If you live near the United States or Canada, there is a good chance you have heard of Autism Speaks (especially near April, during their “Light it Up Blue” campaign). Maybe there’s an “Autism Walk” near your area hosted by Autism Speaks. Maybe your local grocery store is raising money for Autism Speaks as a “good cause.” Maybe you have heard one of their many PSAs about autism, urging early screenings and talking about the “increasing prevalence of autism.” Or maybe you have heard a celebrity talking about contributing to Autism Speaks. 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.
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. Its logo uses the ableist puzzle piece for autism, a symbol that has promoted ableism since the 1960’s. Suzanne created the Autism Speaks logo as the blue puzzle piece as it was intended to “reflect how adrift and disconnected autism patients and their families could feel.” Suzanne calls autistic people “patients” as if they suffered from an illness or a disease. Autism Speaks continues to spread misinformation and fear mongering, pathologizing language about autism. And it continues to exclude autistic people from its leadership and decisions concerning autistic people.
Autism Speaks was founded in 2005 by Bob Wright and his late wife, Suzanne Wright, grandparents of an autistic child, Christian. 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. 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 there is no cure for autism, they founded Autism Speaks out of their desire to find a cure for him 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. 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. The company continues to be one of the largest fundraisers for Autism Speaks.
- Merging with organizations that promote cures and eugenics
Autism Speaks merged with the Autism Coalition for Research and Education in 2005, the National Alliance for Autism Research in early 2006, and Cure Autism Now in 2007. All three of these organizations support research into causes, treatment, and cures/prevention of autism. Autism Speaks funds the Autism Genetic Resource Exchange, which was established by Cure Autism Now and is a DNA repository available to autism researchers. 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. The National Alliance for Autism Research has given more than $20 million dollars to over 200 autism research and eugenics projects, and Cure Autism Now has given $39 million dollars for autism research grants focused on treating and curing autism. The flagship programs of Cure Autism Now included the AGRE, Autism Treatment Network, Clinical Trials Network, and Innovative Technology for Autism. 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.
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.
In June 2014, Autism Speaks and Google teamed up for their MISSNG project, formerly their Ten Thousand Genomes Program (AUT10), which allowed information to be open source to learn more about the “missing” information about autism. It aims to collect and study the DNA of 10,000 “families affected by autism,” and to create the world’s largest database of sequenced genomic information of autism run on Google’s cloud-based genome database, Google Genomics. 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.
- “Light it Up Blue” campaign
While 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.
This campaign seems harmless enough, however, Autism Speaks raises the most money during April, or “autism awareness month,” as many businesses, from large corporations to small businesses, choose Autism Speaks as the organization to raise money for. 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. April has ever since become a tough month for the autistic community in which they have to fight misconceptions about autism, urge others to stop raising money for Autism Speaks, and have to constantly hear about an organization that has treated them poorly and is claiming to represent them.
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.
- HUGE corporate partners
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.
- Misuse of funds
One of Autism Speaks’ first fundraising events was in 2005 for Hurricane Katrina called “AutismCares” (not to be confused with Autism Speaks’ involvement in the Autism CARES Act, which I will discuss later). AutismCares was a project that Autism Speaks asked people to donate to for families with an autistic child who lost their homes to Hurricane Katrina. Well, little of that money actually went to hurricane victims at all, but to executives, administration, and PR.
In 2007, three members of Autism Speaks’ Board of Directors received $2.5 million for their own organizations unrelated to Autism Speaks. The president of Autism Speaks, Mark Roithmayr, received a five year contract for $2 million dollars, and had no background or knowledge about autism. There was a private airplane expense for $57,000 for someone who entertained at an Autism Speaks event.
Of the $69 million that Autism Speaks made in 2008, over $600,000 was paid towards a single executive, Geri Dawson, who received $669,751 in 2008 including nearly nearly $300,000 to move her family from Washington to North Carolina. Over a quarter of funds for 2008 was used on employee compensation.
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%).
