 "Photo: Genet Lakew")
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.
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