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, - 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?

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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 , 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 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 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 , 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, “,” 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 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 forum going by the nickname, Kelly, made a website called “NT Speaks” ( 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. 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. He had previously written a poem with dark, dehumanizing language about autism that later became the script for “I am Autism.” Parents submitted videos of their autistic children for the video when its press release advertised that the footage would be used to shine a “bright light” on autism.

In reality, it clouded autism in darkness, using a deep, scary voice to say the following:

“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 can be found through the Autistic Self Advocacy Network website: autisticadvocacy.org]

In response, 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 – signed a joint letter urging donors to rescind their support for the organization.

Despite the protests and reactions, Autism Speaks didn't stop, and did not apologize.

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.” 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, 2019 - but shortly deleted the post due to backlash from the autistic community for having no intention to change his language, actions, and behaviors to reflect that apology, as well as defending Autism Speaks for their actions rather than condemning them and owning up to his own and the organization’s faults. Billy Mann continues to wear the blue puzzle piece, and continues to work for Autism Speaks today.

There are more examples available than just these; again, links will be added to the script for this episode. With that overview, here we are in 2020 - and there has been no official apology, no acknowledgment, no atonement for the damage their actions have caused over the past decade and a half.

However, there's a more colorful puzzle piece logo and lower-case letters for their name - which is incredibly interesting; wonder where they got the multi-color idea from? Couldn't be from autistic-led organizations and their own symbols; we're soulless, empty shells, after all, incapable of producing such things.

Speaking of autistic-led organizations, one of the most crucial critiques of Autism Speaks is the dearth of actual autistic representation on their board of directors and leadership.

At the time of this recording, how many autistics do you think have seats on the Autism Speaks Board of Directors? 3? 4? 7?

....

The answer is: one. Stephen Shore. Out of 31 members. Less than 5% representation.

Let that sink in. The world's largest autism charity has only one autistic board member on its board of directors....and no autistics in positions of leadership.

Would we take the NAACP seriously if there was only one black person on their board of directors, and nothing but white people in positions of leadership? Obviously not, it makes no sense!

Yet Autism Speaks does this, and outside of autistic-led and various disability organizations, there is hardly any outcry.

Autism Speaks 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. 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.

You can find autistics in their videos, speaking to schools, and writing books and blogs for them - but when it comes to leadership and direction, the doors suddenly seem to be locked.

Despite a lack of change in the boardroom, there's been some change in Autism Speaks - especially regarding vaccines. If you're wondering why vaccines have become so demonized and panicked over in the past decade, it's not just due to a fraudulent study.

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 such a link.

Katie Wright, the daughter of Bob and Suzanne Wright, believed vaccines caused her son’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 formerly 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 stating, “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.”

While it's refreshing to see that there is a definitive statement, it's disappointing and quite saddening that it took them over a decade to get there. And in the meantime, they neglected to temper the fear of vaccines in families - leading to decreased vaccination rates, putting children and adults with compromised immune systems in danger, as well as those not vaccinated. --

After years of inhumanity, cruel responses to criticism from the very population they claim to protect, and the passing of their founders, has Autism Speaks truly changed?

Autism Speaks claims it is no longer seeking a cure, and the word, “cure” was removed from its mission statement in 2016.

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.”

They've declared 2020 the 'Year of Kindness", added profiles of autistics on their website, changed the logo to incorporate more colors with lower-case letters for their name, and....what else?

Honestly, it's a bit disappointing...and that's coming from someone who's seen firsthand the damage they've done over the years.

It's great they're no longer using the word ‘cure’. It's great they're telling everyone they're wanting to be more ‘inclusive’. It's great they've finally taken a stand on vaccines (even if it was way too late). It's great they're featuring autistic profiles on their site.

But you know what's not great?

A decade and a half of no representation. Promotion of cruel and dehumanizing stereotypes. Suppression of autistic voices. Ignorance and decadence absorbing funds raised by well-intentioned friends, families and communities. An organization that claimed it was time to listen, but went out of its way to deafen its autistic critics.

And now that same organization is celebrating that legacy, whitewashing a profoundly harmful and traumatic history that has - and will continue to have - lasting repercussions for years to come. A ‘year of kindness’?

Many autistics believe that this ‘year of kindness’ will be turned against us - positing that neurotypicals will ask why we can't be more kind, or if we've tried kindness, or perhaps taking a year to extend kindness and love to Autism Speaks will promote change.

What kind of change are we as autistics expecting?

Not that any of these will happen, but here's what Autism Speaks needs to do to account for their years of indiscretion:

1.) Apologize, publicly and with no strings attached. No ‘sorry ifs’, no ‘if you were offendeds', no ‘ifs’ - period. Acknowledgment in plain language with no shift of blame, citing specific events and actions and explain why they were reprehensible. End with a commitment to avoid such actions in the future. 2.) Regarding that commitment, establish an oversight committee that has full privileges and permissions to access whatever materials, records, communications, etc. within and coming from Autism Speaks. That committee must be staffed by a majority of autistics, and must be paid in kind similar to the board of directors.

3.) Establish a 5-year plan for autistics to comprise at least half of the board of directors, and an autistic as president of the organization.

4.) Reprioritize and expand funding to services for autistics - which as of now receives less than 2% of the budget - and support research for social and accessibility needs of the autistic community rather than towards cure and treatment research.

5.) Change and/or overhaul literature and advertisements, including the 100 Day Kit. Remove pathologizing language and redline myths such as autism is “on the rise” and “more common in boys.”

6.) The puzzle piece has to go, along the color and yes, even the name. The stigma, discrimination and falsehoods associated with these three symbols may not fully die with them, but it would definitely signal a major, monumental change, perhaps even towards genuine ‘kindness’.

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Organizations make mistakes, commit errors, have problems and issues. What sets them apart is how they handle those actions, how they take responsibility for them despite the fact that they would rather not admit to committing them.

Autism Speaks, if you're going to proffer this particular olive branch, maybe spend this 'Year of Kindness' by taking every day, every week, or every month and atone for the damage your organization has caused.

Otherwise, this celebration and ‘year of kindness’ campaign is yet another contrived, admonishing platitude that will only further the divide between the autistic and autism communities.

Your actions over this year will speak volumes, and we will be watching...and listening.

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In the meantime, listeners, you can support autistics through autistic-led organizations such as the Autistic Self Advocacy Network and the Autistic Women’s and Nonbinary Network.

I'm Leo Jones, and this has been....Neurologic. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ SOURCES: https://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/ #5d681dd43152 https://www.motherjones.com/politics/2017/04/trumps-autism-awareness-effort-not-show-support- autistic-people/ https://www.psychologytoday.com/us/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks- debacle https://autisticadvocacy.org/wp-content/uploads/2019/03/AutismSpeaksFlyer2019.pdf https://autisticmama.com/do-not-support-autism-speaks/ https://www.thedailybeast.com/autism-speaks-but-should-everyone-listen https://intheloopaboutneurodiversity.wordpress.com/2019/09/13/the-ableist-history-of-autism-speaks/ http://content.time.com/time/health/article/0,8599,1935959,00.html