Autism Speaks continues to raise funds from its Autism Walks, which it started from 2006. The first series of Autism Walks raised over $2 million dollars, and continue to provide money for Autism Speaks, although the number of participants has declined in recent years. Autistic advocates often show up at Autism Walks to protest, sometimes with chapters of autistic led organizations such as the Autistic Self Advocacy Network, Autistics 4 Autistics, or Autistics United Canada, and sometimes on their own or with some friends, to send Autism Speaks a message that they do not represent or speak for them.
- Stigmatizing and horrifying films and PSAs
Autism Speaks is notorious for its Public Service Announcements characterizing autism as demonic, a monster, or a tragedy. Its aggressive ad campaigns started in 2005, when The Today Show aired a week long series of ads highlighting autism research and treatment.
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 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. 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. This film drew heavy criticism from the autistic community and from the Autistic Self Advocacy Network. Alison Singer resigned from Autism Speaks in 2009 and went on to found the Autism Science Foundation. There was also a murder of an autistic three year old by her mother mere days after the video’s release. Rather than the pubic conversation being about how tragic it is that a young toddler was murdered, it was about how “heavy a toll” autism is on parents, and a murderer gained sympathy due to the rhetoric that Autism Speaks spread about how burdened and miserable autistic people are.
Its most controversial PSA titled, “I am Autism,” released in 2009, characterizes autism as a demon or a monster. 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. 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. In reality, it clouded autism in darkness, using a deep, scary voice to say the following about autism: “I am autism. I’m visible in your children. But if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering, “Who will take care of my child after I die?” And the truth is, I’m still winning. And you’re scared. And you should be. I am autism. You ignored me. That was a mistake.” A full transcript of the PSA is provided here by the Autistic Self Advocacy Network.
After Autism Speaks released its “I Am Autism” PSA in 2009, the Autistic Self Advocacy Network held protests across the U.S., in Columbus, Boston, New York City, Washington, D.C., and Portland, Oregon that received widespread local press coverage. Additionally, over 60 national and regional disability organizations – including the Arc of the United States, TASH, the Bazelon Center for Mental Health Law and the National Council on Independent Living – signed a joint letter urging donors to rescind their support for the organization.
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.
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. Screenshots of the original post have been retrieved here, and there is an analysis/rebuttal of the apology here by autistic activist, Amanda Seigler. 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.
Autism Speaks continues to characterize autism as undesirable and something that should be eradicated and cured. A 2019 issue of Diversibility Magazine has a PSA by Autism Speaks pathologizing lack of eye contact to promote early screenings of autism. It has pictures of autistic people not looking straight at the camera with the caption, “One time is a bad photo. Many times is a sign.” This Autism Speaks ad in the magazine is right next to an article of the value of hiring autistic people, and ads like this serve to further stigmatize autistic people and make it harder for us to be employed.
Autism Speaks offers a “100 Day Kit” (for a price after six months of diagnosis) as a resource for families of a child recently diagnosed with autism. 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. This kit is part of Autism Speaks’ early screening initiative that is promoted through PSAs involving Ad Council and the muppet, Julia from Sesame Street.
- Threatening to sue an autistic teenager
In 2008, a fourteen-year-old autistic teenager who was a member of the Aspies for Freedom forum and went by the nickname, Kelly online made a website called “NT Speaks” (or 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. Parody is not a copyright violation and is protected under the First Amendment as free speech, but Autism Speaks’ lawyers decided they were above the law and sent Kelly a letter threatening to sue her for $90,000 for the “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 to destroy the source code of her website and give the domain name of her site to Autism Speaks.
- Autism Speaks chapters and influence on college campuses
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. 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.
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.
Autism Speaks chapters and other fraternities and sororities continue to spread ableist rhetoric about autistic people, such as the “Autism: Putting the Pieces Together” event by the Georgetown University Omicron Pi Chapter of Alpha Kappa Alpha in April, 2013 that had no representation of autistic people, but did have an Autism Speaks representative. The flyer for the event had bullet points such as, “Autism is the fastest growing developmental disability in the US,” and, “There is no medical detection or cure for autism,” and has jigsaw puzzle pieces in the background. Autism Speaks takes the representation that should be representation of autistic people and voices. They speak over autistic people and take our space and spread ableist rhetoric about the need for a cure or treatment for autism.
