This is my latest #boycottautismspeaks virtual protest. For those who don’t know, I have chosen, along with other autistic people and those who love them, to stop buying from businesses who financially support Autism $peaks.
But wait a minute, Nicole, you might be saying. You’re autistic. What gives?
To put it simply, Autism Speaks is an organization that pretends to act in the best interest of autistic people and their families, but does not. A few fast facts about Autism Speaks should illuminate the issue further (quoted largely from the Boycott Autism Speaks website):
- Autism Speaks’ senior leadership fails to include a single autistic person. The organization has repeatedly refused to include autistic people in its leadership since its inception. It would be difficult to imagine the NAACP without African-American leadership, or the NOW without female leadership…so how can an organization which claims to benefit autistic people exist without autistic leadership, and insist that it can speak for autistic people? Additionally, the first, last, and only advisory board member on the autism spectrum, John Elder Robison, resigned in protest over their inflammatory rhetoric that compares autistic people to kidnapping victims, amongst other things. (You can read his post about his resignation here). Which leads me to the next point…
- Autism Speaks’ fundraising efforts — and use of those funds — are problematic. First of all, the organization’s fundraising efforts consistently use pity-based appeals and messages that are dangerous, prejudicial, and inflammatory. Autism Speaks continues to persistently portray the lives of autistic people as tragedies, and us as tragic burdens — this latest video of theirs is one such example. Secondly, very little of their funds are used to actually help autistic people — only 4% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and their families, only 1% of Autism Speaks’ research budget goes towards research on service quality, and less than one-quarter of 1% goes towards research on the needs of autistic adults. Additionally, Autism Speaks fundraising diverts funds that are badly needed by local autistic charities towards themselves, which strips away these charities’ abilities to serve their local communities. And speaking of communities…
- Autism Speaks hijacks the public discussion on autism and presents themselves as the “Harold Hill”-type solution. This is especially problematic when it presents itself as “serving” or “helping” to social groups recently beginning to address autism, such as the African-American community. An example of this is their alliance with the National Black Church Initiative announced last year and its Global Autism Public Health initiative, which has involved outreach to public health organizations in India and Bangladesh. However innocuous their efforts may seem, they become most problematic when laced with their pity- and fear-based messages about autism and autistic people. I, as an African-American autistic woman, resent being presented as a “tragic burden” to anyone, but in particular to members of my own community.
- Autism Speaks has a history of supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public. If you’ve been watching the news, you’ve probably heard by now about claims that vaccines cause autism, which have no basis (check out the CDC’s statement on this here). However, as the Boycott Autism Speaks site put it, “the anti-vaccine sentiments of Autism Speaks’ founders are well-documented in mainstream media”. The organization announced it support what it terms “environmental research” according to this New York Times article — such research most certainly includes vaccines. Additionally, it has supported the Judge Rotenberg Center, a facility which has been documented to use electric shock against its students.
(Much thanks to Boycott Autism Speaks for the information I referenced above. You can read more here.)
Being autistic is part of my life, part of my existence, and part of my art. I’m an artist, and I will use my voice to speak up for what is right. I hope this post has served to illuminate why I speak up. For myself, my fiancé, my friends, and anyone else who is autistic.
If you’re interested in joining the virtual protest, there are more details on the Boycott Autism Speaks Facebook page.