Autism Every Day
I have not written in any depth about Stephanie Rochester, the woman who killed her six-month-old son Rylan because she thought he was showing signs of autism.
The best consideration of her case that I have read comes from Emily Willingham, who discusses her own experience with postpartum depression, and the likelihood that Rochester also suffered from it:
The mother, reports say, thought she had postpartum depression and commented to friends about it before she killed her infant. It was severe enough to metastasize into a psychosis that led her to kill her child out of, according to her, a fear that he was autistic. The DA involved in the case recently elected not to try her because of her ongoing mental state. According to reports, she was obsessed with the notion that her son was autistic and that his autism would destroy her life, her marriage, her finances, and her fun. Her husband filed for divorced within days of their son's murder, and he has also filed a wrongful death suit. She was aware enough of her actions to have, according to reports, hidden the blankets she ultimately used to suffocate the child on her final attempt. The story is horrific.
The mother's work experience prior to having the baby included two years working as a counselor at a children's hospital, where she had encountered children with autism. I do not know what the attitude of the professionals or parents at the hospital were about autism. What I do know is that if she had paid attention to any one of the thousands of fear-mongering news media reports about autism, she'd've been terrified if, in her mind, her son were showing signs of it. I know that if she'd paid any attention at all to what some organizations that purport to help autistic people say about it, she'd've been terrified at the prospect. I also know that if she'd read any of the verbiage on the Internet about "toxic" children, "monsters" whose "real selves" were "stolen" from their parents, she'd be terrified. Stories purporting to describe the horrific financial burdens of autism. Stories focusing on the horrific toll autism reportedly takes on marriages and families. Stories with the angle that autism destroys lives.
Actually, though, Rochester's involvement with autistic children went far beyond the occasional encounter:
Rochester told authorities that she worked for two years as a counselor with autistic kids at Children's Hospital and "can recognize the signs of autism." She said she was convinced her son, Rylan, had severe autism.
Children's Hospital Colorado became part of the Autism Treatment Network in 2008.
The Autism Treatment Network is one of the flagship efforts of Autism Speaks.
We know what Stephanie Rochester's attitude toward people with autism was:
She placed a plastic Target bag over Rylan's head as he slept and then put a blanket on top of his face, the affidavit said.
"She said that she had conducted research on the computer and read that carbon monoxide poisoning deaths don't hurt and you just go to sleep," Spurgeon wrote. "She did not want Rylan to hurt."
After a minute, she removed the bag, and Rylan was still breathing. She went downstairs, according to the affidavit, and ate dinner with her husband -- drinking wine and discussing selling their house.
"She and Lloyd talked about how they wanted to have fun in life," Spurgeon wrote. "Stephanie said that she knew they would not have fun while they were caring for a severely autistic child."
It is possible that Rochester's attitude had nothing to do messages she got about autistic children from her work at Children's Hospital. It is also possible that Autism Speaks had nothing to do with any negative attitudes she picked up there.
And-- this is important-- Rochester was not a reasonable person. Even if negative messages she picked up from Autism Speaks did affect her, that would not mean the organization should or could be blamed for Rylan's death.
However, that does not mean that people who are alarmed by this crime should not also be alarmed by the way Autism Speaks has talked about autistic people:
I know that Autism Speaks doesn't put out material like this anymore. I know that Alison Singer, now president of the Autism Science Foundation, doesn't talk like this anymore.
Except on YouTube.
In the three months since I last wrote about "Autism Every Day," the video from which the clip above is taken, it has been watched over 50,000 times on YouTube.
It seems outrageous to me to pretend that this has no effect on how people with autism are perceived. It also seems outrageous to me to leave out "Autism Every Day" when discussing the possible culpability of Autism Speaks in Rylan's death:
It's tempting when these horrifying stories about parents killing their children come out to play the blame game. Indeed, it's something we often can't resist. It's Age of Autism's fault because they present autism as so awful. It's Autism Speaks' fault because of that stupid sentence saying autism is more prevalent than three dreaded diseases. It's everybody who has ever complained about autism. It's everybody's fault but the woman who chose to kill her child. If only there wasn't negative things written about parenting a child with autism that woman wouldn't have done that. She was mentally ill. She chose, whether she was in her right mind or not, to take her child's life. That is not the fault of anyone on the internet, although it is comforting to think so.