- Rescinding job offer for a mother, failing to accommodate her autistic child
Simone Greggs, a mother with an autistic son, filed a lawsuit against Autism Speaks in 2012 after they rescinded her job offer. She applied for an Autism Walk events manager position, of which the salary was $50,000 per year. 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. Simone Greggs also turned down another job offer from the Democratic National Committee because she was expecting to work for Autism Speaks. She then got a phone call that Autism Speaks rescinded the job offer. Greggs filed a lawsuit against Autism Speaks for discrimination, but the lawsuit was dismissed in court.
- Ableism and bullying towards autistic people
In around 2013-14, an autistic advocate, when first diagnosed with autism, was referred to Autism Speaks by the neurologist who diagnosed her. 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! We do not need any more people with autism. What is wrong with you?” To tell an autistic person that they should not have any more children because they are autistic is incredibly ableist, rude, and uncalled for.
Autism Speaks additionally has many celebrity supporters. Some celebrities do not know the ableist history of Autism Speaks and continue to support them. Others do know, but continue to support them anyway, and even bully autistic people who oppose Autism Speaks. Among such celebrities is William Shatner, (yes, “Captain Kirk” on Star Trek), who bullies and blocks autistic people on Twitter for educating him on why Autism Speaks is a harmful organization. Shatner additionally sends his Twitter followers to attack autistic people online. 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 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. 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.
- Lobbying for abusive ABA therapy
Autism Speaks has spent millions of dollars lobbying for Applied Behavioral Analysis to be covered by insurance companies in the United States. ABA is a strict compliance therapy that encourages social masking while discouraging stimming and echolalia that uses abusive techniques such as planned ignoring to ignore autistic children’s communication, and uses rewards and punishments as incentives to achieve desired behaviors and stop undesired behaviors. It aims to make autistic people appear to be “less autistic,” and is akin to how gay conversion therapy aims to “take/pray the gay away.” There is recent research linking Applied Behavioral Analysis to PTSD in autistic adults, and more parents are recognizing the harm of ABA and are doing alternative early interventions, such as occupational therapy and speech language pathology based on their autistic child’s individual needs.
- Partnering with controversial, abusive organizations
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. 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. Yes, that’s right, Autism Speaks featured an institution that abuses disabled people as a “service provider” at one of their Autism Walks. 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.
In 2017, Autism Speaks faced controversy when a white supremacist group called, Soldiers of Odin registered for one of their Autism Walks in Ontario, Canada, and Autism Speaks partnered with the group. Soldiers of Odin has white supremacist roots with a Finnish Aryan group and has harassed refugees. When confronted about it, Autism Speaks claimed they were, “Looking into it,” but no mention was made as if Soldiers of Odin were still involved in that Autism Walk, although the organization is no longer mentioned on Autism Speaks’ website.
- Spreading myths and misconceptions about autism
Autism Speaks continues to spread misconceptions about autism to this day in its 100 Day Kit and PSAs. One myth that it spreads is that autism is “on the rise,” or that the prevalence of autism is increasing. More people are not suddenly “becoming” autistic, but more autistic people are receiving diagnoses. If anything, autism is underdiagnosed, especially among minorities such as autistic women and nonbinary people. Another myth that it spreads is that autism is “four times more common in boys than girls.” Boys are not four times more likely to become autistic, nor do they have an “extreme male brain” that makes them more susceptible to autism, but boys are more likely to receive a diagnosis for autism than autistic girls, women, and nonbinary people who do not present autism the same way as boys, and are more likely to stim and play differently as well as hide or camouflage their autistic behaviors. 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.
- Using children’s cartoon characters to promote themselves
Autism Speaks has also used children’s characters, such as using the Nick Jr. character, Wubzy from, Wow, Wow, Wubzy! 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. 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.
- Minimal autistic involvement and representation
Autism Speaks has had very little autistic people involved in its organization throughout its history. 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. In 2013, he resigned after Suzanne Wright released an op-ed calling for the United States to act on the “autism epidemic.” and said in his blog that, “My words and efforts have had no real impact on the beliefs of the actual leadership of the organization.”
