Based on research of Autism Speaks’ materials, a common thread that the organization seems to focus on most is the high-support needs autistics. Autism speaks came on board long after the film was finished, four years in fact. Her autistic son attended a school in which he received individual support, and Greggs asked her new boss if she could get off early on Wednesdays so she could pick up her son from school, and her request was initially accepted. But if I can help it, I am invisible to you until it’s too late. Suzanne Wright’s call to action letter has since been removed from Autism Speaks’ website, but has been archived here. "Those ideas are insane!" Autism is a way of being. If you remove the autism, you have nothing left. "Autism Speaks's idea of representing Autistic people is absolutely crazy." In fact, it’s so simple, I can’t believe it needed a post. I speak your language fluently, and with every voice I take away, I acquire yet another language. Because its history is so tainted already, it would have to take monumental strides to transform its leadership and its mission and goals to those helping autistic people rather than seeking to treat them or get rid of autism. It is widely assumed that person first language is “more polite” to put the “able before the label,” but many disability communities, including the blind, deaf, and autistic communities, disagree and believe that disabilities are identities to be proud of and something that cannot and should not be separated from people. He is also the brother of Christian, who was the one that inspired the Wrights to found Autism Speaks after he was diagnosed as autistic (technically labelled under PDD-NOS, as stated by Bob Wright). In 2007, three members of Autism Speaks’ Board of Directors received $2.5 million for their own organizations unrelated to Autism Speaks. the funding priorities of curing and “combating” autism have not changed much since 2006. Many autistic people oppose Autism Speaks, as it has an extensive ableist history, and continues to perpetrate ableism today through its 100 Day Kit and stigmatizing PSAs about autism. It’s honestly that simple. Among Autism Speaks’ largest donors is one women’s fraternity at Knox College, in Galesburg, Illinois called, Alpha Xi Delta that has partnered with Autism Speaks in 2009 and raises over $1,000,000 a year for Autism Speaks, contributing over $10 million total and nearly $2 million last year alone. Autism Speaks is also involved with the Autism Genome Project, in which part of its mission is to develop prenatal screenings for autism, which would likely result in babies who had a higher chance of being autistic to be aborted, contributing to eugenics, or the science of improving a human population by controlled breeding to increase the occurrence of desirable heritable characteristics. But then the video takes a sudden left turn when Mattias says, “it’s hard for him to talk, and when it does, it’s just… not right.” Christian has high-support needs and is nonspeaking, but just because he can’t speak in the way neurotypicals may expect does not inherently make his method of communication “not right.” There is no true correct way to communicate, as iPads and facilitated communication has opened amazing opportunities for nonspeaking autistics for years. In 2013 during an Autism Walk in Washington, D.C., Autism Speaks chose to host and feature the Judge Rotenberg Center as an exhibitor and promoted it as a resource and service provider for autistic people and their families. Many of those people have medical conditions such as seizures and gastrointestinal issues, which should undoubtedly be treated. That raises the question: what’s wrong with not working and having to be cared for? Of course, integrating autistic people into the community and teaching young children in school to embrace autistic people would be a great start, as opposed to fearing them. This is the same organization where their former executive vice president talked about the thought of murdering her own child while they were in the same room. “Autism isn't something a person has, or a "shell" that a person is trapped inside. If you wouldn’t do something to an able-bodied child, do not do it to your disabled children. The autistic community also created alternative initiatives to #LightItUpBlue, such as #REDInstead, #ToneItDownTaupe, and going gold for autism acceptance. Autism Speaks additionally lobbied against provisions to expand autistic representation in autism research. Autism speaks I’m visible in your children. I don’t sleep, so I make sure you don’t either. Maybe there’s an “Autism Walk” near your area hosted by Autism Speaks. After that, he then talks about how Christian cries in his bedroom, where Mattias states that, “it’s one of the times that it’s hard to have a brother with autism.” While it can be difficult to live with a high-support needs family member if the correct resources are not available or provided to the family, Christian’s nights of crying are private and not something any child would want their relatives talking about; it’s even more exploitative for the person in question when said private moments are included in an animated video produced for a mass audience. Ableist