I agree with much of what Kim Wombles says here-- it is not anyone else's fault that Stephanie Rochester killed her son. But to pretend that the most dangerous thing that Autism Speaks ever said is that "autism is more prevalent than three dreaded diseases" seems dishonest to me. If Kim wants to defend "Autism Every Day," I would love to read what she has to say. But I ask everyone to please stop pretending it doesn't exist when writing about Autism Speaks and negative messages. At least not while hundreds of people are still watching it every day.
And, in Rochester's case, there is a much more direct link: the hospital at which she counseled the families of autistic children is part of the Autism Treatment Network. The Autism Network is part of Autism Speaks. So, in her own small way, was Stephanie Rochester.
Pointing that out, and asking the people at Autism Speaks to re-examine the attitudes they display toward autistic people is not blaming them for Rylan's death. I've tried to make it clear that I believe even in creating "Autism Every Day" their intentions were good. But good intentions sometimes have unfortunate, unintended consequences.
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.
I wanted to make sure all of you saw this comment that Alison Singer left on my last "Autism Every Day" post:
Dear Landon: Thank you for posting this. This material was shot as part of a documentary for NJN but it wasn't included in the final version of the film. We will certainly post this on the ASF website. Thanks again for your comments. -Alison
And now we are Facebook friends.
So that's nice.
I am very happy that the video will get to a wider audience-- click here to watch it.
And that means I'm going to take Alison off the list of recipients to the letters I'm writing, the same as I did when Katie Wright responded. Keeping on the video on YouTube is what I object to, and that's for Autism Speaks to decide.
This is my fourth letter to you about your promotional documentary Autism Every Day. The day I sent my first letter, I got a very nice response from Katie Wright explaining why she wants the video to remain widely available. I have heard nothing from any of the other individauls to whom these letters are addressed. Not only that, but no one associated with Autism Speaks nor the Autism Science Foundation has acknowledged them in any way.
In the time since I wrote the first of these letters, Autism Every Day has been watched
9654 times on YouTube. It is one of the most widely available introductions to autism in the world, and it presents an unrelentingly gloomy vision, one in which "autism" means nothing but hopelessness. It is a horror cartoon, created for maximum shock value, sympathy, and fundraising.
Alison Singer, was the driving force behind all communications from Autism Speaks when Autism Every Day was made, not just a face in front of the camera. She had spent fifteen years producing television before that. When she talks about her daughter in the insensitive way I discussed last week, she is doing it to solicit donations for the organization that paid her six figure salary.
This is what it's like when Ms. Singer talks honestly about her feelings after her daughter was diagnosed with autism:
A moving, honest video about Alison Singer and her daughters.
This is exactly the sort of video I would love parents with a newly diagnosed child to see: one which acknowledges their pain and fear but shows them that there is hope. Ms. Singer says that her reaction to Jodie's diagnosis was complicated by her autistic brother, who was at Willowbrook. We see what a beautiful, well-loved child Jodie is. We see what a truly wonderful mother she has, and hear about how important Applied Behavior Analysis is for her, and for other childen who have autism.
I do not know the source of the video, but I do know this: I was the first person to watch it on YouTube. It has been watched exactly 3 times, and I think those are all me.
And that's the problem. The nightmare vision of Autism Every Day has been seen 724,843 times. And the nuanced version, that not only tells parents that there is hope, but shows them what that hope looks like? The honest version? One autistic guy who has an MS in education has seen it.
A friend of mine asked why I didn't make my own, more positive version of the film. And the answer is that more positive videos are out there-- look, even Alison Singer has made one. But they don't have thousands of dollars of promotion put behind them. They don't have shock value. They get ignored.
I hope that at some point you will stop ignoring me, and the other people who think that Autism Every Day needs to be taken down. One of my reasons for writing these letters is to prove that Autism Speaks has not changed its attitude about people with autism since 2006, and that the Autism Science Foundation is different only in the rhetoric it uses. I look forward to either some type of conversation or your continued willingness to prove me right through your silence.