Over 60 organizations condemn lack of representation, exploitative and unethical practices by autism organization

Washington, DC – More than 60 national, international, and local disability rights organizations have signed onto a letter condemning the organization Autism Speaks for exploiting those it purports to help. The letter (see center column) was released on Wednesday, October 7 by the Autistic Self Advocacy Network (ASAN), the leading advocacy organization run by and for Autistic youth and adults speaking for themselves. The letter’s signatories include the Arc of the United States, TASH, the Bazelon Center for Mental Health Law and the National Council on Independent Living, and it calls on Autism Speaks' donors, sponsors, and supporters—including Toys ‘R Us, Home Depot, Fox Sports and Lindt Chocolates—to end their support for the organization.

The joint letter highlights a pattern of behavior on the part of Autism Speaks beyond any particular instance, but it was instigated following Autism Speaks’ most recent fundraising video, entitled, “I am Autism”. The disability community reacted in horror to the “I am Autism” campaign, which presents Autistic people as kidnap victims and burdens on their families and local communities.

ASAN held a protest in Portland, Oregon on September 26 that received widespread local press coverage, including segments on the news broadcasts on two local television stations, KPTV-12 (Fox) and KOIN-6 (CBS). Additional protests are being organized for Sunday, October 11 in Columbus, Ohio, and for Sunday, October 18 in Boston, Massachusetts. ASAN is also organizing a large protest at an Autism Speaks-sponsored concert at Carnegie Hall in New York City on Tuesday, November 17. Singer Bruce Springsteen and comedian Jerry Seinfeld are headlining the concert. See the attached Media Advisory for details of these protests.

“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re 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,” proclaims the spooky announcer on Autism Speaks’ “I Am Autism” video. Produced by Academy Award-nominated film director Alfonso Cuarón and Grammy award-nominated songwriter/producer Billy Mann, the video premiered at the United Nations World Focus on Autism Conference in front of a collection of dignitaries and First Ladies and was subsequently released online on September 22.

Since then, Autism Speaks has attempted to distance itself from the video, taking it down from its website while continuing to distribute it via YouTube (http://www.youtube.com/watch?v=HDdcDlQVYtM&feature=related). The joint letter highlights three areas of unethical and exploitative behavior on the part of Autism Speaks:

a) Its damaging and offensive fundraising tactics, which frequently equate being autistic to a fate worse than death

b) The low percentage of money donated to Autism Speaks that goes towards services or support for families and individuals, particularly in light of its high executive salaries

c) The lack of representation of Autistic people themselves in Autism Speaks’ Board of Directors or leadership

“This joint letter sends a clear message to the corporate and philanthropy world that Autism Speaks does not speak for Autistic people or our families,” said Ari Ne’eman, an adult on the autism spectrum and President of ASAN. “The type of fear-mongering and exploitation Autism Speaks engages in hurts Autistic people by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.”

In addition to relying on arousing fear and pity to raise funds, Autism Speaks’ video repeats frequently referenced claims of higher than average divorce rates among parents of Autistic children. A study conducted in 2008 by Harris Interactive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities.

The video also relies heavily on the idea of rapidly increasing autism rates. Another new study by the British Government’s National Health Service, which was released the same day as the video, found that the autism rate among adults (one percent of the population) is the same as the rate among children. This provides evidence that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.

“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child who lives in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” wrote Sarah, an Autistic blogger at the blog Cat in a Dog’s World. She added, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 New York University Child Study Center’s “Ransom Notes” campaign that used fake ransom notes claiming to be from an anthropomorphized disability that had kidnapped a child. After widespread outcry from self-advocates, parents, and professionals and the condemnation of 22 national disability rights organizations, led by ASAN, those ads were withdrawn in just two and half weeks. The Ransom Notes controversy was covered by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post, and other major media outlets. ASAN is working with the cross-disability community on a similar response to Autism Speaks’ campaign.

“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the Board of Directors of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation, and we are taking action.”

About ASAN

The Autistic Self Advocacy Network (ASAN) is an inclusive international non-profit organization run by and for autistic people. ASAN seeks to advance the vision of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports, and others, ASAN focuses on organizing the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN works to advance the idea of neurological diversity by furthering the view that the goal of autism advocacy should not be to create a world without Autistic people. Instead, it should be to create a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens. For more information, visit http://www.autisticadvocacy.org.

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(You can click on the heading of each column to sort... so if you click on the "date" heading, it will sort the page by date)

 

First they came for the communists*,
and I did not speak out...
because I was not a communist;
Then they came for the socialists,
and I did not speak out...
because I was not a socialist;
Then they came for the trade unionists,
and I did not speak out...
because I was not a trade unionist;
Then they came for the Jews,
and I did not speak out...
because I was not a Jew;
Then they came for me...
and there was no one left
to speak out for me.

~~Martin Niemoeller 1892-1984

*For more information about this poem please click here.

The author of the page referenced provided translation of a passage from the 1946 publication, "Die deutsche Schuld, Not und Hoffnung" about Niemoller :

"When Pastor Niemöller was put in a concentration camp we wrote the year 1937; when the concentration camp was opened we wrote the year 1933, and the people who were put in the camps then were Communists. Who cared about them? We knew it, it was printed in the newspapers. Who raised their voice, maybe the Confessing Church? We thought: Communists, those opponents of religion, those enemies of Christians - "should I be my brother's keeper?" Then they got rid of the sick, the so-called incurables. - I remember a conversation I had with a person who claimed to be a Christian. He said: Perhaps it's right, these incurably sick people just cost the state money, they are just a burden to themselves and to others. Isn't it best for all concerned if they are taken out of the middle [of society]?"