Language Ableism can be understood as use of language that may be disparaging to people with disabilities, even if used to refer to something unrelated. Your scientists don’t have the resources and I relish their desperation. Its goals and rhetoric have resulted in protests, led by autistic people, and many of their loved ones and allies. The results of this research are clear: Vaccines do not cause autism. Autism Speaks knew this, and attempted to use these poll results to falsely claim that the autistic community preferred person first language. And if companies do formulate such a system, the unproductivity that Bob Wright fears will be remedied, and autistic people would be paid, so everyone would benefit in some way in the end. Instead, say “The world has become disconnected”. This may seem more minor compared to other things Autism Speaks has done, however, language preference is important in the autistic community. Not only would that help the company by showing that they are inclusive to hire autistic people, but it could also integrate autistic people in the community and teach customers how to better understand them by putting them together in the same environment. Thank you for writing this. That’s extremely ableist. Despite how grim Suzanne Wright’s words were in that interview alone, her husband and the other co-founder, Bob, had his own equally harmful focus on the matter. I derive great pleasure out of your loneliness. She then got a phone call that Autism Speaks rescinded the job offer. More companies, such as Sesame Street, Kellogg’s, and Lids Hats partnered with Autism Speaks this year alone. I had a brother with severe autism and brain did not have the capacity to function independently. This action by Sesame Street to partner exclusively with Autism Speaks and Ad Council to create these PSAs led the Autistic Self Advocacy Network to end its partnership with Sesame Street. A 2019 issue of Diversibility Magazine has a PSA by Autism Speaks pathologizing lack of eye contact to promote early screenings of autism. Even John Elder Robinson, the only openly autistic person involved with Autism Speaks at that point, resigned from the organization in response to the call to action. A few corrections: It’s “Asperger’s Syndrome.” Either way, it’s not important, since there’s no longer a diagnostic difference between Asperger’s and the broader classification of ASD. Fuck this entire thing. Bob Wright is extremely wealthy, and is the vice chairman of General Electric and was the CEO and chairman of NBC Universal from 2001 to 2007. Or even just remove the puzzle piece symbol and replace it with almost anything else. Autism Speaks U launched in 2008, and they raise millions of dollars for both Autism Speaks U events and for collegiate teams at their Autism Speaks Walks. Simone Greggs also turned down another job offer from the Democratic National Committee because she was expecting to work for Autism Speaks. PSAs involving Ad Council and the muppet, Julia from Sesame Street. I generally like them, and they seem to generally like me, some in … The thing is, when you talk about preventing autism, that includes the low-support needs autistics too. The college women’s fraternity, Alpha Xi Delta, also contributes over $1 million per year to Autism Speaks. Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.”. All the organization wants is to kill autistic people. It has pictures of autistic people not looking straight at the camera with the caption, “One time is a bad photo. April is the month when a world that already characterizes autistic people as dangerous, incapable children musters all of its remaining ableist spirit to raise awareness of the perceived horrors of the disease. However, the funding priorities of curing and “combating” autism have not changed much since 2006. While it has the usual sensational elements a promotional video of a charity of similar size and scope would have, it quite subtly takes a sinister turn. sent Kelly a letter threatening to sue her for $90,000. This is Amazing, in fact this part here, this whole paragraph displaying the hatmfullness of Autism speaks is something that I as an Autistic individual connect with because I’ve had someone else say the same about me, “he then talks about how Christian cries in his bedroom, where Mattias states that, “it’s one of the times that it’s hard to have a brother with autism.” While it can be difficult to live with a high-support needs family member if the correct resources are not available or provided to the family, Christian’s nights of crying are private and not something any child would want their relatives talking about”. Right off the bat, Autism Speaks received an investment of $25 million dollars from American billionaire, Bernard Marcus, who was also the co-founder of Home Depot and is still active on the Autism Speaks board of directors. Greggs filed a lawsuit against Autism Speaks for discrimination, but the lawsuit was dismissed in court. They dropped the suit when finding out about Kelly’s age, but still demanded Kelly to destroy the source code of her website and give the domain name of her site to Autism Speaks. Thank you for a well written article. raise millions of dollars for