up on the second time.
It required that I actually make an appeal to those 7500 followers to contact you after being hung up on before I got a reply that reads very much like a form letter.
So please be aware that that is what it can take for an adult with autism to get a response from Autism Speaks.
UPDATE: I neglected to mention my appreciation for the support Autism Speaks gives to Autism Talk TV. Alex and company do great work-- I posted one of their videos on the Facebook page just yesterday. But even the most popular video they have produced has been viewed fewer times ever than "Autism Every Day" has been in the last month. And the Wrong Planet URL is .net, not .org
This the first reply I have gotten from Autism Speaks regarding my letters about the film Autism Every Day.
I just expanded the full heading and I must admit it is my favorite part:
|cc||Peter Bell <firstname.lastname@example.org>,
Marc Sirkin <email@example.com>,
Pat Kemp <Pat.Kemp@autismspeaks.org>
|date||Fri, Sep 16, 2011 at 7:51 AM|
|subject||FW: "Autism Every Day"-- Fourth Letter|
|Important mainly because of the people in the conversation.|
"Important mainly because of the people in the conversation"
That's the real response, folks.
Here's the text of the email:
Thank you for your email. I am sorry we did not respond earlier, but this is the first time I am a seeing your correspondence. I understand you also phoned the office today. Unfortunately I am traveling and not easily reachable.
Autism Every Day was made when Autism Speaks was first founded. It depicts what many families experience with autism in a real and powerful way. It was accepted by the Sundance Film Festival back in 2007 as a special screening, which brought great attention and accolades to it. We received an overwhelmingly positive response from parents when we launched the film. I understand that some people may react negatively to the film, but our intent was never to offend. I’m sorry you were offended by it.
But we do also promote many other films, shows and videos on our website. For instance, we partnered with HBO to promote Temple Grandin’s biopic. We hosted free screenings for families in different locations around the country. We also promoted the film Adam and interviewed the actor who portrayed a young man with Asperger Syndrome. We also support Autism Talk TV on wrongplanet.org. (Note: the actual address is wrongplanet.net) Alex Plank, who runs the site, does some fantastic video interviews on autism from the perspective of a young man on the spectrum.
Please check the following links for some other examples:
Short song/video we promoted by a young man who worked with individuals on the spectrum
Teletubbies promote compassion Most of these didn’t have promotional campaigns around them. Certainly the first one had no financial support – simply the power of social media and the desire of one man to share his story. We promote stories like these every single day on our website, blog, facebook page and through our amazing volunteers. Our In Their Own Words column is a great example of this – it’s written by invidiuals with autism and their families members to share lifes ups and downs with the autism community. So many of them are inspiring and hopeful. http://blog.autismspeaks.org/ I hope you take a minute to look through some of this and to visit our website and facebook page. I think you’ll find that there is a lot more to Autism Speaks than one film created 5 years ago. Thanks again for reaching out to Autism Speaks, we welcome the opportunity to open up a dialogue with you. Best, Dana Dana Marnane
Vice President, Awareness and Events
1 East 33rd Street, 4th Floor
New York, NY 10016
Teletubbies promote compassion
Most of these didn’t have promotional campaigns around them. Certainly the first one had no financial support – simply the power of social media and the desire of one man to share his story.
We promote stories like these every single day on our website, blog, facebook page and through our amazing volunteers. Our In Their Own Words column is a great example of this – it’s written by invidiuals with autism and their families members to share lifes ups and downs with the autism community. So many of them are inspiring and hopeful.
I hope you take a minute to look through some of this and to visit our website and facebook page. I think you’ll find that there is a lot more to Autism Speaks than one film created 5 years ago.
Thanks again for reaching out to Autism Speaks, we welcome the opportunity to open up a dialogue with you.