The Ugly Side of Autism Speaks

NOTE: The following does not represent the views of Kind Tree-Autism Rocks. Kind Tree takes no official position on the actions of other autism-related charities.

The first time I had ever heard of Autism Speaks was a public service announcement, in which the odds of an autism diagnosis were compared to those of your child dying in a car accident. That didn't sit well with me. But at the same time, I wondered if this organization was actually trying to help, and, like so many before them, had just missed the point. Sadly, this does not seem to be the case.

What followed was a long string of announcements and advertisements that continue to make offensive or dehumanizing statements about autistic people. A common theme within the Autism Speaks narrative has been that autism is more common than childhood AIDS, diabetes, and cancer, combined. While this is technically true, it is a horribly offensive comparison to make, as many of us on the autism spectrum do not feel that we are diseased, and do feel that we are capable of living a happy, and in many cases, normal life.

There are two videos in particular that have been made by Autism Speaks, and were distributed via the internet. These are titled “Autism Every Day” and “I Am Autism.” Both of these videos are presented with disturbing background music, and portray autistic children at their absolute worst, providing no context to help explain their behavior.

In the Autism Every Day video, children are shown screaming, as if that's the normal state for them. Throughout the entire video, parents talk about their children right in front of them, as if they aren't there. You don't do this to a normal child, so why is it acceptable with an autistic child? Six minutes and twelve seconds into the video, one of the mothers even talks about wanting to drive off of a bridge with her daughter, and talked herself out of it by thinking of her neuronormal daughter. Her autistic daughter was right in front of her.

I Am Autism presents a sinister sounding voice to represent autism as an entity, trying to take away children. This has been almost universally criticized within the autism community. Frankly, there is nothing about this portrayal that I don't find offensive.

To their credit, Autism Speaks has pulled both videos, but only after much criticism. I could find no acknowledgement of either video on Autism Speaks' official website.

In an interview conducted in September of 2011, Dana Marnane, vice president of Autism Speaks, made the following apology for their offensive ad campaign:

“We are a young organization and we learn as we grow. Without a doubt we have made mistakes – and to those we may have offended we are truly sorry. We never set out to offend. We are sincerely trying to help all those struggling with ASD. The autism spectrum is just that – a broad spectrum – and we respect that there are many different points of view. What touches someone can offend another. What we ask of this community is to also respect that others don’t think or feel the way they do – that doesn’t mean their opinions and thoughts are wrong. We all need to learn to be respectful and compassionate.”

I find this apology to be weak. It is not appropriate to ask for greater understanding of one's actions from a community that has been soundly offended and harmed by those actions. Further, I have seen little change in the tone of Autism Speaks' message since this apology.

So, we've established that, while Autism Speaks is spreading awareness through their public service announcements, that awareness is far from being beneficial to the autism community. But that isn't the only thing Autism Speaks does. What about the research department? Surely, more knowledge about autism must be beneficial.

Autism Speaks spends approximately $16 million per year on research. That seems respectable. But is that money being spent wisely in areas that are of benefit to the autism community? The short answer is no.

Much of the research that Autism Speaks pays for is oriented toward finding a cure or a cause. For significant portions of the autism community, these are irrelevant. Most autistic people do not want to be cured, and all of the likely non-genetic causes have been debunked. Further, Autism Speaks still continued to spread the idea that autism is caused by vaccinations, even after their own science department said that it's impossible.

The autism community would much rather have this money spent on supports and service, and research that will lead to improving the lives of existing autistic people. While Autism Speaks does devote some resources toward these areas, they sadly don't seem to be a high priority.

It may seem surprising that an organization would so aggressively act against the desires of the very people it claims to represent, but it goes even further than what I've said so far. Autism Speaks has a history of making legal threats against autistic people that speak against them. Most notably, Zachary Lassiter for designing a parody t-shirt, and a girl simply referred to as Kelly, the founder of a website called NTSpeaks, both in 2008.

Autism Speaks called off the lawsuit against Kelly after it was revealed that she was 14 years old at the time. They deny making any legal threats against Zachary Lassiter, despite the seller of the shirt confirming the source of the threat.

In 2012, a woman named Simone Greggs was being hired by Autism Speaks. She had completed five interviews, and had passed the background check and drug test. The offer was rescinded after she asked for schedule accommodations for her autistic son.

In addition, Autism Speaks has only had one autistic person on their board of directors, John Elder Robison. Robison has long been an advocate of autism acceptance. He joined the board to push Autism Speaks' actions in a direction more closely aligned with the desires of the autism community. He finally resigned in late 2013, after having made no difference at all.

What can possibly be the purpose of an organization that seems to be so aggressively opposed to the views of the people it represents? In the year 2012, Autism Speaks spent, as I said previously, approximately $16 million on scientific research and awards, and a whopping $2 million dollars on family services. That's $18 million dollars, or 28% of their revenue for that year, on their stated goal. $23 million dollars went to salaries, benefits, and payroll, including executive pay. I think this answers the question.

I'm not writing this to cause despair, or to make your blood boil. I'm writing it as a call to action. The autism community deserves representatives that speak our views, and that share our goals. How shall we push back against the ones that have so abysmally failed us? Leave your ideas in the comments below. Two weeks from today, on July 20^th, I will write a follow-up, combining the best suggestion, some of my own ideas, and some things that are already being done.