Support autism acceptance, not autism awareness


Support autism acceptance, not autism awareness
The Issue
I am a proud autistic person. On Sunday, May 29th, a friend of mine pointed me to a Tumblr post indicating that Christopher Jackson, one of the stars of the Broadway musical Hamilton, supports the group called Autism Speaks. About half an hour later, another friend of mine informed me that Lin-Manuel Miranda, the star and writer of Hamilton, also supports the group. This news horrified all three of us (as well as everyone else I told), because, while Autism Speaks is the so-called "leading autism charity," taking in millions of dollars every year, most autistic people hate the organization because of the way it spends its money and the messages it sends about who autistic people are. According to their 2014 financial report, about 18.2% of their available money—just over 21 million dollars—goes into their research program (mainly in the form of grants), which they define as "research into the causes, prevention, treatments and a cure for autism." However, most experts agree that autism is a genetic condition which can neither be cured nor prevented (not to mention the fact that autistic people don't want to be cured), so these millions of dollars are practically being thrown away. As for autism "treatment," Autism Speaks supports "therapies" such as Applied Behavioral Analysis or ABA, which is promoted as an evidence-based system of positive and negative reinforcements that helps, but, as resources written by professionals, parents, and, most importantly, autistic people who have been through the process will make clear, ABA truly is more like obedience school for humans which aims to "cure" the "symptoms" of autism and make autistic people appear "normal,” which is not what autistic people want. In general, autistic people are proud of who they are and do not want to change; rather, they want acceptance from the world around them. If this weren't bad enough, 63.5% of Autism Speaks' funds—almost 73 million dollars, more than all other costs combined—goes into their awareness program, mainly in the form of advertising (which, incidentally, receives nearly 47 million dollars, more than double the money of the entire research program), and this is arguably far more dangerous than the research because of the messages these awareness campaigns convey. Their "I am Autism" campaign in 2009 compared autism to terminal diseases and claimed that autism will ruin marriages, families, and, "most importantly," the autistic people themselves. The idea of autism's being a ruiner of lives, a demon which must be destroyed, helps nobody except those profiting off of those messages. Even the families, for whom Autism Speaks claims to care so much (despite the fact that only 4% of their money goes directly to families) are hurt by these messages, for they seek to turn human beings in their homes into monsters. And yet, despite this flushing of money down the pseudo-science drain, despite their spreading of this chilling message about what autism "is" and "does," Autism Speaks still receives millions of dollars every year, has multiple big-name corporate sponsors, holds charity walks all over the country, and, every April, draws attention to itself with its "Light It Up Blue" campaign, where, to quote them, "thousands of iconic landmarks, skyscrapers, schools, businesses and homes across the globe unite by shining bright blue lights in honor of the millions of individuals and families affected by autism. Individuals everywhere wear blue in honor of our community," and this is the campaign Lin-Manuel Miranda and Christopher Jackson were supporting. Mr. Miranda and Mr. Jackson, I know you mean well. I know you want to help autistic people. But, as an autistic person myself, I can tell you that, with an agenda of marketing fear and funding a lost cause overseen by a board with only two autistic people and a history of autistic people resigning from said board because they felt ignored, Autism Speaks does not speak for me. It does not speak for my fourteen year old best friend, whom you made cry with your support. It does not speak for my friend’s autistic classmate who is humiliated by his teachers for being himself. Rather, Autism Speaks has silenced autistic voices time and time again, and I urge you to redirect your energy, your effort, and your money to an organization which does not, such as the Autistic Self-Advocacy Network or ASAN, a group which is led only by autistic people under the motto “Nothing About Us, Without Us.” We want your support, Mr. Miranda and Mr. Jackson. Your work has made you an inspiration and I owe you personally in ways I can’t begin to explain. Your support of Autism Speaks has not caused me to lose faith; rather, it gives me a reason to do what Hamilton himself would do—write; educate; tell the world and tell you what we need. As for the rest of you here on Change.org, I ask that you join me in telling these two great people that they can be greater, by signing this petition and sharing it on social media with #Ham4AMs (AMs being Autistic Mothertruckers, which is what we are.) Join me in promoting autism acceptance. Thanks and best wishes, Ofelia Cohen-Odiaga

