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Episode 22 - Be Kind Don't Rewind SCRIPT Hello, and welcome once again to Neurologic. I'm your host Leo Jones. Yesterday, on February 11th, Autism Speaks - defined as an autism charity organization - launched their re-introduction, 15-year anniversary celebration and “Year of Kindness” campaign, which includes a new logo, ‘profile stories’ of selected autistics, links to revisions in the organization, a ‘for the record’ page, and of course, information regarding their “Year of Kindness”. Is this the change we've been fighting for? Is Autism Speaks finally, after all these years, listening and [radically] changing? Will the wounds they inflicted be properly treated with recompense, atonement, and apology? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ For those of you who may be unaware, or have a very limited grasp of the history of Autism Speaks, allow me to give you a cursory understanding of why this organization has been repeatedly criticized, scrutinized, denounced and condemned by autistics and autistic-led communities. Content warning: the following language and descriptions may be traumatic for some, and may contain descriptions of violence, abuse and other disturbing actions or events. A lot of the following is from In The Loop About Neurodiversity, as well as several other sources which are cited in the PDF copy of the script for this episode. (https://intheloopaboutneurodiversity.wordpress.com/2019/09/13/the-ableist-history-of-autism-speaks/) [Italic paragraphs adapted From In The Loop About Neurodiversity] Autism Speaks was founded in 2005 by Bob Wright and his wife, Suzanne Wright, grandparents of an autistic child named Christian. Bob Wright was the vice chairman of General Electric as well as CEO and chairman of NBC Universal from 2001 to 2007. As affluent as Bob and Suzanne were, after their grandchild was diagnosed with autism, they expected to get the best autism “treatment” for their autistic grandchild to “cure” him of his autism. After finding out that there is no cure for autism, they founded Autism Speaks out of their desire to find a cure and end what they believed to be an “epidemic” of autism. Suzanne said that she was “losing Christian,” as if autism was taking her grandson away from her. Soon after forming, Autism Speaks received an investment of $25 million dollars from American billionaire Bernard Marcus, who was also the co-founder of Home Depot and was active on the Autism Speaks board of directors. The company continues to be one of the largest fundraisers for Autism Speaks. That same year, Autism Speaks merged with the Autism Coalition for Research and Education, the National Alliance for Autism Research in early 2006, and Cure Autism Now in 2007. All three of these organizations at that time supported research into causes, treatment, and cures or prevention of autism. There's a lot of information regarding the bankrolling of such research and its connection to eugenics that I encourage you to explore at your own leisure - we still have significant ground to cover. World Autism Awareness Day, April 2nd, was not invented by Autism Speaks, but by the United Nations General Assembly. It was adopted on December 18th, 2007, and was passed and adopted without a vote in the UN General Assembly. The first World Autism Awareness Day took place on April 2nd, 2008. What Autism Speaks did invent, however, was the “Light it Up Blue” campaign starting in April of 2010. This is why many people associate Autism Speaks with April 2nd, as they observe World Autism Awareness Day and urge people to “light it up blue” for autism, or wear the color blue, wear blue puzzle pieces, and turn on blue lights for “autism awareness” during April. Blue lightbulbs can even be bought at Home Depot, one of Autism Speaks largest sponsors, during the month of April. Doesn't seem like a big deal, right? I mean, it's just the color blue - and they're trying to spread awareness! What could be wrong with that? Well, let's start with the color. Blue. For what feels like centuries, the sex of a newborn was indicated in the monochromatic color that they were dressed in - blue for male, pink for female. With historical assumptions of autism factored in, lighting it up blue further perpetuated the myth that autism was found only in boys, causing a ripple effect for autistic girls and women who faced not only an uphill battle in getting a diagnosis, but also being taken seriously by a society that ignorantly kept them in the dark. In response to the “Light it Up Blue” campaign, and because World Autism Awareness Day was made with no input from autistic people, autistic people have repurposed “Autism Awareness Day/Month” to, “Autism Acceptance Month,” and use April as a month to celebrate the autistic community. Other autistic pride holidays that have been created by the autistic community include June 18th, or Autistic Pride Day, August 8th, or Autistic Dignity