However, the persecution of disabled people began before 1933 with the sterilization program carried out and advocated by Hitler in 1929 when he was a struggling politician trying to rise in the Nazi party. Thousands were killed by the sterilization processes. So, even if we take this quote as the original thoughts of Niemoller, he was wrong on this chronology as well. In fact, the sterilization program began in the late 19th and early 20th century with the eugenics movement which started in America and crossed the Atlantic.

The "Euthanasia" program was National Socialist Germany's first program of mass murder, predating the genocide of European Jewry, which we call the Holocaust, by approximately two years...The Martin Niemoeller Foundation's definitive poem fails to recognize the significant historical atrocity against the disabled and we call upon people of conscience to recognize that the disabled were first targeted for a final solution... and if we are not watchful may be the first in line for the next wave of eugenics.

Click here to read more about the above-referenced euthanasia program.

 

The video above was made out of short videos and texts from many autistic contributors. It was made to counteract the negative anti-autism message from Autism Speaks, and was commissioned from Autreach (with support from ASAN) by TreeHouse, a British autism-education charity. To find out more, visit www.autreach.org.uk It is fine to show it whole, use it whole, copy it and distribute it whole. But if anyone wants to just use a part of it they should ask the original creator of that part for permission (each contributor can be contacted via a URL, in the credits at the end). Hopefully, the complete short movies submitted will also be uploaded in their own right - they are all on the DVD of this, under the heading About Us.

The following letter from over 60 disability rights organizations was sent to numerous national sponsors of Autism Speaks. Individual signatories can show their support by signing the petition at http://www.ipetitions.com/petition/AutismSpeaks. Please feel free to distribute this to your networks.

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism... I know where you live... I work faster than pediatric AIDS, cancer and diabetes combined. And if you're 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 will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain... I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Thank you for posting this information about Autism Speaks' impressive generosity . . . to its staff, bankers, and PR people. It doesn't surprise me that Autism Speaks shovels piles of money at their executives and their Park Avenue rent. In 2005, I personally found out just how eager they really are to help the families they claim to raise money for.

Our family was displaced by Hurricane Katrina and lost half of our household goods in the flood, including a car. We evacuated to New England, where we had some relatives, but we were otherwise completely isolated from everyone we knew. I searched online to try to find out what happened to a New Orleans friend, another parent of a child with autism. I was thrilled to find her mentioned on a page for "AutismCares," a project that Autism Speaks was asking people to donate to, so they could help families like ours who were homeless and trying to help our children with autism cope with all the upheaval. The website was featuring my friend, who was supposed to open a school for kids with autism, but Katrina hit the city on the day it was to open, and the school building was totally destroyed. Give to AutismCares, the site asked, so we can help deserving people like this.

I sent an e-mail to the contact person listed on the site, asking them to forward my contact information to my friend, so we could provide each other with emotional support. I also applied for some assistance because we were about to move back to New Orleans from Massachusetts. I spoke on the phone with an AutismCares woman who wanted to know exactly how much money we were requesting, and what it would be used for. She would have to be able to justify the expenses to her boss, she said, so she would need us to fax her an itemized estimate before they could even consider sending any funds.

We had to get a trailer hitch for our car because we were going to tow a small trailer with goods that family friends had donated, so that we could start over. We knew from many summer trips back and forth between New Orleans and the relatives' house that the drive would take 2 1/2 days (driving 8-10 hours a day), so we were hoping that AutismCares could help us pay for two motel nights--we're not talking about the Hilton, mind you. Comfort Inn, Quality Inn. All in all, we were only asking for about $300.

The AutismCARES woman I spoke to took the most uncaring tone of anyone I had dealt with so far, and I'm comparing her to FEMA operators and Red Cross operators, two other organizations that were supposed to help us, but didn't, despite hours spent on the phone and multiple calls. The AutismCARES lady implied that we had no right to be hauling anything across country. If we had so much stuff, we couldn't be that bad off. (The only reason we had any of these things was because it was donated; we sure didn't have the money to replace what we had lost. Even if we could afford it, very few stores were even open in New Orleans yet.) She questioned why we needed to stay two nights in hotels. When I explained that we had driven the route many times before and knew how long it took, she told me in an exasperated voice that SHE routinely drove from Philadelphia to Florida in 18 hours. When I said that with two young kids, one with autism, such long days weren't really an option. Well, she said, SHE made the PA - FL drive with two young kids AND a cat, AND she did ALL the driving.

At that point, I gave up. There was obviously no convincing this angry lunatic that we deserved any help. From her tone, she clearly thought we were just leeches. I had too many other things to do in order to move out from our temporary lodgings and prepare for a cross-country drive. I couldn't waste any more time begging for help from someone who wouldn't do anything for me but make me cry.

Only later, as we made the drive, did I realize how much shorter a trip from Philly to Florida would be, straight down the eastern seaboard. We were going diagonally across half the country. Just getting from eastern Massachusetts to the far side of New York City takes most of one day. Driving from Philadelphia, she didn't have to deal with New York at all.

Later still, after we were resettled in New Orleans, I finally tracked down my friend, who had also made it back. We had a great reunion, and I eventually asked her if the lovely people at AutismCares had ever forwarded my e-mail to her. She looked like she wanted to scream. No, they had not, she said, but that didn't surprise her. They had been using her story to promote their cause, panhandling for donations so they could help all the families displaced by Hurricanes Katrina and Rita, implying that they were going to provide her with a huge donation so she could re-establish the school she had worked so long and hard to open.

"They never gave me a cent!" she said. "Not a penny!" When it finally became apparent that they had no intention of helping her, she had to contact them repeatedly before they took her name and story off their website.

Autism Speaks. Appropriate name. They are ALL TALK when it comes to directly assisting the families they claim to care about so much.