Autism Speaks has gained a fair amount of exposure and popularity as an organization. I’ve seen their logo used in countless ways, and have known people who participated in their walks. However, it is a group that I—and many others—have refused to support due to their history of demonizing people with autism, ignoring their voices, supporting abusive groups, misreading false information and even potentially promoting eugenics. There’s good reason for people not to support their organization. There’s good reason for some to even call it a hate group.
In 2013, at the Washington, DC, Walk Now for Autism Speaks, the group made the disturbing decision to feature the Judge Rotenberg Educational Center, which is located in Canton, Mass., at the event. Autism Speaks has had connections and shown support for the center at varied moments over the years (8). The reason this was so controversial is due to the abuse many people have suffered at the hands of personnel at the center—which claims to feature “very effective education and treatment to both emotionally disturbed students with conduct, behavior, emotional and/or psychiatric problems, as well as those with intellectual disabilities or on the autism spectrum” (1). The center is well known for practicing aversion therapies in order to “fix” people, including electric shock therapy. The center even went on trial in 2012 after video footage was released of them tying down a teenager and shocking him 31 times for refusing to remove his jacket (2). In a 2014 panel with the FDA, an autistic woman testified about being left with burn marks and even losing sensation in part of her leg for almost a year due to the treatment she received at the Judge Rotenberg Educational Center (3). The fact that a group who is supposedly fighting for autistic people would support such a center is unacceptable.
Autism Speaks doesn’t actually focus on helping autistic people, though. In 2010, only four percent of their budget went towards providing services for autistic individuals (4). For many years, there were no people with autism even in the group’s leadership (5). The group also supported the false idea of vaccines causing autism up until recent years, with a senior executive resigning from the group in 2009 due to his disagreement with the group’s continued funding of research in that area (7).
This shifts into ableism, defined as the discrimination against people with different abilities, and hate when you consider the bigger issue of the group being accused of promoting eugenics. Autism Speaks’ website has stated their desire for a “cure for autism,” along with their support for research into prenatal testing (4). As this has already been happening with Down Syndrome, prenatal testing is not a “cure” for anything—it merely allows pregnant women the option of deciding not to raise a child with the condition by having the diagnoses available while abortion is still an option.
One of the big issues related to autism is the stigma surrounding it. Yet Autism Speaks does not work to reduce that stigma—they add to it. Co-founder of the group, Suzanne Wright, even went as far as to post this about families with autistic children: “These families are not living. They are existing. Breathing—yes. Eating—yes. Sleeping—maybe. Working—most definitely—24/7. This is autism. Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism” (5). The group’s 2009 video, titled “I am Autism,” was bad as well, where autism was represented as a character, saying, “I work faster than pediatric AIDS, cancer and diabetes combined… I will plot to rob you of your children and your dreams (6).” Those are not the words of someone who cares deeply for autistic individuals—those are the words of someone demonizing a group of people.
Autistic people do not need to be “cured” or “fixed.” They are who they are, and I’ve come across many individuals who are offended by the idea that they could somehow be separated from something that is such a large part of who they are. The autism spectrum varies largely, and people’s feelings about their experiences with it will vary too. Autism Speaks is not speaking up for any of those people though. They are speaking over them.
Autism Speaks is focused on the ideal of a neurotypical world. It’s focused on sympathy and victimization for parents of autistic children, at the expense of the children. It’s built upon ableism… and it’s unacceptable.
(1)
https://www.judgerc.org/phone/index.html
(2)
https://m.huffpost.com/us/entry/us_1420633
(3)
https://autistichoya.net/2016/04/22/jennifer-msumba-april-2014-video-testimony/
(4)
(5)
(6)
https://www.latimes.com/opinion/op-ed/la-oe-0824-silberman-autism-speaks-20150824-story.html
(7)
https://www.theguardian.com/lifeandstyle/2009/jan/25/autism-mmr-vaccine
(8)