It wasn’t until 2015, ten years after the organization was founded, that Stephen Shore and Valerie Paradiz, two openly autistic people, were added to their board of directors, putting autistic people in positions of power for the very first time in the organization’s history. Bob Wright and Liz Feld also stepped down from their respective positions of board chair and president of Autism Speaks in 2015. Their current (neurotypical) president, Angela Geiger, was appointed in 2016. In ten years of the organization’s history, only three autistic people had been involved with any leadership positions in Autism Speaks.
- Supporting cure and treatment research for autism
Since its introduction and passage in 2006, Autism Speaks heavily lobbied for and supported the Combating Autism Act. This is the only legislation in the United States focused on autism, and more specifically on “combating” autism, or “curing” autism. The largest sources of funding for the Combating Autism Act are the National Institutes of Health (NIH) and the CDC, which both funded research investigating potential causes and treatments for autism. The Autistic Self Advocacy Network successfully advocated to change the name of the legislation to the Autism CARES Act in 2014. However, the funding priorities of curing and “combating” autism have not changed much since 2006.
Autism Speaks additionally lobbied against provisions to expand autistic representation in autism research. A proposed amendment to the Autism CARES Act in 2014 introduced by Rep. Jan Schakowsky (D-IL) would have included provisions expanding self-advocate representation in autism research, re-balanced autism research to support investments in transitional services and issues that affect autistic adults, but it did not receive a vote in Congress and was withdrawn after its introduction, as Autism Speaks and its allies lobbied against these provisions in favor of funding for cure and treatment research. The Autism CARES Act is up for renewal by September of 2019 and has been passed by the House of Representatives.
- Releasing a call to action for the US Government to address the “autism crisis”
On November 11, 2013, Suzanne Wright released a call to action to the United States government titled, “Autism Speaks to Washington – A Call for Action,” asking America to “wake up to the autism crisis,” and “demand a national response” to autism. Text from the letter included, “This is the week America will fully wake up to the autism crisis. If three million children in America one day went missing – what would we as a country do? If three million children in America one morning fell gravely ill – what would we as a country do? We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made. We’d leave no stone unturned. Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.”
This letter angered the autistic community including the Autistic Self Advocacy Network, who condemned the letter and their policy summit. 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. 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. Suzanne Wright’s call to action letter has since been removed from Autism Speaks’ website, but has been archived here.
- Supporting antivaccine research
While Autism Speaks now says on its website that vaccines do not cause autism, for years it supported research attempting to link vaccines to autism, even after research came out debunking this link.
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. 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.
The statement on their website used to read, “Several epidemiological studies have explored whether either the MMR vaccine or thimerosal, a preservative previously used in vaccines, are linked to autism, and these studies have not supported a link. But these studies were not designed to identify effects in a small population of potentially vulnerable children due to rare genetic and/or medical conditions.” Autism Speaks left the possibility open that vaccines could cause autism or influence autistic behaviors.
Autism Speaks’ Strategic Plan for Science that outlined the organization’s priorities from 2013 through 2017 mentioned funding studies linking autism to “adverse responses” from vaccines: “Autism Speaks is funding studies on the underlying biology of autism, including studies to better understand medical and genetic conditions that are associated with autism that could potentially be linked to adverse responses to immunization.” It was not until 2015 when Autism Speaks revised its position on vaccines, with the present statement on their website being, ““Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism. We urge that all children be fully vaccinated.”
- Disrespecting language preferences of the autistic community
In July 2019, Autism Speaks made a poll asking, “Do you prefer person-first language or identity first language? Choose which you prefer then tell us hwy as well as your connection to autism in the comments. Thanks!” Of course, within the first few hours of the poll, person first language, or “I have autism,” was the leading result due to most of Autism Speaks’ followers being neurotypical, including parents, caregivers, teachers and professionals who responded to the poll. Autism Speaks knew this, and attempted to use these poll results to falsely claim that the autistic community preferred person first language. When autistic people heard about the poll, they responded in waves on Facebook and Twitter, and the final poll result on Facebook was 69% for identity first language, or, “I am autistic,” and 31% for person first language, or, “I have autism.” The results on Twitter were 82% for identity first language, and 18% for person first language. When looking at the poll, mostly neurotypical people voted for person first language, while mostly autistic people responded for identity first language. The autistic community had spoken. However, Autism Speaks continues to use person first language when speaking about autistic people, in spite of poll results and the overwhelming preference in the autistic community for identity first language, pretending that the poll never even happened since the results did not go the way they wanted.