both Autism Speaks U events and for collegiate teams at their Autism Speaks Walks. did not have any openly autistic members in their organization at all until John Elder Robinson joined Autism Speaks as a member on its science and treatment advisory boards in 2009, claiming that he was interested in helping remediate the disabling aspects of autism. "Autism Speaks's idea of representing Autistic people is absolutely crazy." Autism Speaks leadership is not Autistic and they run adds that don’t accurately portrays autism. There's no normal child hidden behind the autism. I work very quickly. as a mascot since 2009, and more recently, using Julia, an autistic muppet from Sesame Street, for its PSAs promoting its ableist 100 Day Kit. However you have heard about Autism Speaks, it’s unlikely you have heard about them from the very people they claim to support: the autistic community. This is the only legislation in the United States focused on autism, and more specifically on “combating” autism, or “curing” autism. Autistic people also do not like the color blue that Autism Speaks has used, due to the false gender stereotype of autism being “more common in boys” that Autism Speaks still promotes in its 100 Day Kit, making it harder for women and others with diverse gender identities including transgender individuals, gender nonconforming people, and nonbinary people to receive an autism diagnosis. Where the autistic rights movement IS the news! 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. Another simple thing Autism Speaks could do is use identity first language, but as seen by its social media accounts, the organization does not intend to do this, either. — autism speaks (@autismspeaks) May 13, 2020 Advertisement Hide Eventually, TikTok users began uploading videos with the same sound criticizing those who are taking part in the challenge. Cassandra wants others to know that being different is not something to be ashamed of, but is something to be proud of. What Autism Speaks did invent, however, was the “Light it Up Blue” campaign starting in April of 2010. In ten years of the organization’s history, only three autistic people had been involved with any leadership positions in Autism Speaks. Autism Speaks partnered with the Judge Rotenberg Center, the only residential care facility in the United States to use electric shock therapy on disabled and neurodiverse residents. Ten years later after the release of the “I am Autism” PSA, Billy Mann released an apology on his Facebook page to the autistic community on February 13th, but recently deleted the post due to backlash from the autistic community for having no intention to change his language, action, and behaviors to reflect he was sorry, as well as defending Autism Speaks for their actions rather than condemning them and owning up to his own and the organization’s faults. Ableism comes in the form of stereotypes, assumptions, and demeaning language. Autism Speaks continues to spread misinformation and fear mongering, pathologizing language about autism. 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. As an autistic person, I oppose Autism Speaks and related ableist organizations. Autism Speaks additionally supports the Clinical Trials Network, and Toddler Treatment Network, which both focus on interventions and treatments of autism on autistic children as young as infants and toddlers. Since the video that this article responds to is an hour long, another section to unpack and discuss are the commercials sandwiched between each interview. Autism Speaks has spent millions of dollars lobbying for Applied Behavioral Analysis to be covered by insurance companies in the United States. 15 Common Phrases That Are Way More Ableist Than You May Realize March 2, 2016 / Caley Farinas When I was in middle school, my family started going to an autism support group. In reality, it clouded autism in darkness, using a deep, scary voice to say the following about autism: “I am autism. Criticisms from the autistic community included the notion that autistic people were “missing,” and that this project would lead to prenatal screenings of autism, or eugenics. The interview was conducted in front of Alison’s autistic daughter, Jodie Singer, without regard that the daughter was right there and could hear everything the mother said about her. We’d leave no stone unturned. Nonprofits such as Popcorn for the People display the eagerness of autistic workers in spades, but until businesses find a system to include autistic people among their employees (being paid a wage where they can live independently, which should apply to all other workers too), the population will suffer. Well, little of that money actually went to hurricane victims at all, but to executives, administration, and PR. Most People Don’t Know They Are Acting Ableist. We do not need any more people with autism. Only people with actual mental illness, like psychopaths or schizophrenics do that kind of thing." He has called autistic people names such as “brainwashed,” “liars,” and saying ableist statements such as, “Does anyone in the ND world have the skill set to research facts?” He has made multiple false claims about the Autistic Self Advocacy Network to justify his