The Issue
I am a proud autistic person. On Sunday, May 29th, a friend of mine pointed me to a Tumblr post indicating that Christopher Jackson, one of the stars of the Broadway musical Hamilton, supports the group called Autism Speaks. About half an hour later, another friend of mine informed me that Lin-Manuel Miranda, the star and writer of Hamilton, also supports the group. This news horrified all three of us (as well as everyone else I told), because, while Autism Speaks is the so-called "leading autism charity," taking in millions of dollars every year, most autistic people hate the organization because of the way it spends its money and the messages it sends about who autistic people are. According to their 2014 financial report, about 18.2% of their available money—just over 21 million dollars—goes into their research program (mainly in the form of grants), which they define as "research into the causes, prevention, treatments and a cure for autism." However, most experts agree that autism is a genetic condition which can neither be cured nor prevented (not to mention the fact that autistic people don't want to be cured), so these millions of dollars are practically being thrown away. As for autism "treatment," Autism Speaks supports "therapies" such as Applied Behavioral Analysis or ABA, which is promoted as an evidence-based system of positive and negative reinforcements that helps, but, as resources written by professionals, parents, and, most importantly, autistic people who have been through the process will make clear, ABA truly is more like obedience school for humans which aims to "cure" the "symptoms" of autism and make autistic people appear "normal,” which is not what autistic people want. In general, autistic people are proud of who they are and do not want to change; rather, they want acceptance from the world around them. If this weren't bad enough, 63.5% of Autism Speaks' funds—almost 73 million dollars, more than all other costs combined—goes into their awareness program, mainly in the form of advertising (which, incidentally, receives nearly 47 million dollars, more than double the money of the entire research program), and this is arguably far more dangerous than the research because of the messages these awareness campaigns convey. Their "I am Autism" campaign in 2009 compared autism to terminal diseases and claimed that autism will ruin marriages, families, and, "most importantly," the autistic people themselves. The idea of autism's being a ruiner of lives, a demon which must be destroyed, helps nobody except those profiting off of those messages. Even the families, for whom Autism Speaks claims to care so much (despite the fact that only 4% of their money goes directly to families) are hurt by these messages, for they seek to turn human beings in their homes into monsters. And yet, despite this flushing of money down the pseudo-science drain, despite their spreading of this chilling message about what autism "is" and "does," Autism Speaks still receives millions of dollars every year, has multiple big-name corporate sponsors, holds charity walks all over the country, and, every April, draws attention to itself with its "Light It Up Blue" campaign, where, to quote them, "thousands of iconic landmarks, skyscrapers, schools, businesses and homes across the globe unite by shining bright blue lights in honor of the millions of individuals and families affected by autism. Individuals everywhere wear blue in honor of our community," and this is the campaign Lin-Manuel Miranda and Christopher Jackson were supporting. Mr. Miranda and Mr. Jackson, I know you mean well. I know you want to help autistic people. But, as an autistic person myself, I can tell you that, with an agenda of marketing fear and funding a lost cause overseen by a board with only two autistic people and a history of autistic people resigning from said board because they felt ignored, Autism Speaks does not speak for me. It does not speak for my fourteen year old best friend, whom you made cry with your support. It does not speak for my friend’s autistic classmate who is humiliated by his teachers for being himself. Rather, Autism Speaks has silenced autistic voices time and time again, and I urge you to redirect your energy, your effort, and your money to an organization which does not, such as the Autistic Self-Advocacy Network or ASAN, a group which is led only by autistic people under the motto “Nothing About Us, Without Us.” We want your support, Mr. Miranda and Mr. Jackson. Your work has made you an inspiration and I owe you personally in ways I can’t begin to explain. Your support of Autism Speaks has not caused me to lose faith; rather, it gives me a reason to do what Hamilton himself would do—write; educate; tell the world and tell you what we need. As for the rest of you here on Change.org, I ask that you join me in telling these two great people that they can be greater, by signing this petition and sharing it on social media with #Ham4AMs (AMs being Autistic Mothertruckers, which is what we are.) Join me in promoting autism acceptance. Thanks and best wishes, Ofelia Cohen-Odiaga

Petition Closed
Share this petition
Petition created on May 30, 2016