This may seem more minor compared to other things Autism Speaks has done, however, language preference is important in the autistic community. Putting identity first means embracing autistic identity rather than separating autism from people. 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. Unless otherwise asked by an autistic person, I put identity first and so do the majority of organizations run by autistic people themselves, such as the Autistic Self Advocacy Network and Autistics United Canada.
- Creating stigma about mental health disabilities
Following tragic mass shootings in America, Bob Wright, the co-founder of Autism Speaks, has recently made a proposal to the Trump Administration to monitor people with mental health disabilities for signs of aggression to predict violence. The proposal, coined SAFEHOME (Stopping Aberrant Fatal Events by Helping Overcome Mental Extremes) includes utilizing technology such as phones and smart watches to determine if people with mental health disabilities are at risk of committing a violent crime. 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.
- Has Autism Speaks changed at all? Can they change?
Autism Speaks claims it is no longer seeking a cure, and the word, “cure” was removed from its mission statement in 2016. However, when one reads its “100 Day Kit,” when one sees Autism Speaks’ support of Applied Behavioral Analysis and cure and treatment research via the Autism CARES Act, when one watches a PSA created by Autism Speaks, it is evident that they still prioritize fixing or curing autism. Their updated mission statement is, “Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions. Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.”
Again, causes and interventions is prioritized over supporting the needs of autistic people. The word, “solutions,” is the likely substitute for “cures.” And the fact that they still disrespect the language preference of the autistic community by saying, “people with autism spectrum disorder,” rather than, “autistic people,” is just one example of how they do not promote autism acceptance or respect for autistic people. Autism Speaks hasn’t changed a bit since 2005, except for having significantly more money, power, and influence.
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? 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. Some simple aesthetic things Autism Speaks could do is change its puzzle piece symbol to a more positive symbol, such as the symbol for neurodiversity. Or even just remove the puzzle piece symbol and replace it with almost anything else. 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. 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.
Actions that would take a lot more work for Autism Speaks to become an autism and neurodiversity positive group would be to transform its leadership and include many autistic people. It would have to reprioritize its funding to services for autistic people, which as of now receives less than 2% of the budget, and support research for social needs of the autistic community rather than towards cure and treatment research as it continues to do. It would have to change its literature and advertisements, including the 100 Day Kit and remove its pathologizing language and remove the myths it has spread, such as the myth that autism is “on the rise” and “more common in boys.” It would have to denounce Applied Behavioral Analysis and related harmful early interventions for autism and recommend alternatives such as occupational therapy, music therapy, and speech language pathology among others. And possibly the least likely thing they will ever do, is they will have to issue a public apology to the autistic community for all of the harm it has caused by its PSAs, its funding priorities, by lobbying for anti-autistic practices and legislation, and pledge to be better and learn from autistic people to unlearn ableism. But because even one of these changes is unlikely to happen, it would be better to support existing autistic advocacy organizations such as the Autistic Self Advocacy Network , the Autistic Women’s and Nonbinary Network, Autistics United Canada, and Autism Inclusive Meets.
Autism Speaks is not the only harmful or ableist organization that claims to be an “autism charity.” But it is among the most influential, and continues to silence autistic people to this day. Huge companies and influential celebrities continue to pour money into Autism Speaks, either ignorant of the harm it has caused to the autistic community, or not caring about such harm. More companies, such as Sesame Street, Kellogg’s, and Lids Hats partnered with Autism Speaks this year alone. Few companies, such as Voodoo Doughnut and Build a Bear, actually listened to and respected the autistic community after educating them on why its a harmful organization. After outcry from the autistic community, whether it was purely a business decision or whether they really did want to respect autistic people, they listened and we are thankful they did so. Many companies believe supporting Autism Speaks is good for business despite its controversy, and ignore the autistic community. As an autistic person, I oppose Autism Speaks and related ableist organizations. I refuse to allow its pathologizing language to dictate my self worth. And I will try my hardest to persuade people and organizations that support Autism Speaks to think otherwise and listen to the autistic community.