As many of you may know, April is Autism Awareness Month. This month-long outreach and fundraising project is led by Autism Speaks, a nonprofit organization whose supporters range from celebrities like Yoko Ono and Stephen Colbert to Greek organizations on our very own campus. Despite the apparent innocuousness of Autism Speaks and its message, the group has drawn quite a bit of criticism. This criticism — strange as it may seem — comes primarily from autistic people and their families. Many of these folks have organized a parallel “Autism Acceptance Month” in order to present a different take on their conditions and the way that we think and talk about them. It is in the spirit of this latter project that I write this column.

Autism, also known as Autism Spectrum Disorder (ASD), is an umbrella diagnosis for a variety of conditions. The specific manifestations of ASD range from “different” to debilitating. Many autistic people report experiencing both of these extremes in different aspects of their lives. This duality characterizes the autistic community, leading many individuals with ASD to have complex relationships with their conditions. Despite this undeniable complexity, Autism Speaks presents a much simpler story. 

One of the earliest problems with Autism Speaks was its “Autism Every Day” film produced in 2006. This film chronicles the difficulties of parents raising autistic children, most notably a member of the Autism Speaks leadership who, in the presence of her autistic daughter, recounts her contemplation of murder-suicide by driving off the George Washington Bridge. The woman then goes on to say that the only reason she didn’t was for the sake of her other, non-autistic child. 

This is typical of the way that Autism Speaks encourages neurotypical (non-autistic) people to think about autism. Best embodied by their puzzle piece logo, autistic people are seen as a problem to be solved rather than human beings with any kind of agency. 

This transformation of autistic people into things — obstacles for parents and siblings who are presumably the real protagonists in the struggle — came to its logical conclusion in another video released a few years later. This video, “I Am Autism,” features a gravelly-voiced narrator a la Fallout who is literally personified autism. Autism (the narrator) explains that it works faster than “pediatric AIDS, cancer and diabetes combined” before threatening to bankrupt you and destroy your marriage. This continued for some time, accompanied by home videos of autistic children struggling with everyday tasks and staring blankly into the distance. 

This is a show, a spectacle, a pornography of misery. Like any number of other charities that selectively deploy images of starving African children or bruised and battered women to solicit donations, Autism Speaks does this for a reason — because misery sells. 

Let’s be clear, communicating the struggles of autistic people in order to urge others to action is an acceptable and necessary tactic, just as it is when dealing with hunger or domestic violence. However, just as the former Christian Children’s Fund and its regular advertisements often reduced children in the developing world to props defined by their poverty and oppression, Autism Speaks misrepresents autistic people as universally and uniformly broken, as well as helpless. Many people with ASD face serious problems, but they are not, and should not, be defined by their condition, particularly by our limited understanding of that condition. It is worth noting that both of these videos have been widely condemned by many autistic people and their parents.

 A notable response to these problems came from Emily Willingham, the mother of an autistic child, who wrote in Forbes, “I can’t begin to say how offensive it is that someone would distort our lives with our wonderful children as not even living, as nothing but ‘despair’ just to buy attention from people who don’t know any more about autism or autistic people beyond that blue puzzle piece.” 

While this response and others like it may seem jarring to those with little experience with autism, it is actually quite typical. These are the voices of those not represented by Autism Speaks, which lacks a single autistic person anywhere in its senior leadership. Autistic author John Elder Robison resigned recently from the organization’s Science and Treatment boards, citing the organizations lack of respect for autistic people and their families. 

Mr. Robison’s full resignation letter can be read here. 

Serious questions have also been raised about the organizational priorities of Autism Speaks. Despite their hellish depiction of parenting an autistic child, only 3 percent of the organization’s funds go toward family support activities. The cents-to-dollar ratio is not always the best gauge of the effectiveness of a nonprofit, but a look at what the organization does focus on can be illuminating. The group’s main focus (beyond fundraising) is research. The major focus of Autism Speaks-funded research is prenatal (pre-birth) testing to be able to determine if a child will be autistic before they are born. The end goal of this is to be able to prevent the birth of autistic children and create an “autism-free world.” It goes without saying that this process would involve the selective abortion of autistic fetuses once testing capabilities become sufficiently advanced and available. 

Yes, this sounds an awful lot like eugenics. That’s because it is.

This is not to say that we shouldn’t be raising awareness about autism, but rather that our awareness must be coupled with acceptance. There are plenty of nonprofits run by and for autistic people and their supportive family members, most notably the Autistic Self Advocacy Network (ASAN). They deserve your support. Now, in the spirit of Autism Acceptance Month, I will conclude with a few words from John Elder Robison. “I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.”

Contact John Hess at [email protected].