support of Autism Speaks such as by calling their flyer “propaganda,” when it was made by autistic researchers who broke down the budget of Autism Speaks, which shows that it spends less than 2% of its earnings on services for autistic people. If anything, autism is underdiagnosed, especially among minorities such as autistic women and nonbinary people. If three million children in America one morning fell gravely ill – what would we as a country do? Thank You Cassie! But as long as William Shatner keeps raising money for Autism Speaks, they don’t care what he says or does to the autistic community. Horrific Autism Speaks “I am Autism” ad transcript Vicious Prejudice Shown in Autism Speaks Video: We have provided the full transcript of the "I am Autism" video by Autism Speaks, which depicts Autistic people as useless burdens destroying their families and society. And I will try my hardest to persuade people and organizations that support Autism Speaks to think otherwise and listen to the autistic community. condemned the letter and their policy summit. The paragraph shows us what those associated with autism speaks are like and how they dehumanize and infantilize Autistics while removing their personhood through the violation of privacy. As someone who is autistic herself, she aspires to teach and learn from other neurodivergent people. I know where you live. 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. While Bob and Suzanne Wright did not necessarily agree with Katie Wright, they did leave the possibility open and funded research linking vaccines to autism. That was a mistake.” A full transcript of the PSA is provided here by the Autistic Self Advocacy Network. Katie Wright, the daughter of Bob and Suzanne Wright, believed vaccines caused her son, Christian’s autism, and became a board member for Safe Minds, which had the slogan, “Resolving the autism epidemic,” and conducted research for “environmental factors” for autism and supposed links of vaccines to autism. The first World Autism Awareness Day took place on April 2nd, 2008. For an organization to suggest that such a group of people should be prevented from existing is simply damning and warrants drastic changes to the society we live in. It created the film, “Autism Every Day,” in 2006, which featured an Autism Speaks board member, Alison Tepper Singer, discussing the fact that she contemplated driving off a bridge with her autistic daughter, Jodie Singer, and that the only reason she did not do this was because of her neurotypical daughter at home. Autism Speaks to Washington – A Call for Action,”. What is wrong with you?”, bullies and blocks autistic people on Twitter. But since Down’s syndrome and autism does not kill the person nor anyone around them, the only reason people would want to have such a test exist is out of ableism and quite possibly eugenics. Autism cannot be separated from a person, as it is the way a person’s brain is wired and forms the basis of their movements, thoughts, feelings, and everything else. Billy Mann is a musician and a board member for Autism Speaks, and his celebrity status and influence in the music industry had convinced numerous celebrities in the music industry, such as P!nk, Dave Grohl, and Paul Simon to support Autism Speaks. In the kit (and keep in mind this was last updated in 2018), it tells families to go through the five stages of grief after their child has been diagnosed with autism, it discourages autism acceptance, and it has a parent testimony wishing that their autistic child was given the same amount of sympathy as another child diagnosed with leukemia. The narrator then states that it aims, “to help researchers find new ways to treat, cure, and potentially prevent brain disorders such as autism.” She says all this without breaking stride while a children’s chorus sings the words “light it up blue” unendingly in the background. In this video, I discuss my personal feelings regarding Autism Speaks and discuss some of the controversies they have faced over the years. It was adopted on December 18th, 2007, and was passed and adopted without a vote in the UN General Assembly. Billy Mann continues to wear the blue puzzle piece with pride, despite the symbol being considered a hate symbol in the autistic community, and continues to work for Autism Speaks today. It’s an alarming example of a video promoting the prevention of an entire group of people from existing while using imagery of people smiling and children cheerily singing. ( Log Out / They don't listen to what autistic people have to say. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. You’ll notice that a majority of them are parts of Big Business and Media, which explains why I call the organization “brand-name autism”: they’re more concerned about their brand image than anything else. Disability rights activists to this day are urging the FDA to #StoptheShock and ban electric shock torture in the United States and to shut down the Judge Rotenberg Center for good. And it continues to exclude autistic people from its leadership and decisions concerning autistic people. When she came up to the Autism Speaks booth, they asked her personal questions such as how many children she had, and then told her that she should stop having children: “YOU SHOULD NOT HAVE BRED! Research has shown that people with mental health disabilities are far more likely to be victims of violent crime than committers of violent acts, yet Bob Wright intends to create stigma and fear monger mental health as his organization did with autism and autistic people. “They do that because they see that the productivity loss here is significant,” Wright said. If Autism Speaks was a true autistic advocacy organization, it would tell William Shatner to stop harassing autistic people online and that they do not want someone who makes ableist comments towards autistic people to represent their organization. Autism Speaks had a three day summit called National Autism Summit in Washington, D.C. from November 12-15, 2013 involving congressional leaders, bipartisan officials, and neurotypical “autism experts” to advocate for more cure and treatment research funding and to raise money for their own organization. Text from the letter included, “This is the week America will fully wake up to the autism crisis. Mattias’ tale is told through animation rather reminiscent of a cross between children’s drawings and an indie rock music video. – In the Loop About Neurodiversity, Let’s all laugh at celebrities that never learn anything tee hee hee – Autistic Rights and Freedoms, ทำความรู้จักกับ Autism Speaks องค์กรที่น่ารังเกียจสำหรับบุคคลออทิสติก – Neurodivergent Thailand, ทำไมแคมเปญ Light It Up Blue และ วันตระหนักรู้ออทิสติกโลก ถึงแป้ก? Billy Mann wrote a poem with dark, dehumanizing language about autism that became the script for “I am Autism.” Billy Mann’s Parents submitted videos of their autistic children for the PSA when the press release for it advertised that it would use the footage to shine a “bright light” on autism. spends less than 2% of its earnings on services for autistic people. In 2014, Autism Speaks released a documentary titled, “Sounding the Alarm: Battling the Autism Epidemic.” In this film, Lori Unumb, who was Autism Speaks Vice President of State Government Affairs, calls autism an “unforeseen and unprovoked medical disaster,” and said there is a “huge autism tsunami that is going to hit the state budgets of all of our states if they don’t ensure that the kids are getting treatment.” Even just a few years ago, Autism Speaks has compared autism to natural disasters and diseases, as well as suggesting that autistic people are a huge financial burden on society. But Autism Speaks does not intend to replace the puzzle piece symbol now, believing it to be a positive symbol, and even has a puzzle piece toolkit for schools to use for activities during April, or Autism “Awareness” Month. With that said, there is a difference between treating things that would harm or kill a person if left untreated and preventing that person from existing entirely. Their ideas are nuts." There was also a murder of an autistic three year old by her mother mere days after the video’s release. MSSNG is a database compiling 10,000 genomes of autistic people and their families that utilizes Google’s cloud software throughout different labs across the world. 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. Many autistic people are quite eager to work, but due to inherent bias and discrimination, they are not afforded those options because of an ableist workforce. Simone Greggs, a mother with an autistic son, filed a lawsuit against Autism Speaks in 2012 after they rescinded her job offer. So, is there a chance that Autism Speaks could hypothetically be an autistic advocacy organization rather than an “autism charity,” or an organization that could actually do good for the autistic community? Suzanne said that she was “losing Christian,” as if autism was taking her grandson away from her. – In the Loop About Neurodiversity, Ableists: Shut Up And Listen! Autism Speaks also promotes quack diets, such as gluten free or casein free diets to “improve autistic behaviors,” although neither affects autistic people in any way. I will be sharing this with my network. It also funds the Autism Tissue Program, which is funded by the National Alliance for Autism Research and manages and distributes brain tissues donated for autism research. Following the “I am Autism” PSA, one Autism Speaks U chapter at Ohio State University posted signs with false fear mongering slogans such as, “80% of parents of children with autism get divorced,” “More children will be diagnosed this year with autism than with diabetes, AIDs, and cancer combined, ” “For every locked mind, there’s a key to find,” and, “Support autism research: disturb the sound of silence.” Signs include quotes from or inspired by the the “I am Autism” PSA including, “Autism knows no race, ethnicity, social boundary, family income, lifestyle, or education level.” Members of the Autistic Self Advocacy Network in Central Ohio protested these fear mongering signs and the stigma of the “I am Autism” PSA. Was founded in 2005, except for having significantly more money went to hurricane victims at,. – in the form of stereotypes, assumptions, and Quadrant Bioscience donate over $ 1 per... That don ’ t sleep, so I make sure you don ’ exist. 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