Day, and November 1st, or Autistics Speaking Day. The autistic community also created alternative initiatives to #LightItUpBlue, such as #REDInstead, #ToneItDownTaupe, and going gold for autism acceptance. Red, gold, and crimson, or the combination of red and gold, are colors commonly used by the autistic community during April to show autism acceptance. The rainbow infinity loop for neurodiversity is also used as an alternative for the ableist puzzle piece symbol that Autism Speaks uses and other ableist organizations have used before it. Autism awareness is passive, and many people are already aware about autism, but not nearly as many people are accepting of autistic people and their needs. So you may be wondering, if autistic people have pushed for different colors and different days, why aren't things changing? Why are autistics not leading this conversation? To put it simply, money talks. Autism Speaks has huge corporate sponsors who donate anywhere from $100,000 to over $1 million dollars to Autism Speaks per year. Home Depot, Hersha Hospitality Management (HHM), Modell’s Sporting Goods, Nest Fragrances, Cherry Hill Programs, Charitable Auto Resources (CARS), and Wilson Sporting Goods have contributed anywhere from $100,000 to almost $500,000 per year to Autism Speaks. White Castle, Suntrust Foundation, and Quadrant Bioscience donate over $500,000 annually to Autism Speaks. The largest contributors of Autism Speaks includes GameStop and Dollar General, who donated over a million dollars to Autism Speaks annually. The college women’s fraternity, Alpha Xi Delta, also contributes over $1 million per year to Autism Speaks. Other sponsors of Autism Speaks include Samsung, Great Wolf Lodge, Sesame Street Workshop, and most recently, Kellogg’s and Lids Hats have partnered with Autism Speaks. Not that most of that money goes towards what they claim it does: In 2012, only 3% of Autism Speaks’ budget went to family services, while 36% went to salaries, benefits, and payroll taxes. 25% went to science grants and awards, 5% went to travel, lodging, meals, catering, and entertainment, and 4% went to advertisements and marketing. Yes, more money went to entertainment and marketing than to actually helping autistic people and their families. And that hasn’t changed much today, and in fact, even less of Autism Speaks’ budget goes to family services (less than 2%). Who cares, you might be asking. Lots of charities have high expenditures - that's how you bring in the big money, right? What matters is that they're helping these families and these people with autism. As long as it's for the greater good, it shouldn't matter what the charity does with the money. History, however, cares - and shows us the harm that was done with just a fraction of their budget: Autism Speaks is responsible for films and PSAs (which are no longer available on its YouTube channel) that depict autistic people as aggressive, as monsters, as soulless, and as empty, hollow shells. It created the film, “Autism Every Day,” in 2006, which featured Autism Speaks board member, Alison Singer, discussing the fact that she contemplated driving her car off a bridge with her autistic daughter, Jodie - and that the only reason she did not do this was because of her neurotypical daughter at home. The interview was conducted in front of Jodie without regard that she was right there and could hear everything her mother said about her. This film drew heavy criticism from the autistic community and from the Autistic Self Advocacy Network. Alison Singer later resigned from Autism Speaks in 2009 and went on to found the Autism Science Foundation. Autism Speaks took this film very seriously, unlike the criticism they faced from the autistic community - to the point where they pursued litigation against an autistic that created a parody website in protest: In 2008, a fourteen-year-old autistic teenager and member of the Aspies for Freedom forum going by the nickname, Kelly, made a website called “NT Speaks” (Neurotypicals Speak), which was a satirical parody of Autism Speaks that suggested interventions for neurotypical behaviors the same way Autism Speaks suggests interventions for autistic behaviors. Despite the fact that parody is not a copyright violation and is protected under the First Amendment as free speech, Autism Speaks’ lawyers sent Kelly a letter threatening to sue her for $90,000 for “funds lost” in fundraising efforts for traffic going to her website instead of Autism Speaks. They dropped the suit when finding out about Kelly’s age, but still demanded Kelly destroy the source code of her website and hand over the domain name of her site to Autism Speaks. A year later, the organization created another video - perhaps to recover those ‘lost funds’ from Kelly's NT Speaks website: In its most controversial PSA titled, “I am Autism,” released in 2009, autism is characterized as a demon or a monster.
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