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January 2011



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 Washington DC

Join The Autistic Self Advocacy Network and allies as we protest Autism Speaks at their “Walk for Autism” on Saturday, October 31 at the National Mall in Washington DC.

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 and to the cause of disability rights.

We protest the agenda of Autism Speaks and the organizations that have merged into it, including Cure Autism Now and the National Alliance for Autism Research. Comments by co-founder Suzanne Wright include a call to “eradicate autism for the sake of future generations, ” ignoring autistics who are here now and our families and communities. Although Autism Speaks is capable of addressing the very real needs of autistic children and adults, and our families and communities, it chooses not to.

An analysis of Autism Speaks 2008 financial report reveals that only 4% of Autism Speaks’ total funding is spent on family services. 65% is spent on research in areas that focus on “curing” autism. Another 28% is spent on “awareness” and fundraising. The “awareness” component does almost nothing to educate people about autism itself and is mostly geared toward raising funds for “curing” autism. Pages on Autism Speaks’ website support James Watson, who was dismissed from Cold Spring Harbor Laboratory after making grossly racist remarks, and Autism Speaks has funded Dr. Joseph Buxbaum, who asserted that a prenatal test would soon be available, indicating what sort of “cure” might be expected.

The literature in the “Participant Guide” that is used specifically for fundraising for the Autism Speaks “Walk for Autism” walks includes such language as “shocking,” “terrifying, ” and the coupling of cancer and AIDS statistics with autism statistics. This rhetoric is offensive and misleading, adding to the stigma autistics and other people with disabilities must face from society.

Autism Speaks’ recent PSA, titled “I Am Autism,” presents autistic individuals as kidnap victims, burdens, and inhuman. In the video, autism is presented as a soul-stealing entity that ruins marriages, causes bankruptcy, triggers embarrassment, and erodes morality.

This latest example of using fear, pity and stigma to raise money is in line with Autism Speaks past fundraising videos, which have presented being autistic as akin to being in a fatal car accident, being struck by lightning and other situations resulting in death. The walks are held in order to fund a mega-million operation (over $22 million this year raised from “Autism Walks” alone), which includes annual salaries that go as high as $600,000 a year for top executives. All the efforts in Washington DC have raised almost enough to pay the salary of one top-level executive in the organization: $461,918.

Autism Speaks does not give any consideration to the damage its alarmist rhetoric causes to autistic people and our families and friends. Although claiming to “speak” for autistics, autistic self-advocates are not represented at any level in the organization.

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.

We will carry out our protest at the Old Folklife Festival Site, between Constitution Avenue and Madison Drive, in between 14th and 15th Streets. We will assemble there between 8 a.m. and 8:30 a.m. The closest Metro stations to the protest site are Smithsonian and Federal Triangle.

Please RSVP to the address below so we will know how many people are coming. Metro transportation information is below the ASAN addresses.

Paula C. Durbin-Westby
Board of Directors
The Autistic Self Advocacy Network

pdurbinwestby@ autisticadvocacy .org

Autistic Self Advocacy Network
1025 Vermont Avenue, NW, Suite 300
Washington, DC 20005
http://www.autistic advocacy. org

Metro accessibility information:

http://www.wmata. com/accessibilit y/metrorail. cfm

http://www.wmata. com/rail/ maps/find_ station.cfm# c30

Autistic Plea Less Pity

People with autism speak out for equal treatment in society.


Metro Editor

Published: Monday, November 2, 2009
Updated: Tuesday, November 3, 2009

Detached from the sea of walkers at the annual Walk Now for Autism Speaks fundraiser in D.C.,  was a group of about 15 autistic individuals who stood protesting.

Against the backdrop of the Washington monument, they chanted “Autism Speaks doesn’t speak for us,” and “Autistic people speak. Are you listening?”

Ari Ne’eman, founder and president of the Autistic Self Advocacy Network (ASAN), led the protestors. Contrary to the mission of Autism Speaks, Ne’eman and members of ASAN allege that the organization is actually exploiting the autistic community instead of helping it.

“I saw that all too often, autistic people are kept out of the public policy discussion about us and decisions are put forward that don’t fit with our needs and don’t relate to what we want,” said Ne’eman, who, along with the other members of ASAN, is autistic.

On a misty Saturday morning, supporters came together on the National Mall for the Walk Now for Autism Speaks, and raised a total of $692,196, according to the walk’s website.

The largest grassroots autism walk effort in the country, this annual event takes place in several communities around the United States, as well as in the United Kingdom and Canada. 

According to an ASAN press release, 65 percent of the funds Autism Speaks raise go toward scientific research and identifying autism-causing genes. Autism Speaks only allocates 4 percent to services for individuals and families.

“My goal is to try and get some of the money that Autism Speaks raises given to other organizations [that] focus more on helping improve the quality of life [of autistic individuals] with supports to hold a job or supports to be able to live independently,” said Jonathan Gubits, ASAN member since 2007.

The vision of Autism Speaks is to increase awareness of the disorder, fund research into the cause, prevention, and treatment of autism and to advocate for autistic individuals and their families. Bob and Suzanne Wright, grandparents of an autistic grandchild, founded the organization in 2005.

But Paula Durbin-Westby, organizer of the protest and ASAN board member, does not believe Autism Speaks is upholding its promise and vision.

Founded in 2006, ASAN is a non-profit organization composed entirely of autistic people who work to accurately educate the public and create honest conversations about autism. By engaging in public policy advocacy, they hope to change public perception and combat misinformation, as stated on the ASAN Web site.

“It’s sort of a two-pronged approach. One, we want to educate some of the walkers about some of the tactics and methods of Autism Speaks because they use fear, misinformation and stigma about us to fundraise for their projects,” said Durbin-Westby. “They use this kind of stigmatizing information and you wouldn’t do that for another disability.”

She sites a recent campaign advertisement used by Autism Speaks to garner attention to the disorder. Titled “I Am Autism,” the video features an anthropomorphized “voice of autism” that poses as an intruder and threatens to divorce parents of autistic children and bankrupt families.

“I am autism…I know no color barrier, no religion, no morality, no currency,” said the low but deep voice in the video. “I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined.”

ASAN members have a problem with such fundraising tactics because they feel the overall message is degrading and helps to instill a sense of fear and alarm in the general public about autism.

Ne’eman said the “I am Autism” video and other Autism Speaks projects send the message that people who are autistic should be pitied and are a burden to society.

“There are some real practical implications and how it hurts us when we’re trying to find jobs, when we’re trying to be included in schools, when we’re trying to be accepted by our peers, and enter relationships and friendships,” said Ne’eman.

Evelyn Ireland is a 14-year-old eighth grader who is autistic and is trying to wade through school and unkind classmates. She said her peers annoy her because they view her as being different from them.

“I just don’t tell people about my syndrome because I don’t want them treating me like [I’m a] weirdo, or a baby, or make fun of me more than they already do.”

Academically, she is “mainstream,” meaning the school has not placed her in a special program. She is able to attend the same classes and matriculate through school in the regular program with her friends.

Even at such a young age, Ireland wanted to come to the morning’s protest with her parents because she didn’t believe in or agree with the way Autism Speaks represents her and others like her.

She said she wants to be better represented and seen as an equal to everyday, “normal” people. 

Source:   http://www.thehilltoponline.com/autistic-plea-less-pity-1.2046862

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